I had check up with oncologist this week. Last January she told me that chemo would be sooner than later. I was able to avoid it all year. I have had CLL for 10 years. My WBC reached 193k. Last January I was at 150. Seems to be accelerating over the past 2 years. I have some swollen nodes. No other symptoms. Have lots of energy. I planned on going for second opinion at some point. Dr. suggested I go for second opinion before I could get the words out. That was a relief. She suggested I go to Moffitt Center in Tampa, FL which is about 3 hrs. from me. I asked her why I wasn't going to try ibrutinib etc. She said I didn't have the mutation. Not sure what that meant. Can anyone explain that? Will meet with her in January and then get information to make appt at the Center. She said they will repeat some tests, blood, possible Petscan and then might take bone marrow sample (had that done with no issues 10 years ago for diagnosis). She said the chemo would be 6 months...the usual effects like losing hair. Feeling blessed I have not needed treatment for so long but now feeling anxious. I will have a lot of questions answered at the Center but also wondered if anyone went thru chemo can tell me if we get rid of CLL by going thru it. Can it return after chemo? Have you ever heard of fractional chemo- gentler type of chemo?
Chemo Might Be Next: I had check up with... - CLL Support
Chemo Might Be Next
Hi GMa,
It’s always a pivotal moment when we are told treatment is looming but in your case I’m glad you’re seeking a second opinion. A high WBC is the least persuasive reason for requiring treatment in the absence of an ALC (absolute lymphocyte count) that has doubled over 6 months (once over 30k). Skilled haematologists are more centred on plummeting platelet levels, low haemoglobin with anaemia, bulky intrusive nodes and constitutional symptoms which you don’t seem to have. So please take advantage of a skilled opinion from a CLL specialist.
It sounds like your oncologist is using the absence of a 17p deletion to rule out non chemo treatment but in the States, it isn’t the major consideration. People with a 17p deletion are not felt to achieve the same success with chemo so Ibrutinib is offered but there’s more compelling reasons to look at BTK inhibitors like Ibrutinib if they are available to you as a first line treatment.
FCR can achieve tremendous results in terms of enduring remission for the right patients and it doesn’t usually involve hair loss. There are gentler forms of chemo for older patients with co-morbidities. The aim is to achieve a MRD (minimal residual disease) position and many (but not all), have remissions lasting a decade and more with chemo.
Best wishes to you but you really do need more dedicated CLL advice.
Newdawn
Thanx Newdawn. I know she looked at my collective numbers. I tend to just focus on WBC as a whole. My HGB dropped from 12 to 9.9. She was concerned about that. Platelets were 115....low but ok. Lymph % 93.4. Neut % 1.2 low. I will definitely ask a lot of questions when I go for second opinion.
Forget percentages, follow the absolute absolute lymphocyte count [ALC] and absolute neutrophil count [ANC]..usually designated with the # sign...
~chris
Chris- my neutro # is 2.2 WBC is 194 which I guess is my ALC count?
There are quite a few different white blood cell types that when totaled give you your WBC. So your ALC is at least 2.2 below your WBC (by subtracting your neutrophil count). Your ALC is generally somewhere between 2 and 10 below your WBC, but it depends on how the individual white blood cell counts are affected by infections, allergies and even treatment. The difference isn't that important when we have a high ALC, but for those of us with a WBC in the 30's to 40's, it makes a difference, because CLL specialists don't look at the lymphocyte doubling time (one trigger for starting treatment) until the lymphocyte count (not total WBC count) climbs above 30.
Neil
Hi GMa, I cant answer your questions as we are all different.I was diagnosed in November 2015, Treated with four cycles of Bendamustine & Rituximab, Starting October 2016.. I have catalogued my journey,good times & bad please feel free to browse & hope it is of some assistance. Regards.
GMa27
I am m66 dx one yr ago, stage0.
I am encouraged to note that u had
10yr wnw and had no issue of fatigue/low body energy. I am doing whatever I can with respect to diet and exercise to get similar wnw!! How old r u and did u do anything special? Any advise can be very benefecial for me and many others.
My best wishes from India
vinnet
Hi Vinnet
I was 52 when diagnosed. By the end of this year, I will be 63 and so far still stage 0. Things are starting to move towards treatment - seeking second opinion Feb/March.
