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Author Topic: My Mom is still so sick... 7 weeks post Sovaldi... need advice  (Read 24599 times)

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Offline bwelsh

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ugggh, hoping I can get some answers here or maybe others who have felt as bad as my Mom.

She is 80 years old.  Has had HepC for years.  Contracted it via a blood transfusion when she was 18.  Got diagnosed at 62.  She was treated years ago with the interferon, etc to keep it stable, it was fine.  Doctor suggested she do this Solvadi treatment this year, April 2014.  She started the treatment and her last dose was June 9th, 2014.

However, she is still so sick.  She is so fatigued, has zero energy, can barely get out of bed (it's been like this since the beginning of June). Now she has really bad nose bleeds.  The first one got treated a few weeks ago, not she's getting them again.  We have been to her hep doctor, and to her cancer (she is in remission for non hod lymphoma).  All tests show nothing.  Her latest appt she had a bone marrow to see if her cancer is back, we get the results Monday (8/4/14).  If that still shows no cancer return, then we're going back to her hep doctor to say what the heck?  Why is she so sick?  She has issues with her bowels, little poops, not regular bowel movements.

... and the kicker is, we don't even know if the Solvadi worked!!  I am at a loss (I am her daughter, 52yo) at what the numbers mean.  Is the doctor supposed to tell us if her hepc is completely gone?  I am so confused and scared... she is not getting better.

I wonder if it was stupid for the doc to do this... at 80yo?, She was feeling fine before... her hep was remaining stable... little cirrhosis... nothing terrible, she was certainly a lot better than she is now.  She has never been this sick.

I'm hoping maybe some other people have had similar side effects and I can get some answers...

Thanks.
« Last Edit: July 28, 2014, 05:25:52 pm by bwelsh »

Offline lporterrn

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #1 on: July 28, 2014, 05:45:14 pm »
I am so sorry, I am at a loss as to what to say. How confident were you that there was little cirrhosis - had you had a recent biopsy? Was she on interferon and ribavirin with the Sovaldi?
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Mike

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #2 on: July 28, 2014, 05:50:16 pm »
Sorry your mom isn't feeling better. What Hep-C medication was she taking?

Best wishes, Mike
« Last Edit: July 28, 2014, 06:07:18 pm by Mike »
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline bwelsh

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #3 on: July 28, 2014, 05:54:44 pm »
I am not sure what specific medication she was on, but I will find out tonight and post it, thanks! 

lporterrn, would the size of the cirrhosis have an impact on how the treatment is handled?, particular post treatment?  She wasn't doing too bad until the last 2 weeks of treatment... and it hasn't really seemed to get better.

... but I will get her exact medicine tonight... I will post more later, thank you!

Offline lporterrn

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #4 on: July 28, 2014, 07:10:56 pm »
If she didn't have cirrhosis, then looking for an unrelated cause makes sense. If she did, then although treatment would still be recommended, it might mean she had a complication.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline willie g

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #5 on: July 28, 2014, 08:00:56 pm »
BEWELSH, HANG IN THERE AND KEEP PRAYING WITH HER, I AM AS WELL AS OTHERS, YA LIKE LUCINDA SAID SHE MAY HAVE HAD A COMPLICATION OF SOMETHING DONE, JUST HAVE TO GET TO THE BOTTOM OF IT, I AM GLAD YOU ARE ON THIS SITE, IT REMINDS ME I HAVE NO REASON TO COMPLAIN TODAY,  YA KNOW SOMETIMES THE CREATOR PUTS US IN THE DESERT, AND AT THE TIME WE ASK  WHY? SOMETIMES THE ANSWERS COME AND SOMETIMES WE MAY NOT SEE THEM BUT I CAN SAY FROM MY OWN EXPERIANCES IN LIFE I HAVE BEEN IN THAT DESERT MANY TIMES AND JUST WHEN I WAS READY TO LOSE IT OR GIVE UP HE WAS THERE, WITH WATER IN HAND. SOMTIMES I HAVE BEEN LITERALY ON THE EDGE OF A CLIFF READY TO JUMP WHEN MIRACUOSLY SOME POWER OTHER THAN MINE PULLED ME BACK, CRIED WITH ME AND HELPED ME BACK TO MY FEET, PREPARING ME FOR ANOTHER DAY OF THIS THING CALLED ;LIFE; FAITH,DOING FOR OTHERS = A GOOD DAY,,  IM PRAYING RIGHT NOW FOR YOU! WILLIE G

Offline bwelsh

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #6 on: July 28, 2014, 08:59:11 pm »
Hello, my Mom is here with me now and here is the deal.  She was treated with interferon and ribavirin 15 years ago and it helped reduce the cirrhosis and apparently kept the virus at bay.  Her appointments following that treatment were always positive, the cirrhosis wasn't going any worse.

