Treatment on Harvoni

I've had blips seen on both kidneys. Nothing has come of them over the years. It's always a little scary when the docs tell you something like that. All you can do is wait and see. My docs have fixed everything so far.

The term used was "a growth," but they kept an eye on it. Didn't grow and is still there. The other one (left kidney) shrank and is still there, too.

I worried about them until the third MRI and they told me it was nothing.

Thanks ppm guy for the info. I have 6 more days of Harvoni. I have had a few side effects with the medication. Severe constipation; non stop tired and/or sleepy; several nightmares, vivid, in technicolor; energy level higher in the evening; sporadic hunger for food. Otherwise, the treatment went smoothly.

To those who have kept up with my journey. A tumor was found on the end of my right kidney. 80% chance that it is malignant. My urologist is going to do the robotic surgery to remove the tumor, trying to leave the rest of my kidney. He stated it is good the tumor is on the end and not deep into the kidney. He said two reasons he will have to remove the entire kidney: uncontrolled bleeding; if the cancer has spread deeper into the kidney. They have ordered a CT scan of my chest to see if it has spread. I am nervous about this. The urologist said that he thinks the tumor is the primary source and not from another site. So why the CT scan of my chest? I will have to have a platelet transfusion prior to surgery for low platelets (59,000).

I thought I had enough stress dealing with the Hep C. Now I am mortified that I have metastatic cancer. I am trying my best to keep a positive attitude but am finding it difficult at this time. With Kidney cancer you have a fighting chance....but lung or bone cancer....poor prognosis. I am asking for some input, suggestions, and sound advice.

For those of you who have just started treatment, you will be surprised how easy it is. Don't put it off, the longer you do, the more damage to your liver.

Hugs
Mitzi

Mitzi,

The CT scan of the chest is to determine if the cancer, if it is cancer, has spread to the lungs. I recently posted my story, was diagnosed with stage IV melanoma last August. Primary tumor unknown. A cancer that when I was diagnosed had a very poor prognosis. A week later Keytruda was approved by the FDA, because of my liver damage I was approved to take it first line and happen to be one of the 24% to fully respond. A PET scan last Friday shows the tumors are gone, the one in my right breast was the size of an egg.

Unfortunately my liver disease did not give me any immunity against cancer. But it has all worked out remarkably well. From the outset when I was diagnosed I was pretty clear that my only power in the situation was to handle it well. It was the hand I had been dealt and no angst on my part was going to change it. So I played the cards as best I could and have learned a lot along the way.

I hope it works out well for you - in my experience it certainly can. I think of the 80% likelihood and my thought is you have a one in five shot it is not cancer. I will keep my fingers crossed for you.
Hang in there,

Barbara

I can't believe it has been this long since I have posted. I am a bad HW member these days. I will jump in with my newest obstacle....

After treatment with Harvoni that was completed in May, it was time to deal with the tumor they found on my right kidney by CT scan. I did find out it is a 99.9% chance of tumor being malignant. I was scheduled for surgery Friday (today) at 7:30 a.m. Thursday morning I had a platelet transfusion. As of Wednesday, my platelets were at 70,000. After transfusion of 2 units, they only came up to 81,000. Not good. My hematologist and urologist canceled the surgery. My urologist requires my platelets to be at least 150,000 for surgery. I have been through hell the past month getting everything set up. I do feel it was the right decision to reschedule with a new plan. What I am so livid about is my gastro is not involved at all in this.

There has to be a way to get my platelets up to 150,000. My hematologist stated that platelets normally last 72 hours, but mine are lasting much less.

Do I need a hepatologist to be involved with this surgery? And any good advice concerning the above would be greatly appreciated.

A warm hello and big hug to my warriors who have always been there for me. I am ashamed for neglecting HW forum.

Hi mitzi,

I'm sorry this whole mess is going on.

Mike had terrible platelet problems and he hematologist approved him for some surgery BUT, they gave him the platelets 1/2 hour before the surgery....not waiting to see what they were the next day or anything.

But no "civilian" can be in on this drama.

I will say that Mike, who is post TP, post HCC, post HCV, post 3 rotator cuff surgeries and 2 large incisional herna repairs and aortic valve replacement is FINALLY with normal platelets. For a long long time he did not. He needed a prostate procedure at one point, for a benign enlarged prostate...but the hemo said NO NO NO NO. Since it was not cancer, they didn't do it. But with cancer I know they would have any way.

If you are not confident in your doc, get a second opinion. If you ARE confident, assure yourself tht this is the right path and try to relax.

I know, hard to do.

Hugs,,
Mama Lama

mitzi, I am not sure this is helpful, but here goes.

Themister needed an emergency surgery while he was treating with interferon/riba. (Stage 4 cirrhosis). His platelets run around 75-79 for several years now, but while treating (2011)they were down in the 30-40's. They admitted him, infused platelets, and then did the surgery. I don't know what happened during surgery, but he was given rescue drugs and some transfusions post surgery.

I understand your frustration regarding not having your GI engaged. Maybe you can schedule a consult/phone consult with your GI/hepa, in advance of Aug 21. Peace of mind is important when going through these things. Big Hugs

The battle continues... My hematologist has had me taking very high dose of predisone to see if he can get my platelets elevated to 100,000 to get this tumor out of my kidney. I amt taking 80mg a day, and off the wall with the jitters, agitation. He told me today that I need to go to Shands because my urologist is now seeing this as a real liability. He wants my platelets to be 150,000. The platelet transfusions will not last long enough. My spleen is enlarged and eating them up quickly, less than three days.

