Exjade update

[Mary4Mike]

Jack,

I see that your wife has been on Exjade for a month now. How is she doing? Does she have to receive tx’s? That seems like a catch 22 …Exjade/tx’s. You wonder if you can ever get ahead of it. That is something we are dealing with right now.

Did you make it to the Univ. of Minn yet? Any news? I hope all goes well with your wife.

Mary

[JoyceDee]

Mary: I’m interested in knowing what you think of Exjade now that your husband has been on it for over a year. Hoping to see a reply.
Thanks

[jaxem]

mary
yes, still on it. got our 2nd month’s delivery a few days ago. man that stuff is expensive!! she’s had no side effects at all from it. we visited Univ Minn. a few weeks ago. they are reviewing all data now & we’re awaiting their decision. she’s a victim of secondary cancer gotten from adriamycin following breast surgery. not only got mds but also damaged her heart. just finished her 6th round administration of dacogen.

how’s your husband doing after all he’s been through? at least with the revlimid, it’s a pill & he can do it at home. when will they do a bmb to see if it’s working?

[Mary4Mike]

JoyceDee,

Our thoughts on Exjade are we are thankful that they came out with a daily at home treatment for iron overload and we pray that it does not have detrimental side effects down the road. We never had to go the desferral pump route, thank goodness. The first 12 months he took it he was tx free. His iron came down to 590 from a start point of 2500. He has since resumed txs and he will be getting checked again next week. He went off Exjade for about a month to see if it may be interferring with the Revlimid treatment. It didn’t seem to make a difference.

Our other thought is the expense of this drug. From the time he started to the present, there have been 2 price increases. You wonder how long one can keep up with that?

I hope this gives you a little insight.

[Mary4Mike]

Jack,

You and your wife have to be sitting on pins and needles waiting to hear from Minnesota. You have got to keep us up on all of this. I am happy to hear that your wife is tolerating the Exjade so well. I am amazed at how it sounds that she handled Dacogen in the same manner. Mike took 2 rounds of Dacogen and it really hit him hard…nosebleeds, mouth sores, EXTREME fatigue, and big drops in counts. He had to have 3 txs with platelets in 3 days. He decided to stop Dacogen and give Revlimid a try since our insurance was now willing to pay for it. The day he went in for bloodwork prior to starting Revlimid, all of his counts were up. His hgb was the highest it has been in a few years – 11. We now feel that the Dacogen was kicking in. He has not maintained these counts since being on Revlimid….a slow decline across the board, plus the occasional tx. He was ready to give up on the Revlimid after the 4 month round, when his counts started rising, just a little. The doctor wanted to try one more round and see what happens. His counts are up and down and he feels like #%&*. He is going to finish this round (3 more weeks), but if there is no BIG improvement he is going off it. The doctor then wants him to be off all treatment to see where his counts levels off at…of course he won’t let him go too low without tx because it is too hard to gain back. After that, he is going to try Dacogen again and just gut out the first couple of months. This time we will be more demanding about being tx sooner. Also, our doctor has not ordered a BMT since the October of 05. We have asked several times and he just says that his bloodwork doesn’t show anything that would require one at this time. Should we be alarmed about this? Should we demand one? One thing I would like to also mention is that everyone on here seems to have such low platelet counts. Mike’s was always between 350 and 500, even while on Vidaza. They dropped significantly on Dacogen to 6. They have since gone up to 250 and are still rising. I haven’t heard of anyone else with these platelet numbers.

Sorry I rambled on so long. It is great to be able to come here and ask questions.

[jaxem]

hi, mary
normal platelet #’s are between 150 to 400 so sounds like your husband’s are ok. the dacogen will really bottom all counts for 2 to 3 weeks (nadir) after starting the admin. I guess as long as he doesn’t have blasts, they can see what they want to see from normal blood checks & not have to do a bmb. they’re really painful so I’m told. yes, it’s a bit tenuous around here without knowing if my wife is accepted or not. I hate to push an answer for fear of rocking the boat. not in a rush to start the procedure until my wife gets beyond the nadir period in another month. she just completed her 6th dacogen round a week ago. thanks for asking.

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