CLL and Hep C

[Tumbleweed]

My husband is 57, has CLL (Chronic Lymphocytic Leukemia) and HepC from IV drug use in the 60's.  His gastro does not want to try to treat the Hep C, says it's more important to deal with the CLL.  A yr. ago, they removed his spleen due to a platlet count of 4.  Had a minor sinus surgery (2 wks. ago) and due to no clotting factor he almost bled to death.  The protein in his blood draining to his stomach made his amonnia level go to 178. He spent 14 days in CCU but is home now with an amonnnia level of 40.

He's exhausted but can't sleep.  His gastro says he can have 10 mg. of Elavil and 15 of Remeron.  Our Oncologist won't prescribe any Ambien although he had been on it prior to surgery.

Can you give me any suggestions or tell me where to find info?

We live in OKC, OK and use St. Anthony's Hospital.

Thanks.

[odessit]

Please note that we only get 4-6 threads a day. If you have any questions/comments, post them in one thread.

Thanks!

[nurse12hr]

As this is a patient to patient support group, there probably isn't a lot we can tell you.  It sounds like he is really struggling with severe health issues--you have my prayers.



There is a GI-PA who reads/posts here, maybe she can give you some ideas, but his issues sound really complex.



I hope he does well.

[hortbob]

Tumbleweed,



I don't know anything about CLL other than it is a disease of the bone marrow.  I have Myelodysplasia (MDS) a disease of the bone marrow and Hep C from transfusions in the early 70's for by bone marrow problem.  This may not apply to your husband at all but I will share it with you.  

My hemo and gastro agreed to treat my Hep C and I tried the the peginterferon with the ribavirin.  I did the 3 months spending a great deal of time at the hospital being transfused.  I was transfused with over 60 units of red cells and platelets.  The treatment had no effect on the Hep C.  However, what we hoped would be a temporary decrease in my already diseased bone marrow has not been so temporary.  In fact, I'm now looking for a bone marrow donor for a transplant.



I had stage 2 (on a scale of 1 to 4) liver disease when I tried the treatment.  Those of us with both Hep C and any type of bone marrow disease have double trouble.  In trying to the treat one disease we are almost certainly setting the other disease back.  My doctor's greatest concern for my bone marrow transplant is liver failure from the chemo and radiation required for the transplant.



Your husband may be best to wait for new Hep C treatments.  I hope I'm still around to try them when they are developed.



Best of luck to your husband,



Bob

[wife43]

Has anyone tried the new drup treanda or generic bundamustine?