I’m not sure if this is the right forum. Previously it was thought I had pernicious anaemia (I’m in that forum too) but then they weren’t sure. I am on B12 injections (3 monthly but my levels of that are good at moment). I was referred to Haematologist last year due to low white blood cells. Basically she has been keeping an eye on things originally she thought it was due to autoimmune issues (had thyroid removed, high allergy rate but the P.A. or whatever they thought it was).
In the meantime I had 2-3 years wait for a hip replacement (no cartliage) and it turned out a bone spur had grown off the ball. Anyway it’s 3 months today since my operation- at the 4 week mark the haematologist wanted me to have a bone marrow biopsy incase of a Myelodysplasia Syndrome /leukaemia etc. At the time I felt this was insensitive as I’d basically been house bound for years barely able to walk in a lot of pain. I just wanted to concentrate on rehab. She said this was ok and we would just keep an eye on things and have blood tests every two weeks.
I have no symptoms and haven’t had any symptoms for the whole time I’ve been seeing her. She is still wanting me to have a bone biopsy. I’m reluctant I’ve just got my life back after years of just going to medical appointments. I have asked her what the treatment would be and she said it depends on which syndrome it is could be chemo (which I understand can cause this syndrome?) injection.
So if it can develop into leukaemia anyway is there any point in getting the biopsy done? Or should I just let things take their natural course and enjoy myself without worrying about medical appointments etc.
I’ve attached the previous blood test I had another one on Monday but I don’t have the result as yet.
Just wondering if anyone has anything similar?
Or has any advice or wisdom to share.
TIA.
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Tellingbones
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TIA, I doubt that you have CLL. From your test results it looks more like it could be a MDS (myelodisplastic syndrome) diagnosis, which can only be confirmed by a BMB. The BMB would look for the presence of blast cells as well as looking for morphological changes in your platelets, neutrophils, red blood cells & lymphocytes as well as looking for any sign of fibrosis. Depending on the stage of MDS you could start treatment that would have a chance of delaying advancing to AML (acute myeloblastic leukemia).
I’m no expert but your blood test results do not look like CLL. Lymphocytes would likely be much higher. At least above the range to the far right. Also, the white cell count is usually a good tell and yours are in range according to the right column normal range. I’m not sure what that means in your situation though.
Not all types of MDS have a high risk of developing into an aggressive cancer. But if one *does* have the risk factor for the type that's been associated with the aggressive one, this subset of patients would benefit from closer monitoring, to catch any cancer sooner rather than later.
The only way to test if you have the high risk version of MDS, is to get the biopsy.
The procedure is generally done as an outpatient, no hospital admission. After my first one, I drove back home, a 1 & 1/2 hour trip. Some people prefer to be lightly sedated, which means no driving afterwards. I knew I had to drive, so I had the local anesthetic only.
If, you were only trying to rule out CLL, I'd say not needed. However, you're dealing with something that could go acute. Put up with the inconvenience. it's not just "leukemia anyway". There are no guarantees, that you just get a treatment and it is fixed.
This is only my opinion, but starting ASAP on non-CLL seems urgent.
Thanks Spark I just meant if it’s going to go into leukemia regardless then should I just let things take their natural course.? I agree there are no guarantee’s that is my point. We all die, Im just wondering if things are inevitable why not let things just take their course?
I do understand the inevitable question, I tussled with that myself, at the beginning. That is part of the process of acceptance. But, that's coloring the big picture a little dimly.
If a large truck was headed for you, would you ponder about stepping out of its way reasoning hey, I'm going to die someday anyway, of course not. You are facing the unknown and at this time, and going through with confirming the illness and challenging it, is naturally something uncomfortable you could find out that your inevitable end is greatly out of proportion to reality.
Remember too, that if you start down this road it isn't like you cannot choose later to say, hey, I want palliative care and hospice; I've given it a good try and under full disclosure I understand this is my choice.
Give it time talk with close family, friends, or a counselor/therapist. I think a great portion of the 20,000+ on this forum would agree.
Thanks so much Spark Plug. Yes you are right. It’s not uncomfortable (well I’ve hear the bone biopsy is lol!) it’s more I’m just tired of everything and just when I get one thing on track this is the next thing and I really am trying to go with the flow and I know you are right it could be out of of proportion to reality. I’ve considered this too- which is why I didn’t want the bone biopsy in the first place. I don’t talk to anyone- hence why I posted here. My husband doesn’t seem to have any opinion probably because I was so against it at the start…but i feel pressure from haematologist as every time I go there she asks if I’ve thought about the bone biopsy, and she doesnt want to leave it too late. (?)
I’ve been awake all night and morning and I was so darn tired and every time I’m tired I can’t sleep!!!
I certainly can sympathize with the sleepless nights! It is hard for our mates, they run the gamut, mine hesitates, I think she just assumes I've got this (and I don't), she doesn't want to seem insincere but can't grasp that it's the moral support I need, not another expert.
I try to remind myself, if this is the first time I've lived this it's hers too. And that keeps me grateful.
I'm sorry that you've got this to deal with as well as your recovery from hip surgery.
Unfortunately, Myelodysplastic syndrome (MDS) is a possibility from your results, given that you are not B12 deficient. Very occasionally hypothyroidism can cause similar results and I hope you had your folate levels checked too.
If it is likely to be MDS then I'm afraid that I would say that a bone marrow biopsy with genetic testing is necessary so that you know what you're dealing with. The classification and severity of MDS is complex and depends on which cell lines are affected. Occasionally it's just one cell type but yours may be trilineage dysplasia and the complexity of the genetics will be important in future planning.
Various supportive strategies are available to help you to stay well if needed prior to any treatment that might be necessary and you can still enjoy life but with the knowledge of situations that would be best avoided (crowded venues etc).
I can see why you just want to forget about tests and hospital appointments but a BMB is a quick out-patient job. It is generally uncomfortable more than painful (at least mine was) and the results will give your medical team and you some certainty.
I have CLL and developed MDS from Chemotherapy treatment for the CLL.
I am no expert but having BMB is the only way to truly determine what’s going on. It is not a picnic having one but it has to be done. Your neutrophils are very low but your lymphocytes are normal. Did you ever get a confirmation that you have CLL?
Ok just to update I had a bone marrow biopsy yesterday because the haematologist would not allow me to go on holiday until I had it. All levels have dropped. Find out results next week.
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