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-   -   aranesp for mds (http://forums.marrowforums.org/showthread.php?t=676)

Edbol Mon Jul 21, 2008 07:45 AM

aranesp for mds
 
My husband was started on Aranesp 300mcg injections once a week for 6 weeks, with not response. He had to get 4 units of blood to bring his hgb up from 7.2 to 8.1. His hem MD is going to ^ dose to 400mcg for this next round of injections. If this doesn't help he will ^ it to 500mcg injections. Is anyone else out there getting this tx and is it helping? What are your side effects? Constipation seems to be his. Thanks.

Suzanne Mon Jul 21, 2008 11:09 AM

I am really new at all this and trying to navigate this disease, but my mothers new Hemotologist told her that you should see results by the 3rd injection. She had 6 of them. By the time we switched Hem/Onc her hemoglobin was down to 6.2 and her old dr. still wanted to continue the injections hoping for a response. New doctor put her on the tlk-199 clinical trial. I could be wrong about this, however this is our experience with aranesp.

Birgitta-A Mon Jul 21, 2008 02:57 PM

Aranesp response
 
Hi Edbol,
You know patients with serum EPO that is more than 500 often don´t have a good repsonse at Aranesp and similar drugs. Serum EPO is made by the kidneys that try to push the bone marrow to make more red blood cells.

You have to ask the doctor for your husbands serum EPO - the doctor should have taken that test initially because otherwise he/she won´t know if your husband should have Aranesp and similar drugs.

You can look at page 15 in this handbook for MDS: http://tinyurl.com/5pjvsu
Kind regards
Birgitta-A
Serum EPO more than 800 at dx so I have not been treated with Aranesp or similar drugs

Edbol Mon Jul 21, 2008 03:44 PM

aranesp
 
Thanks for your responses Suzanne and Birgitta-A. My husbands EPO level was 232. I don't know if it makes any difference, but he had >50% ringed sideroblasts. What is TLK-199? He goes back to the Hem on the 28th for another CBC. Thanks, Brenda wife of edbol

Zoe's Life Mon Jul 21, 2008 09:17 PM

Edbol,

I had a response within a month of starting Aranesp. I had a major response. After a year and a half my hgb is back to the low 10's, but it bounces around like the price of gas (but inverted), and I hope I can still get back up to mid to high 10's.

Zoe

Birgitta-A Tue Jul 22, 2008 06:10 AM

Tlk 199
 
Hi Brenda,
Hopefully your husband will respond to a higher dose of Aranesp!

Here is a link where TLK 199 is mentioned at the end of the article:
http://www.medscape.com/viewarticle/565024

You can search TLK 199 in the search forum because several members have reported about that drug.

Kind regards
Birgitta-A

Edbol Tue Jul 22, 2008 03:43 PM

Thanks Birgitta-A for website, copied it to take to hem Brenda

Edbol Tue Jul 29, 2008 05:51 PM

post md visit
 
My husband went to hem md yesterday. Hbg 7.4, ferritin 1623 after 10 units of blood in 2 months. Started on 500mcg Aranesp X 6 weeks. Getting 2 more units of blood tomorrow and will be started on chelation. Will keep you posted. Brenda

Edbol Thu Aug 21, 2008 08:24 AM

update
 
Currently my husband has had 4 shots of 500mg Aranesp without response. Last hgb 6.5, wbc 1.7, rbc 1.9, platelets 220. Recieved 2 more units of blood. Starting on 2000mg Exjade tomorrow. Getting another cbc tomorrow to see if he needs more blood. I didn't know exjade was so pricey. My co-pay was $1688. He has had a total of 14 units of blood since June 1st. Will keep you posted. Brenda

Kidgee Mon Aug 25, 2008 03:03 PM

My Dad has been on Aranesp for several weeks now (will receive his 4th shot today). I am not sure of the mg dosage, but we just started seeing a new doctor (a hematologist at USC), and she said that she was going to give higher doses of Aranesp and more frequently. I am not sure whether or not the increases to his hemoglobin would indicate a response to Aranesp or not...here's the history: his hemoglobin was 7.9 in May, then he got his first transfusion (3 units) in late June. Since then, his hemoglobin numbers (in two week increments) were as follows: 9.2 (right after the transfusion), 8.9, 9.1, 7.9, 8.5, and 8.3 (today). He is receiving 2 more units of blood today and another shot of Aranesp. I am just not sure what to make of these numbers! And, maybe we'll know more as this new doctor pushes more Aranesp more frequently (he was only getting a shot every 4 to 3 weeks or so). Does anyone have any advice/comments? On another positive note his platelets, which have also been low, have steadily increased since July: 29, 32, 42, 46, 58. The doctor told us after doing an initial review of his bone marrow test of a week ago that "his bone marrow doesn't look that bad." However, she said that her gut feel is that he has MDS. (His oncologist already made the MDS call several weeks ago, but we are getting, in essence, a second opinion from this new doctor.) I guess we'll know more when we get the results of the FISH test.


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