Going on Tuesday for my second opinion @Moffitt Center in Tampa. I was there last month for initial consultation. They will go over blood work/findings and recommend which treatment. I have had CLL for over 11 years. Never staged. I have list of questions if they recommend FCR chemo and list if it's ibrutinib ( both were mentioned at last months consultation) or trial. Would appreciate any input. Maybe you will have something I didn't think of.
Also when treatment was time for you to start, were you ever given a choice? Would anyone's deletions etc benefit from either or is it always one that is recommended?
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GMa27
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Hello GMA27. We see Dr. Chavez there. Stage 0 but bad mutations. No treatment recommendations yet. But since we are 17p- TM53. Chemo is not an option for us (hubby actually).
Guess they did the FISH since they had you come back in a month. Usually blood work is done before the exam.
I agree with MsLockYourPosts. There are a number of options. I like our doctor at Moffit but I do have difficulty understanding his English when it comes to the drugs. But even regular English speakers could be hard to understand. My husband is stable at age 70. We have turned down one clinical trial cause he still works full time and plays golf 2 times a week, yoga once.
Dr. P does have a heavy accent. I did have him repeat a few words I didn't understand. But for the most part, I understood him. I went to him for second opinion. I plan to have my treatments thru my local oncologist. Not sure I could do a trial if offered. Don't know how often a person has appts during a trial. Can't travel round trip in one day.
Oh I understand not being able to do the round trip. And the trial might have some side effects that would make driving hard too. I know this sounds strange but it is a small town. If we have too, we will hire an off duty fireman to do the driving. Some went to school with my son.
You are so young compared to my hubby. Sure he would like to live longer but he also knows he won’t live forever. Ok, as I wrote that I realized that his family tends to be in denial about cancer. His sister has stage 4 lung.
Yes! I have been ill (though don’t look it) since I was 37. 68 now. I do not remember what well feels like. But I am very, very lucky to do what I can.
I could have misunderstood but I thought I heard that even with the bad deletions 25% don’t get symptoms. I am hoping for that for you and us! And others too!
You don't have to make an immediate decision re: treatment. Use this appointment to find out what the tests show and to discuss your treatment options (pros and cons of each) based on that information, if treatment is on the table. Take a recording device (phone app) so you can listen to what was said more than once outside the stress of the appointment.
You can always go elsewhere for a second opinion once you know what you are dealing with. Dr. Pinella is the big name CLL doctor at Moffit. Be sure you are dealing with someone who focuses on CLL, not just lymphomas.
Dr. Asher Channan Kahn at the Mayo in Jacksonville is also well known in CLL circles and there are other terrific options on the east coast if you are able to travel.
Another option would be to look at what NIH (the National Institute of Health in Washington, DC) has to offer. They might have a good trial. All appointments, treatments, etc. are free, they pay for your travel, and give a stipend for housing and food while you are there. I know several people who are in their Natural History Study or in trials there and they love the care they are getting.
Great idea to record session. Dr. Pinella is my second opinion. My local oncologist sent me to Moffitt. Dr.P said he would give me his recommendation on Tuesday. FISH and other test results took a few weeks. He mentioned in a month or so, I should start treatment. I saw him mid March....I am thinking he meant in May. Hoping my HGB is stable and didn't drop more. I am hoping when he reviews the latest results, I can delay treatment a bit more.
NIH is for trials. If your CLL is not active you can enroll in the Natural History Study for CLL. I know several people trucking along in that study - mostly a medically boring group - a good thing. Others have gotten fantastic care in their various studies.
The go-to approach in Michigan is to use ibrutinib if a patient is 70+ years old. Chemo is deemed too harsh to tolerate for most people that age, depending on other health issues.
What are your symptoms that you already know treatment must be started?
I am 63 and act like 40. Feel fantastic however nodes grew and anemic. CLL expert will review my FISH tomorrow. I would love to hear I can wait another 6 months. My oncologist wanted to start treatment last year but I didn't think my symptoms moved in that direction yet. Was grateful for the past year. Then in January oncologist suggested I go for second opinion. Moffitt said I will need treatment and agreed with my local oncologist.
First diagnosis had me with stage 2 lymphoma, second diagnosis was CLL stage 0-1. Did not start treatment until 9 years later, doctor told me a form of treatment was no treatment....he was right. It was not until my WBC was in access of 250 and my lymph nodes were pronounced that I started Ibrutinib. I am not a doctor, but if you can avoid chemo that would be a great blessing. I never stopped exercising and eating healthy. Got into Reiki and meditation. It a challenge and sometimes your imagination will run away from you, that is why meditation even 10 minutes a day will be a great gift you can give yourself.
