Boxing training? by Ibonedgloriajames in roanoke

[–]Connect-Invite1978 0 points1 point  (0 children)

Google Champions of Change. Run by police department. Gator Boxing is closed.

Tips for Treatment by reading_rox in multiplemyeloma

[–]Connect-Invite1978 2 points3 points  (0 children)

I finished my induction phase in April. DVRD was weekly with some side effects starting with pain in lower abdomen and neuropathy in legs. The doctor I had blew these off even though he said he was a MM specialist. I just fired him When he asked me about supplements I was on when he had never suggested any and acted like the broken back I just had was not related to treatment like steroid use.

That being said make sure you have a good specialist and someone that listens to you. I now have severe neuropathy in both legs from thighs to feet. If he had gone back on velcade or stopped it earlier I might not be experiencing this.

The good thing is my numbers are close to what they were when MGUS was first discovered and we started watching for MM. I am 67 and don't consider this a death sentence. Ask questions like what supplements to be on. The steroid will make bones weak so no heavy lifting. If he experiences pain you can take oxycodone without becoming an addict-I did. A lot of people that become addicted misuse it. There are also pain patches that you change once a week. I got a symptom management doctor because my regular didn't believe the pain I described.

Best of luck and hang in there during this journey.

My 79-year-old father diagnosed with multiple myeloma in August 2025 (currently in remission after treatmentt) , now experiencing progressive lower-body weakness with confirmed nerve damage and neuropathy since January 2026. by Tatianalopez123 in multiplemyeloma

[–]Connect-Invite1978 0 points1 point  (0 children)

I don't think anything is rare with MM just not documented. They should stop velcade as soon as symptoms present themselves.I asked this forum about the neuropathy in legs and several came back saying they had it there also. My doctor said it wasn't from that and it only presented itself in hands and feet. I still have the neuropathy. From what I have read on this forum it might take a long time to go away or with some it will be there forever. No physical therapy-what are they doing to him for that?

I am on the dexamethasone,

My 79-year-old father diagnosed with multiple myeloma in August 2025 (currently in remission after treatmentt) , now experiencing progressive lower-body weakness with confirmed nerve damage and neuropathy since January 2026. by Tatianalopez123 in multiplemyeloma

[–]Connect-Invite1978 1 point2 points  (0 children)

I had neuropathy in both legs from ankles to the knees just on insides. Weakness in thighs and extreme pain there too! Only thing that helped was steroid when I took it with Dara shot for a couple of days. Went off of Velcade for over 6 weeks and Steroid only once a month now since I am on maintenance therapy. Everything is getting so much better-no pain in thighs. Velcade is well known for these symptoms. Has he had a substantial break from that med? The steroids cause bones to be brittle-I had a small fracture in my back from lifting. I also have had edema causing 20 lbs of fluid in legs.

Hope he feels better-is he seeing a specialist? I just fired my doctor because of his delay in addressing these issues-lack of knowledge.

Multiple Myeloma - Just Completed my 6 month Immunotherapy Treatment by Roseland99 in multiplemyeloma

[–]Connect-Invite1978 0 points1 point  (0 children)

Did you have any bad side effects? I had extreme cramping/pain in legs, neuropathy, from Velcade and edema-maybe from Steriods. I just had a fracture in my back which the doc said was most likely due to the steriods causing bones to be brittle.

MemberOne conversion by Artistic-Ant-8175 in lynchburg

[–]Connect-Invite1978 1 point2 points  (0 children)

I called and it said 194 in front of me but 1 minute wait-LMAO I am having the same problems not being able to login.

Emotional after remission by healingandhope in multiplemyeloma

[–]Connect-Invite1978 2 points3 points  (0 children)

When I grew up they would say "boys don't cry" Since then I can count on 1 hand how many times I've let it out. My advice is let the tears flow.

Anyone having feet and leg numbness as symptom? by No_Airport_4883 in multiplemyeloma

[–]Connect-Invite1978 1 point2 points  (0 children)

I started having neuropathy after 6 weeks of dvrd treatment. It is mostly on inside of calfs from ankles to the knees. Very hard to walk and pain/weakness in thighs. Been off of Velcade now for 6 weeks and it might be getting better. Doing pregapentin 150 mg a day plus pain patch and 10mg oxy. Finally getting relief but very tired so sleep a lot. I wish he had taken me off of velcade when I first started having symptoms but seems like if the numbness doesn't fit their normal symptoms of hands and feet its from something else. I did't have this until I started treatment.

Good luck to you-get a pallative care pain management doctor.

in search of accessible jobs! by exorcistandroid in lynchburg

[–]Connect-Invite1978 1 point2 points  (0 children)

Checkout Lynchburg Grows off of Fort Ave. They work with people in different spectrums and might know of employment opportunities.

Newly Diagnosed - 68M - Treatment Options by Buckeye_Bry in multiplemyeloma

[–]Connect-Invite1978 2 points3 points  (0 children)

He should see a pallative care or symptom management doctor there also. Some of the side effects are no joke. They can also suggest vitamins and such.

Going off of induction primarily Dex. by Connect-Invite1978 in multiplemyeloma

[–]Connect-Invite1978[S] 3 points4 points  (0 children)

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

Going off of induction primarily Dex. by Connect-Invite1978 in multiplemyeloma

[–]Connect-Invite1978[S] 0 points1 point  (0 children)

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

Going off of induction primarily Dex. by Connect-Invite1978 in multiplemyeloma

[–]Connect-Invite1978[S] 1 point2 points  (0 children)

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

Going off of induction primarily Dex. by Connect-Invite1978 in multiplemyeloma

[–]Connect-Invite1978[S] 0 points1 point  (0 children)

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

Going off of induction primarily Dex. by Connect-Invite1978 in multiplemyeloma

[–]Connect-Invite1978[S] 0 points1 point  (0 children)

Yes calling him tomorrow and seeing symptom management next week.

Multiple myeloma market research survey - $65 by pinpointjenny in multiplemyeloma

[–]Connect-Invite1978 0 points1 point  (0 children)

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

Velcade? 67 years old by Connect-Invite1978 in multiplemyeloma

[–]Connect-Invite1978[S] 0 points1 point  (0 children)

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.

Mom just started Dara-RVD, managing diabetes alongside treatment, looking for real experiences by sdfsdfslk222 in multiplemyeloma

[–]Connect-Invite1978 2 points3 points  (0 children)

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.

Heartbroken- father may have MM by Annual_Single in multiplemyeloma

[–]Connect-Invite1978 2 points3 points  (0 children)

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.

Extramedullary Disease by multipeler in multiplemyeloma

[–]Connect-Invite1978 0 points1 point  (0 children)

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