Updated ....
I am the sister of a fantastic 53 year old man who has Acute Myeloid Leukaemia.
It was diagnosed in May 2002 after a series of personal challenges, including the sudden and unexpected death of his brother-in-law who was not even 40! Initially he was treated initially with chemotherapy but ultimately in December of the same year my brother had an allogeneric bone marrow transplant. He made a fantastic recovery, he found a new job and all was looking good.
For 6 years he was free of the disease, and even made a miraculous recovery from a seemingly unrelated stroke, after which he lost his job .......
Despite this he fought back. Even highly sceptical medical folk described his recovery as a miracle. He retrained and found a job he came to really love. He really was in his element, life was good and typically he set about raising funds and supporting others who had been similarly affected!!
Sadly he has suffered a relapse. His leukaemia is back, this was confirmed in September and the chemotherapy has not worked as hoped, with 90% of cells still showing as abnormal. Whilst another bone marrow biopsy may show improvement it is unlikely and maintenance treatment is all that is left.
Yesterday it was decided he is a potential candidate for a clinical trial, headed up by Dr Morris. I do not have details as yet, my brother will be briefed on Tuesday and although he states he has nothing to lose he does need to understand the side effects and treatment plan.
He is the most wonderful person, he has given so much to society over the years, he has such a deep faith and loves his family so very much. If ever there was a travesty this is one, but never a complaint, never a why me or a what if .....
Has anyone out there been down the same 'medical road' - I would so love to hear from you.
Thanks so much xxx
07/12/08 My brother enrolled on the trial, which certainly seemed to be working, all the usual symptoms associated with aggressive chem manifested themselves, and he lost his hair and even his eyebrows thinned, he remarked earlier this week how pleased he was they remained! His blood counts took ages to recover, and never really did, which of course was a problem. The plan was to undergo another cycle of the trial but unfortunately my brother succumbed to infections and then pneumonia. They all responded to antibiotic therapy, although evidence of Aspergillus remained in his lungs despite antifungals being given as prophylaxis. He managed to spend some time at home, but was then told the trial had not worked and had not made any difference at all and his days were numbered, maybe months, maybe weeks. He received this news as a fact, afterall, 'we are all going to go, I am just going sooner than I would have liked' ........ he was so very brave, he was not frightened although curious as to how he would actually go and he was so concerned for those he was leaving behind.. Sadly and much quicker than anticpated my brother died on Wednesday December 3rd at 21:42. He was so peaceful, very dignified and surrounded by his family, just as he wanted. He will be missed so very much but has left a multitude of memories with so many people. In life he was absolutely inspirational and will remain so for always.
FormerMember
hi Debbie,
My trials are being sponsored by the drug company Pfizer. The oncologist in charge is Dr David Chao at Royal Free Hospital in London. We all get an oral drug called Tarceva, and then on a random basis we have either Sunitinib or a placebo. I understand that both drugs are called growth inhibitors and attack cancer in a different way to other procedures. I had another scan yesterday and will let you know the results after I go to clinic on Wednesday. My thoughts are with you and your family.
Thanks so much for the update Angela, and I hope the scan results are promising - please do keep me posted. Clavis sponsor my brother's trial, I am not sure it has been trialed in UK yet and he will certainly be the first at Christies, assumnig he is OK to start the trial tomorrow. He was kept in after OPA on Friday, perhaps as well as the weather as been diabolical and he does not liove on the doorstep! He was of course very disappointed not to be home for the weekend prior to comencing the trial Monday. Base line obs complete, just have to ensure heart scan is good and then 'bring it on'. The trial is in cycles, each cycle is 5 days. The drug, CP.4055, is admibistered IV over 5 days, 2000mg/m2 and then there are 16 treatment free days. On days 10, 17 and 21 visits to the OPD are required for blood tests and to establish side effects if any. If the treatment is being tolerated a second cycle might commence and subsequent cycels are possible as long as the leukaemia is stable or there is improvement. Fingers crossed for the latter.......
Gosh Debbie, what an ordeal. I must admit I thought that things were improving quite a bit for leukemia patients, so sadden to hear of his ups and downs. I hope that the trial is just the ticket for your brother. Are they blind or will he know for sure he is getting the new treatment?
Hi Lori, Yes it is an ordeal and he has been real poorly. We know he is receiving the drug, which is only just being rolled out across Europe, previously, as I suspect your read, it has lnly been trialed in US on 160 patients. As the drug is still being trialed actual results have not been published, completion date is expected to be September 2009. Bone marrow to be taken today week will show what effect the drug has had, so absolutely all fingers, toes, arms and legs crossed. I was (we all were) absolutely gutted to have to take on board that the leukaemia came back, 6 years after the chemo, the irradiation and a successful bone marrow transplant ...... usually relapse is in the first 12 months. As I said last night a winner never quits ....
By way of an update my fantastic brother died peacefully on Wednesday December 3rd. He faced his illnesss with such courage, such stoicism and fortitude, he never complained not once, and was a gentleman to the end, his only concern being for those he was leaving behind.
He was so loved and will be sorely missed.
I am so proud to be able to call him my brother, he is at peace - this was just one battle too many.
On Monday we wetre able to discuss many things from our childhood days, music, poems, 'other stuff'', - but of significance the words below ...
Miss me, but let me go
ANON
When I come to the end of the road
And the sun has set for me
I want no rites in a gloom filled room
Why cry for a soul set free
Miss me a little - but not too long
And not with your head bowed low
Remember the love that we once shared
Miss me - but let me go
For this is a journey that we must all take
And each must go alone
It's all a part of the Master's plan
A step on the road to home
When you are lonely, and sick of heart
Go to the friends we know
And bury your sorrows in doing good deeds
Miss me - but let me go
I feel empty, devastated, honoured to have been able to nurse and help him in his last days and I know he would not want me, or the family to grief, but it is tough, so tough.
