Bad results with Revlimid

[Gordy]

I’m very discouraged. My 73 year old husband, Gordon, has been dealing with MDS for about four years. We were very optimistic when his Oncologist arranged for him to get Revlimid. He started on it March 6th – and was taken off of it on the 22nd. He’s now in the worst shape ever. We are just back from the VA, where he had a RBC reading of 8.0, his lowest ever. He is extremely weak and tired. Plus, long standing spinal cord and disc problems have been reactivated and he has chest congestion, nausea, dizziness, and new allergy symptoms making the whites of his eyes bright red.

Gordon lost a kidney to cancer in 1991 and had bladder cancer with successful BCG treatment in 1997. He has type 2 diabetes. He had been taken off of one of his diabetes meds, Glucophage, because his Creatine level had gone up. Now he has a badly swollen foot, and they say he has protein in his urine.

My question is why on earth did the Relamid make him so sick? So many people reported such good results with it. And can anyone offer me any idea of how long it will take for these effects to subside?

Jan

[patti]

Jan,

My best suggestion would be to call the maker of Revlimid and ask them about the side effects and if/when they’ll wear off. I’m sorry to hear the Revlimid didn’t work for your husband. I know it holds much promise for some people.

Best Wishes,

patti

[CarolineG]

Jan,

I am so sorry that the Revlimid did not work for Gordon. Everything that I have read about it spoke so highly of it. I can’t answer your questions because I don’t know anything about the drug, I’m sorry.

Have any of your doctors told you what their next plan of action will be?

I’ll keep you and Gordon in my thoughts and prayers.

Caroline

[Neil]

Hi Jan,
Lower counts are typical of the initial stages of Revlimid. It takes a while for the counts to begin to go up — if Revlimid is the answer. The time period varies from patient to patient. It does not always work on all patients.
My doc thought about using it on me, but was concerned how he would support my Platelets, RBC and WBC. Procrit and Neupogen MAY have helped the RBC an WBC, but there was no obvious way to support platelets. I was not anxious to procede with a typical platelet level of 6,000-10,000.
The results on his other patients was not that encouraging. Only one had any improvement. Now that patients question is “for how long”. Those with improvement while on Thalidomide—the prercurser of Revlimid— found it to be temporary. Some had normal to near normal counts for a year or more.
Does Gordon have secondary MDS?
Has he had his eyes checked? The diabetes may have an influence on them. My hemo insists I have a periodic eye exam. The combination of MDS/diabetes might create some problems he would want to stay on top of.
My glucose counts went way up over the past few months. My internist prescribed Amaryl. It brought my counts to a normal range quickly. You may wish to discuss this drug with his docs to see if it would be appropriate. My blood pressure went up a bit after going on it.

[Gordy]

Hi,
Yes, we had checked the side effects before Gordon began the Revlimid. He is just so much more sick than he expected to be. He isn’t eating and has constant nausea, a gagging cough and some vomiting.

He never had allergies before beginning the Revlimid, but got a rash and now has chest congestion and painful, red & burning eyes. His primary doc gave him Allegra and two kinds of eye drops.

Gordon has been wearing his soft collar to keep from moving his neck, because the troublesome cervical discs became so painful after beginning the Revlimid.

Gordon is asleep right now. When he wakes up I will have him read your posts and see what he wants to add.

Jan

[Brenda P]

Jan, please keep in touch with me because my dad has the same effects. He is so weak, tore a hip muscle completely from the bone, can’t talk, etc.

See my post under “help, my dad’s doc is awful”

this is such a horrible disease.

[Lydia]

Jan, hope your dad is much better by the time you read this post.

What dosage was the Revlimid? I’ve read here that many people had the dosage reduced to 5mg – assume this is the lowest – because of side effects or because they were improving.

What does having protein in urine mean? Does Revlimid affect the kidneys also? Assume this will (or has) cleared up also.

In my thoughts and prayers . . .

[Eric K]

I’m 55 and have had RARS since about ’99. I was on Procrit for several years but eventually became transfusion dependent about a year ago. Tx used to be 3 to 4 months apart but are now 2 months apart. After a TX, Hgb would be around 11 and slowly drop until it got in the low 8’s, then another TX and start the cycle again.

I started Revlimid 5 weeks ago (10 mg) and my hemoglobin seems to be holding constant in the low 9’s for the time being. The main side effect was dry skin which was causing itching but using hand cream seems to deal with that problem. I’m inclined to get another Tx and see if the Revlimid can hold the Hgb steady around 11. I don’t seem to have any other side effects.

[Engel]

Eric.
My husband is 69 and was dx with RARS inJan. 06.Heis on Procrit once a week. He has had 3Tx and they seem to hold 5 weeks. His doctor said he is not a candidate for Revlimid, but I question this. In fact I seem to do the research on this disease with this wonderful forum. So few people seem to know what this is all about. Help. Gloria

[LuAnn]

Jan, I’m sorry the Revlimid had such a difficult effect on your husband. My dad was on Vidaza but had a difficult time this past cycle and the dr. is now looking at Thalidomide and Revlimid as options even though he does not have the 5q. I’m concerned about the side effects of both drugs but with no other options I’m not sure of the choices we have. My prayers are with you and possibly over some time your husband will recover from the effects of the drug.

[Eric K]

Gloria, When I started Procrit, I was on 40,000 units (1cc) once a week. That didn’t seem to do much good, as my hemoglobin continued to stay low. I then upped it to 60K ~1 1/2 cc then 2cc once a week and things still didn’t change. my hgb kept dropping. My understanding is that Revlimid is intended for folks who are missing the 5q chromosome ????… but that is not the situation that I have. My hemotologist wanted to try the revlimid anyway and was able to get the prescription approved and I’ve been on it for almost 2 months so far. Since I started it, my hgb has remained stationary which is better than I was doing on Procrit.

If the procrit is not working for your husband, then the Revlimid might be an alternative. Another possibility is a combination of Procrit and Neupogen as LuAnn’s husband is on. I never tried that combo but would have if the revlimid had not been available.

Eric

[Eric K]

Gloria,
The procrit didn’t work very

[Eric K]

Gloria,
I believe Revlimid is supposed to be used for MDS when there is a problem with the 5Q chromosome. I don’t have that issue but my hemotologist was able to get me on it anyway. So far, it has kept my Hgb from going lower.

An alternative to the Revlimid is a combination of Procrit and Neupogen (growth hormone). If I couldn’t get revlimid, that would have been my next choice.

Another alternative is to get a different Hemotologist who will make revlimid available to your husband.

[Eric K]

sorry about the above repeats.. when I sent them I got a message that the network couldn’t take them so I retried a few times before I realized that they all went thru.

[Lydia]

Eric, I noticed you live in Canton. I live in Southgate and mom’s up north. What hemo do you see as you seem to be happy with him.

Also, how much do you have to pay for the Revlimid. Mom’s supposed to start it and her insurance won’t cover since not “formulated”. It’s $2000 so she is starting with Exjade first hoping Revlimid will come done in price. (Ya, right!)

See also feels Exjade is too expensive and is thinking about doing Desferal which we feel is barbaric.

[Author]

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