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Tuesday, March 31, 2015

Farber Visit

Yesterday I went to the Farber again for my monthly checkup and (gulp!) a bone marrow biopsy.  Fortunately, my blood test numbers still look great.  The biopsy was another matter altogether.  My nurse practitioner, Katherine, was very sweet, but I missed Zack.  Zack was very good, so I was apprehensive without him.  My concern may have contributed to my being more sensitive to the pain of the procedure.  Ouch!  In any case, it was pretty uncomfortable, so Katherine suggested that the next time I should consider using medication.  I agreed with her, so next time I plan to be in la la land during the biopsy and it will be great!  I think I'm done with this macho routine.  As I get older, I think I'm ready to let go of my readiness to meet the challenges of life with all this bravado.  OK, just give me medicine.  It's not like I'm a war prisoner trying to protect our country's secrets.  I don't think I'd be very good at that.  So just knock me out, OK?

In my last post, I failed to note a significant milestone in my life.  On March 20, I celebrated my 3rd birthday anniversary of my new immune system.  We were in Hawaii at the time, so the event kind of passed unnoticed.  I'd like to take the time now to celebrate that.  Yippee!  Happy third birthday to me!  I am still in remission, which is awesome!  In another few months, I will be done with the Protocol I'm on, and I will stop taking the Revlimid.  After that, I will just go on living my life and wait for the inevitable to happen...eventual remission.

How long will that take?  I don't know.  I just read an online article about the utility of using flow cytometry to measure Minimal Residual Disease (MRD) in MM.  Here is a link to the article:  The basic message is that no MRD after initial induction is a really good thing and provides an independent measure of future prognosis.

Fortunately, I was diagnosed with no MRD after my initial MLN9708 treatment and also after my ASCT.  So I should be on the upside of the survival statistics.  Yes, I am, but from these data, that doesn't bring me a whole lot of comfort.  For those who achieved MRD, the median Progression Free Survival (PFS) was about 5 years, and the Overall Survival (OS) was about 7-8 years.  Wholly crap!  Based on these statistics, I don't have a lot of time left.  On the bright side, these data were based on earlier treatment regimens and don't account for all the new research and the myriad of recent treatments available for MM patients.  Therefore, I remain hopeful for a number of years of PFS remaining, and when the inevitable recurs, I expect a host of new options to extend my OS for a long time. So that's my optimistic assessment on all this.

There is a great miniseries now airing on PBS:  "Cancer, The Emperor of All Maladies".  It is presented in three 2-hour segments which aired yesterday, today and tomorrow.  I read the book and it is outstanding.  If you aren't watching it, look for it to repeat.  It illustrates how important Dr. Sidney Farber's influence was in the fight against cancer, along with many others.  It's a very thorough analysis of a very difficult disease but gives a lot of hope for the future.

It's all good!

Monday, March 23, 2015

Back from Hawaii

Sunrise over Haleakala volcano
After 8 days in beautiful Maui, we're back to the frozen tundra of Massachusetts.  Whoopee!  The calendar says it's spring now, but you'd never know it.  There is still snow on our roof!  Oh well. It was a wonderful family vacation.  One of the highlights was to take a tour to the top of the 10,000 foot altitude inactive volcano, Haleakala, to watch the sunrise.  We had to leave our hotel at 2:30 am (grog!), but it was so worth it.  What a beautiful sight!  Unforgettable.  Some of our group took a different tour which provided bicycle rides down the mountain after the sunrise.  We didn't do that, but I can live with it.

Sunset from the Marriott Hotel
We spent most of
the rest of our time at the Ka'anapoli Hyatt Regency hotel beach and pools, which was lovely.  I basically parked my ass on the beach while watching the younger, fitter members of our family swim, snorkel and surf the waves.  I was somewhat wistful thinking about how I would have been out there doing all that in days past.  Damn!  Some parts of getting older are not that much fun.

I passed a milestone while in Hawaii.  On March 20, I celebrated my 3rd birthday with my new stem cells!  I almost forgot about it, until someone reminded me.  One should never forget ones birthday.  Happy birthday to me!  I am so lucky to still be in complete response after three years.

All in all, it's good to be back home.  While we were away, our home decorator, Amy, did a lot to help unpack, organize and add homey touches to the house.  It looked great when we got back!  We love our new home, and we are starting to get settled in.  For anybody who cares, our new address is 10 Dole Place, West Newbury, MA  01985. 

Next Monday, I go back to the Farber for a bone marrow biopsy (ugh!)  My favorite PA, Zack, is no longer at the Farber, so I have to trust myself to one of the other PAs.  At best, the experience is not pleasant, but I just hope it is not too painful.  I'm also scheduled to get my final set of immunization shots, which include live viruses.  Mary and Muriel decided to postpone those shots until after our vacation because of possible adverse reactions to the shots. 

It's all good.

Monday, March 9, 2015

Prostate Followup

As you know, I had an elevated PSA (prostate specific antigen) test result of 10.5 last November.  That's above the normal range of 6.5-7.5 for someone my age, and well above the 2.0 result of my last test back in 2009.  We decided then to wait a couple of months and retest to see if that result was an anomaly or indicative of a possible problem (i.e., prostate cancer).

