CLL Support Association

CLL bone marrow

how many folks here with CLL have had a bone marrow biopsie?

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A BMB is what was used to diagnose me. They are not used as much as in the past as the flow Cytometry and FISH tests can be done from blood draws, but for some cases they are still important.

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Thanks.

Isn't CLL something that unless/until I have symptoms I should ...well, wait for symptoms? before treatment, I mean... before a BMB, too, right?

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I would say, if you have one at all, wait until just before starting treatment. I am no doctor, but I don't really think a bmb is necessary in most cases because of information that can now be obtained from blood tests. I had one right before starting treatment because my CLL specialist was concerned I might have myelodysplasia (I didn't). And if I did, that would have changed the course of treatment. But I would have said no to a BMB if the only reason was to find out % infiltration. By the time you need treatment, you know your infiltration is high. It is not necessary to know if that number is 85% or 95%. Treatment will be the same.

On a side note: my bmb was not painful either during or after. I have had blood draws that were more painful than my bmb. But there is a lot of variation in what people experience with a bmb. And if I ever have another, it could be a different story.

kim

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I had one right before starting treatment.

Virginia

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I had one when first being diagnosed was not the most pleasant experince but my thoughts are it was a more acccurate test and a benchmark for where I currently stand. I would expect that I would not need that done again until I was at the point of treatments

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I've had both bone marrow and lymph node biopsy. The bone marrow was not as successful as the lymph node. It failed to produce a viable sample for FISH testing. My dx is SLL, so the lymph nodes carried the greatest disease burden. Also, the bone marrow procedure was not really painful.

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Same here, though I had a viable sample for FISH. Had both right before treatment-results determined the treatment I received. Also CLL and SLL. Started with rituxan but relapsed after third maintenance, and then started gazyva and doing well on it so far.

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Had one prio to treatment.

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When the Dr. I was seeing decided I was at the time for treatment, I had a BMB.

As it happened, though I have not had treatment.

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I had one 10 years ago and still on Watch and wait.

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Hello all responders, and thank you so much.

they started watching my Wbc more than a year ago, maybe 2.

Then they sent me to a hematlogist, Florida Cancer Specialist, Naples, FL, --i had blood draws there up until last July.

I stopped going when they told me I need a BMB, to see more what's going on...is all i know. I'm a big baby... now that I'm out of the service. In fact the VA are the one's sending me to the Center. Sometimes I think they just want to get ppl "in the chair" ... like a $ mill.

I tried to ask: before you pierce all the way into and remove some of my precious marrow (spiritual, right?) ... I asked: what about ZAP70? what about any other testing first? CAT (?) scan? maybe CAT (?) isn't needed because maybe a doctor can feel that nodes are not swollen?

So, I told them to have to BMB ppl call me, because I read that maybe they give a high anxiety person like me something calming first. They never called and I felt my questions were unanswered. They probably think it is so routine... and so ...don't like me or something (my voice is like a lawyer or something). I am going back in late December simply to talk to Dr about these issues.

Last time I went, in July, my wbc was 80,000. My regular Dr just did one 2 weeks ago and it is 135,000.

As far as I can tell, I have no symptoms. Only that I feel kinda tired and listless. HOWEVER, I am not sure I am a good judge of that because all I do is sit and sleep, go to store. Very little exercise otherwise. I am living off my previous good health, I guess.

I do have many, this is somewhat new, tiny bites, either mosquito or my home has some mites or something-this does not really bother me, it may just be old mosquito botes that after scratched to bleed take a ling time to heal. Yes, i have mosquito bite scars, from scratching. It's only from my knees down. I am a mosquito magnet. I scratch until they bleed. My clotting is fine. I think other things in my blood is fine--except some amount of hypothyroid...which may be the cause of some of my skin conditions.

I don't know what to do other than ask my questions Decemember 21.

Last 2 weeks I had one my (sometimes 2 per year, sometimes 1) sinus dump. I fought it back better and faster than usual. But my regular doctor called me 3 times telling me to go to ER. She said to allow hematologist to check me and if I had an infection it could be dangerous. I did not go, needless to say. Because I am "fine."

