My mom (now 62 yrs old) was diagnosed with CLL about 5+ yrs ago, and her doctor recently told her that she needs to begin treatment. He recommended her to begin with combination of Rituximab + Fludarabine (in-patient treatment, via injections). I just wanted to know if anyone else has received this treatment before and how was your experience with it? Did you experience any side effects and did the treatment work well for you? I am trying to get a better understanding of it because I've heard of other (and newer) treatments out there for CLL, but her doctor still wanted to recommend this for my mom and didn't really explain the details of what to expect, or what the long-term effects are (if any). Wondering how other people experienced this form of CLL treatment and its outcomes. Many thanks for sharing.
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Dolce1
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Dolce - it is important to find out which treatments are available in your country and whether there are any doctors your mother would have access to who focus on CLL. You would want a doctor who is, at least, a hematologist, not just a general oncologist if possible.
Do you have copies of your mother’s labs and any other test results? Has the doctor told her why he thinks that she needs treatment. Your mother needs to have that question answered before anyone started talking about which treatment. Don’t let anyone rush her into treatment without more information.
Thank you for your prompt response. My mom's seen two doctors here. Both are supposedly the country's best CLL experts. However, one is based in private hospital & the other in public. Now she is seeing the doctor in the public hospital, who is a hematologist. Yes we have copies of her test results & the doctor has explained why he thinks she needs treatment. Her WBC shot up in the past 4 months and he believes the treatment needs to begin because her red blood cells have begun to decrease at a level that concerns him. Thanks for your advice on not rushing the treatment. We've been on "watch & wait" for years, and talk of treatment with the doctor in the private hospital began some time towards end of last year. We wanted to find out more about her options & didn't know what her doctor would ultimately recommend. The doctor in the public hospital then suggested we continue to "watch & wait", and only now has decided to begin the treatment because of the reasons I briefly explained above.
Dolce, welcome on making your first post after being a member for so long
I'm not familiar with the health system or drug availability in Malaysia, although I understand hospitals and Drs are good, or your mother's CLL profile, so it's difficult to comment on what has been proposed for you. Other options may be available if your mom has some insurance.
FR, without the cyclophosphamide, is sometimes given if the patient is a bit more frail than usual or has other health complications. Is that the case for your mom?
Hi Jackie, thanks so much for responding and for your warm welcome. Yes I became a member quite some time ago, back when I wanted to learn more about CLL & fortunately found this forum. Reading other people's experiences & the treatments they underwent helped me explain to my mom about her CLL and how the illness is treated in other places. I did a bit of research on FR & noticed the doctor had not mentioned cyclophosphamide, which came up in many of the articles I found. Yes, perhaps it is because of health complications she has. She doesn't appear to be frail for her age (i.e still very active & no other major health issue at the moment, beside the CLL). But she was on blood thinning medication for quite a number of years because of a blood clot. She's been off this medication for several years already.
Would help to know her markers. I had FCR. Last year at 63 years. Went very well. Had a port put in to save my veins and keep arms free. Was very uneventful. Just a little tired the first few days after treatment and lost my appetite the 2nd day after treatment for 24hrs. My Rituxin was split over 2 days. If given in one day should be no less than 5 hrs. Slower the better.
Always good to get second opinion from a specialist. 💕
The numbers to consider for starters are the ALC (absolute lymphocyte count, not percent - a part of the WBC), hemoglobin, and platelets. Your mother's doctor should be checking her lymph nodes and spleen for enlargement. Can you share what her numbers are currently and how much they have changed from one test to the next over the last year or so - actual numbers? The trends are as important as the numbers themselves. Did the specialist your mother saw offer an opinion about treatment?
I would definitely ask why FR rather than FCR as Jackie suggested. There could be a good reason. A good friend who was very knowledgeable about CLL chose to just get FR. I would also ask to be given information about which other treatments are options there.
Your mother is very fortunate to have you to help her deal with making a treatment decision. It is so important to look at all of the options before committing to one. The currently suggested treatment could be the best choice for your mother, but you want to feel confident going into it, not wondering if there might have been something else.
My first treatment was FR only and I received a 5 year remission. It was a great 5 years. My specialist felt there was no benefit for me to add the C and become more toxic. I am Trisomy 12 and unmutated. I was fortunate it worked. Good luck. Sally
Hi Dolce, My husband was diagnosed with CLL when he was 60 years old, at that time FCR was essentially the gold standard here in the states. He went through chemo for eight months and went into a complete remission for 6.5 years. He tolerated the drugs extremely well. I would certainly ask your doctor why no cyclophosphomide. Currently Imbrutinib in pill form seems to be the go to treatment if you can afford it. The most important thing for you to do in order to help your mother is exactly what you are doing, educating yourself and don't be afraid to ask questions of the medical professionals. May your mother be around for many more years she obviously has a very caring daughter.
Good luck with whatever treatment you approve.I went thru FCR and after 6months was molecular remission.Fast forward 28 months and I developed acute myleoid leukemia.The Onc/hem told me 4 days after I started treatment for AML that The F infact triggered the onset of AML. I have now just finished treatment with Vyxeos and am in complete remission again. Be careful of this older style treatment for CL L
Hi, Dulce1! Hope you're feeling better, having heard from some of the group!
