Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
Hi group, my dad has been receiving chemo since January this year when he was diagnosed with Stage 4 NK Tcell lymphoma - 3 cycles DeVIC with no improvement, and now on 3rd cycle of modified SMILE. His functional capacity is great, he walks most days, is active with his grandkids, washes windows, cuts the grass basically keeps living. However, despite this, at his last appointment we were told he was too old at 75y for SCT. He has no other medical conditions, not on any meds, non smoker and essentially teetotal. Due to the high relapse rate of this condition we hoped SCT might be an option , any thoughts would be appreciated
Thanks in advance
Hi AJC18 and welcome to our little corner of the Online Community.
Sorry to hear that your dad is getting ongoing treatment for his NKT-Cell.
I see you have asked our Ask an Expert Jane the same question and I am sure she will get back to you soon.
It is a very difficult situation you find yourself in, even over the 5 years since my first Allo SCT the upper age range for those being put forward for SCT has went up and a few years back I did meet one 69 year old gentleman who went through an Auto SCT (using his own cells). He found it very hard work and his recovery was challenging...... I no longer meet him as I don’t go to my SCT Hospital for clinics now so have no idea how he is doing.
As you say your dad is very fit and active with no other medical issues....... and medical teams will risk assess each individual case and even then if they think it is a possibility the patient will then go through a large list of demanding medical tests and based on these findings their recommendations are made. I know a number of ‘fit’ 50 somethings who did not get through the pre SCT assessment.
I was a very fit 58 and 59 year old with some lung issues (Asbestosis) when I did my two Allo SCT with cells from my brother. The Asbestosis was seen as an acceptable risk based on my prognosis.
I sailed through the first SCT but it did not work. As time was running out for me the second SCT was much more intensive and I did become very ill during the time in the SCT unit developing heart problems and ending up a few times in ICU.
I have never had heart problems in my life and if I now develop any infections it’s set off these heart problems. I was wheel chair bound for a few months as I lost the strength in my legs and had physio to get me back on my feet...... basically my post SCT journey lasted for a good two years with 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 and GvHD of the skin........ that is my short story, was it hard work - very! Was it worth it - yes!
I am sure that some of the others will be along and give their view point.
You need to keep asking his medical team what is next? Why would they think he is not suitable for SCT?....... keep pushing the doors.
Always around to talk, remember you can see our stories by hitting our forum names.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Thanks Mike, real life experience is very much appreciated. Yes, i can see it is gruelling process. My dad had an awful phase after 2nd or 3rd chemo where he literally could not have enough blood carried to him - transfused 1-2 units every other day and only holding even. To see him imprive physically gives us hope but for how long. I know we should always ask "what next" but without SCT im not sure what is next. Thanks again
My experience is with a different blood cancer, but I was wondering if there were any maintenance therapy options, if SCT is not being proposed? I know in myeloma that patients not eligible for SCT go onto these regimes, and they can be very successful at keeping the disease at bay regardless of the stage.
I understand why the medical profession deeply consider eligibility for SCT. I was 36 and relatively fit when I had the auto and allo. I breezed through the auto but found the after-effects of the allo pretty tough going. It’s hard to say what I would have done if I were 75, but it’s definitely worth discovering whether any maintenance treatments are available for your Dad’s cancer. At least then you have all the options on the table and can decide which route is the best to pursue.
Wishing you and your Dad all the very best,
What is a Community Champion?
Thank you Greg this is very helpful and i hope to have the opportunity to discuss this with my dad and his Consultant. He was so deflated after the last appointment, it was he who brought up the subject of SCT - i was quite shocked when he did but it seems he has been chatting and listening to what other people have been having done on the ward and i could tell he was really hoping this would be "the answer", to know that there may be other options is good. Sometimes knowing "what" to ask is so helpful, thank you.
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