Treatment Decision

[Elam]

I had my checkup today and may be facing the need for treatment at some point. My WBC is 145 and my lymph number is 133.4. My HGB is 10.9 and has been steadily dropping. I really only feel a slight loss in energy and had some more frequent infections, but no other symptoms such as enlarged lymph nodes, fever, or night sweats. My doctor has mentioned Bendamistine/Rituxan IV for several treatments or possibly Ibrutinib orally. He has also mentioned a trial of the chemo followed by Ventalyx orally. I am not inclined to start treatment yet. I am starting iron supplements to try to help the HGB issue. Go back for checkup in 3 months. Ant thoughts appreciated.

[AussieNeil Administrator]

Hi Elam,

Given worsening anaemia is likely to be your trigger for starting treatment, I can appreciate why you are trying to improve your haemoglobin. However doing so successfully via an iron supplement will only work if you have low iron stores. With CLL, your anaemia is most likely due to a combination (in reducing likelihood) of bone marrow infiltration, an enlarged spleen (splenomegaly) and auto-immune hemolytic anaemia (AIHA). I recommend you see your regular doctor and ask for an iron/folate/B12 studies blood test. That will highlight whether supplementing any of these may improve your anaemia. A Coombs/DAT test will identify if you have AIHA.

Given it is likely that you will find that you are fine with regard to these supplements, you'll need to learn more about your particular CLL markers that will help you decide your best treatment options. You need to know your IgHV mutation status and your FISH results. That's something your specialist doctor should know already. With the choices available to you in the USA, you wouldn't want Bendamistine/Rituxan treatment if you were IgHV unmutated or had unfavourable FISH results.

Have you asked about what clinical trials are available to you?

Neil

[cajunjeff in reply to AussieNeil]

I agree with all of the above. I might add, and this is just a personal opinion, I would not choose BR over ibrutinib in any situation I can think of as described above.

If I were young and had mutated IGHV Cll, I might consider chemo if it were FCR because it’s potentially curative. Even then I would worry about the long term side effects of chemo vs the more gentle (for most) and less toxic (for most) ibrutinib.

BR remissions are shorter than FCR, and if it’s not going to be potentially curative, I’m going ibrutinb.

Cll is a long fight. I would do the least harm now and stay in shape for the next round, whatever it might be. I would take ibrutinib over BR regardless of mutation status.

[Elam in reply to AussieNeil]

Thanks for the information. Some more about me. I am a 70 year old white male, 13q deleted, mutated. Diagnosed about 2 years ago. Regarding the anemia, some tests about 6 months ago showed ferritin at 19.95, iron at 83, and TIBC at 348. I expect that indicates taking iron supplements won't help. The trial mentioned by my doctor here in Tennessee was a chemo (not sure of type) for a month or so followed by Ventleyx (sp?) orally. I am thinking about checking on a second opinion at Vanderbilt Medical Center. Some of the others responding were not in favor of the BR treatment. Your thoughts?

[HopeME in reply to Elam]

Hi Elam:

Neil is down under and likely snoozing at this time. I'm sure he will back to you when he wakes up. You are older than I and you have mutated disease so maybe BR is more appropriate. I tend to agree with Cajunjeff that opting for Ibrutinib is the way to go but I'm not a doctor so please follow through and get that second opinion. It is worth the time and effort. I simply want to make sure that you get good advice before making such a big decision. I didn't have the opportunity to consider all of the alternatives when I made my decision and I don't want that to happen to you or anyone else.

Good Luck!

Mark

[AussieNeil Administrator in reply to HopeME]

Thanks Mark.

Elam, with regard to whether BR is right for you, only you can decide that. Given FCR is less well tolerated than BR for those over 65, BR may be the better choice for you on a financial basis. 6 months treatment and you are done for as long as the remission lasts. That won't be indefinite as is possible on FCR with your good prognostic indicators, but may have the comparative advantage of you not having to live with side effects from a non-chemo treatment indefinitely. BR also has the advantage of far more knowledge of long term effects. We are still accruing that data on non chemo treatments. Unfortunately there's no way of knowing how an individual will tolerate any treatment.

Definitely go for a second opinion and look for opportunities to have a combination non chemo treatment that may give you a good chance of achieving remission after a year or so, such as Ibrutinib + Venetoclax, when you can stop taking daily maintenance meds.

Neil

[GMa27]

Iron pills will not improve anemia. That is caused by our disease. Did your doctor test you for AIHA? It's a simple blood test. If u have that then there is a treatment separate for that. If not then you could be near treatment time. That happened to me. Got anemic in my 11th year of W&W. What are ur markers?

[Mldeterm]

I would seek out a CLL specialist opinion prior to treatment decision if you can. In my research in the US BR should be used only for mutated elderly patients who cannot tolerate Ibrutinib which would be a red flag to me that your dr is not up to date on CLL treatments. As others have said make sure you know if you are mutated and what your FISH results are prior to considering any form of chemo.

