Aa
20 grams?
My mom is getting ready to start her treatment next week. She will be on tx I believe for the year as they have said she has the worst strain of the disease and her liver is at a level 4 (i think it was four... whatever the worst was) She was given the option of treatment or 10years or less of life.
Anyhow, My mother is essentially alone. She has a sister that lives with her (moved in recently) and she is supposedly going to be helping her through her care and such... thing is this sister is a habitual flake when it comes to just about anything. She may have good intentions starting out but i'm afraid she is too selfish to see it through the full length of treatment.
Because I have little to no faith in her and LOVE my mother beyond pretty much all else tying perhaps with my children and husband, I am doing all I can from 2000 miles away to make sure she has all the info and support she needs. I have started a page on facebook (still in early stages and no where near ready...) That I hope to have in place for her as well as others to come and be able to find necessary information.
If you could help me with ideas for the 20grams of fat needed while taking the medication I would be exceedingly grateful. I also may come in from time to time to chat about stuff about my mom... because frankly most of the people i talk to have no clue what this is or what it all means... and i just need an ear or two sometimes that understand what is going on when i type it all out. My mom has signed a release of info for me with her doc so I will be tracking her progress with the viral load and other aspects.
Thank you guys and i wish every one of you luck with your treatment as well!
Sami
Anyhow, My mother is essentially alone. She has a sister that lives with her (moved in recently) and she is supposedly going to be helping her through her care and such... thing is this sister is a habitual flake when it comes to just about anything. She may have good intentions starting out but i'm afraid she is too selfish to see it through the full length of treatment.
Because I have little to no faith in her and LOVE my mother beyond pretty much all else tying perhaps with my children and husband, I am doing all I can from 2000 miles away to make sure she has all the info and support she needs. I have started a page on facebook (still in early stages and no where near ready...) That I hope to have in place for her as well as others to come and be able to find necessary information.
If you could help me with ideas for the 20grams of fat needed while taking the medication I would be exceedingly grateful. I also may come in from time to time to chat about stuff about my mom... because frankly most of the people i talk to have no clue what this is or what it all means... and i just need an ear or two sometimes that understand what is going on when i type it all out. My mom has signed a release of info for me with her doc so I will be tracking her progress with the viral load and other aspects.
Thank you guys and i wish every one of you luck with your treatment as well!
Sami
I am running out the door and will be back but wanted to say you are a good daughter and we have so many suggestions you might want to print therm out. People will be here soon, I will be back in 2 hours and will make sure I send info. You are doing a very good job to try to get prepared before she starts. I pray the side effects are easy on her, I finished 5 months ago I have beginning cirrhosis. one thing I ate most of all were apples with 3 tablespoons of peanut butter
Ice cream
Bagel with cream cheese
She could have a cheese omelet with toast with butter
Avocados have a lot of healthy fat.
It is so counter intuitive to eat fat but it does get easier
Gosh, sorry my ride is here, you are among the greatest people there are
Chat back soon
Dee
Ice cream
Bagel with cream cheese
She could have a cheese omelet with toast with butter
Avocados have a lot of healthy fat.
It is so counter intuitive to eat fat but it does get easier
Gosh, sorry my ride is here, you are among the greatest people there are
Chat back soon
Dee
Wow I am sorry your relationship with your mum has apparently evolved into what it has. The sad fact is for a person with your mum's stage of fibrosis and with these meds treatment could stand to be very hard for her. The side effects can be overwhelming if not incapacitating for some people. I have seen people with the resolve of steel had to quit the Incivek a few weeks early through no fault of their own.
Is it possible for you to have a nurse or some other type of care giver to check in on your mum once ever few days? If the way you describe your mum's lifestyle is accurate and her sister is not the most reliable of relatives then you being 2000 miles away may not be sufficient no matter how willing you are to stay on top of things.
A nurse or an outside caregiver could take your mother to her to her doctor's appointments? She will need weekly labs in the beginning and then after week 12 only have labs ever so often. Her labs are crucial as they indicate how well your mum is responding to the meds.
There is a side effect called haemolytic anaemia which causes our haemoglobin to drop to unusually low amounts. Our energy is zapped and it feels like we are swimming through mud. It happens gradually and sneaks up many of us so we try to be OK when others tell us to 'buck up' but we can't on our own unless we have some kind of intervention.
I encourage you to read more about Incivek rather than just the fat requirement. The potential for the rash is immense (63%) and downplayed by many doctors.
Fat Requirement:
Here are two posts that have lots of tips for the fat requirement:
☞ Take 2 INCIVEK pills (a dose) 3 times a day; Eat a meal or snack that contains about 20 grams of fat, within 30 minutes before you take each dose of INCIVEK ☚ http://www.incivek.com/how-to-take-incivek
http://www.medhelp.org/posts/Hepatitis-C/diet-on-incivek/show/1547942
http://www.medhelp.org/posts/Hepatitis-C/Incivek-pointers/show/1722191
Questions for treating physician:
Given you are authorised to act on your mum's behalf here is this post about things you may want to ask her doctor:
http://www.medhelp.org/posts/Hepatitis-C/First-Dr-Appointment-Questions-What-do-you-wish-you-had-asked-/show/1756382
Side effects and management:
The potential for a serious rash is immense though many people do not get it. It is important to recognise it right away and treat it as it is unlikely to subside on its own. Ditto with the anal discomfort and/or diarrhoea.
