Clinical Trial Participant!

I have been selected to be a participant in a clinical trial called “A Phase 1 Study of bb2121 in BCMA-Expressing Multiple Myeloma”.  Hooray!!!

Let me riddle out that title for you.  A Phase 1 study is primarily intended to assess side effects of a drug or procedure, and to identify the optimal level of dosing.  If the treatment works, that is just a bonus, not the intended outcome.  The Phase 1 study I am joining has been underway since January,2016, so I am a late stage participant, which means I will get a higher dose of the treatment.

BCMA-Expressing Multiple Myeloma.  BCMA stands for B-cell maturation antigen.  That is a protein that may exist on the surface of a myeloma cell.  My myeloma cells have been tested, and they do have BCMA on their surface, so they are BCMA-expressing.

Bb2121 is more complicated.  Bb2121 is a chimeric antigen receptor T cell therapy (CAR-T) targeting BCMA.  T cells are a kind of white blood cell that mature in the thymus and help target or destroy foreign or invasive cells.  Chimeric antigen receptor means a mechanism for identifying a particular type of antigen, in this case the BCMA antigen.  My T cells do not naturally have the ability to identify the BCMA antigen. 

The process of adding bb2121 to my white blood cells is interesting.  At the hospital they extract my white blood cells through a process called leukapheresis.  The white blood cells are shipped off to a company called Bluebird Bio, Inc.  At the “factory” they first cause the T cells to multiply.  Then they use a lentivirus to insert a gene into the T cells that will recognize the BCMA antigen.  Then they further cause the modified T cells to multiply until there is a sufficient amount (or more) for my treatment.  Finally they ship the activated T cells back to the hospital where they are infused into my blood stream to attack any cells with BCMA on their surface.  The process from extraction to re-injection takes about 4 weeks.

To qualify for this study you must have relapsed and refractory Multiple Myeloma.  Relapsed means you have Multiple Myeloma that has come back a number of times.  Check, I have.  Refractory means you have received prior lines of treatment that have become ineffective.  Check, that I have also.  The original treatment of Velcade, Dexamethasone, + Revlimid became ineffective this spring.  The antibody treatment I received in August & September, Daratumumab, was initially effective, but at the end proved ineffective.  The replacement treatment of Carfilzomib, Dexamethasone, + Pomalyst has not proved to be totally ineffective, and I have only received it for 2 rounds of treatment, but it has not been the revolutionary treatment that it is reputed to be.

So the idea is that I will receive my modified T cells back after they have been “weaponized”, and they will search out and destroy my Multiple Myeloma cells.  In the past they have said they had no way to cure Multiple Myeloma, but they could control its effects and make it a chronic condition.  If this treatment actually does destroy all the Multiple Myeloma cells, that certainly sounds like a cure to me.  Dr. Levine, my oncologist, warns that this treatment is very new, and they need years of results to fully appraise the effectiveness of a treatment.  Could whatever caused the Multiple Myeloma in the first place happen again, and reintroduce the disease?  Yes, but you hope that there are weaponized T cells lying around that could destroy those cells as well.  Could there be pockets of Multiple Myeloma cells that the CAR T cells don’t find?  Certainly.  But the results in other blood cancers currently being tested, such as certain forms of leukemia, are very positive.  90 – 95% have had complete remission and have stayed that way for a year.  Since most recurrences of cancer happen in the first 2 years, that is very hopeful.

What are the side effects of the treatment that the Phase 1 study is designed to assess?  Two that stand out are CRS and Neurologic toxicities.  I always thought CRS was an affliction of the elderly standing for “Can’t Remember Shit”.  That may be, but CRS in this context means Cytokine Release Syndrome.  It occurs when the modified T cells kill so many Multiple Myeloma cells that the waste products that result from the cell deaths overwhelm the body’s ability to remove them, resulting in fevers, chills, low blood pressure, shortness of breath, and lots of other pleasant things.  They keep you in the hospital for 21 days to monitor and evaluate you.  They have ways of treating these side effects, but the key thing they want to observe is how my response lines up with the dosage I receive.

Neurologic toxicities are side effects associated with the brain: confusion, disorientation, sleepiness, hallucinations, tremors, seizures and difficulties with speech and balance.  In my case, how will they know?  Apparently they have a variety of subjects, so they have a plan.  They will establish a baseline before the treatment for a number of exercises that will cover these possible side effects.  Then they will do those same exercises after the treatment.  Any changes will alert them to possible neurologic side effects.

All of this results in a commitment longer than the stem cell transplant I underwent back in 2012.  I recall that I got out of the hospital after 11 or 12 days.  This requires a 21 day stay in the hospital.  But presumably the impact is much less.  I was wiped out and slowly recovering for months after the transplant.  Ideally, with the Multiple Myeloma gone, I will be substantially better after this event.  At least that is my fervent hope.

All this depends on my remaining healthy enough during the next 7 weeks so that I can participate in the study.  The coveted slot in the study opened up for me because another participant caught a cold.  Avoiding colds at this time of year in New England is difficult, especially at this holiday time, which of course I hope to spend with those little germ vectors known as grandchildren!  It now becomes a waiting game during which the goal is to remain healthy enough for the process described above to begin.

Relapsed and Refractory

At the time of the last blog post on August 21 (https://greg-vs-multiple-myeloma.blogspot.com/) I still had a feeding tube and I was just starting 8 weeks of Daratumumab.  The feeding tube was removed September 11, and while I recognize the vital role it played in my Whipple surgery recovery, I certainly do not miss it!  Unfortunately, treatment for Multiple Myeloma was totally suspended from the first appearance of the Ampullary Adenoma on Memorial Day, through the surgery and recovery.  As a result, the disease came back with a fury.  They chose Daratumumab, an infusion of antibodies, as the first approach to address the disease, to allow for continued healing from the surgery.  It was successful at first, cutting my Free Lambda in half.  But then it just stayed at that level, not getting any better.  In fact, toward the end of the Dara treatment, the Free Lambda went up again.  Clearly the stubborn disease had found a way to evade that treatment.

During September I felt better and better.  I was able to join Barbie in her walks over Cow Island to Big Sandy Beach and back.  I was slow, but I felt I was gaining strength.  And there were no new Emergency Room visits.  I was told my bones were still vulnerable, so I should not lift anything over 4 pounds.   I adapted, and put any heavy things in garden carts so that I wouldn’t have to carry their weight.  We closed up Cow Island Columbus Day weekend, hiring a fellow in his 20’s to get all the things we put into the waterfront shack there and positioned for the winter.  I had the role of saying which things went where and how to tie the boats to the rafters, but I didn’t lift anything heavier than the ropes involved.  Did I ever feel useless.

