Hi all…I’m 45 and was admitted to hospital last weekend with stomach pains whilst here I have been diagnosed with chronic myeloid leukaemia
I’m all over the place …one minute ok next crying …my white cell high so have started me on hydroxycarbamide …how quickly should levels go down? They went down by 1 sat to sun which doesn’t seem much.
I keep feeling sick and having awful rib cage pain …having bone marrow thing tomorrow …what is it like it sounds horrible …
I just can’t believe how much my life has changed in a week 
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Hi,
Wecome, I’m one of the 250k strong BC ‘Club’. Mine’s a Lymphoma so I cannot be specific by experience on your diagnosis but with regard to Bone Marrow tests I’ve had a few. Don’t worry you’ll be in good hands 
Firstly we’re all different so pain threshold, imagination etc. will play a part.
Lay on bed, on side in fetal position with the upper hip exposed.
Subcutaneous ‘jab’ of local anesthesia to freeze. You may also be offered Gas 'n Air.
Now for the action - with a special needle and a bit of pushing the technician nurse will penetrant the hip to aspirate marrow fluid from the bone. If required they then go in again through the same route to get a sample of the bone lining. Job Done!
The new ‘Hole in your Bum’ is again cleaned and a patch applied and advice given regards washing over the next few days.
Now this is where we all differ. For me as the anaesthetic wears of a slight bruise feeling and little more. On talking to others they experience differing levels of a ‘Pain in the Bum’ then its waiting for results. It’s an important test for the Doc’s to learn from.
I hope all goes well for you in your journey and try and keep strong. Progress in treatment s have progressed so much. I had Lymphoma in 1984 and I’m still bumbling around.
PS Keep away from Dr Google, better asking your Med Team or here on BCUK.
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Thank you so much 
I have been getting myself in such a fret over diagnosis dr just been and given me lots of positive news said how treatable it is etc etc and he has no concerns over tolerating the TKI etc…feel a fraud that I shouldn’t have worried so much …I’m a terrible over thinker at the best of times …
Now I’m thinking we’ll if it’s not bad id best get back to work Monday and stop being so daft
I am going home after bone marrow so can’t wait for my own bed …I’m exhausted been such a week x
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Hello @Beagle
I have only just seen your first post. Welcome to the Forum! I do hope that you continue to post and join in with different threads.
Good to hear that your Consultant has been back to see you and discussed your diagnosis and the treatments for CML.
By no means are you a fraud, not at all, and no matter how you are feeling it is all real for you. You are not being daft, had you ever heard of CML before your own diagnosis?
CML is treatable, but it is still a blood cancer and there will be good and bad days. These may be physical or mental good and bad days, so please do go gently with yourself; certainly don’t be rushing back to work!!
Please do let us know how things go for you in the coming days/weeks. Make sure to get some out of hours contact details for the specialist nurses/helpline before you go home, in case you need advice around side effects or symptoms over a weekend or in the evenings. We also have a Support line if you ever want to chat things through, although it is not a 24 hr line: 0808 2080 888 it is free and confidential.
Rest up when you get home, enjoy being in your bed and honestly don’t rush back to work!
Take care, Heidi.
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Hi @Beagle a great big welcome, you are now part of our forum family.
You have just had one of the biggest shocks so no wonder your thoughts and emotions are like a rollercoaster.
You are certainly not a fraud or being daft, so many of us have felt as you are.
I was diagnosed with another chronic leukaemia 19 yrs ago and I can still remember my shock so vividly.
You say your Dr has given you lots of positive news, please listen to it.
Also do tell your medical team how bad your symptoms are
Others have given you great advice and there is a lot of useful information on the Blood Cancer UK website.
Let us know how your bone marrow goes and I find telling my medical team how anxious or scared you are helps.
The main thing is to really look after and be kind to yourself and please keep posting
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I’ve been having lots of rib cage pain I asked the dr about it but said could be bone pain but other CML don’t usually report it …I don’t know what else it could be …ease’s with codeine and paracetamol but can be very intense especially if I’ve had a sleep.
I feel totally exhausted 
Specialist nurses have been to see me explained lots and given me contact numbers ….it’s been such a week
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I also had a GI bleed whilst in hospital needed blood transfusion
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Hi @Beagle , sorry to hear about your diagnosis. With regards the bone marrow sampling it really isn’t anything to worry about. Having a tattoo was far worse, it’s more uncomfortable than painful, or so I thought anyway.
Hope it goes all okay
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Good morning,
I am 12 years on from the ‘1 week hospital, drips, meds, marrow extraction’
There is a casual tone when treating CML now. The meds are so good.
2010 Imatinib trial for 2 yrs and then switched to Nilotinib. I had no side effects.
My Molecular Response became so stable that medication was halved Nov2021 and withdrawn Nov2022.
With regular blood monitoring, 8weekly at present, this is the hope for future CML patients.
All bodies are different but I hope I have reassured you a ikkle bit.
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That is so good and reassuring…Thankyou !!!
