Things were going so well. At 63 and while living in France for a work contract, my husband, who already has HF low EF (which I managed to improve recently to an EF of 43%) and who has always been in excellent shape with diet and physical exercise, was diagnosed with CLL in the spring of 2023 . We made dietary changes and added supplements to support him, blood stats improved and in December the General Hemotologist said his blood was stable and mutation was determined as 13q. She said see you in 6 months. January was so blissful until Jan 30th and a routine colonoscopy where the Gastroenterologist found colon cancer in the sigmoid......PET scan showed nothing except something decipherable on the liver but they can't confirm anything on the liver yet and will not do the surgery until they are sure. Second PET scan and this time of only the liver is tomorrow afternoon.
Here is my question to this amazing collective consciousness of knowledge: Does anyone know of any treatment my husband should avoid for colorectal cancer that would worsen either his CLL or affect his heart negatively?
I am building a case for a transfer of his care for both his colorectal cancer and his CLL to the hospital in Bordeaux because they have the only Hematology clinic that specializes in CLL in our region and they have alternative treatments for colorectal cancer (we are trying to avoid chemotherapy IF the liver is involved). I will use this information in meetings with his GP (who's job it is to do the transfer to Bordeaux) and to his current Gastro, who will be proposing surgery and/or treatment once the liver CT results are in.
With gratitude to you all.
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Minou1
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Hello Minou, I hesitate to respond, because I do not know what "HF low EF" is. I barely understand CLL, and am not qualified to discuss colorectal cancer. I suspect many here hesitate to comment without feeling like we can offer useful info to you.
While most CLL specialists are moving away from chemo treatments (tx), some CLL patients can undergo chemo: these are people who are 13q mutated. You mentioned that your husband is 13q, but do you know his IGHV mutational status? 13q is good and mutated is even better. If his FISH results showed 17p, chemo would be contraindicated.
Regardless, it is always best for CLL patients to see a CLL specialist, not just a hematologist. I hope the argument can be made to persuade them to send your husband to Bordeaux, especially if you believe he can get better care there.
Again, I don't know enough about this topic, but I do know that, while CLL can grow slowly (and in many cases never even require tx), colorectal cancer can be very serious. At this point, addressing the colorectal cancer likely needs to be the biggest priority.
Mostly I want you to know my heart goes out to you and your husband. I am holding you in my thoughts and send best wishes.
I am not a doctor but will suggest at this point, with the CLL doctor seeing your husband every six months, the colon cancer is likely going to be your main concern for awhile. My brother-in-law went through treatment for the colon cancer about 10 years ago and is doing fine now. It would be reasonable for the medical team to consult with each other, of course.
Hello Minou1, my sympathy for your husband's current medical issues.
It's true, there is a great deal of collective knowledge in this group concerning CLL. A few members are even medically qualified (I am one of the vast majority who is not). As a long-term CLL patient I can only advise that, based on your husband's recent diagnosis, FISH analysis, and half-yearly monitoring schedule, he is probably several years away from needing treatment for CLL. If his IGHV status is "mutated", that probability becomes stronger.
With regard to the treatment of your husband's CRC, he must decide. By all means consult with his hematologist, but I expect the answer to be something like: forget about CLL, optimise treatment of CRC.
I'm very new to CLL and cancer in general. My partner was diagnosed with CLL in 2022 and CNS lymphoma shortly after. He started Venetoclax and obinituzumab for his CLL, then it was discontinued to prioritise treating his lymphoma. He did 4 cycles of MATRIX (chemo) as an inpatient followed by an auto stem cell transplant. He was 36 when he was diagnosed and I'm not sure about the deletions etc. But he has achieved remission for both his cancers.
Outcomes will depend on so many different factors that arise daily, so I would say ask questions and make sure they explain why they have chosen the plan they have.
The first thing I did after my partner received his diagnosis was Google the top 10 CLL specialists in the UK. It just so happened that we had already been referred to one of them under the NHS. Rather than uprooting your life to be treated by someone else, you can get in touch with a specialist and get their opinion on whatever treatment plan your local doctor suggests. That will save costs and make the process easier overall.
This is just my anecdotal advice, though. From what I gather, colon cancer usually requires surgery, but if chemo is suggested, try your best to make an educated decision, because ultimately the doctors have taken an oath to do no harm, so it's worth hearing them out.
Hi, I have CLL and had colon cancer this summer. I had 4 chemo sessions using Oxaliplatin and taking Xeloda pills. After the surgeon had removed the small tumor I took the O and X for 4 months and it cured the colon cancer. Im still on Venetoclax for the CLL.
Hello and thank you for your post it is very helpful. So you were able to have surgery and treatment of the CRC even during treatment for CLL. That is encouraging. Can you clarify if you had any metastis to your liver?
no, nothing with liver and I caught it very early. I also didn’t lose my hair 😊 but the treatment worked and I read in a FB group that many people were using the combination of the two meds with success. I wish you a good treatment and may it all be a bad memory in a few months.
I just looked and it seems to have the title Colontown. I know there are several groups that address different levels and kinds of cancer. I hope you find it. I think mine is colontown downtown. Wonderful people.
I’m so sorry to hear of the path that you are on. My husband and I lived in France for 9 years. I had reconstruction done at the Bergoine Hospital in Bordeaux. I can assure you the treatment there is second to none. It’s purely a Cancer hospital.
That is a good reminder. My husband, at 63, is in amazing shape, a healthy weight, eats a pristine diet, and takes many suoer nutirents. Thank you for the reminder that he still has age and good health on his side to survive both treatment and surgery.
Bonjour Minou1, I do not have any experience with colorectal cancer but I do have many years of experience going to the Bergonie Cancer clinic in Bordeaux. I can highly recommend them! I was diagnosed in 2018 while living in France, Tarn et Garonne region. I have since moved back to The Netherlands and am still going for treatment, medication to Bordeaux. I have an excellent hematologist, who speaks very good English that I see there. Should you want to know more send me a message and I'll be happy to provide more info. Strength, courage and prayers going your way.
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