Followup to PN post

I got some feedback after my last post that it seems as if I'm really upset and discouraged.  I didn't mean for it to come across that way.  My peripheral neuropathy is a minor annoyance, but I'm not upset and discouraged by it.  I will gladly continue to tolerate this minor issue as a small price to pay for achieving a Complete Response to my myeloma.  I am a bit anxious about the possibly more severe PN side effects of my forthcoming Velcade treatments, but I'm planning to discuss this in depth with Dr. Richardson, so that we are both on the same page.

In the best case, there may be no side effects over the short time period I will be on this consolidation therapy.  Even if there are some PN side effects, I would hope that they would be reversible.  As a backup position, I may still be able to get the Velcade administered subcutaneously if these side effects start to appear.  Only as a last resort would I consider dropping out of the clinical trial.  So I really have a lot of options here.  In my last post, I was just trying to think them through (engineer that I am was).

I'm having second thoughts about my metaphorical plot of land.  As I observe it, there do not appear to be many indigenous seeds (stem cells) that will allow it to flourish again on its own.  What little growth I've seen so far seems to be from seeds blown in from outside that area.  I may therefore have to reclassify my metaphor.  Instead of an autological stem cell transplant, which I had, my area seems to have undergone an allogenec stem cell transplant (stem cells collected from a donor).  Chief among the donor plants are dandelions, which unfortunately are my second least favorite plant after poison ivy.  Sigh.  Stay tuned for more exciting news about my battle against Poison Ivyloma.

Peripheral Neuropathy

I have been extremely fortunate to have responded so well to my initial MM treatment protocol, as well as to my stem cell transplant.  I am still doing very well recovering from the transplant, and I am slowly resuming some of my normal activities, while still being mindful of the dangers of pushing the boundaries too much.  Next Wednesday I go back to Dana Farber, and I will find out how well my blood counts have recovered and whether some of my restrictions on diet and activities can be relaxed.

While all of this is great, there is one apparent side effect of my treatments so far that has bothered me some.  For the past several months, I have experienced an increase in peripheral neuropathy (PN).  I'm not sure what the source of this is, but it may be related to either the MLN9708 or, more likely, the Revlimid I had been taking.  While my PN has not been debilitating, it has been a source of some discomfort and annoyance, especially at night.  I often experience a high sensitivity on the bottoms of my feet, as well as shooting pains that mostly affect my feet and toes.  These stabbing pains usually only last 5 to 10 seconds, but they can come in waves, which can sometimes make it difficult to fall asleep at night.  Fortunately, this hasn't been an issue during the daytime so far.

I haven't yet taken any pain medications for this, because I don't want to rely on meds if I don't have to.  I'm not really complaining here.  I am very lucky that this PN is only a minor annoyance, and it is a small price to pay for the terrific results I have had so far with my treatments.

Some MM patients have much more severe PN issues than I have.  For example, Pat Killingsworth has to deal with his PN constantly, and takes Oxycodone on a daily basis to deal with the pain.  PN is a known major side effect of Velcade, and many patients suffer irreversible PN from extended use of Velcade.  Last fall, when we attended the MMRF patient symposium, one woman was there on behalf of her husband, who couldn't attend because of the debilitating effects of PN.  We exchanged phone numbers and I later talked to him on the phone.  Unfortunately, his PN due to the Velcade was so bad that he could barely walk.

At some point, one has to question the efficacy of the treatment versus quality of life.  So far, I have been fortunate to have been on the clinical trial for the MLN9708, which causes much less (if any) neuropathy side effects.  However, this is about to change for me.  The treatment arm to which I have been assigned for my transplant clinical trial involves consolidation therapy with Velcade, Revlimid, and dexamethasone.  I will be scheduled for a total of four 3-week treatment cycles, perhaps starting within the next month.

I'm a bit concerned about how the Velcade might affect my PN.  While I can deal with it the way it is now, I don't want it to get any worse.  I plan to have a conversation with Dr. Richardson about this.  In our last visit, I requested that I get the Velcade as a subcutaneous injection, rather than via IV.  Administering Vecade "sub-q" is known to cause less PN side effects than the standard IV dosing.  However, Dr. Richardson nixed this because he said it isn't as effective administered this way.

Dr. Richardson is enthusiastic about this treatment arm, as he thinks it will give the best results.  However, he is not living in my body, and he doesn't have to lie awake at night dealing with PN.  I may have a decision to make here.  I'm not so sure that the benefits of this consolidation therapy are well-enough established for me to sacrifice my quality of life going forward.  If I start to experience any worsening of my PN during this treatment, I may consider dropping out of the clinical trial.  I hope it doesn't come to this, but this issue has been a bit on my mind lately.

Of course, I will keep you informed about how all of this plays out.

Metaphorically Speaking...

