[sharples74]

Husband with multiple myeloma - hospice being considered

by sharples74 on Tue Feb 18, 2014 2:42 pm

Hello all,

I am new to this site, so if I do something in the wrong place, please let me know. I am searching for help.

My husband was diagnosed with multiple myeloma last September 2013. He has had 7 treatments of Velcade, however treatment was stopped due to the severe side affects of neuropathy in his feet and hands.

We saw the oncologist last week and he didn't recommend continuing the treatment and suggested that we think about hospice. The neuropathy is severe -- cannot feel his feet or hands. He is very weak and sleeps most of the day. He doesn't have a lot of pain; some days has some, but not severe.

I don't think we are ready for hospice and was totally surprised when he mentioned it. His overall health is not well as he had a serious stroke in January 2011 which left him in a wheel chair and with a feeding tube. All he basically told us is that he would continue to get weaker.

Looking for advice and thoughts of what I should be looking to happen.

Thanks.

[NStewart]

Re: Husband with multiple myeloma - hospice being considered

by NStewart on Tue Feb 18, 2014 9:58 pm

The first thing that I would suggest is that you see a myeloma specialist if your current doctor isn't one. There are so many more treatments other than Velcade and many with Velcade included. Just trying one drug and then stopping it because of neuropathy doesn't seem like your doctor is familiar with myeloma. Was your husband receiving infusions of Velcade or the sub cutaneous injections of Velcade?

Call the IMF, or go on their website, and ask for the names of myeloma specialists that may be in your area. At the very least change oncologists. Remember that you are in charge and if you don't feel that your doctor is providing the best treatment, or you disagree with the treatment, you can change doctors. It is your husband's, and your, life that is at risk here.

The best to your husband and to you in seeking other options for successful treatment,
Nancy in Phila

[Guitarnut]

Re: Husband with multiple myeloma - hospice being considered

by Guitarnut on Fri Feb 21, 2014 9:26 am

You definitely need to find a myeloma specialist.. I had the same experience with Velcade. The neuropathy got really bad in my hands and feet and as I heard one patient explain it perfectly, my body felt like a tuning fork. I burned my feet a bit in extra hot bath water that I couldn't feel when I stepped into the tub. Didn't realize how hot it was until I started to sit down. When I told my ONC about it he simply reduced the dose I was getting rather than eliminate it altogether.

I don't know the details of your husband's situation but even if Velcade does need to be completely stopped there are other options available. Definitely find a myeloma specialist and their input.

[Dr. Edward Libby]

Re: Husband with multiple myeloma - hospice being considered

by Dr. Edward Libby on Sun Feb 23, 2014 3:32 pm

Greetings from gray Seattle,

Severe neuropathy is a well known side effect of Velcade. Stopping the Velcade at least for now is definitely the right thing to do. If the neuropathy goes away after the Velcade is stopped then it would be reasonable to restart it -- probably at a lower dose.

If your husband has had a partial response or better (50% or more decrease in the myeloma numbers) then it might be reasonable to give him a break from chemotherapy and give him time to regain strength and hopefully for the neuropathy to improve off of Velcade. When the myeloma numbers (M-spike) climbs again then he could be retreated with something other than Velcade.

Of course I have not seen or cared for your husband, but if he does have other severe medical problems one must take the "big picture" into consideration. You, your husband, and the oncologist need to consider whether or not treating the myeloma is helping or hurting your husband.

These are tough decisions but the real question is "quality of life" -- are we helping him more than hurting him with the chemotherapy? The oncologist should guide you and inform you as to the choices and pluses and minuses of treatment and share their expert opinion. Ultimately, though, the decision is between you and your husband as to whether or not treatment should be continued.

I wish you and your husband all the best in your journey with this challenging and difficult disease.

[sharples74]

Re: Husband with multiple myeloma - hospice being considered

by sharples74 on Sun Feb 23, 2014 10:03 pm

Thanks all for your replies.

My husband is being treated by a multiple myeloma specialist and has had a second opinion with a multiple myeloma specialist as well. All in agreement in regards to treatment, etc. Treatment is being put on hold and we will continue to watch his numbers to determine where we go from here.

However, due to his poor overall health, we have agreed for now that we need to consider his quality of life for now versus more treatment. He is very weak and sleeps must of the time. However, he has not had issues with bone fractures or kidney failure. With that being said, the last scan results reflected "holes" in his bones pretty much throughout his body.

He is having some difficulty making water, therefore now has a cath, however, they seem to think this is related to the prostate versus the bladder/kidney. He has a test on 3/3/13 to determine bladder function. If the bladder is functioning okay, then will proceed with test/procedure for the prostate.

I guess my question to the board now, is if we don't proceed with additional treatment, what should we be looking for in regards to the progression of this disease? Is the progression of the disease a painful disease going forward, as thus far, pain has not been an issue.

My husband and I have been married for 38 years -- I am hoping and praying that I will not have to sit and watch him suffer.

Thanks again for your replies.

Judy

[cindyl]

Re: Husband with multiple myeloma - hospice being considered

by cindyl on Mon Feb 24, 2014 9:24 pm

First of all, I wish you both the best. If your husband is taking a break from treatment it can't hurt to consider hospice. And they will answer your questions much better than all of us. But the most important thing for you to remember is that hospice does not need to be permanent. If your husband improves and you feel he can resume treatment, then you stop hospice. I work in a nursing home, and we often have people go on hospice, then improve and hospice is no longer needed. The other side of that is often people wait too long to have hospice on board, and could have benefitted from those services earlier. Its a hard decision. But if he is having a break from treatment, then it can't hurt to check into it. They will give you amazing information, and support. And it is far from a death sentence. But were the end to be near, you would both benefit from the help and support.