[AlexD]

Linda,

I have been receiving blood transfusions since 1998. I have never had any issues with it being called ‘dangerous.’

Though, there are inherent risks of course, there ought to be no large ordeal getting some blood for your mother.

In fact, I had one today–4 units. Once my HGB goes below 10.5, I receive 4 bags; below 11.5, two bags.

For a second opinion, I’d have to suggest coming to Cleveland. There are some fantastic hospitals here–University and the Cleveland Clinic.

If your mother isn’t feeling well and would benefit from a transfusion, don’t be bullied into waiting for her HGB to drop. My former doctor would do this to me.

Kind regards,
Alex

[AlexD]

Hey everyone,

I’m glad to see it’s doing something. My retic has been up, hovering at about .5, or there abouts. I even had one of 7.2, which must have been a fluke, although the lab did double-check it.

I did have to recently stop taking it, well about a week ago, due to some nasty side-effects that may, or may not, have actually been caused by the Revlimid. Insomnia, nausea, rash, etc..

I was wondering though, has anyone else noticed serious sleeping issues with the Revlimid? I haven’t slept a wink since starting it, and, well, it really wears me down.

Well anyway, time for another doctor’s appointment in the morning.

-Alex

[AlexD]

cthomas555,

That is incredible. I’ve been on Exjade for 18 months now and started Revlimid about a month ago. Ever since the Revlimid, I’ve been having chronic diarrhea with some serious dehydration.

Also, I noticed you live in Shaker Heights, as do I. Amazing how small a world it really is.

If you don’t mind me asking, who is your hem/onc?

-Alex

[AlexD]

faith’s daughter,

I’ve been taking the Revlimid now myself for the last 3 days without any noticeable side effects besides fatigue. I take it at night as well.

My doc just said the regular 81mg aspirin tabs would suffice with the Revlimid.

I was wondering, what is the average of time, if any, of side effects concerning the cell counts? I’ve been feeling way more fatigued then originally thought.

Alex

[AlexD]

Patti,

Having looked over the insert that’s glued to the bottle, it doesn’t say anything about not grinding it up.

I’ve been grinding for a long while now and haven’t noticed a rise in ferritin.

It works well for me, but I’d ask your doc if you have any quirks about it.

Alex

[AlexD]

janeann,

I myself am on Exjade. I have been taking it for over a year now after taking desferal for years. The correct dose is determined by weight and side effects.

I can say that so far, I have had no side effects of Exjade, while as I was on Desferal, I had debilitating stomach cramps and pain around the injection sites.

Exjade works well, I am currently on a 1,500mg dose although I ought to be on a 2gram. My iron is currently 2900 and has been declining. I started Exjade when it was about 4800.

It’s easy to take, I use a mortar and pestle to grind mine into a powder, mix it with about 8oz. of orange juice and chug.

Hope this info helps

[AlexD]

Glad to see some good results after signing my life away that I won’t reproduce whilst on this drug.

I’m starting Revlimid tomorrow, 10mg with a course of asprin.

-Alex

[AlexD]

I cannot say that I’ve ever had that kind of reaction to a transfusion and I receive one every 3 weeks. (4 bags, ~1.2L)

I do receive leuko-reduced and always have, but due to allergies of the protein in the blood, mine gets washed. The worst reaction I’ve had to blood is body-covering hives and shortness of breath. (allergy)

Definitely ask about about the white cells in the blood, if any.

Alex

[AlexD]

Russ,

I am currently going to University Hospitals of Cleveland after a 9 month stint at the Cleveland Clinic that ended about 4 weeks ago. I’d been coming there for a while and no one noticed a gradual drop in my platelet count. After leaving to go back to UH where I was a pediatric patient in the past, they diagnosed me in a matter of weeks.

Looking at the site here, I see that my former physician Jaroslaw Maciejewski, MD, PhD, is listed under “MDS Centers for Excellence.” I’d been under his care at NIH and the Cleveland Clinic in the past.

Although I was diagnosed at UH, I will be calling Dr. Maciejewski next week.

Thank you for your best wishes as I have the saame for you.

[AlexD]

Jack,

To be honest with you I’m not sure why my doctor is supporting Revlimid. I’ve been reading up about it and merely thinking about the use of it, all of which seem almost pointless at the moment.

My current treatment is just blood transfusions and Exjade. I receive roughly 1.2L of blood (approx. 4 washed bags) every 3 weeks.

They had not mentioned anything about chemo or demethytating agents as far.

For the sct, they told me that that would be way farther into the future because the risks involved currently outweigh the risks of my current treatments.

I was never told the exact percentile of blasts but merely that I had a ‘huge’ amount. I’ve got another appointment with my hematologist in about 2 weeks.

[AlexD]

Thank you for your warm welcomes!

[Author]

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