When I first started going to the hematologist at Cancer center, a different doctor then, he said I would probably die of old age before needing treatment and that I didn't "have to" come back...or maybe once a year.

This is SW florida -- the dying, old ppl, place. I am only 63.

It worries me, Idk what to do.

Thanks for reading.

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I live in west central Florida not too far from Tampa. I was diagnosed 10 years ago and still watch and wait. I go to Moffitt Cancer Center in Tampa. My WBC last month was 127.5 My red cells are hanging in there. A week ago I had to have the first of 3 ivig infusions because my IGg was 586 and I can't seem to fight off a sinus and bronchitis infection that started 7 weeks ago. The iGg should be 700-1300. Except for periods of breathlessness and fatigue at times I feel ok....or should I say did before this sinusitis / bronchitis thing. When my primary doctor said I had cll he said I need to see a hematologist and that I needed a bone marrow biopsy which I never did have...first hematologist up north 10 years ago said I didn't need it. I think (my nursing opinion) that my shortness of breath is due to enlarged lymph nodes in my lungs and behind my breast bone so, sometimes I feel like my heart is a little racy because it's working hard to pick up oxygen in the lungs. When this happens I take 12.5 mg of a beta blocker metropolol. They say treatment shrinks these nodes and breathlessness subsides. Still I'm hoping to avoid treatment for as long as possible....sidenote: a reknown doctor at Cornell Weil Presbyterian Hospital in NYC believes no patient with CLL should have to undergo strong chemo....if on the other hand one was going to get a bone marrow transplant then one would need chemo to kill off the bad stuff first.

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Have you seen a cardiologist about your symptoms and had an echocardiogram? Your symptoms could be more cardiac related (maybe a valve prolapse?) If you truly believe that enlarged nodes in the lungs are the issue a CT scan, as much as we avoid them when possible) might be advisable. One friend is here today because the scan required by her trial found lung cancer. Better to have concrete answers than to guess when we can get them.

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Ladydi - I live in southeast FL and after a check up in January, my oncologist is going to discuss more about me going to Moffitt Center for second opinion. Are you pleased with the center? She said they will take blood, probably Petscan and may take sample of bone marrow. I had bone marrow test when I first got diagnosed 10 years ago. I am 63 this month,been on W&W. WBC was 120k in Oct. Oncologist said chemo will be soon and is sending me to Moffitt. I have a lot of energy, nodes have popped up..none ever biopsied. No nite sweats. Confusing since I feel so good. Dread the thought of chemo. By the way tedro...the BMB was not uncomfortable for me. I remember being so nervous and then thinking, wow that was nothing. Hopefully it is like that for you and my next one.

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I see Dr Javier Panilla at Moffitt and like him alot....Easy to talk to. I'm about 11 years since diagnosis. I'm still W&W. I never had a PET scan or a bone marrow biopsy. My WBC is high 127.5 but mm y red cells are holding their own. I hav e been fighting a sinus and bronchitis infection for 8 weeks so had to have an ivig infusion recently with 2 more scheduled. This was because my IGg was low. Since I have known about this disease I haven't had any night sweats or fevers. Is there a Moffitt in southern FL or will you be coming to Tampa?

Best regards,

Dianne

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Dianne...no Moffitt near me. Will be going to Tampa. Interesting you haven't had Petscan. My first was 9 years from diagnosis. Due to nodes popping up. Then had another one this past summer to compare. Plus I was diagnosed with gastroparesis in June and oncologist wanted to make sure if anything going on so she ordered the Petscan. Luckily no changes. Dr. said they may want to repeat at Moffitt.

Hope you feel better soon!

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Hi,

These are great reports, thank you!

Whst is ivig and also IGg?

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IGg is an immune gamma globulin. Mine was low so the ivig was given by iv to boost my immune system and hopefully clear up my sinusitis and bronchitis. I'm a little better but still coughing alot. .....I have 2 more scheduled at Moffitt Cancer Center in Tampa.

