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Feeling Uneasy

Feeling Uneasy

So I've been very sick the last few days. Either the world is spinning or I just feel uneasy. Smell is another thing. Everything smell weird. Meat taste so nasty I gave up trying and things I do eat have a tin taste or sour taste.
I'm wondering if I stop some of the teatment maybe that will help. I can't do the next 4 months like this.

A MyMyelomaTeam Member said:

Colleen, They May have to take away one Myeloma Drug at a time to see which one is causing the severe nausea and dizziness. Then if needed replace it… read more

posted about 5 hours ago

Hi - I Am A 65 Year Old Pretty Long Term Survivor Of Multiple Myeloma. I Am Looking For Info Regarding Cost Of Revlimid

Hi - I Am A 65 Year Old Pretty Long Term Survivor Of Multiple Myeloma. I Am Looking For Info Regarding Cost Of Revlimid

I am about to go on Medicare and was SHOCKED at the cost of the copay for Revlimid which I am starting as maintenance therapy. Even with the supplemental prescription coverage, it is obscenely expensive. Why is there no generic available? I am wondering how others deal with this? We don't qualify for the Leukemia/Lymphoma Society assistance program. Anything else out there? Thank you.

A MyMyelomaTeam Member said:

Thank yiu

posted about 8 hours ago

My Husband Has Kappa Light Chain MM. When First Diagnosed..his Light Chain Was At 1800...he Has Gotten As Low As 400 ....

My Husband Has Kappa Light Chain MM. When First Diagnosed..his Light Chain Was At 1800...he Has Gotten As Low As 400 ....

has now jumped to 800...doc changing meds...from Kyprolis, Revlimid and Velcade..to Daratumumab(Darzalex)....we are hoping this knocks the nbrs back down a bit....hoping for a transplant but not sure what the magic Kappa light chain nbr is going to have to get to..Doc is hoping to get it to 100....but.....

A MyMyelomaTeam Member said:

He actually had a copy of the orders with him...just human error...it can happen to anyone ...

posted 5 days ago

Darzalex

Darzalex

I am beginning treatment with Darzalex what have people experienced with this treatment? I had a Stem cell implant 18 yrs. ago and was in remission until now. Tried pomalyst and ninlaro with no sucess.
Dr.Stan

A MyMyelomaTeam Member said:

Yes i am on darz and ninlaro..my numbers got better but no to a stable number i told my dr
1 more blood test then something new I believe Ninlaro just… read more

posted 6 days ago

Anyone Receiving DARZALEX® (daratumumab) In Lieu Of A BMT?

Anyone Receiving DARZALEX® (daratumumab) In Lieu Of A BMT?

BMT Team Dr says Frank is not a candidate for BMT but recommended DARZALEX (daratumumab). The side affects are some of the ones that are already affecting Frank:
• tiredness
• shortness of breath
• trouble sleeping
• feeling weak
• cough
• muscle spasms
• back pain
• cold-like symptoms (upper respiratory infection)
• nerve damage causing tingling, numbness or pain
• swollen ankles
• constipation
• lightheadedness
He also has Parkinson's and we are… read more

A MyMyelomaTeam Member said:

I am on Darzalex infusion. After reading the list of side effects you posted, you may not experience anything new. Good luck to you.

posted 6 days ago

Does Anyone Have Experience With Accupressure Or Accupuncture To Relieve The Footpain Of Neuropathy?

Does Anyone Have Experience With Accupressure Or Accupuncture To Relieve The Footpain Of Neuropathy?

My husband was diagnosed with MM in September of 2019. He received one high dose of radiation for the fist size tumor in his ribs, and then started the Velcade shot once a week, along with the Revlemid (14 days on, 7 days off) and the Dexamethason. 5 Weeks ago, he started getting cramps in his feet and tingling in his hands. He told his Oncologist about it, when he received the weekly Velcade shot. The following… read more

A MyMyelomaTeam Member said:

Hi Ursula, I also have bad Peripheral Neuropathy and I am on Gabapentin 1800 mg and it wasn’t until I got to this dosage that it helped. Talk with your… read more

posted 14 days ago

Itching Scalp

Itching Scalp

I started my chemo last Thursday. Have had my first dose of Velcade and have been taking 25mg of Revlimed daily. Last night my scalp started to itch and it’s continued today. Had anyone else experienced this, and if so, any suggestions on relief?

A MyMyelomaTeam Member said:

I am on revlimid and scalp itches all the time! I thought it was just hair growing back in. Now it makes sense.

posted about 11 hours ago

Pain From Port

Pain From Port

I had my port put in end of March. Went well and has been working . Two days ago I woke up and it hurt . I touched it and where the hold is burned when touched and then whole thing hurt . It was early to call Dr soni put the cream on it to try to stop the pain. It did so then I was like I can't call the Dr it doesn't hurt and more .
Next day it hurt but I have treatment so I have to put cream on because if it nothing the pain of them putting the iv in would hurt to much . I did tell the nurse but… read more

A MyMyelomaTeam Member said:

Alleycallie4 no I haven't heard about a spray. The cream works when I put it on. I was just concerned about the pain when I didn't use it. I didn't want… read more

posted 9 days ago

CO2 Numbers Have Decreased Below Normal On Last Two CMP's. What Would Cause This?

CO2 Numbers Have Decreased Below Normal On Last Two CMP's. What Would Cause This?

CO2 two weeks ago was 21 (22-33 is normal). This week another CMP showed CO2 at 18, even lower. Has anyone else had this happen? It has dipped slightly in the past, but always came back to normal on the follow-up CMP. It has never been lower than 21, so this is very alarming. Doctor doesn't seem concerned, just says "we'll monitor". All other numbers are in normal range, no kidney problems or liver problems. He had an echocardiogram… read more

A MyMyelomaTeam Member said:

Also, wearing the masks can give you a headache from breathing your own Co2. Just FYI

posted 6 days ago
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