HEP C AND CHRONIC LYMPHOCYTIC LEUKEMIA (CLL)??

[Sad Summer]

Hi.  In Nov i was diagnosed with CLL, with all of the tests they ran, they also found that i have Hep C, stage 2.  The Cancer doc says he can't treat the cll cuz chemo will fry my liver - the gi dr says the drugs used for hep c (interferon & ribo) could mess up my bone marrow, making my CLL worse...  So after extensive (so she says) reasearch by the GI dr, they cannot find ANY case studies of someone in my shoes!!  i know i can't be the ONLY one in the world with both?? Can I??  if anyone knows of someone please let me know - or if your dr does??  Or if you know of other forums i might check...  ANYTHING could help...  Thank you.

[mackydog21]

thank you for the info. My girlfriend was on this site and she saw the post and is gooing through the same thing. I am a moron on the computer but I wanted her to post something but not feeling well so I did. Won't do that again! Thanks man. I appreciated it

[dontworry_behappy1]

This is a very old thread.  You can try sending a personal message to "sad
summer".   As you can see Medhelp won't let you post email addresses.

Best to you

[mackydog21]

My name is Jim and I know exactly what you are going through. My girlfriend of 10 years found out on Dec. 2012 that she has CLL. after some more blood tests from the cancer doctors and the beginning of treatments for the CLL they informed us that she also had Hep-c. After watching these morons try and get blood or find a vein in her arm for up to an hour we decided to get a second opinion from a different doctor.Turns out she does have CLL and Hep-c.But now we feel that we have a competent doctor.The first doctor was planing to give her so many chemo treatments it probably would of  have killed her by now. The treatments for the CLL can not be aggressive because the cancer is in the T-cells which create your white cells.She was told by another doctor that they would not be able to treat the hep-c because it also affects the white cells. That much I do know. She has treatments once a week for four weeks every six months. The medication she is given is called Ritoxin. After reading the side effects we were skeptical but so far it seems to be keeping the cancer at bay.however we don't know what is going on with the Hep-c because she hasn't been able to find a doctor in our area that deals with hep-c until today. My girlfriend Marion doesn't have any real support except me and i am a moron when it comes to illness and said she would be happy to get together and talk with you since you are in the same situation. When I read your post I was shocked at what I read and it was exactly the same thing Marion is going through. You can reply if you could use a friend by email to Marion at   marion.***@****. Maybe it would help both of you get through this.

[bigbear0662]

hello my mother has been dealing with hep c for a few years. and just found out that she has CLL and the dr told her the same thing. that they cant do anything for her. so i cant help except i was hoping you could e-mail me with anything you find out that might help. and i could do the same. ***@****

[FloridaMouse]

I like Smaug contracted Hep C while being treated for AML only I got it from one of zillion blood or platelet transfusions.    It has been 25 years since I faught Leukemia.

Being that you have CLL, did they give you a game plan should you hit an acut blast crisis?

Mouse

[smaug48]

Echoing what some others have already said, having an oncologist and a hepatologist working together seems like the route to go, preferably at a large cancer research institution.

Here is link to the latest US News cancer hospital ratings:

usnews.com/directories/hospitals/index_html/specialty+ihqcanc

I got Hep C while getting a bone marrow transplant to treat AML decades ago, and am now txing for Hep C.  

Don't give up, you can beat both and get your life back.

smaug

[Rhino7777]

Hi
I'm in your shoes. I have CLL, Hep C and diabetes. Haven't treated the CLL or the Hep yet. I was diagnosed with Hep C 2 weeks ago. I'm a 50 year old woman. It *****, doesn't it? Although my CLL is indolent, I have been having a lot of joint pain, which is now explained by the Hep C. So off I go tommorrow for more tests. I'm just so sick of all this, but I never give up hope. You shouldn't either.

[xracer1]

I am currently in tx for Hep C. I go to an oncologist/hematologist who sees all my blood work because I have CLL. The onc/Hemo doc insists that I see him after every lab. He makes the call for my rescue drugs {Neupogen for neutropenia) He doesn't think that he will need to treat the CLL for some time. I would recommend a GI/Herpetologist Doc for the Hep and a Hematologist to watch the blood. Both my docs see no reason for me to not treat the hep and the hematologist is committed to me finishing tx for hep c.

[ThankfulSC]

My husband has the hep c antigen and Cll.  He had chemo a year and a half ago for the CLL after a painfully enlarged spleen attack. He still takes rituxan treatments every six months for the first two years.  He has two more rituxan treatments.  His liver enzymes went up a bit but his oncologist did not seem to be concerned.  His liver and spleen are both enlarged but all an all he has weathered the treatments beautifully.  He works every day and was never sick from the chemo!!  He took fludurabine and rituxan. My husband is 53, we have a stained glass company...he has a pretty demanding job when it comes to the crafting and installing of church windows.   I know each case is different but we feel very blessed and I thank God  each day that we have such a good Christian, compassionate and aggressive oncologist.  We are in Augusta, Ga.

