Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
Hi all,
Haven't been on line for a while due to another illness.
Today is my 2 years since I commenced induction on May 12 and transplanted in August 12 and still battling cgvhd.
My oncs have thrown everything at this. I'm on 2 grams of cellcept ( mycophenalate mofetil) 100 mg of imatnib(TKI inhibitor ) 30 mgs of prednisone . I'm now commencing my 4 th month of treatment with no response. My skin is so tight that breathing is constantly restricted and my joints so sore that walking some days are impossible.
All this speed ups I can handle however due to severe immune suppression I'm getting very often. I've had three pneumonias in 6 weeks 3 different types. They almost lost me 2 weeks ago it all happened so fast within 3 hours I was critical.
My question I have now started on a long term antibiotic, posaconazole , anti viral and also septrin to try offer some protection. Does anybody have experience with being long term immunsuprresed trying to keep safe and what worked for you. Also I'm getting monthly ivig infusions to try boost my immune system.
I'm at the end of my wits at a place of throwing in the towel on all of the drugs as there is no improvement in either conditons or health.
Any advice
Majella
Haven't been on line for a while due to another illness.
Today is my 2 years since I commenced induction on May 12 and transplanted in August 12 and still battling cgvhd.
My oncs have thrown everything at this. I'm on 2 grams of cellcept ( mycophenalate mofetil) 100 mg of imatnib(TKI inhibitor ) 30 mgs of prednisone . I'm now commencing my 4 th month of treatment with no response. My skin is so tight that breathing is constantly restricted and my joints so sore that walking some days are impossible.
All this speed ups I can handle however due to severe immune suppression I'm getting very often. I've had three pneumonias in 6 weeks 3 different types. They almost lost me 2 weeks ago it all happened so fast within 3 hours I was critical.
My question I have now started on a long term antibiotic, posaconazole , anti viral and also septrin to try offer some protection. Does anybody have experience with being long term immunsuprresed trying to keep safe and what worked for you. Also I'm getting monthly ivig infusions to try boost my immune system.
I'm at the end of my wits at a place of throwing in the towel on all of the drugs as there is no improvement in either conditons or health.
Any advice
Majella
I am so sorry to know that you continue to have such difficulty. You are such a good and supportive friend to this community. I hope that someone with some experience of what you are dealing with re: the long term effects associated with gvhd will be able to offer you some practical advice. I am sure that the wear and tear of this ordeal has just been exhausting for you and your family - I pray that you will find relief soon and that better days are ahead for you.
All the best to you today, and always.
Robin
I agree with Lori. I am certain that your doctors are doing everything they know for you, but it may be time to seek another opinion, perhaps in the US. As Robin said, you have been so supportive to everyone else. Please be strong and make sure that no stone is left unturned.
Cliff
I have got an online second opinion from the states in relation to the cgvhd. They advised the treatment would be the same however they may have commenced aggressive treatment sooner rather that just pred in the beginning.
As our centre does not take part in clinical trials they also advised the imatnib I'm receiving is actually one of the clinical trial medications being used in a phase 2 study by the cgvhd consortium for my condition. The other medication being trialed is rituximab which I think jonb is commencing for the same type of gvhd. I will wait with anticipation to see how he responds. They also say I need to wait a minimum of 6 months on treatment for an effective response. But it's sooooooo hard the restrictions on my breathing is so bad.
I was never an alcohol drinker but it's sounding pretty attractive right now.
Thanks again and well wishes to all
Majella
It is available and has been offered. We have decided to give the immune suppression another 2 months as the weather changes in Ireland and cold and flu season goes to give the treatment a full 6 months to work. If my breathing becomes more compromised in the meantime we will start PCp sooner. My oncs fear is keeping the line which will need to be inserted infection free she is a great dr and tells it as it is but in a very compassionate way, she says it does not work for everyone. I'm grateful to hear of someone who went through this treatment for the same type of gvhd and it helped.
Thank you
Majella
If the treatment works for some, it might work for you. Do whatever you need to do to get better as long as it cannot harm you. Praying that there is something good out there.
Cliff
Not sure about the line, but I dd not have one. We used larger IV needle, which meant that I had to get a small painkiller shot before insertion because I'm quite needle shy by now. Still, I thought it was better than the line maintenance. Treatment was 2 days in row, ~3-4 hours each, every two weeks. The advantage of the treatment is a high tolerance since the medication is used on your blood when it is outside your body. My cGVHD issue is my eyes, not skin. I quit after 4 months as I did not see any improvement and it was little too much disruption in my life and felt like being pulled back into my "sick" days, just as I was getting into more "normal" life. However my onc thinks I gave up a bit too soon.
Photopheresis doc that treated me is very experienced with the treatment, so perhaps you or your onc should try contact him for a quick consult. I don't have his email unfortunately. He is from Scottland:
Dr. David Ward, UC San Diego, CA
http://doctors.ucsd.edu/details/11426
Good luck
Boris
As you know, I too have been fighting skin and joint related cGVHD and am having my second infusion of Rituximab tomorrow. A few weeks ago I was taken back up to 40m of Prednisone because I had a flareup.
It has eased slightly. Less scales on my legs and a small reduction in bruising.
My Onc here in New Zealand would like to see me get the treatment where they cycle your blood, but they don't have it here. I may get it in California.
My big problem is Squamus cell carcinomas that started up a year ago. I have a lot of smaller ones and a large one on my back that hurts and they are doubtful that they can get a graft to take on the cGVHD damaged skin around it.
I wasn't given the photo light treatment because of sun damage.
I wish you the best and know what it is like to be on public care in a country that has limited response.
What frustrates me is that when you first posted here, it was clear to me that you had skin and joint related CGVHD and it took your doctors a long time to agree.
Just have to do what we do......go through these things one day at a time.
Best wishes
Jon