This year, April 2014, she started the Solvadi and Olysio... 2 pills each day for 12 weeks.  The first month was okay, she was fine... shopping, walking, driving, doing all her normal day activities.  As time went on, she became weaker and more tired.  About two weeks before the end of the treatment, she started to get really weak, and we thought it was the medicine and would go away once the treatment was complete.  We decided to hang in there, and see what happened.  Well nothing is getting better.

The treatment has now been complete since June 9th and she is no better.  She is so weak she can't even take a shower.  Her hepatitis doctor doesn't know why she is sick... so he referred her back to her cancer doctor who is 90% sure it's not the return of cancer... via tests.   Her last cancer test was the bone marrow and we will have the results of that on 8/4/14.  We don't think it's the return of any cancer. 

We think it's this drug.  Why is she still so sick?  What are my options?  Has anyone become this sick on the completion of Solvadi?

lporterrn, what complication are you referring to specifically?

Offline Mike

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #7 on: July 28, 2014, 11:00:20 pm »
Hi Bwelsh,

I've researched the new Hep-C treatments and haven't read anything that suggests Sovaldi causes this type of reaction after discontinued use. I'm not as versed in the effects of Oylsio; but everything I've read indicates that the S/O combination is very tolerable and the side effects wear off rather quickly once the drugs are discontinued. Ribvirin and Interferon are a little different and the side effects can linger 3-6 months after a 12 weeks course.

Your mother's doctor most likely ran the standard blood work during treatment (CBC, WBC, liver panel and so on). These tests are repeated at the end of treatment, as well as a quantitative viral load  which will tell you if the treatment reduced the virus to an undetectable level (worked).

The viral load test is repeated 12 weeks after treatment ends (which, for your mom will be in 5 weeks). If the virus is still undetectable at that time, your mother will be considered cured.

It sounds like your mom has had some other health concerns (cancer, cirrhosis) and her age may also be a contributing factor (she's 80). There may be some depression, which can also cause fatigue, lack of energy, loss of appetite and a general feeling of malaise (having Hep-C is no fun and neither is the treatment. The same for cirrhosis and being a cancer survivor). She may also have developed the flu during or after treatment.

Simply put, it may be a combination of factors, which can make it difficult for the doctors to pinpoint the exact cause and/or diagnosis.

The key is to communicate with the doctors (write down questions and ask if needed), and to understand the information they are providing. Second to that, is to make sure all the specialists are communicating with each other (don't assume they are). Be an advocate for your mother. Don't be afraid to ask the doctors to explain something you're not clear on. Get a 2nd opinion if your questions aren't getting answered.

Again, I'm sorry your mother is not feeling well. She sounds like a fighter - being a cancer survivor and a Hep-C battler - which is 90% of what is needed to heal from anything.

Best wishes, Mike

Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline lporterrn

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #8 on: July 29, 2014, 12:14:37 am »
Hi - Mike has made some excellent points. I have worked in this field for a long time and here is what I know:
1) Cirrhosis can go down hill quickly at any time, esp. with age. It could be coincidence that it went downhill around the same time she was on treatment
2) Although most people are flying through s/o treatment, there are always going to be exceptions. This will need to be pursued.

Hope you find answers quickly. Please let us know what the doc says. Also, keep copies of her labs so she/you can keep track of her status.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline bwelsh

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #9 on: July 29, 2014, 12:27:17 am »
I don't buy for a second that it's her cirrhosis ALL of the sudden?  A bit coincidental don't you think.

Yes (she's 80), I get that, however.. she is, or was, a very young 80 PRIOR to treatment.  She did what most 70 years don't do, walks miles, bikes, shopping, driving, now after treatment she can barely walk.

If anyone has experienced this side affects, I would appreciate you posting.  That's all I've got.

