9 months after ATG. woohoo!

[ssdavi71416]

Today was a good day for me! I am exuberant. My numbers are Hemoglobin 12.8, platelets 135 and WBC 4.6. The realization that I might have "normal" counts in two weeks is surreal to me. In August I was ready to give up on ATG treatment. My #s were really low and were not changing. I celebrated with the worst foods possible for dinner: angel food cake, Swiss cakes, salted peanuts and conversation hearts. I understand that I have a long way to go, but today I am accentuating the positive and eliminating the negative.

[Neil Cuadra]

You deserved that feast, Scott. I'm almost afraid to ask what you had to drink with it.

Congratulations!

[KMac]

Congratulations Scott, what great news! I can relate to your elation and the struggles you have been through. It sounds like you and I have been on very similar paths with SAA. I too was very slow to respond to ATG, but I'm also doing much better now. This is a mysterious disease, it seems there are more of us slow responders out there than the literature indicates.

I wish you the best of health in the New Year. Keep up the fight!

[ssdavi71416]

Neil and Kmac

Thank you for the comments. Just water to drink. Have to keep the kidneys healthy. Creatinine levels remain borderline high. Kmac it really is uncanny how close our journey mimics the others.

[Lisa V]

Congratulations, Scott, that is excellent news! I agree there are a lot of slow responders out there, and it's always good to hear from them when their counts do finally improve. It gives everybody hope!

[Lori Patrick]

Great news! Hang on to the good news and keep on keeping on! I agree that you deserve your "junk food" treat. Blessings, Lori

[Lbrown]

Great news! Congrats!

Deb

[Ellen McDonough]

Good for you! Keep up the fight!!!

[Karenish]

Well done you, i am another slow responder I had completely zilch for 10 months!! However, I never gave up hope because I actually felt better...then all of a sudden counts climbed 2 years next month is post Rabbit - all counts are normal except platelets which hover between 58 to 78....but I haven't given up on these either - Doc wants to start a years taper in March.....then I will feel very nervous! xxx good luck all xxx

[ssdavi71416]

My numbers dropped some this week. Hgb 12.0 from 12.8, patelets 123 from 135, WBC from 4.6 to 4.0. Is this type of drop a typical fluctuation?

[Lisa V]

Those are all within normal fluctuation, Scott. The fact that all 3 lines have gone down might make me alert, but unless you see 2 or 3 more consistant drops like that, I wouldn't jump to any conclusions.

[LoveRapheal1]

I have read so many horrific stories online. I guess those are only the stories that a fraction of people have told. What about the others who haven't posted their stories? It is nice to hear a success story once in a while. I must say that your success inspired me and I am happy for you.

[LoveRapheal1]

That is just wonderful. I am 38 years old and the doctor keeps telling me that my counts are low and that she wants me to get a transplant. It has only been 4.5 months and she said she has conferred with the specialist at Sloan who has arranged the transplant. This makes me uncomfortable. I do not want a transplant. I know I am blessed to have a 10/10 unrelated donor but I do not want to lose my hair, risk infertility or graft host. From my own readings I discovered it's best to get the bone marrow early within the first year if the ATG treatment fails if you are in your late 30's because it is harder in your 40's to have a safer transplant due to increased risk of graft host rejection. I also read that this goes into remission but often comes back which is another reason to get the transplant. My doctor said that some people live with this forever. That made me feel good. It is good to have better hopes for better cells I think. Doctors like that and people like you help inspire us and this is important I think.

Originally Posted by Karenish

Well done you, i am another slow responder I had completely zilch for 10 months!! However, I never gave up hope because I actually felt better...then all of a sudden counts climbed 2 years next month is post Rabbit - all counts are normal except platelets which hover between 58 to 78....but I haven't given up on these either - Doc wants to start a years taper in March.....then I will feel very nervous! xxx good luck all xxx

[ssdavi71416]

I know it is a tough decision. Would the Dr start the transplant before the 6 month mark on the ATG? Did you say that your neutrophile count was coming up? Are your platelets still increasing? Good luck with everything.

[Karenish]

Originally Posted by LoveRapheal1

That is just wonderful. I am 38 years old and the doctor keeps telling me that my counts are low and that she wants me to get a transplant. It has only been 4.5 months and she said she has conferred with the specialist at Sloan who has arranged the transplant. This makes me uncomfortable. I do not want a transplant. I know I am blessed to have a 10/10 unrelated donor but I do not want to lose my hair, risk infertility or graft host. From my own readings I discovered it's best to get the bone marrow early within the first year if the ATG treatment fails if you are in your late 30's because it is harder in your 40's to have a safer transplant due to increased risk of graft host rejection. I also read that this goes into remission but often comes back which is another reason to get the transplant. My doctor said that some people live with this forever. That made me feel good. It is good to have better hopes for better cells I think. Doctors like that and people like you help inspire us and this is important I think.

What I would do if I was you, would be to wait until 6 months and then ask for another bone marrow biopsy, this will give your consultant and idea if there is any improvement in your marrow. If there is, like me, I had a tiny bit of improvement - my doc said, It wont do us any harm just to wait and see, that was like big hope, i then reduced the stress in my life, started to eat organic stuff and drink loads of water, and as the months went buy my transfusions got less and less - as I say month 10 it all started to go up! they fluctuate now (the counts) but everyone's does, just we notice coz we are having bloods done every week.

[LoveRapheal1]

I'M SO HAPPY FOR YOU. I HOPE YOU LIVE YOUR LIFE TO THE FULLEST.

