CMML2 new diagnosis

Hi Val Fifer and welcome to this corner of the Community although I am always sorry to see people join the community………. I am Mike and I help out around our various Blood Cancer groups.

I don’t have Chronic Myeloid Leukaemia (CML) but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well........

Especially as I have had 2 Allograft (donor) Stem Cell Transplants (SCT)

Consultants.... all these years on still tend to use the old term Bone Marrow Transplant but they will be referring to SCT.

My first Allo SCT was in June 2014 when I was 58 then my second Allo SCT was in Oct 2015 a month before my 60th birthday.......... 9 years on I am living a great life.

Being told about SCT is scarry.... we tend to call this the 'Talk' 

As I said I had two Allo SCTs soI had two ‘Talks’ with my SCT teams.

The first one was indeed challenging and yes, very scary and a lot of the info went over our heads. We were like rabbits caught in headlights as our attention was often focused on the bad things that could happen and we totally missed the good positive parts.

My first Allo SCT did not work (long story for another time) so going through our second ‘Talk’ was nowhere near as scary as I had the T-Shirt…… apart from “Mike if this does not work we don’t have much tools left in the box”.......... but it did work..... and over the past 9 years a few new treatments have come on line so if I relapse I have a fall back.

The ‘Talk’ is where your team unpack what they are going to do and carefully detail ALL the possible side effects. Yes, some of these side effects can turn out to be bad, very bad and you will be giving your tram permission to take you to the point of being open to life threatening infections and side effects……. then bring you back with an ‘All New You’ it all sounds very scary but it is ALL very do-able.

The talk is not there to scare you, but to be honest and as best as they can tell you what a SCT journey is like and they do have to cover their backs as well.

I have talked with many people post SCT and a very high percentage will agree that the SCT process was nowhere near as bad as what was said during the ‘Talk’ and in all the info provided......... the main thing people talk about was the boredom.

What type of SCT are you having......... is it an Allograft - (Matched Donor) (Allo) or an  Autologous - (Self) (Auto)?

What SCT centre will you be treated at?

Always around to help more or just to chat ((hugs))

Hi Mike,

What a journey you have had, you must be so strong. I have had ups and downs in life, but nothing compared to you.

The transplant will be done in Glasgow, where they are currently looking for a matching donor. Today, I have my positive head on, and wish it was tomorrow. It's amazing how emotions change from day to day. I know I can do this, it's just sometimes I get the wobbles !!

Dave and I were up in Inverness just recently, for a long weekend. It's a beautiful city, we had a great time.

Best wishes, Val

Hi again Val…… great that you had a good time up in Inverness…..

We all have to do what we need to do to keep ahead of the beast

We are originally from the North East Buchan Aberdeenshire coast but lived in Dunfermline for a few years before coming up to Inverness some 33 years back.

You are in very safe hands with the Glasgow Team…… it’s basically the same staff I had across the Clyde in The Beatson where the SCT unit was and where I had my 2 Allo SCTs.

I have been to the QE Glasgow for clinics but never got up to see the SCT unit.

The day I was discharged by Dr P the head SCT Consultant I asked her a few questions as she knew that I volunteered on this community but also on a Lymphoma Specific Site as well.

She said that her unit was running at 92% going on to long term remission 5+ years….. when folks are discharged to get on with life.

I was actually discharged at just under 3 years post my second Allo SCT and now only have full bloods done once a year and a follow up phone call with one of the SCT unit Late Effects team.

She also said in her unit the average life expectancy for folks who did not go forward with a Allo SCT when it was recommended and was not taken up was 2-3 years.

The 8% in her unit who did not survive the process were average age of 59 (I was 58 on my first Allo and a month from 60 on my second) with all having at least one underlying other health issue and that their pre SCT prognosis was very poor……

I have Asbestosis so this was looked at very closely but as my 2 Lymphomas had progressed significantly we agreed that we role the dice……. and here I am living and loving life.

Any questions just ask ((hugs))

Hi Mike, 

Dave and I live on a farm, outside St Andrews but currently renovating an old house in St Monans (I'm very hands on, so it's frustrating not being able to do as much). From farm life to sea life, I can't wait!! It will be a lovely place to recuperate with the fantastic sea views. 

That was such an encouraging message you have sent. It has really given me a boost. Thank you. I hope lots of people read it.Val 

St Monans……this sounds amazing.

When navigating the highs and lows of the SCT journey remember that you are in this for the greater good…… and looking forward to enjoying your new home is a great incentive