Since my father had CLL and never needed any treatment... I just went along with my life after the shock of finding out I had CLL and didn't do anything special. I started gentle yoga about 4 years ago and walked 20 min a few days a week. I always was a high energy person and so grateful that I still am. Great metabolism and hardly had weight issues, being able to eat mostly anything I wanted my whole life.
I have slowed down a bit and try to spread out my activities. Not sure if that is due to my age and a natural progression or the CLL. I listen to my body and if I feel good, I go with it, but if I feel off or tired, I rest. I was just diagnosed with gastroparesis in June which has forced me to totally change my diet. That was a huge adjustment and there is no cure. Low fat low fiber is the key to staying symptom free. I am sure my old eating habits were probably not helping my general whole being.
I have gone to acupuncture for the past 15 years. That has helped me boost my immune system against germs. I originally went to acupuncture for other reasons.
Continue to exercise whether it's walking, biking, going to a gym, swimming, etc., we benefit from it. Good luck on your journey.
Hi GMa27,
Thank you for sharing.
I was diagnosed CLL stage zero two months ago and I am 52. I hope I could benchmark your experience and expect the same outcome of yours.
By the way, I am Chinese.
Please do keep in touch.
Frank
Hi GMa27, you stated you are about 3 hours away from Moffit in Tampa. That is an excellent choice (Dr. Pinilla), but if you are closer to Jacksonville, Mayo Clinic is excellent also. I see Dr. Asher Chanan-Kahn there. Would definitely recommend conferring with a specialist before agreeing to chemo.
Jax is about 4.5 hrs. My oncologist mentioned Moffitt. When I see her for follow up in January will bring up both options. Was hoping she would suggest Hollywood which is an hour away. Moffitt joined another facility but she said the Center in Tampa had everything I would need there. Thanx for recommendations! Have you had any treatments yet?
I use Dr Alvaro Alencar at University of Miami Comprehensive Cancer Center.
He’s phenomenal.
Jeff
GMa
Thanks for the swift response.
CLL seems to be a mysterious character which refuses to reveal its secrets. Neil/Chris have been indicating that CLL patients feel fatigued. I feel low body energy. But u are spared from this malaise. Also, CLL progression follows no rule and does not depend upon diet etc.
I do yoga and pranayama, as well as meditation. I pray and hope that I will be blessed with 10yr or more wnw.
best wishes for your second opinion. I see no reason for thinking treatment with your great body condition.
vinnet
GMa - you might want to check to see which trials Dr. Channan Khan and Dr. Pinella might have to offer. If there is a good trial available that can be a deal breaker as far as where to go. NIH would be another place to consider if they have a good trial for you, as there is no cost to patients, they pay your travel expenses, and give a stipend for lodging. LLS.org will help with trial searches.
Pkenn where/what is NIH? I am confused as to what my oncologist said when I asked her about oral meds as opposed to chemo. She said it had to be chemo since I didn't have a mutation? I didn't ask what that meant. Was overwhelmed at that point. Also it seems from the posts, that people take the meds/trials, assuming they are pill form for years and years and have to deal with side effects while chemo is approximately 6 months and I am done. Can anyone explain the pros/cons? Are either a cure? Do any of these get rid of the CLL?
CLL is a chronic blood cancer. It can be treated and usually controlled, but can't be cured. The traditional treatment for years has been FCR, a combination of chemotherapy and a monoclonal antibody. BR, also chemo with rituxan, is now often used. These are usually 6 month treatments and for some people they work very well. One downside is the potential for damage to the bone marrow.
It has been found that those with certain deletions on the FISH test and those who are unmutated don't tend to get long remissions on these combinations. The newer, non chemo, drugs have helped many of these patients. A plus is that there is not the same risk of marrow damage. As with the chemo based treatments, some experience difficult side effects. When reading on line you have to remember that the people most likely to post are often those who are having problems and are looking for answers. Many are doing very well on these drugs. For now the norm for most of these is daily pills for the rest of your life or until the drug ceases to be effective. There are other options should that happen. Researchers are also looking at whether one can go off these drugs at some point and resume taking them, if necessary, down the road.
There are some very promising trials combining these treatments with each other or with chemo - looking for the cure, but also looking at whether they can find a shorter course of treatment.
