Husband starts 2nd ATG, cyclosporine Monday

[SherryM]

I'm a scared spouse of hubby starting 2nd round ATG (horse this time) and first time on cyclosporin. 1st round of rabbit ATG worked for 1.5 yrs, nor transfusion dependent @2 weeks. He has MDS. refractory cytopenia w/multilineage dysplasia. 57 yrs old.

Not sure what to expect from added cyclosporin treatment...sounds pretty difficult. He had a heart attack during last ATG but cardio has cleared him. We have severely handicapped daughter at home and I'm in ill health as well. Sounds like a soap opera!His brother is going with him to Tampa, Moffitt Center (Dr. Alan List). We're both nervous wrecks this time. Can anyone write to me maybe? gldcst@comcast.net PS. He thinks he'll come home and be ready to work right away...out in the sun; he's a boat captain. help please.
SherryM

[Neil Cuadra]

Hi Sherry.

It's natural to be scared, but I'll point out some positives that I hope you'll keep in mind.

• When ATG treatment has worked before, it can work the same way (or better) again. Many patients repeat ATG. Forum member Andrea Pecor has had ATG five times and is still going strong.
  
  
• At age 57 your husband is not a kid, but many MDS patients are in their 60s or older and respond well to treatment. If he's in pretty good health other than MDS (used to fresh air and exercise as a boat captain) then that gives him an edge too.
  
  
• Since the cardiologist says he's healthy enough to proceed, you get to go for it. Otherwise you'd have to choose from other treatment options that may not be as likely to succeed.
  
  
• Cyclosporin usually accompanies ATG treatment so I'm puzzled why you didn't have it with the previous ATG; that's something you can ask Dr. List. Your husband is getting the standard combination this time and that's good. Cyclosporin has side potential effects but the doctors know to watch out for them or try to prevent them. Sometimes it causes hair growth, which can be an annoyance for women, but less likely to bother men.
  
  
• I'm sorry that you aren't in great health yourself and that you have to care for a daughter and husband at the same time, so thank goodness your brother-in-law is stepping in. That type of family support makes a big difference.
  
  
• Finally, you're in great hands with Dr. List and the Moffitt Center!

It sounds like you and your husband are doing all the right things, including asking to talk to others who have had similar experiences, and I wish you the best of luck.

[SherryM]

Neil,
thank you so much for responding. I read all the posts from Andrea...thank you for sending that link. I've been browsing around here for over a year and finally realized I truly need some "been there done that" contact with a real live cyber person.

I'm thinking that cyclosporin may not have been used last time (2.5 yrs ago) because that was a clinical study my husband was in with Dr. List. We didn't know enough about it to question this before hand.

May I ask- is it usual for someone going thru frequent transfusions to display a ummmm...kind of Jekyl and Hyde personality? The difference in the week before and the week following the transfusions has been considerable. At first I thought he was angry with us but have come to see the pattern here...at least in our circumstance. And even better...he has come to acknowledge the radical changes as well so we can be more gentle with each other.

Just curious if others have experienced this as well.

And yes...he is very healthy otherwise. This took us completely by surprise and it's suspected he developed some sort of poisoning from benzene used in so many chemicals on the boat.

And I am deeply greatful to my brother in law for stepping in.
I feel so guilty that I can't be with him but our dtr is not able to travel.

Thanks again...it feels so good to "talk" to someone who understands.

SherryM

[Neil Cuadra]

Sherry,

I haven't observed the Jekyl and Hyde syndrome that you describe. Maybe other forum members have. But people who have a low red count or low platelets are not only easily exhausted and subject to bruising but they can also feel just plain lousy. In the same way that an injured dog may snap at its master, a patient who feels awful may be in a generally bad mood, even if they aren't reporting each individual symptom they experience. When they get a transfusion they can feel instantly better and their mood lightens. I don't know if that's what you're seeing but I see how the effect could happen.

Please don't feel guilty about not going to Tampa. You obviously would if you could, your husband will have family with him, and you're taking care of your daughter as a devoted parent. I doubt that your family would want or expect you to do otherwise.

[Lisa V]

ATG has been used to treat AA for the past few decades, but its use with certain categories of MDS is still relatively new and somewhat experimental. It sounds like your husband has already been part of that experiment, Sherry. The good part of that is that his team will have undoubtedly learned things from the first treatment that will help them in understanding his particular response pattern. Under the circumstances I'm sure they will be monitoring his cardiac response very closely. You might ask if they think perhaps the serum was delivered too quickly the first time and could be slowed down a bit this time? Or do they think it was unrelated?

I agree with Neil that if your husband had a good response the first time, that bodes well for his achieving a response a second time too. Recent findings are also showing horse ATG to be more effective than rabbit, and the addition of cyclosporine to his regimen should help produce a longer lasting response. My husband has had 2 ATGs too, and has had a much better response the second time, probably because we have prolonged the cyclosporine rather than doing a quick taper like he had the first time.

