UK CLL Forum, UKCLLFORUM

Bone Marrow

Topic Made On: Oct 19, 2013 06:34pm
Aqua62

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Hi I am new to the forum, I was diagnosed with CLL around 4 years ago. I have to have a Bone marrow biopsy next week & am really scared. Has anyone else had this? is it very painful? Any advice would be really appreciated. Thanks




Replied On: Oct 20, 2013 09:55am
kestrel

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Hi,yes I've had the bone marrow biopsy a couple of months ago.Its a little painful,but word of advice make sure you shave your lower back both sides because when I had it done they did not shave my lower back and trying to get all the adhesive from the bandage off was much worse than the procedure.I see you female you may not be hairy like a male but still shave the area.Stay perfectly still during the procedure.I hope all go's well regards Lee



Replied On: Oct 20, 2013 12:49pm
Domineys

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Hi

My first biopsy was in 2001 and, yes, it was pretty painful - but I've had two or three more since and I think the medics are better at it now! I find it helps to try to be as relaxed as possible - a tough ask for your first time. As Lee says, keep very still. There's usually a nurse available to hold your hand if you fell you need it. I think I found it helped the first time. Good luck. Ann



Replied On: Oct 20, 2013 05:21pm
lesleyandrea

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Hi Aqua

You asked the question I was worried about. I was told last week that after 4 years on Watch and Wait, my spleen was now affected so chemotherapy is pretty certain and probably to start before Christmas. I have to see my own Consultant this week for confirmation. Inevitably this will mean an initial bone marrow biopsy and I think this is what's bothering me most, in particular how you feel immediately afterwards as I have a long journey home with two train changes. Any advice would be gratefully received



Replied On: Oct 20, 2013 07:24pm
lchanney

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Hi,
I've never had a biopsy - I asked my consultant when i was diagnosed if he was going to do one and he said "No - because all I'd get would be pink soup".
My doctors have relied a lot more on the blood count, which if you don't know about it, repays a bit of study. It's just a matter of extracting a bit of blood from your arm, and the report the doctor gets tells them the name of the cells involved, what the reading is, and what range it should be. Any CLL patient is going to start off with high lymphocytes, and the first objective will be to get the number down - maybe by use of chemotherapy. Which is another word to learn about and not necessarily be scared of. There are lots of drugs available, most of them aiming at poisoning the cancer cells without harming YOU too much. I started off on Chlorambucil which is a tablet, and it got my numbers down to about 60 - much better than 3 figures but not low enough. So then I was moved onto other drugs which successfully gave me a 4 year remission. One of these was a monoclonal antibody - NOT a poison but something which recognises and "labels" the cancer cells so that the body's own defences recognise them and say "Look - there's one - let's go and get it!" Most monoclonal antibodies have names ending in MAB - the most common being Rituximab. They are given by a pipe into a vein via a drip. Your medical team should be watching for side effects, one of which can be a drop in the number of neutrophils - these are a major plank in your immune system, and if you don't have enough it is possible, but not certain, to catch things that your body would normally shrug off. One way to avoid this is to avoid unnecessary social contact. I've taken to having groceries delivered rather than having trips around a supermarket.
As regards travel and wellbeing, all I can do is wish you all the best and say, have someone with you if possible - but it may not be necessary. I live 33 miles from our main hospital, I'm now back on chemo, and altho my other half has come with me on the first two occasions I decided I was OK to drive myself for the remaining 6 (it was an 8 infusion course).
So all I can say for your journey is keep warm, keep safe, maybe take a thermos with you so you can have a warm drink, and VERY BEST WISHES!
Lawrence



Replied On: Oct 21, 2013 12:29am
Chonette

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I have had 8 bone marrow biopsy during my cll life, non of them were painful, it feels a sort of sting like nettles when they extract the marrow.
I think it depends how skilful he doctor is, I had them with just local anaesthetic.
all the best
Chonette



Replied On: Oct 21, 2013 09:15am
Aqua62

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Hi all, Thankyou so much for your replies & so quick too. I am so glad I found this forum, you don't feel quite so alone do you, My GP has given me a couple of Diazapem to take just prior to the procedure to help me relax so I'm hoping this will really help. I will let you know how I went on



