[Stan W.]

Re: Would you consider treatment for High Risk Smoldering mu

by Stan W. on Wed Mar 13, 2013 4:39 pm

Dana, I'm looking at % Abnormal Plasma Cells result.
The differing numbers in the biopsy always confused me. But, because my bones have not been effected and my protein numbers were creeping up, the main reason Dr. Jagannath wanted me to start treatment was the 90% plasma cell number in my BM.
He also didn't care for the treatment of SMM with drugs that you may need later and may become resistant to if used early on. I understand his concern and have come to trust his opinions very much.
The conversation was brought up when I mentioned the MLN9708 (oral Velcade) trial at the NIH I was invited to participate in. This was before starting treatment at Mt. Sinai in NYC.
You've got to go with what YOU think is the right move. And, put trust in your multiple myeloma specialist.
His goal for me is 4-5 months to a point where I can harvest and go on maintenance. I'm very happy with this goal.

[Dr. Peter Voorhees]

Re: Would you consider treatment for High Risk Smoldering mu

by Dr. Peter Voorhees on Thu Mar 14, 2013 8:19 am

Dear Dana,

Based on the results you have shared, I am not so sure that your smoldering myeloma is all that high risk. The normal MRI is highly reassuring and the burden of plasma cells on your marrow is quite low. I am surprised at the flow cytometry results of 97% -- your uninvolved immunoglobulins are not that low.

Dr. Landgren and his crew have recently published data suggesting that the PETHEMA classification system categorizes more patients as high risk than the Mayo model. I suspect there are patients who get miscategorized under the current systems. In other words, the optimal way to define high risk for progression to symptomatic myeloma remains a work in progress. My strong suspicion is that patients who meet criteria by both models are the highest risk, while those that meet criteria by one or the other model but not both are not as high risk.

I am not sure that I would recommend treatment with your disease characteristics. Participation in the NCI/Landgren natural history study would give you the opportunity to have a new set of eyes on your case to determine your risk level.

Hope this helps. Thanks and let us know what you decide to do!

Pete V.

[Stan W.]

Re: Would you consider treatment for High Risk Smoldering mu

by Stan W. on Thu Mar 14, 2013 9:22 am

Dr. Voorhees may be correct in his comment regarding the NIH's definition of high risk SMM patients. They considered me high risk but, my doctor, Dr. Jagannath disagreed with them. That was last summer.
In any case the decision to start treatment while my bones have not been damaged was a good one, in my opinion.

[DanaH]

Re: Would you consider treatment for High Risk Smoldering mu

by DanaH on Thu Mar 14, 2013 2:35 pm

Dear Dr. Voorhees,

Your response most certainly helps! I am so very grateful for your very thoughtful explanation and comments.

I understand your point about the PETHMA vs. Mayo studies and that the optimal way to define High Risk SMM continues to be a work in progress. I also agree with you about having another set of eyes and will look into the NIH natural progression study. Thanks again for taking your time to review all of the details I posted earlier.

Best,
Dana H.

[DanaH]

Re: Would you consider treatment for High Risk Smoldering mu

by DanaH on Thu Mar 14, 2013 2:36 pm

Dear Stan W.

Thanks so much for both of your responses. I appreciate it very much. The very best of luck to you with your treatment !'

Best,
Dana H.

[Jmd]