In spite of being careful, by Monday I was feeling much worse.  My back and torso had significant bone pain, and my lower back made standing up straight impossible.  No longer was I tempted to join Barbie on her walks.  I would understand if I had cheated that weekend in terms of lifting things, but I hadn’t.  By the end of the week, I felt I was falling apart.  Not only was I hurting, but simple things like walking up a flight of stairs got me winded. 

Ultimately my condition resulted in a change of treatment.  The Dara was abandoned, and a combination of Carfilzomib, Dexamethasone, and Pomalyst was initiated.  Carfilzomib is a proteasome inhibitor, much like the Velcade in my original treatment combination.  Proteasome inhibitors disable a key part of the cell that processes wastes.  So the cells die of their own excrement, so to speak.  Somehow they know which cells to attack, but I don’t know how.  Carfilzomib was approved by the FDA in 2012 for patients with relapsed and refractory MM.  The meaning of relapsed is obvious: it came back after the initial treatment.  The meaning of refractory is that the patient has received at least 2 prior therapies and the disease is still active.  Not a state you want to be in.  Carfilzomib is derived from some work done at Yale starting in 1998.  Small world.

Dex was part of my original treatment plan.  A steroid, it increases the effectiveness of the other drugs.  

Pomalyst acts to enhance the immune system’s response to Myeloma cells.  It is a relative of Thalidomide, so I have to pledge every month not to have unprotected sex with a fertile female.  [I’m willing (but not by forcing myself on anybody!).]  It is also much like Revlimid, the third element in the original treatment.  So we are back to a combination that resembles what they gave me in 2012, just different versions.  Different enough, I hope to evade the Myeloma cells’ adaption to the original versions.

I no longer feel like I am falling apart, but I am not back to where I was at the end of September.  I still have a pretty major scar on my stomach, but I feel like I have fully recovered from the summer surgery.  Clearly having two major medical events (Multiple Myeloma and the Ampullary Adenoma/Whipple surgery)  hit you at the same time has been more than my systems can handle.  I am hopeful that the new treatments can beat back the MM, but I doubt I will ever actually stand up straight again.  Especially with bone damage, there is a ratchet effect.  You get to a new state, you get better, but the structural changes don’t go away.  I haven’t written a blog post for a while because I was hoping for a conclusion to the drama.  No conclusion yet, but I thought I’d send out an update, as many of you have very kindly inquired about how things are going.

Here’s what the most recent numbers look like:

The spike up to the right is the Dara losing effectiveness.  The only 2 readings since the new treatment plan show the number coming down, but still in a harmful range.  I can’t wait for the next reading.

Thank you all for your concern and good wishes.  I hope the next blog post reflects some positive changes.

Mostly Boring

Non-medical announcement: our 6^th grandchild, Kevin Bartholomew Jones, was born to Brian and Bridget at 11:21PM on August 9^th.  Mother and child are doing well, but with 3 boys ages 4 and under, one can only speculate about the craziness that awaits them!  And the future food bills!  It is a pleasure to hold Kevin; a wonder to observe how perfect the fingernails, the eyelashes, the hair on his head, his toes.  Babies are such miracles!  And not boring at all.

After the last post, things did settle down, and I have proceeded to get better slowly.  Occasionally I overeat and spend the next 12 hours reacting to the overburden in my stomach.  But generally I have refrained from overeating and the feeding tube has stabilized my weight.  Barbie even arranged for me to have a massage on Thursday morning, the day after Kevin’s birth.  Then we went into Newton-Wellesley Hospital to visit the new arrival.

I don’t remember overeating before the massage, but during the massage, I had an upset tummy and I was frequently burping.  Then on the ride into Newton, a major stomach upset developed.  In fact, clearly a MAJOR event was underway.  The anticipated pleasant visit with baby and parents was cut short, as my surgeons advised me to come back into the Beth Israel Emergency Room for a CT Scan to see what was wrong.  During the ride into BI my tummy was so upset that I had cramps in my abdominal muscles (the ones cut by the surgery).  Definitely NOT BORING.

When asked about the level of pain associated with the stomach upset, I said it was an 8.  By far the highest level of pain I reported in the entire series of events since May 26^th.  I wasn’t tempted to barf, but the pain was intense.  They gave me a big tumbler of water laced with contrast dye to prepare for the CT Scan, instructing that I had 2 hours to get it all down.  Which I did, but it was a major effort to swallow all that liquid.  Amazingly, by the time they had me on the table being scanned, the stomach ache was gone.  It was as if all that drinking flushed whatever was causing the problem away.  But the CT Scan revealed that my feeding tube was in my stomach – not in the intestine where it should have been.

So they kept me overnight in the ER so that I could have the feeding tube re-inserted into my intestine the next day.  This was done in Interventional Radiology.  You lie on a table that detects x-rays, and they insert a wire into the tube and manipulate it so that it exits the stomach and goes into the intestine.  This should be easier than normal, as the surgery removed the sphincter that closes off the stomach from the intestine.  But easy it was not.  They are manipulating the wire through your nose, and your nose is quite sensitive.  For the first 30-40 minutes they did not make any headway.  They seemed about ready to give up when they finally got into the intestine, and pushed it around a corner into exactly where they wanted it to go.  Relief!  Man, do I ever not want to go through that again.  This is the 4^th time the tube has had to be set, replaced, or repositioned.

The following Monday we met with Dr. Kent, the surgeon.  I was given permission to change the feeding tube schedule from 24 hours per day to 16 hours on and 8 hours off.  The goal is to consume almost as much liquid nourishment, so the insertion rate was increased.  It is great to have some time when the tube is not connected to the pump, but the tube remains, just taped behind my ear for my time off.  Having it behind my ear means it is less directly in front of my mouth, thus making it easier to eat.

I was also given permission to start the new Multiple Myeloma treatments.  So on Wednesday, I had the first of 8 weekly infusions.  The stuff being infused is Daratumumab.  It is not chemotherapy.  Instead it is antibodies which attach to Multiple Myeloma cells and enable killer white blood cells to attack them and wipe them out.  So it is very targeted therapy.  Unfortunately, people frequently have reactions to the infusions; in anticipation, they give you powerful pre-treatment drugs that include steroids and Benadryl.  They also administer the first infusion very slowly so that they have time to counter-act any adverse reactions.  The net result is that the first infusion is an all-day affair.  Luckily, I did not have any reactions.  I did sleep like a baby in response to the Benadryl.  What I didn’t realize until later that night was that the steroids they gave me were 4X as powerful as the steroids they used to give me with the Velcade.  So I was really wired at 11PM that night.  I took a lorazepam to bring on sleep, but I didn’t actually turn in until 1PM.  So far I have had 3 Wednesday infusions, and I have not had any reactions yet.  Each week they increase the rate at which they administer the infusion, so they take less time.  But the minimum is still probably 3 hours for the infusion and 2 hours ahead of time for bloods, a doctor or nurse interview, and the pre-meds.

