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bone marrow biopsy

Topic Made On: May 21, 2010 06:49pm
Seabecalm

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I was diagnosed last October white rising 34 in Oct to 39 last Monday, very tired, very hot at night, weight loss 5 kl in 2month, consultant suggested bone marroe biopsy to see if treatment needed and what kind of chemo - the thought of chemopherapy very scarey - anyone know what I mean




Replied On: May 24, 2010 12:18pm
smreynard

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I think that it's a bit early for them to mention that kind of treatment but every case is different. My husband's white cell count is 74 and he is still at the watch and wait stage with no treatment even mentioned. I would be interested to hear other members' comments on this.



Replied On: May 25, 2010 08:24am
kestrel

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Hi,everyone I'm reading this and seeing White blood cell counts well below mine which was 130,and that was in March this year.I have not lost any weight,but saying that I really could do with losing some.I also agree that not everyone responds in the same way through the stages of CLL.I'm looking at Seabecalm's case I think trust the consultant.I too am facing chemo possibility this year.Of course its scary,but your not alone!We are all in the same boat and need to support each other.Not all is negative



Replied On: May 25, 2010 06:26pm
sassy1261

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I think I would make sure that my specialist is a CLL expert, not all haematologists are. CLL Support Association, (easy to google) has a list of these. 34 is not very high, so perhaps there is something else. Anyway, you can always ask for a second opinion. My wbc is only 24, I get some night sweats, have not lost any weight but always tired, still on watch and wait, have a telephone call tomorrow, our hospital do that to let you know your blood results. I keep a chart of my results and as soon as I think necessary will ask to be changed to Cambridge, where my nearest CLL specialist is. Hopefully that will not be for some time.



Replied On: May 26, 2010 08:02am
Admin

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I was diagnosed four years ago. Recently my WBC was 34. I too am still in the watch and wait stage. I agree it sounds too early to consider chemo, but your markers may be different than mine.

Post on behalf of a member.



Replied On: May 26, 2010 10:21am
Seabecalm

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Thank you to everyone who commented on my bone marrow issue, I had the test done on Monday, not too pleasant, done under local on the hemo ward of my hospital, Eastbourne General, I see the consultant in 3weeks so wait and see some more! I think, if I can I will hold off from treatment until really necessary, I can cope with life at the present, no real problems, its so great having this site to share with all you guys, thanks



Replied On: May 26, 2010 11:05am
pastongriffin

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I just finished treatment with a bone marrow biopsy. My wbc was 50 at the start of treatment but my bone marrow was 70%. I was not sure about starting treatment but I wouldn't have known it was necessary unless they did the biopsy. It is now 0.4% and I was on the Rituximab and chlorambucil trial at Cambridge. It was very important to see a CLL specialist for me.



Replied On: May 28, 2010 03:58pm
Seabecalm

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thanks I will post my results from the biopsy when I get them, I dont know what Pastongriffin means about the 70%- whats "normal" hope I find out when I get my results



Replied On: Jun 13, 2010 02:25pm
Seabecalm

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as a matter of interest, does anyone know if bone marrow transplants are from relatives for just matched from doner list?



Replied On: Jun 14, 2010 08:26am
Twadd3

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Transplants can be from either, depending upon who matches. Relatives are often tested as they are easier to access and siblings of same parents have a 1 in 4 likehood of matching.



Replied On: Jun 14, 2010 08:17pm
Seabecalm

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ok, saw the consultant today, so so, bone marrow results show me to be intersilitial inflitralia - white bloods up to 44 - still low ish, but glands very enlarged- he is suggesting FCR starting in September, ( I am on holiday during July, so start in September) I dont know what others feel, but I feel crap, so low on energy - poor sleep, lost about 2 stone - dont mind about being overweight but would rather be healthy with it -I exercise everyday, walk for an hour in woods with my dogs , two teenagers to chase around, I do not have any living relations)your feed back much appreciated



Replied On: Jun 15, 2010 11:14am
pastongriffin

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I started treatment last September with night sweats, frequent infections and weight loss but by that time I couldn't walk or drive far.....even so, I am glad I held off as long as I could....chemo definitely has made my immune system much worse and now I need further treatment before I can go back to work. If you haven't got a second opinion from a CLL specialist yet, I would do that before starting treatment. There is a list on CLL support association site. The problem is, once you start on treatment, there is no going back...but if your quality of life is poor, you may have no choice.



