Results with Revlimid

[Lydia]

Mom’s started taking Rev and her HGB started to go up right away and were almost low normal and then they started going down again and fast. She was tx-free for 3 months. Just had her 2nd tx in 1 month a few days ago.

She started taking Exjade with the Rev, so we’re thinking the Exjade was stopping the Rev from working, since this was the only change – (except her doc increased her diabetes med – checking into that also). Went to Exjade site and it seems this may be the case since it can may cause “spntaneous” low counts in elderly patients, etc. She’s stopping the Exjade and we’re praying her RBC will bounce back up since she’s now high risk for tx’s as mentioned below under A & E Antigen post. I know a couple people on this forum are taking both Rev and Ex with no problems – but everyone is different and these are both powerful drugs.

Just wanted to advise her experience(s) in case this may help someone else. Any comments, experiences appreciated too of course.

[Cindy]

I started with Exjade in March and with Revlimid in May. I was only able to take Revlimid (Revl) at 10mg for 10 days when both platelets and WBC’s lowered to the point where I needed Neupogen and Platelet transfusion. I was off Revl until my counts became acceptable in July and used Revl at 5 Mg for 20 days when the counts were again too low. At that point my hemo and I stopped Revl and Exjade. I was able to start Revl 7 days later (5 mg every other day in early August) as the counts became acceptable again and I stayed on it this time. My Hgb is 11.7; whites at 3.6 and the platelets are holding at 59. I haven’t had a tx since early August Before I started Exjade my platelets were normal and my whites were 3. I noticed that those two counts were slowly decreasing and not recouping when I had transfusions as they did previously prior to starting Exjade. I think Exjade does create problems with wbcs and platelets, and according to my hemo, the company doesn’t think this is the case. We will have to wait out the results of further studies on Exjade.

[Naomi]

Hi Lydia and Cindy:
I have been on REV since 11/03. Added exjade Apr 06 and all sorts of trouble broke loose. It caused such diarrhea and then c-diff. I am now on my THIRD bout of c-diff. This causes the revlimid to go right through my system and it is not able to work the way it should. Prior to Apr I was holding my own with all my counts. They were not up to normal, but were stable and the doc and I were both pleased. Now we are trying to get rid of the constant diarrhea and c-diff.
I even had to have platelet txs (never had any before) and two red cell txs which I had not done since Dec 03.
My opinon is exjade is for the birds and I do not tweet.
Take care and hope you get over the problems
Naomi

[patti]

I am curious about the connection of Exjade to platelets and whites. My MIL started Exjade because her iron was at 3200. She is only take 250mg a day but she has become transfusion dependent on platelets weekly for the past 10 weeks. Oddly, the same amount of time she’s been on the Exjade. Is it likely there is a connection here? She already has symptoms of iron overload so I’m not sure not using the Exjade (or some form of chelation) is an option but I wonder if we stopped the Exjade, would her need for platelets weekly stop? Just curious? Anyone tried this? How long did it take for the platelet tx to stop? Thank. Interesting discussion.

Patti

[Cindy]

Patti,
I only had rbc tranfusions prior to the start of Exjade. The platelets dropped from 290 to 155 in 45 days and then started Revl. They then dropped to 12 in 30 days (was off Revl with in 16 days). That is when I had the platelet transfusion. I feel that there may be a correlation. The platelets have never recovered above 59 and I haven’t had any bruising. However, not enough has been reported to substantiate this according to my hemotologist. I hope there are some studies for this soon.

Cindy

[Naomi]

Patti:
I mentioned this to Dr John Bennett at U of R. He said that he was not aware this was happening, but would look into it and see if others were having the same effect.
Exjade gave me severe diarrhea and then followed c-diff. I have not been able to beat the c-diff and this causes the medicine to go straight through my system without working.
Naomi

[Lydia]

Geeeeez, forgot to mention mom’s wbc went way down to the point she needed Neupogen also! Do think there is a definite connection to Exjade. Went to the Exjade site and it said there have not been enought studies in patients over 65 so caution should be taken with Exjade. Called mom and her platelets are fine so far. She had some blood in the commode and we were shaken thinking it was the platelets now – just guess from on-off diarrhea from the Rev.

Mom stopped Exjade also – will keep everyone posted and advise if hgb and wbc starts to go back up. She really needs to lower her iron, but at this point it seems to be a non-issue since she’s a “high risk” for tx’s – but must stop them and worry about the iron later.

Thanks for posting everyone. We certainly may figure this one out ourselves!

[patti]

Lydia,

We’re in the opposite boat that your mom is. My MIL has obvious signs of iron overload damage and I’m not sure what will happen if we go off the Exjade. But at the same time if it’s making her platelet dependent what do we do? This is not a fun spot to be in at all. Thanks for sharing your experience.

Patti

[Lydia]

Patti,

How old is your MIL? The Exjade site stated that the trials did not include anyone over 65 – or at least not enough patients over 65 to report results, side effects, etc. for that age group (or something to that effect). Mom is 78. Cindy is only 63, but the others experiencing these problems are over 65.

Read the geriatic, warnings and side effects section at Exjade.com.

[patti]

Lydia,

My MIL is 76. I had read somewhere about them not studying the over 65 crowd.

patti

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