On week 3 Dr. Levine ordered a free lambda test.  This is the test that measures the intensity of my version of Multiple Myeloma.  It had gotten as high as 2130 during the time I was being diagnosed with the ampullary adenoma.  After 2 infusions it was already down to 976.  At any other time we would have said that was a very concerning, high reading, but after getting to 2130 it seems almost benign.  Here is the latest long-term graph of Free Lambda:

The spike to the right exceeds the level of the free lambda back in 2012 when my bones were disintegrating.  Dr. Levine says the high readings may have been exacerbated because my body was fighting off a major infection following the 5/26 incident.  When fighting an infection, your body generates lots of white blood cells.  Free lambda is one of the components that goes into making white blood cells.  With Multiple Myeloma, it produces more free lambdas than needed and many of them don’t successfully become white blood cells.  

Here is the last year or so of that graph in case the full graph is too small to see the details:

On 8/2/17, the day we started the infusions, the reading had receded to 1778.  Still high, but not over 2,000. 

I am still on the feeding tube, but now for 12 hours on and 12 hours off, basically overnight plus a few hours.  I discover I cannot hear the alarm on the pump when it runs out of fluid or has a blockage.  It is a pure high-pitched sound, and unless I am right next to the pump, I simply cannot hear it.  Much to Barbie’s concern and astonishment.  Guess a hearing test is in my future, along with everything else.  The good news is that I am gaining back weight.  I am up to 171.6 this morning, up from a low of 157.  The next time there is a problem with the tube I am going to lobby that I just do without it, instead of having it reinserted.

The day after Wednesday’s infusion, we made it up to Cow Island, where we are enjoying being in this lovely spot.  And I have set a new record: I have avoided an emergency for unscheduled visit to the hospital for over a week!  Pretty boring, but very welcome.

I am feeling good, and I am beginning to do some projects here on the island, such as running the log splitter in small time segments. I do choose to spend more time on the computer doing things like this blog than I otherwise would, but that is OK as well.  Pretty boring.  We really hope it stays that way.

Another Setback

We arrived home Thurs. July 20, following several days in the hospital recovering from the bleed near one of the surgical sites.  The hope was that with the help of a blood transfusion and a “coil” in the site of the bleed, that things would settle down.  The task was to find a way to get me able to eat sufficient calories to stop the dramatic weight loss – a very difficult task, indeed.  I was lacking in energy and chose to sleep most of the time.  However, we had a reassuring visit with Prithema, the chief resident on the surgical team, following Monday’s CT scan, which satisfied her that all drains were in place and things were healing properly.  She felt I was about to turn a corner in my ability to eat, so that I could regain strength.  However, the decision was made to delay the scheduled resumption of a new chemo drug to address the Multiple Myeloma (this was to have been an 8-hour infusion Wednesday, 7/25), to allow me to recover further from the surgery before introducing another assault to my body.  Reassured, Barbie even began to hope for a couple of days on Cow Island.

 But Tuesday at 3PM, I developed a painful stomach ache.  Not just an upset tummy because of something I ate.  This was more like something was burning away at my stomach.  Eating was out of the question.  What to do?  Then around 9PM, all doubt was resolved, as I threw up green bile.  I could tell it was coming, so I grabbed a waste paper basket to receive it.  Unfortunately, it was not a new item, so it had a crack in the bottom, lending an almost comic aspect to the panic at the event itself.

We called the surgical hotline, and the doctor on call got right back to us.  The recommendation was to tough it out through the night, and then come into the Beth Israel Emergency Room early on Wednesday.  Actually, blowing lunch made the stomach ache somewhat better, so toughing it out was not that hard.  We got into BI really early, as Barbie got up at 4AM, and decided to beat the traffic.  Then around 8AM, I had a repeat performance, so they added anti-nausea meds to the IV.  Most of Wednesday was spent in the E R, waiting for a hospital room to become available.  Late Wednesday afternoon, we returned to the now familiar the surgical suite where they performed endoscopic procedures during the diagnostic phase. This time, they used these techniques to place a feeding tube into my intestine (beyond my stomach), entering through my nose.

You might well ask, what does a feeding tube have to do with barfing up green bile?  Well, in the month following surgery, I lost 30 pounds, sometimes at a rate of 2 lbs. a day. Clearly my efforts at eating were not working out.  Frequently I would eat enough to overwhelm my stomach, and then I was unable to eat anything at the next meal.  Perhaps the green bile was in reaction to my efforts to maximize the amount of nutrition I was taking in.  {Maybe not directly related, but helpful in the larger scheme of things.}  It became abundantly clear to everyone that I could never eat a sufficient quantity to maintain weight.  The past two hospital admissions included a diagnosis of “severe malnutrition”.  Needless to say, in this condition, all I felt like doing was sleeping.

Once the feeding tube was in and they ramped up the rate at which it deposits its liquid nourishment in my intestine, my stomach and innards seemed to get straightened out.  During the aftermath of the tube insertion, they suspended all food intake until the general anesthesia wore off.  Surprisingly, for someone with my normal appetite, that was no problem.  Then for 2 meals they had me on a clear liquid diet again.  I am on a feeding tube diet of 65 mille-liters of Jevity (the brand name for the light tan liquid nourishment) per hour.  This woke up my bowel system, and things began flowing.  {The first output had a distinct dark green color, so I suspect it brought some of that green bile along with it.}

The idea is that I can rely upon the tube feeding to support basic nutrition.  I don’t have to force feed myself to achieve the minimum input to support my metabolism and counter-act the weight loss.  I can eat what I like and give my digestive system time to recover from the surgery.  Which they say will happen in time, and then I can be back to my normal self.

Meanwhile I have a pole with a pump on it and a bag of Jevity wherever I go, which is a major pain.  At least the hospital is designed for people to walk around with IV’s dripping from poles, or tube feeding pumps on portable poles.  No rugs.  No thresholds.  No narrow passages where you have to lift the pole over everything.  No stairs.  All of which are features here at 61 Sudbury Road.  So I am motivated to get to the next stage, which is tube feeding only at night.

