Newby to this site

[Missyblue]

I am a new member to this site/forum and just wanted to say "Hi" and say that I am really glad that I found it. I was dx with very severe aplastic anemia 11/07 and I have been getting bummed that after a year my numbers will not rise. I will be weened of the cyclosporine starting in Nov and I am afraid. Any words of support? I am a 46 year old female that has always been strong, healthy and optimistic and independent. Wow what a change when life throws you a curve. I have never been depressed but I think I am getting there. I do realize there are people out there in much worse conditions and I hate to whine so I usually keep my feelings to myself and it is starting to wear on me. Anyone??

[Ruth Cuadra]

Hi, Melissa.

Welcome to Marrowforums. You'll find a lot of knowledgeable and compassionate people here, so please feel free to ask questions or just vent. It's hard to keep all of this to yourself. Often, with aplastic anemia and other bone marrow diseases, you may look just fine to others even if you feel poorly so you might feel pressured to be more active and upbeat than you can.

Since it's been a year since your ATG treatment and you still have low counts, the doctor is probably thinking that if you scale back your cyclosporine your bone marrow activity might pick up a little to raise your counts. As you will read in this forum, the patients who taper off cyclosporine VERY slowly do best. Often doctors will plan a taper to be finished in 3 months or so, but a year-long taper might be more beneficial. Another option might be a second round of ATG. Has your doctor mentioned this possibility?

Are you working? Can you exercise at all? Anything you can do to maintain a "normal" life and stay connected to the world, should help diminish feelings of depression. But it is also ok to talk to your doctor about getting help with excessively sad or pessimistic feelings.

Hope this helps.

Regards,
Ruth Cuadra

[Hawaii Bill]

Aloha Melissa,

I read your message and I felt like you were reading my mind.

My own life goes from the highs after a red blood transfusion, when I feel energetic and mentally sharp, to the lows just before a transfusion, when really nothing feels very good, and all I want to do is sleep. And I really have to watch my irritability, especially around my family.

Ruth's point about looking ok but not being all that ok is spot on, too. I vacillate between recognizing that this disease DOES limit me to chastizing myself for letting AA run my life. I am not "out" to most people I work with about this, so a lot of the time I feel like I'd like to tell people why I am not always all there; but I hate to make excuses, and I don't want pity.

My first treatment was very successful for about 6 months, then I relapsed. Let me tell you, when my hgb was up to 12, I felt like SUPERMAN! Like you, I am facing the next round of treatment.

Have you considered a clinical trial at NIH??? My counts are not low enough to qualify, but yours might be. I know I'd feel a lot more confident about the second round if it was at NIH.

Bill

[Missyblue]

I would also like to get snoopy and see if you both, or anyone reading this, works full time? While off, my job went from five 8 hr days to four 10's. I have noticed that I am in a daze some times and my short term memory seems diminished. Is this common that you know of? My Hematologist has only had a couple of other simular cases and cannot answer some of my questions. I am really nervous about going back to work and not being able to learn new policies and programs etc. And I am really going to miss nap time

[paulaespada]

Hello Melissa,


Just November 2007 my husband started to present symptoms.

But only Last June doctors discovered AA.
He immediatly went throut ATG treatment to which he reated very well.
Now he is on cyclosporine (150 mg/day).
His blood cells are all raising but he he still very tired, his memory is not the same (since he translate books he is not able to to what he did before in terms of performance) and I believe he is starting to be depressive.

But I want to tell you that of course both of us prefer to don't have to deal with this situation. Anyway, AA is not dramatic as it were in the past and many patients life normal lifes.

I'll look forward to hear more about you.

Wishin you all the best.

[Missyblue]

Thanks for the replies, I guess all of our symptom are similar in our own ways. I have not had blood in awhile and I really want the burst of energy that it gives, my Dr. is holding off and waiting for my bones to do it themselves. Plus she is worried about my iron levels. I am going to look into the NIH info and also one of my nurses at the infusion center told me about clinical trials in Bethesda MY. They are I guess ongoing and you have to travel back and forth but I believe it is paid for. I am tired of being tired and having no ambition and being airheaded. I know I can beat this, maybe not totally but hopefully mentally anyway. Bill, you sound so upbeat that I admire you. I was upbeat for most of the year but I think this is wearing in me. I do not complain to those around me and I try to act as normal as possible. But I hear comments on being forgetful and dingy. I wish they understood it is not something I choose to be. Never wanted to play the dumb blond. Sorry I am rambleing on and venting but I do feel a little better for it. Thanks

[triumphe64]

This is the best place to start.

http://clinicaltrials.gov/ct2/home

[Lisa V]

Melissa, it would help to know a few more specifics about your situation. What are your current counts? Have you had no response to the ATG or is it just moving too slowly for you? How much cyclosporine are you taking, and why has your doctor decided that now is the time to do a taper? The answers to these questions will influence your decision about what to do next.

