My Dad

Hi Nick,
I just wanted to offer some support for you, you don't say how old you are..my two are 24 and 20 and from the start I have always tried to talk to them re my therepy, for I was advised that if I don't...I was diagnosed in 2003 they will go searching around on the net just as you are, although its good for you to have found this site..I was advised to tell them the worst and the best and hope for somewhere inbetween. TKI therepy can make counts go up and down, its hard to judge without knowing more.
Others on here might be able to offer more advice re your dads counts as even though I have been living with it for 8 years I am no expert.
I wish you and your Dad well and hope you can get some support too and someone to talk things through with you.
Michelle

Hi Nick,
It must be very difficult for you given the little information your dad gives you about his current situation. You might ask your dad if you can go with him to his appointment on Wednesday as him keeping you in the dark is making things worse for you, although I am sure he is only trying to protect you.

Given that your dad is on the Spirit 2 trial, he will be monitored very closely. It could be that his doctors might need to change therapy or dose and therefore he will need to either change trial arms or come off the trial altogether- but I am only guessing as you have so little information about your dads real position.

I am sure his doctors will offer an alternative- it might be that his disease might be better controlled by one of the other drugs available i.e nilotinib, or depending on the marrow test results ponatinib (this is a 3rd generation drug that is currently in clinical trial)

I imagine that your dad is trying hard to protect you, but you might try to explain to him that knowledge is the best option for surviving CML.... Fear is our worst enemy and lack of information only serves to make that enemy more powerful.

I do hope you can persuade your dad that you can help him understand what it happening... and that by allowing you to become involved more closely he will be helping you cope.

Do try not to worry about the present situation re: NICE and access to dasatinib and nilotinib. If your dad is being treated at a specialist centre- and I assume he is as he is on a clinical trial- then he has the best options available to continue to access the best therapy.
Given his brothers both had acute leukaemia (?)he must be very scared, but CML is not the same disease as AML or ALL, and its mechanisms are very well understood which is why there are at least 4 targeted therapies available (2 -bosutinib and ponatinib- available through clinical trials).

I hope this has been of some help to you. I have copied the Spirit2 website below with the trial protocol.... is your dad being treated on the 400mg imatinib arm or the 100mg dasatinib arm?

Sandy

http://www.spirit-cml.org/spirit-2-home/about.aspx

SPIRIT 2 is a Phase III, multicentre, open-label, prospective randomised trial comparing imatinib 400 mg daily versus dasatinib 100 mg daily in patients with newly-diagnosed chronic phase Chronic Myeloid Leukaemia (CML).

The study opened in August 2008 and it is expected that 810 patients will be entered into the study over the next 3-4 years.

Patients will be randomised in equal proportions to one of the following treatment groups:

a) Imatinib 400 mg daily
b) Dasatinib 100 mg daily
The primary endpoint is to compare Event Free Survival (EFS) between the two arms at 5 years.

Patients must be newly diagnosed (<3 months) and have been treated with only hydroxycarbamide (hydroxyurea) and/or anagrelide.

Right my dads just called me. Not good news.

His words:

His blood levels are off the scale. He has done 11 blood tests and a bone marrow test. The specialist, at william harvey kent, has said the most likely course of action is now 3 weeks in patient chemo, then if that doesn't work, use a sibling or some register for a transplant.

Now someone please tell me honestly, how SERIOUS is this?

Cheers and thanks in advance

Nick

I took a quick look at the website for the hospital you mention and I can't see that it is a specialist centre, and seems relatively light on haematologists generally. I agree with Sandy that given what your dad has been told and in particular the possible treatment course suggested his best course now is to be seen at a specialist CML centre. For a potential transplant presenting with CML, given his location the Hammersmith is the place to go.

Best

Richard

King's is the specialist CML unit for Kent,get refered to Prof Mufti,Kings have done more transplants than the Hammersmith,and Kings have some joint care CML patients with the William Harvey.
The Hammersmith hospital is very good,but Kings should be quicker to access.

What hospital is your Dad going to for the chemo and transplant? That will have a lot of bearing on his treatment and the information you will be able to get? Specialist places like Kings and Hammersmith have great patient and carer help available to answer your questions. Do let us know how he is and where he is going
ATB
Pennie.

Hi Nick,
try not to panic although I know that is easier to say than do. I will try to reassure you. Your dad is not in the best place but he is not in the worst place either as his doctor is obviously acting quickly. Chemotherapy in blast stage (I assume that is the stage of disease your dad has now entered- do you have any idea how many blasts your dad has evident in his blood and/or marrow?)
The outlook for surviving blast crisis depends very much on the following:

1. treatment MUST be at a centre that has expertise in CML rather than other leukaemias in general
2. how many successful transplants they perform per year.
3. finding a well matched donor

additionally:
4. the percentage of blast cells in your dad's blood/marrow- more than 30%; 40%...?. etc
5. how effective the initial high dose chemo is in getting control of the blast cells and getting into &st re mission or 2nd chronic phase
6. how fit your dad is and whether he has other medical problems which would impact on recovery from effects of transplant in the short term

BUT above all getting him to an expert centre for rescue therapy with high dose chemo
is key..... and to answer your question NO chemo does not cure CML. currently the only possible cure is stem cell transplant.

If your dad can get to Hammersmith -which is the foremost transplant centre in UK and is expert in CML research- then he might be offered a so called 'mini' stem cell transplant if he can identify a donor. I had this kind of transplant there back in 2003 which was a lot easier to take than a trad transplant.

Sandy

Hi Nick, the reason they want his sibling contact details is so they can test them for HLA compatibility- for every sibling there is a 1 in 4 chance that they will be a good enough match to donate stem cells for a tranplant.

It is quite common for people to put all their faith/trust in their specialist and quite hard to convince them that it is not necessarily the individual doctor that can save lives but the specialist team at the specialist centre that does so.
My doctor was my hero too... but when I had a stem cell transplant (at the UK's foremost CML specialist centre - there are others but not as big or well funded) he did not treat me himself- the transplant team did.
Transplants are extremely difficult procedures and to survive for the long term you need to be in a place where they do this a lot- and the Catherine Lewis centre at Imperial College Hammersmith Hospital is one of, if not the pre-eminent, transplant centre in the UK. They also have an extremely good track record in transplanting 'older' patients by offering RI-SCT (reduced intensity) which as I said in my previous post is a much safer option and has a good survival profile.

I do hope high dose chemotherapy works and gets your dad's disease back to a 2nd chronic phase.... by which time his doctor will have identified whether or not he has an HLA matched sibling donor. If not then they will start a search on the international donor registries for an unrelated HLA match.

Maybe when your dad feels he is in a safer place- i.e after the chemotherapy has controlled his disease- he will be more willing to consider thinking about his best options.

I imagine you will be able to talk more fully to his doctor when your dad is in hospital?
Best wishes,
Sandy

He now has an appt at hammersmith, defo having a transplant.

Next to read up on BMT

Dear Nick,

I am so sorry for your loss & know this is a very difficult time for you and your family. There are many charities that would appreciate donations, one of them being Leukaemia & Lymphoma research.

Thinking of you at this sad time & please feel free to keep posting on this site if you would like to keep chatting, we are all here to help & support you.

With love

Ali.

Hi Nick

I am so sorry to hear the news of your dad's death. Wishing you strength in the time ahead and do keep in touch here - that may be some sort of comfort in the days ahead.

Like Ali, I would like to mention the Leukaemia & Lymphona research charity.

Take care - you will be in my thoughts and prayers

Joanna