Exjade and Revlimid

[marlene]

Have you considered that maybe it’s the Exjade causing the drop in counts verus the Revlimid not working. I say this because the post marketing data on Exjade states that there have been reports of cytopenias, including neutropenia and thrombocytopenia, in patients treated with Exjade. Of course they state that “most” of these patients had preexisting blood disorders.

Just something to consider.

Marlene

[Mary4Mike]

Marlene,

I just pulled out the package insert for Revlimid and thrombocytopenia and neutropenia were the most frequently reported adverse events reported. (this seems to be the case for all the MDS drugs).

Exjade hasn’t caused any adverse blood counts
during the time that he has been on it (17 months). He just started his third month on Revlimid and his counts are not rising….in fact he had his first tx yesterday since June 6/07. We are praying that the Revlimid kicks in pretty soon!!!! We aren’t blaming the Exjade for the non-reponse, but we want to be sure. He has gone off the Exjade for now to see if he gets a more positive response to the Revlimid. His ferritin is a little over 1000.
I guess our loved ones are the guinea pigs in all this, but we are thankful that they we have the drugs to try.

[marlene]

Hi Mary,

That makes sense stopping the Exjade for now to see if it helps. And it seems like everything effects the bone marrow.

Good luck….Marlene

[choijk]

Hi Mary,

Just following up to see how your husband’s counts are with the Revlimid. Is he still off the Exjade? I’m curious because I also posed the questions to my hematologist about the Exjade/Revlimid counter-active combo, and he too said there is no data to support this.

[Mary4Mike]

Hello June,

Mike is in the middle of his fourth round of Revlimid (started June 18). During this period of time, he had 2 tx in the 3rd round and he is going in tomorrow for a third tx. His Hgb is 9 and has been dropping. His other counts are low, but have been slowly climbing. We aren’t giving up on the Revlimid, yet. We are considering one more month if the doctor will go along with it. If and when he goes off the Revlimid, his doctor wants him to discontinue any chemical treatment to see where his counts end up. He said that he has been taking drugs to suppress his counts for so long, he wants to see where they level out at. Of course, he won’t let him go too low. He will tx as needed…it is too hard to play catch up if he waits too long for blood. Then the next step is going to be trying Dacogen again. As far as Exjade, he was off approximately 1 month and we didn’t notice any improvement in his counts. He has been back on a few weeks.

Has your father’s shingles calmed down? I had shingles when I was in high school and it is VERY painful. The area where you have them is sensitive for a long, long time. I hope he has recovered. I noticed that Mike takes the same supplements as your dad (plus a few more ).

Sorry this is long, but I appreciate you asking about my husband. This forum is a true blessing.

[choijk]

Marry,

Thanks for your reply! It is always so helpful to exchange notes. I know what works for one may not work for another. But still, I am always interested! I hope Revlimid does the kick for your husband! I am just hoping hoping hoping this is what we’ve been looking for. But I think our hema was trying to prepare us… he said think positive, but chances of my dad becoming transfusion independent is about 15-20% at this time.

What kind of other supplements is your husband taking? I think my dad is getting tired of taking so many supplements. I told him that if he doesn’t want to take them any further, then it’s up to him. We’ll see. I think he thinks all the pills he takes is “medicine” and hes worried what the “medicine” will do to his body.

As for his shingles, thanks for asking. It went down a lot! I guess my dad took Acyclovir at the right time and his sypmptoms along with the rash/blisters are nearly all gone. He said his pain level is currently a 0.9 from a 1-10 scale, 1 being the lowest. His rash looks merely like scabs now but he still holds his shirt out when he walks. I’m glad the shingles is almost passed us. I thank god that it went away so fast.

Now I’m just worried about the side effects of Revlimid. Before the Rev was shipped out today, I had a 30 minute conversation with the Kaiser pharmacist. I guess its a Kaiser protocol to go through some kind of interview process with the patients?? I know the pharmacist had to tell me the side effects to look out for, but it just gave me anxiety and made me worrisome. So many things to look out for.

