Treatment on Harvoni

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**David**
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Date Joined Nov 2009
Total Posts : 3708
   Posted 4/7/2015 9:07 PM (GMT -6)   
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.
nullum beneficium impunitum...

mitzi22
Regular Member


Date Joined May 2011
Total Posts : 197
   Posted 4/10/2015 9:25 PM (GMT -6)   
Okay, David, please explain, 'blip' to me. Are you talking about a lesion being a blip?

I have found several discrepancies in my diagnostic tests. My ct scan said nothing about the polyp in my gall bladder as the ultrasound did. Nothing said about the two ovaries I have in any test; mentioned in a two year old ultrasound the presence of one normal kidney, said nothing about the other one. Yes, this has caused me to have a low trust level and scaring me. Where are my ovaries, did they shrink up and vanish?

If this is a blip, I will be one happy person. I am one that would rather know what I am up against instead of being in a state of denial. Here is a good example. I went to my PCP today. Have been having pain for three weeks in my left lower shoulder blade that is consistent. My PCP, who is an ARNP told me should would order an xray, that it probably wasn't my enlarged spleen radiating to the back, but my lungs. Then she asked if I was ready to face the possibility of something else being found. Are you kidding me? I replied that not having it done is not going to make it magically go away if there is something going wrong. I am learning the medical issues aren't as difficult to deal with as the medical profession staying on point and knowing that our life is as important to us as theirs is to them.

So, share the blip with me....
Hug
Mitzi
“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.” Mary Anne Radmacher

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 4/10/2015 9:37 PM (GMT -6)   
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.
nullum beneficium impunitum...

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1074
   Posted 4/10/2015 10:27 PM (GMT -6)   
Hi, about your hip.

I fell a couple years ago, also on my right hip. Nothing showed on Xray or mri. After 3 months of bad pain. Ask your dr to check ishial tuberosity. The little round bones at the bottom of your hip. Also called sitz bone.try googling ishial tuberosity and bursa sac. Check all 5 bursas

I say this because your areas of pain; sacrum, hip, groin all attach on the tuberosity. Worth a try
Barry

mitzi22
Regular Member


Date Joined May 2011
Total Posts : 197
   Posted 4/27/2015 1:03 AM (GMT -6)   
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
“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.” Mary Anne Radmacher

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 4/27/2015 1:33 PM (GMT -6)   
Hi Mitzi....I am glad you finished treatment. Let's hope that is behind you.

When is your surgery scheduled, and when will you know the results of the CT scan? Please know we are with you as you go through this.

I wish I knew more about what you face, but I don't. I don't like the sound of it, and hope for the best for you.

I hate these blips/cysts/lesion things. For my guy, he has a right, renal cyst. Also side branch IPMN, cystic pancreatic lesions, and stable hepatic cyst. This is as of the last MRI. Also had a cyst in his neck that came on with interferon/riba treatment. Kinda freaks us out when we read the reports each time. He gets an MRI routinely, and the doctors "watch them".

I will continue to hold out only good thoughts as you walk through this latest health scare. There is a Healing Well kidney disease forum that may have some with good insight, as well.

Let us support you through this. We care. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

imbb
Regular Member


Date Joined Apr 2015
Total Posts : 65
   Posted 4/27/2015 7:07 PM (GMT -6)   
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

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 4/27/2015 9:32 PM (GMT -6)   
From your post, it sounds as if they have yet to biopsy the tumor on your kidney. An 80% chance of malignancy means there's a 20% chance of it being benign. Don't worry 'til it's time to worry. Besides, if it is malignant, and hasn't metastasized that can be solved, too.
nullum beneficium impunitum...

mitzi22
Regular Member


Date Joined May 2011
Total Posts : 197
   Posted 7/16/2015 10:24 PM (GMT -6)   
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.

mitzi22
Regular Member


Date Joined May 2011
Total Posts : 197
   Posted 7/16/2015 10:46 PM (GMT -6)   
Sorry Y'all, I am coming down from total anxiety.
post note to above post 11:24 pm

CT Scan of chest is clear of masses in lungs and bone.
Bilateral Hypoechoic nodules on Thyroid
Small amount of ascites around liver
“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.” Mary Anne Radmacher

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4786
   Posted 7/17/2015 9:14 PM (GMT -6)   
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
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

mitzi22
Regular Member


Date Joined May 2011
Total Posts : 197
   Posted 7/19/2015 12:44 AM (GMT -6)   
Thanks, MamaLama,

What you didn't mention concerning Mike, does he have cirrhosis? I have been told that my platelets will never go up again having cirrhosis. Now that the virus is gone, they may stay the same. This is frightful to me as it paints a blank picture. You also didn't mention how low his platelets were.

