Newbie

[Windhorse1]

Hi all,

I was just diagnosed with SAA yesterday. I am obviously brand-new and wanted to just put my toe in the water and say "hello."

My doc has me on ATG along and cyclosporine. She wants to try this drug treatment before considering a transplant.

So...again, I'm just saying hi for now, but have a million questions that I'll post later.

Thanks!
Matt
(Windhorse1)

[triumphe64]

Contact Leigh Clark at

www.aamds.org

She can get you off to a good start.

[Hopeful]

Hi Windhorse1,

I had ATG about 8 years ago and am still on cyclosporine. How old are you and when is your treatment scheduled?

The AA&MDSIF has a bunch of great videos that will get you up to speed on AA in no-time. They are presented by some of the best specialists in the country. You can check them out at:

https://www.pathlms.com/aamdsif/categories/363/courses

Be strong!

[Windhorse1]

Hi triumphe and hopeful,

Thanks for replying. I'm 58, and they have already begun the ATG and cyclosporine.

No ill effects so far. Guess I'll have to be patient, though. I've learned that they tend to try this treatment first, and that, given my age, transplant is not considered unless the ATG and cyclosporin don't work.

Guess I'd like to know about quality of life during this treatment, if anyone could address that.

Thanks!

[KMac]

Hi Windhorse1,

I live up the hill from you in Nederland. I was treated for SAA with ATG/CsA in March 2012 at CBCI/PSL in Denver. I responded slowly but well. I am finally wrapping up my CsA taper. My most recent counts this week were Hgb 14.8, Plt 151, ANC 1907 - pretty much normal. I have my life back now, work full-time, exercise a lot, and generally feel pretty great. But it was a long, long and uncertain road. And the uncertainty remains. Some of my counts still rise and fall unexpectedly.

As to quality of life during treatment, wow does that ever vary from patient to patient. This is such a hard to understand disease, with such a wide variety of symptoms and outcomes. I got the serum sickness, probably from tapering my prednisone too rapidly, and that was uncomfortable. I also got iron overload from the 24 red blood cell transfusions I received, and was heavily chelated to remove the excess iron.

May I ask where you are being treated? I recommend CBCI highly in the Denver area, though there are other good places in the area I believe.

I would recommend keeping track of your transfusions, making sure you are tested for iron overload, ensuring your kidney function is monitored closely (a side effect of CsA is temporary kidney damage, that can become permanent), tracking your reticulocyte count to see if your body is responding to treatment by making new red blood, watching out for serum sickness, making sure that your CsA trough is tracked closely and correctly, making sure your PICC line is kept clean, obeying neutropenic precautions in the food you eat (these are all things CBCI would be on top of, and a hematologist well-versed with SAA treatment elsewhere would be on top of as well).

My greatest symptom was extreme fatigue from the severe anemia, plus feeling always like I had a bad cold (I assume from the severe neutropenia). Bruising and bleeding were also common with me from the low platelets. These symptoms went on for months, but slowly got better as my counts improved. I have been lucky to very slowly and haltingly improve my counts and feeling of good health year over year, for the past five years now. It is so wonderful to feel normal again.

Hang in there! I believe exercise also has really helped me get better, even when I was exhausted and very sick (perhaps it is most important to get up and keep moving then). Psychologically, using this time to reconnect with the people, things, activities you are most fond of - I believe that too is very important and helpful.

Something rare, strange, challenging, and not fully understood had happened to us. Though I would never have chosen it, I have learned a lot on this journey, and stand changed forever. SAA sure makes you appreciate good health and the energy to get up and do things!

I wish I could tell you what to expect. I was so frightened, but this once nearly-always fatal disease now has a greatly improved prognosis, and hematologists are getting better and better at treating it, despite all that is still unknown. Along those lines, you may want to look into the new drug Eltrombopag as a compliment to your treatment. NIH trials have shown great promise in this when combined with ATG & CsA.

Best of luck to you - keep as positive as you can and keep fighting. Feel free to let me know if you have any additional questions. Also AAMDS is a wonderful organization for information and support.

Kevin

[Hopeful]

Hi Windhorse1,

If you made it through the first night of ATG with no ill effects, you are pretty lucky, as that usually is the worst it! Where are you in your treatment? Are you still in the hospital?

