Thursday, January 15, 2015

Update from Little Rock

A mostly good-to-very-good checkup.

Highlights:

* It is FREEZING in Little Rock in January.  I never remember that and always pack as though it's going to be in the 60s.  Well it was 19 degrees last week and got as low as 30 last night.  Chilly!

* I remain in stringent complete remission.  No M protein, all markers normal except for IgM which remains low and is recovering post-transplant.  More on this below.   Most importantly, bone marrow is negative for any minimal residual disease -- the most sensitive test, of course.  I believe (though I'll need to check) that makes four random marrow sites over the past 18 months that have tested MRD negative.  A good sign, to be sure.

* The pits in my spine have not resolved -- they are unchanged from my previous scan, and number five, all sub 1cm and in the thoracic vertebrae.  I am going back on Zometa every other month to see if we can spur resolution.  Should that fail, I can likely look forward to fine needle aspirations of as many of them as can be reached with the needle (this was an issue before -- they have to go deep, evidently), and those aspirates subjected to MRD assessment.  We shall see.

* Insurance has, for the first time, been a real issue.  They rejected all scans.  I paid out of pocket for the MRI of the T-spine (ouch, to the tune of $1500).  I would have liked to see a PET and other MRIs but for now, no dice.

* I have experienced an uptick in Lambda free light chains -- they are still well within normal ranges but have increased steadily over the past year.  BB confirmed that this is likely just a sign of my immune system recovering.  Still, as FLCs increase before M protein does, it was one of those "this is probably nothing...BUT..." moments.  All that said, negative MRD trumps everything.

* I asked BB a number of questions.  Among them:  (1) Confirm that I did have cytogenetic abnormalities so that I can read the data to parse for my biology (yes, I did); (2) has my gene array returned to what looks like a patient without any MM whatsoever (work in progress); (3) is there a plateau among TT4 lite (too early to say but numbers do not appear to be plummeting, which I was worried about initially -- and in fact among those with my "subtype" (proliferation) there does appear to be a plateau; (4) should I get any other tests, like a heavy lite assay, to assess my condition or the depth of my remission (no); (5) are the rising LLCs cause for concern (likely just recovering immune system); (6) what should we make of the persistent former lesions in my spine ("why are those f*ckers still here?" he said as he looked at the MRI results...put me back on Zometa every other month, probably fins needle aspiration of remaining lesions in September to test specific marrow from those sites for MRD; (7) what is the plan for recurrence? ("I do not plan on recurrence."  me: "That's great, Bart, but I want to plan for recurrence."  BB:  "We would need to assess your biology at that time and look at whole genome sequencing and other analysis to inform our strategy at that time."

The upshot: steady as she goes, watchful and hopeful waiting, let's see if the Zometa makes those lesions disappear.

13 comments:

  1. Great news! Nice meeting you. Waiting for Dr B right now.

    ReplyDelete
  2. Sound like good news Nick (except the insurance part). I laughed out loud at the recurrence conversation. Gotta love BB! I'm about to call to reschedule my first post-maintenance check-up. Also being Lite arm with unresolved lesions I'm getting anxious about it.

    ReplyDelete
  3. Sounds like you're on track....congrats on the great workup! Rock on!

    ReplyDelete
  4. Good news Nick. Happy New Year.!
    Mary Lou Z

    ReplyDelete
  5. Wow, real bummer to hear about the insurance, but other wise glad to here about the remission

    Kristin @ wifemd.com

    ReplyDelete
  6. Nick! So happy to read how well you're doing. I check in on you often. ;) Hope all else is wonderful in your world.

    ReplyDelete
  7. Great seeing you at MIRT the other day, Nick, wish we had more time to chat. All in all, we are two blessed amigos to be six years down the winding MM highway. Let's go for a bunch more!

    ReplyDelete
  8. Nick, a couple of blips, but a good report. Steady as she goes. Hope to see you soon, Matt

    ReplyDelete
  9. 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
  10. ALL THANKS TO DR WILLIAMS
    I was diagnosed of myeloma in 2011, I have tried all possible means to get cure but all my effort proved abortive, until a friend of mine introduced me to a herbal doctor , who prepare herbal medicine to cure different kind of diseases including myeloma , when i contacted this herbal doctor via his email, he sent me the myeloma herbal medicine via courier service, when i received the herbal medicine he gave me step by step instructions on how to apply it, when i applied it as instructed by Dr Williams i was totally cured from this disease within 1 months of usage. any body with similar problem can Contact this great herbal doctor via his email drwilliams098675@gmail.com for advice and for his product,and thanks to you admin for such an informative blog.

