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-   -   Lytoxan chemotherapy treatment desperately sought (http://forums.marrowforums.org/showthread.php?t=723)

RyanD Wed Aug 13, 2008 02:04 PM

Lytoxan chemotherapy treatment desperately sought
 
Hello everyone. My girlfriend is a 31 year old employee with a Washington State hospital (insured) and mother of 2 young boys from her marriage. She was recently diagnosed with this illness and underwent treatment using the horse bone marrow serum. It is now looking like the treatment did not work so we're frantically trying to figure out where she may be able to receive the Lytoxan chemotherapy treatment. Here in Washington State we've learned that they have a more conservative system and she is deemed too old to receive the treatment. Does anyone know where she could receive this treatment and not be stopped by her supposedly old age. We know treatment can be received in Maryland but preferrably we'd like to seek this treatment in the Northwest as her family is here. In the end though we also realise that beggers can't be choosers. Any information would be so much appreciated. Thank you!

Ruth Cuadra Wed Aug 13, 2008 02:46 PM

Hi, RyanD.

I assume that your girlfriend is being treated for aplastic anemia since you mentioned that she received "horse serum", which is called ATG (anti-thymocyte globulin). This is an immunosuppressive treatment that is used to try to give the patient's bone marrow time to recover on its own. Although it can be very hard to wait, it can take 6 months or more to know if the patient is responding to the treatment. How long has it been since your girlfriend had her ATG treatment?

The chemotherapy you refer to called "cytoxan". It is sometimes used in high doses instead of a bone marrow transplant for patients who do not recover after ATG. Two of the best centers in the world for dealing with bone marrow failure diseases like aplastic anemia are right in your backyard: Fred Hutchinson Cancer Research Center and Seattle Cancer Care Alliance. You should contact them immediately to get a second opinion about your girlfriend's condition and treatment options.

I would be extremely suspiscious of any doctor who tells you that a 31-year-old is too old to be treated. She is absolutely not too old.

If you haven't already done so, please contact the Aplastic Anemia & MDS International Foundation to get their basic information package.

Let us know what questions you have. We are here to help.

Regards,
Ruth Cuadra

Marlene Wed Aug 13, 2008 03:41 PM

How long ago was her treatment with ATG and what are her blood counts? It can take up to a year before you see a response.

There's not really an age limit for High Dose Cytoxan. I would highly recommend that if you are considering High Dose Cytoxan, to contact Dr. Robert Brodsky at Johns Hopkins. High Dose Cytoxan is not ususally done outside of Baltimore without some guidance from Hopkins. I really encourge you to speak with Dr. Brodsky directly.

Hy Cy is not as effective if a patient has gone through ATG and failed. It's best as the first line of treatment.

You should also be considering a second round of ATG and/or bone marrow transplants.

At 31, your girlfriend is not too old for any of the SAA treatments.

At a minimum, go to one of the Center's of Excellence Ruth posted for second opinion.

ccartbmw Thu Aug 14, 2008 12:05 AM

Hi,
I just had my second round of ATG, I am also on 250mg cyclosporine. I had the treatment April 1, my levels are now at 11.1 hm and platlets are at 111 thousand. Just give it time , it will work. I can not believe the second time around and going to a hospital that knows how to do the treatment correctly. I had such a great experience at UCLA with Dr Paquette treating me. I am feeling great this time around. Do not give up it takes time.
Thanks for listening
Carol

ccartbmw Thu Aug 14, 2008 12:08 AM

Hi,
I forgot to mention they use the cyclosporine along with the ATG treatment.


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