serum sickness

[Lynn del]

I just had rabbit ATG and I have severe serum sickness. My legs are numb and all my joints hurt and I get muscle spasms. I also have been running fevers. After the treatment all my counts bottomed out. So I have been getting alot of transfusions. My platelets were 4 before the transfusion yesterday. My red cells are holding now and the white cell were .5 and now they are 4.2. I'm also very weak and can't take the pain. Has anyone had serum sickness for over 2 weeks and counting? Any help would be great !! Lynn

[ccartbmw]

Hi Lynne,
Yes, I got serem sicknes, it lasted about 2 months and I got shingles for about 3.5 months.It was the most painful thing. But I finally got over everything, it was 1 year ago on April 1st that I had my treatment. I cannot believe how great I feel. I am now in remission. I have been training for the breast care walk in September. My goal is to walk 39 miles. I am up to 6 miles and working out 3 times a week, yoga once a week and water arobeics twice a week. My levels are all up. I was so scared to have the ATG treatment again after having it in Jan.2005. I spent 5 long months in the hospital the first time. The second time it went alot better 5 days. But alot easier than the first. It was all worth it. Smile and never give up. Try and keep as postive as you can.

Thanks for listening
Carol
Dr Paquette is the Best!!!!!

[michelle_lapuz]

I hope you feel better....serum sickness is the worst - I couldn't move and had to be admitted again for IV steroid treatment followed by high dose steroids for a month and a half. The ATG is 'supposed' to be completely out of your system at about a month - are you close? If not, I would definitely talk to your doctor about it....good luck!!

Michelle

[Lynn del]

Thanks Michelle and Carol, my last infusion of rabbit-ATG was March 22, so it's not a month yet. When I had the horse ATG 10 years ago, I had joint pain for 2 years. I don't think this one will be as bad because I didn't get the bad rash all over, and I found out later that I was allergic to horse before because they use that in tetnaus shots and I got a high fever and rash with the shot. I'm trying not to take the steriods because I get really shakey and my hearts pounds and my pulse races with the steriods. They only problem with this treatment is that my counts keep bottoming out and I need alot of transfusions. Is this normal? Thank you for all your help, Lynn

[ccartbmw]

Hi Again,
I had transfusions for around 2 or 3 weeks. But than I did not need them any more. I have not had any since that time a year ago.

[Lynn del]

I went to Sloan-Kettering to see Dr Castro for a follow up. I'm in the middle of severe serum sickness. All he wanted was for me to sign up for a bone marrow transplant. The cost to me would be $20,000.00. I just had Rabbit ATG and he didn't even care to see if the treatment worked yet. When I didn't sign the papers and said I have to think about it, I don't have $20,000.00, he got really mad at me. This is not how a doctor should treat a patient. He should have empathy and caring about what the patient is going through at the moment.
Now I have nausea and shaking, I can hardly stand alone. I have to get a platelet transfusion, they are down to 6.
Thanks for the support, Lynn

[rschem]

I had ATG (horse) serum aug. 08. Iwas luckey to have almost no side efects to the serum. I had a bad reaction to one of the platlet tx. I had the chills and shakes.I am now partially recovered and don"t need tx"s My hg is @ 100 platlets 50 ,wt.3.5,nf 4. Hope you are feeling better soon and get transfusion free.Good luck.
Robert

[Hawaii Bill]

Hi Lynn,
I had horse ATG back in Dec 2006, but no serum sickness. I think that was because of the Prednisone they gave me (although maybe some patients still have serum sickness despite it, I don't know).

My hemotologist told me a few days after the last ATG that my prognosis was good because my white blood cells were responding.

Perhaps your doctor is basing his suggestion of the BMT on some early indicators of your response to the ATG treatment? Maybe he thinks that the second round will not be helpful?

I had 5 days of ATG, followed by 21 days of confinement in the hospital, getting transfusions, mostly platelets because the ATG tends to wipe them out, as I understood it. Once I got out, I did not need platelet transfusions again until my relapse 9 months later.

My doctor has been mad at me a couple of times. They're human. But it sure was not very nice...

You know the difference between God and doctors, right?
God knows He's not a doctor.

Hold fast!

[Lisa V]

I'm trying not to take the steriods because I get really shakey and my hearts pounds and my pulse races with the steriods.

That sounds pretty unpleasant, Lynn, but is it worse than the serum sickness? As far as I know, prednisone is the best treatment for serum sickness, along with Tylenol or some other non-NSAID pain reliever. Unfortunately you may have to choose between the lesser of two evils. I sure hope it gets better soon!

Some people respond to ATG faster than others, but it's certainly not unusual for your counts to get worse before they get better, and to still be needing transfusions for weeks or months afterwards. My husband took 10 weeks to become transfusion-independant after his first ATG, but it only took him 5 weeks to get to that point after his second round.

I don't know what's going on with your doctor, but he sounds out of line to me. Pushing you to transplant before you've had time to see if the ATG is going to work is bad enough, but getting mad because you can't afford it??? What are you supposed to do? A BMT is a big deal! It's even more bizarre because that's practically the opposite of the experience we had. In order to find out if Ken had a sibling match, we were required to meet with a social worker and submit a financial plan proving to them that a transplant wouldn't bankrupt us. The thing is, it very well might, and we had no intention of going to transplant at that point anyway, since he's been doing fairly well on IST, but we just wanted to know if he had a match, just in case. We were told, however, that unless we had a viable plan in place for the whole deal, they wouldn't even do the sibling testing! Naturally we told them what they wanted to hear just so they'd do the tests, but we definitely got the feeling that it was all about the $$$, not about what was best for him.

[Lynn del]

Hi Lisa:

I started to take prednisone for the serum sickness, I took 20 mg. but I need to take more.
The doctor was really out of line. It took alot for me to go to NYC and to be around all those people when my counts are so low, and I was in so much pain. He just wanted me to sign my life away without any financial help. I want to see if this rabbit ATG works.
Last year I went to Yale in CT. and they cross-matched my sister and brother free, but they weren't a match to me. I've been going to my local doctor and have been getting alot of transfusions and neuprogen shots. I hope the ATG will soon kick in. When I had the horse ATG I had 1 platelet transfusion and in a few weeks my count came up, the red were 13, the whte 6, but the platelets only came up to 40, it lasted for 18 months then I needed transfusions again, but only once a year.
What is IST? Thanks, Lynn

[Lynn del]

I had ATG (horse) serum aug. 08. Iwas luckey to have almost no side efects to the serum. I had a bad reaction to one of the platlet tx. I had the chills and shakes.I am now partially recovered and don"t need tx"s My hg is @ 100 platlets 50 ,wt.3.5,nf 4. Hope you are feeling better soon and get transfusion free.Good luck.
Robert

Hi Robert:
When I get platelets I also get chills and shakes, they call it rigors, and I found out that demerol stops them. If they give it to you right away a 12.5 dose works. Thanks, Lynn

[Lynn del]

Hi Lynn,
I had horse ATG back in Dec 2006, but no serum sickness. I think that was because of the Prednisone they gave me (although maybe some patients still have serum sickness despite it, I don't know).