Originally Posted by LoveRapheal1

That is just wonderful. I am 38 years old and the doctor keeps telling me that my counts are low and that she wants me to get a transplant. It has only been 4.5 months and she said she has conferred with the specialist at Sloan who has arranged the transplant. This makes me uncomfortable. I do not want a transplant. I know I am blessed to have a 10/10 unrelated donor but I do not want to lose my hair, risk infertility or graft host. From my own readings I discovered it's best to get the bone marrow early within the first year if the ATG treatment fails if you are in your late 30's because it is harder in your 40's to have a safer transplant due to increased risk of graft host rejection. I also read that this goes into remission but often comes back which is another reason to get the transplant. My doctor said that some people live with this forever. That made me feel good. It is good to have better hopes for better cells I think. Doctors like that and people like you help inspire us and this is important I think.

[LoveRapheal1]

Thank you and that is exactly what I will schedule with the doctor.

Originally Posted by Karenish

What I would do if I was you, would be to wait until 6 months and then ask for another bone marrow biopsy, this will give your consultant and idea if there is any improvement in your marrow. If there is, like me, I had a tiny bit of improvement - my doc said, It wont do us any harm just to wait and see, that was like big hope, i then reduced the stress in my life, started to eat organic stuff and drink loads of water, and as the months went buy my transfusions got less and less - as I say month 10 it all started to go up! they fluctuate now (the counts) but everyone's does, just we notice coz we are having bloods done every week.

[FlowerFallen]

Hi,

I have been diagnosed with AA (just this past Tuesday) and am flustered and confused with all of the information out there regarding this disease. I am on ATG treatment (I was before the diagnosis as chemotherapy for a non-malignant tumour had lowered my BCC) and am wondering if anyone else has experienced major bone pain with this?

I meet with a Hematologist next week to discuss my diagnosis more thoroughly (originally came from an Oncologist); any tips on what I should expect him to do/ask during our initial meeting?

Thanks

[Ryan Jay]

Hi Flower,

Bone pain was a part of ATG for me, especially in the hips and legs. Again, was it ATG? I was on six or seven medications.

Expect that you will feel awful for at least two months. I received ATG in August of 2010, and it wasn't until November when I started to come around.

I remember not being able to walk without pain. Stairs were a killer...even sitting up hurt.

I would recommend that you bring a wingman/woman to the meeting with the hematologist because you are out of it.

[dfantle]

Scott, congratulations!!! THIS IS WONDERFUL NEWS!! So happy for you!!

[LoveRapheal1]

Originally Posted by ssdavi71416

I know it is a tough decision. Would the Dr start the transplant before the 6 month mark on the ATG? Did you say that your neutrophile count was coming up? Are your platelets still increasing? Good luck with everything.

It has been 4 months and 3 weeks (about 5 months) and my platelets rose from a 7 to a 13 since 25th of last month. I haven't needed a blood transfusion since 2-12. My primary told me I can wait 9 months and that he sees some hope in my neutrophils whereas the other doctor keeps pressing me to get this transplant. It is a small increase in my platelets but I haven't needed a platelet transfusion in 1 month. I started this increase platelet juice diet I found on line. I can give you the recipe if you like. It may have helped. Either way all I can do is have faith and hope as you did. Thanks and good night.

[LoveRapheal1]

Originally Posted by FlowerFallen

Hi,

I have been diagnosed with AA (just this past Tuesday) and am flustered and confused with all of the information out there regarding this disease. I am on ATG treatment (I was before the diagnosis as chemotherapy for a non-malignant tumour had lowered my BCC) and am wondering if anyone else has experienced major bone pain with this?

I meet with a Hematologist next week to discuss my diagnosis more thoroughly (originally came from an Oncologist); any tips on what I should expect him to do/ask during our initial meeting?

Thanks

I'm not an expert but I was in great shape before this and I suffered from arthritis after ATG and it hurt. It will go away after the ATG tapers but you may feel it in the cold and want to dress super warm. Stay in and avoid infections. Don't eat food from the ground right away. The doctor gave me oxycodone in case I needed it. I wouldn't suggest this medicine for anyone because I heard it could be addictive but there were times when my toes would get stuck and freeze. It hurt and I had to take it but it did go away and it will so not to worry. You may want to ask the doctor about medicine. I wish you well. The nausea and pain will go away. Use a thermometer and check for a fever. IF it hits 100 go to the hospital right away and don't wait. IT is VERY important for your safety that you do so. I'll help you in any way I can because I experienced that too. Keep in touch Jennifer

[LoveRapheal1]

Hello Scot

Yes my platelets are increasing. I haven't needed a transfusion since January 25th 2013. They rose from a 7 to a 17. My hemoglobin and blood are still dropping. So are my white cells. I just needed two packages of blood this weekend. I decided that April 8th will mark the 6th month and that I should schedule a transplant. I have two unrelated 10/10 donors. I don't know what to do. I just know that the only real cure for this disease is a bone marrow as far as I hear. I am 38 and may not have the same coverage or opportunity since I am 38 and have coverage through work. That may end in September so I am not sure what to do.

Originally Posted by ssdavi71416

I know it is a tough decision. Would the Dr start the transplant before the 6 month mark on the ATG? Did you say that your neutrophile count was coming up? Are your platelets still increasing? Good luck with everything.

[ssdavi71416]

That is about how my platelets increased. I had my ATG April 5th of 2012. On August 15th they weere 17. My Hgb was 7.9.

Soon after everything started to go up. It was a slow process. Monday my platelets dropped to 111 from 133 and my WBC went down to 2.2 from 4.6.

It sounds like you may be on the way up. I understand the thought of maybe going through BMT although it can be a tough process.

Scott