More treatment confusion?!

[lorna222]

Hi CLL'ers,

I am very grateful for this forum. I'm on line a lot but this is the only place I go for CLL info. I saw my Dr. about a week ago and we have the same friendly debate-he wants to begin treatment and I don't. My white count is at 30 thousand, no doubling of the Absolute count, lots of fatigue, no sweats just hot and cold which could be my age (58), good 'ol hormones.

I have been told here that it is the Absolute count that matters but I know there are so many other factors they take into consideration. I do understand my Dr. when he says there is a window for treatment, perhaps do it now as opposed to if and when I am not as stable as I am??? Common sense.

The whole thing seems so vague and confusing - like whack a mole....here this is the number - NO this is the number - on and on you get my point.

I will be getting another opinion early in June from another Dr in another city. I would like to know what is what and where I stand..... I hope that will give me some clarity. BTW, the only time I really think about the CLL is when I have blood work done every 3 months and the debate begins again with my Dr.! We will see! Thanks for listening

Lorna

[DaleFL]

are you seeing a doctor who specializes in CLL?

[lorna222 in reply to DaleFL]

Unfortunately, I do not have access to a CLL specialist in my state or by my insurance.

[Cammie]

In my opinion it’s not just the numbers that should be taken into consideration when deciding on treatment.

Other factors such as quality of life, symptoms such as enlarged nodes, night sweats, fatigue etc should also be taken into account.

Many with high blood numbers continue on watch and wait as ‘B’ symptoms do not affect their everyday life. Treatment decisions should look at the individual patient and weigh up the objectives and best outcomes.

Great to get a second opinion but it really is down to how you feel as well.

I went 18 months after I was advised to have treatment and then only decided to do so because I was visiting my medics every 4 weeks and this meant it affected my quality of life couldn’t plan for holidays etc .

Now in 3rd year of remission.

E etyone is different and numbers are only one thing to factor in for treatments.

Wish8ng you well.

[lorna222 in reply to Cammie]

Yes thanks Cammie, I know it is my choice maybe that's what has me so out of sorts .....and the odds are very good as my Dr. says I am a very good candidate for FCR. Perhaps the fear is taking over! No matter how much I read here. Not to mention the interruption of my life. I will have to give this some thought.

Thanks again

Lorna

[CLLAdvocate]

Hi Lorna:

ALC count/doubling time alone are rarely a trigger for treatment. Also, a white count of 30K is not very high. What are your other numbers (platelets, neutrophils, hemoglobin etc.)? Do you have enlarged lymph nodes? Do you have an enlarged spleen? What reasons has your doctor discussed with you that would justify initiation of treatment?

Teresa

[lorna222 in reply to CLLAdvocate]

Hi Teresa,

My Dr. likes my odds of responding well to FCR, mutated and all the rest of the numbers, His overall disposition is well, you're going to have to have treatment anyway and your numbers are moving that way - so why not just do it.

We have had many good discussions about CLL, trials that have been done, studies etc....My lymph nodes in my neck under the jaw are annoying and sort of gross, not massive like a golf ball but they are there and certainly not normal. He really likes the studies that have shown FCR treatment for someone like me, can buy me 10 years of what they call remission/cure - his words not mine. This is why I am getting a 2nd opinion. I know the first treatment for CLL is very important and you don't get a 2nd chance at having chemo done the first time if you get my drift.

He cannot feel my spleen, so he says it is not enlarged. When I made the appt for a 2nd opinion the nurse sounded rather surprised that I have not had any imaging done for CLL. She asked me twice and sounded very surprised. So, do those with CLL usually have imaging done during our W and W period?

I know my white count is not so high for CLL, its at 30,000 the highest its been, my immunoglobulin numbers are dropping consistently. Thanks for your reply

Lorna

[Hidden in reply to lorna222]

The VERY first thing my primary doctor ordered was a full imaging of my pevlis/abdomen, chest and even head. I can't get an MRI so had to drink the horrible soda for a CAT scan. Still he was all over that.

Scott

[lorna222 in reply to Hidden]

Thanks for that, its good to hear what other Dr.'s are doing, behaving and what tests they order. I have had imaging BUT not ordered my oncologist.

[Hidden in reply to lorna222]

It was my primary doctor who ordered it so it would be ready for my Hematologist appointment. Another thing, you are saying oncologist....do you see a Hematologist? Those are s specialty in oncology for blood cancer...which, is what you have if you have CLL. You definitely should be seeing a Hematologist.

Scott

[AussieNeil Partner Administrator in reply to lorna222]

CLL specialists tend to have enough experience so that imaging is now rarely done. General oncologists and haematologists are more likely to order scans.

This pinned post is worthwhile reading to appreciate the collective wisdom of CLL specialists on when to treat:

healthunlocked.com/cllsuppo...

Neil

[newyork8]

You say you have lots of fatigue but you dont think about CLL that much. Do you not attribute the fatigue to your CLL?

[Hidden]

Lorna,

Obviously I am not a whitecoat (doctor) but WBC at 30K and your Absolute is steady does not seem to me like treatment time. In fact I have asked my doctor for treatment because of the fatigue and she tells me nope. The only time she talked FCR was last winter my WBC jumped from low 20K range to 43K and my Absolute jumped from low 20 range to 32 in a month. But even then it was not a right now type of conversation, more of a "maybe sooner than we expected" type of conversation. She always weighs all kinds of things, blood tests, always asks me about night sweats (none) joint pain (none) and a ton of other things. Since that test my WBC has dropped slightly each month and m Absolute went back to the mid 20's

Her very clear and understood opinion is FCR when I need it, not one second before.

Scott

[lorna222 in reply to Hidden]

Yes! Thank you, that is pretty much how I feel as well having been dealing with this w and w for a long time. I have no problem with W and W. But I do with treatment when it is not called for and/or too early. Appreciate it

Lorna

[yazbe]

Perhaps share iwcll 2017 guidelines with your doc?

emedicine.staging.medscape....

[lorna222 in reply to yazbe]

Thanks so much, I will print that out for his and my info, Also the Dr. I will see for the 2nd opinion.

Lorna

[JustAGuy]

I will be interesting what happens with your second opinion. I hope that one will be with a CLL specialist. Will it?