There is a long driveway from our house out to Old Wharf Road.  I only tend the lawn near the house, so the property near Old Wharf Road mainly grows wild.  I do try to mow it several times a year just to keep the larger plants and/or trees from taking hold.  However, one of the problems I have continually faced is that this area abounds in poison ivy.

I hate poison ivy!  I am very sensitive to this pernicious rash, and I have contracted it many times over the years.  It seems as if I can get poison ivy by just thinking about it too hard.  I have become a militant about eliminating poison ivy whenever I see it.  However, this is not a easy as it may seem.

Our mailbox is at the end of Old Wharf Road at the intersection of Church Street.  Being a lazy son of a gun, I used to drive out to the mailbox every morning to retrieve the newspaper.  However, since my stem cell transplant, I have been walking to the mailbox every day to get a little exercise.  (I know, I should have been doing this all along.)  As I have been strolling by this patch of ground at the end of our driveway daily, I have had time to ruminate, and it has occurred to me that my battle against poison ivy is a horticultural metaphor for my larger fight against Multiple Myeloma.

I have come to realize that poison ivy is like a disease, which I will call Poison Ivyloma.  Like Multiple Myeloma, Poison Ivyloma is incurable, but it can be controlled somewhat with brush killer (chemotherapy).  My efforts at disease control over the years have only succeeded in achieving Partial Response (PR) or at best, Very Good Partial Response (VGPR).   Relapse is only a matter of time, and the Poison Ivyloma always reappears.

Effect of "transplant" "chemotherapy" on my patch of land

Late last summer, I decided to take more draconian measures to rid this area of Poison Ivyloma.  Rather than do a spot treatment of the poison ivy plants, I sprayed the entire area with Round-Up!  I just realized that this approach was analogous to my recent stem cell transplant.  As with the chemotherapy, melphalin, which hopefully killed off the myeloma cells as well as all the other cells in my bone marrow, my blanket herbicide application had the same effect.  It not only suppressed the Poison Ivyloma, but killed all the benign plants as well, leaving behind a virtual wasteland.  (A "benign" plant is anything that is not poison ivy.)  See the attached picture.

Poison Ivy on my neighbor's land

Just a few feet away from this plot of land, on my neighbor's property, Poison Ivyloma runs rampant!  Here is a picture I took yesterday showing the new growth of the tiny, shiny, reddish-green poison ivy leaves springing to life on his land.  However, there is no sign of this scourge in my "transplant" area.

In terms of its effect on Poison Ivyloma, my "stem cell transplant" process has worked.  The area has achieved at least a Complete Response (CR), if not a stringent Complete Response (sCR) to the treatment.   My hope is that the seeds of all the benign plants (analogous to stem cells) survived over the winter, so that this spring, just as my own immune system is growing back, this area will soon spring to life again, vibrant with benign plants and free of the dreaded poison ivy.

Of course, I realize that this trivial problem of Poison Ivyloma pales in significance compared with my case of Multiple Myeloma.  Nevertheless, I have hopes that both will remain in remission for a significant period of time.

I think that this blog post reveals that I probably have entirely too much time on my hands.  However, this is what you can expect from me on occasion if I don't have any real medical news to report.

Still Feeling Good

It has been almost a month since my second "birthday" with my new stem cells.  I continue to feel good and am expanding my activities every day.  On Patriots Day we went to Plum Island and walked along the beach.  It was almost 90 degrees, and the beach was crowded, almost like the middle of summer!  My diet has expanded to include take-out pizzas, and we have even been out to eat at restaurants twice.  Of course, I have been careful not to eat any raw salads or vegetables, and I make sure everything is well cooked.  I can't wait to have a medium rare steak again!

Another good sign is I think my hair is starting to grow back again!  I can feel a little peach fuzz on my head.  I sure hope that fills in soon.  I don't particularly like my Yul Brynner/Telly Sevalis/Bruce Willis bald look.  The only problem is...what am I going to do with all these hats?  I'll need to hold a garage sale for used hats.

My friend, Bob, went back home to Seattle on Sunday.  It was a great visit!  While here, he helped me to fashion and replace a rotten deck post (rather, I helped him).  In this picture of Bob (dressed as a bumble bee) standing next to the new post, he looks a bit pained holding the paint brush as a prop.  This is probably because he hates to paint.  He actually sat in a lawn chair doing a crossword puzzle while watching me do the painting!  (Yes, I dutifully wore a mask and gloves while painting.)  Seriously, though, it was great fun to be outside in the beautiful weather doing a project with Bob.  We've often done building projects together at each others' houses, so it was like old times.

I don't have to go back to Dana Farber for another two weeks.  Yippee!  I hope that by then my blood test numbers will have improved enough for me to resume more normal activities.  Until then, I will try to be careful to eat right and avoid crowds.  The toughest thing for me is not working in the yard, especially this time of year.  Gretchen will have to mow the lawn (which needs it now).  The rest of it, such as edging, mulching, trimming, etc., will have to wait until next year, or at least until the fall.  Sigh!

