MDS, Refractory Anaemia and possible SCT but not possible I'm told.

Hi Conner,

yes, our daughter didn’t respond fully in any lasting way to chemo, but had a full response to the first targeted therapy for her type of lymphoma. It appears after 7 years of standard plus some trial treatments she was primary refractory. 

(She’s doing ok now though!) 

hugs xxx

Hi thehighlander, He was offered a trial chemo CPX AML 19, he didn't resond, he has now had a cycle of flag-ida, and has been in hospital 7 Weeks, keeping fingers crossed this is working.

Thanks for this, oh 7 weeks is such hard work but a number of folks have been through FLAG-IDA so let’s look for this to do the job and definitely keeping both sets of fingers crossed  xx

Hi goldtooth, how are you getting on with this treatment ? My husband has just had to lots of chemo to find out if has done nothing, maybe this will be the next treatment ?

Last week I had my 57th monthly cycle of Azacitidine which is still working fortunately. I’m treated for 5 days in every 28 which takes its toll on me mentally as I’m always worried what’s going to happen when it stops working. That’s a long time into the future I hope.

I hope this treatment works for your husband as it has for me.

Good luck and best wishes to you both

Anthony

Ps I should have mentioned that I’ve always had a huge amount of support from the Macmillan Support Nurses in regard to this illness, they are online 7 days a week 8am—8pm phone 0808 808 00 00

Hi Goldtooth, how are you getting on with your treatment ? My husband starts it soon, but we have been told there is a chance this might not work ? We are hoping and praying we get something positive back.

Hey Connor 1234.

i can understand your concern.

Azacitidine is still working for me, I start my 59th cycle next Monday providing my

pre chemotherapy blood test tomorrow show no anomalies, I must admit this gives

me a lot of anxiety each month.

after all these cycles I must admit I do find it a strain as I’m very much aware that

the treatment won’t be efficient for ever, my whole life has been turned upside down.

i remember clearly when I was first diagnosed, the shock which you must be feeling

as well must be overwhelming for you both.

Dont lose hope, that’s all we have to cling to, I read a very good quote by 

Franklin D Roosevelt “ when you get to the end of your rope, tie a knot and hang on”

i always think of that when I feel in despair.

i wish you both the best of luck and hope that the treatment does work for your husband.

keep in touch and let me know how you are getting on, if there’s any help and further advice I can give please just ask

best wishes

Anthony

Hi Anthony, that is brilliuant, was you not offered a transplant ? My husband has this mutation TP53 which makes it difficult to treat, have you had any problems ? He has had 2 courses of intensive chemo and both have done nothing, his counts are low and is having regular platelet transfusions and blood. Does this sound similar at all ??

I asked about a transplant when first diagnosed in 2014 and was told I was too old.

i was 70 at the time.

i have not needed to have transfusions yet, but I do understand that once Azacitidine stops working I will become transfusion dependent as AML starts to develop. That’s why I dread each pre chemo blood test as it could be the one that shows that the the chemotherapy isn’t being effective anymore. 

i truly wish I could be more supportive to you both. 

Best wishes to you both

Anthony