Just as I was motivated, once I was off my back, to get out of the hospital.  The hospital is very nice when you are in full recovery mode, but once you have turned the corner, a good read will only take you so far.  Plus I had a roommate like you read about.  A loud fellow who made all sorts of bodily sounds.  And who was a king of drama.  A diabetic for 35 years, he knew exactly what he wanted for insulin and diabetic treatment.  When the authorities at BI prescribed something else, the debates were intense.  The roommate rarely stopped talking to listen to whomever else was in the conversation.  And he was worried about his dog, a pug.  Apparently someone had called the dog officer to report a dog alone in his apartment, and he was worried that the dog officer was going to confiscate his dog.  This led to a number of phone calls asking people to care for, hide, or take away his dog.  And to a rip-roaring message left on the voicemail of the person who reported the dog to the dog officer that featured just about every insult and curse in the book. (This conversation coincided with Scaramucci’s obscene rant, so similar in tone and basic vocabulary.) Phone conversations featuring tears lasted well past the 9PM start of quiet time in the hospital, and I had to ask Rob to resume the calls the next morning.  The solution was to leave the room and camp out in the Solarium at the end of the hall.  There may have been other drama I never witnessed.  I sure hope the next person they put in my bed is as mobile as I was.  I can’t imagine being stuck in that room 24 hours a day.

Ultimately, I was released on Saturday.  But there was drama with the release as well.  I had to have feeding tube supplies and a pump when I got home.  There is a standard contracting company that provides these.  The hospital’s understanding was that they did not do deliveries or training over the weekend.   Barbie found this incredible so pursued the issue with representatives located in out-of-state headquarters, who confirmed the company had 24-7 service.  She arranged for a Saturday delivery, where the driver making the delivery could train us on how to use the pump.

When the materials arrived Saturday evening, the driver knew nothing about pump set up and training. I had been trained in the hospital on the pump and tubing setup they have in the hospital which, naturally, was not the same as the materials for home use.  But at least I understood the basic idea. The best they could do was someone to train me over the phone.  Which is what we did, and it was good enough to get things going.  And to impress me how it totally immobilizes you.  Luckily we had a visiting nurse come Sunday morning who was able to review things and confirm that we had things set up correctly.  We see the surgeon, Dr. Kent, again on Monday, and I will lobby to move to the next phase (16 hours on the pump, 8 hours off) as soon as possible.

This time I promise to keep the drama to a minimum.  To the best of my ability.

More Drama!

This blog should be about my fight against weight loss following the Whipple surgery.  It should be about attempts to increase food intake that backfire.  It should be about domestic disputes regarding my activity level.  It should be about a camping trip Brian & company had in our back field that led to a serious over-indulgence by me in hot dogs and s’mores. 

Brian, Mike Quinn, Brendan, & Lyden Quinn.

Instead it is about a frightening bleeding episode on Sunday, 7/16, that brought me back to the emergency room at Emerson, then into Beth Israel by ambulance, then into the operating room for emergency surgery.

Barbie will say it was because I was overdoing the trips to the garden for weeding, and not getting enough rest.  The doctors tell me that a pool of pituitary juice toward my back partially digested the arterial wall of a major blood vessel, resulting in major bleeding. Either way, I was taking a nap on the living room couch Sunday afternoon when my back started to bother me intensely.  I thought it was a symptom of Multiple Myeloma, since my MM numbers are through the roof.  But no, MM had nothing to do with it.  

When I went out to the kitchen to tell Barbie about it, she pointed out with horror that my drains were completely full, my pants were full of blood, and the dressing on the surgical wound was saturated with blood.  [If you want a picture, Barbie took one that we can share.  The assumption is most folks reading this blog would prefer to give it a pass.]

We started to empty the drains, only to find the material in them was largely blood that had clotted, so it wasn’t coming out.  Pretty quickly we decided that the local (Emerson) emergency room was the next stop, so off we went.  We toyed briefly with the idea of driving directly to the BI emergency room, but there was a Red Sox double header that afternoon/evening, so we were afraid of the traffic.  And Barbie did not want to be driving that distance with me bleeding so profusely.  In the future, 911 will be the appropriate response….but somehow, neither of us thought of it in the heat of the moment.

The Emerson ER people were quick to evaluate the situation and decide this was out of their league.  Additionally, the BI doctor told them to send me on to them ASAP, so I sped on into BI via ambulance.   I do remember the ride but not much after that.  Perhaps I was light-headed as a result of the loss of blood.  At any rate, by 10PM on a Sunday night in the middle of the summer, BI had assembled a surgical team that went in and fixed me up.  Talk about heroic action!  But one of them said to me later in the week that is what you sign up for when you agree to be “on call”.  Thank heaven they maintain a full “on call” roster.

The on call people were in the Interventional Radiology department –a field of medicine I didn’t even know existed 3 months ago.  To staunch the bleeding, they accessed my abdomen through an artery in my right groin.  They put something that reinforced the arterial wall in the vessel that was bleeding (a “coil”), and brought the situation under control.  I woke up the next day in the ICU with a new hole in me, a new batch of dressings, and drains that were still actively pulling out the blood that had accumulated in the surgical site.  Once again, I don’t remember a good deal of Monday and Tuesday, as I slept off the effects of the anesthesia and the surgical wear and tear.  Now two groups of surgical follow-up people came to visit me: the original surgical team from Dr. Kent’s department and the group from Interventional Radiology.  Pretty soon the interventional radiologists dropped out and the Whipple team reasserted its control.

After a day and a half in the ICU, I ended up back on the same floor as post-surgery, but sharing a room with a fellow from Ohio who was unable to move on his own.  He had to be moved from bed to chair via a hoist, as he was unable even to stand.  It made me appreciate the fact that I was totally mobile and able to fend for myself in most regards.  I ended up fleeing the room and reading in a solarium because generally there was a TV on in the background, either westerns or game shows.  Books that people had lent me came in very handy.  Barbie and I continued to play cards to pass the time.

The challenge of maintaining my weight was compounded by the reality of hospital food.  By this time the menu of the Sodexo contractor that provides meals at BI has become mind-numbingly familiar.  The doctors added Carnation Instant Breakfast to my diet, but I have to admit that not much of that made it down. Wednesday they gave me a blood transfusion to try to restore some of what was lost, and to help with my general anemia and sorry nutritional state.

Yesterday they released me, in time to meet with Dr. Levine, my Multiple Myeloma oncologist.  Things were a bit late, as the paperwork always takes longer than the nurses anticipate.  But we got to the East Campus, and had a long meeting with Dr. Levine.  He said I had been through one of the largest, longest procedures that people can go through and still claim to be a complete person.   While recognizing the many challenges ahead, he commented that I had dodged “the big one”, referring to the fact that the final tumor biopsy revealed it to be pre-cancerous.  Barbie expressed great relief that I did not have to go through post-surgery radiation and chemotherapy.  Dr. Levine calmly added, “And those usually don’t work”.  I was lucky, indeed.