Anal stuff:
http://www.medhelp.org/posts/Hepatitis-C/Incivek-Anal-Burning/show/1662229
Rash:
http://www.medhelp.org/posts/Hepatitis-C/Incivek-pointers/show/1722191
There is another lengthy post that is chock filled with information about side effect management. The author is a member named Pooh so hopefully she will post later as her post is far more informative than all the piecemeal links I provided.
This may be the one time in your mum's life she has a shot at clearing the virus. Not knowing more of the facts I would like to see her have more reliable support around her as it increases her odds of completing treatment.
Also it would be great if you could post more about her condition.
Do you have the physical copies of her labs and biopsy?
What is her exact diagnosis and what stage of fibrosis. Y
ou mentioned stage 4. Is she Cirrhotic?
How about other symptoms of cirrhosis if so?
Has she treated before?
How old is she and how would you describe her physical condition?
Does she have any other co-morbid conditions such as diabetes or the like?
Take care and best of luck. Be sure to check back later
Is it possible for you to have a nurse or some other type of care giver to check in on your mum once ever few days? If the way you describe your mum's lifestyle is accurate and her sister is not the most reliable of relatives then you being 2000 miles away may not be sufficient no matter how willing you are to stay on top of things.
A nurse or an outside caregiver could take your mother to her to her doctor's appointments? She will need weekly labs in the beginning and then after week 12 only have labs ever so often. Her labs are crucial as they indicate how well your mum is responding to the meds.
There is a side effect called haemolytic anaemia which causes our haemoglobin to drop to unusually low amounts. Our energy is zapped and it feels like we are swimming through mud. It happens gradually and sneaks up many of us so we try to be OK when others tell us to 'buck up' but we can't on our own unless we have some kind of intervention.
I encourage you to read more about Incivek rather than just the fat requirement. The potential for the rash is immense (63%) and downplayed by many doctors.
Fat Requirement:
Here are two posts that have lots of tips for the fat requirement:
☞ Take 2 INCIVEK pills (a dose) 3 times a day; Eat a meal or snack that contains about 20 grams of fat, within 30 minutes before you take each dose of INCIVEK ☚ http://www.incivek.com/how-to-take-incivek
http://www.medhelp.org/posts/Hepatitis-C/diet-on-incivek/show/1547942
http://www.medhelp.org/posts/Hepatitis-C/Incivek-pointers/show/1722191
Questions for treating physician:
Given you are authorised to act on your mum's behalf here is this post about things you may want to ask her doctor:
http://www.medhelp.org/posts/Hepatitis-C/First-Dr-Appointment-Questions-What-do-you-wish-you-had-asked-/show/1756382
Side effects and management:
The potential for a serious rash is immense though many people do not get it. It is important to recognise it right away and treat it as it is unlikely to subside on its own. Ditto with the anal discomfort and/or diarrhoea.
Anal stuff:
http://www.medhelp.org/posts/Hepatitis-C/Incivek-Anal-Burning/show/1662229
Rash:
http://www.medhelp.org/posts/Hepatitis-C/Incivek-pointers/show/1722191
There is another lengthy post that is chock filled with information about side effect management. The author is a member named Pooh so hopefully she will post later as her post is far more informative than all the piecemeal links I provided.
This may be the one time in your mum's life she has a shot at clearing the virus. Not knowing more of the facts I would like to see her have more reliable support around her as it increases her odds of completing treatment.
Also it would be great if you could post more about her condition.
Do you have the physical copies of her labs and biopsy?
What is her exact diagnosis and what stage of fibrosis. Y
ou mentioned stage 4. Is she Cirrhotic?
How about other symptoms of cirrhosis if so?
Has she treated before?
How old is she and how would you describe her physical condition?
Does she have any other co-morbid conditions such as diabetes or the like?
Take care and best of luck. Be sure to check back later
Sami, My hat is off to you for what you are trying to do. Is it possible for your mother to sign up on this site and talk directly with us. This is a very difficult treatment with lots interesting behavioral aspects as well as physical associated with it. I have found that the people who understand best what we are going through is other patients. It is just something that someone that has not experienced the treatment process can not fully understand all the idiosyncrasies. i compare it to having children, you just don't know what its like to be a parent until you are one.
I admire you immensely for what you are doing. If it is possible have your mother sign up, its easy and we can help. There is so much talent and knowledge here you can't begin to imagine.
Best of luck, rog
I admire you immensely for what you are doing. If it is possible have your mother sign up, its easy and we can help. There is so much talent and knowledge here you can't begin to imagine.