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thanks, got it!

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I had one 4 years ago.

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I had one prior to treatment. 2016.

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Almost anyone who has participated in a clinical trial has had at least two bone marrow biopsies, one before treatment begins, one after a designated period of time, perhaps a year into the trial. Since measurable data is the only way to truly document the success of the drugs, BM biopsies and CT scans are part of what participants agree to when they sign on.

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I am on my second clinical trial and have had four BMBs. I always ask for (and get) sedation. But plenty of people don't.

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I’ve had five bone marrow biopsies.

One just before treatment with FCR in 2012 and one three months after the end. Used this way it shows the effect of the treatment on bone marrow.

I had one last year when we were sure I was relapsing. I joined a clinical trial on 15th Feb 2017 so had one the day before and I had one on October at the ‘six month’ checkpoint.

best, rob

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Rob,

You had symptoms? If so, when did the symptoms start?

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Sorry for delay responding, been away for a few days. Yes, I had symptoms, the symptoms were what caused my diagnosis. The fact that I have CLL came to light from a random blood test I had as a result of a persistent cough, Happy to share symptoms if you want but don’t want to put a losd of detail in if nit interested.

The first bmb was the day I started FCR treatment in 2012. The second was three months after the end of the treatment. This is the only way of seeing the effect on bone marrow of the treatment itself.

On to Decempber 2016 I had relapsed and consultant decided, with my agreement to see what the marrow infiltration was. By Jan 2017 I had decided to apply for a trial and was accepted in early Feb 2017. So, once again I had a bmb as a base starting point prior to treatment. The trial protocol requires a bmb every six months so in September I had the fifth one.

hope this helps, rob

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Thank you.

I'm very interested.

So, did your initial (first) diagnosis indicate you were "high risk"?

You've already helped me, so please if you don't want answer, I completely understand.

Best Wishes for Recovery!

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Sorry, not quite sure what you mean by ‘high risk’, I’m going to interpret it as ‘poor prognosis’. After 17Pdel/TP53. then I believe 11Q is viewed as next in the poor prognosis scale. My consultant was very clear from the start that with FCR and the new drugs coming along the significance of 11Q is reduced.

We also started out with an agreement that his job was to treat me as best he could and mine was to get on with life. Over the last five and a half years I’ve come to not only accept the deal he offered but to understand it. I thought I understood it when he made the offer but now I really do.

Latest update, off for checkup with research team running my trial on 19th Dec then review with consultant on 19th Jan (my humour allows me to see the funny confusing side of that!)

best, rob

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Bone marrow biopsy diagnosed CLL. My white blood cell count was decreasing. (which is not the norm) I am doing another bone marrow biopsy next week, I finished FR therapy six weeks ago. I remember the last one feeling like someone had kicked me (bruising like feeling)

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I was very anxious about the Bone marrow biopsy, but it wasnt a big deal in fact. There were a couple brief moments where I said “ow!” but they were very quick to pass. For a few days after I was achy like having typical lower back achiness but you can take tylenol. I will need to have more of these and now that Ive experienced one I’m not really afraid of it.

I’m glad that I had it as I have no physical symptoms and my blood tests were not hugely outside of normal range, so it was hard for me to feel certain that I needed treatment. The bone marrow biopsy confirmed the high infiltration.

If you are avoiding medical care due to high anxiety, meditation practice can help tremendously. I still get anxious every time i go to a medical appointment but through my meditation practice I have learned how to manage the anxiety without shame and to worry a lot less. Meditatiom practice has been an emotional life saver for me and many others. additionally, finding a meditation group in your area can be a great source of community and support.

Best wishes for health and wellness-

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I have a meditation relaxing CD I listen to it's called Steven Halpern Deep Theta which helps with anxiety

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I had a bmb a week before starting trial treatment

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Yes.