Replied On: Jun 15, 2010 11:34am
smreynard

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Since I posted a reply on here on May 24th, we went to the hospital last week and my husband's white cells have shot up from 74 to 125 since March! So he is now having a bone marrow biopsy next Monday with FCR treatment to follow commencing three weeks after. It's been a big shock as we'd been told he probably wouldn't need to start treatment until 2012. Does anyone have any ideas as to what makes the white cells rise so dramatically?



Replied On: Jun 16, 2010 08:16am
Robert Cork

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Seabecalm

I completed 6 rounds of RFC 18 months ago. The reason for treatment was that my HB and Platelets were falling, felling unwell and losing weight.

You might say that I was fortunate to go through RFC with no major complications. My only recommendations would be to make sure that you have all of the regular medications Allopurinal, Antibiotic cover - Septrim, and anti sickness tablets. I was also fortunate to receive monthly injections of GCSF to help keep my neutrophils above 1.0. This was prescribed irrespective of me needing them or not.

All the best

Robert



Replied On: Jun 16, 2010 08:27am
Robert Cork

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smreynard

I am unable to answer your question directly, but would offer the following.

It not soo much how high the white cell is that necessitates treatment but other factors such as:
How low the HB and Platelets are.
Spleen and node enlargement.
How compacted the marrow is.
And how well the patient is.

Just as an additional thought, has your husband had his prognostics markers checked?

Regards

Robert



Replied On: Jun 22, 2010 09:32am
smreynard

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Thanks Robert. We have now got the letter from his last visit. He also had his bone marrow biopsy yesterday. I presume that will check his prognostic markers? Anyway, the details are:
HB 12.0 WBC 125 Platelets 137
Spleen is palpable 8cm below the left costal margin, which has increased, he appears to have lost some muscle weight.
Quote: "I have arranged to check bone marrow aspirate, trephine biopsy and FISH studies for p53 and ATM deletion. I am also checking creatinine clearance, and LDH, calcium, urate, beta 2 microglobulins and CRP. Review in 3 weeks" I think you know what all this means better than me!



Replied On: Jun 23, 2010 07:23am
Robert Cork

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smreynard

You are certainly having all of the correct tests. These should help in defining the right treatment.

Regards

Robert



Replied On: Jun 23, 2010 12:50pm
Seabecalm

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Robert, you seem to a mine of information, thank you for all you do, can you tell me what range the normal hb level would be within. my consultant has said to start RFC - I have enlarged nodes neck, underarm and groin(occasionally) - have a great deal of difficulty getting my head round whats going on - the consultant did not give me specifics from my bone marrow biopsy, I should have asked but I was stunned when he said I should start treatment - I am getting a copy of the letter from my GP so I can keep a proper record. thank you, Brenda (seabecalm)



Replied On: Jun 23, 2010 05:01pm
Robert Cork

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Brenda

The normal reference range for HB is 13.8-17.2 and for completeness Platelets are 130-400. You have to remember that these general reference numbers and different labs will have different numbers.

I find that my triggers for treatment are:

Falling HB below 10 I just am unable to function due to the lack of energy
Falling platelets When my platelets fall below 80 I know that treatment is around the corner.
Enlarged spleen Once my spleen gets to about 4cm below the coastal margin I start to get discomfort in the left hand side of the chest.
Weight lost I find that I will lose around 10 kg prior to treatment.

I would certainly get hold of a copy of your results and hopefully they will define the key indicators of your specific CLL.

I completed RFC about 17 months ago and whilst apprehensive regarding the treatment I had only minor problems.

Regards

Robert




Replied On: Jun 23, 2010 08:34pm
Seabecalm

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thankyou



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