CLL options

[oldguy68]

I am a male; 69; have CLL; had bone marrow biopsy; live in Katy, TX; my white count is 69; as of last week; was 32 in July; so has doubled in 6 months; (was noticed at 14

about 3 years ago) had gone up in small amounts until this last reading; was 40 in September; now 69; Lucaran was prescribed; costly stuff; $2,400 "for one treatment"

changed oncologists; new one said don't take it; too high of a dose for count of 40;

fatigue I thought was because I quit riding a bike; but now find out it can be from CLL;

next visit is 3 months; then maybe start treatment with a newer type of drug; forgot the name; I'm old!! Any advice from anyone in Texas would be appreciated.

[baq724]

If you’re in Texas, find a specialist at MD Anderson. CLL specialists only deal with CLL and are up to date with all of the newest treatments. I would imagine they will want to do testing and determine your FISH result and IVGH mutation status. (If you have not already done this). CLL treatments are changing for the better. If you haven’t got a specialist, you need one!

[MsLockYourPosts Passed Volunteer in reply to baq724]

Your bone marrow biopsy may include a flow cytometry and a Fish test. The Flow cytometry is used to confirm a diagnosis of CLL. The Fish is important because it can indicate which treatments are most likely to work for you. You absolutely need a hematologist who is very familiar with CLL. In the US leukeran is rarely used any more as a mono therapy.

If you post your FISH results, as well as your absolute lymphocyte count (ALC, not percent), hemoglobin (HGB), and platelets people can give you a better idea about what you are dealing with. Also, are you having other symptoms - swollen nodes, night sweats, losing weight? It could be that you don't need treatment yet. All of these factors should be considered when deciding about treatment.

You might want to lock your post (indicate community only at the bottom rather than the default of everyone for your privacy and that of anyone who responds. Click on the v, then edit, scroll to the bottom of the post and change to community only, or if you start a new post you can lock your post when posting.

[Mauisusan in reply to MsLockYourPosts]

Also what stage have you been tested for? I went to Mexico for alternative treatment and I am on a strict diet and tons of supplements. Coffee enemas and wheatgrass! Juicing and high protein smoothies! My numbers go up and down but I am great! Do alternatives before drugs!

[Cll4me2 in reply to baq724]

I’ll second baq724’s recommendation, especially with MD Anderson just a few minutes away from Katy!

[dreckman]

Absolutely agree with baq724. MDA has among the best CLL specialists in the world. I live 300 miles away from Houston, north of Ft Worth, and still drive to Houston for my exams and treatments. They are the best. Leukeran!?!? That drug must be a hundred years old. There are much, much better options for you.

[oldguy68]

I've heard nothing good about Leukeran; she prescribed it after bone marrow biopsy; I have my "fish" and other figures that I don't understand the numbers; the only number they kept referring to was my white count, which was 40 at that time. 69 last week. I am a total novice at figuring out what is best. I actually filled that prescription (which took some time to do as pharmacy never heard of it; found out it is a stage 4 drug; pharmacies don't carry it; it has to have insurance approval before they will order it; $2400.00) Back at "wait and see"; with new oncologist/hematologist; other computer sites are big on wait and see; avoid treatment as long as possible.

[Hidden]

I am in Austin. Go to M.D. Anderson. They have several clinical trials and will take care of you well. Living as close as you do you should call today and get set up.

[oldguy68 in reply to Hidden]

I had already spoken to a lady about that clinical trial; she took info; told me call someone else; which I did, got his voicemail; never heard back; I assumed it was because my numbers were so low at the time that I didn't qualify.

[pkpayne]

Hi oldguy, I'm in Texas - Pearland to be exact so we are almost neighbors. My first and only advice is to get yourself to M.D. Anderson and see a CLL specialist. From what I understand CLL is fairly rare and most hematologist or oncologist just don't see enough of it to know all the latest and greatest treatments - of which there are many. You need to be tested for lots of things to know which one would be best for you. We are lucky to be located where we have some of the best treatments available. Best of luck.

[oldguy68 in reply to pkpayne]

Yes we are not that far apart; you are in BBQ heaven; Killens; have been there several times; have found others since then closer by; that is a long way to go for lunch. Had talked to MD Anderson about a clinical trial; way back when I was first diagnosed; (about 3 years ago) for whatever reason they did not follow up with me.; as I called again and got voice mail again.

[pkpayne in reply to oldguy68]

I emailed my doctor (Dr. Wierda) and told him a little about myself - age, female, etc. and asked if he was taking new patients and he said yes and that someone would be contacting me and if they didn't to let him know. Someone did contact me shortly after that and that's who I've been seeing. I think you should try again. Definitely, definitely go to a CLL specialist.

