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Just found out... :(

So this afternoon I went to my local hospital and was told that I have CML...

I'm scheduled for a bone marrow biopsy tomorrow and am dreading it because I'd had one when I was younger and remember it being extremely painful. They said they -used- to do these with a conscious sedation medication but now only do it with a local and maybe entonox...

Can anyone reassure me that if it -is- going to be painful, it will be short?  (The first time I had it, I remember crying all night it hurt so bad...)  I've talked myself into going as I know that knowing whether or not I have this 'philadelphia' gene will shape the kind of drugs they'll use for my treatment, and I guess it's important to know, but I really am not looking forward to it.

Also - well, everything else is a blur... I don't like the idea of having "cancer", (who would?), but what I'm reading online so far is making me feel like it might not be the end of the world...

You all have been through this... any advice for someone who's literally on "day one"?

 

 

 

Sorry to hear of your diagnosis it is indeed a scary time when you first find out. It’s a lot of info, emotion etc to digest so my best advice is to take it in your stride talk talk talk and do the things you love doing and being with the ones you love. Lucky for you if CML/PH chromosome is the final diagnosis then you’ll live a normal life span albeit on medication likely for the remainder of your life. A small price to pay for something that used to 100% kill reduced now to around 5%.

The best way to describe the bone marrow biopsy (you should only need one) is uncomfortable. They insert at the back of the hip, it was just an uncomfortable/pressure but I don’t recall any pain. I couldn’t walk about too much for  about a week.

Once you get that bit out the way and start meds you’ll see a lot of worry for the most part dissipates. In the beginning I didn’t believe any of it would work. Very cynical I know. But soon you will see and learn to adjust to a new you.

If you let it this disease can consume you mentally as it has done with me at times, but you learn new ways to cope.

You’re going to be fine. Everyone here is lovely but without this site we would all feel very lonely.

All the best

Alex

Hi Zz 

 

I was in your position 15 months ago. !  CML cancer can sound very scary but actually with the drugs breakthrough over the last few years we all will live to an old age and most certainly die of something else other than CML.  
You will have to take daily medication which can have some side effects but given the results on the leukaemia it’s a small price to pay. 
For myself and my family during this worrying time it was knowledge and talking to people on here that diminished  the anxiety and fear.
Now I often tell people that yes technically I have cancer but I am the luckiest unlucky person in the world ... in that it is totally controllable and will not kill me. 
Re the Bone marrow aspiration I have had 5 in 15 months !  My specialist goes in to my breast bone after a local anaesthetic which is over in 3 mins.  I really don’t feel pain but more uncomfortable pressure. Then a quick plaster and coffee and I drive home. 
 

It’s great to virtually meet you and I urge you to use this forum on your initial journey of discovery into your new world of CML. I hope this note helps and please do hesitate to reach out if you need anything. 
mark 

On the bone marrow test ... try not to get too worked up about it. I think tensing up makes it worse!

Have you had a tooth extracted? To be honest, I'd prefer a bone marrow biopsy over that any day. I have only had local anaesthetic with a bone marrow biopsy, but wouldn't have said no to some Entonox (nitrous oxide)! 

It's most definitely not the end of the world. For the vast majority of patients, CML is very very treatable. Bone marrow biopsies are not something that usually need to be done often - and in some cases patients never have one.

David.

OK - things have definitely changed from when I -last- had a biopsy, which hurt a great deal.

Have just had it done this afternoon, and you all are right, it wasn't too bad with the entonox and the local.  (The haematologist said the needles these days are much better than they used to be, and the drugs are better too...)

So I guess now I'm waiting for a lot of results to come in.  I've been put on hydroxycarbomide because my WBC are very high and going up apparently, (last week they were 77, this week they're 90) whilst they wait for other test results to come back.  

I appreciate the positive comments from the others on this forum.  I'm going to try to see this positively (although I tend to be an Eeyore more than a Tigger), and it's good to hear your experiences.  

Glad it went well. It’s natural to blow things up to be worse than they are especially with the unknown.

Yes I was and like many started on Hydroxy for about 3 weeks high wbc of 330 platlettes of 900 or so. Took 3 weeks and dosage increase to get me down to normal levels. It seems you’ve been caught fairly early and you’ll no doubt respond very quickly once you start TKI.

Just take your time it’s hard to believe this isn’t as bad as it all seems. It’s more of a shock than anything else. You’ll be fine.

So the last four days I've started to have rather a lot of pain on my left side, just where the last rib is.  I've read that the hydroxycarbamide might cause 'tummy pain', but I'm also reading that a lot of people have had issues with pain from a swollen spleen.

When my haematologist saw me last week he said he thought my spleen may be a bit swollen and I'm having an ultrasound tomorrow for this, but are there other good way to distinguish between constipation (if that's what it is) or a painful spleen?

(I've never had constipation in the past, so don't really know how bad it feels)

Everyone’s different but I had four weeks of Hydroxycarbomide to stop white blood count production with no side effects whatsoever, so fingers crossed that you have a similar experience. As for constipation vs spleen pain, the two things are in very different places. Your spleen is tucked up under your ribs whereas constipation pain would be much lower in your abdomen, sort of belly button height or possibly even lower.

Hope that helps and best of luck on your journey with CML. Always remember that in most patients this is a manageable condition with minimal side effects. If you had to pick a cancer, this is the one you’d pick. If ever I tell people I have it their immediate response is “but you look so well”. At the point I tell people I also point out that there are 127 different types of leukaemia and that this one shouldn’t affect your life span, which seems to soften the blow and also means I don’t get too much of those head tilted to the side “and how are you feeling” type questions :D