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I had one in mid September 2017 - before starting treatment. I'm in a trial at M.D. Anderson and will have to have one every 3 months - which is coming up. I was mortified about having one but it turned out to be nothing to it. I guess they do so many of them and are very experienced but it could depend on who does it. Good luck with your journey.

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Thank you for brining the BMB subject up I will be having one early 2018 when I will be screened for the FLAIR trial. These posts have reassured me. Good luck if you do have one.

Ann

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I have had 2. Hurts but not too bad. Going to have a Martini before next time ...

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I was diagnosed on the bloods, but my hameatologist was experienced and 'old school' so gave me a BMB before and a bit after treatment. He felt this gave him a better idea of how well the treatment had worked, though modern thinking seems to be that blood tests are sufficient.

Because he was a competent old hand, the BMBs didn't hurt - 'slight discomfort' is as high as I'd put it. Since the results showed that the marrow had recovered from 90%+ infiltration to an undetectable level, it was worth it in terms of the reassurance it provided.

I'm still in remission 5 years later (BR chemo treatment).

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I had a bone marrow biopsy this past Wednesday, Nov 29, 2017. This for my CMML. I'm not sure what you're asking so my answer might be irrelevant. This is my 4th bone marrow biopsy. I think that for the CLL my test was a lymph node biopsy. I don't think that I've had a BMB for the CLL but it is difficult when you have more than one cancer going on to keep what is going on straight.

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During my 7 years in treatment I had 12 bone marrow biopsies. Currently three weeks from celebrating 5 years in remission.

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Hi all,

This is great. If any of you who have replied already could possibly also tell me:

how long you went from diagnosis to treatment;

whether you know or not if you had the zap70 marker;

and, when if any did your symptoms begin?

and, the course of your symptoms?

this is "just me" Ted R personally asking. i'll be able to check the thread if you made a reply to my orginal question.

THANKS

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Another "YES" here. Mine was just after I had moved (early 2016), and started seeing a new doctor. They never told me what they found, but I didn't ask, either. Shortly afterward, though, they started me on Imbruvica (I had previously had 6 sessions of Rituxan, with my first doctor).

I had heard (or made-up) horror stories, and was somewhat scared. However, as many others here have said, it was no big deal! Minor discomfort, mostly you feel pressure going in. 4-5 minutes, and they're through. I had no after-effects.

Tedro - In answer to your other questions:

1) My first treatment was about 6 or 7 years after diagnosis. I had started feeling tired, and had some shortness-of-breath episodes. My CBC #'s had gone "wacky" fairly quickly - WBC from 50ish to over 200 in only about 4 months, Hgb down to under 10, & platelets <100.

2) No info on zap70

3) I've been very blessed with relatively few, and mostly minor symptoms. No night sweats or big lymph nodes; mostly just tired, S-O-B; and even then, only when I was nearing (w/in 2-3 months of) the need for another treatment.

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This is really great information.

Of the folks respondents here with CLL type of only mostly high wbc, red doing "ok," no swollen to touch nodes, no symptoms, for 2-12 or more years, of this type of patient(?), it seems, half went ahead and took recommended? treatment -- an ongoing w/breaks regimen, i presume -- even though they didn't and don't have symptoms, and, the other half are still waiting W/W, and perhaps with minor symptoms.

This puzzles me. Makes me "believe"? that I can stay away from the doctor until I have symptoms.

I suppose the only risk is something like a respiratory or sinus infection or any infection... that while you may not of ever had symptoms all of a sudden you can't fight the infection it spreads and maybe it's too late for them to do something about, is that true, that is the *only risk?

--To be quite forthcoming at this point I will say if it wasn't obvious that I don't want to get any of this. : /

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I’m into my third cycle of FCR and not had one yet.

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I was diagnosed 2.5 years ago. Only symptom was swollen nodes in neck. Bloods were normal. Biopsy of node showed CLL. 2 years down the line my white blood count increased rapidly to over 450 and I had deranged liver function. I felt tired but could carry on with most things as I don’t work. I had scans and another node biopsy then started FCR 2 months ago. This has resulted in my white blood count dropping dramatically. First cycle to 22 then next cycle to 11 and my last blood test it was 6. My liver function is normal now. My lymph nodes have flattened but not completely disappeared yet and my consultant says it could be scar tissue. I haven’t had a BMB yet but I expect to have one at some point. I am in UK.

