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[AMLucy]

I had a good meeting with my doctor this afternoon - her recommendations for treatment of my Acute myeloid leukaemia (AML) after induction and 1 consolidation round were as I expected: stem cell transplant and to continue with HiDAC chemotherapy until it takes place (likely end of Oct/Nov). And she answered my questions.

I’m pleasantly surprised that my doctor thinks my overall survival chances with Stem cell transplant are still similar to when I was first diagnosed and transplant wasn’t thought to be needed. I’d been scared that with needing the transplant my survival percentages were slipping through my fingers.

My doctor explained her reasoning for recommending me for stem cell transplant, and why this changed since my diagnosis:
Initially she had been hopeful that I would have a good response to chemotherapy alone as I didn’t have the FLT3 mutation. But then I had a high measurable residual disease (MRD) after the induction round which made her worried. I’m still MRD+ after the first consolidation round. This confirms to her that a transplant is the best way forward for me. Also some more studies have come out within the last couple of months to emphasise that Stem cell transplant will be my best chance to avoid relapse (I don’t remember if the studies relate to MRD status or to my mutations).

She reckons that I’ll have a 1 in 3 risk of relapse after Stem cell transplant. That’s better than the 2 in 3 risk of relapse I would have if I persevered with just chemo consolidation at this stage.

And yes they’ll do their best to take into account my ward request!

Annoyingly I forgot to ask a couple of my questions, but she said I can email them.

[Erica]

Wow, that sounds a result @AMLucy and isn’t it lovely to feel listened to, your questions answered and you given reasons for her thinking.
Also that she will answer any questions you forgot to ask (and you might think of another couple too).
I reckon that you did really brilliantly so treat yourself. I believe in celebrating all the little wins. Keep us posted.

[2DB]

This sounds like a positive outcome well done and a great doctor
Having this good relationship from the start gets you through
It’s also good to see a doctor putting the patient at the heart of their treatment plan
As @Erica said treat yourself and celebrate the little wins

[Nichola75]

It sounds like you have a really amazing medical team around you. I’m so glad they listen and answer questions. Sounds like they have a good plan in place X

[Jharcus]

[quote=“Michaels, post:969, topic:33, full:true”]
Michael, my story so far. Diagnosed with Chronic Lymphocytic Leukaemia August 2023 aged 68, my medical history up to then was almost non existent. My last blood test was at the age of 12 years old, yes this is correct.

So my symptoms, 2015 very minor swelling of lymph nodes in left groin. 2019 insect bite bite reactions very concerning from May until October, brought midge suits as second clothing layer, treated bite reactions with over the counter 1% cortisols. The pharmacist advised that i went straight to the doctors, but i didn’t. 2022-2023 bullous lesions on feet in summer.

April 2022, i love walking at a reasonable speed, heart started pounding in my ears, just getting older?

January 2023, Lymph nodes in right groin, neck and supraclavicular enlarged.

July 2023 onwards, Legs don’t want to work, very very tired, skin starting to go a subtle shade of yellow.

August 2023 finally go to my GP, immediate appointment when i mention jaundice. Pulse 115, sends me straight to A&E.
At A&E, blood test results, my haemoglobin is only 5.6, i am admitted to the assessment unit. Four blood packs and 60mg daily steroids later my haemoglobin is climbing and jaundice fading.
I am diagnosed with Autoimmune Hemolytic Anemia driven by Chronic Lymphocytic Leukaemia.
October 2023 Started standard Venetoclax Obinutuzumab treatment.

May 2024 16 weeks of Venetoclax to go. My Lymph nodes have receded and no other Leukaemia symptoms at the moment.

I hope that my story will help others identifying and coping will this cancer. I consider myself very lucky, and cannot thank the NHS enough.
All the best Michael.
[/quote]Micha

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[Jharcus]

@Michaels

I was so grateful to see your note on the forum. I was diagnosed with Chronic lymphocytic leukaemia (CLL) in February and given the spread of lymph nodes and the change in blood counts I awaiting final confirmation of the startof treatment with Ventoclax and Obinuzumab starting later this month. I am a fit 76 year old but am obviously anxious about the treatment and side effects. I was wondering if you would mind letting me know a little more about your experience please? I hope you are recovering well. John

[Erica]

Hi @Jharcus thanks for posting what has been happening to you and yes, I think your anxiety is very natural.
The treatment and possible side effects are an unknown and I think that the unknown is always scary.
Perhaps others will share their experiences for you too, although we are all very different, unique people.
Be very kind to yourself and please do let us know how you getting on.

