[DorisS]

Recently diagnosed, needing advice

by DorisS on Wed Feb 25, 2015 9:18 pm

I was diagnosed February 4, 2015 with stage 3 multiple myeloma. I'm feeling pressure to make decisions while almost completely ignorant and in shock. Welcome any input.

How important is a 2nd opinion? My Kaiser doc is a hematologist / oncologist and says she has treated many multiple myeloma patients. I could try for a 2nd opinion at UCSF, but would have to arrange and pay for that myself.

Just completed 10 sessions of radiation and will start chemo with Velcade, Cytoxan (cyclo­phos­phamide), and dexamethasone next week. If that goes well, she will send me to Stanford in April for a consult regarding a possible stem cell transplant (SCT).

Have any of you had experience with the SCT program at Stanford?

I will be 70 then and have been told it is a terrible ordeal. Comments?

Trying to stay calm and take it one step at a time.

[Mister Dana]

Re: Recently diagnosed, needing advice

by Mister Dana on Wed Feb 25, 2015 10:55 pm

Doris,

Look in the "Treatments and Side Effects" forum. The first discussion thread, called "Links to Useful Discussions", will provide a lot of information. But, first, you should hear from someone who had good luck with exactly the treatments you are planning to have. That person is me.

This is a linkto my story of being diagnosed and treated for nonsecretory multiple myeloma and some complications starting in December 2013. I took the drug combo you cited, and it worked wonders without changing my life style much at all.

This is a link to to information about my further treatment, an outpatient autologous (self-donated) stem cell transplant in the summer of 2014. Transplant is quite a production, but it was not an ordeal. I had a few rough days, but I didn't even need to be admitted to the hospital.

Any questions, just send me a private message (click on the "PM" icon under my user name to the left), although I am having some trouble sending PMs to other forum members at this time.

You are right to stay calm and take it a step at a time!

Dana

[DorisS]

Re: Recently diagnosed, needing advice

by DorisS on Fri Feb 27, 2015 12:22 am

Thanks so much, Mr. Dana. Your story gives me hope. I sent you a private message – hope it went through.

Does anyone else out there know anything about Stanford's stem cell transplant experience? I know I have a few weeks or maybe longer to think about it. Plus, they could decide I am not a good candidate. But it is constantly on my mind.

Do some people wait on transplant rather than doing it at first opportunity? I will be 70 in March – is age a big consideration? I have been in good health despite two previous fights with breast cancer.

Thanks for any input.

[Multibilly]

Re: Recently diagnosed, needing advice

by Multibilly on Fri Feb 27, 2015 8:45 am

Hi Doris,

Regarding your question about delaying transplant, there are indeed quite a few folks on this forum who have chosen to delay their transplants or forgo the transplant route altogether.

Be clear that there is no right or wrong answer regarding this decision and it ends up being a very personal choice. There are also no definitive studies out there that show that an early transplant will provide longer overall survival than a delayed transplant (but there are studies underway to help answer this question).

If you live in the Bay Area and want to get a second opinion from a top multiple myeloma specialist who will offer you a lot of reasons as to why to not go the transplant route, you might consider making a day trip down to LA (Southwest Air flights from SFO to LAX are cheap) and see Dr. Berenson. Otherwise, the folks at UCSF will likely provide their rationale as to why to consider a transplant (although I'm not clear how UCSF would generally come down on the question of a delayed transplant).

In any case, this is a big decision and I would personally suggest stepping back and clearly understanding your options and what feels right to you before you get "rushed" into anything. I'm going to assume that your earlier radiation treatments and the pending CyBorD therapy will help stabilize your disease and will afford you a bit of time to help sort things out.

You can find lots of threads about the transplant timing discussion on this forum. I might suggest you start by reading the debate that is posted in this thread:

https://myelomabeacon.org/forum/anderson-giralt-transplantation-debate-t4201.html

[DorisS]

Re: Recently diagnosed, needing advice

by DorisS on Fri Feb 27, 2015 1:56 pm

Dear Multibilly,

Thank you for the input. I will read the linked info carefully. Yes, I do feel rushed. It's hard to stay rational and unemotional -- that's why this website seems like a godsend. So many of you with multiple myeloma sound like experts! I know I must become much more knowledgeable too, and fast, but have a strange resistance to that. I guess it is denial or fear ...

Again. Thanks for your service and inspiration.

[MiaM]

Re: Recently diagnosed, needing advice

by MiaM on Mon Mar 02, 2015 2:59 am

Hi Doris,

We were is very similar situation in September when my husband was diagnosed and started the treatment you stated. We are also with Kaiser and felt rushed, didn't have time to get second opinion. It looks like a very standard one and from what I read so far fairly common for newly diagnosed patients. Taking one step at a time worked for us. Staying positive really helps to move forward.

In regards to stem cell transplant at Stanford, I followed KimT, who posted regularly during her transplant at Stanford:

"KimT's Stem Cell Transplant (Stanford, Inpatient)," (forum disc. started July 28, 2014)

There are other transplant experiences listed near the bottom in the "Useful links to previous forum discussions" posting in the "Treatments & Side Effects" part of the forum.

Hope this helps. Wishing you the very best outcome with your treatment!

Multibilly, thanks for the suggestion.

[DorisS]

Re: Recently diagnosed, needing advice

by DorisS on Thu Mar 05, 2015 12:52 am

Thank you so much, Mia.

I feel isolated and it's good to hear from someone with such a similar story. With Kaiser, etc. I am assuming you and your husband are in Northern CA? I am in Sacramento. Wondering if he had transplant? I will send you a PM. Don't want to be intrusive at all, so only respond if it feels comfortable.

Wishing all the best for you both.