The plan is for me to get a completely new Multiple Myeloma drug, Daratumumab, next week.  I will go in for blood work and evaluation Tuesday, and then arrive early for an all-day infusion on Wednesday.  They give the infusion very slowly because people can have negative reactions to the new drug.  They can counteract the reactions, but they need to be very careful.  The doctors have also explained that the optimal treatments for my two conditions (Whipple recovery and Multiple Myeloma) are in conflict – obviously you do not want to be taking an anticoagulant when you are trying to heal from major surgery and have experienced internal bleeding.  But one of the most serious side affects of the Multiple Myeloma drugs is the risk of clot formation.  In the ideal world, the body would be allowed to heal from the surgery prior to starting an anti-coagulant in preparation for strong chemotherapy; but the Multiple Myeloma has gone untreated since May 26, so we cannot risk ignoring it any longer.

Sunday’s dramatic and serious bleeding episode was a real set back physically, but was also a wake up call, an indication that they were very serious when they said the recovery from the Whipple would be long and slow, and that the body needs lots of rest to recover.  This time, trips to the garden are going to have to wait.  For the first time in my life, food holds no appeal, but I realize the importance of nutrition in the healing process.  Whoever would have thought that such a basic – and enjoyable – basic function (eating) could so quickly become a vital chore?

I hope to keep things much more boring in the near future. So, Mrs. Lincoln, otherwise how did you enjoy the play?

Release Day + 4

Good News!  I was allowed to leave the confines of the hospital Saturday morning, Day 9 following surgery.  Physically being out of the hospital is GREAT!  But the real good news is the result of the biopsy.  Dr. Kent last Thursday stopped by in the afternoon to check my bandages and see how I was.  Other than being terminally bored in the hospital, I was fine. (Barbie speaking here: so sleeping 22 hours out of every 24 indicates “terminal boredom”, vs “acute healing”?)  Just as Dr. Kent was about to move on to the next patient, she mentioned that the results of the biopsy were very good.  Yes, the growth was large, somewhere between the size of a quarter and a $1 coin.  But the real news was that it was non-cancerous.  Definitely pre-cancerous, but it had not yet made the transition to cancer.  This is fabulous news!  It means I can just concentrate on recovering from the surgery;  I don’t have to deal with radiation or chemo-therapy.  Whew!

The downside of being home is that I am exhausted.  Yes, I did a few stairs once in at Beth Israel, just to make sure I was stable enough to do them.  But my default location here at home is my office (where I am now), which is upstairs.  Getting a meal, doing an infusion, taking some pills, virtually doing anything but typing at my computer involves a trip down + up the stairs.  I am taking the stairs slowly, but by the end of the day, I am pretty doggone tired.  As promised, I am finding that I have no appetite and taking nourishment, even in very small quantities, is a real chore.  Apparently inadequate nutrition definitely delays and interferes with healing, but it is not easy to force unwanted food down.

Just in case we thought the drama was coming to a close, earlier today, almost on a lark, I decided to check the BIDMC Patient Site, which has the results of recent tests.  On Saturday they sent blood out for the traditional Multiple Myeloma tests.  Usually it takes 3 working days for the results to come back, but I thought I would give it a try.  The results are in, and they are disastrous.  The Free Lambda reading is 2027.  The highest reading I have ever had before was 1329, back in 2012 when I was first diagnosed with MM.  The last reading before my surgery was 803, on 6/13.  So maybe the reason I am feeling exhausted is the imbalance in the blood, not the extra exercise of the stairs.  I’ve called into the hospital, but Dr. Levine, my MM Oncologist, is on vacation, and getting the right person to call back is turning out to be a challenge.

We are now set up to see Dr. Levine next Thursday and to have a chemotherapy infusion all day Friday.  Apparently they don’t want to start the chemo too soon, as the treatment impairs the healing from the surgery.  The infusion is required because of a concern that medicine taken orally might be affected by lack of absorption in my newly reconfigured gut.  I expressed concern about waiting for another 9 days to begin treatment, and Dr. Levine said the Free Lambda number would go higher, but he felt this plan was best.  I have no choice but to trust him.

Meanwhile, a blog post without a few pictures would be pretty boring.  You may not really want to see some of these pictures, but I’m going to post them anyway.  Here is my actual wound.  This photo is from the hospital, so things are looking a little different now.  But the general idea of the staples and the overall grin that the evidence of surgery presents is impressive, IMHO. 

 

Here is another, more recent view of the incision.  This is after a couple of the staples were removed and the result is a much more open wound in the middle.   But everybody seems to be happy with how it is healing.  Barbie is not happy about changing the dressings and tending the wound three times a day, pointing out that there was a reason why she did not go into nursing/medicine.  But she has risen to the occasion and found yet another area in which she can develop competence.

I still have 2 drains coming out from below the grin that allow fluid that builds up above and below the pancreas to have a place to go.  Actually, those drains are pretty comic in themselves.  They resemble an extra set of gonads on some pretty long strings.  Who would have known that fluid from around the pancreas would resemble soupy pinkish peanut butter?

Here is the highlight of this post.  Perhaps the single most annoying aspect of this procedure was a tube that went up my nose and down into my stomach.  It was known as a Nasal-Gastric tube or NG tube.  A very pure form of torture.  It had to go through the vocal cords, so I was only able to speak at a whisper.   And if I needed to cough, the tube prevented the vocal cords from blocking the way to the other tube, resulting in a very weak cough.  Since coughing when you have a healing stomach is inherently painful, only getting part of the effect of the cough was very frustrating.  At any rate eventually they decided that the NG tube could come out.  Here is a link to the video that Barbie caught.  https://youtu.be/UfaZmoyYGk8.  19 seconds that led to real relief.  It was the highlight of that day.  And the 2-3 days after that, as the vocal cords themselves proceeded to heal.

Finally, here are my feet and ankles at full swell, yesterday.  Today they are still swollen, but less so.

Overall, in spite of the drama, things are proceeding fairly nicely.  I am getting my appetite back, and getting lots of rest.  It may be a while before I am at full thrust, but we have started down the comeback trail.  I have to say that Barbie's devotion to my cause is a great help, and even I acknowledge that the things she is nagging me about are valid.

Day 8 Update

Much has happened since Sunday's entry, involving lots of ups, downs and detours along the way.  Real progress on the road to recovery,  though Greg is occupying the far right travel lane reserved for slow-moving vehicles hauling heavy loads.