After reading their responses, I figured your head was spinning even more than when you started. All of these questions about your mom's counts & recommendations about what she should think about doing, when I sense that your main concern is what she can expect to experience while undergoing treatment.
I'll start by telling you that I was diagnosed 16 YEARS ago & I'm still here. I've gone through several forms of treatment & each has its own positives & negatives.
My original form of treatment (after several years of Watch & Wait/w&w) came in the form of IV infusion of Fleuderabine & Rituximab. During that original treatment (I've since had so many I've lost count.) didn't make me sick. What I found was that I needed to eat smaller amounts more frequently. If I allowed myself to get hungry, I would get queasy.
During the infusions, your mom will probably be offered snacks & drinks; it's very important to drink plenty of fluids. Going to the bathroom a lot helps to flush out those dead leukemia cells before they can damage her kidneys (plus avoid a long list of potential issues which her doctor can share w/the two of you).
Another thing to keep in mind is that she will be given BenedryI through her IV to help avoid any allergic reactions. This has the potential of making her drowsy & MORE LIKELY to FALL during her trips to the bathroom.
Also, BenedryI can tend to cause a person to become jittery, especially in combination w/caffeine, so it's best if she can avoid caffeine during the infusion & possibly for a couple of days after (depending on how quickly her metabolism processes it). I know in my case that I felt like my insides were having a nervous breakdown & wanted to jump out through my skin! My hands trembled to the point where I could barely write my name! Please keep in mind that we're ALL different & your mom might not be so sensitive to the caffeine/BenedryI combo!
Your mother is VERY BLESSED to have a caring & concerned daughter such as yourself! Whatever form of treatment she eventually experiences, now & in the future, keep in mind the often unsung heroes in this ride: THE NURSES @ the infusion center! They are KIND, PATIENT, & EXTREMELY KNOWLEDGEABLE! NEVER think a question is silly, & don't be afraid to ask them questions. They are ANGELS on Earth & they can become the providers of tremendous comfort to patients & their loved ones alike!
Best wishes to you & your mom; you're both WELCOME in here, no judgements or bullying allowed! 👩❤️💋👩💑👨❤️👨
So many questions; we all have them to start...& later as well. Just to put you BOTH @ ease, I was diagnosed in June of 2003 when I ended up in the hospital due to pneumonia.
It was several years of watch & wait before my oncologist said it was time for treatment. I started w/Fluderabine only, then the next time around, Cytoxin was used & I had difficulty w/that. Later, it was Fluderabine w/Rituximab. Later on, I had Imbruvica (Ibrutinib) pills for a YEAR & all I got out of that was curly hair...for the first time in my life. I still have some of that curl, years later. NO! YOUR MOTHERS HAIR WILL NOT ALL FALL OUT! There will likely be more shedding than usual, but nothing serious!
She WILL need to avoid coloring & perming, though. The chemo weakens the hair & makes it more likely to be damaged by harsh treatments. She may want to use milder shampoos & moisturizing conditioners.
When the Imbruvica failed, my oncologist put me on Chlorambucil pills (which require refrigeration). Three weeks on that & my white cell count was down to normal range. Unfortunately, a couple of months later, white cells were back on the rise, quite rapidly.
Most recently, I've been back on Rituximab (for nearly a year now). Currently, I get an infusion once every 3 months. Maintaining well @ this point. My doc says labs are best he's seen in some time.
Regarding reactions, we're all a little different, so your mom may or may not have side effects. Best thing to do is to let the staff @ the infusion center know ANY QUESTIONABLE sensations. The center where I go makes snacks & drinks available as requested. I'd recommend that your mom take advantage & not allow herself to get hungry, as that lead to queasiness for me. Drinking fluids helps to flush the chemo quickly through the kidneys. She CAN go to the bathroom whenever needed. The "carts" that hold the chemo bags have battery packs, so unplug & go! There's potential for dizziness &/or jitters (or an "inner" trembling), so SAFETY FIRST. If she needs help LET THEM KNOW!
Undoubtedly, your mom will receive an info packet that will tell her of any reasons for concern. While on chemo, we're @ a higher risk for INFECTION, so keep track of her temperature & watch for any indication of fever. Something people don't always mention? She will need to avoid GRAPEFRUIT while on chemo. It interferes w/the action of the medication.
Rituximab is one of the milder chemotherapies. Fluderabine is harder on the immune system & does damage it somewhat, but it DOES come back!
Hope this sets your mind @ ease! It'll become "old hat" before you know it. Meanwhile, protect your mom from potential infections, continue w/the antibacterials, hand washing & mask wearing. If your mom hasn't had the Shingles vaccine, she'll want to discuss this w/her oncologist. She'll need the "dead" one, not the "live" one. On these chemotherapies, she's @ higher risk of getting Shingles! I've had them...she DOESN'T WANT THEM! The Pneumonia shot is a good idea, too. Again, ask the doc.
You two can get through this! It'll bring the two of you CLOSER...in a GOOD way! 🙋🌈🙏 P. S. I'll be 67 in a couple of weeks.👍
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