[HopeME]

Elam: I want to echo Neil’s insightful comments. I was diagnosed in October 2017 with SLL and quickly thereafter experienced rapidly falling HGB. By April 2018 the oncologist recommended I start BR which I did without question because I was at a major Boston hospital and the oncologist had lots of grey hair and a very good resume. Big Mistake. Let me repeat, Big, Big mistake. Did I need treatment? Absolutely. Was BR the best treatment for me a 55- year old patient at the time with no other health issues? Most definitely not since my disease is unmutated and has a Trisomy 12 addition. Fortunately, I had a good response to BR but it won’t likely last very long given that my disease is unmutated. If I had known what I know today I would have tried to get into one of the combination trials such as the I V O trial that was open at OSU. I am now back on watch and wait being monitored by experts at Dana Farber. The lesson I am trying to convey is get to the most qualified CLL doctor as soon as possible so you can weigh all of the complex options. There are so many treatment options/trials in the US you owe it to yourself to work with a doctor who is immersed in studying the disease and these treatments.

A comment about falling HGB levels. That was my trigger to start treatment and at the time I, like you, felt pretty good. I remember being at the driving range a year ago and as I walked back to my car I noticed a message on my phone. It was my oncologist telling me I needed to come in the following day for a blood transfusion. What he is he talking about I thought? Well he was correct that I had anemia and it was subsequently determined that it was triggered by 92% cancer bone marrow infiltration. I could have taken iron supplements by the pound and it wouldn’t have mattered. I’m not sure if this is causing your anemia but there is a strong possibility it is the case. What I want you to be aware of is if you wait too long falling anemia can be very difficult to quickly reverse and most treatment options will make anemia worse before it gets better. That is what happened to me. I started BR treatment a year ago this week and my HGB plunged ultimately falling to 5.3 and I felt like I was mired in quicksand every time I had to walk across the room. I became transfusion dependent for about 5-6 weeks. The optimal approach to our disease is watch and wait for as long as possible but many make the mistake of waiting too long before starting treatment. Being too weak going into any treatment protocol can be as bad as starting too early. Knowing when to start is an art not a science. I don’t want to scare you but you really should seek out expert advice.

Best,

Mark

[Jm954 Administrator in reply to HopeME]

Well said Mark!

Jackie

[Justasheet1 in reply to HopeME]

Mark,

I agree with your entire response. You do assume that you won’t have a good response from the BR. Never assume with this cancer. I too am unmutated but also with 11q-

Availability to these new meds was an issue for me due to insurance and just bad timing. Ibrutinib and idelalisib was all that was available via clinical trial for me. I tried to get Ibrutinib but got randomized to FCR in one trial, so I dropped out and instead enrolled in BR+\- idelalisib. I wanted the new stuff. I got the placebo in the trial instead. FCR was the Gold standard 5 years ago and BR was easier to handle but also available to me.

However, I’m glad I avoided FCR and I am month 56 of remission from the BR. I’ve worked and traveled and retired. I’ve been lucky. No illnesses at all, one cold in over 4 years.

My point is BR although statistically inferior to the new drugs is not always. All drugs have side effects and everyone is so unique in these adverse events. Someone once told me that a person who has one hand in a bucket of ice water and the other hand on a hot stove is statistically quite comfortable. So throw numbers out and get advice from an expert as you advised. Great advice. And I believe you too will do great from your BR!

Jeff

[HopeME in reply to Justasheet1]

Thanks Jeff. I appreciate your response and positive energy. I often think about you and Scarletnoir as examples of HU Members who had good responses from BR despite having unmutated disease. I did get a solid response from my treatment and I haven't had any illnesses either so maybe I will also be fortunate and my SLL will be held at bay for a while. I am living life to the fullest and thoroughly enjoying myself in the meantime!

Best,

Mark

[Seok]

Hi Elam

I too started taking Ibrutinib due to anemia.

Prior to that, despite blood tests showed that my serum iron level and iron storage was adequate, I tried taking iron supplements cautiously. It didn’t work at all.

Please bear in mind that iron can build up to dangerous levels. That excess iron can deposit in organs such as the liver, heart, and pancreas, which can lead to conditions like cirrhosis, heart failure, and diabetes.

[MsLockYourPosts Passed Volunteer]

If your doctor isn’t Ian Flinn, I would get a second opinion from him. If he is your doctor I would ask him who else within traveling distance has trials that might be worth considering. Another consideration would be a trial at NIH. Everything medical is free there, and they pay for transportation if you are accepted into a trial as well as offering a stipend for lodging.

[cllady01 Former Volunteer]

Elam, I second MsLockYourPosts suggestion of a Dr. I have sent you a PM (the Chat button above should like up)

[closh]

Weird isn't it - Ibrutinib can make hair curlier and Venetoclax can make hair greyer. What is it with targeted CLL treatments and hair ...

[Hoffy]

I would go nonchemo treatments. ASH2018 papers should Imbruvica is safer and more effective than FCR or BR. The data was very clear. Look at my past posts.

I am biased for combination treatment since I have done well so far on a combo trial Imbruvica plus ventoclax. The CLL Society web site has very good information.

The AVO trial looks interesting. It is in many locations.

Be well,

Hoffy