Best of luck, rog
Here are some staples I ate:
1/4 c. walnuts (in my cereal or for the afternoon or evening feedings)
1 avocado (if it didn't make me nauseous)
25 almonds
2 oz of cheddar cheese (or mix 1 oz of cheese with 15 almonds)
I also had to coat my stomach with something like yogurt after these things...the nuts did something to my stomach or something...and I would get really nauseous. The yogurt helped.
There's also some high fat yogurt out there (I forget the brand)
other things:
2 pieces of pizza
double cheeseburger
ice cream
and read the labels (thank God for nutritional labelling!)
Good luck and keep coming back here for more support...
1/4 c. walnuts (in my cereal or for the afternoon or evening feedings)
1 avocado (if it didn't make me nauseous)
25 almonds
2 oz of cheddar cheese (or mix 1 oz of cheese with 15 almonds)
I also had to coat my stomach with something like yogurt after these things...the nuts did something to my stomach or something...and I would get really nauseous. The yogurt helped.
There's also some high fat yogurt out there (I forget the brand)
other things:
2 pieces of pizza
double cheeseburger
ice cream
and read the labels (thank God for nutritional labelling!)
Good luck and keep coming back here for more support...
I have to say you are an amazing person. You have gotten some great advice so far, please take it all in. I have nothing more to add except some other fat ideas. Hummus with extra olive oil, mac and cheese, I found some mini cream puffs in the freezer section of the grocery store, I would add heavy whipping cream to some food to bump up that fat content, garlic bread with real butter (11 grams of fat/TBS), a half BLT with thick sliced bacon and lots of mayo (11 grams of fat/TBS), cream based soups, such as cream of chicken noodle, chicken dumpling, cheesy potato, full fat yogurt and kefir, and ice cream became my very best friend. Good luck to you and you have plenty of help on this site, please continue to visit and if possible have your mom visit the forum as well.
Welcome to the forum. I am very sorry to hear that your mother is ill.
If your mother is at Stage 4 fibrosis, that means cirrhosis. There are many people on this forum with cirrhosis and some are treating now, some have finished treatment, some have yet to treat. If she has cirrhosis, she needs to treat soon. She really should be under the care of a Hepatologist at a large medical facility/transplant center. They are the doctors and facilities who can best manage and treat people with cirrhosis. Cirrhotics can develop more problems during treatment than those with lower fibrosis stages so they need to be under expert medical/doctor care and supervision.
As for food, I ate a lot of Greek Gods yogurt (regular, not low fat). It is creamy. Eggnog has a lot of fat. Also, 1 avocado, 2 ounces of Cheddar cheese or Havarti cheese, nuts such as cashews and walnuts, liver pate, bratwurst, peanut butter, ice cream, cream cheese all have a lot of fat. A person can boost fat by adding mayo, extra butter, olive oil to foods and by adding heavy whipping cream to foods. Read the labels to get the 20 grams.
Vaccinations to consider are: (with Hepatologist's okay)
Flu vaccine
Shingles vaccine
Diphtheria/Tetanus booster
Hep A and Hep B vaccines. She cannot risk contracting an acute infection of Hep A or Hep B while treating chronic Hep C.
I have written a couple of posts concerning side effects. They were written to other people, but they cover the topic of side effects treating with Incivek. Here is one:
"The treatment is no picnic but it is definitely doable. Some people have few side effects or just mild side effects. Some people have more severe side effects. You will not know until you start which side effects you will have. Plus, the side effects tend to come and go.
Most of the side effects cannot really be treated. We just learn to live with them and do things to alleviate them to some extent. And we learn to adjust our expectations (of ourselves) and our schedules. The most common side effects are various aches, fatigue, headache, flu like symptoms, rash/itching, depression and/or mood changes, nausea and/or vomiting, bloating, dizziness, muscle weakness, no motivation, no energy, diarrhea, anal/rectal problems if on Incivek, brain fog. For some of these side effects a person can use Tylenol at lower doses for aches, headaches, pains, flu like symptoms (check with MD first). For diarrhea, hemorrhoids, external anal discomfort one can use Huggies baby wipes to keep the area very, very clean, Preparation H suppositories and cream, Baneal cream, Butt Balm, Desitin, Xylocaine and hydrocortizone cream. The only thing that relieved the severe internal rectal pain (for me) was to keep the stools very, very firm. The second they get even remotely soft the pain is there. To keep the stools firm I used Loperimide as needed. Not everyone gets the severe internal pain (like crapping shards of glass), but I mention it because some do, and those stools need to be kept firm if one gets the internal anal pain.
I usually take two 325 mg tabs of Tylenol when I take my injection. That seems to help with the aches and flu like symptoms. Also, I take it in the evening.
Other things a person can do are to get up slowly, rest as needed, decrease personal expectations, keep the schedule free, go with the flow. I made no plans at all while on treatment except my lab and Dr. appointments. I never knew from day to day how I would feel. I was way too tired in the evening to do anything. I also finally realized I was not going to get many projects done, especially projects that required concentration and thinking. Once I accepted that I was no longer frustrated at getting nothing done.
