[riccd2001]

General procedures call for Cheleation therapy after about 20 units to control iron overload from PRBC transfusions. Just be aware of this in the future. I started PRBC transfusions in 2008 and am still here fighting MDS which is now evolved to AML. I have my CBC draw TWO days before next transfusions so Blood Bank can find compatible PRBC donations owing to my specific antibodies. Good luck!

[riccd2001]

Thanks Bergit. This is so sad to hear. Bob was an inspiration to so many of us.

[riccd2001]

Hi Alisaki: I’m sorry to hear of your situation. Although I’m much older than you, I have 5q del MDS also and did try 10mg Revlimid for 4 weeks. I had to stop using Revlimid because it caused my WBC to fall to a dangerously low level – that is a known side effect for Revlimid.

You say that your WBC is low and I don’t believe Revlimid would be a good treatment for you at this time. With low WBC you have to be careful to avoid infections.

[riccd2001]

Hi Bob: So sorry to hear initial chemo gave you such nasty side effects, and not improve blasts. Stay positive and hopefully you’ll find second round will give better results and not so much of the bad side effects. Best wishes for better days ahead.

[riccd2001]

Hi Bob: That sounds interesting – was this part of a clinical trial?

The last on-line update I heard of was from Dec.2012. As usual there are unwanted side effects but wasn’t aware of possible use for MDS. Here’s that link…

http://www.netdoctor.co.uk/cancer/medicines/sutent.html

[riccd2001]

I think you have what is called Exophytic Nodules (do a search on Google / Wikipedia). I’ve had one on my left forearm for years. Doc did an ultrasound and said not a problem but could remove if desired. I lok at it as a companion and decided to keep it around!

[riccd2001]

Had mine Nov.20th; no problem so far, I’m an over 65 out-patient every 3 weeks so that’s why my doc. insisted.

[riccd2001]

It’s simple Bob. Two kinds of knowledge exist – that which you know and that which you can go to to find.

IMO the faster an MDS patient or caregiver gets a response that may be helpful or of interest to them, the better. Quite a few of us have been dealing with MDS for a long time and forget how we felt so lost when first diagnosed.

Internet forums tend to promote "freedom of speech" within common decency. In UNMODERATED forums like this, SPAM has a longer than usual lifetime. OTOH members on this Site help each other the best they can.

It’s a shame that a new member posts something and ten days later there is no comment or helpful suggestion from anyone. That’s why I continue to come here from time-to-time when there is ZERO response.

[riccd2001]

Hi Suz71: You should make a copy of your posting and start a new thread on the marrowforums.org website for a quicker response.

Eventually some of the good folks and regular members here will contact you but it could take some time before that happens. Sorry to say but the Moderator of this Site is not too quick to clean up the ongoing SPAM that this Site is unfortunately victim to. I’m sure it will be cleaned up when people return from the Christmas/New Years break. You may wish to wait for that. I’ve simply suggested an alternative you may follow. Good luck to you in this New Year 2013.

[riccd2001]

As always YMMV but if my Hgb is above 90, no PRBC transfusion for me. In my case there was no indication of need for growth treatment.

I was on Revlimid at 10mg about three years ago but even with 5qdel my only response was to have REALLY low WBC and after four months w/o Hgb bump, doc had me stop. The main side effect I had was being even more fatigued and into bed by 10 and sleep around clock to noon.

So i’m transfusion dependent every three weeks needing two PRBC units and now at 195units that have ranged from 248ml to 361ml.

I’m very thankful for those blood donors who have given patients like me an extended life.

BTW if you wish to have a faster and more active response to specific questions, drop by marrowforums.org and join in the discussions.

[riccd2001]

Revlimid has shown good results for some MDS patients who have the -5q del condition (about 2 of 3 who were treated saw some benefit). I was on the 10 mg treatment cycle for 4 months but did not obtain a significant bump in Hgb; rather, lower WBC and side effect of being even more fatigued. YMMV but if you can tolerate the side effects, a six month period should be long enough to reflect any benefit. Good luck.

[riccd2001]

I’ve used "BeFresh Mouth Rinse" from Chester Packaging located in Cinncinati (Catalog #000413; UPC 035135004135) for relief of mouth blisters/sores. YMMV but a few rinses does the trick for me.

[riccd2001]

MDS side effects from meds as well as MDS itself affect people differently and YMMV. Have you taken the time to research this site as well as Marrowforums.org ? IMO both have the "SEARCH" option readily available to get some answers.

For some patients the transition from MDS to AML comprised nightly fevers together with sweats. Others have found that being on Dacogen tends to reduce the night sweats to just a couple times in a month. For some with marrow recovering after ATG, the sweats and fevers disappeared.

Good luck with your search for some relief.

[riccd2001]

MDS patient treatment varies considerably. I have been depending on PRBC transfusions for MDS since early 2008.

I think you’ll get quicker and more-in-depth answers and explanations for your concerns from both patients and caregivers at marrowwforums.org

[riccd2001]

I have been depending on PRBC transfusions for MDS since early 2008. I think you’ll get quicker and more-in-depth answers and explanations for your concerns from both patients and caregivers at marrowwforums.org

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