I don't understand your doctor's statement that you have to have chemo because " you don't have the mutation." We are all mutated or unmutated. Mutated is better. The FISH test looks at deletions. Those with certain deletions are known to not do as well as others if chemo is used. In some countries that is a deciding factor as far as which treatments are available to you, but that is not true in the US. There are also trial options here for the next generations of the newer drugs and/or combinations of drugs. NIH (National Health Institute) is a research center in Washington DC which is running some of these trials. Different research centers can offer different options, so it's worth looking around and asking questions. There are some good threads on Cllforum.com describing the experiences of people on some of these trials.
I would have your doctor send you all of your medical records - labs, scans, doctors' notes - the HIPAA Law gives you the right to everything. You won't understand everything, but you will have the basic information needed to start asking more questions, especially your mutational status, if that test was done, and your FISH results. If you haven't had a FISH test done recently it needs to be redone, as the deletions can change. PET scans are not usually done for CLL. CT scans are used to look at nodes if they are of concern.
LLS.org has good information and great phone counselors. CLLsociety.org has a wealth of information. Start with the basics, then begin to focus on the specifics that apply more to your case.
I hope that this helps!
Pat
Hi Pat! Thank you so much! Will be getting more information during my second opinion at a cancer center. With your thorough explanation, I can be better prepared to ask proper questions! My oncologist gave me impression that when it was time for chemo, it would rid me of CLL. I could have read into it too! Her office also has a chemo section. At first I thought it was suggested due to the fact they have this section, but when she suggested I go for second opinion, I felt better about her intentions. I have always found her to be compationate and knowledgeable. It scares me to think I may have to be on pills the rest of my life with what I hear about side effects. Chemo I guess can be awful too for some but then it's over. Or is it?
Some have ongoing issues caused by chemo. Some on ibrutinib have side effects initially which then disappear. No easy answers, but the advances being made treatment wise are exciting!
GMa27: I asked and you responded to my question about long-term care. Are you willing to tell me the name of your insurance company/carrier? If you are prefer to do this privately I understand and we can make arrangements for you to do that.
Separately, you talked about your doctor's comment about 'not having the mutation.' The advice given by Pvenn in this stream is absolutely correct, sensible, and should be read very carefully. But, two points about it.... I interpret your doctor to mean that you are unmutated. This is, as Pvenn says, less favorable than being mutated. There are implications about which you can read @ the lymphoma.org website regarding the unmutated status. This status does mean that you are more likely to benefit from one-pill-at-day than from initial chemo ~ because it appears that the positive effects from chemo have a likelihood of being short-lived. There are, far fewer long-term negative effects from the pill option than from chemo ~ which can have a ruinous effect upon bone marrow... and it is the bone marrow that creates your future immunity so this is something to nurture if you can. Do not despair but rather think of the pill-option as the best of both worlds particularly for unmutated individuals.
I really shouldn't say the next comment, but I will. Unless your current doctor is a CLL specialist you really need to make a move to a medical practitioner whose sole or at least primary interest is in non-solid cancers, specifically CLL and its close relatives. This is such a fast-moving field with remarkable advances on an almost monthly basis that three things are relevant to your circumstances: (1) the longer you wait to begin treatment (and as Pvenn says.... you don't appear to have the dire symptoms yet that signal you have an immediate need) then the greater the chance that a new treatment will be identified that will be <optimal for you>; (2) only specialists have the time and incentive to keep updated on advances; (3) the Pvenn comment that you must get updated FISH results is crucial and timely for that array helps guide your treatment plan. At any of the specialist centers mentioned in the replies here, this would be routine ~ but it is not so for many 'small practice' nonspecialists.
Will share LTC company privately. My oncologist is a hematologist. I am glad she suggested second opinion, as I was going to tell her that was my plan.
I never got into any of the specific details of my CLL as much as I see others do. My dad had CLL for 25 years and was never treated. I just did the W&W till now. Getting better informed and hoping for the best. My oncologist said I couldn't do pills...I will find out why and ask more in Jan.
Is there a way to private message on this site? Or we can exchange e mail addresses. Thank you!
This site supports private messages so members aren't placed at risk by sharing contact details: support.healthunlocked.com/...
Update....still feeling great. Going for my second opinion March 15th. Hoping I will remain on W&W.
Alice
CLL Specialist 
Leg and arm cramps
CLL; when is treatment?
CLL with with WBC over 100,000