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Wow, I hope you do well. Great report, thank you.

To be sure, 450 means 450k (450,000)?

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Yes. They are the same dependant on which system the consultant uses apparently.

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I had two already ...it is a standard procedure to determine CLL penetration ...

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I don’t think they use it at the beginning anymore. They rely on ct/Pet scans fish blood tests and lymph node biopsy. I think I’ll probably have one at the end of my treatment. I’m in the UK and I think it differs in different country’s.

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what does determining the penetration mean?

and, in light of no symptoms?

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A bone marrow biopsy determines the amount of infiltration of the bone marrow by CLL. In other words, it's a measure of how much bone marrow capacity remains to make blood cells essential for us to stay alive. Blood cells have a finite life - some as short as days. Our bone marrow makes billions daily. As CLL increasingly infiltrates our bone marrow, we see falls in platelets and red blood cells. Platelets falling below 100 or haemglobin falling below 10 are two of the triggers for starting treatment.

You appear to have an opinion that many/most in clinical trials have no symptoms and I don't know how you arrived at that conclusion. With CLL, treatment is delayed until symptoms trigger the need for it: healthunlocked.com/cllsuppo...

Neil

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sorry. i didn't mean conflate my opinion with my simply "internet" observation. i have no idea..it was more of a question, about symptoms and trials. trials which i'm sure are many and varied, which details i onow nothing about and cannot have an opinion.

i have formed a very maleable opinion on non-trial treatment when there are zero symptoms.

i'm hoping the hematologist is able to make things clearer at my appt end of this month.

last July when he said get a BMB, ... i said goodbye.

i also forgot to tie off A few twice asked but never answered questions like what's my ZAP70 marker? do you want to start extracting marrow without checking that we're everything else first? That sounds a bit strange to me. Not something I'm really buying...at this time.

and since I am fully covered by the VA I think sometimes people think what do you care you're not paying for it. You know just let us do all the tests and everything we want. Except they don't. Seems they pushed for treatment...a life-lock.

when I called back after my last appointment to ask his assistant treated me like crap said she would find out the answers. Last week after months I called her on it, she said oh he was out of town.

also this is Southwest Florida. Retirement capital of America. Where people come to die -- meaning The medical around here is mostly for geriatric and palliative. That's just the majority of the work. That makes it that way. --another opinion. : )

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BMB is really not a big deal. It is simply an needle in your pelvis bone to extract a little sample of bone marrow. It could be a little painful depending on who performs the procedure and kind of equipment used but really all you feel is a little pressure - nothing to worry about or be scared about.

BMB samples are important because they are more representative of what is going on with your CLL then the samples taken from peripheral blood. Genetic tests, CLL infiltration, cell phenotype, MRD etc are done on BM samples and are considered more precise.

Also BMB is usually performed when the time comes for treatment. Personally, i would not opt for BMB should there be no reason to get one i.e. slow ALC growth, no other symptoms, watch & wait..

If you are not happy with your doctor you should try to find a CLL expert in your area. You are also close to MD Anderson in Huston, TX which is home to the best CLL specialists in the world.

Usually general hematologists tend to know less about new developments in CLL treatment...my experience...

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Very informative. Because you included that all those genetic markers I've been wondering about are done through BMB.

I'm FINALLY going to be able to talk to the hema doc with good questions that I understand!

THANK YOU

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I don't know. I tend to think there is some medical-treatment-mill aspect going on.

That want to get me loaded-up and locked-in.

I know so many people who never would know whether they have CLL or not, then die of old age. If I wasn't insured I'd never be going to the doctor. And I think it's safe to say that if I went to the ER or somewhere for something else that they drew blood for that they would probably never tell me that I was suspected CLL, and tell me to seek treatment.

