Has anyone with CLl dealt with Neuro Endocrine cancer (liver) as a second cancer?

[aboylan]

FOURTH Cancer. Melanoma, CLL, Prostate, Neuro Endocrine

I stopped Imbrubica in July 2019. In the last 6 months my lymph nodes in my neck were very noticeable. WBC were at 58,000. I was tired but felt ok otherwise. Decided it was time for treatment. Gazyva and Venetaclex was the treatment recommended. Went in for pretreatment and my labs reveal WBC were 113,000. In addition my Sodium level was 112. Admitted to hospital. Sodium stable but they discovered I have neuro endocrine cancer. I was very surprised since I had a PET scan from head to toe Sept 29 2021. Going for my first Gazyva treatment Tomorrow. Wish me luck. This last month has been a real roller coaster ride. Has anyone dealt with CLL and Neuro Endocrine cancer (liver)?

[Vlaminck]

Best of luck in dealing with these complications. I know nothing about that cancer, except you indicate it is related to the liver. Presumably you've caught it very early, given the Pet scan.

[LeoPa]

What are they going to do with that cancer? Remove part of the liver? It is the only organ that can regrow. So a partial removal would be manageable as far as I understand. Good luck with your treatment.

[studebaker]

Never heard of CLL and Neuroendocrine cancer combination, but my son had Neuroendocrine cancer of appendix 7 years ago and after removing his appendix and partial colon excision he is doing very well

What treatment did they suggest for you and is any other specialist involved with your treatment and what did they suggest for you?

Best of luck 🤞🏻

Dana

[cllady01 Former Volunteer]

aboylan, so sorry to read of your having to deal with multiple cancer developments. It is a testament to your stamina to have you engaging with us with all you have been and are dealing with.

The following Mayo site does not mention Liver specifically, but does say the

Neuro-endrocrine tumors can appear other than the places listed as "common".

I do hope the discovery of the liver tumor is in a very early stage and it can be removed with no more involvement. And, best wishes for your introduction to Gazyva. I hope all will go well for your O + V treatment of CLL.

Please keep us updated as you are able.

mayoclinic.org/diseases-con...

[Mcpill]

So sorry to hear this news. I am currently MRD with my 17p del CLL, diagnosed 2014, and treated first with Imbruvica and then Venclexta. I stopped treatment in Jan 2021 and have been MRD since. In March 2021 I was diagnosed with neuroendocrine pancreatic cancer, and in June I had a splenectomy and distal pancreatectomy . the surgeon also removed 25 lymph nodes. At the time everything seemed to point to a cure. Unfortunately two months later scans revealed the Neuroendocrine cancer had spread to my liver. Neuroendocrine cancers can be very aggressive (depends on type so make sure you have a good oncologist) and spread to many areas. They are difficult to remove with surgery because you cannot keep taking pievces of your liver as they spread. I had 6 months of chemo ( Capecitabin and temzolomide) but they did not shrink the tumors. The Doctors felt that with the CLL history the drugs were too risky to constinue. I recently had a "Bland embolization" of my right liver lobe, and I will soon have another for the left side. 2-3 hour surgery which was no where near as difficult as the pancreas etc. Just praying that this works and keeps keeps the cancer from growing. I also receive lanreotide shots every month which is a good treatment for neuroendocrine tumors.Wishing you all the best! Please message me if you would like,

[Here2Learn]

Hi, Aboylan. I’d be very curious to see how ur liver cancer responds to Venetoclax. This med seems to fit the profile of a universal cancer tx- even at safe below standard doses for a relatively short course in therapy. My CLL has been helped by it & a skin cancer I had seem to clear up & not ever return in the process too - the suggested surgical removal of it I got to avoid. Thx, Here2Learn