Replied On: Oct 26, 2013 01:25pm
Aqua62

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Hi again, well I had this done on Thursday & although it wasn't very pleasant, it wasn't as bad as I thought it would be. There was a lot of pulling & tugging when they took the bone biopsy & although a little painful it was certainly tolerable.
Lesleyandrea, re afterwards for about 3/4 hours I had no discomfort at all due to the local they had given me, after that I did gradually get quite sore & alchemy around where they did the biopsy & across the bottom of my back. Still am a bit tender but again it was all very tolerable. I am pretty sure you will be ok travelling home. Best Wishes Aqua62



Replied On: Oct 28, 2013 07:12am
Admin

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Posted on behalf of a member.

I was diagnosed six years ago. Since that time, I have had breast cancer -- 'barely' stage II since my lymph nodes were enlarged. I did not follow the protocol of having all left-arm nodes removed. ( I live alone. I have had Jack Russells. If any one of them got into a brouhaha I would, and have, jumped into the middle --- obviously, I am an idiot!)

In July I had my thyroid removed. One of the tests showed a ??? node. The node was cancer but no lymph nodes were affected. Margins were clear.

Last week I went to my oncologist for the usual tests. All of my levels were better than I ever thought possible.

Perhaps my little dog Oscar, a rescued Yorkie, has something to do with that. Actually,I believe Oscar rescued me.

I wish you the best. Stop worrying is my advice.

Salainte'
Oscar's Mama

Please remember that each person/case is different. I am so happy to learn you have gone through the bone marrow testing so well.



Replied On: Oct 28, 2013 02:12pm
lesleyandrea

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Hi Again. Really glad that Aqua62's biopsy was better than expected so that's one box ticked, ready to move on to the next hurdle. My reason for posting is that I went to see my Consultant on Friday ready to discuss the date of my bone marrow biopsy and the start of my Chemo treatment (fludarabine, scyclophosphamide and rituximab) when he threw me a curved ball by saying if I felt I could wait until the New Year I might (its random selection so only 50% chance)be selected to go on a Trial which cuts out Chemo altogether. Apparently the trial is called Flair (I think that's the spelling)and you take a pill everyday for six years!! Has anybody else out there heard of this trial or better still is on it. I can't find it on the internet. I've contacted my Consultant's secretary and asked for details but possibly is so new I'm one of the first - dare I say it - guinea pigs. She certainly hadn't heard of it yet. When he mentioned it I thought he was throwing me a lifeline but after thinking about it I'm not so sure as I took part in a trial two years ago (CLEAR) which was sold to me a potential cure but obviously wasn't. I don't really want to spend the next three months on a maybe when at the end of it I could potentially have been halfway through my Chemo.
I could discuss it more fully with my Consultant but as he's running the trial I do wonder if - whisper it softly - he maybe has a vested interest so will only give me the most optimistic information which is definitely what happened last time.
Any advice, thoughts, or personal experience would be gratefully received.

Regards to you all and Take Care.



Replied On: Oct 29, 2013 08:23am
Dave3579

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hi Lesley Andrea You are not alone in needing treatment early and soon! I have also been advised that I might have to start FCR shortly. I have also been penned in for the Ibrutinib V FCR trial starting in January if I can hold on, which I assume is the Flair trial you mention. The advice I and someone else I know who is in a similar situation to you, is to volunteer for the Flair trial if its the same Ibrutinib Versus FCR trial. Ibrutinib has been well trailed in the United states with the patients tolerating it very well and getting very good result without the need for chemotherapy which is what FCR treatment is. my advice is to head towards the health unlocked site where this is a topic that has been well discussed Take good care Dave



Replied On: Oct 31, 2013 01:13am
lesleyandrea

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Hi Dave3579

Thank you so much for taking the trouble to reply and it's pointed me in the right direction. I'm very grateful. You had jogged my memory about the name of the drug - I wasn't taking a lot in when I was with the Consultant as I had been so focused on chemo - so I can move forward to see what I can find out. I'd be interested to know how you get on and fingers crossed you are accepted as I gather it's not a certainty for any of us. Many thanks again.



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