My hemotologist told me a few days after the last ATG that my prognosis was good because my white blood cells were responding.

Perhaps your doctor is basing his suggestion of the BMT on some early indicators of your response to the ATG treatment? Maybe he thinks that the second round will not be helpful?

I had 5 days of ATG, followed by 21 days of confinement in the hospital, getting transfusions, mostly platelets because the ATG tends to wipe them out, as I understood it. Once I got out, I did not need platelet transfusions again until my relapse 9 months later.

My doctor has been mad at me a couple of times. They're human. But it sure was not very nice...

You know the difference between God and doctors, right?
God knows He's not a doctor.

Hold fast!

Hi Bill:
Thanks for your response. What are you doing now, since you relapsed? When I had the horse ATG it was 4 days and it took a few weeks to respond but I didn't need transfusions. It lasted 18 months then I needed red cell transfusions but only once a year. This time the rabbit ATG was 5 days then I went home the next day. I had the same doctor last time and he knew that it took a few weeks for me to respond. Last week I had transfusions almost everyday. I started to take the prednisone because my joints are so painful and my legs and arms are numb. I have to go tomorrow to my local oncologist to check my counts. I hope they stabilized. I have to put myself in God's hands. Thanks, Lynn

[Hawaii Bill]

Hi,

My doctor and I were thinking it was time for me to go thru a second ATG treatment early last year. I decided that I wanted to get into a clinical trial if I could, and found a trial using Sirolimus instead of ATG. I went to UCLA, one of the trial sites, and was evaluated by Dr Paquette. He reviewed my medical records for about 30 minutes with me, and suggested trying a "therapeutic" dose of Cyclosporine (CsA) for a few months to see if it would have a response.

This made perfect sense, because my disease was still moderate AA (it was VSAA before my first ATG treatment) and I had the "luxury" of time to see if it worked, and I knew from all of the reading I did that CsA alone can be an effective treatment (it is just better when used with ATG).

So I started on CsA 200mg twice a day in June 2008. I had a red blood tx in July. By October, my counts stopped declining, and now they are rising very slowly. Last week my hgb was 11.3, white was 4.4, platelets 40, and ANC 2.0.

THANKS, DR PAQUETTE!

The thing that worries me now is what will happen when we start to taper. But at least I avoided another month in the hospital and the risks associated with ATG and Prednisone. CsA is no angel either, but I'm blessed that I can tolerate it. I lost a lot of hearing in one of my ears in October, and my hemo thinks it could have been the CsA. Paquette disagrees. Who knows? I am in my late 50s, and hearing loss happens.

[Lisa V]

What is IST? Thanks, Lynn

IST = Immune Suppressant Therapy, i.e. ATG & cyclosporine.

Ken's had 2 rounds of ATG. The first time his Plts never got above about 30k on their own, and then he relapsed during the cyclo taper. For that reason (plus the fact that he has a trisomy 8 mutation), we haven't even attempted to taper him off the CsA this time, even though it's been over 3 years. He's still taking 175 mg/day (which is a concern), but the good news is that he has continued to show gradual improvement, with his Plts now over 115k and Hgb in normal range. It's been very slow progress, but we'll take it!

[Lynn del]

Hi everyone:

It's been 1 month since the rabbit ATG and my counts are not responding. I have to have transfusions all the time and neuprogen shots. I started to take 20 mg. of prednisone for the joint pains and it takes the edge off but now I have yeast infections and thrush. I feel weaker. I'm worst then before the tx. before I was having 1 red cell transfusion a month, now I'm at the hospital 3 times a week for transfusions and neuprogen shots. They didn't give me cyclosporin. Last time I had the horse ATG my counts responded slowly but I didn't need transfusions, the serum sickness was worse with the horse ATG. Now I'm sick with congestion and a head cold and very weak. Has anyone had numbness down their legs and arms, if so, how long does it last, it's so painful? Thanks, Lynn

[Hawaii Bill]

Hi everyone:

It's been 1 month since the rabbit ATG and my counts are not responding. I have to have transfusions all the time and neuprogen shots. I started to take 20 mg. of prednisone for the joint pains and it takes the edge off but now I have yeast infections and thrush. I feel weaker. I'm worst then before the tx. before I was having 1 red cell transfusion a month, now I'm at the hospital 3 times a week for transfusions and neuprogen shots. They didn't give me cyclosporin. Last time I had the horse ATG my counts responded slowly but I didn't need transfusions, the serum sickness was worse with the horse ATG. Now I'm sick with congestion and a head cold and very weak. Has anyone had numbness down their legs and arms, if so, how long does it last, it's so painful? Thanks, Lynn

Hi Lynn,
My first treatment was with ATG, Cyclosporine, Prednisone, and Neupogen. I was in the hospital for 21 days after the last bottle of ATG. For that time and for about a month after I got out, I had to take a lozenge 5 times a day and let it dissolve in my mouth. That was to prevent thrush, which is merely a sign that your immune system is very compromised. The lozenges were nothing more than an oral form of the kind of meds they give for vaginal yeast infections. They also wanted me to rinse my mouth with a salt-water prep as much as possible.

Before I went in, I was getting a unit of red and platelets once a week. That continued for the 3 weeks that I was in the hospital. The platelets were worse until I was discharged. After that, I only had one platelet tx until my relapsed counts required it nine months later. I still needed red blood a couple of times after I was discharged, but by 3 months out I had my last one for many months.

When I was in the hospital, they drew blood for a CBC every morning and gave me the results. It was VERY depressing to see my counts decline every day. Things looked bad. But they finally slowed their decline and started to stabilize at a low count.

To be frank, I wonder what your docs are up to. No Cyclosporin? No Prednisone (at first)? Well, I guess they have their reasons; after all, Prednisone comes with its own set of possible problems.