Offline lporterrn

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #10 on: July 29, 2014, 10:50:29 am »
Yes, all of a sudden is how it sometimes happens. It is a silent disease and 75% of the liver can be destroyed before it loses function. Sadly, I know 5 people this year alone who were functioning very well and then went downhill very quickly. This is what distresses me about those who waited for years for these new treatments but failed to see their doctors for regular monitoring. The new treatments came out, but they have cirrhosis. The meds may cure the virus, but they won't cure cirrhosis. 
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline bwelsh

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #11 on: July 29, 2014, 11:00:17 am »
well my mother didn't wait, she was fine before this treatment.

her doctor hasn't said her cirrhosis is worse.  her cat scans have come back solid, nothing new.

this was a stupid idea to come here... you aren't trying to help, you are simply trying to negate that fact that this drug has made her worse.

you are guessing.  Please don't tell me that 'all of the sudden', after taking Solvadi, my mother is 5% of what she was, that it's something other than this drug.

I'll find another forum where they try to help, rather than diagnose by GUESSING!.
« Last Edit: July 29, 2014, 11:07:04 am by bwelsh »

Offline rainbowray

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #12 on: July 29, 2014, 12:04:11 pm »
He bwelsh,
Sorry for the situation, It is very frustrating to see someone you love going thru
this. I don't know if I can help the situation, I just know by me having HepC for 43 years I have learned alot.
I do not see any lab posts here to go for reference, the most important is her Genotype. I saw that the rare Genotype 4 may have some issues with the S/O
combo. Do you have her labs, as other tests beside viral load, and ast/alt are important. You have not revealed any of the test results. I have found that just asking a Doctor and they say it is ok, but without getting the actual numbers is a mistake. Second opinions need the  actual numbers.
 What is her hemoglobin, hemocrit, red blood count, white blood count.
People seem to be guessing, but really do not have the numbers here. Is she anemic, that causes weakness.  In your first post you say you do not know if the Sovaldi worked.  After 3 months you should have the viral load results in your hand.

In this disease, I have learned to ask the questions, but research first so that I am
prepared on my side. I am in treatment for 3.5 weeks now. I have my first tests in my hand. I check all the abnormal flags on the internet. The info is there. I would not trust any one source. Even if it is not you that has the disease, you want the answers as best possible.
Diet plays a big part, there are foods that help the liver, so eating only those can play a big part in recovery.
Hope I have contributed in a positive way, stay on top of this for your moms sake.

Offline Mike

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #13 on: July 29, 2014, 12:26:04 pm »
Hi Bwelsh,

Please understand that there was a reason for the doctor to recommend Hep-C treatment for an individual who is 80 years old. I doubt that reason was that person is doing fine with the chronic Hep-C infection and that there are no concerns with her liver or progression of the liver disease. If this were the case, treatment would not have been recommended for a person of this age.

Regarding liver disease, it can, in fact, progress very quickly once it hits a tipping point.

Your mother has a complicated clinical picture (age, cancer, cirrhosis, chronic Hep-C infection and so on). Her current symptoms could be a combination of these factors or something entirely unrelated. Please don't discount these factors

Best wishes, Mike
« Last Edit: July 29, 2014, 12:28:04 pm by Mike »
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline bwelsh

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #14 on: July 29, 2014, 12:55:15 pm »
rainbowray - thank you.  I don't have the lab numbers in my hand.  Up until now, my Mom has been able to do all of this on her own, I never needed to get super involved.  She was feeling fine, going over labs with her docs, etc, everything was good.  He decided to start this treatment plan with her and because he has been her doctor for years, she just said "sure doc!".  When I think back about that day, I should have stopped her and got more involved... but like I said, up until now, my Mom was 100% sufficient in her own medical issues, etc.. saw her all the time, discussed her hepatitis, but she was on top of it.  I don't think she ever really got down to the nitty gritty of the numbers, she was feeling fine and was going for yearly check-ups and all was okay, until he recommends this treatment... then she got sick, and I and my siblings got more involved.

I am now at the point where I am starting to look at her labs and trying to figure out what they mean, I don't know, and neither does she.  She has been in this doctor's care for years, and he has always said her liver cirrhosis is the same, nothing new, etc, etc...  so we never really payed attention to the numbers, cause everything seemed okay.

Well obviously now it's changing.  I will start to understand the numbers and find out more and hopefully get to the bottom of why her life has completely turned upside down since this Solvadi treatment.  We have a doc apt on 8/4 then we see her hep doctor on 8/5 for which I will attend, and I hope to get lots more answers at that time.  Up until now, we had just hoped it was side effects and would go away, but it doesn't look to be going away.

