ATG Treatment

[covergirl]

Will begin 5day ATG infusion on Monday. Will certainly update you upon completion of this treatment.

If anyone has any experience/info on ATG, please let me know via reply or PM.

Thanks

[DonUK]

Best of luck covergirl.

[sarah]

Hope all goes well.
Sarah

[gemloyear]

wishing you the best with your treatment
Ellie

[Kathryn]

Thinking of you and hoping your treatment goes well.

Kathryn

[covergirl]

Greetings to All
First I apologize for taking so long to respond. This is my first day on the computer since sometime in June.

My ATG treatment did not go well at all. On the evenng of day 2, I started getting congested. I was retaining fluid in my lungs. Day 3 & 4 was spent clearing that up and on Day 5 I was released. The following week I got a severe migraine which made me violently ill. I am still suffering from some vision impairment which may/maynot be from this migraine. Percocet taken to relieve pain, made me disoriented and weak. Also was being weaned off of pretnozone(sp) which has caused me to have high blood sugar readings which are due to pretenozone or just set off adult onset diabetes(which could be hereditary).

Will meet with doctors on Wednesday to discuss next steps.

Taking one day at a time,
Cheryl

[Terri]

Hope things start getting better and the drs have some good words on Wed.
God Bless

[frank]

sorry to hear all these.

it seems no clear road for you, too. continue hope you getting better first. my vidaza treatment have to delay until my doctor figure out the reason on what is wrong, too.

hope things turn over someday for you…

Frank

[gemloyear]

Hi Cheryl, I’m sorry to hear that things aren’t going well for you. I hope your D0C comes up with something that will help. It seems that the various meds used for mds cause a lot of respiratory trouble. Even the meds given to my husband for rheumatoid arthritis cause respiratory infections . I guess it’s all part of immune disease. Praying for the best for you.
Ellie

[Neil]

Hi Cheryl,
What you went thru is par for the course. Allergic reactions to it are common.
Hope it helps and the glucose levels go down.
Have your counts improved at all?
Had a friend go thru it also. He was back to “normal” within a month. It did not improve his counts. Still on tx every other week and desferral 5 days a week.
Neil

[Kathryn]

Cheryl, one day at a time is a good way to take it. I have been thinking about you and am sorry that you have been having a difficult time. I hope that the doctor can come up w/ a plan that will agree w/ your body; I know how hard medicines can be on one’s chemistry.

Know you are in my prayers and I am wishing for better days for you.

Take care,

Kathryn

[covergirl]

Thanks to everyone for their kind thoughts. Had to take another hiatus, but I am back for the time being. Returned to work today and am a little overwhelmed to say the least.

My doctors at the BMTUnit at MCV decided that I am better off continuing my blood transfusion therapy which is now every 2-3 weeks rather than incur risk of BMT. This is until there are signs my MDS is changing. I will take BMB soon to determine if there is any change. Really don’t know what to say about that. I do know mentally, after visiting the BMTUnit daily after failed ATG therapy, I was/am not mentally ready to do BMT – but will get ready if I have to if that makes any sense. Based on regular visit last week, I will probably need a tx next week.

Dealing with diagnosis of diabetes has been a double blow. This did not go away as I had hoped.

Really apppreciate all of your good thoughts. I have nothing but high praise for this forum. I will try to catch up on all the posts soon.

I continue to take one day at a time,
–cheryl

[Monica]

Hello Cheryl,

My name is Monica, I just suscribe today to this page. I am from Mexico. I found this page because I was looking for a second opinion of this MDS syndrome, my mother got it and the doctors here recommended her the ATG therapy. I’m not that sure to try it, how dangerous can be for her, but transfusions are getting her tired … but still we want to win the leukemia race.

Have you ever heard about Revlimid? I found this as an alternative that seems to have worked in some patients that have been studied, but still is not on sale.

Home you can feel better every day. Even though I am not the one who has this illness, I am kind of living it with my mother and it is so frustrating I can’t do anything for her but pray.

My prayers are now for you also.

Take care, Mónica

[John in GR]

Hi Cheryl,

The restraint your doctors are showing is commendable. Many have had nasty reactions to ATG. Revlimid seems promising, especially for those w the 5q- chromosomal defect. To my knowledge, Revlimid users have not experienced the high incidence of nasty side effects associated w ATG.

John

[Neil]

Believe you will find most docs feel that ATG is no longer an effective treatment for MDS. It has been successful in treating Aplastic Anemia and a very few MDS patients with hypoplastic marrow.
The procedure takes about a month —in a hospital. It is a serum derived from horses and is very toxic! Reactions are severe, to the point patients frequently lose consciousness for a day or two at the peak of the reaction. There is another serum made from rabbits (Think it is ALG), that is not as toxic, but no more effective.
If you wish to learn more go to nih.gov and you will find considerable info. They tried it on a number of patients a few years ago. If you want to contact a patient who tried it I can put you in touch with him.
Neil

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