[Michaels]

Hi John, l have just completed my Obinutuzumab and Venetoclax program, 12 Cycles. I was diagnosed with Autoimmune Haemolytic Anemia, driven by Chronic lymphocytic leukaemia (CLL), so no watch and wait for me.
I am thrilled to bits with the results, I had manageable side effects. I count myself as a very lucky man. I wish you all the best for the future. Michael.

[rospenny1]

Hello. I am new here. A recent diagnosis of Chronic lymphocytic leukaemia (CLL). I have had phenotyping bloods and a CT scan but it seems to take a long time to get scan results. Still trying to get my head around this shock diagnosis having been told I had bacterial gastroenteritis. Chronic lymphocytic leukaemia (CLL) an accidental finding. One meeting with the Consultant and it looks as if I may not be a watch and wait and will move to treatment. No treatment yet but my hair is falling out. Has anyone experienced this pre treatment? Good to be amongst friends here.

Is anyone else on here treated at the Churchill in Oxford.

[Erica]

Hi @rospenny1 a great big welcome.
I also have Chronic lymphocytic leukaemia (CLL) and was diagnosed at 53 yrs old, 20 yrs ago, and I have always been on watch and wait.
I was post menopause.
My hair has certainly thinned and considerably laterally because of heart problems.
Perhaps do let your medical team of any new/worse symptoms, I always do.
My medical team said go to my GP and I did.
I find that it helps to write down all my fears, questions and practicalities before my appointments so I cover everything.
Look after and be very kind to yourself, hair is so visual and part of our identity.
Please do keep posting

[Nichola75]

Hi @rospenny1 and welcome to the forum. I’m glad you have found us and am sure you will find it supportive space where people can share experiences.
I can see @Erica has already shared her experiences with you.
I think we all remember those feelings of shock. I know when I was diagnosed with lymphoma my emotions were all over the place and it all seemed a bit surreal.
Please keep us updated. When do you have an appointment to discuss the treatment plan?

[Jan23]

Hi ,

I was diagnosed last week with SMZL after 2 years of going back and forth to the gp with unexplained horrendous fatigue .
Over the 2 yrs i had various blood tests which never picked up the SMZL but when i saw the specialist she told me i have had this since 2019 much to my amazement ! What has baffled me is that she says the fatigue wouldnt be the Lymphoma ?
I havent had a scan yet so i am now even more terrified that its going to be another issue aswell as Lymphoma.
I havent handled all of this very well and been a complete nervous wreck for the 5 weeks from suspected lymphoma to confirmation .
I also feel very unwell , weak and exhausted … has anyone else felt like this with SMZL ?
Thankyou

[Erica]

Hi @ I am so glad that you have joined our forum.
When I was first diagnosed, with another blood cancer, I was in shock for a long while.
I found the shock, fear, and all the other thoughts and emotions flying around in me did make me feel very fatigued, unwell. weak and exhausted, it really is exhausting and I do not function well or logically when I do not sleep well.
Give yourself time and be ever so kind to yourself.
I hope others will be able to share their experiences.
If you need to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
Take your time and perhaps write down all your symptoms, fears, questions and practicalities for your next appointment.
Please do let us know how you get on and again be ever so kind to yourself.

[Jan23]

Hi Erica ,

Thankyou so much for your amazing email .
I have been absolutely terrified and all over the place emotionally and your probably right, I think I have made myself feel a whole lot worse .
I had felt fatigued for 2 years before this diagnosis but not to the level that I am now so I guess the distress , shock, disbelief , fear and every other emotion has exhausted every part or me .
You have given some fabulous advice , I appreciate it so much x

Thankyou x
Jan

[Nichola75]

Hi @Jan23 and a big welcome to the forum. I can see @Erica has given some great advice.
We all understand that feeling of waiting for results and I don’t think there is a wrong or right way to handle it. It’s a huge deal and impacts us physically and emotionally.
Just take it each day, each hour or each minute as it comes.
Keep posting and give the support line a ring if you think it would help to talk it through.
Sending lots of love your Way X

[Leigh65]

