Bye-week for Cycle 3

I am now into the 3^rd week of Cycle 3, where I have no more chemo-therapy sessions.  I do take a final Revlimid pill tonight, but then only “normal” pills for the rest of the week.  I am feeling much better.  I am getting around with just 1 cane when out and about.  If I am just moving about the house, handrails or just trying to walk up straight suffice.  I am still hunched over in the upper back and hunched under in the lower back, so the back does get tired fast.  But it has been a long time since I’ve broken anything, and everything feels as if it has healed as much as it is going to.

The key blood test, named Free Lambda, Serum, continues to improve dramatically.  At the start of Cycle 1 it was 1329.  At the start of Cycle 2 it was 317, a reduction to 24% of the starting number.  That merited a call from Katie Conway, the Physician’s Assistant, to congratulate me.  On 7/17 the number was 54, a reduction to 17% of the prior number.  This didn’t generate a phone call, but the substitute PA last week did say that it was a very good reading.  Normal is still 5.7 – 26.3, so I have a ways to go, but so far the progress has been dramatic and encouraging.

Here is a simple graph of the progress:

The issue this past week is that my INR spiked.  The INR is a measure of how much you are anti-coagulated.  I am back on Coumadin because Revlimid causes a 30% increase in blood clots.  Since I have had 2 pulmonary embolisms, I am pre-disposed to blood clots.  Furthermore, having cracked bones and having cancer both increase the likelihood of blood clots.  Add in the Revlimid, and the danger for me of a blood clot goes way up.  For the longest time my target range for INR was 1.5 – 2.5 because I was playing soccer, and they didn’t want a bruise to cause undo internal bleeding.  But since I am no longer playing soccer and they want full anti-coagulation, the target range is now 2-3.  [Normal people who are not on an anti-coagulant have an INR of 1.]  Well, once in Cycle 2 my INR spiked to 4.4.  That reading was dismissed as possibly an invalid test.  This past Friday, the reading came back as 4.7.  I was told to self-test once I got home, to verify the test.  Well, when I got home, the self-test INR was 5.5.  So clearly this was not a spurious test.  I have not been dealing with the Coumadin Clinic since May, as I was assuming BIDMC was taking over that role.  But they were called in, and recommended skipping the Coumadin for Saturday + Sunday and retesting Monday.  The Monday test was 2.2, well within the range.  So I am to resume my normal dosage, and everybody will monitor what other medicines I am taking to see what corresponds to increases in my INR levels.  5.5 is quite high, but it is only of concern if you are actually bleeding, as you are highly unlikely to clot, thus making the bleeding a problem.  Should I have a bleeding episode while the INR is high, the antidote is Vitamin K.

Friday afternoon, I saw a back surgeon at Beth Israel, Dr Kevin McGuire.  Dr Levine had said to see the back doctor well before the stem cell transplant, as if they wanted to do any corrective surgery, it needed to happen before my immune system is wiped out.  Dr McGuire pointed out several vertebrae that are no longer their normal square shape.  Instead they are triangular, which results in my back being hunched over in the upper back or hunched under in the lower back.  I asked if there was any mechanical fix.  Dr McGuire said there was, but he would not recommend it.  The fix is to fuse various vertebrae and to stick in metal rods.  But the failure rate is quite high, and in 20% of the cases, there are issues where leg function is lost.  Instead, he prescribed physical therapy.  Both to strengthen the back muscles and to loosen the hip or leg muscles that hold the back in place so that my posture can be as vertical as possible.  Certainly physical therapy was able to do wonders after my hip surgery.  I certainly hope it is able to play a similar role for my back.

Barbie & I are now in Vermont, babysitting for our grandson, Tyler.  He is 2 years, 5 months, a wonderful age.  Jabbering away and excited about everything in life.  A joy to be with.  On Wednesday we return to Lake Winnipesaukee, where I discovered that swimming with a life vest does cause the back to stretch out and relax more than regular swimming.