Bill

[Lynn del]

Hi Bill:
When I went to Dr Castro he told me to take prednisone, but my heart races on it and I get very hyper. I take 20 mg and it helps with the pain but I have to take adavan with it. Doesn't prednisone cause yeast, and also I'm on antibiotics again and I know that causes yeast. They gave me the losenger also and I eat yogurt everyday. I also had diflucan and the yeast seems to go away then it comes back. He didn't give me cyclosporine because I had an allergic reaction on it after the horse ATG. But I told him to let me try it since it's been 10 years, but he didn't. So since I'm having the yeast problem, that means that my immune system is compromised
so my blood counts should start to come up? It's over a month and I feel so weak, I'm doing more than when I first came home, but there are days I can't function. Now I'm getting the sweats and I can't breath when it happens, I had this for a week after the horse ATG. Maybe the ATG is trying leave my system. Thanks for all your help. Lynn

[Hawaii Bill]

Hi Bill:
When I went to Dr Castro he told me to take prednisone, but my heart races on it and I get very hyper. I take 20 mg and it helps with the pain but I have to take adavan with it. Doesn't prednisone cause yeast, and also I'm on antibiotics again and I know that causes yeast. They gave me the losenger also and I eat yogurt everyday. I also had diflucan and the yeast seems to go away then it comes back. He didn't give me cyclosporine because I had an allergic reaction on it after the horse ATG. But I told him to let me try it since it's been 10 years, but he didn't. So since I'm having the yeast problem, that means that my immune system is compromised
so my blood counts should start to come up? It's over a month and I feel so weak, I'm doing more than when I first came home, but there are days I can't function. Now I'm getting the sweats and I can't breath when it happens, I had this for a week after the horse ATG. Maybe the ATG is trying leave my system. Thanks for all your help. Lynn

Hi Lynn,
Wow, your situation really makes me feel thankful that I tolerated all those meds as well as I did. Going through ATG without enough Prednisone to counteract it's effects is tough! And rabbit ATG to boot.

My guess (and it is just that), is that since you only had the ATG, and not the CsA with it, as is the norm, that you might take longer for a response. In my case, the second treatment has been CsA alone, and it took 3 months before my counts stopped declining, and another 3 months for them to slowly start inching up.

Given your problems with the usual meds, you might want to consider a clinical trial that uses entirely different ones. There is one with a drug called Campath, and it does not use ATG or CsA. And then there is always Dr Brodsky's alternative treatment.

I sympathize with all you are going through. The 90 days after the ATG treatment are hard. Think of it: you had rabbit antibodies flowing through your system, wiping out lots of different cells and wreaking good havoc as well as bad, and you did it without much help from Prednisone. You are one tough customer!!! Hang in there!

[JEZ]

Hi Bill,

I have AA and am in my 50s. I developed serum sickness 2 days after discharge in Jan 2007 after receiving horse serum. I was readmitted to the hospital and received massive IV infusions of steroids which got rid of the serum sickness within a few days but necessitated a longer and higher dose of prednisone at home. It also delayed starting cyclosporine. I started cyclosporine in Feb. and was fully weaned off the prednisone in March. I did not initially respond and felt very sick and discouraged. My doctor switched me to a brand name (NEORAL) for the cyclosporine and I finally responded at the end of April 2007. My counts have steadily climbed. By November 2008 (1 1/2 years later) I got my first normal hematology lab! The side effects of cyclosporine are not so good though and I now have to deal with the possibility that it is toxic to my kidneys... but I soldier on. Hope this helps you see the big picture a bit.... stay the course!

JEZ

[Hawaii Bill]

Aloha,
I also take Neoral. My doc and I think it is the best of the 3 choices for me. Sandimmune seemed too weak, and Gengraf's value was unclear.

The CsA alone this second time around seems to be working, and Dr Paquette wants to keep me on this dose until I have normal counts, absent complications. So far, so good: my whites and ANC are normal or very close to it, my hgb is 11.3, and my platelets are at 40k. I haven't needed PRBC since last July, and my ferritin is now at a safe level, and still declining. I feel very grateful.

I was on a big dosage of Prednisone before I was even treated with ATG. The doctor was hoping that it alone would do some good. It might have, but my marrow was too hypocellular to wait.

This board and AAMDS are fantastic help!!

[Hopeful]

Hi Hawaii Bill,

Can you clarify what you meant when you said Gengraf's value is unclear?

I am currently taking Gengraf but have low trough level readings for the amount that I am taking. I take 6 mg/kg/day (150 bid), but my trough readings are only about 120. My counts have been falling so my doctors want to get my trough up over 200 to see if that will help. To do this, they want me to increase to 200 bid (8 mg/kg/day). I'm guessing that still won't be enough!

I'd appreciate any insight that you have on the types of Cyclosporine and why Gengraf isn't recommended.

thanks!

Hopeful

[Hawaii Bill]

Hi Hopeful,

I hope I did not mislead you. In June 2007, six months after my 1st treatment, the pharmacy began filling my CsA scrip with Gengraf. I assumed at the time that it as was just as good, and the smell of the Neoral I had been taking was something I could easily do without.

But within a month, my counts started declining. Then the sandimmune was used instead by the pharmacy. All in all, it was too fast a taper in the first place, and the alternative meds probably did not help the situation.

I really can't say if the Gengraf was effective or not. But the doctor has said no substitutes for Neoral since then. I read that SandImmune is not bio-equivalent to the other CsA generics, but I really can't say much more than that.

HTH

I weigh around 240, and I have been on 200mg bid of Neoral since Jun 2008.

I think the trough level is really important. Maybe you should ask about Neoral.

[Hopeful]

Thanks for the insight, Bill. Does anyone know if Gengraf is the bioequivalent of Neoral? I way about 110 lbs. So taking 200+mg bid will be huge! It's especially concerning in light of the kidney failure issues that have been recently posted.

[JEZ]

It is my understanding that the brand name NEORAL and other cyclosporines are not the bioequivalent. I was told when first starting to take cyclosporine to be carefully monitored when switching brands and source of manufacturer because they varied with the manufacturer. I was quite ill and my bone marrow did not respond on the first generic cyclosporine I took. It wasn't until I took the brand name drug (NEORAL) that my bone marrow started working. I am 206 lbs. and take 100 mg BID. Your doctor can adjust you dosage. Neoral comes in 25 mg capsules as well... at least that is what my insurance plan covers. I know that no matter what you take, you have to take cyclosporine twice a day as it is not time released.