For the memory, leave yourself notes, get alarms, get a portable timer or programmable watch, have a routine, get a weekly pill organizer. It is crucial to figure out some way to stay on your medication schedule and remember to take your meds. I had notes and alarms all over the place, LOL. I also had all of my meds lined up in front of my nose on the counter. I wrote the days and times on the blister pack. You will think you will remember if you took your pills, but if you are like most of us on these meds, you won't remember 5 minutes later whether you took them or not. (For me, this side effect got a lot better after finishing Incivek. I still cannot read a book, but I remember things better now.)
The worst side effects can be treated with prescription medications.
*Nausea and/or vomiting ..... Zofran
*Rashand/or itching..... Hydroxyzine oral, fluocinonide ointment & clobetesol soln. topical
*Hemolytic anemia ..... Procrit or Epogen
*Neutropenia .....Neupogen
*Anal/rectal problems ..... Anusol Supp. if needed for internal pain and Xylocaine with Hydrocortizone cream for external
*Depression .....antidepressant
*There is also treatment if her platelets get too low and it is called Promacta.
These worst side effects do need to be addressed immediately. They can snowball rapidly and every one of them (the worst ones), left untreated, could be a game changer because the person may have to stop treatment if those side effects are not brought under control.
With Incivek you may get the anal problems. Keep the stools firm and utilized the products listed above.
Keep in mind you will not get all of the side effects and you will not get them all in a severe form. Most people do not get more than 1 to 3 more serious side effects.
Anemia can be a problem for some, but certainly not all or even most. The hemoglobin will drop, but for many it remains acceptable. Your Blood Counts should be drawn weekly. The Hemoglobin can drop fast.
I live alone and am 66 years old so I did some pre-treatment planning.
She may want to prepare a few things before treatment. I stocked up on staples and I bought some food that would be easy to prepare. I bought extra chicken soup and chicken broth and saltines. I bought a lot of toilet paper (good move, LOL). I got my car serviced before treatment. I had my teeth cleaned and checked before treatment.
You will need a baseline eye exam by an opthamologist before starting treatment. This should include a retinal scan and exam. The meds, especially Interferon, can occasionally cause eye problems such as retinal detachment or retinal bleeding, cotton wool spots, corneal ulcers. If she has dry eyes now, she should get on some sort of drops for them. Treatment dries the eyes further. I am on Restasis eye drops for the duration of treatment.
It is also a good idea to get the teeth checked and cleaned and any dental work done before starting treatment.
Treatment was no picnic, but it was doable for me. The main thing is to get on top of the side effects immediately as they appear (at least the ones I outlined above). Controlling the side effects is key to being able to tolerate and, in some cases, finish treatment. If you do not get the side effects (rash/itching, anal rectal, nausea/vomiting) under control, they can and will snowball. Make sure the treating doctor treats side effects proactively and aggressively. Untreated side effects or poorly managed side effects can and have caused people to have to stop treatment.
If you are on Incivek it is imperative that you eat the 20 grams of fat when you take the Incivek (take the Incivek within 30 minutes AFTER eating the 20 grams of fat). the main reason for the fat with Incivek is that you need it for the absorption of Incivek. If you do not eat that fat every time you take Incivek, you risk not getting all of the Incivek absorbed and thus you risk having a lower blood level of Incivek and possible treatment failure.
If your mother is at Stage 4 fibrosis, that means cirrhosis. There are many people on this forum with cirrhosis and some are treating now, some have finished treatment, some have yet to treat. If she has cirrhosis, she needs to treat soon. She really should be under the care of a Hepatologist at a large medical facility/transplant center. They are the doctors and facilities who can best manage and treat people with cirrhosis. Cirrhotics can develop more problems during treatment than those with lower fibrosis stages so they need to be under expert medical/doctor care and supervision.
As for food, I ate a lot of Greek Gods yogurt (regular, not low fat). It is creamy. Eggnog has a lot of fat. Also, 1 avocado, 2 ounces of Cheddar cheese or Havarti cheese, nuts such as cashews and walnuts, liver pate, bratwurst, peanut butter, ice cream, cream cheese all have a lot of fat. A person can boost fat by adding mayo, extra butter, olive oil to foods and by adding heavy whipping cream to foods. Read the labels to get the 20 grams.
Vaccinations to consider are: (with Hepatologist's okay)
Flu vaccine
Shingles vaccine
Diphtheria/Tetanus booster
Hep A and Hep B vaccines. She cannot risk contracting an acute infection of Hep A or Hep B while treating chronic Hep C.
I have written a couple of posts concerning side effects. They were written to other people, but they cover the topic of side effects treating with Incivek. Here is one:
"The treatment is no picnic but it is definitely doable. Some people have few side effects or just mild side effects. Some people have more severe side effects. You will not know until you start which side effects you will have. Plus, the side effects tend to come and go.
