What to expect post ATG

[TASHMAC]

My doctors are recommending that I make a decision regarding my treatment options quickly. At this stage I am thinking I will go with ATG as I am an only child so BMT worries me.

I have a couple of questions re ATG:

a) after the 4 or 5 days in hospital how do most people feel? I have 2 small children (18 months and 3). I am wondering what my energy levels will be like

b) when do most people cease needing transfusions?

c) how regular are the transfusions post ATG?

I know ATG is different for everyone but the more personal experiences I know the more prepared I will feel.

Re BMT where do people consider the best place for this in the States? I am currently seeing the guys at Cleveland Clinic in Ohio.

What do people think about BMT? Am I right to be as concerned as I am? I have read that mortality rats for my age group are 10 to 20% (I am nearly 36) and this just does not seem like the kind of odds I want to play around with given my little girls.

[Ruth Cuadra]

TASHMAC,

I have been following your posts as I was in a similar situation when I was diagnosed with aplastic anemia. I was 41 and clueless that I was anything more than tired from working and taking care of my family. Because my blood counts were seriously low at diagnosis, I was rushed to ATG treatment. Afterwards, I did not feel "sick" but had very little energy for a long time. I slept a lot and couldn't do much more than take care of myself. Luckily, my children were older (11 and 14 at the time) so my husband was able to provide most of their care and do all of the housework. It took about 6 months before I was feeling close to normal and my blood counts starting coming up substantially. It took nearly a year for my platelets to get up to 50.

Overall, I would say that ATG is not fun, but not painful and certainly very survivable. You will need help given that you have such young children. You will also need time off work to recover and to avoid potential sources of infection that accompanying being in the workplace.

To answer your specific questions:
a) I think most people feel very weak after ATG. Of course, everyone is different and people recover at different rates. Your general health apart from aplastic anemia and nutrition will play a big role in how you feel as you recover from ATG.

b and c) I had very few whole blood transfusions after ATG, but needed several platelet transfusions. Again, it depends on how fast your counts come up. Most people are on several different medications in addition to cyclosporine (for example, prednisone, antibiotics, antacids, anti-hypertensives). You will be monitored very closely, so expect frequent trips to the hospital for blood counts and other tests.

You are certainly justified in your concern and worry about having a BMT. What do I think about BMT? Well, mine saved my life so I can't be other than an enthusiastic supporter. My diagnosis was changed to MDS about 18 months after my ATG. I probably had MDS from the start but my bone marrow was so empty they couldn't really detect any abnormalities until I got some recovery from ATG. I know there are many variables that go into achieving a successful outcome. For me, there were three keys: a perfectly matched donor (my siblings matched each other, but not me; my donor came from the national registry), a top-notch transplant facility (City of Hope near Los Angeles), and the care of my husband who was with me every single step of the way. I recently celebrated the 14th anniversary of my transplant and 16th anniversary of my original diagnosis with aplastic anemia.

You can read more about my history and treatment here. I am happy to answer any questions about my experience.

Regards,
Ruth

[TASHMAC]

Hi Ruth thanks so much for your reply.

Having a forum like this is simply fantastic so a huge thank you to you and your husband.

I started ATG yesterday evening. My only side effect was a rash. It was just red and raised but was not itchy so that was good. They gave me some more benadryl and increased the steriod and that seemed to stop it and this morning it is no longer present. I am not sure what this second dose later today will bring but I am feeling very strong and positive.

My counts immediately prior to coming into ATG were WBC 3.3, HGB 7.4 (hard to know how accurate that one is as I had a rbc transfusion about 11 days ago my rbc at that time was 6.8) my ANC 290 and my plts 56 going into the ATG due to transfusion the day before but naturally around 15). This morning only about 3 hours after completing the first course of ATG my wbc is holding my hgb has dropped to 6.3 and my plts have nose dived to 13.

I was a bit disappointed to hear how rapidly the plts fell away as do not think I can blame this massive fall on the ATG.

Thanks again for your information.

[Hopeful]

Good luck with your treatment! The first day is usually the worst. So, you are doing great! You should expect continuous transfusions of platelets and RBCs during the ATG administration. ATG usually causes high fevers which burn through these cells. Also, your ANC will bottom out at some point during your hospital stay before rising again. All this is normal. Stay positive

[TASHMAC]

So far I think I have been relatively lucky with my ATG.

Only one night to go and the worse reaction has been a red rash (not itchy but looked a bit like hives). They increased the steroids and no more rash.

My counts tumbled after the first does, no real change after the second dose and a small tumble after the third: plts now 9, wbc now 0.61 and hgb 8. One more dose to go.

A plt transfusion today and then hopefully my bone marrow will pull its socks up.

I am feeling really confident and think I have found my new cocktail of choice, horse serum and steroids - 3 hours into the ATG treatment all I want to do is dance!!! So all in all things are pretty good.

[Lisa V]

Originally Posted by TASHMAC

.

I was a bit disappointed to hear how rapidly the plts fell away as do not think I can blame this massive fall on the ATG.

You can probably blame at least some of it on the ATG. I'm not sure what the biological mechanism is, but I've been told that ATG "eats platelets". That was cetainly the case when my husband did his treatment. He was getting Plts every 2 to 3 days while he was on the serum infusions, and at one point during his second round had to be transfused 3 days in a row. Of course he still needed transfusions for a while following treatment, but no more than once a week on the Plts.

Glad things seem to be going smoothly so far!

[TASHMAC]

9 days post starting ATG treatment and so far things seem to be going well.

My HGB is 11.7, my platelets are 10, so I had a transfusion today, my ANC 1270! There is obviously some artificial factors involved but it feels very positive.

I had some chest pain on my right side last night which was a little scary but they think that might be due to the steroids so I am going to start tapering the steroids tomorrow.

My doctor has mentioned nplate and promacta but I think it is too early post ATG to think about starting either of these drugs.

But very interested to hear other peoples views re nplate and promacta.

[ssdavi71416]

Tasmac

I am glad you are doing so well. The ANC number is fantastic. Hopefully you will be a very early responder. My hematologist did not prescribe growth factors because she said that they could suppress the marrow. I would really question the use of nplate etal in your treatment at this point. Ask about Amicar for clotting. The platelets don't hang around long, so Amicar can help you with platelets and clotting. Once you get to 20 for platelets everything changes for the better. Nose bleeds go away, brusing is reduced and the red dots go away.

Nplate hurts at the joints.

Scott