CLL Support Association
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Would appreciate your input!

Would appreciate your input!

Hi all,

I saw my Dr. 8 weeks ago and he was pretty sure I was getting near treatment. I have been W & W since 2011, I'm 57. He was concerned because the Absolute count went from 12,000 to 22,400 in 4 1/2 months. I just received my new results today: Absolute count is down to 18,000 White count is hovering around 24,000. This time around he ran the Immunoglobulin G, M and A.........G is at 510 and M is at 26, A is at 27 - normal range. - So G and M are both are low and I think...(not sure) this means the CLL is on the move and progressing as my system is having a hard time fighting infection. I will see my Dr on Monday, today is Tuesday Jan 23rd.....I have decided to get a 2nd opinion now that I have the newest numbers....SO with all of that being said, does the Absolute Count STILL have to be around 30,000 BEFORE treatment? Is that the standard as I understand it? I don't want to be rushed into treatment taking all into consideration, hence the 2nd opinion. I'd really like to hear what you think. Thank you in advance, and thank all of you for posting about FCR since that is what this Dr. wants to go with.

Lorna

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Hi Lorna,

Treatment with CLL is not determined by the absolute lymphocyte count (ALC) climbing above any level, rather one of the triggers for starting treatment is when your ALC doubles in under 6 months after it has first climbed above 30(thousand).

This pinned post should answer your questions regarding when to start treatment - and if not, ask away here :) .

healthunlocked.com/cllsuppo...

If you are having serious enough infections, your specialist may recommend you start having IgG infusions - typically IVIG in a hospital or subcutaneous IgG at home. How low your IgG needs to fall depends on which country you live in. In Australia you need to have a count of under 400.

For the moment, you've escaped the need for treatment as your ALC has dropped back. If treatment discussions resurface, familiarise yourself with what international CLL specialists agree on and if you don't seem to fit any of those triggers for starting treatment, look for a second, independent opinion.

Neil

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Hi Neil, Thanks so much for the info and the link. Just when I feel that I'm well read on CLL there is yet more to learn! I will seek a CLL specialist as suggested. Interesting about the IgG infusions I will ask about that too. I have been getting sick in the last two months. Had bronchitis and before that a sore throat. I am in the US by the way. Thanks again!

Lorna

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I would not begin therapy based on white count alone. Mine is 58K. But my hemaglobin and platelets are normal. I have moderate fatigue but no other symptoms. Since most therapy results in resistance over time I would wait as long as possible before beginning. Since this is a rapidly changing field, consulting with a CLL expert is critical.

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Thank you for your reply, I will do that!

Best,

Lorna

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I agree with the other answers. But it really is as simple as this...is your doctor a CLL specialist? If the answer is no, find one for another opinion. Doctors really don’t look at doubling time until you are over 30k or are experiencing severe B symptoms. If you haven’t had mutation test or FISH testing done, that will help guide treatment. I love my local hematologist, but the best advice I ever got was to get a SPECIALIST on board.

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Yes, will do. and thank you for the info on the 30k. Each time I meet with this Dr. he is a bit pushy about starting treatment and it seems to be a bit opposite from what I read here and elsewhere. I will seek a specialist and a 2nd opinion!

Thank you

Lorna

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I love your golden retriever. I have previously had two, and they are among the most wonderful canines on earth. Our Golden used to beat me, and my then wife, to the pool every morning. We could not get them out of the water. Talk about great swimmers, none better than a Golden. Not only that but truly great companions. When they passed an extremely sad and traumatic day for us.

Nick

Miami Beach

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Hi Nick, Yes love the Goldens, they are so special. I do love all dogs just about but they are really different, we've had a few and love them:)

Lorna

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Hi Lorna,

I don’t believe that alc alone is a reason for treatment. Mine had climbed to 179,000 before we had the discussion, that was also when my platelets dropped below 100 and my spleen and lymph nodes were enlarged. Neil’s advice is great. Best wishes, keep us posted.

Beth

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Thank you Beth! I'm so grateful for this forum and all the facts, feedback and continuing education. It makes me feel armed with facts when I see any Doctor about CLL and for me, that is a good thing - information is power. Since I have not had such low IgG levels I will read on infusions as Neil was talking about and search for a CLL specialist. I am in New Mexico (USA) and I am pretty sure I'll have to go to Albuquerque about 3 hours away for a specialist, worth it though. Thanks again,

Lorna

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Here is a list of patient recommnded CLL doctors... unfortunately there is no clear definition of a CLL specialist, but they tend to be equally involved in the clinic and in research... Hemaetologist are usually better choices than oncologists, but patient doctor 'fit' is paramount in my view...

docs.google.com/viewer?a=v&...

~chris

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Thanks Chris, I agree. I like the Dr. I have now, he spends a good amount of time with me and answers all my questions minus an attitude:) Thank you for the list as well.

Lorna

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