My daughters dont understand

[beckland]

I have asked questions before and y'all were great explaining everything. .so now im back. I am genotype 1. My gastro doc is having me start tx in August with interferon,  Ribavirin  and Solvadi. ..He explained everything to me and also let me know that since i have always been an anemic thru my life due to heavy menstrual cycle that he will keep a close check on me cause the med can my my blood low and if so me might have to lower dosage... Anyway i need you alls help explaining to my daughters the possible side effects and how i need to me not only physically prepared,  but also mentally. ... when i told them about rashes, pain, flu like symptoms, possible blood transfusion,  weakness and all that they said im being negative. ..i told them i needed to be mentally prepared cause those things can happen to me.....my question is, am i right or do you all think im being negative?  Im just trying to accept what could happen so i will be ready for it , plus i dont want them to be surprised...can yall tell me how to get them to understand please.. they are 28, 22, and 20 years old and my only support system.  They each work and have there own lives... please help me explain. ..thank you all.  

[Dee1956]

Hi I apologize for my earlier post to you. I saw that you mentioned anxiety in another post, that would be a reason not to treat with interferon.
I had heard that interferon was on its way out and one of our top members who is the best, said that there was no longer a need to use interferon.
I see that you have heard that and I am sorry for putting my foot in it.

You will have a lot of support during  your tx, there are many many wonderful people here all willing to help, advise, and support you on your way through tx.
Take Care
Dee

[beckland]

I will ask him about that. Thank you

[beckland]

I will ask him about that. Thank you

[gibsongal]

My 2 cents..
I would ask about the other treatments. I am on week 7 of sov/oly right now. UD week 2! no sides really, this is a very exciting time in  treatment of HCV..all the new meds are clearing people without causing damage like interferon/riba..

From what my doctor said, about the new meds, the interferon /riba is headed out..very soon no one will be using interferon.

that new 1 pill is coming out,

also there is the newer blood test, fibrosure, ..gives a good picture of the condition of liver function..

we did not do a new biopsy before treatment. we did the fibrosure. the results were almost the same as the biopsy i had years and years ago..

[beckland]

I will ask him. He did say it would only be 12 weeks of tx though.

[nan535]

I would ask the doctor why he has decided to go with this treatment now and not wait for the new treatment.  You can also ask him if the Sovaldi/Olysio treatment is an option for you instead of this interferon based treatment. Tell him you are concerned about the possible anemia the interferon/ribavirin will cause.

The Sovaldi/Olysio treatment is very expensive as both pills are very expensive.

On the pro side - the treatment is only 12 weeks long and I hear its not as bad as the prior triple treatments.  

I wish you the best in your decision.
Nan

[beckland]

Hi Nan, i read somewhere that it is whats recommend so i just trusted that he knows what he is doing. I just get confused n scared cause i read some of the other peoples post that say i shouldnt be on that tx... I don't know.

[nan535]

Here is an good explanation of grading and staging of a liver biopsy.

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/grade_stage_biopsy_2010.pdf

Looks like two years ago your biopsy results of Grade 2 and Stage 1 showed you had minimal inflammation but scarring had occurred and extended outside the areas in the liver that contains blood vessels. You did not have cirrhosis.

The reason your doctor is putting you on an interferon based treatment is because that is the recommended regimen for treatment-naive patients with HCV genotype 1 who are eligible to receive IFN.

Daily sofosbuvir (400 mg) and weight-based RBV (1000 mg [<75 kg] to 1200 mg [≥75 kg]) plus weekly PEG for 12 weeks is recommended for IFN-eligible persons with HCV genotype 1 infection, regardless of subtype.

http://www.hcvguidelines.org/sites/default/files/full_report.pdf   see page 18

As someone else posted there is a new combo, one pill, treatment about to be approved in October. It likely will not be available for patients until sometime in December according to some other knowledgeable posters.
Some others are on Sovaldi and Olysio combo right now. According to the guidelines (pg.18) that is the recommended treatment for those who are ineligible for interferon.

It appears your doctor thinks that based on the results of your liver biopsy two years ago, you already do have scarring but you do not have cirrhosis and therefore he is going with the recommended treatment now rather than waiting for the new treatments.

At the end of the day, the decision is yours.

Nan

[beckland]

Thank you Pata. I am very happy to know i can come here and have people who understands.

