This week’s poll is about what your initial myeloma therapy was upon your diagnosis.
A few clarifications:
First, please answer this poll only if you have been diagnosed with multiple myeloma within the last two years.
Second, initial therapy is frequently called induction therapy. It does not matter for this question whether you proceeded to have a stem cell transplant after the initial therapy.
Third, if you are a caregiver or family member of a myeloma patient, feel free to answer on their behalf.
Fourth, if you received a therapy that is not included in the list above, please use the space below to describe it.
As always, feel free to post comments, thoughts, or feedback in the space below. They can be very useful to other readers.
For those of you who are interested, we ran this same poll last year:
https://myelomabeacon.org/forum/weekly-poll-initial-myeloma-therapy-t978.html
Forums
Re: Weekly Poll - Initial Myeloma Therapy - 2013
Treated for the angry myeloma, plasma cell leukemia. After 3 rounds of VDT-PACE and 1 round of CyBorD I had a complete response followed by a SCT and now on Revlimid as maintenance therapy. So far, all is well!
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WeatherNurse13 - Name: Gracie
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 10/2012
- Age at diagnosis: 49
Re: Weekly Poll - Initial Myeloma Therapy - 2013
My diagnosis for multiple myeloma was 11/12 and was on a VCD chemotherapy.. This went as expected for 5 months without any serious side affect.. Transplant followed in 5/13 .. On a remission presently waiting to see what followup maintenance may be required.
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Andreainaz - Name: Andreainaz
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: November 2012
- Age at diagnosis: 66
Re: Weekly Poll - Initial Myeloma Therapy - 2013
Did RVD for six months, then harvested my stem cells for a stem cell transplant in case it's needed later on. The RVD regimen plus the high dose chemotherapy for the harvest all but eliminated the Myeloma cells.
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John Fabian
Re: Weekly Poll - Initial Myeloma Therapy - 2013
I have decided to go on an Holistic approach for my multiple myeloma Therapy to fight Cancer Cells ....(Diagnosed 3/2013) after Mugus (over 5 years ago), SM (about 1 1/2 years ago)
Anti-Inflamatory Diet...
Exercise...
Mindfulness....
Nutricional Supplements
Anti-Inflamatory Diet...
Exercise...
Mindfulness....
Nutricional Supplements
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Hank
Re: Weekly Poll - Initial Myeloma Therapy - 2013
Hank, Iam very interested to know more about your diet and how sucessfull it is for you. .Would you post your CBC numbers ,I.e. red white Hg and Hst for us?
My hope after I finish rvd for a few months is to use a similar holistic approach for maintenance without a ASCT. What are your thoughts on this? Iam very keen on Curcumin, broccoli, apples and daily fruit smoothies. I have to believe that the Holistic approach can be effective for low risk cases and that all the drugs impairs the Imune system from doing its work.
aul 
My hope after I finish rvd for a few months is to use a similar holistic approach for maintenance without a ASCT. What are your thoughts on this? Iam very keen on Curcumin, broccoli, apples and daily fruit smoothies. I have to believe that the Holistic approach can be effective for low risk cases and that all the drugs impairs the Imune system from doing its work.
aul -
Pjorg45 - Name: Paul Jorgensen
- When were you/they diagnosed?: May 1013
- Age at diagnosis: 68
Re: Weekly Poll - Initial Myeloma Therapy - 2013
I have a particularly aggressive form of myeloma with the highest initial plasmocyte count the hospital I'm treated in has ever seen. I feel like I need all the help I can get so have been following a combination of classical medicine with a holistic approach - both have proved effective - the VRD spectacularly so but the side effects were so debilitating - crippling fatigue, depression and the rollercoaster of Dexamethasone - that I got to the point where I really felt I'd rather die than live like that. To my surprise and despite a level of scepticism I tried homeopathy as a last resort and that turned everything around until my quality of life has become pretty good.
