Chemotherapy cycle #4 started on Tuesday this week and just as night follows day, as I began my first 4 day course of steroids and my bi-weekly Velcade injections. After a fortnight of general fatigue, I'm up again at 4am and ready for the world. I almost wish I could be taking the steroids full time if only for the energy they provide me with. This may be the last course of the standard VTD treatment I receive (for now) - as previously mentioned blood test results have been positive and, in our lead consultant's own words, I have been tolerating the treatment remarkably well. The team at the Freeman are booking my next PET scan as well as looking into booking my stem cell transplant which is looking like it could be in October. More should be revealed at our next Myeloma clinic review in a couple of weeks but as the clock ticks we have been continuing to work hard to secure a way forward for how we go about obtaining the Revlimid drug when the time comes to take it (100 days after the transplant is completed).
Over the past month we've also been working to understand more about the precise nature of my condition. We received some surprising news in June - despite receiving the verdict from the MUK 9 trials team who classed my test result as standard risk, we've since learned my diagnosis is actually classed as high risk due to specific genetic abnormalities being present in my bone marrow - abnormalities it seems the MUK 9 team weren't looking for. Whilst this doesn't change anything in terms of the standard of care treatment I'm receiving, it radically changes my prognosis for the worse so naturally we're keen to understand more detail. The news downgrades my overall survival time from 5 years to 3 years. As for obtaining Revlimid maintenance, well given it's not available on the NHS as a first line maintenance where one is eligible for a stem cell transplant (me), we remain left with Hobson's choice: we must have the drug prescribed, pay the going rate and ensure we maintain appropriate care & monitoring along the way. This is a seriously controlled drug and I can't take the risk of not having the right care, monitoring and safety net if I react adversely. Our consultant put us in touch with an NHS haematologist at the Rutherford Cancer Centre in Bedlington to discuss how they might be able to help, and in June we had a very productive conversation which opened up a tangible option for having the drug prescribed, whilst sharing care and ongoing monitoring with the team at the Freeman hospital. At home, my wife is the real hero in all of this. She's taking care of all the phone calls, the battle for information, and the relentless fundraising arrangements (more details on the Fundraising tab above). This leaves me to try and stay de-stressed (I try), work from home, and be a dad and a husband. It's not always easy with the cloud of myeloma hanging over us but we do our best and the love and support of my girls, our family, friends, neighbours and colleagues, and total strangers for that matter has been key. As for how and when we proceed, I guess we'll find out in a couple of weeks. Stay tuned.
3 Comments
Joanne
1/8/2019 10:13:45
Dear David, I am a fellow myeloma patient ( ppcl myeloma) and am currently taking Revlimlid as a third line treatment. I’m too high risk for a transplant so this is my main treatment. I hope your fund raising is a success and you can start the treatment after your transplant. I am a year on from diagnosis, so hang on in there and remain hopeful.
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fm loh
1/8/2019 13:51:22
see cancertutor.com, tbyil.com, cancerfightingstrategies.com (safe, effective alternate treatment info) and curezone.org (search cancer forum) === vegans' blood has 8X cancer stopping power === ketogenic diet - Cancer cells can't use ketones, but use glucose and glutamine for metabolism. Avoid potassium, carbohydrates, iron and sugar (they feed cancer) === Prevent Cachexia - N-Acetyl Cysteine, extra virgin coconut oil, raw organic goat milk, medical marijuana, Garden of Life's Primal Defense Homeostatic Soil Organisms.
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tom hennessy
2/8/2019 11:27:58
Elevated iron in myeloma forcasts death. "elevated serum ferritin was an independent predictor of mortality "
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About meI'm David Jameson, I live in Whitley Bay with my beautiful wife Janine, our two children and our two dogs. I love music, and Newcastle United. And I have multiple myeloma. Archives
June 2020
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