[gp7591]

Dear oldguy68- The best move you can make for your health is to see a CLL specialist- someone who sees CLL patients on a weekly basis, does CLL research, etc.- not just an oncologist/hematologist. The doctor you're now seeing may be sharp, but may not be well versed on all the symptoms and treatment options for CLL. The MD Anderson Center in Houston is world renowned for cancer research and treatment programs, including ones directed for CLL. One of their doctors- Dr. Michael Keating- is very well respected and highly experienced in evaluating and treating CLL patients. I know a guy who lives in Louisiana who drives a few hours just to see him- and this guy is very astute, so I know he's made a good choice. Go see a CLL specialist soon- and ask a lot of questions. This will be the most beneficial thing you can do and it will pay off in better health down the road... Wishing you the best, G

[MsLockYourPosts Passed Volunteer]

Check out cllsociety.org - everything from the basics to the latest research and a list of links to other reliable, CLL specific resources. LLS is a good one - good printed information and phone counselors. You can get a good idea about what your tests tell you when you get copies of them.

[kupers]

I agree with the others that have posted. You need to find a CLL specialist at MD Anderson. You are lucky to be in the Houston area. Just recently diagnosed, I flew from the Chicago area to see Dr. Keating a couple of weeks ago and it was worth every penny spent. He is the best!

[AZ_CLL_Patient]

God Bless! I'm a fellow CLL patient. Thank you for your post and all replies.

[Hoffy]

CLL Society site can help.

Be well,

Hoffy

[dreckman]

I was just wondering if you'd heard back from MDA yet? If not, please try again. They've been under pressure with weather closures and such but a are generally very responsive. If nothing else, go to the MDA home page and fill out the "Contact Us" form with the info they ask for. You'll almost always get a response within a day. Please go to MDA. You are so close. You'll never regret it.

[120940]

Hi, I went to MD Anderson 7 times and they never treated me . All they did was repeat the other tests that two other oncologists had done. They would not use those tests. It just cost me lots of money to pay for duplicate tests. I went to a small town and asked for help with a clinical trial and the first infusion brought the lymphocytes below normal. It’s been great because I have no side effects from the infusion. It is not chemo. It’s a monoclonal antibody that is infused and steroids and antihistamines.

My insurance pays the doctor but the tests like cat scans and mri the study and meds are paid by the study. I think you should wait for the numbers to be higher what about the lymp nodes are they pain ful, big? I waited for 2 years before treatment. We were told that anyone older then 65 should not get chemo for cll/sll. Good luck.

[oldguy68 in reply to 120940]

Thanks for the info; I'm assuming you were not on a "trial" at MD? What insurance do you have that you paid for tests? Are you over 65? I am 69. I was not going to try MD anymore; had tried for trial twice before; never heard back from them. also that is a drive I have no interest in from where I live; with traffic, construction, bla, bla, bla. Have been there once for another reason. Recent test shows absolute lymphocytes 49,000; normal high is 3900; WBC 64.5. Just about all other numbers are in the "normal" range. Oncologist is still on "wait and see" come back in 3 months. This is the one I changed to when first one said go on Leukeran; (Chemo) I wanted another opinion and switched; new one said that drug plus the high dose; she did not understand why it was prescribed; said do not take; which I had not started; so it sits in the refrigerator. This site can give you a headache on what one might want to listen to. My WBC started out at 14; about 3 years ago; now 64.5; which as I understand from so much reading; and my Oncologist, still is not that bad. I see several others are over 200. That, of course is just one of the "red flags"

[120940]

I am 79 and they never put me on a trial at Anderson. They promised but every time I went it was just tests and on the last trip they called while I was driving to say I was going to get two drugs infused at $13500.00 , yes and perhaps a drug company could reduce to $6,500.00 per month. I wanted to turn around but this was a 6 hour drive one way. We had reservations to stay at a motel near by. We went to see the oncologist the top doctor at Anderson for cll but declined treatment. I went back home in the Rio grande Valley and moved to Central Texas to see this oncologist. I now have better insurance with Medicare and Mutual of Omaha Supplement G. What Medicare doesn’t pay they pay. I also have a drug insurance part d with Medicare.The trial study pays for the drug and my oncologist said they will continue to see me for as long as I want the medicine. You have to do a lot of research and ask for all your test results and make a notebook of your results. This helped my doctor for comparison and they know when you did those tests. Good luck!

[CLLmoxie]

I live in Dallas and was recently diagnosed with CLL. I filled out a form online for an appointment at MD Anderson and was called back the next day by an appointment scheduler, a clinical information taker, and an insurance person. All VERY nice and helpful. I still think that is the best place to go ... even with Texas Oncology and UT Southwestern medical school here. There are some amazing new treatment protocols depending on the combination of your genetic markers and counts. Fight for yourself!