Thanks for your help... you seem a little more understanding than some.

Offline bwelsh

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #15 on: July 29, 2014, 01:00:11 pm »
Mike, I believe in my heart, she was a trial patient for this medicine.  There was no need other than 'let's see how this works'.

Hindsight is 20/20... if only.  I know you all think she is "old", and because she had cancer, it's all because of that, but that's crap.  She was 100% before this medicine, so I am convinced, that this medicine did something wrong to an existing something that may have not been working perfectly fine before, but at least it was working.  Now nothing is working.

Thanks for your reply.. .but please don't dismiss her because of her age or cancer that has been in remission... for years.  It's clearly the effects of this drug... if not, why would the doctors not tell us so.  They are hiding something, perhaps this drug will kill her... I will know more next Tuesday.. I will sue if this kills her.

Offline bwelsh

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #16 on: July 29, 2014, 01:16:19 pm »
and if being "80" is a concern, why wasn't this a concern for the doctor...

because her age wasn't a factor that's why... at the time... NOW all of the sudden, it's because (she's 80)

Offline rainbowray

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #17 on: July 29, 2014, 01:45:16 pm »
Hi again bwelsh,
I read in this forum, your mom had cat scans, I don't know how conclusive those are to show cirrhosis advancement. I just had a fibroscan and it is pretty detailed and it concurred with the blood test called fibrosure. These could be better than a cat scan.
I am definitely F-3 fibrosis, bridging. Which means at early stage before scarring.
Cat scans show tumors, but I don't know about fibrosis and scarring.
Biopsy's show the detail, but they are intrusive, and cause more pain. I hate them.
Your mom is too old to suffer more.
Ask your doctor about the fibrosure and fibroscan, they are available now.
Also, I cannot emphasize the importance of a good diet.
Seems you have the question of the cirrhosis so to make sure it is validated, I suggest this.
Thanks
« Last Edit: July 29, 2014, 01:49:19 pm by rainbowray »

Offline Mike

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #18 on: July 29, 2014, 06:38:08 pm »
Bwelsh,

While I appreciate the emotions associated with an ill parent, let me be frank here.

You posted a question that you seemed to have all ready concluded what the answer should be, which indicates you just want your conclusion confirmed.

The reason I point this out is that you will be discussing some medical issues with two different specialist in August (an onochologist and a liver specialist). You may get some answers and you may not. Regardless, you need to be prepared to ask questions, other then the assumption that "the Sovaldi caused this."

Regarding age: the reason age is a factor is that it directly relates to prognosis, treatment outcomes & options. This is because, as we age, our bodies become less effective in fighting off disease, recovering from illness and more susceptible to minor injuries and illnesses turning in to major health concerns

For example, a hip fracture in a 20 year old is generally not life threatening and a full recovery can be expected. However, a hip fracture in a 70 year old can be very devastating, can lead to infection, which can turn to sepsis, causing death. Simply put, falls are major cause of death in the elderly due to the aforementioned factors. Our bodies just don't function as well or quickly as they did when we were young.

Let's consider the diagnosis of cirrhosis: If, and I hope this isn't the case, the liver specialist indicates that the cirrhosis has progressed to the point that a liver transplant is required, age becomes a significant factor, as they will not transplant a liver in an 80 year old.

The point is this: you need to be prepared for answers and explanations you may not expect, may not understand and didn't think you'd hear - especially when you are helping a loved one make medical decisions.

Sincere wishes and prayers for you and your mother, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline willie g

