[Helenk]

First time here- questions on treatment

by Helenk on Sun Mar 25, 2012 12:51 am

My husband Tom was diagnosed several months ago with multiple myeloma and the p17 deletion. I feel like I'm speaking Greek and don't even know what this all means. He was weak and anemic and that's how they found it. He also has heart disease and has had major bypass 14 yrs ago. I've been waiting for 14 yrs for him to hv a heart attack and now it's cancer! Anyway, he's on Velcade/dex and his iga went fm 2500 to 700 and the spike fm 2.6 to .67. I guess that's good? Anyway he has to decide on having the SCT and we don't know what to do. He feels good now physically and I'm afraid the SCT might make it all worse. Can we wait? How long can u stay on Velcade, does anyone know? I'd appreciate any advice.

[suzierose]

Re: First time here- questions on treatment

by suzierose on Sun Mar 25, 2012 10:16 am

Hi Helen!

LOL@

"I've been waiting for 14 yrs for him to hv a heart attack and now it's cancer! "

You are not alone in these sentiments. My maternal grandmother had cancer, my mom waited 50 years to get cancer, instead she had 5 coronary bypasses. I went for annual well check as cardiac prevention, insisted on cRP test instead they found cancer/ multiple myeloma!! lol..that's life. It's God's plan not ours!! lol..we just gotta roll with the punches.

You're right. Learning all these acronyms and terms is like learning Greek, Latin and French simultaneously. Just take it slow and know that we have all been on your path figuring out what each test means and which ones to watch, not to mention what the norms are.

Yes, you are seeing the tests for IgA and M spike move in the right direction..it's good.
Getting a SCT is a very personal decision and you will find several threads on the topic where folks discuss their views. There is quite a range. What we do know is that the medical evidence shows whether you get it early or wait until after relapse it does not change the outcome, both timings work.

Here is a link to one of many threads on stem cell transplant:
https://myelomabeacon.org/forum/return-of-m-spike-t654.html

Regarding Velcade, it appears patients stay on it until they have a CR (complete response) or until they get a side effect that is not tolerable. Such as peripheral neuropathy which is pretty common on Velcade. You may want to ask about getting SubQ vs. IV Velcade as it seems to diminish the neuropathy which can be pretty painful and make daily living difficult. Some people get rashes with the SubQ.

There are several threads on Velcade in the forum as well.

Look under Treatment/SideEffects and you will likely find a lot of topics with feedback to many of the questions you are having.

Wishing you and Tom well...sending blessings, too

[Eric Hofacket]

Re: First time here- questions on treatment

by Eric Hofacket on Tue Apr 17, 2012 6:20 pm

Multiple Myeloma Research Foundation at UCSF last month and learned some interesting things about treating the disease. There were doctors there from UCSF, MC Anderson, and Mayo Clinic. The consensus was that Multiple Myeloma is a very individual disease more so than other cancers. One doctor said that when had patients with other cancers; he already had an idea of what the treatment plan would be even before meeting with the patient the first time. Not so with multiple myeloma. He has to spend more time examining and evaluating multiple myeloma patients on an individual basis because there really is not just one multiple myeloma but multiple myeloma appears to be a broad range of plasma cells disorders that can requires case by case development of a treatment plan. What may be good for one patient may not be the best for the next. There kind of is a broad consensus amount institutions around the country that as a result of clinical trial results, the various Velcade, Revlimid, Dex treatments you read about here on this forum should be used for initial treatment but there can be variation from doctor to doctor in these treatment plans as they are still relatively new each multiple myeloma patient is a unique case and responds differently. Even in their own institutions these doctors said there was no uniform consensus about what the best treatment approach for multiple myeloma was. To show illustrate the extremes they cited one institution in Southern California that takes a minimal approach with multiple myeloma treating it minimal drug therapy and reluctance to do SCT while on the other end University of Arkansas has moved to tandem SCT with very aggressive multiple drug chemo, hitting the disease with everything in the multiple myeloma treatment arsenal. Some institutions have not done an allo SCT on in over a decade while other s still use it frequently often. Most institutions are in the middle between these extremes. I would just recommend finding an oncologist you trust and believe in and be cautious making decisions on your husband’s treatment, how long he should stay on Velcade or whether he should receive a SCT, based on what other individual multiple myeloma patients say they have done or are doing. This can be a very individual disease.