[pb42Participant]

Diagnosed last December with a pp of 37, no symptoms. I was at the hospital in May and my paraprotein had dropped to 24. I have been told this is not normal if not having treatment. Is that true? I am taking lots of supplements, change of diet and ‘off label drugs’

[pb42Participant]

I haven’t had an answer to above but have more info re other blood results. Diagnosed Dec ’18 pp 37 (but since found out 39xmas eve pp 41, Jan 28th 34, may pp 24. My question is, does pp normally drop without treatment?

[cygnetParticipant]

Hi
Sorry for the slow reply – I have been away from the forum for a while.
My pp goes up and down – although not as dramatically as yours -it is enough to keep me happy under the 30 mark.I have been smouldering for four and a half years.

I take lots of supplements, exercise and work hard at staying as well as I can , mentally and physically.
I’m not sure what you mean by “off label” drugs??
My consultant told me pps can vary so they generally look at trends and supporting info.
I hope this helps!
C x

[pb42Participant]

Apologies, ‘off label’ just means meds taken not for their intended purpose. I use a private clinic, ‘Care Oncology Clinic’ (COC) and take atorvastatin, mebendazole, doxycycline and metformin which are know to target cancer stem cells. I believe you need to try and bock the metabolic pathways of myeloma, or any cancer, and I was diagnosed with myeloma two months after breast cancer so did lots of reading. Jane mcLellands, How to Starve Cancer’ is very informative especially about ‘off label’ (which are cheap drugs), supplements and the importance of diet.

[cygnetParticipant]

Aaah
Thanks for that clarification and recommendations.
I look forward to reading some more!
C x

[janebParticipant]

Hi Pb42
I’m very interested in the drop in your PP which I assume correlates to the medication you are taking? My husband also has erratic PP levels. They have jumped recently from 31.5 to 40 and yesterday were 37.6…..
Is the Care Oncology Clinic you refer to on Harley St? Can I ask which Consultant you see and the cost for the medication you’re taking?
We’d be very interested in arranging a consult to see if we can bring his PP levels back down and prolong treatment for as long as possible.
He was diagnosed in Dec 2015 by the way aged 44 with a PP of 23 which has gradually been rising.
Any information on the clinic/ meds you use would be greatly appreciated.
Thanks
Jane

[janebParticipant]

Thanks for the info. I think I’ll try to contact the clinic to see if they have any meds/trials specific to Myeloma assuming what you’ve been prescribed was to target the breast cancer and not the MM specifically.
We were pinning our hopes on the Daratumumab trial For SMM in The hope if delaying progression. There were trials at UCLH and Nottingham but looks like thy are no longer recruiting as the trial doesn’t appear on the gigs clinical trial finder which is really annoying as doesn’t seem to be any dysbdsrd treatment on offer at all like you, we want to be proactive and not just watch and wait!!
I’d love to hear if you find any other treatments for smoulderers.
Thanks again
Jane

[pb42Participant]

Hi Jane,

My paraprotein drop was short lived! Blood test in September showed 43 then in October (at request of consultant) was 63!!!! The coc protocol Is not enough and this is clearly mentioned by Jane mcLelland that wrote the book I mentioned earlier but thought I would stick with this/supps/diet and see how it goes. I have since added dipyradamarole (prescription from Clinic 158 in Glasgow) and a few other things. Statin/dipy combo is supposed to be good for myeloma. My consultant has since wrote to me to possible discuss treatment when I have my next appointment, next month. I don’t want too as only finished chemo for breast cancer in May and had a month of radiotherapy all of June. I am going to get my blood done again before I decide on proceeding with treatment.

[janebParticipant]

I was only thinking about you this last week!! I’m sorry to hear that your PPs have risen. My husband has his PP results and MRI results last week as his PP had risen to 41….thankfully down to 37.3 and no lesions found on MRI. We are still considering the treatment offered by COC but will wait to see what the New Yr brings.
Thank you fur posting. Your information in alternative treatment has been very interesting.

[kadesimiParticipant]

Speaking from my own experience I would say yes, it can go down as well as up because I’m on “Watch-and-wait” and receiving no treatment at the moment, but my last four (IgG) paraprotein readings at 3 monthly intervals have been 14, 16, 17, 17 and 15.

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