5 Weeks and a day and can't handle side effects, quitting...
Canuck said
Jan 4, 2017
Hi Rip,
So sorry for your troubles. There is nothing worse than feeling bad/ill AND feeling distraught like this all at the same time (to say the least).
It IS most unfortunate and hard what you two are going through
BUT, i have to agree with everything everyone has posted here for advice.
I hope you find a way that she can continue.
Tomorrow is another day, see what unfolds for her and you at this doctors appointment.
You and her, and her doc, together, HAVE to figure out a way she can feel (even a little bit) better so as to be able to continue. Did the talk with the psychologist not help at all?
Your gastro doc tomorrow may not have the viral load results back yet, but, he "may" have some of the bloodwork back already (the ALT/AST/billirubin results, etc.) - if any of hers were elevated prior (especially the ALT), and since treatment they have decreased, then these are very good indicators/precursers to knowing her treatment IS working. Knowing these falling bloodtests may bouy her, until she recieves her viral load results.
I hope you get a good doc tomorrow who is attentive and creative and can help figure out a way she can mange to continue with a lessening of what she is going through. (Has she felt like this since week one??) Was she initially frightened to start these drugs? Was she anticipating/fearing sides? Has she ever had these tendencies for this much fear before?
Take her by the hand, let her express/vent and cry, be strong and supportive, (like Tig said) be in the room with her at the visit. Ask the questions and/or make suggestions (that she may not be able to think clearly enough to bring up for discussion) with the doc. She needs an opportunity (in whatever ways you and your docs can derive this for her) to try to feel better. YOU must remain calm, and think clearly for her - do whatever you can think of to help her through this - use comfort, reason, logic, acceptance, resolve, physical/verbal AND silent support, bring any other person in to be with her (if you know it would help) - she should not be left completely alone, or on her own, during this. If you cannot physcially be there for her (at home because of work or whatever), sometimes a 3rd person CAN be of help, if they are savy and empathetic and objective. Sometimes family and partners are "too close", and a 3rd person (or outsider) CAN (sometimes) be helpful or prove useful in a pinch. Give her every opportunity to remove all additional stressors at home, what ever they may be.
I hope you can get her into a more comfortable or calmer state tomorrow, so she has further time to reason things, so she can take a breath, re-group, steel herself to carry on one more day to glean just enough time to start to be able to reflect/judge and objectively gamble about her need to continue, and decide herself, that she CAN try. Fear IS a terrible foe to contend with. I sure commiserate with you two.
Observer is 110% correct about making sure she is "flooded" with copious/adequate water!!!! Absolutely. YOU make sure she is getting a gal of water into her.
I hope tomorrow is the beginning of a dif. scenario for her. C.
wendyo said
Jan 4, 2017
Rip - as Alison mentioned she has got to be drinking water like there is no tomorrow. I had a friend in the same boat and was gonna quit until I got all over her about her water intake and for her that was what the issue was. There are meds that can help with the sides so please try to help her hang in there to complete treatment. When I was on the old meds (interferon and riba) I also took an anti depressant, sleeping pill and anti nausea meds to get me through. So there is a way.
Let us know the outcome of the doc visit.
all best,
wendy
Observer said
Jan 4, 2017
She's almost halfway done.
I sure hope you/she/aDr. finds a way for her to complete the treatment.
Make sure she is drinking a ton of water cause that really helps with some of the side effects.
best of luck
A
Tig said
Jan 3, 2017
I'm glad you'll be seeing a gastro doc tomorrow, they can and do handle HCV treatment too, so you should get the answers you seek. These medications can cause depression anxiety, insomnia and a few more. Generally speaking, with the new drugs, these issues are far less frequent, but they can occur. Tomorrow you'll both be able to sit down with the doc and tell them exactly what has been going on. Takes notes with you and if you can go in with her, do it. Another voice and pair of ears is a valuable resource!
Reassure her that she is over 5 weeks into it and she's really through the hardest part. I would hate to see her stop now, unless there is no other solution. The most important thing is her health and safety. Be strong for her and we'll be here for you. You're doing something special for her. Good going!
iNF4M0U5H3P5T4H said
Jan 3, 2017
Thanks for the "man up" reminder bro, just what I needed... I can feel the blood returning to my limbs as I type... JimmyK=daMan
iNF4M0U5H3P5T4H said
Jan 3, 2017
Her Doctor was on vacation, they drew the blood today for her first check. I'm optimistic but realistically I don't think the gastroenterologist will be reading her the results tomorrow.
JimmyK said
Jan 3, 2017
Greetings.
First do your best to get a hold of yourself. You need to be able to put on a strong support presence for her sake so start there.
Not all is lost, that is a simple fact regardless of what she does. Having an adverse reaction to a drug does not kill your chances a5t future approval so relax.
Week 5 is interesting so let me ask, did she do a week 4 blood draw? If so the results are likely eminent and there is a good chance she has cleared the Virus at least so far as detection is concerned. A report of UND may be just what she needs to move forward with treatment.
