83 year old dad diagnosed with stage 4 CLL/SLL. Doc wants to start Rituxan (once a week for 4weeks) then Ibrutinub. Does this seem right????

[Jenette01]

I have searched over and over, and I can’t find anywhere that Rituxan is first line therapy for stage 4 CLL/SLL. So confused!

[cllady01 Former Volunteer]

Jenette, if you want to explore the possibilities for treatment, here is published manuscript on a National Institute of Health site that explores the "Management of CLL in the Elderly" that will give you an idea of what MAY be available for your father's treatment--all depending on his over-all health status.

Also, if it is possible to do so, and you would feel better about the situation, getting a second opinion is a very good thing. If your father sees a CLL Specialist, you can know that the Dr. has experience with treating CLL in many patients.

I hope this helps, it is a long read, but if you can get to the possibilities and esp. the conclusion statements, you may find some help.

ncbi.nlm.nih.gov/pmc/articl...

BTW, I am not saying the route your Dr. is suggesting is not good, that all depends on your Father's status.

[Jenette01 in reply to cllady01]

Thank you very much for your reply. I will keep searching

[Nfeeney]

I agree a second opinion is important. Sometimes doctors get stuck in the way to do things and do not keep up with the latest in cures. There are some new combo meds that I see on sites. Age is a factor as is stage of illness also genetic testing can tell doctors the type of meds that do best. Best of luck

[Jenette01 in reply to Nfeeney]

Thank you so much for your response. I will continue to search for appropriate treatment, even though I feel his disease is beyond any successful treatment at this point.

[Cammie]

Rituximab has been used as a single therapy previously.

At 83 your father may well have comorbitities that could exclude him from certain more aggressive treatments.

This siutuation needs you to manage and discuss the proposed treatment with your fathers medics.

If you have concerns then you should contact the doctors and discuss fully your concerns and the reasoning behind the proposed treatment.

Others have suggested a second opinion. That’s fine but you need the facts behind the initial suggested treatment and be fully aware of the reasoning why this has been suggested to obtain a second opinion.

Put your mind at rest! Make sure the best treatment is available and given.

You must take control!

[Jenette01 in reply to Cammie]

Thank you for your reply. I will definitely be taking control and try to find the most appropriate treatment at this point.

[lankisterguy Volunteer]

Hi Jenette,

I had Rituxan weekly for my first therapy when I was 60, but later learned that my hematologist was uninformed and using a protocol for Follicular Lymphoma.

I'm not proposing that your father's doctor has made the same mistake, but I certainly would ask for an explanation. I believe that the few clinical trials where Rituxan and Ibrutinib were combined, failed to show a benefit. And Rituxan has some side effects that might be a challenge for your father.

Ibrutinib is usually used alone (or in some more difficult cases combined with Venetoclax). Ask the doctor to provide a detailed explanation of why they are combining two drugs when Ibrutinib only would be the more conventional and conservative treatment.

If there is no urgency to start treatment for your father, I strongly suggest seeing a top CLL expert for a second opinion prior to starting treatment. If you tell us generally where your father lives, we should be able to suggest some very experienced experts.

Len

[Jenette01 in reply to lankisterguy]

Thank you so much for your reply. This doc wants to follow up with Ibrutinib after the 4 treatments of Rituxan. Unfortunately, my dad is so very uncomfortable. His spleen is almost 3 times normal size, his prostate is enlarged and there are enlarged/inflamed lymph nodes throughout his entire abdomen. This is all pressing on his bladder and creating the urgency to urinate every 15-20 minutes. All he wants to do is sleep, and it seems like every day he just gets worse. In my heart, I believe that he is past the point of being able to be treated to allow him to live comfortably after treatment. I just think this disease has progressed past that point. I think the Rituxan treatment would just cause him more pain and suffering without offering any real benefit at this point. I can’t seem to find any information regarding appropriate treatment of stage 4 CLL/SLL elderly patients and their outcomes.

Thank you again

[lankisterguy Volunteer in reply to Jenette01]

Jeanette,

What you described- enlarged spleen, nodes etc. should be resolved IMO by either Ibrutinib ( very likely quickly) or Rituxan ( it might - more slowly).

I am not a doctor, but IMO I don't think he is past the point of treatment, and it sounds like your doctor agrees. Stage 4 in CLL/SLL is NOT a death sentence like it is in other cancers- it just means it is time to treat it = large nodes and spleen, dropping red blood component causing anemia.

I had the exact same problems - very large 9.7 cm nodes pushing on my bladder, enlarged prostate and spleen over 2X normal. Idelalisib corrected those for me within a few weeks. Ibrutinib works just as quickly to shrink nodes and spleen for some people.

The link that CLLady listed above says exactly the same thing as I am:

"The availability of Bruton’s tyrosine kinase inhibitors and phosphatidylinositol 3-kinase inhibitors and other novel therapies will allow elderly CLL patients to receive more efficacious treatment with greater tolerability than available with traditional approaches for management of the disease."

The Bruton's tyrosine kinase inhibitor = Ibrutinib

the phosphatidylinositol 3-kinase inhibitors = Idelalisib which I took.

Regardless, it sounds like you need to move forward quickly to reduce his symptoms, so I suggest you pick something and get treatment started.

Len

[tsvieps]

Rituxan has not worked well alone as a 1st line therapy. It has worked well in combination with Ibrutinib in trials. Other combos also have worked well. I am taking Ibrutinib and Venetoclax. They are oral and less trouble, but in the US also more expensive for those on Medicare. Rituxan is covered directly as a doctor visit. Oral meds that are expensive cost about $5k before the price drops to 5% of nominal.

Other forms of BTK inhibitors, such as Acalabrutinib seem to work a bit better with less side effects. Also Rituxan is no longer the preferred CD-20 MAB. The owner, Genetech, now has a better version that has done better in trials, but Rituxan was what has been tested in combo with Ibrutinib. So more complete trials are using the older versions of these drugs. They proved out, but likely the newer versions would be even better when the trials catch up.

[tsvieps]

My spleen was 4x normal size before I started Ibrutinib; it is now just a little oversize. My nodes were highly expanded and visible from across a room. Now they are about 5% of their maximum...after over 3 years. I paid for a 2nd opinion from an outfit that does not give medical advice. Rather it supplies a whole notebook, one for each of various cancer types. The notebook explains the different treatments in use, what is in trials, and what "alternate" treatments, such as green tea supplements, have science behind them and which do not. It also lists recommended places to go in different parts of the world, depending on one's orientation. My orientation was to combine Western and Eastern (read herbal) healing traditions and take an active part in doing research and choosing treatments. After reading the binder, I also paid for a phone conversation to pick out an oncologist and other "healing modalities". To avoid what might look like a commercial plug, if someone responds that they are interested, I will supply my LinkedIN name and allow people to make contact with me and supply more info privately.