New Exjade postmarketing update

[marlene]

Jim…..is that 450 ml each month? I think John is going to hold off doing anymore Exjade and will do the same if his HGB can get up to 12. He used to do theraputic phlebotomies but it became too much of a strain on his bone marrow and he wasn’t making up the difference quickly. His doc was OK with phlebotomies as long as he could maintain a HGB of 10. He’s thinking of doing 250 every other month at some point. I think this is the way to go for anyone who’s counts are restored because it’s more effective.

Marlene

[Jimbob]

Marlene,
They told me that a pint is about 475 ml and they take 2 pints once a month. At first, I got very tired for a couple of days. Last couple of times, though, it didn’t even bother me. I do drink a LOT of water everyday and supplement it with Smart Water the day of and before the phlebotomies. Again, this method is usually not possible for anyone dependent upon transfusions or with lot HGB. I thank God everyday that I have gotten this far.
Jim

[marlene]

Wow Jim….that’s alot. I’m glad it’s working for you. I’m sure John will take the same path also at lower amount though.

M

[Jimbob]

I had another bloodletting on 2/13/2007. The doctor just called and said that my serum ferritin level is now done to 2417. At the rate it is decreasing, I may be in the normal range by May.

[JSRN]

Mom saw her oncologist today who insisted she do something about the high ferritin. She said the CT showed her liver to look like cirrhosis. So she is going to try subq Desferral, 7 nights on, 7 off. Said it was less toxic than Desferral IV.
Also, the rash on mom’s port site, that she insisted mom take VFend for @ $400, (mom refused) turned out to be nothing but irritation from the stuff they used to clean the site. The dermatologist gave her prescription strength steroid ointment on Monday, and it is already less red, less blotchy and almost gone! All for $5.35!!!!

[marlene]

JSRN,

Why can’t she do the desferral via her port? When John had his hickman line in, he used that? He went subQ only when the central was pulled. And that’s awesome about the irritation…$5.35!

Jim….That is great! John would really like to go that route but his HGB is not getting much above 11. And he’s reluctant to start up the Exjade again. It’s been creating problems for his creatinine. He just had a blood draw to check it again. Hopefully is back to normal.

Marlene

[JSRN]

Quote:

Originally posted by marlene:
[QB] JSRN,

Why can’t she do the desferral via her port? When John had his hickman line in, he used that? He went subQ only when the central was pulled. And that’s awesome about the irritation…$5.35!

She did the IV route once before. It didn’t really help. But now I wonder if they didn’t give it enough chance. Her old oncologist always stopped things after a few months if it didn’t seem to work. He would say it doesn’t justify the cost. And apparently IV Desferraal is harder on the heart than subq. Since she is 81 and has some mitral valve issues, the new oncologist wants her to go the subq route. I will have to investigate this more.

[LuAnn]

Hi Marlene,
I don’t have dad’s counts readily available but I believe the criteris is greater than 1.5 for creatnine. They take him off the exjade for a month or two until the level goes down to 1.2 or 1.3. It’s takes a while to go up but he is monitored monthly. We found that when the createnine is high, the lasix doesn’t work as well to release the excess water so that’s another issue we need to monitor. He has conjestive heart failure so we need to monitor the water weight he carries. The doctor’s office does a great job managing his condition and tries to balance it all. Hope this helps.

[marlene]

JSRN….Hmmmm…..even at very slow infusion rate? I can see that the rate of infusion could be an issue. Is that the case? John did his IV infusion over eight hours. The slower the infusion, the more effective the therapy. Sub-q is a pain.

LuAnn….thanks for the info. We just got John’s results back and his creatinine is back down to normal. It continued to climb after stopping the Exjade to 1.7 so the doc was concerned. If he goes back on it, it will be at 500 mg and just cycle off more frequently. He’s also considering doing phlebotomies….250 ml every other month. John also holds onto a lot of water but no one really knows why. It started with his treatment and has been problematic ever since. He does has neurapathy from the treatment which is a big contributor.

Marlene

[helenr]

Subcutaneous desferal may be a nuisance but it cetainly works the best if you cannot use Exjade. My husband often does it overnight every day when he isserious about reducing the ferritin. It is hard to reduce the ferritin while having Txs every two weeks.

I help him with the process and he uses a plastic canula which he leaves in place for only three days. We used to leave it for five days until he started getting infections at the site. All the tubes etc are covereed with waterproof oppsite.

I hope this is some help

Helen

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