Wednesday, March 1, 2017

Latest lab results...all good. Plus an interesting side effect of Zometa.

Hello, friends! I hope that this blog continues to be of interest to some, even though updates are less frequent. Live chugs along, with family, work, good wine, bad golf and music. And in the background noise there is my diagnosis, not yet completely excised from my life but relegated to a minor role at this point as I continue to wait out the 10-year "all clear" whistle that will arrive in September, 2019.

On that note, most recent labs are negative for myeloma and everything looks good. For those into super detail, my IgM (one of the protein types that gets clobbered with transplants) remains low and may never recover, but IgG (where my bad protein resided) and IgA are normal and my immune system appears to be working fine.

I have spent the last couple of months in a state somewhere between inconvenience and agony from what turns out to be a pinched nerve. It came out of nowhere in December before a family trip and it effectively sidelined me from what was to be a full week of activities in Hawaii. It was actually pretty painful, requiring serious painkillers to get even 3-4 hours of sleep. Tests indicated it was a nerve with the likely culprit being C5-C7 vertebrae, and sure enough the MRI showed two bulging discs pinching the nerve there. The only real solution is time and physical therapy, unless I was spinal surgery which I was advised against since it only moves the stress to other vertebrae, and limits range of motion.

Bear with me, as this has some useful information for those on bisphosphonates...

So I learned that nerves don't just sit there in your body -- they are directed through the body through "ports" in bones near the spine (presumably the shoulder area). When the body moves, the nerves need to be able to slide freely through these ports. I've got bilateral narrowing of these ports -- from the bisphosphonates. It's not a problem on my left side, but on the right side, it's an issue, and combined with inflammation from the irritated nerve, it's accentuating the issue with the pinched never. Something to consider.

There are all among the "high class" problems that I waved away at the time of my diagnosis, and I continue to be very thankful that I'm worrying about such trivialities.

For the moment, I'm on anti-inflammatories, plus Gabapentin for nerve strength (odd that I never took this during primary therapy, but I was fortunate and never experienced much neuropathy). This, plus the PT, will hopefully be enough to set things right.

I plan on returning to Mt. Sinai in late June or early July for my next follow-up with Dr. Barlogie, who is now licensed to practice in New York, which is terrific. I will likely have another set of labs to report on in the meantime. Otherwise, steady as she goes!

I continue to be thankful for the opportunity to counsel others with Myeloma; I still speak to anywhere from 5-10 patients a week. Please reach out to me if you need help!

20 comments:

  1. Glad you continue to resist progression of MM. I am on Zometa and receive quarterly infusions. I did not know it can lead to narrowing of nerve pathways. 13 months ago I had spontaneous nerve pain above my left ear. The pain was so severe, I went to the ER, worried I had a brain tumor. But, after scans etc., it turned out to be a pinched occipital nerve, which exits from the spinal column at C3/C4. Rest and anti-inflammatories resolved the pain. However, there is still some numbness. It seemed a mystery until now. Given my history with bisphosphantes, I suspect you are correct in pointing the finger at the Zometa.

    ReplyDelete
  2. fyi gabapentin is a pain reliever it doesnt 'strengthen' nerves

    ReplyDelete
  3. i like this blog.
    thanks for sharing ..
    goldenslot

    ReplyDelete
  4. Hey Nick! I was reading an investment article about Bluebird Bio (and their supposedly very promising bb2121 treatment for multiple myeloma), and figured I'd swing by and see how you're doing.

    Anyway, I'm very glad to hear everything is still going well overall, still in full remission, and hope to see you at PPUSA in September.

    Take care,

    Craig

    ReplyDelete
  5. This comment has been removed by the author.

    ReplyDelete
  6. Hi Nick, I don't know if you've tried alpha lipoic acid. It might help a bit if you haven't. It has helped me with knee nerve issues when I had a knee replacement. Glad to read you are still in remission. My tenth year will be in 2020. My Dad on the other hand has just passed the 25th year marker. Definitely something to strive for!

