Revlimid/Dexamethasone

This is for Jan (webeenthere)

 My husband had plasmacytoma and went into multple myeloma in

March of 08,  We just finished the revlimid, 28 days with dex once a

week, 20mg.  So far only an extreme hyper personality and can't sleep

and seem to come down to earth.  Except this week, he is only taking

the 20mg.dex.  Can you tell me how old your husband is?  My is 77 yrs.

and doing fairly well.  He is being treated by a hematologist at the Mayo

Clinic.  Where are you being treated?  If you don't mind telling more

about your experiences, that would be great.

Thank you,

ozy (a newbee to this disease) 

On 5/1/2008 ozy31 wrote:

This is for Jan (webeenthere)

 My husband had plasmacytoma and went into multple myeloma in

March of 08,  We just finished the revlimid, 28 days with dex once a

week, 20mg.  So far only an extreme hyper personality and can't sleep

and seem to come down to earth.  Except this week, he is only taking

the 20mg.dex.  Can you tell me how old your husband is?  My is 77 yrs.

and doing fairly well.  He is being treated by a hematologist at the Mayo

Clinic.  Where are you being treated?  If you don't mind telling more

about your experiences, that would be great.

Thank you,

ozy (a newbee to this disease) 

Dear Ozy,

My husband is 58 years old.  In April of 07 he had a nose bleed and went to the emergency room.  Blood work that day showed a hemoglobin of 10.  Our family doc started him on iron.  In May of 07 he was admited to the hospital with a bad headache and blood work then showed his hemoglobin had dropped to 8.  Our family doctor started running tests and found myeloma.  At that point he had no bone involvement showing on the full body xrays.  He was started on Dexamethasone, 40 mg, daily for 4 days, then off for 3 days, then dex for 4 days, then off for 3 days.  He did that for one month, with no improvement.  The doctor then started him on Revlimid, 25 mg, 21 days on the med and 7 days off, plus he takes dexamethasone, 40 mg, one day a week.  This combination has worked well and he is in "near complete remission" at this time.  About six weeks after we found out he has myeloma, he started having back pain and they found he had compression fractures of the T- 6 & 7.  He was fitted with a brace for his back and wore that for about a month, his back healed and so far he has had no more problems.  He also had 2 plasma cell masses in his abdomen, but they are gone now, due to the Revlimid and dex.

He is being treated in Kearney, Nebraska and also at the University of Nebraska Medical Center.  Our experiences are quite different from other myeloma patients in that my husband has many other health issues.  He has had B-cell lymphoma, he has Crohn's disease, he has a clotting disorder, he has had a heart attack (4 years ago) and in the middle of trying to deal with myeloma, he had to have emergency hernia repair.  In the beginning, he was getting 2 units of blood a week (for about a month) to keep his hemoglobin above 9, to ease the stress on his heart.  He now takes procrit shots, 40,000 units, every two weeks and vitimin B-12 shots once a month.  Those meds have helped keep his blood counts up.  He also gets Zometa in an I.V. every 4 weeks to strengthen his bones. 

There are many people on this site that have used natural products that have helped them with their myeloma.  We have to be very careful and research natural products, because of my husband's Crohns and the blood thinners he takes, so our experience is mostly with prescription meds.  If you are interested in natural products, I'm sure there are many on this site who will be glad to help you.  I thought I had found the ideal natural product in curcumin (curry powder) until my research found that it is also a blood thinner and should not be taken by those taking blood thinners.  The people on this site are great and have way more knowledge than I have.  They are very willing to help and share their knowledge.  They have really helped answer a lot of my questions. 

You husband's hyper activity may be caused by the dexamethasone.  My husband is the same way on the day he takes dex.  Your doctor should be able to help with that, if you ask.  Let me know if there is anything else I can help you with.  Take care & God bless.

Jan   

To: Jan (wevebeenthere)

Thanks for your prompt reply, boy have you ever been there.  We are so

lucky that so far no major events of real pain or hospitalizations.  It is

great to know there are people out there that can help with their ex-

periences.  We are getting our revlimid thru the Veterans Health Care

if there are other veterans out there.  

Jan:  Keep your chin up and know we are thinking of you. 

Dear Ozy31,

Sorry to hear about your husband, but it sounds like he's doing pretty well, all things considered. My dad was diagnosed with Multiple Myeloma this past November -- and is 77 also. He is Stage III with much bone involvement/damage, but about six months into this now, happy to say he is doing much better.

I am so glad you just mentioned that about Revlamid and the Veterans Association. My dad was a vet long ago and i was just recently looking into getting him additional coverage thru them as a back up, i have the applications almost filled out and am rounding up the required paperwork, etc. (i was worried about him being turned down at first, because i read in the booklet that for the past few years, due to high demand/so many vets, they can no longer take anyone that is in the lower categories -- but he has two purple hearts, so i think that is going to be his saving grace). Anyway, his treatment is currently Velcade - he is just starting his 4th cycle/round of it, and thankfully, the cancer is still responding to it.

However, i have been worrying about the time when one day he may go on maintenance, or when the myeloma comes active again, and he might have to go on Revlamid or one of the other crazy-expensive medicines -- which are completely unaffordable for him even with his medical insurance/coverage... but i'm so glad to hear you say that the Vet Assoc. is covering his Revlamid. Do you know if they completely cover it, or does he pay a large co-pay, etc?  Any info would be appreciated.  Thank you & best of luck!