    ReplyDelete
  11. As a sign of gratitude for how my wife was saved from myeloma, i decided to reach out to those still suffering from this.
    My wife suffered myeloma in the year 2016 and it was really tough and heartbreaking for me because she was my all and the symptoms were terrible, she always complain of bone pain, and she always have difficulty falling asleep . we tried various therapies prescribed by our neurologist but none could cure her. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and they left the contact of this doctor who had the cure to myeloma . I never imagined myeloma has a natural cure not until i contacted him and he assured me my wife will be fine. I got the herbal medication he recommended and my wife used it and in one months time she was fully okay even up till this moment she is so full of life. myeloma has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks admin for such an informative blog.

    ReplyDelete
  12. ALL THANKS TO DR WILLIAMS
    I was diagnosed of myeloma in 2011, I have tried all possible means to get cure but all my effort proved abortive, until a friend of mine introduced me to a herbal doctor , who prepare herbal medicine to cure different kind of diseases including myeloma , when i contacted this herbal doctor via his email, he sent me the myeloma herbal medicine via courier service, when i received the herbal medicine he gave me step by step instructions on how to apply it, when i applied it as instructed by Dr Williams i was totally cured from this disease within 1 months of usage. any body with similar problem can Contact this great herbal doctor via his email drwilliams098675@gmail.com for advice and for his product,and thanks to you admin for such an informative blog.

    ReplyDelete
  13. I'm 55-year-old from Korean, I was diagnosed with second-stage liver cancer following a scheduled examination to monitor liver cirrhosis. I had lost a lot of weight. A CT scan revealed three tumors; one in the center of my liver in damaged tissue and two in healthy portions of my liver. No chemotherapy or radiotherapy treatment was prescribed due to my age, the number of liver tumors. One month following my diagnosis I began taking 12 (350 point) Salvestrol supplements per day, commensurate with my body weight. This comprised six Salvestrol Shield (350 point) capsules and six Salvestrol Gold (350 point) capsules, spread through the day by taking two of each capsule after each main meal. This level of Salvestrol supplementation (4,000 points per day) was maintained for four months. In addition, I began a program of breathing exercises, chi exercises, meditation, stretching and stress avoidance. Due to the variety of conditions that I suffered from, I received ongoing medical examinations. Eleven months after commencing Salvestrol supplementation But all invalid so I keep searching for a herbal cure online that how I came across a testimony appreciating Dr Itua on how he cured her HIV/Herpes, I contacted him through email he listed above, Dr Itua sent me his herbal medicine for cancer to drink for two weeks to cure I paid him for the delivering then I received my herbal medicine and drank it for two weeks and I was cured until now I'm all clear of cancer, I will advise you to contact Dr Itua Herbal Center On Email...drituaherbalcenter@gmail.com. WhatsApps Number...+2348149277967. If you are suffering from Diseases listed below, Cancer, HIV/Aids, Herpes Virus,Bladder cancer,Brain cancer,Colon-Rectal Cancer,Breast Cancer,Prostate Cancer,
    ?Esophageal cancer,?Gallbladder cancer,Gestational trophoblastic disease,Head and neck cancer,?Hodgkin lymphoma
    ?Intestinal cancer,Kidney cancer,Leukemia,Liver cancer,Lung cancer,Melanoma,Mesothelioma,?Multiple myeloma,?Neuroendocrine tumors,Non-Hodgkin lymphoma,?Oral cancer,Ovarian cancer,?Sinus cancer,Skin cancer,Soft tissue sarcoma,Spinal cancer,Stomach cancer,Testicular cancer,Throat cancer,Thyroid Cancer,?Uterine cancer,Vaginal cancer,?Vulvar cancer,Hepatitis, Chronic Illness. Lupus,Fibromyalgia.

    ReplyDelete