[Wayne K]

Re: Two different treatment philosophies; how do you chose?

by Wayne K on Thu Mar 20, 2014 11:03 am

I had a great response to Velcade/Prednisone and it worked quickly. The thing is that wouldn't work for everyone and it's hard to second guess the doctor (s). I believe I would changed doctors if I felt I had to question their judgement beyond being educated.

[Multibilly]

Re: Two different treatment philosophies; how do you chose?

by Multibilly on Thu Mar 20, 2014 7:23 pm

Hi Wayne,

Do you live outside of the USA? I'm guessing so since you took prednisone? As I recall, it seems like dex is the preferred steroid her in the USA? Note that there was an earlier thread on prednisone versus dex.

https://myelomabeacon.org/forum/velcade-melphalan-prednisone-hair-loss-t2752.html

[gardengirl]

Re: Two different treatment philosophies; how do you chose?

by gardengirl on Thu Mar 20, 2014 7:29 pm

Thank you for the responses so far. After reading the SCT experiences thread, I'm now terrified of an SCT. In fact, I am hoping to delay treatment a little longer and use as little meds as possible! (We'll see what my doctor says next week!)

[NStewart]

Re: Two different treatment philosophies; how do you chose?

by NStewart on Thu Mar 20, 2014 8:41 pm

GardenGirl,

If you went to Hopkins because it is close to where you live, as well as their reputation, University of Maryland in Baltimore also does transplants. They do store stem cells there.

[Multibilly]

Re: Two different treatment philosophies; how do you chose?

by Multibilly on Thu Mar 20, 2014 8:54 pm

Hey Gardengirl,

I can empathize with your current feelings.

I think one thing to consider regarding meds is that there is something to be said for knocking the disease down.So, while I believe that a lot of folks are probably overmedicated and there is definitely a need to custom-tailor drugs and their dosages to unique individuals (which really isn't done much today), you also want to avoid undermedicating yourself.

As Dr. Berenson likes to say, it's not a race, but a marathon that we are in. You need to find the right stride and be in good shape for the hills that are yet to come in the race ... and also have plenty of strategies for dealing with the tough spots in the race (i.e. alternative drugs) mapped out should you start to falter. So, you may want to also ask your doc what Plan B and Plan C are drug-wise (it sounds like one doc is already thinking that way as far as keeping Revlimid in the wings after starting you on CyBorD). Then again, you may never need a backup plan, or new circumstances could always change what your next choices might be. Tis the nature of the disease.

[gardengirl]

Re: Two different treatment philosophies; how do you chose?

by gardengirl on Thu Mar 20, 2014 9:13 pm

Hi Nancy, I did also go to the University of Maryland. However, my insurance will only cover SCT at Johns Hopkins (JHU). That's why I'm in such a predicament as to what treatment to start! The doctor at JHU said they never have a problem collecting stem cells and I like the idea of doing everything at once. I guess I'm still trying to get a grasp on the "when" ... just how do the doctors decide it's "time"?

Multibilly, I like your idea of Plan A,B,C. That's what I will try to accomplish in the next several weeks. Thanks again.

[goldmine848]

Re: Two different treatment philosophies; how do you chose?

by goldmine848 on Fri Mar 21, 2014 7:23 am

I think that there may be a bit of a misunderstanding on the storage issue. Putting aside whether insurance will pay for storage in the absence of an intent to move forward with a transplant in the near term, I think that there are two scenarios: some facilities will collect and store stem cells even though you do not plan to do a transplant in the near future; other facilities will only collect right before a transplant but will store them for say a few weeks if necessary and also will store the stem cells not used in the transplant for a possible second transplant.

Th facility where I am being treated is in the latter category: they will not just collect and store but will store the "leftovers" indefinitely in case they are needed. As for insurance, the collection and storage is built into the cost of transplant and so is covered.

[Wayne K]

Re: Two different treatment philosophies; how do you chose?

by Wayne K on Fri Mar 21, 2014 10:43 am

Multibilly wrote: "Hi Wayne, Do you live outside of the USA? I'm guessing so since you took prednisone? As I recall, it seems like dex is the preferred steroid her in the USA?"

Southern Missouri in the good old USA. My medical center and doctor is in Springfield MO.
I have to admit I haven't done any research into prednisone vs. dex. I have COPD and a low GFR, if that would have a bearing on it. In reading an article comparing the two i see that prednisone is preferred if asthma is present so even though I don't have asthma maybe the doctor thought COPD was close enough?

I suppose in my case the fact that it worked well for me is the bottom line.

Last edited by Wayne K on Fri Mar 21, 2014 10:58 am, edited 1 time in total.

[Wayne K]

Re: Two different treatment philosophies; how do you chose?

by Wayne K on Fri Mar 21, 2014 10:49 am

gardengirl wrote: "Thank you for the responses so far. After reading the SCT experiences thread, I'm now terrified of an SCT. In fact, I am hoping to delay treatment a little longer and use as little meds as possible! (We'll see what my doctor says next week!)"

Gardengirl I wouldn't psych yourself out over the SCT. I went through one at age 70 dragging COPD and a diminished kidney function along. I then had a case of C Diff while there, but here I am 4 years later. I wouldn't want do another, but, then again, I don't want to go to the dentist either.