Highlights:
- Fevers persisted Sun/Mon, as did continued tests to find the source.  Antibiotics increased.  Spot of pneumonia observed, so increased level of pain dosing recommended to allow Greg to cough more productively.  Fevers gone now, though he will remain on heavy antibiotics for several more days.

- Day 5 (Monday) removal of NG tube that was suctioning stomach secretions and causing him great discomfort, interfering with the ability to talk.  An intermediary step was disconnecting the suction pump and allowing the tube to drain naturally using gravity.  This less aggressive approach produced the desired reduction of gastric juices, so they were able to whisk the tube out in a single 16 second gesture (recorded on video)....and suddenly, he appears a new man!  Gradually his voice has been returning, though it is not yet robust and tires easily with use.
- The tube draining liver bile has been capped, eliminating one of the unattractive plastic sacks swinging below his johnny.  The two remains drains are situated above and below one of the difficult to reach newly stitched junctions.  Nurses collect the fluid, measure it and send it to the lab to be cultured, just to ensure that no infection develops at that site.  I hope that those dangling sacks will be able to leave soon, as well.
- Transition to food.  Tuesday (Day 6), he was allowed the first sip of water...accompanying a resumption of acyclovir, a medication he has taken 3x a day since the stem cell transplant that fends off Shingles.  (He will never be able to receive live vaccines, so will be on this medication for the duration).  Because this was tolerated, they moved him to clear liquids (tiny amount of jello and apple juice).
- Wednesday (Day 7) he progressed to "full liquid diet", but this had a major consequence.  Fortunately, his bowels had begun to wake up Tuesday.  Wednesday morning, they let their displeasure be known in a sudden and massive eruption, details of which Greg will disclose to those who really want to know.  I will only say that the result took an experienced team of 3 with heavy duty equipment over 30 minutes to restore order.  I do not remember that our wedding vows or any pre-nuptial agreement included my agreeing to deal with anything of this order or magnitude!
- Today (Thursday, Day 8) he was allowed to order a very small, bland breakfast.  Meals are to be small, frequent, fat free...Did I mention that they weighed him on Wednesday, one week after the surgery, and he had lost 15 lbs!  Brian's comment was that some of that was from the loss of organs....
- Looking ahead.  Yesterday they inserted a PICC line in anticipation of his being allowed to return home some time in the next couple of days.  Predictions vary, depending on which doctor, and which aspect of his case they are prioritizing, but it seems the basic criteria are: the ability to process simple foods without nausea (or other even more dire responses); the means to continue the IV delivery of antibiotics; an increased ability to move about a bit more (stairs, for example.  Someone from PT is supposed to work on that with him.)

Although everyone has always stressed how long the recovery will be, I was still unprepared for how overwhelming this has been for him. Of course I am used to seeing him fall asleep frequently, borderline narcoleptic that he is.  But I am not used to seeing him so totally fatigued.  A 30 minute conversation or interaction will be followed by hours of sleep. The doctors continue to remind me that he is "acutely healing", and that extreme fatigue will be with him for many months.

Meanwhile, because the surgery caused so much inflammation and he is receiving such heavy doses of antibiotics, it is fruitless to test his free lambda levels, which were dangerously high just prior to surgery.  The doctors emphasize that they must continue to triage his issues, so the one that we have been so worried about and tracking so carefully for the past 5 years (Multiple Myeloma) is completely off the table, at the moment.

I absolutely cannot conclude this without an editorial, especially as the mantra "Repeal and Replace" is the blind rallying cry of so many vocal politicians....who, by the way, just happen to make sure that they have much better health care options than are available to the rest of us (the field was leveled under the ACA, but the Ryan/McCormick proposals would reinstate special plans for our elected officials, who are busy restructuring limited options for the rest of us).  We were both self employed, at the mercy of expensive, crappy plans that would never cover Greg for preexisting conditions and that we know would have found ways to weasel out of covering catastrophic events such as this.  Thank heavens his major medical events have occurred once we achieved the safety of Medicare, and our excellent supplemental plan (Blue Cross/Blue Shield, in our case.)

I hear that "Life time caps" are back on the table.  In our case, a Life Time Cap IS a Cap on Life!  Where is the logic behind "pro-lifers" whose concern for the sanctity of live stops at birth?  Greg has had some pretty bad luck in the serious disease arena.  He has met these physical and psychological challenges with admirable resolve.  Should a bunch of hypocrites in Washington set the terms for when his opportunity to resume a constructive life is finished, in all practical terms?

As always, thank you all for your kind words and thoughts. You can do us all a favor by supporting politicians capable of unselfish empathy for someone other than their wealthy supporters.

Barbara

First meal in 7 days

Look ma, no pole!

Day 4

Day 4 (Sunday)

The doctors continue to stress that this is a complex surgery and no recovery goes exactly as planned.  Greg’s situation is complicated in several ways, and apparently it is not unusual to have days 3-5 feel as if things are moving backwards.  Worrisome is a low grade fever he has been running.  They have done a lot more tests to see if they can find the source, as the external suture site looks OK.  They have done some contrast dye tests to see if there is excess fluid around the internal sutures connecting the internal organs, and while there is a small leak between the stomach and pancreas, it cannot account for the amount of fluid that is accumulating and draining through various tubes.  Apparently the tumor was not located on the pancreas, so that tissue is healthy and does not hold stitches well.  They are monitoring output of these various organs, hoping that they slow down production of various liquids so that healing can continue.

The tube that enters his nose and goes to drain the stomach is the most uncomfortable.  Today an Ear/Nose/Throat team looked at the vocal chords, which are very swollen from the intubation during the lengthy surgery, but are moving correctly and therefore (hopefully) have not been permanently damaged.  I believe they gave a shot of local anesthetic to that area to help relieve the painful swelling. He can now speak very softly, for a very short amount of time.  Telephone conversations are still just not worth it.

They think there might be a bit of pneumonia in the lower right lung, close to where the surgery occurred, which may account both for the fever and for the pain he experiences there when he tries to breath deeply and cough productively.  No read yet on a recent chest X-ray, but they have broadened the array of antibiotics to include something that can address that.

We are really hopeful that removing the nasal tube, hopefully tomorrow, will help both his comfort level and outlook,  representing a turn for the better. He continues to get tired easily and sleeps a lot.

The good news of the past two days is that Andrew and Jess came from Vermont to visit, take him for a walk down the corridor, play some hearts…Brian and Bridget were playing tag team, one  keeping their kids busy, while the other one visited.  I kept Andrew’s crew out in Stow….first time home since Tuesday….so we’ve all been making it possible for each person to get in to see him.  Now both boys, families and dogs are at Cow Island for the next couple of days — how I wish we were able to join them, as originally planned!