    ReplyDelete
  7. 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
  8. 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
  9. 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
  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. I have long felt a special connection with herbal medicine. First, it's natural, Charlie attended the same small college in Southern California - Claremont Men's College - although he dropped out of school to enroll in the Julliard School of Performing Arts in New York. York. Had he been to Claremont, he would have been senior the year I started there; I often thought that was the reason he was gone when he discovered that I had herpes. So, my life was lonely, all day, I could not stand the pain of the outbreak, and then Tasha introduced me to Dr. Itua who uses her herbal medicines to cure her two weeks of consumption. I place an order for him and he hands it to my post office, then I pick it up and use it for two weeks. All my wound is completely healed no more epidemic. I tell you honestly that this man is a great man, I trust him Herbal medicine so much that I share this to show my gratitude and also to let sick people know that there is hope with Dr. Itua. Herbal Phytotherapy.Dr Itua Contact Email.drituaherbalcenter@gmail.com/ info@drituaherbalcenter.com. Whatsapp ... 2348149277967
    He cures.
    Herpes,
    Breast Cancer
    Brain Cancer
    CEREBRAL VASCULAR ACCIDENT.
    Hepatitis,Glaucoma., Cataracts,Macular degeneration,Cardiovascular disease,Lung disease.Enlarged prostate,Osteoporosis.Alzheimer's disease,
    Dementia.Tach Disease,Shingles,
    Lung Cancer
    H.P.V TYPE 1 TYPE 2 TYPE 3 AND TYPE 4. TYPE 5.
    HIV,Arthritis,Amyotrophic Lateral Scoliosis,Fibromyalgia,Fluoroquinolone Toxicity
    Cervical Cancer
    Colo-rectal Cancer
    Blood Cancer
    SYPHILIS.
    Diabetes
    Liver / Inflammatory kidney
    Epilepsy

    ReplyDelete
  12. مظلات وسواتر الرياض
    متخصصون فى تركيب أعمال المظلات والسواتر بجميع أنجاء المملكة مع مراعاة جودة الصناعة والتركيبات وتوفير ‏ضمان 10 سنوات على جودة العمل

    ReplyDelete
  13. 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
  14. Thank you for the wonderful suggestions, this is really a very good blog and these tips are very useful for cancer patients
    pomalid 1mg,pomalid 1mg capsules
    pomalid 2mg,pomalid 2mg capsules
    pomalid 4mg,pomalid 4mg capsules

    ReplyDelete
  15. 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
  16. Herpes is a sexually transmitted virus that primarily infects the mouth and the genitals. It is transmitted by bodily fluids – penetration isn’t required for transmission, oral-oral or oral-genital contact will suffice.I WAS ONCE HERPES SIMPLEX VIRUS patient, I have HSV-I genitally and I'm one of the rare cases where I was infected by sexual contact. The person who infected me was unaware that he had it, and he tested negative on a blood test (he probably got it from his mother at birth and never had an outbreak in his life).I'm sure I have HSV-I (they did a culture of the fluid from the sores i had during my initial outbreak). So it is possible to contract HSV-I by asymptomatic asexual contact, so please people talk about this and prevent anyone else from getting it, I'm kind of going through something. Four years ago my love and I both had an OB and when I got the blood work done it came back negative. We were happy in the relationship so I learned to accept it and never really bothered to get tested again. Now, that we broke up I decided to get tested again. I came back negative for both HSV-1 and HSV-2 (got the news!) and have not had an OB since the initial one four years ago. My X on the other hand has had a few small outbreaks and never came back positive for HSV-1.Only the help of Dr Afrid where able to help me out with is Root and Herbs, if you are having any type of this disease or infection like HIV,CANCER OR ANY disease kindly email doctor Afrid for cure:( drafridherbalhome@gmail.com ) or Whatsapp him on +2349057260738.

    ReplyDelete