New to site
 

Hello everyone,
I am new to the MarrowForums site and thought I would introduce myself.

My name is Marc and I am 46 yrs. old. My wife and I live in Aurora, IL. I was diagnosed with PNH and severe AA in feb. 2006. So far I have tried ATG (Horse), Procrit, steroids, etc... but have not seen any benefit. I average a blood and/or platelet transfusion every 10-14 days. My WBCs have not been a problem.

I am treating my PNH with Soliris and so far that has been helping so it is the AA that I am working on now. I do not have a sibling match for a BMT and the odds of success are a little too low for my liking right now to try one.

I am talking with my Hemo doc about a second round of AT (rabbit) or Campath or Zenapax. Has anyone tried these last two drugs yet?

I look forward to hearing from others with AA and wish everyone good health.

Marc

Welcome, Marc. It's tough enough dealing with one disease, and that much harder when you have two. I hope you'll benefit from hearing about other patients' experiences.

Could you tell us more about the Marc Rumaner Foundation?

Hi Neil,
Thank you for the reply.

The Marc Rumaner Foundation was started last year by a friend of mine to originally help raise money to offset some of my medical bills and to donate some of the money to research for bone marrow failure cures.

This year, instead of making it about me, we have made the foundation a federal non-profit organization whose mission is to help raise awareness of PNH/AA and to raise money so that we can offer grants/assistance to patients with PNH/AA who need to travel to see a doctor, need hotel accomodations, need help with doctor and prescription copays and to hopefully offer grants to research organizations involved in the search for a cure of these 2 diseases.

This year will be our first benefit as a non-profit and we hope to have 2-3 events next year. Grants will be offered based on how much we raise at this years event. The event will be held Friday, November 2nd, in Aurora, Il. Aurora is about 45 west of Chicago. All the information can be found at http://www.themrf.org.

I look forward to visiting this site often and getting to know people and hopefully learning more about AA. Please let me know if you have any questions about the foundation/benefit.

Marc

Marc - I too have AA & PNH; my AA diagnosis came in August 2005; PNH was this May. I was started on Soliris at the end of July; my LDH is also coming down well. Is that the only thing they test on you to see if the Soliris is working? The only downside of the Soliris is the cost. My insurance company is being billed $37,710 for each treatment; are you also seeing figures similar to this?

I relapsed in late June of this year and had a second round of ATG (horse in August 2005, rabbit this second time). I'm responding somewhat, but also need a stem cell transplant with no sibling match. I've not had either the Campath nor the Zenapax. I've never even heard of them; are they similar to ATG or are they daily medications?

Have you been told how close possible donor matches are for you? I have 4 people that match me 9 out of 10; that sounds pretty good to an accountant, but my doctor says that's too risky.

How do you feel day to day - pretty good or fatigued?

My best to you

Loretta B

Hi Loretta,
I don't know alot about Campath or Zenapax yet. My hemo doc is investigating. I think they are given as an injection vs. the 4 day infusion of ATG. I heard about them from Dr. Maciejewski at the Cleveland Clinic. He is one of the leading specialists in PNH. When I hear more I can post the info.

I am sorry to hear you will need a stem cell transplant. I also matched 9 of 10 and was told the risks were to great. I wish you nothing but luck, good doctors, a positive attitude and fantastic health.

My hospital bills the insurance company between $13,000-15,000 per Soliris. I don't know why yours is more than double that. It seems crazy to pay that kind of money for any drug. But I guess if is saving lives it is worth the price.

I am usually fatigued most days. I can take about two hours of activity like working before I need to rest and/or sleep. The SOliris has helped in the pain department though. I was going thru Hemolysis on a continuing basis, almost daily, with high fevers and night sweats. The fevers and night sweats have stopped as has most of the pain. I still have some and still am in Hemolysis. My LDH levels originally dropped after the first five treatments but then rose again. We aren't sure why and are not sure if we need to up the dose of Soliris. Again, we are looking into it.

How was the second round of ATG (rabbit)? I had major reactions to my first ATG treatment and went thru two weeks of serious serum sickness. Did you have any bad reactions to Horse and/or Rabbit? I'd prefer not to go thru that again, but if I have to I will.

Marc

Hi Mark,

It's Susan from the other site. Funny, the other day I posted questions here asking about Campath and Zenapax. Dr Mac also mentioneed Zenapax to me as a last resort option, IF I ever need it. I like to be in the know well ahead of time. I hate not knowing what my options are.. One person posted here about a terrible experience with Campath. I'd go to NIH/Dr Young for a consult and get 3 PNH specialist opinions & do literature searches before doing either. Zenapaz May be better, but just starting to check it out.

I'm here because my platelets and wbc have been trending steadily down for a year. I began with AA & it's coming back. Still good enough counts for time being. Will see if I can attend your event in November! Be sure to let the other site know you are only fundraising for others this year. They are more likely to get involved, that was not clear on the website when I last looked. You and your friends are amazing to help fund research. Thank you.

suz

Hi Susan,
Good to hear from you. Please let me know if you hear anything more regarding Campath or Zenapax and I will do the same as I get more info.

For the benefit, I have revised the site since the original benefit. It now talks about how the benefit is strictly to raise money for other PNH/AA people and research organizations in the mission statement and the description of the benefit. I also specified this on the post on the other site. Please let me know if I need to make it clearer or if it seems misleading. I certainly don't want people to think this is to raise money for me.

I hope that your counts start rebounding and that you are feeling well. I also hope you can make the benefit. Please let me know as we are not asking donations from PNH/AA patients who attend. We just want you to come out and have a great time.

Marc

Thanks Mark for the kind words. Actually I was away from the boards for a while so I'm just behind in the news. I hope your health improves too and will likely see you in Aurira!

suz

Hi Marc & Suz,

Just thought I'd jump in here and add our experience with Zenapax. We also consult with Dr. Maciejewski. Zenapax was SO EASY. Absolutely ZERO side effects. My son Grant (age 15) had 6 infusions of Zenapax without a single problem. That's the good news. The bad news is that it didn't help his counts at all.

He was dx with AA at age 7 in 1998. Horse ATG, cyclosporine, mycophenolate, Rabbit ATG, danazol, Zenapax, prograf... The Horse ATG and cyclosporine worked well for 7 years- no transfusions. Everything else is what we've done in the past 2 years that he has been transfusion dependent.

Now, he has some weird, rare kind of acne (can you believe it!!!) that docs are speculating may have been triggered by the androgenic effects of the many different immunosuppressants. So, since they weren't working anyhow, he is off all immunosuppressants now and has been for about a month. No change in counts. The weird acne symptoms are: fluctuating fevers, joint pain, weight loss and.... anemia!!!!!!!! The poor kid just can't get a break. It's called acne fulminans. Normally hits white males ages 13-16. Of course it does! JEEZE!
Treatment is antibiotics, prednisone and accutane. Right now, he is on doxycycline only. Accutane will start at half dose in a week or two.

Sort of got off track there, but just wanted to give you support toward trying zenapax. It does work for some and just wanted to assure you that it was easily tolerated.

Wendy/mom to Grant
dx 12/4/98

Wendy,
Thank you for the reply and info on Zenapax.

I am sorry to hear about Grants condition. It sounds like he's been thru the wringer. I hope that things start going his way and that he starts feeling better.

Please keep us updated.

Marc