Hello my name is Aylin. I'm new in the group. We live in Turkey so please forgive me when I make errors in my English My husband was diagnosed in 2012 with CLL at the age of 48. He didn't need a treatment until 2015. He had a FCR tratment when his white cells were very high and the platelet level was low. He was OK until last month. He suddenly lost 10 pounds in a month, and started to sweat extremly when sleeping. Our doctor started with R-Benda protocol (Rituximab) last week, it will last 6 sessions, 1 session every 4 weeks.
Did anyone had the same therapy? I know that every patient is unique but I want to know what comes next. Will he need a therapy every 2 years? What can I expect from the future?
And what is the best CLL Center in England? We want to make a visit when the therapy is over and ask for recommendations.
Thank you all
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aylinozel
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I’m sorry to hear your husband finds himself in this situation but share with you the need for a second opinion at a Centre of Excellence in England. Can you indicate where in England you intend to visit. I was wondering if there’s a specific area you head for to visit relatives. Can you give more information and people will suggest particular hospitals. Is this perhaps a consultation you are expecting to fund privately?
Has his specialist done a battery of tests and given an opinion as to what he thinks is happening with your husband because a sudden weight loss and extreme night sweats is a bit concerning and obviously you’ll want to know he’s receiving the very best advice. I’m sorry I don’t know what CLL services are like in Turkey but your written English is excellent.
Thank you for your detailed answer. Yes we want to fund the consultation privately.
User Seoul suggests to visit Cologne, Dr. Hallek. Maybe I first try it there since we have allready a Schengen visum.
Our doctor suggested to make a FISH test 1year ago. As a result he claimed that this CLL type progresses slow. But only one year after, the loss of weight and decrease in PLT were a shock for us. So again chemotherapy.
That is why I need a second opinion. I know it is not possible to predict the future, but our children are 7 and 9, so I want to ensure that our dad lives as long as possible.
I have cll but so far have not needed treatment. However I am interested in the non-chemo alternatives. Immunotherapy is one such. Rituximab is an immunotherapy drug. It targets the CD-20 marked cll cells, allowing the main immune system to destroy them.
There are side effects.
I have a friend who has NHL which is related to CLL. He had chemotherapy and afterwards was put on a "maintenance" dose of Rituximab. He experienced side effects and was taken off it after a while but tests showed his blood counts were back to normal.
In 100 years time we will probably look back on these early immunotherapy treatments for cancer in a similar way we now look back on such treatments as infecting a person with cowpox in order to make them immune to the much more serious smallpox. In other words, they are crude. But if they are effective then perhaps the side effects are worth tolerating.
Is the FISH test done in Turkey to determine a patient's deletions? What is available from one country to another can be very different. I am of no help re: doctors in the U.K., but many members live there and will be able to make suggestions.
Yes they did the FISH test and we were informed that the type of CLL is slow-going (not sure if the word is correct 😕) But after 2 years we are at the same point. Thank you for your interest, wish you all the best
I just started my 4th cycle for BR today. My 1st cycle got me a bed in ICU because of low platelets (1000) and bleeding in my colon from infections. Other than that the BR has lowered my wbc numbers back to normal and my platlets are back in the 200k range. The BR treatment otherwise has few side effects for me. A little fatigue, shortness of breath. The pre and post meds must be working.
Instread of travelling to the UK you could alternativly visit cologne uni clinic. There is Prof M.Hallek with his team. They are world wide known specialists in CLL treatment.
First, realize that I'm NOT a doctor, and I'm not familiar with the term "R-Benda", but I have had CLL since 2003, and I've had 6 sessions of Rituximab-only treatment. My "sessions" were of Rituximab, 750ml, given IV every week for 4 weeks. Side effects were minimal, and my blood numbers responded very well, & very quickly.
I think the doctors have a name for it, but biggest problem is that the effectiveness of each treatment session lasted shorter and shorter. My first treatment session put me in remission for about 2-3 years. Then, they each only lasted about ½ -3/4 as long as the previous treatment. After 5 or 6 treatments, the remission was down to less than 6 month.
Don't get me wrong, my Rituximab treatments got WONDERFUL results (REMISSION - each time). But, time eventually runs out. Fortunately modern medical technology came to the rescue. I'm now on Imbruvica, and many, many articles show that they are developing even better pills.
Thank you so much Gary I wish you all the best! One question, our doctor suggested to make a HLA test so we can think of a Bone Marrow Transplantation in the future. Unfortunately his sister and brother didn't match. But did you think as an option? 6 times of chemo must be very exhausting for you..
It wouldn't hurt to have an HLA test, but I wouldn't think about transplant until you see how your husband does on this treatment and what a second opinion doctor has to say. Don't worry about his siblings not matching. If he needs a transplant a well matched unrelated donor will also be OK.
Rituxan monotherapy is commonly used for follicular lymphoma, but not for CLL, though it was the right thing for my very atypical CLL when I was first diagnosed. It attacks CD20, but you need enough for it to attack. I'm also not medically trained, but would guess that the more you used it the less of a target it had.
R- bendamustine is Rituxan and Bendamustine. It has proven to be an effective treatment for many. Those with some markers don't do well on it, which is why it is important to have a FISH test before starting treatment. Your doctor needs an updated test as the markers can change. Many get very good remissions on BR.
Dr. Hallek would be an excellent choice for a second opinion. Chris (CLL Canada) might know of others who would be closer than the U.K.
Aylin - Thanks for the concern, but my "sessions" of Rituxan therapy were pretty mild - each consisting of about 4-6 hours, trying to relax in an infusion lounge chair, while getting the IV. As I said, very few side effects (although, I had Rituxan only; I don't know what the addition of Benda.. does.
Pat (pkenn) - When I was diagnosed with CLL, right after The US Civil War (really in 2003), I was lucky to find a hematologist who was familiar with CLL, though not a "CLL specialist". He never mentioned the FISH test, and I had not discovered it via this (or any) CLL blog. Thus, our method of determining the best drug was, "try what sounds good in the medical literature, and see if it works". Fortunately, it did. So, Aylin, I'd suggest you take heed in what pkenn, CLLCanada, & Newdawn say about FISH and a 2nd opinion, if you can, but realize that things may work out, even if these more modern approaches can't be done.
I was also diagnosed in 2003. My bone marrow biopsy included flow Cytometry and a FISH test, though I had no idea what it meant. My first doctor was a general oncologist who put me on chlorambucil and prednisone. I was in the hospital septic within a week. The only good thing about that was that it got me referred out of network to UCLA. I'm glad that Imbruvica is working so well for you!
Hello Aylin. I had four cycles of Bendamustine & Rituximab the last one being in January 2017. I have catalogued my journey here from being on watch & wait through treatment to present day. Please feel free to browse, hope it helps. Regards.
Sorry for borhering you, where in Turkey (preferable Istanbul) there is a clinic, which can treat a patient with Rituximab? My friend has got a diagnosis multiple sclerosis last week, and needs treatment in January.
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My husband was diagnosed in 2012 with CLL at the age of 48. He didn't need a treatment until 2015. He had a FCR tratment when his white cells were very high and the platelet level was low. He was OK until last month. He suddenly lost 10 pounds in a month, and started to sweat extremly when sleeping. Our doctor started with R-Benda protocol (Rituximab) last week, it will last 6 sessions, 1 session every 4 weeks.
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