Honestly friend, do not panic and if you are emotional, protect her from seeing that. You can tell her about it at a later date but right now she needs your strength.
JimmyK
iNF4M0U5H3P5T4H said
Jan 3, 2017
Total mental breakdown, she's convinced the meds are making her crazy and her sanity will never return even after she stops. Her doctor sucks, went on vacation the day before the side effects really ramped up and didn't leave a contact number. I HAD TO FIGHT TO get her seen today by a psych doctor! The tried pushing her off till february... epcLusa is a 12 week program she'd be done by then! WTF. We going to see the gastroenterologist tomorrow and we will get this resolved one way or another
iNF4M0U5H3P5T4H said
Jan 3, 2017
Thanks Tig, I'm grateful for any words at all... seeing I'm officially at a loss
Tig said
Jan 3, 2017
Yes, that is strange. Epclusa has the lowest known side effects. I haven't heard of anyone else have this difficulty. How long has this been going on? Does she have any allergies? Has that been considered? You should find out what's going as soon as possible. Her doctor must have an after hours number you can call to leave a message. At the least, contact them in the morning. If they can't see you, ask for a referral to another. Don't accept no for an answer.
What kind of problem is she experiencing?
iNF4M0U5H3P5T4H said
Jan 3, 2017
Epclusa, supposedly the easier of the treatments but boy there is a lot to be said about "everyone tolerates TX differently"!
Tig said
Jan 3, 2017
Hey Rip,
What's going on? You didn't mention what treatment she is on. These medications all offer different side effects, as does each combination and length of treatment. Can your back up and tell us what is happening today. If you can tell us about her treatment protocol, genotype, fibrosis stage, blood tests, recent viral load results.
Do your best to keep her on the program, at least until you can talk with a doctor. There are different things that can be done to help patients through the side effects. If she is on Ribavirin, it has some horrid side effects. There are things that can be done that will make the sides more tolerable. It's worth a try.
If you can provide some more information, it will help us understand the circumstances more clearly. Names and facility names should be omitted. We have all been through this and many here are Veterans that have been cured, but stay to help out when possible. We can't offer medical advice, but we've got a lot of experience and a little bit of knowledge! If we can help out, we'll do our best. Do your best to regain the confidence you both need to get through this. Get on the phone and FIND a doctor that will see her. Boston has a bunch of them. Just keep trying, it's worth it.
Stopping treatment mid stream isn't a wise thing to do. It will cause the virus develop resistant variants, making retreatment a challenge. Good luck. You'll get input from others, I'm sure. Absorb the support....
iNF4M0U5H3P5T4H said
Jan 3, 2017
Fumbling through tears and emotions and uhhh f@#k my life I can't find the words... sorry if that first rant is hard to follow typing through the tears !
iNF4M0U5H3P5T4H said
Jan 3, 2017
So, it's the end of week 5 for the love of my life and most likely the end of TX as well. I can only imagine her mindset right now as I feel completely hopeless and distraught in not having done a better job helping her through this! She just doesn't have it in her to deal with the side effects. Her doctor downplayed all the side effects and she was having and was actually on vacation with no way of being reached last week when my she was needed the most. We spent the day with the psychologist and tomorrow it's off to see the gastroenterologist tomorrow after being told she was unavailable until the first week in February! Totally unacceptable, the doctor is telling her she will be able to try again further down the road but from what I hear it's tougher if you've already tried tx and she's not gonna be able to finish this course nevermind the financial burden... We live just outside of Boston and could use any help or insight getting through this although I fear it's already too late! She didn't take today's dose... Please if there is someone else out there in the same boat speak now and help us muster up what it takes, I don't think my psyche can take this! I've been through hell in my 40 years on this earth and there has never been anything I couldn't handle or get someone I loved through! All I have left for family I can count on one hand as a result of cancer or worse... I held my family together through he'll and back, it's killing me.... Help?!
Hi Rip,
So sorry for your troubles. There is nothing worse than feeling bad/ill AND feeling distraught like this all at the same time (to say the least).
It IS most unfortunate and hard what you two are going through
BUT, i have to agree with everything everyone has posted here for advice.
I hope you find a way that she can continue.
Tomorrow is another day, see what unfolds for her and you at this doctors appointment.
You and her, and her doc, together, HAVE to figure out a way she can feel (even a little bit) better so as to be able to continue. Did the talk with the psychologist not help at all?
Your gastro doc tomorrow may not have the viral load results back yet, but, he "may" have some of the bloodwork back already (the ALT/AST/billirubin results, etc.) - if any of hers were elevated prior (especially the ALT), and since treatment they have decreased, then these are very good indicators/precursers to knowing her treatment IS working. Knowing these falling bloodtests may bouy her, until she recieves her viral load results.
I hope you get a good doc tomorrow who is attentive and creative and can help figure out a way she can mange to continue with a lessening of what she is going through. (Has she felt like this since week one??) Was she initially frightened to start these drugs? Was she anticipating/fearing sides? Has she ever had these tendencies for this much fear before?