I am assuming prednisone will be part of your husband's protocol too. I didn't notice any major mood swings or personality changes (apart from general energy level) before and after transfusions, but I sure did see them with the prednisone, so that is something to be aware of. Once we figured out that was what was making him so irritable, it was easier to deal with...... at least somewhat. Different people react differently to it, and fortunately it's only temporary, as it is usually tapered off within a month of treatment.

How soon he'll be able to return to work remains to be seen. My husband had a much harder time bouncing back the first time around because they had him on a higher dosage of both cyclosporine and prednisone, both of which can have unpleasant side effects at the higher levels. The cyclo was making him feel tired and muddle-headed, giving him tremors and making his voice weak and hoarse. By the second time around we had already tinkered with his meds enough to know how much he could tolerate, so he was able to step right back into his usual routine as soon as he came home (we have a farm and do physical work outdoors too). Finding the right levels makes a big difference!

Good luck to you both, and I agree it helps a lot to talk to others who have been there too.

[Sally C]

Hi Sherry,
I was going to ask you somewhat the same thing that Lisa V asked you re:steroids.
If your husband is like mine, he always has received a healthy dose of steroids as part of his pre-meds before transfusions. Steroids can make people irritable as well as more emotional than usual.
You have alot on your plate. I wish you well.
God Bless,
Sally, wife of MDS patient

[SherryM]

Can't tell you how pleased I am to see your responses Lisa, Sally and Neil! Our household is superstressed today. Jim leaves tomorrow for the 5 hour drive to Tampa (moffitt) and the PICC line goes in and treatment begins Monday. I've made notes of all your info and suggestions to tell him about.

Re: prednisone; he hasn't been on prednisone before any transfusions at all. He was on it when he came home from Moffitt after the first round of ATG and he wasn't so much irritable as he was talkative and speedy. I had always wished I had a husband who wanted to talk more..HA! I'm now careful what I wish for. I would wake up in the AM and he'd be lying there staring at me and begin blabbing away the minute I opened my eyes. He followed me around when I went to the bathroom so he could keep up his conversation. It was hilarious and we laugh about it now.

I suspect things may be quite different this time around with the addition of the cyclosporine. I've read somewhere that it's not advisable to go out in the sun when on cyclosporine...is this true? I also read that there were two forms of cyclosporine, one that may be more easily tolerated? I will try to do a search of this board later today but any personal experience would be much appreciated.

Again thank you all so very much!
PS is it bad form to send a private email to another member?

Sherry in finally cooled off Florida

[donna j.]

I am curious why some MDS people are prescribed ATG and Cyclosporine. I have been going through Vidaza cycles while waiting for a transplant. What is the difference. Is it our diagnoses?
i wonder if excessive sunlight is not a cause. I have sailed for 30 years and was on the beach when not sailing.

[Sally C]

Hey Sherry,
I'm glad you're finding support from the forum. It is wonderful!
I did a search and copied this for you re:Cyclosporine and the sun...

"This drug may increase your risk for developing skin cancer. Avoid prolonged sun exposure, tanning booths and sunlamps. Use a sunscreen and wear protective clothing when outdoors."

Also I don't think anyone would think it bad form to send a private e-mail to someone.
So glad you've calmed down.
God Bless,
Sally

[Greg H]

Originally Posted by donna j.

I am curious why some MDS people are prescribed ATG and Cyclosporine. I have been going through Vidaza cycles while waiting for a transplant. What is the difference. Is it our diagnoses?

Hey Donna!

ATG & Cyclosporine -- that is, immunosuppressive therapy [IST] -- works for a fraction of MDS patients, mostly those in the lower-risk classification. There's been a lot of work at a lot of research centers to figure out exactly which patients will respond, and the studies come back with different answers, so the researchers haven't gotten it completely puzzled out yet.

Among the characteristics that various studies have pegged as possible predictors of IST success are:
- Younger patient
- IPSS Low Risk or INT-1
- Trisomy 8
- Hypocellular marrow
- PNH clone
- HLA DR15
- Lower transfusion need; fewer lifetime transfusions.

There may be more.

Hope that helps. Take care!

Greg

[SherryM]

Hi Donna and all....
Greg is correct...my husband was 54 at age of dx which was considered young, and there are no chromosome abnormalities,...more reasons which I've forgotten (sorry). Basically he's considered a good candidate for this type of treatment. If this doesn't work he'll then be put on drugs like Vidaza etc.

He and his brother just left for Tampa (Moffitt Cancer Center) and he'll begin tomorrow. Sally...thank you for looking up cyclosporine for me. Appreciate it. Our daughter Jamie who is 22 and looks 10 and acts like 2 has Down Syndrome and Autism and is missing him already. He's such a good father and husband. She also happens to have iron deficiency anemia and has been hospitalized several times recently needing transfusions. I sure wish they'd come up with a home hemoglobin test for our family!

Thank you all so much for your responses. I feel much less alone and know where to come for help now!
Sherry