Hep C...Liver Cancer...Transplant

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envirochick
New Member


Date Joined Aug 2007
Total Posts : 4
   Posted 8/2/2007 2:17 PM (GMT -7)   
Hi, this is my first post on this board.  I'm writing for my mom.  She was diagnosed in 1999 with Hep C.  We estimate she contracted the virus about 1970 when she received a tranfusion.  In 2001 she went on Interferon combo therapy and cleared the virus for a short time, then it returned.  Last August she wanted to go back on treatment and the Hepatologist wanted some routine blood tests and a CAT prior to treatment.  They found 3 small cancerous tumors on her liver.  Our local doctors told me to take her home (palliative care, there was nothing they could do for her).  We searched around, sent blood tests and CAT films to various places around the US.  UPMC urged us to bring her in, they believed they could help her.  Currently she goes through Chemoembolization every 2 months to keep "her window open", went through the TP evaluation,  and was put on the transplant list in June.  I'm moving her to Pitt in a couple of weeks.
 
Of course, we're all very frightened.  She's 72 and in good health otherwise.  She's always been a fighter and very strong willed.   
 
Her biggest concern isn't actually the operation, it's the pain after tp.  Can anyone share their post tp experiences?  Especially if there are some folks who went through this later in life?
 
Thanks,
 
Stephanie

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/2/2007 8:35 PM (GMT -7)   
I just wanted to welcome you to healingwell. Wow that's great that they put your mom on the transplant list. My husband past away about 3 months ago due to liver cancer. Right before he died his cancer doctor got him approved for a new cancer drug called Nexavar. It had already been approved for kidney cancer and they had just stopped the trials early for the liver cancer because it did so well. He was supposed to get the first shipment the day he died. God must have had a reason. What I had wanted to tell you is that my husband had one chemoebulization and it really did a number on him. But they didn't give him another one when they were suppose to. There are folks on this forum who have had transplants or caregivers of a transplant patient which are doing very well. But I don't think that they are your mom's age. I met a young women less than 2 weeks after she had a transplant. She came to group meeting. She looked good but she was holding a pillow against her abdomin and walking real slow. She said that it was worth the pain cause it wasn't going to last too long. All the transplant patients at that meeting were really glad that they had gotten the transplant. Hope your mom's wait isn't too long. Take care........Pink Grandma

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/3/2007 10:12 AM (GMT -7)   
Hi, Stephanie and welcome! It's great that your mom got on the transplant list. I was diagnosed with hep C in '93, but couldn't tolerate the interferon (which is all they had at the time.) Aside from terrible fatigue, I was okay until 2 1/2 years ago when I was found to have an enormous liver tumor, which had metastasized to the inferior vena cava...and it was considered inoperable at that point. I didn't qualify for a transplant because of the metastasis, and because my liver function remained fairly good. By then, I was being seen at Mayo. They did one chemoembolization and one treatment of a new drug, Therasphere, that was part of a study. Between the two, the tumor was killed and the part that had metastasized shrank back into the original tumor and was killed. I then had surgery in May of this year, by a Mayo doc, to remove the entire right lobe of my liver, as well as my gall bladder. I won't lie--it was rough the first few days, even though I was given the pump and injections of morphine. Thankfully, the pain became less each day. I was able to go home on the 8th day.  BTW, I am 64 and live alone.

It wasn't a transplant, but close to it. I am followed at the Mayo Transplant Center, and still being seen there frequently for blood work and medication control. I retained a lot of fluid (ascites) and was placed on Lasix and Aldactone. I lost 10 lbs. within a few days. However, we've had some trouble controlling my potassium. Therefore, they keep changing medication dosage.

My experience is that the docs will keep you as comfortable as possible, but there is some post-pain. It's well worth it, though, to be rid of the cancer. Of course, I still have hep C. I know that they won't allow me to try treatment until I'm 6 mos. post op. I also developed a hernia at one of the incision sites. I have to wait until I am fully healed from the liver surgery before the surgeon will repair it.

Good luck to your mom! I hope you will post again and let us know of her progress.

