Search This Blog

Tuesday, October 25, 2016

Blindsided

An American tourist visiting London tries to cross the street.  Instinctively, he looks to the left first.  Finding it clear, he steps off the curb, looks to the right, and is immediately flattened by one of those double-decker buses they have over there.  Whoops!

I've been feeling a little bit like that lately.  For a long time now, my multiple myeloma journey has been sailing along on cruise control.  My numbers have been fine with no evidence of monoclonal gammopathy. I am now on Cycle 54 of my Revlimid maintenance therapy.  The only glitch was a reduced iron level in 2014 causing some anemia.  I received an iron infusion which remedied the problem.  Then this happened again this year, which I mentioned in my last post.  I received another iron infusion in September, which has again boosted my red blood cell counts back up to normal.  So all is good, right?

As I metaphorically look to the left, I see an undisturbed 4 plus years of my MM in complete remission.  The road is clear.  However, as I step off the curb and look to the right, Bam!  The double-decker bus turns out to be the spectre of Myelodysplastic Syndrome (MDS).  MDS is a form of blood cancer where the bone marrow doesn't produce enough healthy blood cells.  This is a serious blood disorder which has a high risk of becoming Acute Myeloid Leukemia (AML), an even more serious blood cancer.  It has long been known that MM patients are at a heightened risk for developing MDS/AML, possibly due to treatment-related effects of the chemotherapy (such as the melphalin I had for my ASCT).

In August, Paul informed me that he had ordered a blood test genetic profile for me, which revealed that I have some genetic mutations that predispose me to develop MDS.  While my numbers show that I don't (yet) have MDS, he put me on Vitamin B1 and folic acid as a precaution.  He also referred me for a consult with Dr. David Steensma at the Farber, who specializes in MDS.

I started to do some research (surprise) and was a bit nonplussed to discover from the gene profiling pathology report that one of the genetic mutations I have is ASXL1.  For patients with MDS, the ASXL1 oncogene is associated with high-risk aggressive disease with poor clinical outcomes.  Gulp!  I also learned that one of the first signs of MDS is often anemia.  Could my iron deficiency have something to do with this?

So I was understandably a bit nervous when I met with Dr Steensma today.  He was great!  He immediately put me at ease and allayed some of my concerns.  For one thing, he assured me that my recent history of iron deficiency is completely unrelated to MDS.  MDS-related anemia is an entirely different mechanism.  That's good!  Also, since my CBC blood test results are almost completely normal, there is no sign of impending MDS.  He likened my condition to MGUS, a precursor asymptomatic condition to MM, which has a small (about 1%) annual chance of progressing to full MM.  In my case, since I have two oncogenes identified (the second one is SH2B3, another MDS predisposition gene), I may have a somewhat greater chance of progressing to MDS, but he thinks it is still pretty small.

I told him that with my bad genetics, if I do contract MDS, I'm fucked.  Is there anything available to forestall getting MDS with my predisposition oncogenes?  He said there is some recent research being done on this, and that there will soon be a clinical trial to see if administering some chemo to at-risk patients who have been pretreated for another blood disease could prevent the onset of MDS.  I intend to follow up on this research.

This was a great relief!  All I have to do is continue to monitor my blood counts.  If I become anemic again due to iron deficiency, it's not MDS.  If it's not due to iron deficiency, then I need to explore further.  In the meantime, I plan to look both ways before stepping off the curb!

I've scheduled a colonoscopy/endoscopy for next month to see if there might be a reason I'm losing iron.  I sure hope it's not colon cancer!

As for the other patient in our household, Gretchen is slowly recovering from her recent esophagectomy.  It has not been an easy recovery.  She has had to go back to Dr. Kent twice to have her esophagus dilated.  While this definitely improved things, she is still having trouble eating solid foods, so she may have to go back again for another dilation.  She also has a lot of nausea and is really tired, but she was told that this is all pretty normal.  We just hope that she gets through this phase sooner rather than later.


