If you are worried about blood cancer, concerned about signs or symptoms or waiting for results of tests or scans.
Hi i am 64 and have CMML.I have been told that i’m high risk of transforming to acute AML and therefore need a bone marrow transplant possibly this time next year.The problem i have is i feel perfectly well apart from occasional hot sweats and itching.They have been unable to find a perfect match both among my family and on the register.At mine and the families request i will have 6 weekly blood counts and another bone marrow biopsy to check the degeneration.My question is,is there anyone on here who had the transplant while feeling quite well or has everyone got to a point were they welcomed the transplant.?The predicament i have is that i may be asked to choose to give a couple of years of relatively good life up for an operation that ,in the end,may not work.
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Hi Colin, I cannot help you but we are all here to support you and this is the right place for you to post. It must be horrible for you living with the unknown and a million dollar dilemma. However the Bloodwise support line is free from UK landlines and mobile phones on 0808 2080 888 and they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm, but you can get in touch whenever you want and leave a message and they say they will get back to you within one working day. Take lots of care and keep posting.
Hi. I’m not sure if this is the right place for me to be.
I was diagnosed with high blood pressure in April of this year. I’ve had an extended period of stress/trauma and had out off getting checked as put it down to this.
Due to the high bp the GP requested blood tests and these showed up inflammation. Bloods re checked and inflammation still raised so more test ordered to check for causes. Also from June-August I suffered one infection after another chest, sinus, throat and was generally unwell and lethargic with 2x kidney infection. This was unlike me.
One of the blood tests showed raised IGa so lab requested bence Jones which was negative.
Gp then had bloods repeated x2 weekly and decided to refer to haematology. Got an apt for 8!wks time which I had on tues this week. The Dr then mentioned paraprotein but said they are very low only 2%.
Consultant has looked at bloods and ordered bone marrow biopsy next week and has said we’ll then know if it is MGUS or anything else but said she wouldn’t put a name to it until we know.
My full blood count was normal and she seemed happy with them. She noted the recurrent infection and inflammation and joint pain and other aches and fatigue that I have just put down to stress and never discussed with my gp really. I’m a single mum early 40’s and just trying not to get carried away with myself while I wait. I’m guessing it’ll be confirmed as MGUS and regular checks.
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Hi, welcome to our community forum where we support each other and I have found the posts interesting and informative too. I do not know what your clinician will say to you, but what you do seem to share with a lot of us is the apprehension before medical appointments and also I recognise how my mind goes off in all directions with scary emotions and thoughts. Let us know how you get on and be kind to yourself and have the odd treats.
Thank you, I think I’m more worried about the actual biopsy than the results to be honest. I just would like to know where we’re at because I know often the worry is worse than the reality.
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I certainly agree that my worry is worse than the reality, I hate being out of control. We are here to support you so please let us know how you get on.
Thank you I really appreciate it x
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Hi Jenwren, I appreciate that this is an old post, and much will have happened in the interim. However it is sometime worth reiterating views and suggestions, I think, as it may be of value to more recent sufferers of a particular problem.
With regard to ‘Waiting times’, my biopsies results have usually been about two weeks, sometimes sooner.
I emphasise with you, as do most people on this Forum, I suspect. We have all gone through or are going through the ‘Long Wait’.
There is no easy answer, and some find it easier to deal with than others.
I find exercise and music help me enormously, and you may find something that suits you, and helps take your mind off things until the result.
Some, can ‘Compartmentalise’, and shelve problems till they need confronted. ( I am managing finally to do this, but it is tough, but well worth the effort.)
I hope you are in a much better place than you were four years ago.
All the very best. Ron
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