So that’s the latest — the doctors say that he will get through this.  They want to do what they can to speed the healing process so he can get back to the Multiple Myeloma drugs — but he has to be able to process them orally before they can be resumed.  Complicated.

Thank you all for you interest and good thoughts.

Barbara

Day 3 (Saturday)

Below is Barbara's entry from ~2pm Saturday (which I posted as a comment to the preceding blog entry last night).  

Here's Greg from today on his way to get a CT scan.

- Brian




This is Day 3 following Greg's Whipple procedure. Gradually the number of tubes supplanting or providing support for various life-sustaining systems are being removed, as Greg begins the slow transition to his newly structured body. Gone is the oxygen tube, the dreaded catheter, and various other lines into vacant spaces remaining on his arms.

He is very tired and sleeps a lot. By far the most uncomfortable aspect -- other than the surgical site itself-- is the NG tube, which snakes through his nose, down the back of his throat and into the stomach. The purpose is to remove any secretions that are naturally generated by the stomach, even in the total absence of any food or liquid. The tube irritates the back of his throat and vocal cords, making it painful and difficult to speak. Normally the tube is scheduled for removal on Day 4, but it depends on when the production of secretions slows sufficiently that the body can deal with absorbing them naturally. Once the tube is removed, he can begin with small sips of clear liquids, increasing the quantity and variety of clear liquids slowly each day. Needless to say, we are hoping the tube can come out on schedule, tomorrow.

We are waiting for someone from the anesthesiology team to come by to evaluate whether this is "normal" discomfort or something more. Last night, Greg was running a bit of a fever, always a concern for immuno-compromised bodies, so they are watching that, as well as redness which has shown up around one side of the sutures. Blood tests do not seem to indicate the presence of any infection, thank heavens.

Keeping his lungs clear is difficult, as coughing is painful. He is supposed to use the spirometer 10 breaths every hour, but he is not keeping up with this, since it is painful to do. Needless to say, my nagging is ineffective.

What he is doing well is walking. Yesterday he managed two corridors, today he totaled four. He is supposed to "ambulate" twice today, so perhaps he can do this when He receives his first real visitors (other than myself, one from Brian and one from sister Margo). Andrew and family are arriving from Vermont later this afternoon. I will entertain kids outside somehow while they get to see Dad. Even Bridget has yet to visit the post-surgical patient. Since he rests/sleeps so much of the day, and talking is painful and difficult, it is still best to keep visits to family only. Once that tube is removed, I hope he begins to rally and feel a bit better.

This is not the start of the week we had planned...everyone took this next week as vacation so we could all spend time together on Cow Island. Brian arranged to have his house scraped and painted during his time away...I believe the boys, their families and dogs are going to go to the island after tomorrow morning's visit, to salvage some family time. I will stay in Boston with Greg.

I will definitely let you know when he can speak comfortably on the phone, and when it is appropriate to have visitors. Meanwhile, thanks again for all your good thoughts. I hope I do not go into too many gory details (believe me, I am leaving some out), but I do find many aspects of this complicated medical venture very interesting.

Shall we say how grateful we are that we have medical insurance? Especially as this is not the result of bad behavior or poor life style choices?

As we were warned, this will be a long recovery.

Barbara(

Post Surgery Post

From Barbara:

Thank you all for your good thoughts for Greg during his Whipple procedure, which lasted for 9 hours yesterday.

The surgeon (Dr. Tara Kent) reports that all went well and that they did not find anything unexpected.  After they removed the tumor and harvested a bunch of adjacent lymph nodes, they paused while an on-the-spot pathologist examined the margins of the specimen to check that the margins were free of cancerous cells.  Apparently his passed the test, so they were able to move on to the second and more challenging aspect of the procedure--reconnecting the now diminished parts. 

Good news - the pancreas looks normal, which gives Greg a leg up in the recovery process and ultimate resumption of more normal function.  Bad news - the consistency of a healthy pancreas makes it a bit more difficult to work with (I find this aspect of things quite unimaginable), which may have contributed to the length of the operation.

Bad news - the bile duct is still very distended from the obstruction.  Good news - this actually made it easier to work with.

Today was Day 1 of what is projected to be an 8 day hospital stay.  He is still affected by the anesthesia and obviously is in pain, but for someone who has just undergone such major surgery, I think he is doing appropriately.  He is equipped with a pain button he can push as frequently as every 6 minutes, which delivers a dose of nirvana, or at least something that removes the edge somewhat.

The nurse announced mid day that he needed to get up and make it into a recliner type chair, where he was to remain sitting upright for an hour.  This helps clear his lungs and get the blood circulating.  They gave him an hour's warning so he could gear up, both in terms of loading up on the pain med, and just getting psyched.  When the time came, he accomplished the task with less pain than he expected, and was able to attend to a couple rounds of two-handed bridge before declaring exhaustion and the need to return to bed and sleep.  Not bad for day one.

Currently he has tubes draining secretions from all organs involved in the digestive process that were affected by the surgery.  He will not be able to take anything in orally for several days, and they are only providing electrolytes intravenously....no nutrition, as these organs need to heal before being asked to do any work.  He will lose a lot of weight.  Unfortunately, I will no doubt pack on those pounds, as I do my duty, eating for two.

I've requested a private room for him should one become available, as currently he is sharing a very small room.  There was barely space for me, given all the equipment he is attached to.  It will be best to postpone visits for several days....probably until at least Monday, though if he rallies sooner, I'll let you all know.

The big danger now is clots.  They are walking a fine line, as usually they do not start blood thinners immediately after surgery:  obviously the organs need to heal.  But with his history and such a long operation, they have already begun administering anticoagulants.  

The other unknown is the full pathology report on the specimen they removed.  This we will not have for a week.  Meanwhile, we very sincerely thank you all for your love and concern.  I'll try to keep you up to date, but Greg usually posts the blog from his computer, which is in Stow.  I continue to stay at Brian/Bridget's house in Jamaica Plain.  I am counting on Brian's wizardry at the computer to get this out somehow!

Barbara

Day of the surgery, recovering in the PACU

Settling in to Wait for Surgery

I / we have now met with all the major players in my treatment at Beth Israel: Drs. Schlechter (hematology, oncology), Kent (pancreatic surgery), & Levine (Multiple Myeloma).  My hope that there was a “Whipple light” or immunotherapy that could spare me the big operation turned out to be baseless, as there is no alternative to the “full” Whipple.  The internal bits in the area of the Ampulla of Vater (where my tumor is located) are too closely packed in and inter-connected to do anything less than full removal.  Perhaps if the growth had been on the surface (intestine side) of the Ampulla of Vater, I could have been spared the big surgery.  But it is on the hinge of the flap, and who knows how much further up the various ducts, so an isolated extraction is not in the cards.  I must have completely misunderstood the relevance of immunotherapy.  Apparently, that is an option for post-operative treatment, not an alternative to the operation itself. 