Most of the side effects cannot really be treated. We just learn to live with them and do things to alleviate them to some extent. And we learn to adjust our expectations (of ourselves) and our schedules. The most common side effects are various aches, fatigue, headache, flu like symptoms, rash/itching, depression and/or mood changes, nausea and/or vomiting, bloating, dizziness, muscle weakness, no motivation, no energy, diarrhea, anal/rectal problems if on Incivek, brain fog. For some of these side effects a person can use Tylenol at lower doses for aches, headaches, pains, flu like symptoms (check with MD first). For diarrhea, hemorrhoids, external anal discomfort one can use Huggies baby wipes to keep the area very, very clean, Preparation H suppositories and cream, Baneal cream, Butt Balm, Desitin, Xylocaine and hydrocortizone cream. The only thing that relieved the severe internal rectal pain (for me) was to keep the stools very, very firm. The second they get even remotely soft the pain is there. To keep the stools firm I used Loperimide as needed. Not everyone gets the severe internal pain (like crapping shards of glass), but I mention it because some do, and those stools need to be kept firm if one gets the internal anal pain.
I usually take two 325 mg tabs of Tylenol when I take my injection. That seems to help with the aches and flu like symptoms. Also, I take it in the evening.
Other things a person can do are to get up slowly, rest as needed, decrease personal expectations, keep the schedule free, go with the flow. I made no plans at all while on treatment except my lab and Dr. appointments. I never knew from day to day how I would feel. I was way too tired in the evening to do anything. I also finally realized I was not going to get many projects done, especially projects that required concentration and thinking. Once I accepted that I was no longer frustrated at getting nothing done.
For the memory, leave yourself notes, get alarms, get a portable timer or programmable watch, have a routine, get a weekly pill organizer. It is crucial to figure out some way to stay on your medication schedule and remember to take your meds. I had notes and alarms all over the place, LOL. I also had all of my meds lined up in front of my nose on the counter. I wrote the days and times on the blister pack. You will think you will remember if you took your pills, but if you are like most of us on these meds, you won't remember 5 minutes later whether you took them or not. (For me, this side effect got a lot better after finishing Incivek. I still cannot read a book, but I remember things better now.)
The worst side effects can be treated with prescription medications.
*Nausea and/or vomiting ..... Zofran
*Rashand/or itching..... Hydroxyzine oral, fluocinonide ointment & clobetesol soln. topical
*Hemolytic anemia ..... Procrit or Epogen
*Neutropenia .....Neupogen
*Anal/rectal problems ..... Anusol Supp. if needed for internal pain and Xylocaine with Hydrocortizone cream for external
*Depression .....antidepressant
*There is also treatment if her platelets get too low and it is called Promacta.
These worst side effects do need to be addressed immediately. They can snowball rapidly and every one of them (the worst ones), left untreated, could be a game changer because the person may have to stop treatment if those side effects are not brought under control.
With Incivek you may get the anal problems. Keep the stools firm and utilized the products listed above.
Keep in mind you will not get all of the side effects and you will not get them all in a severe form. Most people do not get more than 1 to 3 more serious side effects.
Anemia can be a problem for some, but certainly not all or even most. The hemoglobin will drop, but for many it remains acceptable. Your Blood Counts should be drawn weekly. The Hemoglobin can drop fast.
I live alone and am 66 years old so I did some pre-treatment planning.
She may want to prepare a few things before treatment. I stocked up on staples and I bought some food that would be easy to prepare. I bought extra chicken soup and chicken broth and saltines. I bought a lot of toilet paper (good move, LOL). I got my car serviced before treatment. I had my teeth cleaned and checked before treatment.
You will need a baseline eye exam by an opthamologist before starting treatment. This should include a retinal scan and exam. The meds, especially Interferon, can occasionally cause eye problems such as retinal detachment or retinal bleeding, cotton wool spots, corneal ulcers. If she has dry eyes now, she should get on some sort of drops for them. Treatment dries the eyes further. I am on Restasis eye drops for the duration of treatment.
It is also a good idea to get the teeth checked and cleaned and any dental work done before starting treatment.
Treatment was no picnic, but it was doable for me. The main thing is to get on top of the side effects immediately as they appear (at least the ones I outlined above). Controlling the side effects is key to being able to tolerate and, in some cases, finish treatment. If you do not get the side effects (rash/itching, anal rectal, nausea/vomiting) under control, they can and will snowball. Make sure the treating doctor treats side effects proactively and aggressively. Untreated side effects or poorly managed side effects can and have caused people to have to stop treatment.
If you are on Incivek it is imperative that you eat the 20 grams of fat when you take the Incivek (take the Incivek within 30 minutes AFTER eating the 20 grams of fat). the main reason for the fat with Incivek is that you need it for the absorption of Incivek. If you do not eat that fat every time you take Incivek, you risk not getting all of the Incivek absorbed and thus you risk having a lower blood level of Incivek and possible treatment failure.
Sorry so late to come back... i actually have been checking off and on... and waited until a phone call with mom before responding...
Ok... I got more info from mom tonight. Since I didn't have any of it yet other than just relayed vague info ...
Moms liver biopsy was stage 1 not four as i previously thought... apparently we got our wires crossed somewhere. (mom isn't always very clear with things which is another reason why I was having her do the release of info.)
She was told by her doc that the rash and the anal itching/burning is the top reasons why people go off meds. She was told as soon as she develops either diarrhea or sees any sign of the rash at all to come in immediately. The pharmacy at his office mixes this special batch of cream that really works on the rash. (not sure what it is but will endeavor to find out for everyone else.)