It is a very slow process. My husband is about 2 1/2 years from his last ATG and his counts have not yet returned to normal, but they continue to gradually improve. If you're having low Hgb issues, have you ever tried any EPO drugs (Procrit, Epogen, Aranesp)? High doses of cyclo can make you feel tired and interfere with clear thinking too.

[Hawaii Bill]

Hi Missy,

Are you taking any Potassium or Magnesium supplements along with the Cyclosporin?

My hemo has had me on them from the beginning, and I think they do help with the energy levels and mental outlook. In fact, I just got a copy of my medical records and logged all my counts into a spreadsheet. I noticed that whenever the hemo has measured my magnesium level, it has been right on the lower limit of "normal". Working on the assumption that it probably dips below normal between tests, I added a little more magnesium to my daily regimen, and I think it may have made a difference.

Of course, I only make changes that I think will do no harm. I will tell my hemo about it this week just to be on the safe side.

As for waiting on transfusions, I used to hope for my hgb to be 7.9 or lower whenever I was getting really low, so I could get that blood and feel better. Now I really try to learn the live happily when the count is low, hoping to minimize iron overload.

Have you ever considered that your "airheadedness" might be because you are also distracted by this disease? Imagine what your thinking would be like without this constant "threat"... it's easy to not be "all there" under the best of circumstances!

[triumphe64]

I was told to use magnesium oxide. It really helps, but it took a couple of months to really start working. I take two 400mg tablets a day.

[Connie]

Hi Missy, I read your posts. I was 45 at time of diagnosis. That was in 2000. I was treated with ATG, then ALG, as I was only in a very short remission with ATG. Had many tx's. Was on Cyclosporine. Now, I am in remission. Took a long time to get there for me. I too was very healthy before diagnosis, as I think most were.
One thing, take it slow and easy. One day at a time. Moment by moment. I do remember being sooo tired and sick and tired of being sick and tired. But, time heals. And I know it is hard for family and friends to understand how long it takes to get back to normal. I mean, it was even hard for me to understand that.
I stopped working when diagnosed. I still don't work at this time. For me, naps has been a new lifestyle and my body insists on it. But finally, I am napping less and that is great! Also, my memory went caput! Short term mostly. So I thought I should do something about it. I went in for speech and occupational therepy. It really helped! Everyone uesd to tell me that I didn't remember anything (they were pretty much right), but I don't hear that so much anymore. And another thing is that I got very depressed. I talked to my Dr. about it. She put me on antidepressants. That really helped too. I also was going to a Cancer support group. There are similarities in treatment and side effects. I made friends with a great group of people who understood me and how I felt and now I help them.
So I hope that any of these ideas might help you too. Best of luck!
We have so many similarities in age, treatment types, results, etc.
Connie

[Missyblue]

My hematicrit is staying at 26ish, my platelets are staying in the low 40's, white count is about 2.1+/-.
My Dr. said that staying on the cyclosporine (down to 100 mg modified 2 x daily) to long is not good for the kidneys and liver. My liver seems to be OK (but overloaded w/iron) but my kidneys are stable but not normal.
I see my hemo on Friday and I will ask her about the magnesium and potassium, for some reason she said I was not a good candidate for procrit and the like. She did do a retic(?) something bone marrow blood test and it was 1.9, she said this was good. I realize stress probably has a lot to do with my brain functions, and it is something I have to learn to deal with.
My employer stated that when I come back he will need me to be totally functioning and reliable. I need to be able to "hit the floor running" I wish I could promise him that I will not need anymore ATG's or ? I am rambling again. I am going to look at the clinical trials web and talk to the hemo. missy

[Missyblue]

My hematicrit is 29 and Platelets are 69!! WoooHoooo

[DomesticDeeva]

Hi Melissa,
Congratulations on your improved counts!!!
I'm so glad you came across this website. It has proven invaluable for anyone with VSAA or who knows someone with this disease, not only for the in depth information it provides, but also for the mental support. I like your saying about "learning to dance in the rain instead of waiting for the storm to pass." So much easier said than done and I too feel the exact same. Our 11-year-old daughter was diagnosed with very severe AA on Valentine's Day 2008. The first six months were filled with ER visits, extended inpatient stays, two bone marrow aspirations, countless clinic visits, infections, several initially daily transfusions of red blood cells and platelets, daily neupogen injections, and other immunosuppressive drug treatments. Here we are almost 10 months later and her counts have improved overall. She's not in remission, but better. And has been transfusion free for the last five months - woo hoo! She continues her immunosuppressive drug therapy and we are optimistic as we are for you too. You and your family will remain in our prayers. I'm not going to say "hang in there" as it sounds so cliche, but instead, feel free to vent any time and please do not hesitate to confide in someone you trust whenever you are feeling "down".....and be frank with your oncologist....there could be additional help available to you and you need only to voice your concerns as often as you feel comfortable in doing so.
God Bless,
Shana

