Hi to everyone

[AnnyaT]

Hello my name is Annya. I live in a small village on the west coast of Scotland, about 40 miles from Glasgow. I am 59 years old and have been having problems with my blood since last September. It has taken a year but I have now been officially diagnosed with AA. I went to the GP originally because of consistent bruising all over my body. The GP took blood and sent to the lab for testing.
Next thing I knew was a telephone call from the local hopsital asking me to attend the haematology day bed ward the very next day. I was advised that my red blood count was 7.4 and platelets were 5. Not sure of white blood count. After a lengthy discussion the consultant suggested this anomoly had occurred due to recently being prescribed Asacol for colitis. Immediately stopped taking this medication. Returned the following week with similar results and therefore received two units blood and platelets. Since then I have been getting transfusions of blood and platelets every week. My counts have now risen to the dizzy heights of 10.1 and 11 for platelets. Not sure of white blood but will check at hospital next week. In December of last year I was prescribed Cyclosporin which I have been taking ever since. In May my consultant referred me to the Beatson Cancer Hospital in Glasgow to consult with a AA specialist for the West of Scotland. I was advised that [i] ATG was the next step. Went into the Beatson for another bone marrow biopsy and to have a hickman line fitted for the ATG treatment. Unfortunately I then acquired an infecti on in the hickman line and had to have antibiotics (via the line) and stay in hosp for a further week. At that time I advised one of the doctors that a mole on my leg had changed appearance and asked if that was caused by the cyclosporin. He said not but referred me to a dermatologist locally to my home. To cut a long story short, I was then diagnosed with a milignant melanoma which was cut out immediately. I was then told I would have to go to another Glasgow hospital and have further surgery to ensure all the melanoma was removed. In the meantime I have been back to the Beatson and told they cannot start ATG until I have had the surgery and the wound is healed. I am sure this will not be until early next year so back to the local hospital for weekly transfusions. About 3 weeks ago started ExJade as iron levels are very high after so many transfusions. And so it goes on.......... I try to keep happy, but am not able to go out too far because I get so tired when I walk just short distances and some days I just feel I want to be in bed and feel pretty miserable!!! This is not like me as I have always had so much energy and have always been a very positive person. I have been told that when I do get my ATG I will be in hospital for about 3 - 4 weeks. I have read a lot about the therapy but would appreciate others views on how they felt when receiving the treatment and after. Has anyone experienced lumps in their groin, under arms etc. perhaps caused by the cyclosporin. They seem to come and go all the time. Also seem to get bladder infections quite frequently. Look forward to hearing from you all.

[Sally C]

Dear AnnyaT,
All I can offer is when my husband was on Cyclosporine he didn't have any lumps or bladder infections.
Mainly I just want to tell you how sorry I am that you are having to deal with all of this.
Take good care and God Bless,
Sally

[AnnyaT]

Dear Sally C
Thanks for your reply. I really didn't want anyone to feel sorry for me; if I gave that impression it was an error. I have had a lot of bad luck but I feel blessed that my family are so wonderful and close to me too. Although this AA is unpleasant I am not in pain or too much discomfort and I feel as though things can only get better, but if they don't, I know with my family's support I will get through it. Just a little funny story. After the biopsy on my leg, I received notification of skin cancer by letter from the hospital. I read the letter and my husband and daughter were in the kitchen with me. I said to them both "now look you two, I do not want you to worry about me - I will be fine". They looked at each other and burst out laughing. My husband who was falling about the kitchen hugged me and said I sounded just like my mother when we were on holiday with her some years back and we all thought she was a drama queen (bless her). I thought I was being so very profound and sensible. So there you go.............. Take care AnnyaT

[Neil Cuadra]

AnnyaT,

Your story of "one thing after another" reflects the types of delays that frustrate many AA patients. All these interruptions have kept you from starting the ATG that could bring your blood counts back up. It's paradoxical that you can't get better until you are well enough for the treatment, but that's how it goes for many patients.

You've got the right attitude, and you're headed in the right direction -- if you can avoid turning into your mother!

[Sally C]

Hey again Annya,
You did not at all sound like you wanted sympathy and I didn't mean to sound like I was feeling sorry for you. I just wanted to give you some support.
As Neil said, you do have a great attitude and wonderful family support. That goes a long way when you have to deal with things like this - as does a good sense of humor which you and your family seem to have.
God Bless - I wish you well,
Sally

[ssdavi71416]

Annya

You really have been through a lot. Your positve attitude is inspiring.

I would recommend looking at the thread in marrowforums for more info on the ATG treatment.

http://forums.marrowforums.org/showthread.php?t=1868.