Half way through Cycle 3 (Unposted til 7/30/12)

I am now at the end of Week 1 of Cycle 3.  Chemo-therapy has become a new normal.  I am feeling quite well.  I have stopped breaking any new bones, probably 5-6 weeks ago.  Since bones take 6-8 weeks to heal, I feel as if most of the bones are healed.  It is now much easier to turn over in bed, and for short trips around the house, no canes are necessary.  Of course, that means the canes get lost all too often, but the increased mobility is worth it.

At the start of each cycle, they draw several vials of blood to do an extensive series of blood tests.  The main blood marker they are using to gauge progress is one they call Free Lambda, Serum.  It started out at the start of Cycle 1 at 1329.3.  The normal range is 5.7 – 26.3.  The doctors were quite pleased when the value at the start of Cycle 2 was 317.6, or 24% of the original reading.  Now the value at the start of Cycle 3 is 54.1, which is a further reduction of 17% of the prior value.  The value of 317.6 merited a special call from the doctor.  The 54.1 has not generated any phone call, but it still looks pretty good to me.

There are pretty good antidotes to the primary side effects of the chemo-therapy.  It seems like I take a zillion pills every day.  One of them is to offset nausea, which does a pretty good job.  Another, which I need to take 3 times per day, is to prevent shingles, which I understand one certainly wants to avoid.  I am now taking the steroid both the day I get the Velcade and the day after, and I take a little round pill to fight insomnia.  The Revlimid is supposed to make you tired, so I take that at night, to enhance sleeping as well.  The net is that most of the nasty side effects are counter-acted.

There are a few side effects that survive, but they are not too bad.  Something is awry with my eyes.  During the day they feel dry and at night they generate all sorts of sleepers.  My ankles are slightly swollen, but not badly so.  If I have as much food as I normally did before this, I suddenly become over-stuffed.  That happened last Friday at the pre-wedding dinner out in Greenfield.  I thought since I was at the end of a week with no chemo that I could eat a normal amount.  Not so!  Suddenly I became unable to eat another bite, and I broke out in a sweat.  Then for the rest of the night, I was uncomfortably full and burping.  Today (Sunday at the lake) we had a breakfast of waffles with chocolate bits, which is highly tempting.  I succumbed to temptation, and the same thing happened.  I completely skipped lunch, yet I am still full.  So it goes, which is motivation to control the intake.

I am trying to get an appointment to see a back surgeon, to see if they can straighten out my back.  Even though the bones are mostly healed in the back, it does not mean I can straighten up, as the bones did not crack in uniform ways.  They may be able to add cement of super-glue to even out the vertebrae, thus straightening the backbone.  But I need to do that before the next course of treatment, as the next course of treatment will leave me without any immune system.  But of course, the next available appointment is the end of August, so special favors from my original back doctor are being called in, but there are no definite appointments yet.  Meanwhile the hated back brace and the canes continue to be the norm, which is a pain.

So things are going quite well, in spite of the raft of complaints above.  Considering this is a potentially fatal disease, the course of treatment is going quite well.  I am disturbed reading the literature how many people end up having Multiple Myeloma recur after their stem cell transplant in a more virulent form, but the focus for now is getting through the stem cell transplant.  For that things are going well.  So ignore the complaints above and take away the message that my treatments are going well.