To make matters worse, I saw my Gastro this morning. He stated he wants no involvement, that I should have had surgery over three months ago. He said he cured me of the Hep C, never mind the cirrhosis that is causing the low platelets.

I need some help from some of you out there. Does anyone know if Shands, in Gainesville has a good Hepatology Department? I will be going to see a Hematologist that specializes in platelets. Will probably have a bone marrow biopsy also.

I was told today that I am at very high risk for the surgery. Fighting for my life right now. Post Note: I just had my three month viral load done on the Hep C. Still undetected. SVR?

I will appreciate any advice you can give me. I also think I have mild portal hypertension. Hope you are all hanging in there and fighting the dragon.
Big Hug,
Mitzi

We are in FL, at Jackson in Miami for every thing.

We do not know about Shands for liver, but they are totally the GO TO place for cancer treatment. It is where I would go for ANY cancer situation, at least for a second opinion.

I think you are going to the right place.

Let us hear how this drama unfolds.

I am not a liver patient, but am "mid scare" with a diagnosis and will move from local GI to Miami or Shands depending on what they find on biopsy of enlarging "something" in my pancreas. I won't fool around with the local guys for 5 minutes if my biposy shows cancer! For now I am on vacation and have my biopsy when I get back. My bloods were done before vaca and my cancer markers were NOT elevated, so my doc let me come.

I am hoping you get some resolution this week.

I'm with you...get that darn thing OUT if possible.

With Mike, who I mentioned a few posts back, the hema had 2 demands....the platelet transfusion right before the surgery, and NO surgi center procedures. She wanted him IN a hospital even though the insruance companies like surgi centers...she wanted him close to emergency intervention if something went wrong...that carried over to shoulder surgeries.

Boy we had a battle with the insurance company but our docs are spoiling for a good fight!!!! Thank goodness.

Hugs, Mama Lama

Greetings from Gainesville, Florida. I wanted to post to let those of you who are familiar with my plight, what has transpired. It has taken me this long to get an appointment with the hepatologist and hematologist.

I came up here from Titusville by myself(mistake), thinking this was going to accomplish a plan to get this tumor out of my kidney. Not the case.

The hepatologist did not have a current hepatic panel bloodwork when he told me this today. My labs were drawn after my appointment. My ct scan from last week showed a trace amount of ascities. My platelets are at 79,000. The nurse practitioner I saw before seeing him today had ordered a fibroscan, endoscopy, and colonoscopy. The doctor told me I did not need a fibroscan or liver biopsy. I was a Child- Pugh class B. He stated that I had maybe 2 to 3 years to live, that I was end stage cirrhosis, with a 50% chance of complications within a year. He based this on the ascities. A trace amount??? He stated that if I had the tumor removed, it would be five years before I could be cleared to be put on the waiting list for a transplant. He said basically that I was darned if I do, and darned if I don't. I asked him which was going to kill me first. He said, "Your liver."

He was abrupt and blew me away. I was not prepared for this news. I was under the impression I was maybe stage 2 cirrhosis. I am sitting here, in shock, thinking, do I need to get a second opinion on this death sentence.

My stomach is not distended at all. I have no confusion. The cat scan said normal size liver that continues to demonstrate minimal lobularity suggesting the possibility of cirrhosis. No discrete hepatic mass is noted, no intrahepatic ductal dialation. In addition, my viral load continues to be undetected after Harvoni treatment.

Sorry, but I am angry. I have yelled from the mountains, being told that I am not to the point of needing a transplant. Now I am being told I am not eligible and my liver is broken because of the ascities. Do you have any input, advice, suggestions that may help. I mean, he left me with no hope. I feel like I don't have enough information. Meanwhile, I see a lot of people with distended stomachs, walking around fine.

Thanks for reading and sorry it has been three months since I posted. David....Ziffle..Mama Lama..the miz...are y'all doing okay? I think about Connie every day. She was a fighter. I'm one, too. Just don't know what to do now.
Big hugs,
Mitzi

hi Mitzi,
so sorry about this mess. you cleared the virus(congrats).

I had cirrhosis when i cleared the virus. My hepatologist ordered tests to determine which way my liver was going. the liver can regenerate with compensated cirrhosis. worth a try.

Is your other kidney full function??

best to you
barry

good news. ml

Merry Christmas and Happy New Year, everyone!
I have been going through major changes since going to Shands in Gainesville. I messaged my hepatologist after seeing my lab results. I asked him to reconsider doing a fibroscan. He replied a fibroscan is not needed as we know I have cirrhosis. Really?

I have waited three years to see a hepatologist, and to get definitive results as to what stage I am in. My bloodmarkers were good. Can anyone tell me if there is a trace amount of ascities, does this indicate I am at the end of cirrhosis? Question#1

I did my Meld na score, it was a 7, an 8 with Meld Score.
I calculated my Child Pugh score. It was Class A.
The hepatologist came in the room, stated my meld score was 26 and my Child Pugh was Class B. I want to interject that he had not gotten my lab results back because I didn't have them done until after our appointment. Also,I used the conversion calculators on the bilirubin and creatinine. My son double checked and came up with same results I did. Can someone do my scores if I provide bloodmarkers? Question#2

So here I sit, not knowing where I stand, still. I am proactive, with a low trust level in doctors. Only because I have been told so many different things. Can someone give me some input or advice?

I had my last viral load done in September, 5 months POST
EOT. Still undetectable. Been positive since 1998, showing undetectable until April of 2014, enabling me to get treatment. Too bad it had already destroyed my liver. Never been a drinker so it was the hep c. Just feeling down with no answers.
Pouty hugs
Mitzi
Shout out to David, Ziffle, Mamalama, Barry....