Her doc is only doing labs once every two weeks. (kinda scares both her and I but he has been at this for a very long time so she is trusting his judgement. Plus he said if there are any issues it will be more often)
Her doc also insisted that due to the likelihood of the diarrhea issues... she stick to a very basic list of six options for 20 grams of fat for the meds.
But I did also advise her that a lot of people mention the nausea being worse when you do just the nuts...etc. So I told her about coating her stomach as well.
i did also tell her about the site and will be emailing her a link to this forum so she can sign up and chat herself if she wants to. She is not always the most open with strangers but I am sure she will get to a point where she wants people to talk to that are going through or have been through what she is about to deal with. I may be trying my hardest but I know there is something to having people that understand first hand as opposed to those who like to think they get it :P
Also I do tend to understand more than your typical laymen at least in a medical sense... I am a national certified medical assistant so not only do i know most medical terminology I can also identify a lot of issues she might face during treatment. (not that that is a huge help from 2000 miles away... but i do what i can from talking to her and after a while from talking to her doc as well.)
Pooh I have not read your post yet because i just got it while i was typing.
Thanks to all of you...
Sami
Ok... I got more info from mom tonight. Since I didn't have any of it yet other than just relayed vague info ...
Moms liver biopsy was stage 1 not four as i previously thought... apparently we got our wires crossed somewhere. (mom isn't always very clear with things which is another reason why I was having her do the release of info.)
She was told by her doc that the rash and the anal itching/burning is the top reasons why people go off meds. She was told as soon as she develops either diarrhea or sees any sign of the rash at all to come in immediately. The pharmacy at his office mixes this special batch of cream that really works on the rash. (not sure what it is but will endeavor to find out for everyone else.)
Her doc is only doing labs once every two weeks. (kinda scares both her and I but he has been at this for a very long time so she is trusting his judgement. Plus he said if there are any issues it will be more often)
Her doc also insisted that due to the likelihood of the diarrhea issues... she stick to a very basic list of six options for 20 grams of fat for the meds.
But I did also advise her that a lot of people mention the nausea being worse when you do just the nuts...etc. So I told her about coating her stomach as well.
i did also tell her about the site and will be emailing her a link to this forum so she can sign up and chat herself if she wants to. She is not always the most open with strangers but I am sure she will get to a point where she wants people to talk to that are going through or have been through what she is about to deal with. I may be trying my hardest but I know there is something to having people that understand first hand as opposed to those who like to think they get it :P
Also I do tend to understand more than your typical laymen at least in a medical sense... I am a national certified medical assistant so not only do i know most medical terminology I can also identify a lot of issues she might face during treatment. (not that that is a huge help from 2000 miles away... but i do what i can from talking to her and after a while from talking to her doc as well.)
Pooh I have not read your post yet because i just got it while i was typing.
Thanks to all of you...
Sami
I am happy to hear that your mom is at Stage 1. That is so much better than Stage 4/cirrhosis.
One other vaccine that may be a good idea is the pneumonia vaccine, especially if she has any underlying lung diseases like asthma.
I am not sure how sticking to 6 foods for fats will work. Many people have a lot of trouble eating on triple treatment so usually people try to eat what they can and what won't nauseate them. I was eating avocados on many days and so I bought 4 for the following week. Well, suddenly the sight or taste of them was most nauseating and they all went to waste. I just could not eat them. That happened with other high fat foods too. And things I thought I would like, like ice cream, I could not stand even the thought of and never touched them. But, I did stick with Greek God's yogurt and eggnog and never got tired of either. So I guess she may be able to find some foods that will work for the entire treatment.
It sounds like her doc is willing to treat side effects and that is very good news.
One other vaccine that may be a good idea is the pneumonia vaccine, especially if she has any underlying lung diseases like asthma.
I am not sure how sticking to 6 foods for fats will work. Many people have a lot of trouble eating on triple treatment so usually people try to eat what they can and what won't nauseate them. I was eating avocados on many days and so I bought 4 for the following week. Well, suddenly the sight or taste of them was most nauseating and they all went to waste. I just could not eat them. That happened with other high fat foods too. And things I thought I would like, like ice cream, I could not stand even the thought of and never touched them. But, I did stick with Greek God's yogurt and eggnog and never got tired of either. So I guess she may be able to find some foods that will work for the entire treatment.
It sounds like her doc is willing to treat side effects and that is very good news.
Hi Sami,
I was glad to see in your follow up post that your mom is at stage 1, also known as f-1, of liver damage. That is much better than being at stage 4, or f-4 (Cirrhosis). Being at stage 1 increases her chances of clearing the virus through treatment and decreases the likelihood of her having complications with her liver during her treatment.
I'm not sure what you meant in your first post when you said that your mom has the worst strain of Hep C virus. Some genotypes are harder to treat than others, but so far as I know, all genotypes of Hep C virus cause liver damage.