Last week I had my blood drawn for the PSA test again, and today I followed up with my PA, Susan Palmer to get the results.  She burst into the exam room and blurted out, "Don't you just love good news"?  I responded, "Does that mean that you bring me good tidings of great joy?", or something to that effect.  We sat down at her computer and she showed me the latest results.  My PSA level has dropped nearly in half to 5.3!  Wow!  That is the kind of tiding I like to get. She didn't have an explanation for why there was such a dramatic difference, but she did say that if prostate cancer was present, the numbers would keep going up, not drop like that. 

We then had a discussion about what to do next, if anything.  They typically advise that men aged 75 or older stop taking the PSA test, because even if prostate cancer is diagnosed, life expectancy is not necessarily increased by undergoing treatment, which has its own risks and side effects.  Their recommended cutoff age for PSA testing is even younger for men with "comorbidities".  That's a fancy medical term for a concomitant but unrelated pathology or disease that may shorten life expectancy.  In my case, the elephant comorbidity in the room rhymes with Multiple Myeloma.  Based on that, I would have a good reason at the age of 72 to say "Sayonara, Susan", and forget about ever getting my PSA tested again in the future.  After all, look at the much ado about nothing that all this botheration came to.  If I hadn't had that test done in November, I would still be fat, dumb, and happy.

However, I'm optimistic, and I'm not ready to treat my MM comorbidity as an early death sentence.  At least not yet.  Considering that I am still in stringent complete response and with all the recent progress in developing new drugs and treatment options, I'm planning on giving Methuselah a run for his money.  Therefore, I have opted to get my PSA tested again a year from now.  If it's OK then, I may do it again one more time and then fuggedaboutit!

We are slowly moving into our new house.  We are still surrounded by random unmarked boxes and of course, I can't find anything.  Today the house cleaners came to Old Wharf Road for the final cleaning, and we had a new granite kitchen installed at the new house.  However, the plumber still has to come to hook up the fixtures.  Tomorrow the lawnmower guy will pick up my riding mower from the old house to do a spring service and then deliver it back to the new house sometime.  Wednesday, we do the final walk through with the new owner, Nancy, and turn over the keys.  We still have to pack, as we are leaving for a Hawaiia vacation with the family on Thursday.  I have to say that we are both in a bit of a tizzy right now.  We haven't yet had a chance to look forward to our vacation, but I think that it is going to feel really good to leave this winter from Hell behind us and sink our toes into the soft warm sandy beaches of Maui.  Aaaah.  Aloha!

Tuesday, March 3, 2015

I'm Back

When I last blogged, I was looking forward to leaving the subzero weather in Massachusetts to golf in 40 degree weather in Ocean Isle Beach, North Carolina.  Well, as it turns out, that was pretty optimistic as the weather was mostly in the 30's there last week.  Considering that it was 9 degrees below zero here the morning I left here (!!), I can't really complain.  Thank goodness I packed warm clothes!  We had two decent golf days with weather in the 40's, but we had to really bundle up for the rest of the week.  One day got washed out completely with torrential rains, and the fairways were pretty slushy for most of the week.  But you know what?  We still had a great time!  It's an awesome group and we enjoyed each others' company, with lots of jokes, ribbing, and banter.  The meals, prepared by our resident cooks, Paul and Joe, were delicious as usual.  What a great time!  It was a nice respite from the craziness of the move.  I felt bad about leaving Gretchen alone to deal with all the unpacking, but she assures me that she was fine with it.  She had a lot of friends helping her last week, and she said she had a lot of fun, so I guess it worked out well.

I went to the Farber yesterday for my checkup and Zometa infusion.  I'm happy to say that my numbers are still great!  My recent iron infusion has still overcome my previous anemia, so those numbers remain good as well.  My most very favorite nurse, Heather, administered my Zometa infusion, and she asked how I was doing.  She was very happy for me, but she also told me about how many patients she sees who are not doing so well.  It then really hit me again how very lucky I am right now!  I need to count my blessings every day that I am still disease free!  It has been almost 3 years since my stem cell transplant, which is amazing.  Thank you Paul Richardson, thank you for the clinical trial with MLN9708, thank you for the stem cell transplant clinical trial, and thank you Dana Farber Cancer Institute.  What more can I say?

I recently blogged about my MM patient friend, Steve, from Buffalo, who enlisted in a clinical trial for MM at the Farber for the experimental drug, ibrutinib.  Here is a link to that posting:  Ibrutinib clinical trial.  Unfortunately, Steve didn't find a benefit for himself from this trial, so he has dropped out, but there is encouraging news about ibrutinib.  I picked up the most recent issue of "Inside the Institute" at the Farber yesterday, and it had an article about the FDA approving ibrutinib for a rare blood cancer closely related to MM: Waldenstrom's macroglobulinemia.  Ibrutinib targets a protein called BTK in malignant B cells.  It has already been approved for three other types of blood cancers.    This shows that a single agent can be effective against multiple types of cancers, providing they spring from the same molecular mechanism.  There is still hope that it can be effective against MM.

There are more and more results coming out these days about therapies that work for multiple cancer types.  Ibrutinib is just another example.  Despite my friend Steve's disappointing experience, this drug may provide some benefit to other MM patients.  It is just another arrow in the growing quiver of drugs that may provide either a control or possibly even a cure for Multiple Myeloma.  Let's hope.