Diagnosed back in February

[mtaffer]

Hi all,

I was diagnosed with Rai 0 back in February from a random blood test. I actually thought that I might have prostate cancer, so my primary care decided to do a ton of blood-work. Now I am about to go to my 5th monthly blood test on the 15th of this month. Initially it seemed that all they were looking at was my wbc count which started in the 60's and is now nearing 80. The nurse will call the hematologist in the room if it enters another 10 digits. As someone that is not comfortable with having blood taken it can really get to me...especially if they take a lot of vials. Usually I break out in a sweat and feel faint...sometimes I get nauseated too. I can only imagine what would happen if I had to have more intense treatment. So, yeah people around me kind of treat this disease like it's nothing, but I always get anxious before going to have more work done. The time before last, the nurse said she had to go get the doctor, apparently my lymphocyte count had gone past normal to 57%. Then I was told that they needed to monitor that closely. Here I was being relieve that my wbc was only advancing by 2 each time and now I have this to be concerned about. Also, I have noticed that things are not healing as well as they used to. Sometimes my throat will hurt on either side for a few days when swallowing. It subsides, but I guess this is the lymph nodes swelling. I almost went to an ENT with it. Sorry this is dragging on, I'll get to the point.

My doctor told me that they won't even start to consider treatment until my wbc reaches 300, but apparently they are concerned about lymphocyte %. How does this compare to what you guys are hearing from your docs?

[Newdawn Administrator]

Hi mtaffer,

I think they're going to put you through a lot of unnecessary psychological and physical strain if the monthly blood tests continue with over reactions every time your WBC goes up a couple of points! Monthly monitoring is very frequent and a preoccupation with your WBC somewhat unusual. My haematologist sees me every 4 months but concerns himself primarily with my ALC (absolute lymphocyte count), not percentages and platelet and RBC levels plus my immunoglobulins. He's also more interested in how I'm doing and feeling than numbers which would include discussion on any enlarged nodes/spleen causing discomfort.

Is your haematologist experienced in dealing with CLL because there seems to be an element of over-cautiousness based purely on the numbers and if he's waiting till your WBC goes up to 300 but seeing you every month for blood tests, this will take its toll on you and your veins!

I think you need to challenge the need for such regular monitoring and ask for the rationale behind it. Explain how distressing you find the blood draw. Does he examine you or is it merely the nurse reporting back on numbers?

I'd have to say this isn't the standard consult situation and it's not hard to see why you're finding it punishing. Your absolute lymphocyte count is one of the key indicators of disease progression but doctors rarely get excited until they reach 30 (30,000) and double in 6 months.

Hope you can find a way to ease the frequency of consult and concentrate on the issues more important to you. A second opinion from a CLL specialist certainly sounds desirable in your case.

Regards,

Newdawn

[Ballyhoo77]

mtaffter, I would take Newdawns,advice and get a cll specialist if you can. Hopefully they ease your anxiety.Stage 0 is a good place. Wishing the best for you.

[Jillinill]

Mtaffer, my first hematologist at the hospital wanted to start treatment right away before they even got the FISH results when I was diagnosed with 155 WBC. Another hematologist on his team came in 4 days later and said that he normally waits until WBC hits 300, just as yours said. When I found my local hematologist, he also wanted to start treatment right away, but I requested that we follow the guidelines and wait for the time when ALC lymphocyte count doubles in 6 months. I went from ALC 137 to 221 in 6 mos, but my hemoglobin fell to 10, platelets dropped to 109, and my low body weight started to drop so we started ibrutinib treatment.

On blood draws, I can understand the anxiety. When I was in the hospital, they drew blood from one vein twice a day. Prior to treatment I was monthly blood draws on my request due to my own anxiety. Now I get blood drawn every 2 weeks as I'm possibly becoming resistant to ibrutinib. Every time I go in, I tell the phlebotomist tech that my veins are great and that it isn't going to hurt and I look the other way. It usually works. Some favorite techs are better than others. The blood draw yesterday was less than a mosquito bite!

I would take above advice and find a CLL specialist if you can. Hope your anxiety subsides.

[Quarry]

As others say, get a haematologist who specialises in CCL. Sounds like they are monitoring you way too much....CLL usually progresses very slowly. They are possibly also not looking at the right counts. Even within haematology, CLL is a specialism.

On blood draws....there can't be many that enjoy them! As Jillinill says, look the other way, breath deep and think of something that is great to you! Also ensure you really clench your hand hard(not only helps bring the vein up, but also great physiologically!). I don't know if my phlebotomist is very good, but I rarely feel a thing and it is all over in well, well under 10 seconds (including replacing the collection bit and redrawing)!

[yazbe]

Hi, there, mtaffer ~ wow, what you're describing sounds really unusual. Agree with the other folks that you need to see a CLL specialist! Judging by your spelling, I'm guessing you're in the US (me, too). When I was diagnosed in March of this year, I chose my CLL doc from the list provided by the CLL Society. Here's a link to that list ~ also, tons of reliable information at their site ~ I learned a lot about CLL there. Best wishes to you! cllsociety.org/toolbox/cll-...

[newyork8]

i dont beliebe ANY WBC count would trigger treatment in and by itself. Thus, get a second opinion for sure from someone who knows CLL well.

[mtaffer]

Thanks for all of the replies! I am meeting with the hematologist again in September to discuss where to go from here. I guess they were monitoring me over a 6 month period to see how it was advancing? After that consultation I will decide what to do. Also, I may have forgotten to mention that I am 13q deletion with genetic markers. I know that makes a difference.

[mtaffer]

Ok, I should have looked at the other documents before saying that...thanks.