Additional complication for me is I developed gastroparesis, unrelated to CLL last June. My diet and guidelines are the exact opposite of what someone with CLL should do!! 2500 calories a day, lots of carbs, no fiber, no fake sugar or sugarless, no nuts, no healthy beans, only white starches, Ensure to supplement calories. Can't afford to have any diarrhea or nausea. I can easily drop 5 lbs in a few days. I am tiny as it is. I have to eat every 2-3 hrs to keep my weight and keep uneasy feeling away. If I don't eat, I get ill feeling. Took me 9 months to gain 4 lbs. and keep it. I have 3 more to go. Hopefully whatever treatment I get doesn't complicate that!
I live in Boynton Beach, it’s a four hour drive and means a hotel. Presently, I see Dr. Jennifer Brown in Boston, which is a three hour plane ride, expensive hotel, and possibly rental car, depending on how long we stay.
We live 35-40 min from each other. I am in Boynton a lot. Have family and friends there. How often do u have to go to Boston? Seems like Tampa a lot easier. My father had CLL and lived in Delray. His oncologist was Dr. Gomolin from Lynn Cancer Institute. Do u have local oncologist? Are there any support groups that meet on Palm Beach or Broward County. Moffitt has one but too far to do that especially under treatment.
He is mine too but apparently one sees him at the first visit then subsequent visits are with Lisa the nurse practitioner. Dr Panilla is involved in research which is why he's in clinic one day a week
Will be thinking of you tomorrow. I was there recently for a mammogram and am waiting for the results...11 years on watch & wait...Trisomy 12 and unmutated and no deletions...have an appointment with Dr Panilla coming up April 30th and am worried...hemoglobin dropped to 8.6 since Jan also hematocrit 29.6, platelets 137 and rbc's also dropped while wbc's have doubled along with an enlarged spleen tells me I'll be starting treatment soon...I just hope it's not ibrutinib which can cause a-fib and I already get a racy heart and palpitations at times. Let me know how it goes. What time is your appointment?
Will post my labs after I get home. I have no clue whether I am mutated or any deletions. Just kept track of WBC, HGB, node size and looked out for other symptoms like fatigue, nitesweats, weight loss the past 11 years. HGB was down to 9.3 last month. I have been reading lots of posts about Afib and how they have meds in place just in case that pops up. I share your concerns about ibrutinib and Afib. Maybe our CLL pals can help us to share their experiences.
You might ask about this trial at NIH. I know of one person from Florida who usually flies into NIH and home again in one day. Flights or other forms of travel are paid for and there is a stipend for housing and meals if you stay over. Acalabrutinib is second generation Ibrutinib and there are several people who are getting very good results with fewer side effects. It is expected that it will be FDA approved soon.
Several people on cllforum.com have been writing about their trial experiences with this drug. Go to clinicaltrials.gov for details.
RecruitingAcalabrutinib in Patients With Relapsed/Refractory and Treatment naïve Deletion 17p CLL/SLL
Acalabrutinib is not yet FDA approved. The NIH has a study and there is a study at Ohio state which adds obinutuzemab and Venetoclax - different order of adding the three drugs in different arms of the study. I don't know whether it will be used after Ibrutinib. I believe that Venetoclax would be more likely, or maybe idelalisib.
An HGB below 10 is reason to discuss possible causes. A full anemia workup would be appropriate to rule out AIHA. If there are other concerning symptoms like your ALC (not the WBC - the absolute lymphocyte count gives a more accurate picture of what is going on) being over 30,000 and doubling in 6 months or less, nodes that are interfering with other organs, and others, then it is probably time to start treatment discussions. Don't let anyone push you into treatment. Find out exactly what criteria the doctor is using and what your treatment options are. Make sure you have had a recent FISH test if it is available in your country. Deletions can change over time. Those deletions can be important when deciding on treatment.
Autoimmune hemolytic anemia. Some with CLL develop it and are treated specifically for it - treatment being different from full out CLL treatments usually.
This is very upsetting! I am at Moffitt to meet Dr. Pinella for my FISH results and recommendation. He isn't here on Tuesdays! How can they give me follow up appt for him on a day he is never here!? I will only see nurse practitioner. Wow! Huge mistake on their part.
Was a miracle I got to see Dr. P. Treatment with my local oncologist. My sister lives in Columbus Ohio. Fortunately her husband has contact with Dr. Byrd. Sending my latest labs for his opinion. Both FL oncologists agreed I am good candidate for chemo. Will post my labs and info later today.
Miracles do happen! NP hurt her foot so they called Dr. P to take over... apparently you usually see NP for follow up. Wish they had explained that before.
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