I'm glad to hear that your mom is taking charge of her health and working with a doctor that she trusts to treat her Hep C virus. I'm not sure if she is under the care of a general internist, a gastroenterologist, or a hepatologist, but hopefully it is a doctor who has a lot of experience in treating Hep C.
It sounds as though your mom will be doing triple therapy with Incivek, which means that your mom probably has genotype 1. Genotype 1 is the one of the more common genotypes of the Hep C virus here in the U.S. It is difficult to treat, but the good news is that your mom is living in the best time period in history for treating Hep C, Genotype 1.
I know that when my husband was first diagnosed with Hep C in 2007, I was afraid. It was a lot of new information to try to absorb. One of the ways that I tried to calm myself down was by studying and finding out a lot of information about Hep C. Some of the information was interesting and some of it was scary.
I think that one of the best things you can do to support your mom now that she's made the decision to treat her virus is to try to empower her to make the best decisions that she can for her own health. Empower her to be her own advocate. Be there for her, offer her support and encouragement, and let her know that you love her. Know ahead of time that there will be good times and bad times through her treatment. Your anxiety and fear may be high because she is so far away from you, so you will need to do everything you can to be positive for your mom. It will likely be hard for you to watch (even from a distance) her struggle with the treatment (she'll probably be very fatigued, nauseous, uncomfortable, and otherwise not feel well), but you can support her by encouraging her and reminding her that side effects that are a problem today may not be a problem tomorrow. Every day is different, and side effects come and go. Overall though, the first 12 weeks will probably be one of the most difficult experiences of your mom's life. Again, you can advocate for your mom best by listening, encouraging, and supporting. If she feels that you are afraid or stressed about her treatment, it will add additional stress for her.
Another thing that you should realize is that Hep C treatment can cause anxiety, irritability, and depression. The medications are very tough and the treatment is very tough, so, again, expect that your mom will have days when she feels like quitting, feels discouraged, feels hopeless, or feels irritable. The best way you can support your mom, is by staying positive and supportive. Remember, tomorrow is always another day and side effects come and go.
Based on my husband's experience, I would say that the most difficult side effects of triple therapy with Incivek are: rash, anal/rectal pain, nausea, and anemia. Other difficult side effects are fatigue, anxiety/depression/irritability, bad taste/metallic taste in mouth, and flu like symptoms. Most of these side effects are manageable with both prescription and over the counter medications, but it is important to stay on top of the side effects. I strongly recommend that your mom prepare by having a lot of things at home ready to help with the side effects, as she may not feel like going out on some days.
I gathered ideas from other members of this forum and posted them in my journals. Here are the links:
http://www.medhelp.org/user_journals/show/333000/Incivek-Take-with-20-grams-of-fat
http://www.medhelp.org/user_journals/show/333004/Incivek--Ideas-for-Managing-Rash
http://www.medhelp.org/user_journals/show/333064/Incivek--Ideas-for-dealing-with-anal-rectal-pain-or-bleeding
http://www.medhelp.org/user_journals/show/334433/Hep-C-treatment--dry-mouth--metallic-taste-in-mouth
Sami, remember, your mom will probably be only handle one thing at a time. This is a very overwhelming treatment.
I agree with Idyllic that it would be great if there were someone who could come to your mom's house and check on her every few days if at all possible, someone who might be able to help with some light housekeeping, grocery shopping, or driving her to doctor appointments/lab work.
I also agree that it would be great if your mom would post on this forum so that she can establish a circle of support from people who have gone through or are going through the same treatment that she is going through. She may feel very alone right now and may need some extra support. She may find it hard to share with you how difficult her treatment is at some point, because she may not want to scare you or worry you, so it would be good for her to have another support system available as well.
Keep in touch with us and let us know how your mom is doing. Best wishes to her!
Advocate1955
I was glad to see in your follow up post that your mom is at stage 1, also known as f-1, of liver damage. That is much better than being at stage 4, or f-4 (Cirrhosis). Being at stage 1 increases her chances of clearing the virus through treatment and decreases the likelihood of her having complications with her liver during her treatment.
I'm not sure what you meant in your first post when you said that your mom has the worst strain of Hep C virus. Some genotypes are harder to treat than others, but so far as I know, all genotypes of Hep C virus cause liver damage.
I'm glad to hear that your mom is taking charge of her health and working with a doctor that she trusts to treat her Hep C virus. I'm not sure if she is under the care of a general internist, a gastroenterologist, or a hepatologist, but hopefully it is a doctor who has a lot of experience in treating Hep C.
It sounds as though your mom will be doing triple therapy with Incivek, which means that your mom probably has genotype 1. Genotype 1 is the one of the more common genotypes of the Hep C virus here in the U.S. It is difficult to treat, but the good news is that your mom is living in the best time period in history for treating Hep C, Genotype 1.
I know that when my husband was first diagnosed with Hep C in 2007, I was afraid. It was a lot of new information to try to absorb. One of the ways that I tried to calm myself down was by studying and finding out a lot of information about Hep C. Some of the information was interesting and some of it was scary.