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #19 on: July 30, 2014, 05:08:47 am »
YOU CAN GO ON ALL THE SITES YOU WANT BLEWISH  BUT THIS IS JUST A FORUM WHERE FOLKS GIVE THIER OPINIONS ON WHATS GOING ON WITH THIER HEPC OR OTHERS AND THE MODERATOR IS JUST GIVING YOU SCENARIOS NOT ;TELLING; YOU WHAT TO DO. SHES JUST SUGGESTING THIS AND THAT AND SOMETIMES YOU HAVE TO GIVE THE ;FULL; RUNDOWN OF THE MEDS, THE DRS. HER TAKE ON IT BECAUSE YOU HAVE SAID SHE IS A SMART LADY. SOMETIMES WE CAN OVER ADVOCATE FOR OTHERS ESPECIALLY WHEN THIER YOUR CLOSE RELATIVES AS THIS IS YOUR MOTHER SO I SEE YOUR DEEP CONCERN. IF YOU HAVE USED ALL YOUR OPTIONS AS FAR AS DRS.  GO  THEN  A FORUM  CAN NOT BE A DR. WE JUST SHARE OUR STORIES OUR STREGTHS AND OUR HOPES FOR EACH OTHER. THERE ARE DR. SITES BUT ONCE AGAIN YOUR ,;HER; DRS. HAVE ALL HER INFO AND THEY ARE THE ONES WHO SHOULD GET TO THE BOTTOM OF THIS OR TRY OTHER  DRS. OR SPECIALISTS.I AM SORRY YOUR NOT FINDING THE RIGHT BULLET HERE FOR YOUR MOMS SITUATION BUT NEVER GET ANGRY. CONCERNED YES BUT REMEMBER ANGER JUST MAKES US DO AND SAY THINGS WE SOMETIMES DONT WANT TO SAY. SOMETIMES THE FIRST THINGS WE SAY ARE THE LAST THINGS WE MEEN.  I HAVE SAW YOU HAVE HAD MANY NICE FEEDBACKS FROM FOLKS ON THIS SITE AND THEY HAVE EVEN TAKEN THIER OWN TIME TO REASEARCH DIFFERNT THINGS FOR YOU AND YOUR MOM. JUST KEEP PLUGGING AWAY BUT DO IT WITH PROFESSIONALS NOT A FORUM THAT ARE NOT AND AS YOU SEE WE ARE TAKING THIS A DAY AT A TIME LIKE YOU.WE WOULD LIKE ANSWERS RIGHT AWAY TOO BUT EVERYONE HAS A DIFFERNT SCENARIO AND AS YOU HAVE SEEN WHEN THE SUGGESTIONS HERE HAVE NOT HELPED FOLKS GO TO THIER DRS. IN THE END FOR THEY PERSONALY KNOW YOU AND YOUR MOM AND WE JUST ;STARTED; COMMUNICATING WITH YOU.WITH THAT SAID  I AM GOING TO KEEP ON PRAYING FOR YOU BUT PERSONALY I THINK THIS FORUM DESERVES MORE RESPECT THAN YOUR LAST COMMENT AND PERSONALY IF IT WERE ME . AND I BELIEVED IN A HIGHER POWER AS YOU DO I THINK I WOULD SAY. IM SORRY FOLKS BUT I SHOULD TRY ANOTHER AVENUE.  GRATITUDE NOT ATTITUDE, GOOD LUCK TO YOU AND MAY YOU FIND THAT MAJIC BULLET YOUR LOOKING FOR.  WILLIE G



Offline bwelsh

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #20 on: July 30, 2014, 10:26:23 am »
rainbowray - thank you.  I will bring up fibrosure and fibroscan when we see her hep doctor on Tuesday 8/5, thank you.  Her cat scans seem to have been sufficient showing cirrhosis, I believe, because everytime she had them, the doctor would give a diagnosis on if the cirrhosis had gotten worse. ... but I will confirm that next week when we see him.

Thank you for your reply.

Offline bwelsh

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #21 on: July 30, 2014, 10:28:42 am »
Mike - thank you.  thank you for understanding that yes it's a painful time for me... to watch my Mom suffer like this after being so active just a few months ago :(

... and I understand that being 80, she may not recover the same as she would if she were 60... perhaps that is what's happening, we are still not sure.

Like I said... her bone marrow results will be back on Monday.  They will show for sure if any cancer has returned. We see her hep doctor Tuesday night.  Based on Monday's results, we will go from there.

Thanks for understanding.. it's a very difficult time for me.

Offline bwelsh

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #22 on: July 30, 2014, 10:32:02 am »
willieg - you are sweet, and thank you for your prayers... but I call it like it is.  thanks for your prayers and sweet voice, you are comforting for sure... I will keep you posted as next week we will hopefully get a lot more answers.

I have more information to bring to the docs due to this forum, so I am grateful for that, thanks.

Offline Mike

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #23 on: July 30, 2014, 12:50:11 pm »
Hi Bwelsh,

Hang in there. I know how tough this can be, as I'm going through a similar situation with my mother. It can be so overwhelming at times.

