Oh bugger, please come and talk to me about leukemia and/or chemotherapy

[pushmepullyou]

I'm going to try to keep this fairly brief, but apologies if I ramble on a bit as I'm very worried.

DH's brother who is 42 was rushed into hospital a couple of weeks ago with haemolytic anemia caused by an enlarged spleen. He's had his spleen scanned and that's all OK, but they think he has Chronic Leukemia (CLL), which you don't usually get until you're much older. So far all his tests have come back 'inconclusive'

His anemia isn't being controlled by steriods or transfusions and he's really ill. They are starting him on chemo tomorrow and have asked DH to go in to have his bone marrow typed.

Now obviously all this would be a lot for anyone to cope with but BIL doesn't deal with things very well. He is single and still lives at home, but comes across more as a teenager than a middle aged man iyswim. He finds his parents very difficult to relate to and DH is the only support network he has. Likewise he is DH's closest friend, and DH is very protective of him. He finds any sort of physical discomfort or unexpected sensation very difficult to deal with and also finds it hard to cope with any changes to his routine.

I'm not sure where I'm going with this, but basically I have no idea how BIL or DH are going to cope with this or how to support them. No idea what's going on or what's going to happen next.

Would really appreciate a bit of handholding and/or advice if you've managed to read this far.

Im pretty sure he needs to be in St James hospital, but still trying to get hold of the leukemia man I know thats your way atm.

Hope his doing ok, hospitals are terrible least your there fighting for him.

Hi there. Sounds like you've received a lot of good advice already and I'm afraid there's not a lot more I can say, but wanted to offer my support. Seven years ago now, my DH was diagnosed with CML and those first few weeks in particular were some of the most confusing and upsetting of my life - let alone his!

He had a bone marrow transplant less than a year after his diagnosis thanks to an anonymous donor on the bone marrow register. He's been incredibly fortunate in that it was successful and he's been in remission now for several years.

I hope this offers you some hope because even if your DH turns out not to be an ideal match, there may be someone out there who is.

And although its a nightmare at the moment, you do cope. I found that dragging around some photos in frames (to decorate his bedside and remind him of happier times) and a pack of trivia cards (to help pass time when conversation and magazines had failed us) both helped.

Also, he was treated at the Hammersmith and they were fantastic. He built a relationship with a number of the nurses and after awhile his visits post-BMT turned into a routine of sorts.

Best of luck to your BIL. And don't forget to take care of yourself as well. Leukaemia isn't cured in a day, so make sure you get a break every so often!

Thanks Lisa, Do you mean St James Leeds? His consultants are John Ashcroft and Paul Morton, I know they're haematologists and members of the Yorkshire cancer network, but not sure what they specialise in. I have been amazed at how terrible the hospital is, just at the day to day stuff, like not discharging him when he's clearly about to collapse! How's your DH getting on? I feel like a bit of a stalker but had a look at your blog the other day. Has he managd to get an appointment with the main consultant? I really appreciate you taking the time to talk to me when you're going through so much yourself.

Thank you for your support MercenaryMom. Very encouraging to hear stories of successful bone marrow transplants. Can bone marrow transplant be a complete cure for CML or does it just allow extended remission? I'm a bit confused about what the options are transplant wise tbh.

We've had a bit of good news today - he had a transfusion on Saturday and his blood count has been pretty much stable since so they let him go home today without another transfusion. He just needs to go back in if/when he feels the count is dropping. Fingers crossed this means that they are starting to get the anemia under control.

this is the yorkshire CML group, and Im sure they will be able to help with best treatment centre: here

Yes DH is seeing the top consultant tomorrow so will know some amswers about his continuing treatment then.

Bone marrow transplant is a cure for CML.

Im glad his home and doing well x

Thanks for the link Lisa, I hope your DH's appointment went OK today, been thinking about you x

Hello and sorry to read your story. There is a website by Mike Adams called naturalnews.com and is full of information about chemotherapy, leukemia and more, tell your DH to take a look. Just add your key words in the search box at the top. It makes sense to most. My mentally challenged sister has been
given chemotherapy without our consent, you can see list of tablet form on chemocare.com.
We are heartbroken as she is now in an awful mess and doesn't deserve to suffer like this. I hope you find the answers you are looking for and everyone has to make their own choice. x