A Free Man

My last post was from the hospital on 2/21, when the tedium of the hospital was overwhelming.  I did get out on 2/26, and I spent the next 16 days with my son & daughter-in-law in Jamaica Plain.  They have 3 boys, ages 5, 3, & 6 months, so life there was rarely boring.  Generally the boys were always interested in having stories read to them, fighting with each other, running the track that connects their living room, dining room, kitchen, & front hallway, and torturing their parents.  I also became a surprisingly bad player of Connect-4.  To avoid interfering with the daily activities of their nanny, I endeavored to get out during the week and use my presence in JP as an excuse to visit Boston cultural icons I had never (or not recently) visited.  I had to be accompanied by a responsible adult, as who knew when a nasty side effect of the CAR-T cells would strike me.  I managed to visit the New England Aquarium, the Harvard Museum of Natural History, the ICA, and the MIT Museum before a combination of a bad cold and a major snowstorm shut the Boston cultural tour down.  The MFA and the Isabella Stuart Gardner Museum were next on the calendar, but I’ll have to drive in from Stow to take them in.  My actual and would-be companions (Sandy, Dave, Scott, Paul, Myle, Kate, & John) were not always recognizable as responsible adults, but I appreciate their being willing to put up with my company.

I have been a home-dweller, not a guest imposing, since Wednesday.  It is great to be on home turf.  In spite of wonderful hospitality and very entertaining grandchildren in Jamaica Plain, there is no place like home, to coin a phrase.

Originally I was going to have the 30-day bone marrow biopsy (bmb) on Wednesday, which was rescheduled from Friday due to a doctor conflict.  But they neglected to tell me not to take my lovenox shot Wednesday morning, and I dutifully jabbed myself, in spite of hating the process.  Apparently a bmb is incompatible with lovenox, so the bmb had to be postponed.  But they did take all sorts of blood tests on Wednesday, so they only had to take a few on Friday.

The bmb is quite an elaborate procedure.  They have you lie face down on an examination table.  Lying face down is difficult for me, as the curvature of my back means it takes me quite a while to flatten out.  Doing so while lying on my back actually feels quite nice, as the tightness of my chest gets relieved, and it feels quite good.  But lying face down does not feel so good, and the result is that you can only see the people on the side where your face is turned.  They pick out the part of the hip they are going to aim for, and mark it with a magic marker.  Then they surgically clean the area and drape it with sterile dressings.  Then they shoot a number of pain killers in the immediate area, to completely numb the surface.  The shots themselves hurt a bit, but presumably they are preventing much greater pain.  They ask periodically if you are feeling any pain, and generally the answer is NO.  But just think, the Civil War was not that long ago, and they did amputations without any anesthesia.  We have come a long way.  Eventually they start to excavate and penetrate.  It doesn’t hurt, but there is enough pressure back there that it feels like it should.  Clearly something invasive is going on, and it takes just about all the doctor’s strength to penetrate the bone.  They go in several times, first pulling out actual bone marrow, then pulling out an aspirate, or liquid from the bone interior.

About half way through the process, Doctor Nahas remarked that my Free Lambda reading on Wednesday was a big improvement.  I hadn’t checked the BIDMC Patient Site to find Wednesday’s result.  570.4!  Down from 875!  That means the CAR-T cells are working.  That is a 35% reduction.  Still a long way to go (normal max is 26), but strong movement in the right direction.  Here is the graph of the last 18 months of Free Lambda:

Suddenly, all the pulling and tugging in my back/backside was irrelevant.  Anyway, they don’t get the results of a bmb back until at least a week out, which makes the Free Lambda test seem lightning quick in comparison.  Last time we had to try to convince ourselves that a near unchanged Free Lambda reading was actually good because it wasn’t getting any worse.  Such a rose-colored-glasses interpretation is no longer necessary.  Things are really getting better, to a significant degree.

I came home to my normal computer, my normal bed, a kitchen where I’ve known the rules for a long time.  I had 1800 emails to wade through.  As of today I am all caught up.  I am back to current state as Treasurer of the Stow Community Housing Corp, which owns and runs 140 affordable apartments in Stow.  The last 2 snow storms have resulted in a great deal of tree damage in our yard, and we had a crew come with a bucket crane to cut out all the broken branches.  Then they ground all the branches they could get to into wood chips.  The place looks much better, but once the snow is gone there will be a massive cleanup required.  Then just today people came to fill in the trench across the driveway cut to lay the cable from the barn to the house for the solar panels.  They cut the trench back in December, but cold weather and then snow foiled all the dates set for filling in and finishing off the trench.  In other words, life is getting back to normal.

