[cthomas555]

Susie, I don’t know if it would help but I would contact the patient liaison at the MDS Foundation and maybe she could direct you to the right resource for assistance with this issue.

patientliaison@devmdsfound.org.php53-13.dfw1-2.websitetestlink.com

Phone within the US: 1-800-MDS-0839
Outside the US only: 1-609-298-6746
Fax: 1-609-298-0590

Chris

[cthomas555]

Alex, It does seem a small world. I see Dr. Alan Lichtin at CCF. I initially saw Dr. Andresen but I didn’t like him. It seem to me that he basically patted me on the head and sent me home to die.

I just read that CCF and UH are both a part of Case Comprehensive Cancer Center. They work hand in hand.

Gosh, I’m so sorry that you have this disease at such a young age. It really saddens me.

There were a couple of young people at:

http://www.marrowforums.org/index.html

before they changed their format. I would also post my profile there too.

Christine

[cthomas555]

Marlene, thanks for posting the complete warning. I lost the URL address but I sent the article to my hem/onc and primary immediately with the comment that I thought it was scary. They said they thought it was scary, too.

Chris

[cthomas555]

Saw my hem/onc this a.m. about the Exjade and chronic diarrhea. He reiterated that the Trisomy 8 generally have a poor prognosis and transform into leukemia rather soon and here I am still bumping around ten year later.

I asked if the RARS make it better. He says not it generally makes it worse.

I remember when this, my 3rd hem/onc, said this to me over 8 years ago that he gave me less than 2 years, I said to myself, HEY, you’re not going to tell me when I’m going to die!

Chris

[cthomas555]

Good recommendations. I have RA and several years ago my rheumatologist placed me on a low dose of Methotrexate for the RA that suppressed my bone marrow.

It is a good thing my hematologist was following my treatment and I was taken off before too much damage was done. Unfortunately I was also on Procrit at the time and tx free for 7 months but I had to return to blood transfusions and give up the Procrit after the Methotrexate experience.

Chris

[cthomas555]

I think this is the latest news on the epogen issue.

http://washingtontimes.com/business/20070531-103433-8731r.htm

[cthomas555]

I think what’s happening is that I take it for several weeks and my body makes the adjustment and the diarrhea goes away and then I skip a couple of days due to circumstances beyond my control, and when I start back it’s like starting new, thus the diarrhea returns.

I notice that in May they changed my instructions for dosage without any explanation. Half in the morning and half in the afternoon.

Chris

[cthomas555]

I read it was not recommended to reduce the ferritin level lower that 900 on Exjade?

I have an appointment to go in and talk with my hemmatologist next Friday to discuss all my concerns about Exjade and iron overload. He has spent months evading me.

I’m experiencing more and more tachycardia and a general malaise. I believe the persistent diarrhea is caused by the Exjade. I continue to lose weight. Grrrr!

Chris

[cthomas555]

Marrow cellularity of 25% or less) at presentation.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=3409176&dopt=Abstract

This is a 1988 abstract. Maybe you can Google something more recent.

Hypoplastic MDS appears to be a distinct clinicopathologic entity characterized by marrow hypoplasia, macrocytosis, severe leucopenia and thrombocytopenia, low incidence of progression to acute leukemia, and unresponsiveness to conventional therapy.

Chris

[cthomas555]

Hi Leonard,

After my procrit quit working and I returned to tx I tried Aranesp which did not work. So, my H took me off of it over his concerns about blood clots and red cell aplasia due to the combination of the tx and procrit/aranesp.

Chris(tine)

[cthomas555]

Denise, I have not heard of HBED being used in the USA but maybe someone else has. The last study I found for HBED on PubMed was 2004.

I share your concern about the liver damage from chelation with Exjade.

I’m not sure if they can tease out how much of the increased ferritin pertains to the iron overload and how much to the inflammatory diseases. I will ask on my next appointment with the hem/onc, not sure I’ll get a reply.

What so you think is making your numbers bounce around like that?

I’m sorry I can’t be more helpful.

Chris

[cthomas555]

Denise, I would like to suggest that you phone the pharmacist at exjade and see if he can offer you any information, if not your hematologist would probably be the only one to answer that question for you because it seems to me it would be determined on an individual basis.

My best guess is that you have two options…starting exjade at a lower dose and see what happens or going back on Desferal.

I have inflammatory diseases that make my ferritin quite high as well as the tx.

Chris

[cthomas555]

Caroline says:

“If you see a posting by a particular person who you don’t like…DON’T read it !! Simple.”

It seems to me that you don’t follow your own advice.

I was told about all her “supporters” being summoned to come over here to her defense. Hi Jim Bob!

I said what I have to say and you have your right to say what you have to say as well.

Chris said,

“God help your retarded sister-in-law who had been placed in your sole care, along with your M-I-L’s house and all her belongings.”

WHAT in God’s Name does THAT have to do with Leukemia ?!?!?!?

Hey, Patti posted it in a public discussion in regards to her MIL and her leukemia so it was open to opinion. I gave one.

If you want to keep this controversy going, continue to keep the thread going. If you find it so offensive why don’t you just move on instead of adding fuel to the controversy.

[cthomas555]

Quote:

Originally posted by cthomas555:
Janeann, The name of the gentlemen I referred to earlier was Bob Carroll who wore the pump 24/7.

posted July 09, 2006 03:28 PM

Bob Carroll the president of the Myelodysplastic/Aplastic Anemia International Foundation died last month. He had MDS for at least 18 years and was on transfusions and desferal almost all of that time. He even traveled to Europe at least once with the MDS and while on the desferal. Professionally, he was an educator. I understand from other patients who met him at the annual conferences that he was a really great guy.

http://www.aplastic.org/aplastic/news/news.php?id=99

In his tribute to Bob, one gentlemen says…
“Bob and I would talk about different treatments and options for him and for myself. . . He helped me adjust to the dreaded Desferal pump, the expert he was since he had already been using it for several years.”

http://www.aplastic.org/aplastic/information__hope/stories_of_inspirati/bob_carroll.php

[cthomas555]

The blast listed on the BMB is from the bone marrow which is hopefully less than 5%.

The blast listed on the CBC is from the peripheral blood.

To my knowledge, the hematologist determines which numbers are included on the CBC for the patient’s information, at least mine does.

You can also ask if any blast were seen in the peripheral blood.

Er, would I appear more knowledgeable if I list the number of cancer clinics, hospitals, hematologist, oncologist, labs and pathologist I’ve seen, been to or spoken with since 1996? I didn’t think so.

[Author]

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