[helen c.]

my husband has ben asked entering a clinical trial using Telintra- TK199 tablets has anyone been in this trial (how was it) did it help. he has MDS intermediate high risk

[Hawaii Bill]

Hi Hopeful,

200mg bid sure sounds high for your weight, since my dosage is the same and I'm 240 lbs; but Dr Paquette at UCLA told me there is no established "therapeutic" dose of CsA for AA. I think what they try to do is give enough to you to keep it at a constant level; there is something called a "trough" level that I think is a threshold for transplant patients, who also depend on CsA. At any rate, my guess is that they will adjust your level to keep it as high as it needs to be, theoretically.

When I was being treated in the hospital in Dec 2006, I was on 300mg bid. At that level, it caused a lot of reflux, and I could not wait to lose that side effect. At 200mg, I can even take it without food, but I try to avoid that.

At this point, I would swear by Neoral. It seems to be the best for me.

[Lynn del]

Jez:

I had rabbit ATG in March, 4 days later the serum sickness started. I took prednisone 20 mg. and the pain wasn't as bad. They didn't put my on cyclosporine because last time I had horse ATG I had a reaction to it. Anyway, I have to go to the doctor almost everyday because my counts keep falling. I get neuprogen shots and transfusions. I still have serum sickness, but I can't tolerate more prednisone. When I had the horse ATG I didn't need transfusions and my counts started to respond. Did you need alot of transfusions after your ATG? My ferritin level is really high. If you did need transfusions and newprogen shots - how long before your counts responded? Thanks, Lynn

[JEZ]

Jez:

I had rabbit ATG in March, 4 days later the serum sickness started. I took prednisone 20 mg. and the pain wasn't as bad. They didn't put my on cyclosporine because last time I had horse ATG I had a reaction to it. Anyway, I have to go to the doctor almost everyday because my counts keep falling. I get neuprogen shots and transfusions. I still have serum sickness, but I can't tolerate more prednisone. When I had the horse ATG I didn't need transfusions and my counts started to respond. Did you need alot of transfusions after your ATG? My ferritin level is really high. If you did need transfusions and newprogen shots - how long before your counts responded? Thanks, Lynn

Lynn,

I had ATG the first week of January 2007. I stayed in the hospital 6 days on IV steroids. I was sent home on 150 mg. of prednisone with the plan that I would gradually wean down the dose each week. Within 2 days of discharge, I developed serum sickness. I was readmitted and stayed about 10 days. I was given IV steroids and the serum sickness was resolved but I had to go home on 200 mg of prednisone. I won't go into details about the reaction to all that prednisone but I was miserable and could not stay alone or drive. I too wondered if it was all worth it because I felt worse after the treatment. I started cyclosporine generic (I forget the name but I think it started with an i) in mid February and did not respond.... needed weekly transfusions of platelets and periodic transfusions of RBC for the next 2 months. At one point my platlets were only 3000. My doctor switched me to Neoral (a brand name drug) in April and I finally started responding. I had my last transfusion in April of 2007. The platlets and all my counts gradually climbed over the next 1.5 years until November 2008 when I had my first normal count or 166,000 platelets and normal RBC, WBC, Hg, and HCT, etc.

[Lynn del]

Hi everyone:

I had my ferritin level checked and it is really dangerously high. The doctor gave me Exjade. The rx is 500mg. 3 times a day. I took 1 500 mg. and I got nausea, dizzy and cramping. Then my whole body started to shake and I became very itchy all over. I had to take 3 showers, benadryl and put benadryl cream all over, then another shower. I am very sensitive to any med. They said I was having an allergic reaction to the med. I've been having so many transfusions lately, so the ferritin level is now 5090. I know I have to take it so it could pull the iron away from my heart and liver, but it is so dangerous, especially with people with bone marrow failure. They just put a new warning on the label. So the med. can cause death but not taking it will cause death. This is a "catch 22".
Has anyone else taken exjade? And what where the results?
Any help would great !! Still in serum sickness and alot of pain, Lynn

[Lynn del]

Jez:

I felt the same way after the ATG. I was worse than when I went in. My counts are still not responding, and I couldn't be alone when I came home or drive. The serum sickness is bad, the pain is unbearable. Down my legs and arms the skin is numb, and if you touch it it is very painful, then, of course, there is the shooting pains. And then there is weakness. I haven't heard of anyone else getting the numbness/pain. I had it last time with the horse ATG, but not as bad. I think it helps if you have a good support system but I don't have that with my family.
Now I have to take exjade, and I'm having an allergic reaction to it.
How is everything now, are all your count normal? Hope all is well with you and God Bless, Lynn

[Marlene]

Have you tried Desferral yet? It's safer than Exjade but it's not oral so it's more involved. Your first dose should be administered in the doctors office. It should be a lower dose and infused over long period of time.

Many side effects from Exjade are dose related. Many docs stop treatment with Exjade until the side effects go away and then restart at lower dose. Maybe 250mg/day to start with. For many, after they restart, they no longer have the hives/itching.

John never got to a full dose of Exjade and eventually stopped it because his Kidney function test were going up.

[Lynn del]

I still have serum sickness from the rabbit ATG. But now my platelets are 2 and ANC 800. This is a shock since they were stable and going up for the last 2 weeks. I since started exjade and have increased the doseage to 500 mg a day with benadryl. Has anyone had this problem. The counts dropped so drastically so fast. I have to go for platelet transfusion today and neuprogen shot. I guess the ATG didn't work, I'm worse now then I was before. I have to take the exjade since my ferritin level is 5900. I'm desperate, and if anyone could suggest anything it would be helpful. My e-mail is del1134@yahoo.com or post on marrowforum. Thanks. Lynn

[Marlene]

Lynn,

I replied to your private message.

I would stop the Exjade immediately. Cytopenia (dropping blood counts) is a rare side effect of Exjade. And seeing that you have problems with it already, I would not take any more chances with it.

Desferal is safer.