I’m so glad that you are doing so well I hope I will respond just as well.
Just had bone marrow …won’t lie it was horrendous but I got through it …given me my tablet imatinib to start today and going home to bed x
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Great to hear that you got though your bone marrow, you did it @Beagle .
A momentous day with starting imatinib as well.
When you feel better I think you should treat yourself.
Please let us know how you get on and be kind to yourself
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Was so nice to be in my own bed after 9 days in hospital….going to have a lazy day I’m still tired after a lovely sleep
Have a lovely sunshine day all xx
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Oh @Beagle there is nothing like our own beds, is there.
Be kind to yourself you and your body have been though a lot emotionally, physically, medically and practically in the last couple of weeks.
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Your story sounded so much like mine except that I am now way ahead of you.
I was quickly sent to hospital with stomach pain ( query appendicitis). The first blood test showed white cells in enormous numbers and then they took three bottles of blood, then seven. They quickly realised it was not appendicitis but blood related. A scan showed my spleen greatly enlarged (which did give me a squashed feeling under my left ribs). The stomach pain was intense but they were not really concerned about it. I was kept in overnight and a bone marrow planned for the early hours of the morning. The stomach pain became worse in the night and I was given morphine but it then suddenly changed to tender but not acutely painful, and they decided that the lymph node had been blocked by the white cells and either burst or pushed through. I had three bone marrow hip holes which they dipped in twice. Once for liquid and once for marrow. One pair was for my hospital to be frozen and kept, one pair for St Thomas’ in London for initial diagnosis and one for an independent lab with more detail given. The St Thomas set was motorcycle delivered at about 6.00am and the results came back about three hours later. The white cell scores had gone up quite a lot overnight moving me into the blast stage but they decided that I was fit and so to try treating me with tablets and hope they worked well, if not then I would be in for intravenous drugs more often.
I was on various meds including hydroxycarbamide for about two months and then moved onto Imatinib. The Imatinib quickly worked in bringing my scores down but then the results plateaued after two years and they nearly changed it but it suddenly started working well again, until my scores were fabulous and those pesky mutant white cells almost nonexistent. I was unlucky in being diagnosed at such an advanced stage but the treatments have worked very well.
I hope you can see that you can be positive about your future. There will be hiccups if you catch any viruses and you need to take care and take time out to recover if that happens. You will possibly have times when you feel weary but again you can learn to manage this and pace yourself. I was back to sports and looking after grandchildren, gardening, enjoying holidays etc after two years.
I think you are heading for the hardest decisions in terms of wanting to get back to work quickly and assuming your responsibilities. Only you can tell when the time is right. I suspect my scores were higher than yours if you are already on Imatinib. I think you will experience some tiredness and you might have no choice but to take time to rest. I was like this for several months but I am older too. Whoever is responsible at work for staffing matters should be made aware that you are conscientious and keen to do your best for them but there are some unknowns and how much energy you will have is one of them. I would also say that consideration from colleagues who have colds, bugs etc to keep their distance from you is important too.
I remember being told that I was very lucky to have one of the best leukaemias because it had been treated for the longest time and therefore the number of people recovering well was very high! I was not sure I felt lucky then but now I am sure that I am.
I will be thinking of you so go feel free to chat as often as is helpful for you. Lots of warm love to you Jo
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Thanks jo …sounds awful what you have been going through …sending you huge hugs xxx enjoy those grand babies xxxx and Thankyou for all your encouragement xx
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Great to hear from you @GrandmaJo and your comprehensive post certainly says it all, and is so helpful.
I hope that you and your family are having fun xxx
Hi @Beagle . Sounds like you have had a rough start and i hope you find your counts dropping quickly on immatinib. I have just passed my 20th anniversary with cml. Now on a reduced dose of Nilotinib. Very few side effects to medication.
I was diagnosed early and my way of coping was to work whenever i could but that was a personal choice for me. You need to listen to your body and brain and do what is right for you. If you need time off then you should take it as pushing through is not always the right choice. I had a few bone marrow tests in the early days and they did vary in pain afterwards so i took the day off afterwards. I had a very understanding boss who i did explain it all too.
All the best x
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How are you doing @Beagle? I do hope you’re feeling better than you were.
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Hi I’m doing ok ….seen consultant on Monday given me oramorph to help with pain explained about my high temps and he says if my body antiflammatory response going into overdrive …still have pain and no energy but he assured me it will ease I’ve just got to hang on .I’ve extended my sick note don’t feel ready to go back to work yet x
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So understandable you’re not ready to go back to work. We have this guide for employers if that’s ever helpful to send them - If your employee or colleague has blood cancer | Blood Cancer UK Shop
We also have a booklet for people newly diagnosed, if it would be helpful for you - Your blood cancer diagnosis: What happens now? | Blood Cancer UK Shop
Really hope the pain eases up soon. Do keep in touch with your haem team and keep them updated with how you’re feeling and ask them any questions you have, big or small.
Our support line is only a phone call away on 0808 2080 888 (option1) if you want to chat anything through.
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