CLL with LIVER Infiltration

[ezabella]

Hi members

I am worried as my Haematologist informed me yesterday that my CLL is spreading into my liver in a central spot of liver, it's rare condition, he is monitoring closely every 2 months my Liver function Test and CT scan twice a year. I couldn't enjoy W&W and am constantly worried feeling unlucky that my liver is at risk since beginning of diagnosis, but he expect it will be stable for a number of years before it become serious. Other blood counts still reasonable, diagnoised at the start of 2016. I feel alright today but worried about the future what is gonna happen to my liver?! as my DR said the surgery is not an option we can't cut a part of liver but there are many treatment options it will be a combination of chemo and tablets as he said. It's very scary. Has any one went through similar condition? Please write to me. Thank you

Ezabelle

[Cllcanada Top Poster CURE Hero]

I would resquest a consultation with a Hepatologist, prior to any treatment...

Having a liver specialist review your case might open more treatment options...

~chris

[ezabella in reply to Cllcanada]

Thank you Chris for your reply. I will discuss next appointment seeing a hepatologist. I recently transferred my treatment to Peter McCallum Cancer Center and my Haematologist is a well known Prof. I feel I am in good hands, time of treatment depends on results of next blood test in July. If my liver functions deteriorates a decision will be made for treatment. I think you are right it would be good to have opinion of a hepatologist.

Cheers

Ezabelle

[Cllcanada Top Poster CURE Hero in reply to ezabella]

Oh good move... you are in great hands with Dr. Tam and his team... still a specialist liver opinion wouldn't hurt...

~chris

[ezabella in reply to Cllcanada]

I will share any results after my next appointment in Sept. My doc may see me in July only if liver functio test indicates need for treatment, hopefully he will not contact me in July, I can't not to worry till July. I feel I have 2 as if I have 2 diseases (CLL + LIVER).

[Psmithuk in reply to ezabella]

I feel like that, too. Seems very unfair, as CLL is more than enough for us. I'm recovering from a heart attack and feel quite resentful! However it doesn't help, so I'm trying hard to be sensible. I hope all goes well for you.

[ezabella in reply to Psmithuk]

Thank you Chrisgranny, my warm wishes to you as well. Ezabella

[Fwankie]

Try milk thistle I drink a lot of alcohol and every time my bloods are done I get good results. I also take B, C and other vitamins.

[ezabella in reply to Fwankie]

Hi Fwankie thanks for your advice. I am taking Vitman D and healthy diet more veggies fruits and minimal amount of red meat, will try milk thistle as I heard its good for liver. I feel excited when receiving reply from our forum, very supportive kind members.

Cheers

Ezabelle

[Hidden in reply to Fwankie]

I take Imbruvica and was also taking milk thistle and I found that the milk thistle was interferring in some way with the Imbruvica because both are filtered (not the right word) through the liver. Once I stopped taking the milk thistle my scores improved on liver function. Just a thought for you.

[LoganS]

I am surprised your primary doc said you can't cut your liver. It is done everyday. I saw a video showing a father donate half his liver to his son. And the father and son grew full size livers in 24 months.

[ezabella in reply to LoganS]

In my case because the CLL is spreading in a central spot in my liver, surgery is not the right option because it is caused by the blood cancer which circulate through all body and organs. So it can be treated only by treating the CLL, it has been two years the Cll is filling in my liver, there is mild increase in two enzymes and 3 lesions of CLL in my liver, but its working normally so far in correlation with the progress of CLL. My Haematologist expects it will be stable for a number of years (I hope so) am scared to death, but there are many treatment options as I was told by Haem.

EEzabelle

[MsLockYourPosts Passed Volunteer]

My CLL presents in the kidneys - unusual. I have a great team - hematologist and nephrologist who make decisions about treatment together. I was treated when diagnosed - 2003 - I was quite ill by then and again in 2015 with Gazyva specifically for the kidneys in both cases. Definitely add a herpetologist to your team - one comfortable working with your hematologist.

[ezabella in reply to MsLockYourPosts]

Hi Pkenn. Did you had chemo in addition to the Gazyva? as my Haematologist informed me I will be treated with combination of chemo and tablets, and these lesions of cll in my liver will shrink. So far no treatment yet we are just monitoring liver every 2 months and CT scan every 6 months. I think my Haem may discussed my case with a liver specialist - I didn't ask him, but because I am treated at a cancer hospital he will probably discuss with liver spec. I will ask him at the next appointment. I think when CLL presents in liver it could be worse than being in any other organ, I find it scary.

Ezabella

[MsLockYourPosts Passed Volunteer]

I wish your original post was locked to community only - click on the v at the bottom of the post then edit and scroll to the bottom of the post to indicate community only. Both your post and any answers can show up on Google and other places. Many of us prefer to not have private information all over the web. I will send a PM.

[Sallyurnotal]

I was reading your post from 8 months ago. I have been diagnosed with liver and lung Lymphoma in organs. I was just wondering how you are doing. Any response greatly appreciated

[ezabella in reply to Sallyurnotal]

Hi Sally

I haven't been to this Forum for quite long time. Hopefully you're doing well. About myself, haven't had treatment yet, but I am seeing my specialist every 4 month, blood test every 2 months monitoring closely, and CT scan every 8 months. Things started to change; now my spleen also has CLL/SLL inflirted in addition to the liver, and my neck has a group of enlarged lmph nodes all of them on the left side, more also along the left shoulder (as if I got a large tree of many many grapes) filling all the left neck and shoulder. I feel the pain when sleeping, and can't carry my handbag on the left shoulder. By the way, am lefty speaking on mobile on left ear causes me awful headache and pain in the left ear through the nerve. I am worried I may need treatment suddenly I don't know when. The liver & spleen are slightly enlarged causing constant pain. But I don't feel I really need treatment soon.

Ezabella

[ezabella]

So far I am on w & w, no treatment yet, but I get pain in and around liver, functions are mildly elevated and stable but expected to escalate over time which will trigger treatment. I have a combination of emotional and physical pain, sad always mainly over my liver.

I don't know what the future has for me.

Ezabella