So, I am all prepped for surgery first thing on Wednesday, 6/28.  They were going to remove the tube that currently is keeping my liver duct open on 6/20, but the surgical team for 6/28 can do that just as well, so I continue to have a capped tube sticking out of my right side, preventing swimming and complete showers.  I have resumed the treatments for Multiple Myeloma.  I have taken Ninlaro pill #2 and will take #3 this coming Friday.  To take the full course of Revlimid would take me to Monday, 6/26.  But Revlimid interferes with healing and lowers crucial blood counts, so Dr. Levine recommends stopping those treatments the weekend before the surgery.  Yes, the free lambda reading is alarming, but Dr. Levine says Multiple Myeloma is not going to kill me in the next few weeks.  Interfering with healing from the Whipple surgery could have disastrous results. 

Dr. Kent explained exactly what is involved with a Whipple procedure.  Here is a picture of the relevant pieces before the surgery. 

My growth is on the Ampulla of Vater, which is the flap covering where the bile duct and the pancreatic duct empty into the duodenum.  The parts that are circled by the pen on the diagram are the parts that are coming out. The picture makes the pieces all look quite independent and separate.  But another picture, which shows the blood vessels, gives a better impression of how interconnected they all are.  The pen drawing to the upper left is the liver.

Cutting into any one of the blood vessels in that area could be fatal, and they don’t have a way of taking out just parts of the complex.  So, they end up taking out the head of the pancreas, the gall bladder, much of the bile duct, and the duodenum.  Major surgery.

Then they stitch it back up as shown below.  

What is left of the bile duct is attached to the lower intestine, as is the pancreatic duct.  The stomach is sewn into the jejunum, a part of the lower intestine below the duodenum.  The gall bladder acts as a storage area for the juices the liver produces, but apparently the liver can store its juices on its own well enough for normal digestion to occur.  The tail of the pancreas can generally produce the hormones and digestive juices it is responsible for in the absence of the head.  Sometimes there is insufficient insulin, in which case insulin injections are required.

There are lots of risks.  Infection is always a risk in such a large, long surgery.  The places where organs are reconnected may leak.  Someone with my history of pulmonary embolisms will certainly have the risk of a blood clot.  Generally, they monitor these risks and have specific antidotes.  They will have drains next to the 3 areas where the organs are reconnected.  I will wear special socks and have compression booties to keep the blood circulating in my lower legs to minimize the chance of blood clot.  Presumably all sorts of disinfection efforts are standard for this type of surgery.  Then we fall back upon close observation of how the recovery is going and speedy analysis of whatever is going wrong.  Beth Israel has an excellent history of performing these operations, and does more annually than any of the other major hospitals in the Boston area, and apparently I am a good candidate for it.  In the past, they had to resort to the Whipple more frequently than they do today, as not many alternative treatments existed.  Now they only do these operations on patients that are likely to survive and benefit.  Let’s hope I fall into that category.

They acknowledged that this period of pre-op waiting can be stressful, but recommended we head to Cow Island for a few relaxing days during which I am to eat as many good nutritional meals as possible, and avoid any sort of risky behavior: no broken legs, hips, etc., no major cuts….given my track record, this will be a challenge as well.

Thank you all for your good thoughts and concern.  Modern medicine is indeed amazing, but I would prefer to learn about it third hand, not first hand.

Good News, Bad News

The good news is that the results from the MRI on Wednesday, 6/14, are in, and the results are great!  They were concerned about spots on my liver that might have been metastases of the cancer on my Ampulla.  If they had stayed the same size or gotten bigger, then they would be metastases.  But in fact they got smaller, so they probably were a result of the infection I had when my bile duct was blocked.  So, this means that they can concentrate on removing the growth itself.  Either through surgery or through immunotherapy.  They were going to do genetic analysis.  If I have the genes that enable this cancer (which is statistically improbable) then immunotherapy is preferred.  The downside of that eventuality is that Brian and Andrew and their kids will have to worry about the same genes.  We meet with Dr. Schlecter first thing on Monday to determine what my treatment will be.  Meanwhile they are scheduling surgery on June 28^th.

Right now I am rooting for the immunotherapy.  Apparently it is quite targeted and effective, if the cancer is caused by those genes.  The alternative is a Whipple surgery.  This is a monster surgery, lasting up to 6 hours, and doing major reconstruction of your upper GI tract.  Google it to get a sense of how complex it is.  I have been told that the growth I have is pre-cancerous and not highly developed.  Actually, they say it is lucky that the growth blocked my bile duct so that the growth was discovered.  Growths in that area have no symptoms, so they can grow for years without being detected.  So mine was detected relatively early.  My question (which I will ask Dr. Schlecter tomorrow) is with a relatively young growth, isn’t a whipple surgery an extreme solution?  Yes, the growth was strong enough to block my duct, but the biopsy says it is pre-cancerous and if it was discovered at an early stage, mightn’t there be a less extreme solution to correct it?

The bad news is that my Multiple Myeloma is coming back strong.  Tuesday they took blood samples for a variety of tests.  The key test takes 2-3 days to come back.  On Thursday evening I checked the BIDMC Patient Site, and saw that my Free Lambda was 803.  During the analysis of my illness the Multiple Myeloma drugs were suspended.  I had just started Ninlaro and Revlimid on Tuesday, 5/23.  Friday, 5/26, those were stopped.  5/23 my Free Lambda was 345.  The prior 2 tests were 411 and 419, so the trend had been down.  But 803 reverses that trend in an extreme way.  Here is the latest graph:

That is a dramatic uptick at the end.  We thought that we were in dangerous territory when the readings were in the 400’s.  After all the maximum of the normal range is 26, so 419 is 16 times the normal max.  To double that puts us well into an area of major concern.  I sent an email to Dr. Levine Thursday night and followed up with a couple of phone calls Friday.  Finally after 4PM Dr. Levine called me back and told me to resume the Multiple Myeloma medicines.  So I took a Ninlaro pill Friday night, as well as Revlimid and Dexamethasone.  Let’s hope it has a dramatic effect on the next free lambda reading – in the opposite direction.

So the drama continues.  I hope to ease up on the drama, but there will continue to be news until the ampullary adenoma is dealt with.  I’ll keep you posted.