Hi All, my husband has been recently diagnosed with CML.
The advice around going out and about, socialising to theatres/cinemas and travelling etc has been conflicting. Some professionals have said he can, others have said he shouldn’t.
As this is all very new for us, we wonder what others people’s experiences have been.
Hi Michaela
Sorry to hear your husband has joined the club he didn't apply to join.
It would be easier to give a view on going out if you can give us a little more information - when he was diagnosed, medication prescribed, and any test results (e.g. FISH or BCR-ABL).
Fundamentally I would say that if he feels up to going out - e.g side effects are tolerable and he is not too tired - then it is better for his mental health to do what he wants to do. The early days are as much a period of mental adjustment as they are the physical adjustment to the medication.
I would recommend reading under the "About CML" tab at the top of the page - especially the "Just diagnosed" section - you may find some useful stuff there. Under the Patient info tab there is a section named templates, which includes lists of questions to ask at appointments with the treatment team. Those answers will enable those on the forum to support you with relevant information.
The very bottom line is that for the vast majority of people a diagnosis of CML these days is unlikely to have a significant impact on life expectancy. I was diagnosed 16 years ago when I was 50, and plan to go on being pretty active for at least as long again if not more.
I hope that's useful.
Thank you so much for your response.
We are very early days / he was diagnosed last Wednesday. They have confirmed the Philadelphia Gene but awaiting confirmation on the phase from bone marrow biopsy. He has been in hospital since diagnosis as his WBC was nearly 400,000.
He has been on hydroxycarbamide since he has been ho hospital and started on Dasatinhib a few days ago.
He feels well (no symptoms prior to diagnosis) although side effects appear to be surfacing - mouth sores, skin rash, fluid retention and a metallic taste in his mouth. Fatigue seems to be setting in too, however he hasn’t had a good night sleep yet.
His WBC has come right down which is positive and hopefully he can come home soon.
Thank you again, I’m so glad I found this online community. I am sure we will be using it regularly!
Wow, I think your husband has a pretty robust constitution if he was feeling well at a WBC around 400,000! That's up there among the highest numbers I can remember seeing.
The BMB (Bone Marrow Biopsy) result will give the treatment team a better steer to guide you on the next days and weeks. Do let us know when you have it.
Bless you and your husband. I can sympathise with what you’re both going through at the moment.
Like your husband I was diagnosed nearly 6 years ago, wbc was 330,000 so not that far from your husband. I was prescribed Hydroxy also which took about 4 weeks to get my wbc down to around 14. It was stubborn and required a fairly high dose of the hydroxy. Platelets remained very high until TKI commencement. I had a massive spleen to the size of a rugby ball I was told (the reason I got checked out) to my amazement this returned to its normal size in that same period too. Other than that and some extreme weight loss and night sweats I didn’t put it all together.
Since then I have been prescribed 600mg Nilotinib and my bloods returned to perfect shortly after commencing, they take a bit of time to stabilise I remember them making my wbc around 4 in the early days, they’ve consistently been around 8 which is completely normal.
It took me 2.5 years to reach MMR (0.1%) which caused a fair amount of anxiety and disappointment. We stayed the course and by 2.5 years I was down to 0.07% (MMr) and since this time I’ve had a downward trend to 0.01% (which I am currently) MR4.
The road can be slow and worrisome for a lot of us and rightly so. Make sure your husband is taking care of his mental health as this destroyed mine for the first couple of years.
Thankfully I’ve been in remission for 3 years and the most important take home I can give is that anything 1% or less is considered as extremely safe and in fact if you’re in the US it’s regarded as target met. In the UK their is a bit more emphasis on MMR but everyone will tell you that clinically their is now evidence that being in MMr (0.1%) vs CCYR <= 1% has any detrimental outcome. It took me less than 3 months to hit CCYR. Make sure your husband takes care mentally, lots of hobbies, love and support etc. And although this is scary for all it’s only cancer by definition but in reality it’s reduced to a chronic illness that requires a little helping hand and that’s his TKI. Take as prescribed and don’t miss a dose as much as possible.
I am sure that the story will be similar for your husband but we all understand the worry this causes especially in the early days. 95% of those diagnosed with CML will live and ordinary life quite remarkable statistics.
It takes a while for it all to become normal and for me it’s more of an annoyance now more than anything else. Pop the pills and carry on.
All the best to you and your family.
Al
Thank you very much for your reply.
Fortunately he was discharged from hospital on Thursday when his WBC reached 57 - the hydroxy worker very quickly considering!
Since returning home he has had little side effects, mostly fatigue. He is a strong man with such a positive outlook. He is keeping busy, enjoying reading, some cooking and we have set up some painting/canvases for him. Physically he feels good, but we are terrified of him getting a serious infection as the hospital focused on him adapting his lifestyle to reduce infection risk. We have a five year old so we are often out and about keeping him busy, so this will be a big change for us.
Thank you for all of the other information, I am sure it will all make sense to us in the near future when we meet with the Dr again and learn more about his bone marrow results and updated blood tests.
Thanks again, it’s so reassuring to know we are not alone.
Thank you very much for your reply.
Fortunately he was discharged from hospital on Thursday when his WBC reached 57 - the hydroxy worker very quickly considering!
Since returning home he has had little side effects, mostly fatigue. He is a strong man with such a positive outlook. He is keeping busy, enjoying reading, some cooking and we have set up some painting/canvases for him. Physically he feels good, but we are terrified of him getting a serious infection as the hospital focused on him adapting his lifestyle to reduce infection risk. We have a five year old so we are often out and about keeping him busy, so this will be a big change for us.
Thank you for all of the other information, I am sure it will all make sense to us in the near future when we meet with the Dr again and learn more about his bone marrow results and updated blood tests.
Thanks again, it’s so reassuring to know we are not alone.
