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Hi and welcome to the Community but sorry to see why your have had to find us. 

I do hope that some of the ANL folks can help you out as I had a different blood cancer.

You can also send questions to Caroline our Macmillan Heamatology Nurse but please allow 2 working days to get a reply.

((hugs))

Hi Mike,

Thank you for your very quick reply and advise, which is very much appreciated.

I am sure you will understand, that having received this news on Wednesday, my life and also those of my family, are in deep shock.

Thank you for your hugs, which I send to you as well.

Can I ask about your statement:

“Can I please add at this point,  a stem cell transplant cannot be considered”

Why is Stem Cell Transplant being ruled out? I ask as for me SCT was my only option left 6 years back.

Consultant said it would be too risky because it’s a relapse and my body had already taken a massive hit with treatment when first diagnosed. Also, the toxins would do more harm than good. I am over sixty years of age.

Basically told the same-ish but we were at a last roll of the dice with nothing much more left to use.

Given 2-3 years back in late 2913 so my case was put out for review by experts in my type of NHL and a plan was put together that did include two Allo SCTs.

The hope was the first SCT would do the job and being less toxic the recovery would be quicker - it did not work so we had to go for the full on treatment resulting in a long recover and long lasting side effects - you can see my journey by hitting my Community name.

Were you told this info by your Haematologist or a SCT Specialist?

I was 58 and 59 during my two SCTs with a lung condition that was seen as an acceptable risk.... I have talked with folks in their 70s who have been through SCT.

((hugs)) 

I was told this by my Haematologist.

 I am actually 69, but he was very insistent that it would be too dangerous. Apparently, the process here, is six months in local hospital and he also added, because of the high toxicity, I would be far more open to infections, because the treatment would knock me for six !!! 

Last October,  my blood tests were indicating my blood was the best it has been since initial diagnosis, Then a month ago, I started to notice familiar signs, bruising on my body etc. I did have a non malignant Carcinoma removed from just below my neck in mid December, I wonder if this could have any bearing on the current situation.

 Very confused at the moment !! 

It is all about getting clear information (from more than one source?) and with the clear info you can make an informed decision with no regrets having looked at the risks and quality of life.

My choice was simple and a complete roll of the dice but it was based on clear info.

Are you based in the UK?....... in all the years I have been talking with people about SCT (we do have a Stem Cell Transplant group) the longest hospital stay for SCT is 6-8 weeks but this was for to complications.

Indeed Infections are part of the process and it’s just part of post SCT life...... 2 Trips to ICU, 5 times back in hospital (31 days) with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia, Septicaemia, A Fib and three months of low blood counts caused by GvHD so regular blood transfusions every second week is just part of my last 4+ years - but I am in remission from a condition that in 1999 I was told AI would never hear the word.

Always around to talk........ Keep pushing the doors ((hugs))

Mike, I believe a return of AML not following a previously successful SCT makes patients poor candidates for a first SCT. Its the reason why most drs push AML patients to SCT right away.

Sandra, do ask drs all the questions, though. They owe you any answers they can give. So many hugs...

Thanks for this Alissa , this why it’s so good fir others to drop in past as they’re are so many dimensions to this journey.

I do hope you are well ((hugs)) without touching ;)