Until the positive reading on the Free Lambda, my planning horizon was at most a month.  At first the hospital stay and the JP stay dictated what I would be doing.  Now that we can see that things are really getting better, perhaps we can look a little further out.  I have decided once again to organize the Greg’s Legs team to participate in the Boston MMRF 5K Run/Walk on 4/29.  So everybody should expect a recruiting / donation begging email in the near future.  If you don’t drop me an email, and I’ll add you to the dunning list.  I will contact the back doctor to see if anything can be done to straighten out and lengthen my back.  We spoke with him back toward the end of January, but he said as long as the effects of Multiple Myeloma are still being felt, making repairs to individual vertebrae would only result in neighboring vertebrae breaking.  The timing of when this should take place is probably a function of how fast the Multiple Myeloma recedes.

My overwhelming emotion is gratitude.  Thankfulness that I have been lucky enough to participate in the CAR-T cell clinical trial.  Hopeful that my improvement continues to the point where I reach the state of “no observable disease” which so many other participants in these clinical trials have achieved.  To see the results of this clinical trial as announced at the American Society of Hematology annual meeting in December see www.epgonline.org/us/news/results-from-phase-i-trial-of-bb-2121--a-car-t-cell-therapy--for-multiple-myeloma---celgene---bluebird-bio.  This data was released just about the time I was being enrolled in the trial, so it does not include me.  And many of the participants at that time had not been in the trial long enough to have any results.  But clearly the results were very positive for those in the trial for an extended time period, and there is no reason I should not see the same results in time.  Again, gratitude.  Wow, have I been lucky!

Bored Silly!

It is now day 14 of my stay here at Beth Israel as part of the CAR-T Cell clinical trial.  I hope to be released next Monday, 2/26, so the end is in sight.  I am in a Phase 1 clinical trial, which means they are looking for side effects.  So far, I have had none.  I am feeling very good, except for my back.  Every day they ask if I have experienced all sorts of bad things.  My answers are always No.  I am told I look good, much as I feel good.  To give them something to note, I inform them that I find it very hard to find a comfortable position in the hospital bed.  But that is nothing new.

I do lots of reading.  The Confession, a John Grisham page-turner.  Radiance of Tomorrow by Ishmael Beah, a novel set in Sierra Leone.  Born on Third Base by Chuck Collins, a good book that everyone should read.  Waking up White by Debbie Irving.  Recommended by my sister Margo, there are remarkable parallels to the Jones family upbringing.  Irving grew up in Winchester, adjacent to Lexington where we grew up.  They vacationed in Maine, just as we did.  All 5 kids attended top flight colleges, just as we did.  All grew up blissfully unaware of their own privileges or the handicaps others had to endure, just as we did.  A remarkable book.

But I for one can only read so much.  Then I lose consciousness.  So, I throw in a little exercise.  I’ve gotten a couple of nurses to climb stairs with me, but most of the nurses are not very keen.  I impose on my visitors, most of whom humor me.  By the time I’ve climbed up 3 flights, I am winded enough that I have trouble keeping up the conversation.  There are the Olympics on TV, but I find I have trouble pretending to care.

Here is Bridget, the nurse who administered the infusion of CAR-T cells a week ago Monday.  

She has just extracted 4 vials of blood from me for the study.  They seem to be extracting lots of blood, lots of times.  Last night it was 9 vials.

You also always have a PCT (Patient Care Technician) assigned to you, who comes every 4 hours and takes your ‘vitals’.  Blood pressure, temperature, heart rate and oxygen level.  Here is Pierrette, with 

the portable device that does the vitals.  The PCT also arranges the supplies for the shower, which is well down the hall, and a major event every morning.

I do spend a certain amount of time on the internet, trying to understand just what I am going through.  Here is a YouTube video recommended by Evadne Moy, a member of Barbie’s chorus who has also supplied several of the dinners that have relieved me from having to eat hospital food 24X7: https://www.youtube.com/watch?v=RpkgLzyUUAA.  I wondered if this video, which is remarkably understandable for a layman, gave an accurate picture of the process.  So, I asked Elizabeth, the person shepherding me through the clinical trial, if she would recommend a link explaining the CAR-T cell mechanism.  Here it is: www.cancer.gov/about-cancer/treatment/research/car-t-cells.  And here is Elizabeth:

Elizabeth comes by every day, and most days gets to administer some questions that indicate if I am losing it mentally.  Counting backwards from 100 by 7, following directions, replicating a drawing of 2 pentagons that overlap.  Apparently if I ever experience the neurological symptoms they are looking for, I won’t be able to do these tasks in a characteristic way.