Anyhow, keep us posted Mary! Our hema said it takes about 8 weeks (so I guess that’s 2 rounds) before seeing any progress.

[Mary4Mike]

June,

Yes, there is a “survey” that must be taken before every cycle of Revlimid is issued….through the drug company AND the pharmacy. The possible side effects sound scary, but so does not being proactiv with this disease. Mike has only experienced constipation with the Revlimid. We just have to be extremely observant of changes.

Mike feels the same way about the supplements. Once in a while he takes a day off from them. He also takes a multi vitamin/mineral, prostate support, P-5-P, chromate, curcumin, ginger, Vitamin D, N.A.C. 500, Probiotic, vein and circulation support, flax oil and digestive enzymes.

[JoyceDee]

Hello! My husband, Jim, has just started on Exjade. Because of its possible side effects, and the fact that Jim has only one kidney, we have hesitated using Exjade…but he has iron overload from the blood transfusions he has had to get. We would greatly appreciate any info others have gained from the use of Exjade. Does it REALLY eliminate enuf iron to warrant the side effects?? Thanks for any help.
Hattie

[Mary4Mike]

Hattie,

My husband has been on Exjade for 20 months now. The first 12 months he was off tx, however he has since resumed them. He had a starting Fe of 2500. He had it checked not long ago and it is now 590. Yes, it works and in Mike’s experience, with little side effects (that we know of). He has his kidney and liver function monitored and so far there has been no effect.

I wish the best for your husband, Jim, and you.

[JoyceDee]

Mary: Thanks for responding to my entry. Jim has been on Exjade a month now. We will find out if there has been a drop in his ferritin level next week. He is having CBC, CMP and INR (he takes warfarin) checked every week. He is NOT on Revlamid. What are YOUR thoughts now about taking Revlamin and Exjade at the same time? How is YOUR husband doing?
Best wishes.
Hattie

[Mary4Mike]

Hattie,

We really don’t know if Exjade effects the efficacy of Revlimid and neither does Novartis. Mike took 5 rounds of Revlimid. He even went off Exjade for a month to see if it would boost the effects of Revlimid…it didn’t. Revlimid wasn’t the answer for him. He is going to begin Dacogen on Monday. One other thought, don’t be discouraged if his FE doesn’t drop that much the first month. Mike’s doc never checked him again for 3 months.

We are leaving Florida today after a wonderful month in your beautiful state. We have already had snow at home:(! Oh well.

The best to you and your husband.

[Jimbob]

I am in a different situation than most of you as I have beaten CMML with a SCT 44 months ago. Before the transplant, though, I had over 80 transfusions of packed RBC. I had a feritin level of more than 6000 but the the doctors said it would go down on its own. Three months ago it was still 5400. With the advice of several doctors, I decided to do therapeutic phlebotomy instead. Third time, so far, taking two pints of blood out every month. We’ll see what happens.
Jim

[bety]

Anyone with very low platelets on revlimid? Has the drug lowered the platelets further?
What side effects have you experienced with exjade, if any?
All the best, bety

[helenr]

Bety

When my husband began revlimid both his neutrophils and platelets dropped. The neutrophils were so low they stopped treatment for two weeks and restarted on 5mg. Apparently the platelets are the last to recover and after 7 mths they are still below normal. After 4 mths his HB was 140 which was wonderful. We think things are slowing down as his Hb is slowly dropping but still just below normal and no Tx for over 4 mths.

I think it is essential to persevere with your medical people watching carefully as it is good when it finally kicks in.

good luck

Helen

[bety]

Helenr and others,
Thanks for your detailed responses. I wrote back almost immediately, but my post was not registered. I got some sort of error message.
Unfortunately, Ed has been bleeding nasally for several days, almost constantly. Platelet txs did not help. Tomorrow, we have an appointment with our ENT specialist. I hope he can stop the bleeding. I’ll keep you informed.
All the best, bety

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