End of Cycle 2

Well, almost the end of Cycle 2.  The difference between Cycle 1 and Cycle 2 is that I am now taking Revlimid, in addition to Velcade and Dexamethasone.  Revlimid is the thalidomide-related drug that costs so much.  I am taking one pill a day for 14-days.  Unfortunately, last weekend there was a change of plans that resulted in me returning to Stow on Monday instead of Sunday.  I thought I had not packed a Sunday Revlimid pill, so I emailed Katie Conway, asking what I should do.  The answer was to skip the day, not to double up on the next day.  Well it turned out that I had packed a Sunday-night pill, so it seemed there was no issue.  But then Monday night we had a memorial service in Worcester, and my job was to pick up Brian at the commuter rail station.  Mentally as I packed my backpack, I said the next step was to pack in my pills.  Unfortunately the mental step was never made actual, so I got into Jamaica Plain without any pills.  Since I take the Revlimid at night (it is supposed to make you quite tired, so better at night), that meant a skipped pill.  I started the pills on Wednesday of the first week, as it took 2 days for the pills to be delivered by UPS.  So in the end I did end up skipping a day, and my Revlimid will continue through next Wednesday.  So Cycle 2 is not really over yet.

I asked Katie Conway (Dr. Levine’s Nurse Practitioner) for all of my blood readings.  I have transferred the to a spreadsheet, hoping they would begin to make some sense.  Unfortunately, very little sense.  Some of the footnotes are instructive.  In measuring the Protein and Immunoelectrophoresis on 5/18 and 6/26 there were footnotes on the PEP and IFE tests.  Don’t ask me what PEP or IFE stand for.  The PEP Footnote reads, “Trace abnormal band in Gamma Region based on IFE identified as Monoclonal IGG Lambda now represents 2% of total protein.  Trace Monoclonal Free (Bence-Jones) Lambda also seen on IFE.”  The IFE footnote reads, “Monoclonal IGG Lambda and Monoclonal Free (Bence-Jones) Lambda confirmed.”  Urine tests were requested both days and footnotes on the U-PEP and IFE Urine tests show different results.  U-PEP: “No protein detected.  Negative for Bence-Jones protein.”  IFE: “No protein detected.  Based on IFE no Monoclonal immunoglobulin seen.  Negative for Bence-Jones protein.”  So I guess I was not excreting any of these marker proteins.

The blood tests do put asterisks against readings that are beyond the normal range.  So I have a number of readings I have highlighted red in my spreadsheet as they are too high (hot), and a larger number highlighted blue, as they are too low (cold).  But none of them make any sense yet.  I either need to do some internet research or speak to someone who can interpret them for me, such as Bridget or Katie Conway.

Generally, I am feeling pretty good.  It has been weeks since I broke any new bones, so the back and ribs are clearly healing.  I probably have another couple of weeks when I need to wear my back brace, and I will continue to take things easy and not do any heavy lifting.  I have an appointment to see the back doctor toward the end of July.  I hope he can do something to correct my posture.  I am now able to walk without my canes for short trips, but I cannot really straighten up my back.  Presumably that is the result of the form in which my vertebrae cracked and have now healed in place.  Perhaps the injection of some super-glue or some cement to help straighten the back would help.  Dr. Levine said to get any such elective surgery out of the way before we begin the transplant.

The two biggest side effects of the medication are 1) the inability to eat very much, and 2) sleeplessness on the nights after taking the steroid.  I can now understand Barbie’s drive to read in the middle of the night.  I do have a pill that fights nausea and insomnia, but it appears to work for about 4 hours.  So at 2AM I am awake and wired.  One night I set up this blog.  Another night I responded to some emails that had been hanging around on my to-do list for a couple of weeks.  Eventually, I take a second insomnia pill and return to bed.  The inability to eat very much was severely tested by the Idlewild picnic.  Freshly grilled meat, interesting veggies, nice salads, and irresitable desserts made for a long afternoon.  I did not succeed in turning enough food down, so I was burping and hiccupping the rest of the day.  Luckily, there was no need to have any supper, so we went for a beautiful sail.  After that my tummy seemed to settle, and the rest of the evening was OK.  But I ate just a fraction of what I normally would have eaten at the picnic.  Maybe next year.

We are up in New Hampshire enjoying gorgeous weather and stress-free life.  Thanks to the men who came up two weekends ago, there are no major projects outstanding that need brute force.  So we are forced to swim, take walks, do little puttering, and take nice sails.  Tough life.