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Friends and Family Affected by Myeloma

How is everyone?

#1

It's been a quiet group this summer. I hope this means that all of you are well and enjoying friends and families. We have a good number of members who would like to hear from you, whether times have been good or bad. Please check in and let us know how you are faring.

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#2

Hi everyone. My husband is starting treatment with a new drug for him on Monday, two days a week for three weeks, then one week off. We’re hoping it will halt the rise in MM proteins. I look forward to having people to reach out to to discuss ups and downs with. If our experiences can help anyone, that would be great too.

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#3

Surely hope this treatment will work for your husband. I am still in remission, going on 7 years. My problem is the neuropathy in my feet caused by the velcade, so they say. Regards.

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#4

I have amyloidosis as well as MM and am checking in to the hospital on Wednesday for my stem cell transplant. Of course, I am a little apprehensive. I don't even know what to worry about so right now I am worrying about being bored. Love to hear any encouraging - reality based - words about this experience.

Thanks,

Kathy KT

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#5

Thank you for those encouraging words, zeepee. 7 years of remission is amazing. Congrats!

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#6

I should also say my hubby also has some neuropathy in his feet from velcade but only recently has it really bothered him. My foot rubs seem to help him.

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#7



Kathy KT said:

I have amyloidosis as well as MM and am checking in to the hospital on Wednesday for my stem cell transplant. Of course, I am a little apprehensive. I don't even know what to worry about so right now I am worrying about being bored. Love to hear any encouraging - reality based - words about this experience.

Thanks,

Kathy KT

Hi Kathy, I had stem cell transplant coming up on 2 years ago. It was a lot easier than I expected. Make sure you have LOTS of ice chips on hand during the melphalan infusions in the days preceding transplant. Chewing them beginning 30 minutes before the infusion, all during the drip and for another 15 -30 minutes after helps to avoid the nasty sores in the mouth that some people get. I did it, and it worked for me. I thought I'd be bored (where I was treated, they keep you in hospital in an air-locked isolation room, for on average 3 weeks) but truth be told, I didn't get through the stack of books & magazines I took. In fact, after the first couple of days, I felt well enough to work from my room, via the internet. Hang in there - the reality is rarely as bad as your imagination. Saying prayers for a smooth ride for you.

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#8

Hi All,

Almost 2 years post-transplant and I continue to do well. Feeling great, no meds, crazy work/travel schedule - life has returned to normal. At the moment, I'm vacationing in California, in 2 weeks I'll be working on a project in Berlin. Life is good, and I'm grateful I had such a great response to treatment and am able to enjoy it fully. My only little complaint is some residual itching from the case of shingles I developed in February. Apparently, MM patients are at higher risk of developing shingles which is why more and more treatment centers are keeping patients on anti-virals for a year after completion of chemo/transplant. If your docs want to discontinue anti-virals any earlier, ask them about the increased risk of shingles! Had I known about that, I would have asked my doctor to keep me on them longer (where I was treated, they stop anti-virals just 30 days after chemo ends).

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#9

Thanks for responding, everyone, it's great to hear you are doing well. Tammy, I have been living and working in Holland for nearly a year. I'm going to Berlin next week and then to Prague -- I can't wait. I didn't know that about the shingles. That is good information.

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#10

Judy, I hope your husband does well with the new drug, and Kathy, good luck with your checkup!

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#11

Zeepee -- 7 years. That's terrific. :)

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#12

Hi again, everyone. Husband starts on Kyprolis today. I’m wondering if anyone has experience with this drug. Any info is appreciated.

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#13

Hi Judy,

I was treated with Kyprolis in combination with dexamethasone and thalidomide. For me, it went pretty easy, my energy levels remained almost normal throughout and I was able to continue working, only complaint was a tiny bit of neuropathy (tingling in the tips of a couple of fingers) and a change in the way things tasted. Both of those resolved after finishing treatment. The best news is, I achieved a very deep response on kyprolis (complete remission, confirmed by marrow biopsy). Good luck to you and your husband!


Judy said:

Hi again, everyone. Husband starts on Kyprolis today. I'm wondering if anyone has experience with this drug. Any info is appreciated.
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#14

Tammy! Such wonderful news! I’m so happy for you and this gives my hubby and me such optimism! Thank you for sharing.

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#15

Judy, keep us up to date on how things go. how many cycles of chemo will he have? and will he have stem cell transplant at some point? Good luck to you both, I'll keep your husband in my heart.

Judy said:

Tammy! Such wonderful news! I'm so happy for you and this gives my hubby and me such optimism! Thank you for sharing.
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#16

Kyprolis gave me dramatic results, by the end of the 2nd cycle, and was pretty easily tolerated. Saying prayers that the same holds true for your husband. I know that this roller coaster of highs and lows we're all on is just as hard on the spouse as on the patient - and in many ways perhaps even harder.

Judy said:

We started on this journey 5 years ago. He's had chemo, then autologous stem cell transplant, more chemo. In and out of remission twice, now out. His maintenance dose of velcade stopped working, so on to Kyprolis. I know dexamethasone is part of it but he doesn't think thalidomide is. He likes to protect me so I'm not at all of his appointments... Not my choice. He'll have two infusions a week for 3 weeks, then one week off. This will continue until hopefully we see an improvement in his numbers.
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#17

Well, two treatments in and so far the two effects are sleep disturbance and some fatigue. The sleep disturbance really bothers him. Has anyone with similar reactions found something magic that works? Yesterday he was feeling pretty bleary, maybe a bit of chemo brain or perhaps lack of proper rest.

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#18

Hi ArtF,

I hope what you write is correct - that's be great! - but I recently had a consult with one of the top myeloma doctors at Mayo Scottsdale, and he explained to me why myeloma patients are indeed at increased risk (and not just for shingles), and why his department therefore keeps patients on anti-virals for a year following completion of treatment. Since I don't trust myself to explain what he told me adequately, here's what the Myeloma Beacon recently published on the topic:

In healthy individuals, plasma cells secrete antibodies to fight off infections, and the production of these antibodies is properly regulated. In most multiple myeloma patients, too many plasma cells are produced, which leads to increased levels of antibodies. Most of these antibodies are abnormal, however, so they do not function or fight off infection properly. As a result, myeloma patients have an increased risk for developing infections.

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#19

Hi everyone, we’re pleased with his response to the Kyprolis. Some fatigue, loss of appetite, but BP has been great compared to previous meds. It’s too early to tell how he’s responding but return to fairly normal energy levels has been a really good thing for him. Hope you’re all well.

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#20

So happy to hear this, Judy! Keeping fingers crossed that he has a deep response.


Judy said:

Hi everyone, we're pleased with his response to the Kyprolis. Some fatigue, loss of appetite, but BP has been great compared to previous meds. It's too early to tell how he's responding but return to fairly normal energy levels has been a really good thing for him. Hope you're all well.
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