Remember, we are all pulling for you and your mother.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline bwelsh

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #24 on: July 30, 2014, 02:53:52 pm »
Well they took my Mom to the hospital just now, I just received the call.  She woke up and the room was spinning and she couldn't walk.

Please say your prayers.  She is on her way to the hospital via the ambulance.  My brother and husband and sister are on their way.  I am going up there now.

I will keep everyone updated... thank you for your prayers.

Offline lporterrn

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #25 on: July 30, 2014, 08:17:40 pm »
Praying...
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline rainbowray

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #26 on: July 31, 2014, 10:07:19 am »
Just prayed, for your Mom and you.

Offline willie g

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #27 on: July 31, 2014, 02:47:21 pm »
ME TOO,  WILLIE G

Offline FRED220

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #28 on: August 04, 2014, 05:35:29 pm »
Hello, how is mom doing? Hope all is well.

Offline willie g

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  • geno 1 25million etc. s/o for treatment
Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #29 on: August 05, 2014, 05:59:31 pm »
GOOD QUESTION FRED220, I WAS WONDERING THE SAME THING, TO BAD WE CANT GIVE HER A CALL, HOPE ALL IS WELL AND I HOPE SHE COMES BACK TO TELL US THE REST OF THE STORY, A HAPPY ONE LORD,PLEASE,   WILIIE G

Offline Mike

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #30 on: August 05, 2014, 07:50:18 pm »
I've been saying prayers and hoping for an update myself.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline bwelsh

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #31 on: August 07, 2014, 07:42:11 am »
Thanks everyone for your concern, you are all too kind.  I haven't had a break to update you all, I am so sorry, it's been exhausting and scary since last week when went to the hospital.

My Mom is doing much better, however, she almost died.  She was admitted last Wednesday.  They did a ton of tests right away, head X-ray, chest X-ray as she collapsed and couldn't' breathe or walk.

It took them awhile but they finally figured her blood was incredibly thick, no oxygen or nutrients were being delivered to her body.  She was clotting severely inside.  They put a pic line in and started blood transfusion.  First she had Albumin (not sure if spelled that right), then Plasma and some other blood, I am not so sure.  She had about 3 or 4 of these treatments from Wednesday thru Sunday.  She was getting a little better but not much.

She had water around her heart.  She couldn't breathe.  Somehow they took care of that and that was gone.

Slowly she has gotten better, day by day.  They know it's because of the new blood, but they are not sure what caused her old blood to clot so bad.

In the meantime they have have done scan, and X-rays and they can't find what happened.  They thought first her cancer was back and had caused the blood to thicken so, but now they are not so sure.  She went down for a CAT scan yesterday and their report was they are not sure if the saw nodes or veins, ugggh, and they didn't want to biopsy anything they weren't sure of.

It has been by far a horrible experience for all of us, especially my Mom.  She was so very sick.  … but she is getting better.  I hope it says, she was so very sick :(

.. but we would still like to know why.  We know the reason for her collapse and her fatigue was that the viscosity in her blood was incredibly thick, which was the reason for everything, but we still don't know what caused that to happen, and if it will return.

I will try to keep you all updated.  Her hep doctor and cancer doctor have been extremely involved, but they are still baffled.

She's had lung doctors and heart doctors who have cleared her heart and lungs, so that is good.

.. but she is much better. She walked last night to the bathroom and is talking now without breathing difficulty which is the first time she could breathe since May, about a 1/3 way into the Sovaldi treatment when it all started.

Thanks for your concern… it's very sweet.  She is still in the hospital, we are not sure when they release her but we think it will be soon.

We are just scared that it will return, and we don't know what it was :(

Offline bwelsh

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #32 on: August 07, 2014, 07:52:48 am »
also I did ask her hep doctor when we will know if even the Sovaldi worked, and he said we won't know for a few months yet?, I don't get that, but I really don't care. She was fine living with her hep, it was in remission (or not causing problems), and all this started when she started the Sovaldi treatment.

Anyway he said 'if it didn't work, there are more options and more medicine we can look into'.  I replied 'no thank you!!'. We are not doing anymore hep treatments for her…. hell this one just about killed her.  If it turns about to be anything, we are pretty convinced that this treatment in fact lowered her immense system and compromised her system so bad, that it allowed something to happen, not sure, but that's our finding… it's the only thing that makes sense.

Thanks again everyone for your prayers, they have seemed to work, hugs to you all.