Cyclosporine can produce many adverse reactions and is very hard on the kidneys. I have my cyclosporine level monitored every time I go for blood work. The doctor monitors the trough level and maintains the level between 100-200 ng/mL.

My ATG experience

You want to be in a hospital where they are familiar with the ATG treatment. My "local" hematologist sent me to a center where they are much more familiar with the ATG treatment. The daytime nurse waited for the night nurse to start the treatment because the night nurse had completed the treatment many times.
For me ATG treatment was 5 days in the hospital. They will insert a main line of some kind (probably). I received methyl prednisone and Benadryl as pretreatment to receiving the ATG daily. These medicines will help to minimize any reactions to the ATG.
There is a possibility of respiratory issues associated with allergic reactions to the ATG so they keep a close watch on you. ATG is dispensed in an IV bag. The infusion is performed over 6 hours to 16 hours each day over four days. (I have read about some cases where the treatment took longer because of complications) The first day I had some chills so they slowed the process down. That is why it took 16 hours to receive the ATG. So the process is similar over the four days. The nurses will monitor temperature, blood pressure, respiration and other vital signs to make sure you are doing OK with the treatment. They also took blood samples every day. I also started taking the prescriptions while in the hospital.
I tried to walk around the ward as much as possible during my treatment time.
I was on a ward in the hospital for bone marrow transplant. My neutrophil count went way down while in the hospital so I was considered at risk for infection.
I felt pretty good for the first week but began to feel bad after that first week. Mainly I had no energy. This was directly related to red blood cell levels. I had levels measured every 3-4 days initially.

Scott Davidson

[Lisa V]

Originally Posted by AnnyaT

Has anyone experienced lumps in their groin, under arms etc. perhaps caused by the cyclosporin. They seem to come and go all the time. Also seem to get bladder infections quite frequently.

Annya, none of these things are commonly associated with cyclosporine, but they could have to do with having a low white cell count. Try to find out what your white count is, and specifically what your neutrophil count (ANC) is. That will tell you a lot. Cyclosporine does suppress some of the lymphocytes, but doctors say that shouldn't pose a major problem as long as you have enough working neutrophils. When the neutrophils get low and you become neutropenic, however, you become susceptible to a wide range of infections and have to take precautions regarding what you eat, who you come into contact with, etc.

Hospitals seem to vary quite a bit as to how long they like to keep you in for treatment. Ours let my husband out the day after his ATG infusions were finished, but I've heard others say they were held much longer for observation. Part of it may depend on how you respond to the serum too.

Take care, and keep laughing.

[Karenish]

Hi Annya,
I am in the UK also, down in Shropshire. I am about 18 months post rabbit (ALG) one of the last in this country to be dealt rabbit as opposed to horse.
Cyclosporin knocks out T cells, T cells are our first line of defence in skin cancer, which is why when we are on it we are told to stay out of the sun.
Now for my experience of ALG - in hospital for about 3 weeks, they prepare your body a bit like a bone marrow transplant so you end up with nothing - they give you platelet and blood transfusions throughout - they then give you a test dose of the atg - just to make sure you dont react.
then they infuse like they say - I got flu like symptoms the first night, with teeth chattering and feeling cold even though I had a fever. But i was laughing because it looked funny, then nothing for a few days, then bright red palms, then an itchy rash - both sorted with piriton on hydracortisone - then a few days late another rash again dealt with. After the three weeks sent home....no further problems and continued having blood and platelet transfusions for 10 months!!! all of a sudden counts began to climb and I became transfusion free. counts currently hb11, plates 55,neuts normal and whites normal. I have a ferrous count of 1500 but stopped taking exjade as I suffered some eye issues which we are not sure if they are related or not. Look up my name and you will see the posts as I patiently waited and got frustrated. Try to keep positive, we all have a different experience of this stupid disease. But live life to the full as much as you can, plan for the future and use this as much as you can - but DONOT go on to the internet too much, there is some scary stuff out there and a lot of it is over 20 years old. xx good luck xx

[MichyJ]

Hi Annya,

So sorry to hear that you have been through such a tough time lately. I just wanted to give you some hope. I was diagnosed with SAA at the age of 10 yrs old and lived on transfusions for years. I have had the horse ATG and the Rabbit ATG. Everyone has a different reaction to the ATG and its probably best to take it one day at a time when you have the ATG. I am 43 yrs old now and I ended up having an unrelated bone marrow transplant in 1996.

I know that my story is different...everyone has a different story and every patient with AA is different. I was just at a Patient Education day for AAMAC in Toronto and I met many people who took the ATG and it worked for them and they are able to lead productive lives.

Annya, my advice is to take it one day and one week at a time. I wish you all the very best and I will be sending good thoughts your way.

Michelle
Canada