I think that one of the best things you can do to support your mom now that she's made the decision to treat her virus is to try to empower her to make the best decisions that she can for her own health. Empower her to be her own advocate. Be there for her, offer her support and encouragement, and let her know that you love her. Know ahead of time that there will be good times and bad times through her treatment. Your anxiety and fear may be high because she is so far away from you, so you will need to do everything you can to be positive for your mom. It will likely be hard for you to watch (even from a distance) her struggle with the treatment (she'll probably be very fatigued, nauseous, uncomfortable, and otherwise not feel well), but you can support her by encouraging her and reminding her that side effects that are a problem today may not be a problem tomorrow. Every day is different, and side effects come and go. Overall though, the first 12 weeks will probably be one of the most difficult experiences of your mom's life. Again, you can advocate for your mom best by listening, encouraging, and supporting. If she feels that you are afraid or stressed about her treatment, it will add additional stress for her.
Another thing that you should realize is that Hep C treatment can cause anxiety, irritability, and depression. The medications are very tough and the treatment is very tough, so, again, expect that your mom will have days when she feels like quitting, feels discouraged, feels hopeless, or feels irritable. The best way you can support your mom, is by staying positive and supportive. Remember, tomorrow is always another day and side effects come and go.
Based on my husband's experience, I would say that the most difficult side effects of triple therapy with Incivek are: rash, anal/rectal pain, nausea, and anemia. Other difficult side effects are fatigue, anxiety/depression/irritability, bad taste/metallic taste in mouth, and flu like symptoms. Most of these side effects are manageable with both prescription and over the counter medications, but it is important to stay on top of the side effects. I strongly recommend that your mom prepare by having a lot of things at home ready to help with the side effects, as she may not feel like going out on some days.
I gathered ideas from other members of this forum and posted them in my journals. Here are the links:
http://www.medhelp.org/user_journals/show/333000/Incivek-Take-with-20-grams-of-fat
http://www.medhelp.org/user_journals/show/333004/Incivek--Ideas-for-Managing-Rash
http://www.medhelp.org/user_journals/show/333064/Incivek--Ideas-for-dealing-with-anal-rectal-pain-or-bleeding
http://www.medhelp.org/user_journals/show/334433/Hep-C-treatment--dry-mouth--metallic-taste-in-mouth
Sami, remember, your mom will probably be only handle one thing at a time. This is a very overwhelming treatment.
I agree with Idyllic that it would be great if there were someone who could come to your mom's house and check on her every few days if at all possible, someone who might be able to help with some light housekeeping, grocery shopping, or driving her to doctor appointments/lab work.
I also agree that it would be great if your mom would post on this forum so that she can establish a circle of support from people who have gone through or are going through the same treatment that she is going through. She may feel very alone right now and may need some extra support. She may find it hard to share with you how difficult her treatment is at some point, because she may not want to scare you or worry you, so it would be good for her to have another support system available as well.
Keep in touch with us and let us know how your mom is doing. Best wishes to her!
Advocate1955
Sami you have received some very good information from everyone aboe.
I am so glad your Mom is not level 1
I have cirrhosis, level 4 and it was a very hard treatment for me.
I was lucky in that I had my husband
I was going to come back and ask if your Mom could come stay with you, of course I realize that is not practical.
If your Mom did come on here, we would not know who she was, we would just provide the best support she could receive outside of you of course :)
We understand the tx and what it can do and we have all types of concoctions that have worked for us
The doc your Mom is seeing sounds pretty up to date, good thing he has the potion he can have mixed. From what I remember getting a handle on the rash before it gets very bad is key. I am glad her doc has told her to come in at the first sign of rash or diarhea. Doing blood work every 2 weeks is ok though at first I would want to have one done every week to make sure she is maintaining
I wish you the best. You could print this out or take information from it and email to your Mom
Good luck
Dee
I am so glad your Mom is not level 1
I have cirrhosis, level 4 and it was a very hard treatment for me.
I was lucky in that I had my husband
I was going to come back and ask if your Mom could come stay with you, of course I realize that is not practical.
If your Mom did come on here, we would not know who she was, we would just provide the best support she could receive outside of you of course :)
We understand the tx and what it can do and we have all types of concoctions that have worked for us
The doc your Mom is seeing sounds pretty up to date, good thing he has the potion he can have mixed. From what I remember getting a handle on the rash before it gets very bad is key. I am glad her doc has told her to come in at the first sign of rash or diarhea. Doing blood work every 2 weeks is ok though at first I would want to have one done every week to make sure she is maintaining
I wish you the best. You could print this out or take information from it and email to your Mom
Good luck
Dee
My favorite for breakfast for 20 grams was:
apple with 2 TBS of peanut butter
8 oz glass of milk
apple with 2 TBS of peanut butter
8 oz glass of milk
Hi Sami..i want to say what you are doing for your mom is a wonderful thing. you have gotten great advice and valuable info above. i took my 15th shot yesterday. its not an easy road, but your mom is very blessed to have you to support her on this long journey.
Hi guys i want to thank all of you for you comments... I gave my mom the site info so she can come and sign up and talk to you all herself as well. going to post a new post with updates in a few.
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