[Missyblue]

I am keeping your daughter in my prayers also. As of 12/15 My hem is 32.2 and my platelets are 69, they did go up into the 70's but dropped again. My Dr. is weening me off the Cyclosporine and I am taking one 100 mg every other day. Wish me luck! I read some where that children will often times grow out of it, I hope your daughter does. I am curious as to when she had her last booster or immune shots. I had a booster (even thought I am in my 40's) because I know that I did not have them when I was young, and I had started working with developmentally disabled adults and worried about what was going around because they are always sick. I keep wondering if this had something to do with that, and the fact that children get this SVAA more often then adults. Happy Holidays and I am wishing you and yours the best of Luck!

[DomesticDeeva]

Hi Melissa,

So good to hear from you and thank you for your prayers. Glad to hear you continue to do better. Haylee still takes 400 mg of cyclosporine per day. In response to your booster q, her oncologist refrained from any of those since diagnosis. The only immunization he insisted on was the flu immunization and she does continue with anti-pneumonia breathing treatments once per month. Have a wonderful holiday season and feel free to contact me any time at domestic.deeva@gmail.com

Sincerely,
Shana

[Missyblue]

I am now officially off the Cyclosporine as of today 01/07/09. My counts are: Hemoglobin is 11.6, platelets 63, and whites 2.3, and nuets are 44.5. Wish me luck!

[Ruth Cuadra]

This is great news, Melissa! Did you have any sort of "final withdrawal" symptoms when you stopped? Hope your counts are holding well.

Regards,
Ruth

[Missyblue]

No withdrawals at all, my counts are staying at a steady low but at least they are not dropping. I also just tested positive for PNH, I need to read up on that and see what it is. The Dr. said I should have no reason to worry and that I am doing "OK". Melissa

[jobra818]

Hi Melissa,

Congrats on your counts and I hope your health continues to improve. I am new to the site but a long time sufferer myself so I had a bit of reading to do to get caught up on your situation. I hope things continue in the right direction for you. In June I will be celebrating my 21st anniversary battling AA. It has had its ups and downs but we can all get thru it. I know for me I just hope they stop finding other things to diagnose me with. Continued good luck.

[michelle_lapuz]

Hi brandy:

It is nice to see folks who are doing well after 20-years of AA. By the way, how did they diagnose you with ITP after a diagnosis of AA? All my numbers are in the normal range except for those darned platelets that hang out around 15 consistently. I don't have platelet transfusions any longer but am extremely careful when the petichiae and bruising make appearances....

I am glad to see all the good news of late for most on this site, it is encouraging!!

Michelle
AA 10/2007 ATG 11/2007 RBCs returned 08/08 still waitin' for platelets

[jobra818]

Well Michelle that is a bit of a crazy story. It was 1992 and I was into my 4th year with AA, doing rather well, and I was taking oxymetholone at that the time. I was a pretty good athlete and competed in many sports at the time. My counts were running pretty normal: roughly hgb 15, white 4-5 and platelets around 120's. I went to a rural high school where the elementary was in the adjoining bldg and we had plenty of access to see the younger children. I was visiting with one of the small kids in the lunch room and found out her brother was home with the chicken pox. I at this time had managed to not have had the chicken pox yet in my life and the funny thing now looking back was my doctor at the time was thinking about getting me the vaccination but it was new and risky. There was a chance that I would get them from the vaccination. Well I helped my doctor with the decision and managed to catch them through the little girl. I was out of school for two weeks and miserable. A few months went by and my platelet counts started dropping while everything else stayed the same. Dr. Brian Wicklund of KC Children's Mercy, my wonderful doctor back then, decided to track a syringe of platelets through my body to find what was killing them. A radiated amount of platelets was administered and found that my spleen and liver were the culprits. Unfortunately for me the liver was doing the most damage so no action could be taken with surgery. That is when I started taking cyclosporine. The theory is that after the antibodies in my body fought off the chicken pox my body continued to make a large amount of the antibodies so they decided to go after my platelets and destroy them. It took well over a year to get the platelets under control.