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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

one year post stem cell, severe hotflashes!

by sunny on Tue Aug 09, 2011 11:36 am

I am a young myeloma patient, 32 when diagnosed, and then did my transplant last june6 months after diagnosis . I had a "very good response" and since last september my Myeloma protein has been "too low to meausre" the test just shows "quantit". I am doing well, back to work, feeling good. Most of my blood work is back in the low/normal range (hemoglobin, white count etc.) I am still trying to loose weight I gained my recovery year but having a hard time with the last 10 pounds to reach the weight I was before treatment.

After my transplant I started having really frequent hot flashes. Includes flushing, and my face and head and neck sweat a lot!. My family doc meausred my hormone last October and said they were out of whack, but did not show menopause, but did show borderline hyperthyroid, after retesting it was fine. My cycle returned in the winter for a few months, but since April I have not had a menstrual cycle, and for the last few months I am again having frequent hotflashes.

Myeloma doctor has not commented on this, I will bring it up at my appointment in 6 weeks. and my family doctor is not sure since she says my hormones are a bit all over the place after transplant and she figures they are trying to "level out".

Befoe diagnosis I had horrible drenching night sweats for about 6 months.

I know that there are not many myeloma pateints my age so there isn't a base line to compare myself too! Being young I also bounced back from my transplant pretty well. But I do have spinal involvedment (lytic lesion) and take monthly pamidronte, but no maintenence.

sunny

Re: one year post stem cell, severe hotflashes!

by Joanne V on Tue Aug 09, 2011 12:11 pm

I had my stemcell transplant in 08. I to have suffered the hot flashes and had not had a menstrual cycle in almost 3 years till recently. My doctors put me on hormone replacement for menopause. The night sweats and hotflashes deminished. Just recently for the past 3 months I have started my menstrual cycle again like clock work. The hotflashes have stopped. I took myself off the hormone meds and have not had any hotflashes. My doc says that my body is coming back to its normal self again. Idont know :/. I have been on Revlimid /dexo for almost a year so who knows. Well I hope everything turns out good for you and they can help you to feel better. God Bless.

Joanne V

Re: one year post stem cell, severe hotflashes!

by Doctane on Tue Aug 09, 2011 5:34 pm

Adding pomalidomid to Decadron should get you a nice but temporary response. Consider adding weekly Velcade or subQ which will greatly reduce your side affect. Go back on Revlimid with this routine. Get your doctor to add valproic acid which is FDA and is also a histone deacytalor. You should be in Tumeric as well 3-10 gms a day. consider adding celebrex as well. Vitamin D 5000 iu.

Here are some recommended combinations based on your story.

CyBorD + Revlimid + vaporoic acid + Tumeric + celebrex
If you can substitute Pomalidomed for Revlimid even better. You could get it as co
Compassionate use but it just went on phase 3 studies and may be more difficult to get.

DT - PACE is another option but I find it dies not work as well after being in the I
Immunomodumariea you have been.

In either case, After your response plateaus you should strongly consider an autologous- mini Allogeneic (non myeloablative) transplant.

Doctane

Doctane


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