My name’s Mark – I’m 50 years old and was diagnosed 7 years ago, but today is my first post on the Myeloma Beacon (so please be gentle).
My questions are to do with integrative therapy – something we don’t really have in the UK, where the mainstream doctors seem to frown on anything other than conventional drug treatments.
My History:
June 2009 – Age 43 – Diagnosed with plasmacytoma, following collapse of C7 vertebra. Received surgery (anterior plate & cage at C7), plus 28 cycles of radiotherapy. Prior to this I was a fit and healthy, non-smoker, occasional drinker with an active outdoor lifestyle.
January 2011 – Progressed to light chain myeloma – serum free light chain test showed lambda levels at 800 but no obvious symptoms of bone damage. Received five cycles of induction cyclophosphamide, thalidomide, dexamethasone (CTD), followed in October 2011 by an autologous stem cell transplant with melphalan. Achieved a stringent complete response (lambda at 14) and enjoyed 2 good years of disease free remission (happy days).
January to September 2014 – Gradually increasing bone pain and evidence of lytic lesions – lambda levels slowly increased to 165 at which point suffered fractures to left clavicle and 1st rib. Received pain management and localised radiotherapy, plus six cycles of Velcade, cyclophosphamide, and dexamethasone. Lambda levels dropped to 10 but began to rise again following cessation of treatment in March 2016, and were at 28 just prior to a second autologous stem cell transplant with melphalan in July 2015, following which my lambda level was 25.
Three months after my last transplant, I began taking Longvida curcumin at a dose of 4 g per night (equivalent to 800 mg of pure curcumin) and have been taking that up until now. Obviously I don’t have any idea whether curcumin has helped keep my cancer down (in comparison to what it might have been), but I’ve had less inflammation, less pain generally, and better sleep since I’ve been on it.
Unfortunately, after the transplant I continued to get occasional pains from my ribs, sternum and mid spine, and although my light chain levels didn’t increase for several months, they began to creep slowly upwards again from January this year (1 – 3 points a month) and then took two big steps of (10 points a month) up to a lambda level of 70 last month, when a PET CT showed fresh activity in my ribs, sternum and C7 vertebrae.
The fact that I was aware of bone pain and the serum free light chain results starting to creep back up, such a short time after the stem cell transplant worries me and makes me wonder whether the VCD treatment failed to put down the disease or even whether there might have been some myeloma stem cells in with those that were returned to me during the stem cell transplant – I guess I’ll never know. All that’s important is where to go from here…
My consultant haematologist believes my disease has become oligosecretory and has me booked to start treatment next Wednesday using Ninlaro (ixazomib) with dexamethasone and Revlimid (lenalidomide) for 6 cycles, with Revlimid maintenance to follow.
Other than the cancer (lesions), I’m in good health at the moment. For reference, my last serum free light chain results were
lambda 69.1
kappa 14.4
kappa-lambda ratio 0.208
and
IgG 7.5 g/L
IgA 1.27 g/L
IgM 0.2 g/L.
My other bloods are all in normal range (except lymphocytes at 0.9 - they never fully recovered post transplant), calcium is normal, and my kidney function seems OK.
My problem is what to do now: Integrative therapy isn’t really practised in the UK and whilst I know there are studies that suggest curcumin can potentiate myeloma cells to the damaging effects of proteasome Inhibitors (like Velcade) and possibly prevent the disease becoming refractory, there also seems some suggestion that taking curcumin whilst receiving treatment isn’t a good idea. Even if I do continue to take it, I’d probably reduce the dose to 2 g per night (equivalent to 400 mg pure curcumin) and only on the days I wasn’t taking Ninlaro.
Basically I’m looking to maximise the effects of this round of treatment on the active myeloma, damage the myeloma stem cells any way I can and try and keep myself in good shape, hoping to stay well until the targeted drugs like Darzalex (daratumumab) become available here.
Can anyone tell me:
- How long does Ninlaro remain active in the system – is it similar to Velcade (48 hours)?
- Would it be advisable to avoid taking curcumin the day before and day after I receive Ninlaro or on the day of taking Ninlaro and the day after that?
- Is it likely that taking curcumin at the reduced dose (stated above) will have a negative impact on the action of the dexamethasone or Revlimid?
Regards, Mark
) but so far, no problems.