AND, when I fail to blindly follow they act like "You're stupid and don't let the door hit you ass... " and more: "good luck waiting when you back in or call us with questions."

THAT'S how I FEEL. as per my experience and info thus far.

--I don't think I need to say that replies are welcome and ... well that's the idea I posted it in an internet forum. -- i'm very grateful for this forum, i assume somebody's paying for it, and information I've received so far, thank you.

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7 years on watch and wait never had one and never will

Jules

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: ) you sound like me!

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if you do more research on CLL on line you’ll find that low platelets and anemia (low hemoglobin) are signs of major bone marrow infiltration and that this is considered a reason to start treatment. there are many serious medical issues where people do not have physical symptoms such as high blood pressure or high cholestorol; the patient may feel fine but that doesnt mean there isnt anything wrong. I had not had any physical symptoms but based on the blood tests both my hemotologist who I trust and a specalist at Dana Farber agreed that “treatment is coming” within the next few months and that it is fine to wait but I will start to feel sympoms. BMB is standard and I agree with the others that it wasnt a big deal but also for me I was skeptical of the blood tests alone as they varied alot and I also had no symptoms, so the BMB that verified that the doctors were in fact correct about the bone martow infiltration helped give me peace of mind that i wasnt being pushed into a treatment that I dont need.

Good luck with everything-

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Thank you, Haesl, and good luck!

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Had 2 - easy. Just felt pressure. On the second one they gave me something to relax me - 5mg of something that started with “L”.

The key is to have a NP do it - they have the time and patience to wait till you are fully numb - doctors may rush it.

They can stop and wait if you feel pain.

They said it would feel like pressure - like having to take a BM. If didn’t but there was some pressure so I was prepared for that and it didn’t stress me

On the second one, it was the nurses first time and she was very stressed out. The nurse instructing her was whispering “put your body weight into it”. I thought it was funny - I mean I could hear them. But I let them know they weren’t hurting me and everything was cool.

Did before and after clinical trial. Other things are available for diagnosis.

Regardless of how long a drive you have, you MUST go see a CLL specialist. There is a difference in life expectancies between those who do and those who don’t.

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Another question:

The drugs to treat are chemo type, right?

If so, doesn't chemo kill everything in there (marrow) good white cells along with the bad?

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there are new treatments available for CLL since 2011. They are targeted treatments which are non-chemo: Ibrutinib, Idelalisib, Venetoclax, Obinutizumab etc. However the golden standard for front line treatment for "fit" patients remains FCR which is chemo. For less "fit" patients there maybe other options. It is not written in stone...the treating doctor should select the optimal approach for an individual. But it pays to be educated so you can have a meaningful discussion instead of just being told...

Chemo treatments can impact healthy cells as well and they also damage DNA of healthy cells which may be detrimental in a long run. Lots can be said about this in more detail but this is just a very brief summary..

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You seem to be fairly early in your researches regarding CLL - you can find an awful lot of information on this forum - maybe have a read of some of the topics and 'pinned' posts that seem relevant to your situation (at the top, to the right).

First a few words from myself - a fellow CLL sufferer, not a doctor or an expert:

1. We're all different, and can have different 'versions' of CLL.

2. The speed at which the CLL progresses can vary enormously, from those who never need treatment to those who need it almost straight away after diagnosis. (In my case, I went from diagnosis to treatment in 6 months or so.)

3. I'm not sure if you suffer from 'needle phobia', but in my case the BMB was pretty painless - no trouble at all. But as I wrote before, many doctors nowadays work just from the blood readings, if I understand right. Treatment becomes necessary (not 'advisable', but necessary) when some of the blood readings move too quickly in the 'wrong' direction, or get too high or too low... there can be a degree of debate about when, exactly, treatment is needed, but beyond a certain point you won't find that sort of disagreement or debate. The criteria describing when to start treatment are 'out there' - you can compare to your own circumstances. As for BMB - you certainly don't have to have this, if you don't want to. Whether and when you have treatment will depend on how quickly the CLL develops.