Marlene

[JEZ]

I felt the same way after the ATG. I was worse than when I went in. My counts are still not responding, and I couldn't be alone when I came home or drive. The serum sickness is bad, the pain is unbearable. Down my legs and arms the skin is numb, and if you touch it it is very painful, then, of course, there is the shooting pains. And then there is weakness. I haven't heard of anyone else getting the numbness/pain. I had it last time with the horse ATG, but not as bad. I think it helps if you have a good support system but I don't have that with my family.
Now I have to take exjade, and I'm having an allergic reaction to it.
How is everything now, are all your count normal? Hope all is well with you and God Bless, Lynn

Lynn,

Thank you for your concern for me at a time when you are going through so much... I wish I knew more about iron overload and the meds you are trying. Know that my heart felt concern is with you.... I have just had to stop my cyclosporine after a successful 2 year run with it (indications of kidney toxicity) and am trying a new drug (generic Imuran) as an immunosuppressant... my counts are terrific now and I am hoping and praying they stay that way. I just stopped the cyclosporine yesterday and started the Imuran 2 wks ago..... Hope all has turned around for you.... JEZ

[Lynn del]

Hi Jez:

THis was a bad week, my platelets went to 2 and my ANC 800. I had 3neuprogen shot and platelets transfusions on Tues and then on Friday, 2 bags. Anyway, my ferritin level was 5090 and now it's 3554 in only 2 weeks being on the exjade, and taking only 200mg - 350mg a day. I was suppose to take 1500mg a day. Monday my rbc was 10.2 and Thurs 10.4, I had a rbc transfusion on May 13. I hit the 2 month period on Friday, May 22, and still have serum sickness, but it's getting a little better. I asked the doctor for cyclosporine and he said there are too many side affects since I don't do well with meds.
I have heard of Imuran, my father took it for reumatoid arthritis. I hope it works well for you, and your counts rise to normal and stay there for many, many years. Lynn

[JEZ]

Hi Jez:

THis was a bad week, my platelets went to 2 and my ANC 800. I had 3neuprogen shot and platelets transfusions on Tues and then on Friday, 2 bags. Anyway, my ferritin level was 5090 and now it's 3554 in only 2 weeks being on the exjade, and taking only 200mg - 350mg a day. I was suppose to take 1500mg a day. Monday my rbc was 10.2 and Thurs 10.4, I had a rbc transfusion on May 13. I hit the 2 month period on Friday, May 22, and still have serum sickness, but it's getting a little better. I asked the doctor for cyclosporine and he said there are too many side affects since I don't do well with meds.
I have heard of Imuran, my father took it for reumatoid arthritis. I hope it works well for you, and your counts rise to normal and stay there for many, many years. Lynn

Well, if you ever do take cyclosporine, take the Neoral (brand name) as it was soooo much better than the generic and the only one that I responded to. It took me 3.5 months after ATG to see the beginning of a turn around. I too had severe serum sickness right after the ATG but was hospitalized and given massive doses of steroids IV to get rid of it... after about 2 wks. in hospital it was gone. I just have AA... not any of the other marrow disease... at least for now and hopefully forever. My heart is with you... it is such a tough row to hoe.... stay the course... and I pray you get nothing but the very best that medicine has to offer.

JEZ

[Vera W]

I read all of your stories and my heart goes out to you all, so many private battles going on! Sometimes it overwhelms me. It makes my battles seem so small. I think it helps knowing that we are all rooting for each other! Always in my prayers, Vera

[Lynn del]

Hi everyone:

My counts continue to drop drastically. Yesterday after a platelet transfusion on Wed they were 2, so I had another transfusion. Last night I had severe large petecei all over, brusing and blood blisters in my mouth. I stopped the exjade and diflucan, and I am on 10 mg. of prednisone for the joint pains, which isn't helping much. I've had a headache for 2 days now. All my counts are dropping. Tues. wht 4 - Anc 2400, Fri wht 3.5-Anc 1400, rbc Tues 9.4 - Fri 9 platelets were 3 on Tues and I had a transfusion then on Fri they were 2 and I had another transfusion, then the petecei and bruising last night.
I was better off before the rabbit ATG. Has this happened to anyone else, because when I had the horse ATG I didn't have any transfusions and my counts responded within 6 -8 weeks of treatment, but my platelets only went to 40. I'm really nervous!!! Any help would be appreciated - desperate, Lynn

[Lynn del]

Hi everyone:
Yesterday I went to the hospital. I had 2 bags of platelets and they went up to 2, so I must have zeroed out. Then I had 2 bags of rbc they were 7, and 2 more bags of platelets. I have to do back today to get checked. My platelets never went this low, and I was covered with petecei and bruises. THis can't continue, something is killing off my cells as soon as I get them. Lynn

[squirrellypoo]

Lynn del -

I replied to your PM but for anyone else here, I also stopped responding to the usual platelet pools and then also to single donor platelets but HLA matched platelets have worked really well for me, usually making me increment about 50 points per bag (I have to have another count about an hour after each bag just to be sure). I've only had one bag that didn't take, as I apparently already had antibodies against that particular person despite the matching.

The other thing that really has helped with the bleeding and petechiae when I'm between transfusions is Tranexamic Acid, which makes the blood "sticky" and really makes a difference for me. I take 1000mg 4 times a day when my platelets are low (I can usually feel it or see the signs) which is great if it happens to fall on a weekend when the haematology day units are closed.

[Marlene]

Lynn,

I too sent you a PM. Kind of along the same lines in that they should look at matching your platelets.

Your doc should also check your clotting times to make sure you clotting factors are functioning. Vitamin K is needed for proper blood clotting.

We would add in jello....he took the old fashion Knox gelatin. There was a reason they gave people jello when they had surgery....gelatin has clotting factors. We basically made up 1/3 of a pack, added OJ and drank it.

Marlene

[Lynn del]

Last weekend was really bad. I got petichiae all over and blood blisters in my mouth. The doctor made me wait until Sunday to go to the hospital. By that time I was bleeding out. My platelets were -0-. I had 4 bags of platelets and 2 red packed and Mon am my platelets were 1. Monday night I receive 0- random donor, 2 bags and my count went to 9. Tues I had A- single donor bag and the counts dropped again. Fri I has the HLA platelets, 2 bags, and it felt like they were my own, and my body wasn't in any destress. I haven't had a feeling like that ever with a transfusion. They are getting more from the same donor for next Wed.
They gave me Prograf, it's like cyclosporine. I just feel awful all the time. My body has been through so much and bottoming out didn't help. Now they tell me that it take 3 months for the rabbit ATG to work. Maybe 6 months. And on top of all this I still have serum sickess. God must be really testing me "to the limit". But I will fight the fight and win !!!! Thanks to everyone, Lynn

[Lynn del]

Marlene:
Thanks for all your advice. I stopped the exjade and diflucan,which probably bottomed me out. I'm going to try the Jello. Do you have to drink it or can you make regular Jello? I'm still on prednisone but they are lowering the dosage. THe prograf makes you cytopenia also, esp the platelets and white cells. Plus all the other side effects. For kidney failure I found out that putting watercress and 1 cup of water in a blender and drink it thru the day suppose to help, I'm going to try it. I know walnuts help the liver, because I did try it, and it worked. I ate 4 -5 walnuts a day and my liver went back to normal after the horse ATG. Also, milk thistle helps the liver.
Thanks, Lynn

[Marlene]

Yes, you can make regular jello from the Knox gelatin powder. I don't think the pre-mixed "JELLO" boxes are the same though.

