Just diagnosed

[TXteacher]

I don't what to think. The doctor said my FISH test is negative; no chromosomal damage. He is proposing FCR early treatment to the hospital tumor board based on my age of 55. I may lose my job and insurance soon. So if FCR is an option, I hope I can get it asap.

[Newdawn Administrator]

Hi Teacher and welcome.

There’s so much missing information that it’s difficult to know how to advise and support you at the moment. Has your doctor indicated why immediate treatment is necessary? There are clear guidelines and criteria guiding the need to start treatment which include low platelet counts, falling haemoglobin/RBC (anaemia), lymphocyte level doubling over 6 months (once over 30,000), high level of bulky and intrusive nodes, very enlarged spleen and a host of constitutional symptoms like fever, weight loss, night sweats, recurring infections, debilitating fatigue etc.

I think you need to discuss this with him because it sounds like treatment would have major life implications for you. Be sure your specialist has CLL expertise and if you have doubts, seek out a second opinion. Is he an oncologist or a haematologist? Mention of the ‘tumour board’ made me wonder if it was the former.

There may be compelling reasons for the need for the start of treatment but at the moment you seem unsure what they are. How are you feeling generally? Do you have symptoms? Great to hear your FISH test revealed no additional genetic nasties however, that’s a real positive.

Best wishes,

Newdawn

[TXteacher in reply to Newdawn]

My RBC and platelets look normal. The biggest symptom is debilitating, chronic fatigue. My doctor is a hematological oncologist. He wanted to consult with the tumor board, which he basically said is Jan Kreger at MD Anderson in Houston. He assures me he has better research than what is online because everything I've read advises against early treatment. But he said that's not the case for younger people.

[jerard59]

Do yourself a very big favor get a second opinion from an independent CLL specialist before you start any treatment. Unless you are far progressed or have an aggressive form treatment usually doesn't start until symptoms dictate it. Best of luck on your journey.

[lankisterguy Volunteer]

Hi TXTeacher,

I agree with Newdawn, we have very few details to indicate why your doctor believes you need immediate treatment. There are a few rare cases where that may be appropriate but many previous posts and replies here that show CLL is not normally treated that way.

CLL behaves differently than most other cancers and several major clinical trials have shown that early treatment is potentially more harmful than waiting until symptoms reach a certain level.

Please get a 2nd opinion from a Hematologist that treats CLL exclusively and is familiar with these guidelines:

bloodjournal.org/content/11...

Paragraph 4.1 provides the guidance your doctor should be following.

There is a longer discussion of this in the pinned posts on the top right of your screen:

healthunlocked.com/cllsuppo...

We understand that many people are terrified of being diagnosed with any cancer. They want to get immediate treatment before their cancer gets worse, but that is ineffective and unusual for patients with CLL who want to survive longer.

Len

[cook4650 in reply to lankisterguy]

Agree with all of the above......yes, yes, yes to the 2nd opinion! Don't jump into ANY treatment unless you have overwhelming evidence to support that decision. Aggressive treatment begun too early can sometimes precipitate a poor outcome on the other end. My own FISH tests were positive (meaning "bad") for certain mutations that indicated more aggressive disease. As a result, those more aggressive treatments, FCR, etc. aren't a good choice for me. I've been on Imbruvica for about 2 years now and doing extremely well. Get another opinion (and maybe a 3rd!) from a well-known hematologist that specializes in your particular disease.

[lankisterguy Volunteer]

BTW assuming you are in Texas- here are the CLL experts - MD Anderson Houston is a world class center with leading expert doctors.

Texas

Jan Burger, MD, PhD, MD Anderson Cancer Center, Houston

Robert Collins, Jr, MD, University of Texas Southwestern, Dallas

Alessandra Ferrajoli, MD, MD Anderson Cancer Center, Houston

Elias Jabbour, MD, MD Anderson Cancer Center, Houston

Michael J. Keating, MB, BS, MD Anderson Cancer Center, Houston

Christopher Maisel, MD, Texas Oncology-Baylor Charles A. Sammons Cancer Center, Dallas

Scott A. McKenney, MD, FACP, Texas Oncology, Beaumont

Felipe Samaniego, MD, MD Anderson Cancer Center, Lymphoma Clinic, Houston

Phillip Thompson, MB, BS, MD Anderson Cancer Center, Houston

William Wierda MD, PhD, MD Anderson Cancer Center, Houston

[Hoffy]

cll society web site can give you good information. Early treatment is usually not recommended unless you have a specific need to treat. Especially with FCR. There are studies with early treatment using targeted therapies like ibruvica.

It is important to get a second opinion with me CLL specialist .

30% of people never need treatment for CLL !

Be well.