4. You seem to think you don't have any symptoms - but you do. Fatigue is one of the commonest symptoms of CLL, and also probably one of the earliest to show. In my case, I started to go to sleep on the sofa any time after returning form work at 6pm... this went on for a few months (I thought it was just old age - I was then the same age as you are now, more or less)... I'd also noticed some swollen glands in my neck (not huge, just bigger than normal - no-one else in the family noticed them).

5. Chemo is not the only treatment - there are now more modern drugs for CLL (ibrutinib, venetoclax and a few others). These are sometimes available as a first line therapy; in other cases, they are available if and when the CLL returns following chemo, or if chemo fails. What treatment you are offered depends on which country or state you live in, I think. (As for chemo - the way it works nowadays are that you get given something to 'mark' the cancerous cells, so that when the second material is introduced those cells are killed in preference to healthy ones... if I understand right. It worked for me - rituximab + bendamustine = 5 years' remission and counting).

Good luck... don't be too much on the defensive - the docs have your welfare at heart, I'm pretty sure. (In the UK we can be certain, because with the NHS desperately underfunded, we won't be treated unless it is definitely necessary!)

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I had two.. Pre and post treatment. Uncomfortable but not unbearable.

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I had one last year at Shooting Stars, Wrexham Maelor Hospital when they could not understand why my numbers were up and down. Paul Smith a GP with an interest in haematology performed the procedure and he was brilliant - he put relaxing music on his mobile phone and asked me to lie down - explained all and told me I’d feel a tiny jab - that was it - I didn’t even feel the jab ! Turned out nothing to worry about and I’m still on W&W - diagnosed 2013 at age 64. Don’t worry is my best advice and relax during the procedure!

Regards

Brian

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Thank you ALL!

have Happy Christmas and a Merry New Year!

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Had one right after diagnosis . It hurt not at all, but found out later it was not necessary. Only thing wrong at that time was an ALC of 6.6. The doc also made me have CT scan which was also not necessary. Had I been on this site earlier, I would have questioned his thinking. however my ALC is now 120, so did have CLL

. But that was 4 or 5 years ago.

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It's interesting. I was setup for BMB and also my first colonoscopy.

at the last minute I declined both. --The colonoscopy perhaps I should've had,

The colonoscopy perhaps I should've had,

The more I learn about CLL the more I think my initial uneducated reaction/assessment, without knowing much of anything, was the right one and that was: I'll come back when I have symptoms. Which means perhaps "waiting" but no "watching." That is, no blood draws every x months or weeks. I mean they could do that if they want, but I'm getting the impression and I'll find out soon but mine don't want to do that. That is to say if they tell me to go to BMB and I don't then I get the impression so far that they're not willing to monitor me.

I will find out by the end of this month, But only because I'm going back.

quite interestingly, I think, they scheduled me for an appointment with the doctor without any blood draw -- last one they did was July ; of course you can order one on the spot I suppose -- but I think that says a lot in itself that whole scenario.

meeting just to talk to him and asking my questions. Whereas previously they would do the blood draw and then a few days or a week later I go see the doctor about it.

Is that interesting?

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As I said before - 'fatigue' is a symptom, and you have it (according to yourself). What other 'symptoms' are you waiting for, as a matter of interest?

I had to laugh when I read that you'd declined the BMB and the colonoscopy, 'but maybe I should have had the colonoscopy'. As someone who's had both, I can testify that a colonoscopy last a lot longer and is far more painful than a BMB! The reason for doing them is that CLL sufferers are far more likely to get bowel cancers than the rest of the population, but since you don't seem sure if you have CLL (and refuse the BMB to confirm) there seems no reason to subject yourself to a colonoscopy in the absence of any other symptoms of colon cancer (bleeding, etc.).

But maybe I have misundrestood.

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I had one but years after treatment because my platelet count was low. Not the most pleasant thing but not really painful! A weird sensation of feeling your bones vibrating inside you!!

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