Connie

Post Edited (hep93) : 8/3/2007 11:15:54 AM (GMT-6)


envirochick
New Member


Date Joined Aug 2007
Total Posts : 4
   Posted 8/3/2007 10:25 AM (GMT -7)   
Sorry to hear about your husband's passing Pink.  I hope he's in a better place.  Thank you for your support with regard to my mom.
 
UPMC, unlike other liver transplant centers doesn't use age as an exclusion for a transplant, provided your meet the criteria and pass the evaluation and the team feels you are a worthwhile candidate (considering the underabundance of livers available).  With that said it has been nearly impossible to find someone to chat with about this subject that is over 65.  We do hope for the best and put our faith in the doctors and g-d.
 
about chemoembolization; mom had it done at two different facilitites.  Once in a fairly local hospital and four times at UPMC.  I can't stress enough how different the procedures, techniques and outcomes were.  After the first UPMC chemo, mom swore they didn't do anything to her because she felt go great compared to the time before.  The doctors were chuckling about it.  They simply had done more procedures, knew up-to-date techniques and even used different types of chemicals with fewer side effects.  We really learned that all cancer centers are not the same and that some doctors truly are more progressive than others.  
 
I know we'll continue to learn as this journey rolls on...

envirochick
New Member


Date Joined Aug 2007
Total Posts : 4
   Posted 8/3/2007 10:46 AM (GMT -7)   
Hey Connie;
 
Now that is a wonderful success story to hear! 
 
The fact they can shrink back tumors and metastasized tumors to the point where you're able to have a resection gives hope to so many others.  Mom has had good results with the chemo; she also shows very good tumor necrosis; Therasphere is also an option for her if need be.  
 
I appreciate your candor regarding the pain.  You stated you had your resection in May. Do you still have pain?  I am a firm believer in the patient being truthfully informed about all aspects of a procedure.  Whatever information I glean from these boards and from peple such as yourself, I give straight back to mom with no candy coating.   
 
Because Pitt is 1500 miles from where we live, I've rented her an apartment for a year, so she can stay close to the hospital while going for post-op care.  You stated you live alone...did you have a caregiver after the surgery?  One of Pitt's requirements is that mom have full time-24 hour care for the first month after tp.
Her husband will be with her (she remarried at 69, about 5 years after my dad died), but I'll hire a nurse also. 

Post Edited (envirochick) : 8/3/2007 11:49:04 AM (GMT-6)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/5/2007 12:37 PM (GMT -7)   
Hi, Envirochick! No, I don't have post-op pain at this point...just some tenderness, if I happen to lean against something with my incision site. The hernia is at the vertical incision in my midriff. It's a little tender around that area.

Since I have artificial hips, with the left one having a revision and then a reconstruction last Sept. (Mayo surgeon again), I am always in some pain, but Lortab takes care of it.

The medical team had said I would need full time care at home for a month, but when I told them I had help set up for anything I needed at home--laundry, grocery shopping, housekeeping, help with bathing if needed--they were satisfied with that. With the hip surgery, I went to a Skilled Nursing Facility for a month after hospital discharge, but I was much more mobile with the liver surgery and doing well enough that I didn't need to go there.

I still have the help, which is really great, though I honestly need to cut back on some of it as it's getting too expensive. :o

Connie

envirochick
New Member


Date Joined Aug 2007
Total Posts : 4
   Posted 8/6/2007 3:48 PM (GMT -7)   

Hey Connie:

My vote is for you to keep the domestic help.  You deserve it after all you've been through!  Hips too, wow, you're a strong lady.  Thanks for divulging parts of your journey for me.  It's been quite helpful.  Take care.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/6/2007 9:11 PM (GMT -7)   
Thanks, Envirochick! It was rough there for a while, dealing with 2 major problems at the same time. I've just cut the cleaning lady from every week to every two weeks. I think that will work out okay, and save me a little money.

I have an appt. with the "big cheese" of Mayo hepatology tomorrow. Will post again after our meeting.

Connie
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