A big issue for a while was where I would go after being released on 2/26.  The choice was to an apartment close to the hospital or to Brian & Bridget’s in Jamaica Plain.  The problem with JP is 3 boys ages 5, 3, & 6 months.  The older 2 are in day care or pre-school, so they are exposed continually to colds or the flu, and they are germ factories.  The problem with the apartment is that you are supposed to be accompanied by a responsible adult at all times so that if you have a side effect or get sick, they can make sure you get back to the hospital.  Barbie, with the chorus and piano teaching cannot do it Monday afternoon – Friday morning.  We were about to put out the SOS when the doctors discussed my case last Friday.  They recognized the logistical issues associated with the apartment and decided that I could reside in JP.  They made it clear that precautions should be taken (wearing a mask when with the boys, washing hands often), but I can enjoy time with the grandkids.  FAR better than a monastic life in an apartment for 2 weeks!

So, is there any sign of the dreaded CRS (Cytokine Release Syndrome)?  So far none.  They don’t actually measure cytokines.  They measure a liver product, CRP (C-reactive protein) instead.  It would spike if CRS were to happen.  So far, my CRP has been totally normal.  Initially they were taking blood every 4 hours and measuring it.  Then every 8 hours.  Now once a day.  The scale on this graph is 0 – 50 so that minor bumps in the normal range (.5 – 3.0) don’t look significant:

I may be bored silly, but I am incredibly grateful to be part of this program.  If being totally bored is the cost of having all my Multiple Myeloma cells attacked and destroyed by CAR-T cells, I’ll pay the price.  With enthusiasm.  Bring on the terminal boredom!

Today’s the Day! [Actually yesterday, 2/12/18]

I am due to get my weaponized T-cells today, probably early in the afternoon.  I’ve been in at Beth Israel since last Wednesday, receiving 3 days of chemo, followed by the weekend to allow my system to work off the toxicity.  The three days of chemo are described as a lymphodepletion process.  The idea is to reduce the number of white blood cells in your system so that the introduction of the CAR-T cells will go smoothly.  Apparently, there are T-Reg cells among the white blood cells that can decide the CAR-T cells are foreign and cause them to be rejected.

Well, I never finished this posting before I received the CAR-T cells.  They gave me a Tylenol and a Benadryl injection before I got the cells, and the Benadryl sure made me sleepy.  Before noon the T-cells came in 2 very small packets.  Clear liquid, and not very much of it.  Yet all blood cells are so small that the number of cells was in the millions.  They had a drip of saline solution going and mounted the T-cell packet above the saline solution, so it would receive priority.  In fact, the T-cells dripped very slowly.  Then the nurse put the T-cell packet below the saline solution and induced saline solution to flow into the T-cell packet.  The purpose was to flush out the last of the T-cells in the packet.  Good to the last drop!

Infusing the T-cells took about 2 hours.  Then they proceeded to take my vital signs (pulse, % of oxygen, temperature, blood pressure) every 5 minutes for the first 30 minutes and then hourly for the next 4 hours.  Apparently, they do this in part for their own purposes to detect any adverse reaction quickly but also because it is required by the clinical trial protocol.  The results are entered into the computer and shared with the people running the clinical trial.  At hour 4 they also took a blood sample which will be used to measure the level of cytokines in my system.  Cytokines are the C in CRS, which stands for cytokine release syndrome, the most likely and most serious side effect of CAR-T treatments.

Originally, I thought that CRS was the result of the CAR-T cells destroying Multiple Myeloma cells.  Not so.  Instead it is the result of the new T-cells setting off a chain reaction of immunological signaling which expresses itself in the release of cytokines.  Cytokines signal that there is something to react to.  But clearly the chain reaction is too much of a good thing.  It is believed that the 1918 worldwide flu epidemic was so deadly and killed so many healthy people at the prime of their lives because it induced a strong CRS reaction.  It spared the elderly and the frail because they didn’t have strong immune systems.  At any rate, that is one of the main reactions that they are looking for.  I almost want to have a CRS reaction, as it will indicate an active immune system.  They do have ways to treat it, depending on how severe it is.