[beckland]

Hi Pamela,  I am genotype 1 and grade 2, stage 1 . That was 2 years ago when i found out i had hep c and had a liver biopsy.  At the time i had a different doc and lost my insurance.  So now i see a gastro that comes to a free clinic i go to.. Im not doing another biopsy though..I'm not sure about the tx, i just know he thinks that would be best for me..but he did say he was gonna keep a close check on my blood and would lower the dose if needed... should i not do this type of tx? Thanks for responding .

[Pamelajean1]

Well this will probably stir the pot but I'll say it anyway. Why does your doc want to treat with interferon and ribavirin in the first place?
If the damage to your liver is such that you are cirrhotic and need to treat now interferon could very well decompensate your already compensated liver. And ribavirin with already being anemic doesn't make any sense to me at all. Studies have shown and higher success with fewer side effects with Sovaldi and Olysio.
If you can wait until August....why can't you wait until October when Gilead should have a one pill approved by the FDA? If you can't wait, why at least is he not trying for Sovaldi and Olysio?
I'm certainly not a doc...or your doc that knows you and your situation...but prescribing interferon and ribavirin this day and age when so many better options are available...would at the very least...make me ask the questions.

[patra_]

All excellent advice by hoping4cure and Livelife777.  I offer an additional sugestion.  I sat down with my husband (of 41 yrs), and explained everything ZI leasrned on this Forum about my tx, the possible sides and my behavior, problems and good points.  He had been to the Dr with me so knew that this may not work as well as with some other genotypes.  

then I asked him to help monitor me.  I think involving them (as I did him) in the process, helps them understand.  That monitoring can be each one calling you at a different, but fairly set time each day, or stopping by to see how you are and if you need groceries picked up or if you need a ride to the doctor/lab, etc., or if you are ill enough for them to have to checkc with your doctor for you.

Having said that, I am having very few sides and doing well - even my hussband has noticed that I appear to be more focused when I am not having a 'weak spell' which in my case doesn't last a long time but requires me to lay down and rest.  

I am just on Sol/RIBA combo, no interferon as I had that for 7 months in 94/95 and was a null responder.  But when I was on the INF I worked everyday - true I had a sit down job, and I came home and went to bed, but I made it through.  My husband tried to be supportive then, but didn't understand what all was going on - well, neither did I at that time - so we just kind of muddled through, BUT now you have a wealth of knowledge and resource at your fingertips. The knowledge has expanded so much and this forum is available to answer your questions.  

Also we are here to cheer you on.  NO, you are not being negative, you are being prepared.  Tell your daughters for me, that as you - and they - learn more about what you will experience and and how to prepare yourself, they will see 'Positive, I. can do this Mom' back in the saddle.

Good luck, good treating and may we all meet at SVR (sustained viral response - the 24 week EOT {end of treatment} and still undected virus lab result we are all working toward).

[beckland]

Thank you so much. I tell my girls all the time I feel weak. And that is I get rid of the hep c i will have more energy.  I am scared of the tx but i know in the long run its gonna be better than if I got worse. Thank you

[Livelife777]

No my dear you are not being negative, just realistic.  Hoping4cure sent you some good information.  Mention to your children that you need their support while getting treatment.   I also have a son and daughter and they totally got it, as your daughters will too.   The trio that you are taking will need to be monitored with your Hemoglobin, so sounds like your doc is on top of things.   Perhaps share with your girls that mom will be a new person once your virus is cleared.   You may want to have a fun weekend getaway planned with them once your meds are finished.  That way they also will get involved and cheer you thru to the finish line.   In other words, have them understand that in the long run they will have a happier, healthier, mom!    It's a win, win, for all.
Take care, and be well.      ...Kim

[beckland]

Thank you for responding . Its good to have people who care..

[hoping4cure]

Hi beckland, one way to get your daughters to better understand might be to put it in the context of someone being treated for cancer. They seem to make the chemo connection and understand because there's been so much put out there by the media and most people know someone or a family relative that's been treated for cancer.

I believe the peginterferon alpha 2a or 2b was designed just for hep c patients, Pegasys for one, but there are other inteferon alph 2a such as Roferon-A used to treat cancer that have the same side effects so the comparison in my opinion is a valid one. The link below has some info and also a good page on what to eat while you're on the treatment.

http://www.hepatitiscentral.com/hcv/ifn/sideeffects.html

http://www.hepatitiscentral.com/hcv/diet.htm?ssrc=left_sidebar