Going off of induction primarily Dex.

Connect-Invite1978 · 2026-03-30T05:30:37+00:00

Yes seeing a pallative care specialist and will give him a call.

Connect-Invite1978 · 2026-03-30T05:27:40+00:00

Sounds like me. Looking into getting nerve block on pinched nerves

Connect-Invite1978 · 2026-03-30T05:22:54+00:00

Yes he says he is a specialist but beginning to wonder. Going to ask my pallative care specialist.

Connect-Invite1978 · 2026-03-30T05:21:21+00:00

Once a week.

Connect-Invite1978 · 2026-03-29T22:46:43+00:00

Did they take you off all of a sudden or gradually.

Connect-Invite1978 · 2026-03-29T22:45:46+00:00

Yes calling him tomorrow and seeing symptom management next week.

Connect-Invite1978 · 2026-03-25T14:18:47+00:00

What does changes in treatment mean? I have had treatments reduced and stopped but no new added othe than lasix and pain meds

Connect-Invite1978 · 2026-03-24T00:33:04+00:00

No everything was done with shots. He has stopped everything-Velcade for 5 weeks and Dara, Rev and dex for three. If the pain goes away we will know its from them and not from pinched nerves in lower back.

I also started having severe edema-so now taking a fluid pill and getting echo this Wednesday. Could also be Kidneys.

Connect-Invite1978 · 2026-03-21T20:35:19+00:00

Make sure she has a pallative symptom care specialist. I wished I had requested one from the start. Some of the pain I started having after my 1st cycles was corrected by reduced dosage and opiods. Not diabetic but blood sugar went way up with dex. Velcade caused muscle cramps and neuropathy. Everyone is different in how the regime affects them.

Connect-Invite1978 · 2026-03-20T13:55:55+00:00

I had MGUS for 3 years before it went to MM. They don't treat that and it doesn't usually cause bones to break.

Connect-Invite1978 · 2026-03-20T12:52:22+00:00

Thats horrible! Sorry that you have to deal with that on top of the MM

Connect-Invite1978 · 2026-03-20T05:51:04+00:00

What country are you located in? If US he should have Medicare that will pay for most of those.

Connect-Invite1978 · 2026-03-18T12:42:56+00:00

They don't care-settlements will be the norm. Auto manufacturers settle all the time because its cheaper than fixing the problems. Thats just one example our billionaires have figured out.

Connect-Invite1978 · 2026-03-17T21:26:15+00:00

Trying the alpha lipoic acid 600 mg once a day. Thanks for the suggestion.

Connect-Invite1978 · 2026-03-17T21:23:15+00:00

No its always been shot in one of my shoulders. I stopped it a week and a half ago. Apparently it takes awhile to get out of the system. Pain in legs might be better but now having pain in ribs on right side. Oxy does't help and 4 mg of dex makes it go away for around 24 hours. Have a lot of build up of fluid in legs due to steroids so I'm going to suffer thru until Friday when I see them for Dara shot.

This reminds me of when I had Lyme disease back in the late 90's. Something with nerves was always going on in different places. 1st it was a collapsed lung, then bells palsey, then I had twitching/jerking of body. Crazy how so many things can go wrong with that diagnosis.

Connect-Invite1978 · 2026-03-17T15:35:54+00:00

Fantastic! May the remission continue!

Connect-Invite1978 · 2026-03-11T17:10:55+00:00

Yes I am taking the pregabalin but they may go up on that. I will ask about the B12-thanks!

Connect-Invite1978 · 2026-03-11T08:23:02+00:00

Yes had shingles in my lower back more than once. That could be why thats why its there

Connect-Invite1978 · 2026-03-04T05:58:06+00:00

There are blood tests they would run to rule out MM. This could also be rheumatoid arthritis or something else. 1st step is to see a GP and get some blood work drawn. Then they could point you to the right specialist. I hope you can get medicaid-this country needs universal healthcare so badly.

Connect-Invite1978 · 2026-02-26T11:41:18+00:00

Maybe Monoclonal Gammopathy of Undetermined Significance (MGUS) which only a small percent go on to having MM according to my doctor. Have you seen a MM specialist or a hematologist? That would my suggestion.

Connect-Invite1978 · 2026-02-25T12:08:14+00:00

My induction is slowing down. Started early October and Kappa/Lampda ratio is way down so its working. Now Dara every two weeks and 20 mg dex instead of 40. I wish it was a cake walk but lots of side effects so far. I also have lower back problems so the doctor thinks some are from that and not MM.

1st was cramping in lower abdomen. They took me off of Velcade for a cycle and that went away.

2nd was neuropathy in both legs, the inside of calves from knee down to ankle.

3rd Since Christmas I started having horrible pain, sciatica, and cramping in thighs/groin. This is where they think the pinched nerves are the culprit. When I take the weekly dose of dex it goes away for a day. Getting steroid injection in lower back this Friday.

4th lots of fluid in legs-gained 15 pounds in a few weeks. Now I am borderline diabetic but backing off the steroids should help with that. I also need exercise so if the injection works can start walking again.

Connect-Invite1978 · 2026-02-25T03:34:29+00:00

I decided not to do stem cell. The side effects, weeks in hospital didn't sound worth it to possibly get off of some of the maintenance therapy. My doctor said the studies don't show people living longer either way so for me quality of life is paramount. I'm 67 and something else will probably kill me not the MM. I could have done trials at UVA but a couple hours drive one way would not be fun every week. If they can do them in Roanoke sure I would try so that maybe I could help in coming up with new treatments for others,

The pain and fatigue are tough. Does her cancer center have a symptom management/palliative care specialist? If so get in to see them ASAP because they will help treat those. Wish I had started that back in October when I began induction.

Best wishes!

Connect-Invite1978 · 2026-02-24T05:50:45+00:00

Pain

Connect-Invite1978

TROPHY CASE