[Lydia]

Thanks everyone for responding. Once again, what would we do without this forum ?

We could search and search for answers, but it sure is much quicker just asking here!

Suzanne, looking forward to you keeping us up-to-date after the lecture at Hopkins May 11.

[Lydia]

Thank you Naomi and Carl! Very encouraging in regard to Revlimid since mom has 5q as do both of you !

Did either of you have any side effects from Revlimid and did they subside or go away?

Carl – hope also you will be tx free as I’m sure you will be. Hope you are encouraged also by Naomi’s response.

Will keep you posted on mom’s experience. Thanks again – greatly helped our stress level.

[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 . . .

[Lydia]

Ron from Michigan – where do live and are you seeing a doctor in Michigan as well as Houston? Just wondering as mom lives in Michigan also.

Assume you were tx free during Revlimid treatment. Wonderful – even if temporary. Mom was on Procrit for awhile and was tx free then that stopped working also. Back to tx’s also.

Sorry to hear about the clot and taking you off Revlimid. Do they think the Revlimid caused it? Sure hope the vidaza helps you ! Sure it will !

What were YOUR side effects with Revlimid. Mom is going on it soon – am keeping up-to-date with everyone’s symptoms. Will keep posting with her experiences with it also.

[Lydia]

LuAnn, believe it or not try dabbing some apple cider vinegar for the itch and rash. ACV has amazing qualities as I’ve learned from others. A friend of mine had a severe case of shingles and nothing helped until someone told him to try the vinegar! His doctor was amazed as they always just prescribe a pill (with all the side effects of course). The smell will disappear after it dries – but it’s better than the itch and rash!

Chris, glad to hear you’re feeling better. Assuming your fainting and tachycardia is gone !

Mom can’t go lower than 8. Her tx’s have been closer now also. We’re hoping it just takes more energy in winter to keep warm, etc. and that’s why more tx’s. (Yeh, I know this may be a case of wishful thinking). Birds have to eat a lot more during winter to keep warm. Hopefully now that it’s getting warmer her (and your) tx’s will get back to the longer schedule. Let’s keep our fingers crossed! And keep giving us those full tx bags !

[Lydia]

Patti,

Dee and her family are in my prayers also. Mom has a prayer group and she’s added Dee and her family as well.

[Lydia]

Cheryl – glad to hear no side effects! Encouraging for all of us. Above you said it’s correct that the Exjade is excreted mainly in your feces but gave no details. I’m assuming it changes colors? Sorry, I had to ask about your poop! (as a side effect only). Hee, hee. Hope no one thinks I’m out of line. My apologies if so . . .

Chris – sorry to hear about fall and E.R. visit – you were very lucky though not having hit your head on the way down! Hope you’re feeling better.

Mom’s tx were 3 months apart and now six weeks – a few times 4 weeks. She’s noticed that the tx bags are fuller some times and take longer. Hopefully that’s your case – less blood volume in the bad = more frequent tx’s.

What is tachycardia? Assume it relates to the heart.

Her hemo has scheduled her for a bone marrow test this week before starting her on Exjade. It’s been 2 years since last bone marrow.

[Lydia]

Covergirl, are you experiencing any side effects?

Stoli, did you experience any side effects in the beginning with Exjade – and how about recently? If so, did they fade after awhile? Glad to hear it’s working!

Chris, please keep us updated on your progress, etc.

My thoughts and prayers are with everyone.

Mom is seeing her hemo Tuesday and will apply for Exjade. As I’ve read here, it takes several weeks to get it. Will keep everyone updated on her side effects, progress with it also.

[Lydia]

Thanks Neil and bper for replies. So very sorry about your dad bper. My heart goes out to you.

Have confidence in having mom go there now and will contact Schiffer ahead of time since it will be quite the trip for her. Never thought of doing that ahead of time. Thanks for the help!

[Lydia]

Chris – congratulations on getting insurance to pay for Exjade! What a sense of humor you have – know it sure helps to cope and helps HEAL too. Please keep us posted during Exjade treatment – hope everyone else will also.

Mom will be starting with Exjade in the next few months after a few more ferritin counts. Will keep you posted on her experiences with it. Also – we were thinking of just taking half the dose for the first week to minimize side effects and get her system used to it – whether the doc says to or not. Would this delay improvement? Going to call Novartis direct on this. Any thoughts ?

[Lydia]

Frankie, mom’s doc said to be careful when putting her socks back on. Make sure the sock that was on the right foot goes back the right foot, left on left. She wears same socks a couple of days during winter since her feet don’t sweat now. Hers hasn’t traveled to the other foot yet. Wonder if it can be transferred from fungus touching sheets. Just in case – she wears socks to bed. This summer will present a problem for the socks-to-bed ritual!

[Lydia]

cthomas555, praying you can get exjade via Patient Assist, as mentioned by others.

How high was your iron when they began treating you for it. Did they do any other tests (besides blood work) to confirm overload?

Mom’s doc wants her to start exjade also. Can’t wait to see what problems she runs into also. She’s confirming overload now.

[Lydia]

Thanks for replys.

Patti, when you said “when it comes to iron overload it seems the risks outweigh the benefits by a longways” do you mean that treating the overload is very risky?

[Lydia]

Thanks for all your work! Figured may as well add some family also as we’re all affected:

Lydia Desmet, Rick Desmet, Winnora Olepa, John Olepa, Kari Olepa, Elma Olepa (all Michigan)

Thanks again!

[Author]

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