It really did help John when his gums were bleeding.

Do you think the serum sickness may be related to all the "unmatched" platelets your body was destroying which caused the pain/fevers, and that maybe it will get better as long as they continue do HLA matching for you?

[Lynn del]

Hi Marlene:

Yes, I think now that it's related to the platelets. My body goes into a "destroy mode" and it goes after 'all' the platelets. The 0- platelets I got from random donors I could tolerate, that's when my count went from 1 to 9. I am going today to see how the HLA platelets worked, but I'm so sick today with a gum infection that's going thru my body. I PM messaged you, reply to mind. I hope you get it. It's as if we all have to become doctors and tell the doctors or fight with them to get what we need. Their ego plays a part in this for sure. Lynn

[Lynn del]

Hi everyone:
I had my cuonts checked and my platelets are "1" again !! I think it's from the Prograf, but I only have been taking 1 and I was suppose to take 2 two times a day. I don't know what to do? When the nurses called the red cross for platelets, they found out that the red cross HLAed someone else and already sent the platelets to my hospital. That was amazing. So I am going tomorrow for platelets again. I feel weaker and weaker. I wish the rabbit ATG would kick in and work. :( Pray for me, Lynn

[imckinne]

How long after ATG could the serum sickness still ocurr? Mom is almost 4 weeks out and, although she's had other major complications, she seems to have no signs of serum sickness and I'm wondering if we can believe that she's been spared that horror. In addition to the prednisone, she'd been on high doses of another steriod to reduce vascular inflammation from the brain and back bleed she experienced during the treatment (despite a morning transfusion her platelets had dropped to 7000 and they were having difficulty regulating her blood pressure in response to the ATG). I'm wondering if the extra steroids may have helped avoid the serum sickness.

[Hopeful]

Hi,

It is my understanding that the risk of serum sickness is greatest for 14 days following ATG. I was tapered off of prednisone by 4 weeks post-ATG. So, she likely is over the risk of serum sickness if she is almost 4 weeks out.

[Lynn del]

Hi everyone:
I have been tapering off the prednisone and the joint pains have returned. I have been going to the hospital every other day for platelet transfusions and sometimes red cells. Yesterday my platelets were "1", last week they were between 5 - 6. I'm not getting rigors anymore unless they give me platelets other then 0+ or 0-. THe HLA platelets didn't seem to make a difference. And they said I have no antibodies, even though I have had sooo many platelet transfusions. THe white cells are 3.4 with ANC 1600, red cell droppingnow at 8.5 but I had a transfusion of them on FRiday. I was doing okay until I took the exjade. But now it should be out of my system but my counts have not come back. I was reading Ryan's story in the AA bulletin and he had EPO injections. I never heard of them before. Has anyone? My doctor want me to go for a BMT but it's only been 3 1/2 months since the rabbit ATG. I had a bad reaction to Prograf, hyper, shaking, and itchy, and I was only taking a quarter of the doseage, so I stopped taking it. I was better before the ATG. Lynn

[imckinne]

Monday morning my mother was in terrible terrible pain and my first thought was that it was serum sickness despite the fact that over 4 weeks had passed since the ATG. Unfortunately, it turned out to be Gram Neg sepsis. SHe now has some damage to her heart valve but otherwise seems to be responding to the antibiotics again. SHe's been through so much and it's so hard to imagine that she will ever recover from the side effects of treatment....and, of course, we don't even know if the ATG will do anything for her.

[Lynn del]

Hi everyone:
I have "good news" my platelets went from 1000 to 23000 yesterday. Maybe the rabbit ATG is finally working. Unfortunately, the reds are crashing and the whites are 2. It's been 3 1/2 months since the rabbit ATG. Lynn

[Ruth Cuadra]

Hi, Lynn.

It good to hear you've finally seen an upturn in your counts. You've really had a terrible time through this process, but it sounds like your hard work and patience may now be paying off. My fingers are crossed that the rest of your counts start to come up too.

Regards,
Ruth

[Lynn del]

Hi everyone:

Today my platelets were 4. How could they go from 23000 to 4000 in 2 days, they must have made a mistake. Whites 2,anc 800, red 7. My doctor wants me go for for a BMT. The rabbit ATG hasn't had time to work yet, right !!! Now I'm down to 5 mg. prednisone and have bad joint pains again and I'm very weak. I've had a headache now for 4 days. So I'm still in serum sickness! I was looking up immunosuppresents and I found Imuran not to have really bad side effects as the others. Has anyone taken Imuran and found it worked? This is really a long haul, and without marrowforum I don't know what I would have done, thanks for the support. Lynn

[Chirley]

Hi, just wanted to let you know what happened to me last time I went to day care.

I usually have my blood test the day before my day care visit because the nurses can't get blood out of my port. Last time the nurse did get blood from my port but it came out slowly and with lots of fiddling around. So this means I had blood taken 2 days in a row.

The first test showed Hb of 78 neuts of 0.5 and lymphs of 0.3 and platelets of 220 the second test (from my port) showed Hb of 73 neuts of 0.9 and lymphs of 0.5 and platelets of 5 ????. I've never had a low platelet count before. The nurse said that I had to have a platelet transfusion and called the doctor back to day care to see me. He said that because the platelet problem had developed so quickly that I had to have an immediate BMB and commence chemo as soon as possible. I asked for another blood test because I couldn't believe the results. This time they took the blood from my arm and the results were almost exactly the same as the test from the day before. It turns out that the blood from my port had small clots in it that had interfered with the results.

It's scary to think that I could have been treated on the results of a faulty test.

I know I don't have AA but the possibility of the same problem happening with your blood results is very real. I now know that if I think the results are out of the norm that I need to ask for them to be repeated.

Best of luck

Chirley

[Marlene]

Our doc will recheck counts if he gets something that doesn't make sense. I cannot believe they jumped to conclusions so quickly based on one blood draw.

We never rely on just one CBC, instead, we look at trends.

Marlene

[Neil Cuadra]

Good for you, Chirley.

This is an example of why it's important for patients to pay attention to their own counts. Sometimes you just have a feeling that the results aren't right because they are way out of line with previous tests. Some patients can even predict their red cell count by how they feel.

A phlebotomist or lab technician won't know what your counts are "supposed to be" so you have to be confident enough to speak up when you think something is wrong.