Hello lovely people, Have been lurking for a bit here as I awaited a number of blood tests, the waiting has been very very hard. I’m Lee, 59 and a half, and have now been diagnosed with Chronic lymphocytic leukaemia (CLL). My lovely GP called me with the diagnosis and I am to have a routine appointment with Haematology at some point for monitoring. I think that is standard. Have intermittent fatigue and I’ve felt pretty unwell for a long time. I lost my job in 2023 and then after a number of bereavements along with a fatigue-collapse decided to take some time off. However, at this point, am going rather nuts at home and would like to go back to some sort of job, even do some volunteer work. However, am wondering how people with Chronic lymphocytic leukaemia (CLL) cope with this, not just in terms of waxing/waning fatigue, but in terms of infections etc. I do understand that lots of people live with Chronic lymphocytic leukaemia (CLL) and have a fairly normal life, probably including work, but am just trying to make sense of it all… thanks for listening x

[Erica]

Hi @Leigh65 I am so pleased that you have put your toe in the water and had the courage to post, welcome.
I am sorry to hear that you lost your job and had a number of bereavements, it cannot have been easy.
I was diagnosed at 53 yrs old, out of the blue, 20 yrs ago, with Chronic lymphocytic leukaemia (CLL) and I have always been on ‘active monitoring’. At that time I was working full time and worked, ran a home etc. and slept, which I am not advocating as a life.
I suppose urine infections have been the main infections, but there are also other reasons for them.
I make sure all my vaccines are up to date and personally I avoid really crowded places or transport.
I have got to know myself and what do I want to do with whom, the best things in life are free, my life is better now than it has ever been in my life. I am fitter now than I have ever been.
As for work perhaps this time will give you the opportunity to re-assess what you really want to do and how you can achieve it.
Dealing with my fatigue, firstly I have realised that since my diagnosis I do not deal well with what personally stresses me and also my fatigue can come on with medical, emotional, physiological and practical issues, sometimes I need a bap, other times a duvet dive or fresh air and appropriate exercise, I am a great walker and Pilates girl.
Give yourself time and be ever so kind to yourself making sense of it all. and please do keep posting.

[Leigh65]

Thank you for your reply, Erica. As I said, I have been lurking a bit here… your replies are always so kind and reassuring. You are a lovely lady! It’s all a lot to take in, but am trying to be optimistic. I lost my oldest friend to Acute myeloid leukaemia (AML) in 2021 and so had done a bit of reading on blood cancers previously; I had a lot in my mind as I waited for my results, it was really was quite horrendous, especially as there are so many different types and I couldnt fathom where I would fall. Chronic lymphocytic leukaemia (CLL) seems liveable with for a lot of people, so am holding onto that. Also grateful I have a lovely partner, who is a bit shell-shocked but very caring plus a number of friends (not sure how they’ll take it… I feel I wont tell all of them). Lots to consider and I will certainly allow myself time to sit with it for a bit. Definitely a wake up call in all areas… Thanks again for taking time to reply and welcome me to the group.

[Conrossmac]

Hi all, Conor Macleod of the clan Macleod here! I was diagnosed yesterday with Essential thrombocythemia (ET). JAK2 genetic mutation (think I’ve got that right thought still getting my head round it.

I was 37 years old today. So great birthday present……

I used to play loads of sport and worrying about losing that? What is the impact on fitness? Can I still play? I stopped playing about 3 months ago as I have a newborn daughter. . Sport took a bit of a backseat last year though as I had a sub arachnoid haemorrhage in May 23. The haematologist yesterday said that and this diagnosis are unrelated. I don’t know why but I find it hard to believe?

Anyway, I am here to find out whether I can keep life as normal as possible. What types of changes should I expect? Can I expect to still see my daughter be an adult? Should I slow down?

[Erica]

Hi @Conrossmac a great big welcome to our forum and I am so glad that you have found us so quickly.
A great big happy birthday to you for yesterday.
You have entered a world that speaks medical speak, 20 yrs on and I still have not learnt it.
I was diagnosed with another blood cancer 20 yrs ago at the age of 53yrs.
I picked up on you saying will I see my daughter be an adult.
I remember asking myself whether I would see my son get married and have children, well he was actually 51yrs old yesterday (the 20th) and he still hasn’t married and as far as I know got any children.
I can only share my experiences, but I am a great walker and a Pilates girl. I am fitter now than I have ever been and my 70th birthday was my best ever.
Obviously a newborn daughter will take up a lot of your time.
What I have realised is that we are all unique people with different medical histories so there is no one size fits all.
Perhaps just build up your exercise, in my book slow and steady wins the race.
The Blood Cancer UK support line is also there for you on 0808 2080 888.
I would say personally just give yourself plenty of time to come to terms with your diagnosis, you have a lot going on, be ever so kind to yourself and please do keep posting.