I also use quite a few supplements: L-glutamine for the mouth ulcers, acetyl-l-carnitine and alpha lipoic acid (both in v small doses) folic acid, vitamins B1 & B6 for the peripheral neuropathy - these have really helped. Vitamin C, green tea, ginseng, gingko biloba for general tonicity (hard to know how much they help but they have been clinically proved to help many conditions). Propolis, grapefruit seed extract, Echinacea and more Vit C as immune boosters (not sure how much they helped but I was able to discontinue the Amoxycillin and Bactrim pretty quickly). Turmeric, broccoli and saw palmetto as specific myeloma support. Milk thistle - to help decongest my liver, a herbal suppliers combination to support my kidneys. Also a good to eat diet with plenty of organic food, smoothies, good yoghurt, organic chocolate etc
The classical meds I have been taking are: initially Velcade and Prednisone, then VRD ASCT, supported by Bactrim, Heparin, Amoxycillin with Morphine for the pain - which initially was intense, proton pump inhibitors for vomiting and acid reflux. I finished my maintenance treatment, low-dose Revlimid only, some months ago and since then have been taking the holistic stuff only.
I have been told by my specialist that I didn't really benefit from the ASCT and that there is evidence to suggest that it is no more effective that VRD on its own - I wish I'd been told that before the ASCT - a truly horrible experience - definitely worth doing if it helps of course but I wouldn't do it again. I would advise anyone who has this proposed as a treatment option to go into the extent to which it is likely to help.
I wouldn't be alive without VRD but I would have discontinued treatment (and probably died) without the holistic approach so I owe my life to classical medicine and holistic support.
Pjorg: My numbers (European units) - Hg 15.1 g/l RBC 4.75 T/L Hematocrit 45.2% WBC 3.59 g/l
I also use quite a few supplements: L-glutamine for the mouth ulcers, acetyl-l-carnitine and alpha lipoic acid (both in v small doses) folic acid, vitamins B1 & B6 for the peripheral neuropathy - these have really helped. Vitamin C, green tea, ginseng, gingko biloba for general tonicity (hard to know how much they help but they have been clinically proved to help many conditions). Propolis, grapefruit seed extract, Echinacea and more Vit C as immune boosters (not sure how much they helped but I was able to discontinue the Amoxycillin and Bactrim pretty quickly). Turmeric, broccoli and saw palmetto as specific myeloma support. Milk thistle - to help decongest my liver, a herbal suppliers combination to support my kidneys. Also a good to eat diet with plenty of organic food, smoothies, good yoghurt, organic chocolate etc
The classical meds I have been taking are: initially Velcade and Prednisone, then VRD ASCT, supported by Bactrim, Heparin, Amoxycillin with Morphine for the pain - which initially was intense, proton pump inhibitors for vomiting and acid reflux. I finished my maintenance treatment, low-dose Revlimid only, some months ago and since then have been taking the holistic stuff only.
I have been told by my specialist that I didn't really benefit from the ASCT and that there is evidence to suggest that it is no more effective that VRD on its own - I wish I'd been told that before the ASCT - a truly horrible experience - definitely worth doing if it helps of course but I wouldn't do it again. I would advise anyone who has this proposed as a treatment option to go into the extent to which it is likely to help.
I wouldn't be alive without VRD but I would have discontinued treatment (and probably died) without the holistic approach so I owe my life to classical medicine and holistic support.
Pjorg: My numbers (European units) - Hg 15.1 g/l RBC 4.75 T/L Hematocrit 45.2% WBC 3.59 g/l
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Mijji - When were you/they diagnosed?: 2011
Re: Weekly Poll - Initial Myeloma Therapy - 2013
I did 8 cycles of carfilzomib (Kyprolis)/Revlimid/Dex at the NIH in Dr. Landgren's clinical trial for newly diagnosed myeloma. I am now on the maintenance part of the trial using low dose Revlimid. So far, knock on wood, I feel great and, well, normal again. Be great if it would last.....Big hug to you all! Terry L.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Weekly Poll - Initial Myeloma Therapy - 2013
Terry L.
That is wonderful news. Have you had any side effects from the treatments? Any abnormal labs? How do they go about treating someone with hypocellular marrow & acquired bleeding issues? Does treatments affect clotting properties? I wish you continued good health and hope for complete remission.
That is wonderful news. Have you had any side effects from the treatments? Any abnormal labs? How do they go about treating someone with hypocellular marrow & acquired bleeding issues? Does treatments affect clotting properties? I wish you continued good health and hope for complete remission.
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