Re: Would you consider treatment for High Risk Smoldering mu

by Jmd on Thu Mar 14, 2013 3:05 pm

I also am participating in the NIH trial for high risk smoldering.myeloma. As stated earlier it is a combination of carbfilzimide, Revlimid, and dexamethasone. There are 8 cycles...three weeks going two days a week for the infusions of carbfilzimide and dex, one week of oral dex for two days, and the Revlimid is oral at home, 21 days on the 7 days off. I reached complete remission after cycle 4 and will be having a post-PET-CT scan and bone marrow biopsy and am hoping those results will be as positive. .I also will be having stem cells collected.
For me it was the right decision as I chose to treat before I became symptomatic. It was not an easy decision but once I made it I knew it was the right thing for me.
The doctors and nurses of the myeloma team are wonderful and the care is the best. They are always there for you and to answer your questions. The nurses at the day hospital for the infusions are also kind, caring, and excellent.
I am also fortunate that I live within driving distance of NIH which has made the treatment schedule easier. I've had side effects but none which made me question whether or not I should have participated in the study. The team of doctors and nurses help in every way possible to get you through the occasional rough patches, if you have any. I am feeling better cycle by cycle and am gradually getting more energy and stamina back.
Getting the "complete remission" news has made it all worthwhile as I finish up the remaining cycles.
I would certainly consider this clinical trial or treatment for high risk smoldering. But it is a very personal decision. This was right for me, and my family agreed.
The very best of luck...to all of us!

[DanaH]

Re: Would you consider treatment for High Risk Smoldering mu

by DanaH on Fri Mar 29, 2013 11:00 am

Hi jmd,

I am so sorry I did not respond to your comments, don't know how I missed it. Thanks so much for taking the time to detail your experience, I am so very grateful. It certainly sounds that your made a sound decision, one that has had fantastic results ! I am so very happy for you.

I do have a follow-up question to you or any of the others who are in this trial or similar tria at the NIH.

When you receive your IV treatment, is it required that you stay overnight? Or do you travel home and monitor any possible side effects and report to your team of multiple myeloma experts? I am in NYC - about 3.5 - 4 hour drive or Amtrak....would it be feasible to do this in "1" day? Or do they recommend remaining in the area overnight? If they require 2 days a week of infusion, how could I manage this?

Your thoughts are most welcomed. !

Best to you and all who have replied to my question.

Dana H.

[terryl1]

Re: Would you consider treatment for High Risk Smoldering mu

by terryl1 on Fri Mar 29, 2013 1:22 pm

Hi Dana H, we communicated earlier in the thread. I am in the CRD trial in the NIH, now on the maintenance part. I am doing well and feel, well, normal....knock on wood.

Anyway, the trial involves 8 cycles (about 8 months) and you will be required to be there 3X per month. Each visit will involve two days. You will be required to stay overnight as the carfilzomib and the dex are given, say, on Tuesday and then Wednesday as well. You will have on week off.
You can stay in a local hotel most of which have NIH discounts and you will be partially reimbursed by the NIH for the stay, travel expenses, etc. I usually stayed at one of two Marriotts in Bethesda. They have shuttles to the NIH and downtown Bethesda. I always drove down with my wife or brother as I once had a weird reaction to the meds. and didn't trust myself driving alone or taking the train. I live in NJ near Philly, so it was about 2.5 hours. Many of the people in the trial come from a lot further away and some even get short term apartments. If you have any other questions, let me know or send me a private message if you are registered. Terry L.

[DanaH]

Re: Would you consider treatment for High Risk Smoldering mu

by DanaH on Fri Mar 29, 2013 2:02 pm

Hi Terry,

Thanks once again for your response !

Terry, I am not registered for the trial at this time.. I have been diagnosed with High Risk SMM by a local onc/hemo (multiple myeloma specialist??) and have struggled with whether this is the correct diagnosis. Dr. Voohrees had responded earlier that he thinks I need another set of eyes and thought the NIH Natural Progression study could provide me with a good set to determine my "label and status". I am scheduled to go down in late July for that, but I am just trying to learn as much as I can before I do so I can be ready for any conversations we may need to have. I am booked at a Marriott with an NIH patient rate for this upcoming visit.

Thank you so much for clarifying the 2 days...I wasn't thinking consecutive days when I read what everyone wrote. Did you stay overnight for 2 days? or did you just do 1 and returned home on the 2nd day after that treatment?

Thanks for sharing your experiences...and again, so very very happy to hear you are feeling your normal self .... and I will also knock on wood for you !

Best,
Dana H.

[terryl1]

Re: Would you consider treatment for High Risk Smoldering mu

by terryl1 on Fri Mar 29, 2013 2:25 pm

Hi Dana, I stayed just one night. Hopefully, in July, you will get an idea where you stand. Thanks for knocking on the wood for me and good luck this summer at the NIH. Keep us posted.