Once you are on a "maintenance dose" of cyclosporine, it is pretty well tolerated by most people. Stay hydrated, as it is hard on the kidneys. You will be tired on the higher doses.

I think the exercise thing is key, as Kmac mentioned. It is good for your physical and mental well being. I think you can have a pretty good Quality of Life once you are off the prednisone, on a maintenance dose of cyclosporine, and are no longer transfusion dependent. You need to be patient though and give it 6-9 months before deciding whether or not your treatment worked. Waiting is the hardest part. Even if you are an early responder, I would be careful tapering the cyclosporine too quickly.

It is good to hear from you again Kmac! I am glad that you are doing so well!

[Windhorse1]

Hi Kevin,

Thank you for your thorough reply. I suppose that, given the rarity of this disease, were there to be a “local” support group, we’re probably it! So, I very much appreciate you reaching out.

I am being treated at the Longmont Methodist Hospital, and my initial doc has been Robinson. I’ve also seen Fox this weekend, I do believe they’re both with CBCI. So, that’s good news. I am only learning the acronyms and their significance, so will be able to give you my own soon. All very low, of course.

I will be keeping a close eye on the transfusions. I have had three so far, and as this is the second to last day of my ATG injections, they wanted my platelet level to be up more than they were.

It is so encouraging to hear you speak of your life improving. The first couple of days that I was here, before they took and interpreted the bone-marrow biopsy, the only thing they spoke of was Leukemia. This hit my wife and I very hard, of course, as I have always been healthy and full of life energy. It felt like a death sentence. So, serious as it is, SAA actually sounded like good news. You seem to attest to the fact that an active and healthy life can be re-captured, and I look forward to that!

Yes, I have heard of Eltrombopag (sp?) but only just today. There is a great talk by a NIH researcher on Youtube, and she spoke of it.

Again, I so appreciate the time you took to offer words of encouragement and support.

I’ll keep in touch, if you’re willing.

Thanks,
Matt

[Windhorse1]

Hi Hopeful - love that moniker, by the way .

This format takes some getting used to, so still trying out best ways to reply to people in the best way.

Yes, I've tolerated the ATG pretty well, which is great. The patience thing will be, as you say, the hardest part!

I love to exercise and will be SO ready to do that when I get back up to speed a little. My blood counts were so low that I had zero energy to do anything. So, even getting those platelet and red blood cell counts up via transfusion has already vastly increased my zest for life and bodes well, I think, for the desire to get out and hike and ride horses (two things that my wife and I love doing together).

Also, thank you for responding and giving advice and encouragement!

Matt

[jjcanada]

I am part off the NIH eltrombopag trial. If you have any questions, I'll try to answer them. Dr Young and Dr Townsley are amazing, and all the staff at the NIH as well. Very knowledgeable!!

Take care,
Jackie

[Windhorse1]

Hi JJCanada,

Yes, I do have questions about eltrombopag. I am ignorant enough about it that I honestly don't know the best questions to ask! Anything you can tell me about it would be useful. Thank you!

Meanwhile, I'll be working on educating myself about it, so we can have a productive conversation about it.

Thank you for being willing to address it with me.

Matt (Windhorse)

[Sally C]

Hi jjcanada and Windhorse1,
My husband was the first MDS guinea pig at NIH for Eltrombopag. He has been in remission for over 5 years after needing over 125 blood/platelet transfusions before the trial. Please check out my posts - there are many regarding Promacta. I'll be glad to answer any questions I can remember the answers to. He has been in clinical trials at NIH since spring of 2009.
I wish you both well.
God Bless,
Sally

[jjcanada]

Hi Matt

So i started my H-atg in January 2016. They gave me eltrombopag from day 1 of treatment. I had very few side effects from it, I think most of my issues came from the cyclosporine. And even that, I can`t complain. I made sure I drank alot to keep my liver and kidneys flushed.
In July, they took me off the eltrombopag, since the trial only allowed it for 6 months. At that time my platelets were 237,000. They since have continuously dropped, to a low of 137,000. But just last week, they rose again. So happy to say, all my numbers were in the normal range last week, for the first time in over 10 years!!
I`m not sure if that answers any of the questions you have, but if not, let me know!

take care,
Jackie