[friole]

I would think this is a really tricky issue.  Is your lymph count already so high that you need to undergo treatment?  I have 2 friends with CLL -- one that was dx a couple of years ago and her lymph count is not so high yet that she needs to treat, and the other who treated last year.  During treatment for CLL her white blood counts dropped to almost nothing (under 1.00 and she had to cease treatment.  

I think you will need to be under the treatment of a hemotologist and oncologist for this one and, like Jim said, a knowledgeable hepatologist -- all working together.

If you are already at a stage that you need to be treated for the CLL than I believe that would take priority.  

My thoughts are with you.
Frijole

[lackalustre]

no im not a smoker and have been into natural foods/health most of my life!  i do have thyroid problems now as well.   with nodules/growths on my thyroid, too small to biopysy yet.    i think the interferon may have contributed.

[hippygem]

Are you a smoker?

[hippygem]

Hi there, sorry about that..lol...headfog..(sick of sayin brainfog), anyway here is the link, there are 34 articles here, the last search I did I omitted the 'chronic' word.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=pubmed

[lackalustre]

i  treated my hepc in 03 and cured - geno 2b.  treated 28 weeks.   BUT   i now have a bone marrow disorder called polycythemia.  i know how you feel in that no one else seems to have these things..  only 1 in 200,000 people for mine.   i produce too many red blood cells. so far my platelets have not sky rocketed like most with this.  but if my hct goes over 50 i have to have a phlebotomy, blood removed.  this high hct puts me at high risk for heart attack and stroke. not to mention myelofibrosis, hardening of the bone marrow that can be fatal/and or leukemia.   doctors dont seem to know all that much about this and im not even sure im being treated correctly.   this causes fatigue and headache.    i think i may have had it before i even start hepc treatment as i have had high hct for years.   finally saw a new dr. who picked it up and sent me to a hemetologist.     the pegasys/riba was very very hard for me to take and i wonder if it made this PV worse or more active.....
   because of my liver fibrosis i know i could not tolerate chemo or strong drugs  that would otherwise be used to treat my problems down the road.  i jsut take it one day at a time......

[Sad Summer]

Hippygem, i don't see a link on your message.

[hippygem]

I did a search in pubmed for studies done on this, here is the link to 89 articles

[jmjm530]

First of all, especially since your case is a bit complicated, I'd get a referral to a liver specialist (hepatologist) as opposed to having the situation evaluated by a GI. Hepatologists have much more experience treating Hep C, especially more complicated cases.

Here's a link to an  older article that might be helpful.
http://tinyurl.com/yrcrct

You can order up the article test online or visit a medical library. Your doctor should also have access to it. Another thought is to email the authors and ask if they've done any more research on this issue as well as eliciting their opinion on your situation.

All the best,

-- Jim

[MissMiss]

Oh, I am so sorry for what you are going thru.  I don't have much to add except that it was an MRI that showed abnormal bone marrow in my shoulder that led me to the dx of HCV.  I tx'd 48 weeks, at 6 mo post I was und and am now about 8-9 mo post tx.  The abnormal bone marrow worsened on tx but I am told it isn't anything to worry about.  At my age, 50's, the marrow in my shoulders shouldn't be yellow marrow but somehow it is.  IT is normal for developing children but not adults.  (I think I have that right) They say it isn't anything to worry about and may take several years to turn into normal marrow.  

I don't know how this may relate to what you are going thru but since I can't think of a single person here with anything similiar happening to them, I wanted to share this.  I always worried about Leukemia when I first got the abnormal bone marrow news but so far so good.  I will be very interested in how things pan out for you.  

A big hug and well wishes your way.

miss

[jmjm530]

First of all, especially since your case is a bit complicated, I'd get a referral to a liver specialist (hepatologist) as opposed to having the situation evaluated by a GI. Hepatologists have much more experience treating Hep C, especially more complicated cases.

Here's a link to an  older article that might be helpful.
http://tinyurl.com/yrcrct

You can order up the article test online or visit a medical library. Your doctor should also have access to it. Another thought is to email the authors and ask if they've done any more research on this issue as well as eliciting their opinion on your situation.

All the best,

-- Jim

[hommeworks]

I'm not in the exact same boat as you. My HCV triggered large 'B' cell lymphoma which is a non-hogdkins lympoma. This has to be treated with chemo. My case gets a little more complicated. I've been transplanted. So I face a myriad of complications with chemo.
Normal chemo treatment calls for a course of drugs with an acronym of 'CHOP'. I have been getting treatment with a course of drugs with an acronym of 'CNOP'. I don't know the exact difference other than CNOP is easier on patients with liver complications. At this point my CNOP treatment has caused organ rejection which can be dealt with. It has almost eliminated the cancer after 2 chemo treatments.
You may want to ask your oncologist about CNOP.