Take her by the hand, let her express/vent and cry, be strong and supportive, (like Tig said) be in the room with her at the visit. Ask the questions and/or make suggestions (that she may not be able to think clearly enough to bring up for discussion) with the doc. She needs an opportunity (in whatever ways you and your docs can derive this for her) to try to feel better. YOU must remain calm, and think clearly for her - do whatever you can think of to help her through this - use comfort, reason, logic, acceptance, resolve, physical/verbal AND silent support, bring any other person in to be with her (if you know it would help) - she should not be left completely alone, or on her own, during this. If you cannot physcially be there for her (at home because of work or whatever), sometimes a 3rd person CAN be of help, if they are savy and empathetic and objective. Sometimes family and partners are "too close", and a 3rd person (or outsider) CAN (sometimes) be helpful or prove useful in a pinch. Give her every opportunity to remove all additional stressors at home, what ever they may be.
I hope you can get her into a more comfortable or calmer state tomorrow, so she has further time to reason things, so she can take a breath, re-group, steel herself to carry on one more day to glean just enough time to start to be able to reflect/judge and objectively gamble about her need to continue, and decide herself, that she CAN try. Fear IS a terrible foe to contend with. I sure commiserate with you two.
Observer is 110% correct about making sure she is "flooded" with copious/adequate water!!!! Absolutely. YOU make sure she is getting a gal of water into her.
I hope tomorrow is the beginning of a dif. scenario for her. C.
Rip - as Alison mentioned she has got to be drinking water like there is no tomorrow. I had a friend in the same boat and was gonna quit until I got all over her about her water intake and for her that was what the issue was. There are meds that can help with the sides so please try to help her hang in there to complete treatment. When I was on the old meds (interferon and riba) I also took an anti depressant, sleeping pill and anti nausea meds to get me through. So there is a way.
Let us know the outcome of the doc visit.
all best,
wendy
She's almost halfway done.
I sure hope you/she/aDr. finds a way for her to complete the treatment.
Make sure she is drinking a ton of water cause that really helps with some of the side effects.
best of luck
A
I'm glad you'll be seeing a gastro doc tomorrow, they can and do handle HCV treatment too, so you should get the answers you seek. These medications can cause depression anxiety, insomnia and a few more. Generally speaking, with the new drugs, these issues are far less frequent, but they can occur. Tomorrow you'll both be able to sit down with the doc and tell them exactly what has been going on. Takes notes with you and if you can go in with her, do it. Another voice and pair of ears is a valuable resource!
Reassure her that she is over 5 weeks into it and she's really through the hardest part. I would hate to see her stop now, unless there is no other solution. The most important thing is her health and safety. Be strong for her and we'll be here for you. You're doing something special for her. Good going!
Greetings.
First do your best to get a hold of yourself. You need to be able to put on a strong support presence for her sake so start there.
Not all is lost, that is a simple fact regardless of what she does. Having an adverse reaction to a drug does not kill your chances a5t future approval so relax.
Week 5 is interesting so let me ask, did she do a week 4 blood draw? If so the results are likely eminent and there is a good chance she has cleared the Virus at least so far as detection is concerned. A report of UND may be just what she needs to move forward with treatment.
Honestly friend, do not panic and if you are emotional, protect her from seeing that. You can tell her about it at a later date but right now she needs your strength.
JimmyK
Yes, that is strange. Epclusa has the lowest known side effects. I haven't heard of anyone else have this difficulty. How long has this been going on? Does she have any allergies? Has that been considered? You should find out what's going as soon as possible. Her doctor must have an after hours number you can call to leave a message. At the least, contact them in the morning. If they can't see you, ask for a referral to another. Don't accept no for an answer.
What kind of problem is she experiencing?
Hey Rip,
What's going on? You didn't mention what treatment she is on. These medications all offer different side effects, as does each combination and length of treatment. Can your back up and tell us what is happening today. If you can tell us about her treatment protocol, genotype, fibrosis stage, blood tests, recent viral load results.
Do your best to keep her on the program, at least until you can talk with a doctor. There are different things that can be done to help patients through the side effects. If she is on Ribavirin, it has some horrid side effects. There are things that can be done that will make the sides more tolerable. It's worth a try.
If you can provide some more information, it will help us understand the circumstances more clearly. Names and facility names should be omitted. We have all been through this and many here are Veterans that have been cured, but stay to help out when possible. We can't offer medical advice, but we've got a lot of experience and a little bit of knowledge! If we can help out, we'll do our best. Do your best to regain the confidence you both need to get through this. Get on the phone and FIND a doctor that will see her. Boston has a bunch of them. Just keep trying, it's worth it.
Stopping treatment mid stream isn't a wise thing to do. It will cause the virus develop resistant variants, making retreatment a challenge. Good luck. You'll get input from others, I'm sure. Absorb the support....