UK CLL Forum, UKCLLFORUM

FCR and arthritis

Topic Made On: Mar 30, 2009 08:19pm
janee

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Last year I asked if anyone had any problems after having FCR in 2006/7.I went into CR in January 2007 but as the year went on my left hip started playing up,I was diagnosed with sciatica.It just got worse and to the point where I was confined to a wheelchair.My GP just kept saying it was sciatica and referred me to Physio,this went on for 12 months until I saw a locun dr and he advised that it was my back.I went to see the SpinalSpecialist last October and he xrayed my back and both hips.My left hip had disintegrated and I needed a total hip replacement,the dr said that the chemo had played a huge part in the destruction.My op was on 17th January and all went well,all my counts are still very low and I didn`t even need a transfusion even though I`d lost 1.5 litres of blood.Last week I went to Oncology for my 6month check and they were pleasantly surprised that the counts had only risen marginally(lymphs-2.7,neuts12,wbc256)So 2 years on and I`m still in CR and I only had 4 rounds of FCR,and like you my counts went right down after the first on but I had to have the 4. Janee




Replied On: Mar 31, 2009 02:10pm
Robert Cork

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janee wrote:
Last week I went to Oncology for my 6month check and they were pleasantly surprised that the counts had only risen marginally(lymphs-2.7,neuts12,wbc256)So 2 years on and I`m still in CR and I only had 4 rounds of FCR,and like you my counts went right down after the first on but I had to have the 4. Janee


Jane

That's one hell of a Neutrophil count = 12.

Robert



Replied On: Mar 31, 2009 07:40pm
Greengrass

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Janee, that sounds a terrible experience.Hope you are ok now!
Robert, can you advise as to the technical language : viz. WBC = White Blood Cells ; CR = complete remission;
FCR ?. Why is the Neutrophil count unusual and is the wbc count of 256 acceptable ? Thanks.



Replied On: Apr 01, 2009 04:14pm
Robert Cork

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Greengrass

Neutrophils
The normal range for neutrophils are 3 to 7, however these reference ranges vary slightly from lab to lab. Normally with CLL, your neutrophil count will slowly decline as the disease progresses as a result of the bad lymphocytes crowding out the other cell lines (HB, Platelets). Therefore having a neutrophil count of 12 is quite unusual.

White Cells
Having a white cell count of 256 is also very high, but many CLL patient can manage their condition quite well provided that the high white cell count does not interfere with the production of other cells lines (platelets, HB). A lot of Haematologists will consider this as an upper limit for treatment, but IMHO this would only be necessary if other cell lines are declining or the patient if feeling unwell.

RFC
Abbreviation for Rituxan, Fludarabine and Cyclophosphamide.

Regards

Robert



Replied On: Apr 01, 2009 07:29pm
janee

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I put the figures for my blood counts without looking at my last results and now looking at your replies realised that I had got them wrong ,many apologies as my memory isn`t as good as it used to be.All is well at the moment though still haveto keep vigilant with my health and hope that things keep as well as they are now.Hopefully the arthritis is now under control and I wont need any more surgery.It helps now to ensure that all types of questions are answered properly before anymore treatment is nessecary in the future.
Janee



Replied On: Apr 02, 2009 10:49am
Greengrass

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Janee, that's great. I know how you feel memory wise ! I always mean to buy a little notebook to write down what I need to do but keep forgetting when I'm in the shop!
Best wishes.



Replied On: Jul 22, 2010 09:38pm
janee

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Since I last wrote here I have been diagnosed with arthritis in my feet and my right knee has been eaten away,until I had FCR in 2006/7 I was healthy as I could be with CLL,walked gardened and worked now I have hadto give up work not through the CLL but through Arthritis which only happened late 2007,speaking to my specialist nurse the chemo had nothing to do with it but to me it`s too big a coincidence.I last saw my onco;ogist in March and my counts are still well within the normal limits so for me the FCR has done its job so far.I keep a 6 monthly appointment with the department but see a specialist registrar as myconsultant wont have anything to do with me because I wouldn`t go ahead with a SCT.



Replied On: Jul 25, 2010 10:32am
Admin

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Posted on behalf of a member......

Forgive my ignorance but what is a FCR ?
I've had Arthritis (osteo) coming on since my early thirties. Yes
It is far more disabling than the CLL diagnosed in 2003/4 every sympathy!
With me the Osteo Arthritis runs in my family so am not suprised I've got it too. In the Genes ' as they say!

Had four right hip operations before It was ok
During blood tests for one of these , my WBC was noticed & was referred to the Haematologist for diagnosis. It was CLL

Now have had left hip replaced too and think my knee will follow later this year or next!
Having left carpal tunnel op next week.

Had right hand done 6 weeks ago! So glad my bloods are good and Ive survived all ths surgery without any infections or setbacks.
I found the Buteyko breathing method Very helpful.
www.learnbuteyko.com
For anxiety & breathing.

So also had scans to no bad effects
So take heart.
Do email me for any further contact be happy to make new friends.
We have a local Arthritis Support Group too. Also a magazine called
Arthritis Research. I can put you in touch if you like.
I've still not had Chemo.

For my Arthritis I have found
Glucosamine Gel excellant it even helped a locked thumb move after Several weeks application.

Valerie J L. East Sussex



Replied On: Aug 20, 2010 10:02pm
fossil

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Apart from CLL. I have Advanced Degenerative Bone Changes? T12 Disc is a compression fracture, the CLL has gone into my spine. I have coronary heart disease/Stent in the main artery. I am developing cataracts. Lately have had hearing aids fitted. And I have skeletal hot spots?? Other wise I am as healthy as a Pig! But bear in mind that I am 71 at the end of the year. Isn't life great. Keep on smiling.



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