Update from Brian Gamley - 2011

It has been more than 20 years since I last wrote about my Neutropenia, and what a ride it has been.

Since then things have changed dramatically, some of it was not great, some not bad, and other times OK. It got to the point where I could no longer work and a large part of that was due to Neutropenia along with back surgery and ongoing infections, depression, COPD, heart problems and generally poor health all around.

In 1991 I had back surgery and of course an infection set in. As my wife Karen had also been involved with me and the Neutropenia Support Association, she knew exactly what to do. Knowing what to do and actually getting some action are two different things. I was out of it for about 5 days and during this time many calls were made to NSA, doctors, and Federal Health Ministers office etc. etc. To make a long story short I was put on 480ml of Neupogen (GCSF) daily and lo and behold my infection started to clear up. I have been on Neupogen ever since and have tried taking different dosages, different daily rituals like 2 days on 1 day off, etc. and also taking Neupogen with other medicines.

I was off work for awhile and I went back to work after 4 months. I lasted about 3 weeks and then had a heart attack. I was then off for another 4 months. While recovering from these two problems I was still getting different infections. For those of you who know what Neutropenia is, you are already aware that some of the infections you get are horrific. I would get mouth sores as huge as quarters,(sometimes 8 or 9 at a time), anal sores, and blood poisoning, cellulitis, etc. Although the Neupogen helped it could not control my infections. This does not mean it doesn't work but for me it just somewhat alleviated the number of infections.

One of my main concerns is the number of skin sores I seem to get. They come on every part of the body and are sometimes extremely sore and raw. When they do heal(?) they leave a black area as if the pigment of my skin will not grow back. These are very unsightly and as some of you may know, people tend to stare. I am not a freak. I have a disease. SORRY. These spots finally turn from black to a slightly paler colour and they never seem to go away and are very noticeable. My arms, legs, buttocks etc. are covered in them. This is just another thing; I have to learn to say "Oh well that's life" and just carry on.

I have had numerous hospital stays which have continued for 20 years. Through all this I was treated with a tremendous amount of different medications as well as once again going through the whole gammit of seeing an uncountable number of doctors and specialists.

My infections got so bad and re-occurring so much again, even though I have taken GCSF daily for 20+ years, that I was put on doses of prednisone to go along with it. Even this wasn't working and I just thought that after a certain amount of years it was like most medicines and your body just became immune to its effectiveness. .

There is one thing that people need to know; Neutropenia does not just affect the patient but it affects the entire family. Needless to say my life has not and never will be normal and it is your family that sees all the suffering and the only thing that keeps a person going is their loving family who stands by you. Family outings have to be cancelled, social outings are scary because of risk of infection, many doctors appointments are made which make planning things hard, you miss so much of your kids growing up because you are sick, and THEN what comes into play, self-pity.

Through the last 14 years I have had tremendous doctors who never gave up. In fact when I moved to our present home in Pinawa, I was lucky enough to see a doctor from South Africa who happened to know a lot about Neutropenia. This was a tremendous asset to me just knowing that I had a doctor who knew what to do, and just how quickly things can get very serious. He has been a godsend to me and my family.

My different doctors at the Manitoba Cancer Care have also been terrific and understanding as well as their staff. They have always gone that extra mile for me and I will never forget all the experimental treatments I received only to try and relieve some of my pain and help keep infections bearable. May God bless all my doctors as I will never forget the things you have done for me as well as my friends and especially my family.

In October of 2009 they had considered (only) a bone marrow transplant but they figured I would be more at risk than the possible advantages in the long run. Seeing as how this did not appear to be an alternative my oncologist, Dr. Matthew Seftel, suggested I try a drug call IVIG which is immunoglobulin. This had to be approved on an experimental basis only by the Federal Health Department. I was given one year.

I can tell you that to date this medicine has been marvellous. It not only keeps my infections to a minimum but when I do get an infection the medicine seems to attack it immediately. It ha s changed my whole outlook on life. I am not saying that I am healed or cured but to me it is a miracle drug with regards to Neutropenia. It is, however, very costly and is most likely cost prohibitive after the one year. I am going to try and enjoy the one year on the medicine as it treats my Neutropenia greatly. It is like an entire new life.

I take the medicine by way of IV drip and the treatment takes about 5 hours. The time flies for me as I know what it is going to be doing and the staff at Pinawa Cancer Care are terrific and luckily my GP, Dr. Richard Van Gend is one of the doctors who took the training to be able to treat people with cancer and should I say "ODD" or different diseases .

We are starting something new now. I had been receiving 100mls on IVIG every three weeks but I have since been cut back to 90mls once a month. It seems to be quite a coincidence, but right now I have a fair size canker in the cheek of my mouth. I cannot say if it is because of the extra week between treatments or just luck of the draw and I guess time will tell.

In closing I can only thank, to a great extent, all the Doctors who do the research and never seem to give up on people like me and to all the doctors who treat me. It is to be hoped that IVIG can become available to more Neutropenia sufferers someday and I know the professionals are working on it.

Thanks to all and if you are anything like me, we just try to keep smiling and pretend everything is alright!!!!