[Lynn del]

Hi everyone:
Yesterday my platelet count went down to 1, and my red cells were 7.0 on Monday and Tues. 6.2. I got rigors after the 2ned bag of platelets, they gave me demerol. Then they started the red cell transfusion and I kept getting rigors, 3 times. They kept giving me benadryl and demoral. I had a fever of 101.5 and a horrible headache. So I have to go again today for new red cells. THe nurse thought the blood was contaminated. I never had such a bad reaction, and never to red cells. The fever stopped last night but the headache is still there. I can't take the Prograf because of the side effects, so I asked about cellcept or Imuran. Has anyone taked these meds? I also asked about Procrit and the doctor said it probably won't work. No testing. I feel that I'm doing this alone and the doctor just wants me to have a BMT. It's only been 3 1/2 months since the ATG. I'm reducing the prednisone, I'm at 5 mg now and the serum sickness is coming back. Any help would be appreciated. Thanks, Lynn

[Lynn del]

Hi everyone:

I just talked to my doctor and he said my only option now is a BMT. He said the rabbit ATG isn't working and I'm going for too many blood products.I want to talk to another doctor and get another opinion. Can anyone give me the name and number of a doctor they trust. The problem is that I can't go far away because I need platelet transfusions every other day. I live in the New York area. I can go as far as 1 day away. Thanks, Lynn

[Hawaii Bill]

Hi Lynn,
The National Institutes of Health is in Bethesda, MD, and they offer clinical trials for patients with AA. The evaluation is free, and if you are selected, the treatment is free as well (as long as you follow their protocol).
You can get on a train and go there from NYC in just a few hours.
Here's a link:
http://patientrecruitment.nhlbi.nih.gov/AplasticAnemia.aspx

The best of luck to you!

Bill

[JEZ]

Lynn,

I was on cyclosporine for 2 years with great results after ATG (remsission) but recently had increasing kidney toxicity so I weaned off of the cyclosporine in May/June and started generic Imuran (AZAT). I have only been on it a little over a month. I started it with my platelets at 148K and they dropped to 131K at my last lab. My WBC went from 7 to 5. But my doctor tells me that as long as they did not crash we are on the right course and will watch and see. Apparently the RBC would take 3 mos to gradually go down if they were going to. My hemoglobin did drop to 10 (from normal). My hope is that the counts stabilize high and do not continue to trend down... I feel a thousand times better than I have in months so it sure would be nice if the Imuran does the trick. For me, there are no side effects where as on the cyclosporine I did have some. I do not think that your situation is similar to mine however because so far you have not responded to the ATG... but I don't know. I sure hope you find your healthy place in all of this.

JEZ

[Marlene]

Lynn,

Anywhere you go your doctor should be able to set you up to get blood products if needed during your consult. Like Bill said, both NIH and Hopkins are doable regarding distance and both are served by Amtrak.

Marlene

[Lynn del]

Hi everyone:
Yesterday I had red cells, Tues platelets with rigors and fever. Today I woke up with huge blood blisters in my mouth and tongue and my gums are bleeding. I had the horse ATG 11 years ago and it worked in 3 weeks. It's been 3 1/2 months since the rabbit ATG and it's made me worse then I was before it. Is it too soon to have the the horse ATG? My platelets are 1 and the reds drop as soon as I get them, and the whites are not holding. Before the ATG I had to go once a month for red cells now every blood line is crashing. THey won't give my cyclosporine or Prograf again because they said that it would bring my counts down. NOw I'm really scared and don't know what to do, and I'm running out of time. Lynn

[Hopeful]

Lynn,

My heart goes out to you.

I agree that you should contact Neil Young at NIH *immediately* for a 2nd opinion.

You can email his nurse Olga at nunezo[at sign]nhlbi.nih.gov

Don't procrastinate. Do it now! Second opinion appointments are free there. Treatment is too - if you are part of their clinical trials.

There is no harm in sending that email now.

[Lynn del]

What was Olga's e-mail. I tryed to use it and it didn't work. Lynn

[Hopeful]

Lynn,

replace the [at sign] with @

His other nurse is Barbara:
weinsbar[at sign]nhlbi.nih.gov

I didn't want to type the whole email address to prevent them from getting spam'ed.

Good Luck!

[Hawaii Bill]

I agree with Hopeful. NIH seems to be within your reach. Get in touch with them asap. I hope they can arrange to see you right away. They will probably want a copy of your medical records (they wanted mine).
Please keep us posted!
Bill

[Lynn del]

I have an appt with a doctor from NYU next Wed. Sunday I were to ER because I have horrible pressure in my head. They did a CT-scan and there were no brain bleeds or swelling. I have a severe sinus infection and my right ear canal is completely blocked so I can't hear. I've been on antibiotics for 1 week and it's not helping. The pain is unbearable. I've also been taking guifensen and it's really not loosing it up. I've never had anything this bad before. Sun, red 9.6, wht 4, platelet 5, Tues, red 9.2, wht 5.2,anc 3100, platelets 1.
I called the NIH and my doctor has to call them. Thanks for all your concern. Lynn

[JEZ]

I have an appt with a doctor from NYU next Wed. Sunday I were to ER because I have horrible pressure in my head. They did a CT-scan and there were no brain bleeds or swelling. I have a severe sinus infection and my right ear canal is completely blocked so I can't hear. I've been on antibiotics for 1 week and it's not helping. The pain is unbearable. I've also been taking guifensen and it's really not loosing it up. I've never had anything this bad before. Sun, red 9.6, wht 4, platelet 5, Tues, red 9.2, wht 5.2,anc 3100, platelets 1.
I called the NIH and my doctor has to call them. Thanks for all your concern. Lynn

My heart goes out to you, Lynn.... I hope you get the absolute best medical interventions that you can .... keep us posted.
JEZ

[Lynn del]

Hi everyone:

I went to the ER Sat. night because there was blood in my urine. The put me ICU and I had platelets and red blood. My plt were 11, after the plt they went to 3 then 5. Today there is alot of blood and I had an MRI on
Fri and they found a brain bleed on the right side top of head. It seems the more I go for platelets the lower the number goes. I have a bad cold and both my ears are clogged and head and stomach hurts. Lynn

[Margie]

Dear Lynn Del,

I can't advise you because I also have very low platelets and I don't know what to do either. I would like you to know though that you are in my thoughts & that I am pulling for you. Also I am praying for you.