So now it is a wait-and-see game.  They will take a blood sample every 4 hours for 72 hours (3 days!).  The day doctor just checked in and informed me that the blood sample is used to test for a protein marker that indicates the level of cytokines.  The test is not the level of the actual cytokines, but a marker that indicates how active the cytokines are.  So far, I feel fine.  But obviously my sleep will be more interrupted than normal, as they take both vitals (which they always do every 4 hours here on Feldberg 7) and a blood sample.  Plus, they are doing tests of my reflexes (eyes), coordination, strength, and responsiveness.  So far, I am passing the tests, but I suspect I will make their day if I ever fail one.

I will keep up the play-by-play as long as there are interesting things to relate.  But the hope is for nothing visible to happen.  As they say, boring is good!  Today is day 0.  They will take a bone marrow biopsy on Days 14 and 30, which will indicate the level of disease remaining.  You will certainly get a post (happy or sad) then!

A Little Drama

Just a short update.  Or so we thought.  Friday, Jan. 5 I got a call from my oncologist, Dr. Levine, reporting that the Clinical Trial did not want anyone currently on Coumadin, which I have taken for many years.  I was instructed to stop the Coumadin and come into the clinic Monday to get a prescription for Lovanox, a different form of blood thinner. So Barbie (my chauffeur) and I went in to Beth Israel Monday for a 2:30 appointment.  Come 4:00, they still hadn’t called me, so we raised a ruckus.  Around 4:20 they led us back to an interview room.  The doctor finally arrived at 4:35, only after Barbie called our favorite nurse, MJ, onto the case. This was Dr. Nahas, Dr. Levine’s replacement, as Dr. Levine, most inconveniently, began a leave of absence that Friday, and so I will now be seeing a new doctor.

But the conversation we had was not just about Lovanox.  Instead Dr. Nahas started reviewing my entire case.  In fact she questioned whether I qualified for the clinical trial.  Was my Myeloma active and had all of my treatments turned out to be ineffective?  Whoa, what is going on here, was both Barbie’s and my strong reaction.  After all, I had stopped all treatments, relatively ineffective though they were, a month ago in order to purge my body of those chemicals, in preparation for the January 11 harvesting of my white blood cells!  Dr. Nahas went off to speak with the doctor in charge of the clinical trial, leaving us in a state of confused outrage.

The issue concerned the last drug combo I was on, Carfilzomib, Dexamethasone, and Pomalyst.  Was it deemed “effective” or not?  It was hard to tell because I only got 2 treatments.  The treatment did reduce the Free Lambda reading, but only slightly and it remained in the danger zone (over 800).  If you expect the Carfilzomib to be especially effective, then it was not doing its job.  Which is clearly what Dr. Levine had concluded, but the new doctor – or perhaps the person in charge of the trial with whom she was speaking on the phone --still had to be convinced.  Our recounting of considerably increased pain and reduced mobility since October did not suffice as evidence. So she ordered an X-Ray bone scan and an MRI.  By a miracle we were able to accomplish both that evening, though it meant Barbie sacrificing an important chorus rehearsal and my missing a Friends of Nigeria conference call.

We finally got home at 9:30 that night, exhausted.  I got a phone call that night at 10 from Dr. Nahas saying I had 2 new compression fractures in my lumbar spine and 1 new one in my thoracic spine, and these counted as evidence of active Multiple Myeloma. Hey, we could have told her I was falling apart without those tests.  At any rate, I was allowed to remain in the clinical trial, and I got a Lovanox prescription the next day.  So after staying in isolation for 2 days, I had my white blood cells extracted Thursday morning. That involved putting in a central line for extracting my blood and an IV to reintroduce my blood after the white blood cells had been extracted in a centrifuge machine. All went smoothly, and that afternoon/evening I got a dose of carfilzomib, etc. The next day, Friday Jan. 12 I got a second dose of carfilzomib late in the day so that we were in the thick of traffic getting off to Vermont for our granddaughter Emma’s birthday weekend.

At the moment, participation in the clinical trial is moving forward, which is positive.  On the negative side, this means I have a raging disease.  But if all goes well, maybe not for much longer.  Now I must stay healthy for the 3-4 weeks until the next step – the return of the weaponized T-cells!

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.