Offline bwelsh

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #33 on: August 07, 2014, 07:58:56 am »
one last thing… that hospital saved her life.  Those nurses and doctors saved her life.    She was complaining last night about something… and I said "Mom, you shouldn't really complain, look at your now compared to a week ago", and she said "oh yeah", LOL  She is back… laughing, and being silly.  My same old Mom.

Praise the Lord is right… they saved her life.. someone did.

Offline Pelham123

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  • Genotype 2 - Tx Sovaldi/Riba
Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #34 on: August 07, 2014, 08:19:16 am »
Thank you for posting.  It broke our hearts to hear how your Mom suffered.  It's such a relief to know she is better.

Offline rainbowray

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  • Gen 1B
Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #35 on: August 07, 2014, 10:55:40 am »
Hi bwelsh,
Glad your mom is better, sounds like she went thru alot. I could give my opinion but without previous lab info it would just be a guess.
I am thinking the virus is undetected in her, and they are waiting to see if it returns.
That is why they say they have to wait . The rule for everyone is take test 3-6 months after treatment and check viral load. If she had viral load now, they then would have said it did not work.
The blood getting thick like that is a mystery maybe others on forum may know more about. I first think about platelet count, but I am just guessing.
Glad she is better, will keep praying.

Offline bwelsh

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  • Posts: 27
Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #36 on: August 19, 2014, 05:13:42 pm »
hi everyone, and thank you for your thoughts and prayers.

we are still fighting.  my mom is home but still week.

her platelets keep dropping, we don't know why.  whatever is causing this may or may not have been triggered by sovaldi, we still don't know... they are still trying to find out why her platelets keep dropping... but we are hanging in there.

she has a doc appointment on Friday, hopefully we'll do more tests... so far she's tired and still fatigued... not what she was months ago.

just documenting this for the sake of others... I know this drug is new and there will be lots after us.. it's good to have all experiences documented.

hope you are all doing well. 

Offline Mike

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #37 on: August 19, 2014, 05:58:17 pm »
Hi Bwelsh,

I'm so glad to hear your mother is doing better and is at home now.

I know how trying this can be - can just zap your energy.

Hang in there, and best wishes to you and your mom.

Sincerely, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline willie g

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  • geno 1 25million etc. s/o for treatment
Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #38 on: August 20, 2014, 12:33:54 am »
hey bwelish,  we have been praying for you,glad your back and tell your mom I said hi and this medical stuff can drive you crazy,, sometimes I have gottin over one hurdle to end up with something else wrong,, it really stinks but keep hanging in there with your faith. we don't always get what we want to hear and sometimes life can get worse before it gets better,, I have to always be looking around to realize I am doing ok compared to so many others, your moms an example,, once again I am reminded im doing just fine.  willie g

Offline Sikasadog

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Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #39 on: July 09, 2015, 03:35:35 pm »
Well they took my Mom to the hospital just now, I just received the call.  She woke up and the room was spinning and she couldn't walk.

Please say your prayers.  She is on her way to the hospital via the ambulance.  My brother and husband and sister are on their way.  I am going up there now.

I will keep everyone updated... thank you for your prayers.

Offline Sikasadog

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  • Posts: 2
Re: My Mom is still so sick... 7 weeks post Sovaldi... need advice
« Reply #40 on: July 09, 2015, 03:53:41 pm »
Hi B WELSH, I LIKE YOUR MOM JUST FINISHED THE SOL/RIV TMNT; 1ST WEEKS,I SAID THIS IS A CAKE WALK. BUT AFTER THAT EVERYTHING WENT DOWN HILL FAST, THE DR TOLD ME LITTLE OR FEW SIDE EFFECTS. THEN CAME THE FATIGUE, TIREDNESS, BEING UNABLE TO PUT ONE FOOT IN FRONT OF ANOTHER, NAUSEA, VOMIT, INCREDIBLE BACK PAIN, STOMACH PAINS & BURNING, UNABLE TO THINK, WHEN I DRINK WATER Or ANYTHING IT FEELS LIKE DRINKING CONCRETE, SWEATS, BODY PAINS, IF I OVER DO IT, I VOMIT. NO APPETITE. I'VE BEEN INJURED SEVERELY MANY TIMES BUT THIS IS NO FUN, SLIGHT IMPROVEMENT BUT STILL SICK AS A DOG. I'M GOING IN TO SEE MY DR TOMORROW. I'LL BE PRAYING FOR YOUR MOM.

 


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