Sorry I should have really replied over Christmas but to be honest was trying not to think about CML etc too much.
The biopsy went ok but I was in the camp of it hurt a fair bit and I was very sore over the few days after. He took quite a few samples, looked like 2 liquid samples 4 or so slides and a core of bone and marrow. But its done and I shouldn’t need another one anytime soon with any luck. I am still waiting on the results but should know hopefully this week. I should then be able to work out a treatment plan with my consultant and with any luck start feeling better which is really what I am waiting for. At the moment it still a bit of an unknown and as weird as it sounds I am looking forward to knowing exactly what’s going on and how we are going to treat it.
@Erica Christmas was very nice thank you, we had most of the family over Christmas, boxing and new years so the house was really busy and fun. I was ok other than needing a long nap on Boxing day and other than that it was nice to really not talk about CML for a few days.
I have spoken with my closest friends now and they are all being really lovely and checking in with us regularly. I will call Macmillan and was going to see if there were any groups I could go to in person in the area as it would be nice to talk to people about my diagnosis without worrying them or upsetting them.
again thanks to everyone for the replies, and I hope you are all well and had a great festive season as well
Please do let us know how you get on @AndyP and I can understand you saying that you are looking forward to knowing exactly what’s going on and how we are going to treat it. I do like a plan.
Just to let you know that I have Chronic lymphocytic leukaemia (CLL), which is another chronic leukaemia and I have always been on ‘watch and wait’ or ‘active monitoring’ with regular tests and I have learnt to manage my symptoms, the main one being fatigue.
This can be a fairly common way forward, but others might have treatment straight away or at any stage.
The medical people take lots of things into account before suggesting a way forward and from your biopsy it sounds as if they are being thorough.
Please do let us know how you get on and look after yourself
Just wondering would they do further scans and bone marrow biopsy if putting you on watch and wait I am very stressed as my haematologist talked about treatment at my first appointment I.e chemo and anti body and have now had PET and CT scan appointment on Monday where they will tell me results and she said possible bone marrow biopsy will be needed
I am not surprised that you are feeling stressed, I always feel stressed when I feel out of control and not knowing what is going on and why.
However it does give you lots of questions to ask at your next appointment.
I always feel the more tests I have done the more thorough my medical team are being.
We are all such complex beings…
Please let us know how you get on and be kind to yourself your feelings are natural
Andy, I found the not knowing the worse. At least a clear diagnosis allows you & the doctors to plan the way forward.
I hope your news is good news.
Edit. If you get the NHS App and link you records you can see the results as they come in. I did that and it allows me to plan questions.
Oh @DougyW thanks so much for the handy hint of looking at your test results before an appointment so you can plan your questions.
Look after yourself and how are you getting on.
Bone marrow biopsy came back fine, earliest of early stages of CML. Had another blood test yesterday to confirm current counts and should be starting on Dasatinib next week.
I will have a look on the NHS app, thanks for the hint @DougyW
Dear Andy,
I am so chuffed for you. What an excellent result. You will still have many appointments over the years as they check your levels but to start from a low score is wonderful news.
CML is managed so well for most people. I send good wishes that your medication suits you and gives you speedy results. There are several treatments and my friend took a couple of goes before she found one which suited her whereas I have only been on the one tki and it has worked well for me.
Happy New Year to you and your family 2023 will be a good one!
So I started on Sprycel Dasatinib on the 11th, first week was pretty unpleasant with nausea and loss of appetite but that has mostly subsided now and just some bone pain and fatigue at the moment which I can deal with fine.
First night was awful with the nausea and also from the anti-gout medication which made my jaw muscles ache really badly so no sleep that night . Stopped the anti-gout the next day (under instruction from Dr) and that stopped the jaw issues thankfully. Its basically got better every day since then so with any luck that will be the extent of the side-effects.
I had the first set of blood tests back last week which showed some good improvement particularly with platelets which dropped from 1300 down to 900 in 2 weeks which hopefully is a good sign things are working as it was constantly increasing before.
I pick up two more months tablets tomorrow and then should be on a 3 month test/tablet schedule after that.
Me and the wife treated ourselves to a spa break last week which was really nice, massage certainly helped with the aches!
So at the moment, I’m doing ok, still have the odd off days where I fell a bit down about things but now the side effects are less and I’m getting used to taking a tablet etc those days are less frequent.
@AndyP your side effects sound nasty, by your results sound promising.
I am so impressed that you and your wife treated yourselves to a spa break and the massage just what was needed.
I think self care is so, so important.
You and your wife look after and be kind to yourselves
AndyP glad that you have made a steady start to your treatment and that your bloods are joining in and doing their best too. Remembering to take that medication regularly and at roughly the same time is a great way to go. That is not always easy initially if you have been unused to taking pills. Also remembering to drink enough water too. I quite enjoyed it when the doctors would tell me that I had matched their 3 months or one year targets. It made me feel especially clever!!
Your short break sounds lovely. I found that having something good to look forward too was helpful. The Hans Zimmer concert at Wembley Arena was one of my treats to us both and we still remember it fondly.
Best wishes to you.
. Stopped the anti-gout the next day (under instruction from Dr) and that stopped the jaw issues thankfully. Its basically got better every day since then so with any luck that will be the extent of the side-effects.