Quick Update

I apologize for the absence of recent blogs  I've been pretty busy, which is a good thing.  Several friends (Cindy, Anne, and Denise) have come to visit over the last few days.  Jason also came up from Connecticut again yesterday, and Jeff and Christine were here for dinner last night.  My good friend, Bob, arrived today from Seattle to visit for the next 3 days.  It's really good to see him.  As usual, I have a house project for him to work on while he is here, so it's like old times, only this time I have to watch rather than participate.

Yesterday we saw Dr. Richardson to followup on my stem cell transplant.  My blood numbers have all improved greatly since last week.  My white blood cell count, hematocrit, and platelets are all nearly back to their values before I went in for the transplant!  My platelets are actually back into the normal range, which is amazing, since they were so low I needed a platelet transfusion while in the hospital just 11 days earlier.  I am doing so well that Richardson told me I don't have to go back to see him for another three weeks!  This is the first break of that length I've had since my diagnosis back in July.  If I weren't so constrained for the next month or so, we would want to take advantage of that and go someplace really cool.  Oh well.

Except for being tired and usually needing a nap during the day, I'm feeling great!  I haven't needed my anti-nausea meds for the last week or so.  So far, this whole process has been much easier than Gretchen or I anticipated.  I just hope it continues.

I really appreciate all the wonderful support I have been getting from my family and friends.  This has boosted my spirits greatly and I think has played no small part in my quick recovery.  Thank you!!

Followup with Richardson

Yesterday we saw Dr. Richardson for a followup visit.  My numbers are looking good, and I didn't need to get another blood or platelet transfusion.  He was very pleased with my progress, and he reiterated how fortunate I am to be on the arm of the clinical trial that involves consolidation therapy followed by Revlimid maintenance for 3 years.  We exchanged high fives over that.

As for the confluence of events that led to me having the stem cell transplant now and for being selected for this arm of clinical trial, Dr. Richardson said it's like I bought the best possible insurance policy at the best possible time!  I can't think of how things could have worked out any better.  Any doubts I might have had about choosing this path have long-since vanished.

Here is how this whole thing seems to be shaping up.  I achieved a Complete Response (CR) from the MLN9708 clinical trial after 7 cycles, almost, but not quite, a stringent Complete Response (sCR).  However, there is a good chance that the chemotherapy and the ASCT might drive things further down so as for me to achieve sCR.  That, of course, would be the ideal outcome.  I should find out in 3 months.  However, even if that hasn't happened yet, the consolidation therapy of Velcade/Revlimid/dexamethasone (VRD) might do the trick.  Then, as an added bonus, I will go on Rev maintenance, which has been shown to be very effective in preventing relapse.  Serendipitously, Revlimid also has also been shown to be very effective at countering the high-risk t(4;14) chromosome translocation that I have.

This is what Dr. Richardson means by saying,  "Hit it as hard as you can as fast as you can".  I don't know how much harder or faster I could be doing this.  And I haven't sacrificed any future options by taking this path.  I still have stem cells in reserve for another transplant should that become necessary.  Because of my age, if I had deferred on the transplant at this time, I still would only have the option for a single transplant in the future.  So in retrospect, this was kind of a no-brainer!

It is well-known that MM patients who achieve sCR after ASCT have the best chance for a long-term remission, with a Median Time to Progression (TTR) of 5 years or more.  Of course, I'm not a statistic, so who knows how long my remission may last?  Months?  Years?  Right now, I'm optimistic that I may be able to enjoy a nearly normal life for years into the future.  And what about when the MM returns (as it must)?  By then I hope more medical miracles will have come to pass that will help me back into remission again, or even cure this damnable disease! 

ASCT Day +12 - There's No Place Like Home

Today was the big day!  My numbers came back astronomically high, with a WBC of 4.55 and an ANC of 3,777, which sure eclipses yesterday's results of 1.13 and 791!  After being briefed on the thousand and one things I'm not allowed to do, by 12:30 I was officially released from BWH.  Free at last, free at last, thank God Almighty I'm free at last!

It was so nice to get back home.  I enjoyed the smell of springtime, the blooming of the forsythia, the buds on the trees, the grass struggling back to green, and especially, reuniting with our cat, Sophie.  I really missed her, and I've convinced myself that she missed me too.

Brian drove up from New Jersey this morning, and he will be staying until Tuesday.  It's great to see him again.  This should help give Gretchen a break from having to take care of me 24/7.

Speaking of that, Gretchen has been amazing through all of this.  I don't know where I'd be without her.  She has constantly been by my side throughout this whole Multiple Myeloma journey, giving me support and encouragement when I've needed it, admonishing me when necessary, and just being my friend.  She has dropped or rearranged all the things in her life so as to accommodate to my new reality.  It makes me realize more than ever how lucky I am to have her in my life.  Thank you, my love.