10 comments:

  1. I will, of course, to continue to be your supporter through your journey. I also continue to support Gretchen.

    ReplyDelete
  2. Whew, I was much happier when I got to the end of your blog than when I started reading it! Should have put the 'good news' first so readers could keep breathing!
    Good wishes to both you and Gretchen in your journeys through this looking glass they call cancer!

    ReplyDelete
  3. I'm sorry I started out making it sound worse than it turned out to be. I guess that wasn't fair to my readers. I'll try not to do that again.

    ReplyDelete
  4. Hi Bill - This is a life of MM patient. As Gilda Radner used to say on SNA "There is always something. If its not one thing, its another." Since we last communicated I had a stem cell transplant (which didn't work), DPACE and DCEP. I am taking one day at the time. Fortunately there are new drugs coming out all the time. I am on Daratumumab,Pomalidomide, Carfilzomib these days. I am what they call a "high risk." I think I will start glowing one of these days with all this chemo. Hang in there and stay positive.
    Best,
    Mike from NY

    ReplyDelete
    Replies
    1. Hi Mike. I'm sorry you have not been doing so well. It sounds like you have been through the ringer. Hopefully, your new drug regimen will work for you. Please keep me informed as to how you are doing. You are in my thoughts. Hang in there, Mike!

      Delete
  5. Very interesting. Ive never heard of it. I'm glad your doctor was so proactive though. Hopefully all will be well.

    ReplyDelete
    Replies
    1. Thanks, Christina. I'm keeping my fingers and toes crossed!

      Delete
  6. ALL THANKS TO DR WILLIAMS WITH HIS HERB MY WIFE WAS COMPLETELY CURED FROM MYELOMA
    Is my pleasure to comment on this site and i thank the admin of this site for his/her great work so far.one of the happiest moment in my life was when the doctor confirm that my wife is been free from this illness. this awesome moments makes me the happiest man on earth, I really don't know how to thank DR WILLIAMS for helping my wife get cured for over how many year of suffering from myeloma. i came across DR Williams contact through a headline news on internet about how DR Williams help a woman to get cured of her myeloma and so many other with similar body problem ,i contacted him and he told me how to get his herb,few day later he sent me the herbal portion which my wife take every morning for 28 days, and his medicine was able to cure her completely from myeloma. and now she very mush okay without any side effects whatsoever, If you have myeloma , you can contact him on his email address drwilliams098675@gmail.com for advice and for his product.

    ReplyDelete
  7. Hiv disease for the last 3 years and had pain hard to eat and cough are nightmares,especially the first year At this stage, the immune system is severely weakened, and the risk of contracting opportunistic infections is much greater. However, not everyone with HIV will go on to develop AIDS. The earlier you receive treatment, the better your outcome will be.I started taking ARV to avoid early death but I had faith in God that i would be healed someday.As a Hiv patent we are advise to be taking antiretroviral treatments to reduce our chance of transmitting the virus to others , few weeks ago i came on search on the internet if i could get any information on Hiv treatment with herbal medicine, on my search i saw a testimony of someone who has been healed from Hiv her name was Achima Abelard and other Herpes Virus patent Tasha Moore also giving testimony about this same man,Called Dr Itua Herbal Center.I was moved by the testimony and i contacted him by his Email.drituaherbalcenter@gmail.com We chatted and he send me a bottle of herbal medicine I drank it as he instructed me to.After drinking it he ask me to go for a test that how i ended my suffering life of Hiv patent,I'm cured and free of Arv Pills.I'm forever grateful to him Drituaherbalcenter.Here his contact Number +2348149277967...He assure me he can cure the following disease..Hiv,Cancer,Herpes Virus,Lyme Disease,Epilepsy, ,Bladder Cancer,Colorectal Cancer,Breast Cancer,Kidney Cancer,Leukemia,Lung Cancer,Non Hodgkin Lymphoma,Skin Cancer,Uterine Cancer,Prostate Cancer, fibromyalgia ,ALS,Hepatitis,Copd,Parkinson disease.Genetic disease,Fibrodysplasia disease,Fibrodysplasia Ossificans Progressiva,Fluoroquinolone Toxicity Syndrome,Inflammatory bowel disease ,Huntington's disease ,Diabetes,Fibroid...

    ReplyDelete