This is probably what they will do this next time, give me the platelets right before, and possibly during the surgery. It was a total nightmare because my hematologist was on vacation.

Again I am asking if my gastro should have been involved because of my liver and spleen. I am very confident in my urologist that is doing the surgery. I just don't have enough definitive information about the risks involved and how stable my liver is at this time.

They have rescheduled my surgery for August 21st. This next go around will be handled differently, I assure you.

If any of you have any suggestions or advice, I welcome your input. I hope all of you are doing well. I am taking each day at a time. That's all any of us can do. It just seems surreal sometimes.

Big Hug
Mitzi
“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.” Mary Anne Radmacher

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 7/19/2015 1:00 PM (GMT -6)   
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
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

mitzi22
Regular Member


Date Joined May 2011
Total Posts : 197
   Posted 7/19/2015 7:28 PM (GMT -6)   
Thanks, themiz,

I think that is the plan for the surgery this time around. I see my hematologist Tuesday and will know more. But he mentioned them giving me platelets before, possibly during, and after surgery. I will post again when I know more. I do have a call in place to my gastro to please call me. He is out of the country until Tuesday. I appreciate the input. It helps to calm my mind.
Hugs
Mitzi
“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.” Mary Anne Radmacher

mitzi22
Regular Member


Date Joined May 2011
Total Posts : 197
   Posted 8/12/2015 2:38 AM (GMT -6)   
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
“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.” Mary Anne Radmacher

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 8/12/2015 9:26 AM (GMT -6)   
I hoped by now you would be past the surgery, Mitzi. I am sorry about the pred jitters. They are awful. The good news is ...you eradicated the Hep C. Congrats!! Cure means the Hep C virus is not detected in the blood when measured three months after treatment is completed."

I don't know anything about the Florida hospitals or specialists. I hope others will pop in with first hand experience from FL. When do you go to Shands ? Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4786
   Posted 8/12/2015 9:37 AM (GMT -6)   
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
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

mitzi22
Regular Member


Date Joined May 2011
Total Posts : 197
   Posted 9/8/2015 3:42 PM (GMT -6)   
Hey Mama Lama and all,

Unfortunately, I have not had the opportunity to post too often. I manage a couples' home while they travel, and it is a lot. I stay an average of fourteen days a month at their home. It is a plus though; solitude, beautiful home, swimming pool. It keeps me active and helps with state of mind. Because of this I am limited to posting.

I have my first appointment at Shands next week on Friday, September 18, 2015. I will be seeing a specialist about the tumor in my right kidney. As you know, the platelet transfusions did not work, nor did the massive doses of steroids. Surgery was canceled twice. I am still taking the prednisone, tapered down to 40mg a day.

I am keeping a positive attitude and hoping they can perform the surgery. I am still undetected post tx, four months. I will keep y'all updated and wish everyone the best.

Hep C undetected post tx four months
enlarged spleen
mild portal hypertension
platelets at 62,000
tumor in right kidney

I am looking for hope that treatment does reverse cirrhosis.
Hugs
Mitzi
“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.” Mary Anne Radmacher

mitzi22
Regular Member


Date Joined May 2011
Total Posts : 197
   Posted 12/17/2015 11:58 PM (GMT -6)   
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
“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.” Mary Anne Radmacher

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 12/18/2015 9:53 AM (GMT -6)   
I would get some more opinions at this point. Maybe try another hospital. You need to find a doc that is willing to try treatment for both your liver and kidney problems.

Don't give in to bad news from one source. Stay positive and keep searching for a doc that has other ideas to help you. Be well. Please keep us informed of how you're doing.
nullum beneficium impunitum...

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1074
   Posted 12/18/2015 12:28 PM (GMT -6)   
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

mitzi22
Regular Member


Date Joined May 2011
Total Posts : 197
   Posted 12/18/2015 12:41 PM (GMT -6)   
Thanks to both David and ppm guy. I have both kidneys, fully functioning. The hep Dr stated I am decompensated because I have trace of iscities.

The Dr called me this morning, did a complete turn around. Stated the transplant team is willing to consider putting me on list but I have to have tumor removed.
Go figure.Maybe he got my labs back and decided I wasn't as bad off as he thought. I sent him a message stating I want a fibroscan before I go any further.

Thanks David. You always come through.
Hugs
Mitzi

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4786
   Posted 12/18/2015 12:44 PM (GMT -6)   
good news. ml
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 12/18/2015 3:55 PM (GMT -6)   
Sounds good! I'm happy to hear your doc had a change of heart. Stay strong.
nullum beneficium impunitum...

mitzi22
Regular Member


Date Joined May 2011
Total Posts : 197
   Posted 12/31/2015 11:45 AM (GMT -6)   
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....
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