Margie

[michelle_lapuz]

Hi Lynn:

hang in there, sounds like a bit of a rough patch but it shall pass.....i hope you feel better soon - my platelets are also chronically low - had the 'blood' behind the ear drum (took over a month to clear up), had the blood on the head (couldn't speak for 5-minutes) and all the other fun bloody things but thankfully at different times - you will get through it ;)

Michelle

[Lynn del]

The dr from NYU is proposing Horse ATG and maybe rituxan, but it's not FDA approved for AA. I have to have a BMB on Monday, and another MRI. He thinks I might also have ITP, and the rituxan will bring the platelets up. Now my red cell are dropping fast also. The whites are holding. I guess the rabbit ATG isn't working. Is it too soon to have the horse ATG, it's been 4 months since the rabbit? We are all in this together and the support is great !!! Lynn

[Lynn del]

Hi,
The doctor wants to put me on cyclosporine, but want I've read about the side effects and skin cancer, lymphoma, and kidney failure is horrible. Has anyone gotten skin cancer or lymphome from cyclosporine? They tried to give it to me 11 years ago but my body wouldn't tolerate it. Any info would be helpful, thanks. Lynn

[JEZ]

Hi,
The doctor wants to put me on cyclosporine, but want I've read about the side effects and skin cancer, lymphoma, and kidney failure is horrible. Has anyone gotten skin cancer or lymphome from cyclosporine? They tried to give it to me 11 years ago but my body wouldn't tolerate it. Any info would be helpful, thanks. Lynn

I understand your concern but, as my doctor said when I went on it, powerful drugs to control something as serious as bone marrow failure sometimes have powerful side effects. I personally felt it was worth the risk and had an excellent response over the two years I was able to take it. My counts went back to normal gradually. When my doctor noticed that it was starting to have an effect on my kidneys, she took my off and I am in the process of trying other drugs. My kidneys recovered when the drug was discontinued. I do not know if any of these immunosuppressent drugs will eventually cause cancer but I do believe they are significantly prolonging my life and allowing me quality of life. Each person has to weigh this in their own situation and life.

My best wishes are always with you, Lynn... I know you have been on a very tough journey.

JEZ

[Lynn del]

Hi everyone:
My platelets have been around 3 to 6, but Tues they went to 2 and Friday thet went to 19. Now Monday they went to 5 again. They are spiking and trying to work. I have been though so much and practically lived at the hospital for 5 months, I have such bad reactions to meds, so I'm afraid to take the cyclosporine because everything I have taken before brought my counts down. Does the cyclo bring your count down before they respond because I don't have much to work with? I had a BMB to see if I had ITP also because they wanted to give me Rituxan but I didn't. It's not FDA approved for AA.
My brain bleeds are stopping, one was a hemorage and that is why I was getting such pressure and pain in my head, but after the last MRI the pain got worse again for about a week. The report said that the bleeds were interfering with signals. I still get some pain from the large bleed.
Thanks, Lynn

[Hopeful]

Hi Lynn,

It is my understanding that cyclosporine is generally well tolerated. Of course, there are always exceptions. Be sure not to exceed 5 mg/kg/day. You may have been on a much higher dosage 11 years ago, as the toxicity wasn't as well understood then. Unfortunately, it takes at least 3 months before you will know if it is working or not. I've never heard of it lowering someone's counts before raising them.

Best wishes!

[Lynn del]

I had 2 bags of platelets today and they went from Fri. 7 to 4 today. My white cells are 3. and neutrophils 900, red 8.1. I think I'm going to have to have the horse serum. The rabbit isn't working. Sept 22 will be 6 months of going to the hospital all the time. It's too much to handle. Now to go thru this tx again is bad, I really don't have the support I need to go through this again. I just can't keep going for transfusion and neuprogen shots all the time. I'm worse now than I was before the rabbit. I'm trying not to get too depressed. It's just a bad day, Lynn

[Lynn del]

I have been having brain bleeds and I'm over the 6 month period from the rabbit ATG. I saw my doctor and he said that if I have a BMT since they found a match, that I would have 40 % chance of survival because of my age. So I want to have the horse ATG instead. I've been waiting to hear from him about a date to go. I've been having numerous platelet transfusions and my platelets are around 3. They won't go up. All my counts are dropping without transfusions. I had a blood test and my liver was off, so I had a sonogram and it looked normal. I don't know what to do now.

[Vera W]

First off get another opinion. How old are you Lyn? I am 56 and my age wasn't an issue. Check out this transplant option to it's fullest, don't lose a good match! Educate yourself, explore all the options. Search yourself and decide for yourself don't let anyone scare you, remember thet you are going for the best quality of life, don't let any one scare you. Stay POSITIVE!! Vera

[Vera W]

I went back and read that you are in your 40ties, and that made me mad. Is this dr a transplant specialist? Have you had a consultation with one? You need to, Do you like this doctor?

[Vera W]

I'm sorry Lyn I was looking at hopefulls age I have some antibiotic eyedrops in my eye and it's hard to see,, so how old are you?

[leeslay]

I am new to this website and have been trying to read all of the posts. I wish I knew about this website sooner. LynnDel - my thoughts and prayers go out to you. I went through the rabbit atg as well and was very sick for about 3 months. My counts went up but not high enough to be transfusion free, so my Dr. now wants to go ahead with the horse ATG. I have to get desensitzed first because I had a reaction to the skin test. I can't even imagine what you have been through. I hope you have friends/family who can help you. Don't be to proud when it comes to help, I was for awhile and then realized I really did need it.
I am also getting another BMB and MRI this week so I'll be thinking of you.
Good luck to everyone and keep your chins up!!!

[dkimmel]

It is with great sadness that I share this news. My dear friend Lynn (Lynn del) has died. We met here, on marrowforums. Her friendship and support have meant so much to me. I am so thankful for this site, for giving me the opportunity to have met Lynn. She was a strong and selfless person and she will be dearly missed.

[Marlene]

Thanks for taking the time to let us know about Lynn. I know she was struggling with this disease for quite some time and had numerous issues as a result of it.

Marlene

[JEZ]

I am just so sorry to hear about Lyn... she has been on my heart for a while and I know she had a tough time. I don't really have much to say except that I am so sad to hear the news... I will remember her from this forum as a valiant person who never stopped trying in spite of feeling so sick.

JEZ

[Ruth Cuadra]

Thank you, dkimmel, for sharing this news. I'm sorry for the loss of your friend, Lynn del, but glad that you had the opportunity to meet and support each other through Marrowforums. If you have any contact with Lynn's family, please give them our collective condolences. The diseases we are dealing with can be harsh as Lynn certainly experienced, but the legacy of her posts and those of her supporters on this site will help countless others in the future.

With sympathy,
Ruth Cuadra