I have a question concerning my mom

chessies433

Hello. I am new here. My mother is going on 82 in November. She is a breast cancer survivor.
She was diagnosed with breast cancer at age 74.
She went through all the common radiation and Chemo treatments and of course all the uncomfortable and terrible issues that come with the treatments but she survived it.

About two yrs ago they said the cancer cells were back and she had to take shots. We live over 200 miles from her Doctor and traveling in the winter time made it very difficult for her to get to the doctor , so she opted to not get her shots.

It was discovered this late winter that she had developed a colon tumor that was obstructing her colon. Hence she had to go back on Chemo. They gave her only 3 months with NO Chemo or 8 with chemo.

Its been 5 months now and she is still with us. My brother drives my folks every friday to the city to get the treatments. She has lost a lot of weight, but mostly due to the fact she isnt eating or drinking properly. And I personally cannot get her to follow any schedule or routine or try certain things. She insists that she is older than me and she doesnt like being told what to do. She said to me recently that she wasnt a baby and she was fine. This isnt just a result of her cancer...she has been this way all her life. So it is mostly a battle of wills. The doctors keep telling her to drink more water. she is very anemic at this point and weak. But she still has a strong voice and still does housework and takes care of my diabetic step dad who is prit near blind and insists she do everything for him. Its been a battle trying to get them help that they refuse to get around the home.

anyhow my main question is about her Hair. My sister made mention to me that moms hair wouldnt grow back AT ALL because Avastin Chemo Treatment kills the hair follicles.

Mom keeps commenting that other women she see's at the Cancer clinic, their hair is coming back but her's isnt. I feel bad. My sister told her it wouldnt because of the Avastin thats being used. Is this true? I have a friend in the lower 48 who takes care of people like my mom and she said she has never seen anyone on Avastin that didnt have their hair come back. She said it was normal to lose it (I know this already) but that it always comes back once the chemo is stopped. Mom has been on Chemo now for alls summer. What is your opinions if I may venture to ask.

Also, I read something about F? I can't remember now what the original forum said.. its something inthe treatment? And it almost killed one persons mom? Can I jog someones memory about what the F? is? thanks so much

God bless
Kath

chessies433

Oh I forgot to say this also
MOM DID get her shots for some time.. it was WHEN the winter came and the cold and traveling made it difficult to get to the city for the shots that she EVENTUALLY chose to not get the shots, also the financial end of it was very difficult for her.

dianetavegia

Welcome Kath
I'm sorry to hear about your Mom. My mother is 78 and VERY stubborn .... ACK EEK YIKES! She's in Europe for 35 peace-filled days. (Wink wink)

Did your mother have surgery to remove the blockage in her colon? If not, this is most probably why she isn't eating or drinking. The tumor clogs things up and it's quite uncomfortable to eat or drink anything. Stuff just gets STUCK.

I've never used Avastin. That's for Stage IV. We have loads of members who've used Avastin and not lost their hair! Thinned, yes, but not lost it. Not sure where your sister is getting her info about the chemo drugs used for colon cancer. Hair thins because it's a fast moving cell. Chemo kills fast moving cells. The hair falls out sooner than it naturally would have. I read where one woman lost fingernails. Mine have grown very, very fast and very, very hard during chemo.

I think the F might be Folfox of Folfiri??? I am 58 and just finished 12 rounds of Folfox. Honestly, Tylenol can kill you. Aspirin can kill. Antibiotics can kill. All of these can also save lives. You'll find many thousand more 'healed' posts than 'almost died' posts concerning chemo.

Hope this is a better day and welcome, again.
Diane

chessies433

dianetavegia said:

Welcome Kath
I'm sorry to hear about your Mom. My mother is 78 and VERY stubborn .... ACK EEK YIKES! She's in Europe for 35 peace-filled days. (Wink wink)

Did your mother have surgery to remove the blockage in her colon? If not, this is most probably why she isn't eating or drinking. The tumor clogs things up and it's quite uncomfortable to eat or drink anything. Stuff just gets STUCK.

I've never used Avastin. That's for Stage IV. We have loads of members who've used Avastin and not lost their hair! Thinned, yes, but not lost it. Not sure where your sister is getting her info about the chemo drugs used for colon cancer. Hair thins because it's a fast moving cell. Chemo kills fast moving cells. The hair falls out sooner than it naturally would have. I read where one woman lost fingernails. Mine have grown very, very fast and very, very hard during chemo.

I think the F might be Folfox of Folfiri??? I am 58 and just finished 12 rounds of Folfox. Honestly, Tylenol can kill you. Aspirin can kill. Antibiotics can kill. All of these can also save lives. You'll find many thousand more 'healed' posts than 'almost died' posts concerning chemo.

Hope this is a better day and welcome, again.
Diane

Thankyou Diane
HI.. thankyou for responding. My mom hasnt had surgery. They are trying to avoid it.

To be honest.. I don't see her having the surgery and having to wear a colostomy bag. Where we all live , the care and needs it requires would be difficult at best.

I have a friend in VA whose father and mother passed away earlier this year. His mother first and then his father not long after. His dad was 93 yrs old and was ready to go ..he wanted to be with his wife. He had the same thing my mom has. It wasnt diagnosed though until it was too late and even though they did surgery, he was weakened and wanted to go home. But he had to wear a colostomy bag at the hospital and at home. He only survived approx 2 weeks after he went home. There was a local hospice care service that came in and helped daily.

Steve said that the care of the bag was monumental and without the help of the hospital people he couldn't have done it. It kept coming off..or it was painful for his dad or it wouldnt stay on right.. it was one thing after another. It leaked all the time, he said it was very frustrating.

I know my mom and I know she will not be able to care for it at their home. My dad can't see and he can't help her and probably wouldnt anyhow because of his nature.

I can't be there 24/7 and to be honest I don't think I could handle that either. I tried to help my mom with a device she wore that had to administer antibotics and fluids in her system and it scared me to death worried I wasnt going to do it right. they said it could kill her if a bubble of air got in the line. I could never remember the sequence of how to put it on her and according to my friend Steve..this colostomy bag sounded very frustrating to deal with.

My folks don't have insurance to cover them a place for people like her in the big city. My sister is trying to get a place for them up there but she has to fill out forms to see if they can get approved. I guess the places up there have a list a couple years long..almost impossible to get in to a place where they can live.

On top of that.. my dad has already stated he won't leave his home and even though mom is more or less preparing herself for that move should it come... she isnt ready to really go either. And I understand why and I can sympathize with them in this situation. But to be honest ideally? she needs to be in a place NOW. She doesnt take her diarrhea meds right , so she is always battling the accidents daily all day long. Its draining her. She won't eat right so she needs to be encouraged all day long and monitored to make sure she has enough food in her system and the right ones.

I was reading up on the 5FU stuff and the side effects sound so much like what mom is experiencing big time. She has NO hair and no eye lashes.. her eyes are running ALL the time, she mentioned being dizzy recently and thats a side effect (affect?) and yes I am aware that the tumor blocking the intestine causes her to not want to eat much. She has told me its like the food just stops and won't move.

I keep telling her to eat lots of SMALL portions through the day.. not to eat a lot at one time. She can't eat a lot at one time but what she eats I think makes a difference but she won't try to take into consideration what I am saying.

I wish she could have someone to talk to that has been there done that just like her so they can encourage her.

Anyhow..thans so much.

May the Lord bless your healing also... big hugs

Kath
Alaska

dianetavegia

chessies433 said:

Thankyou Diane
HI.. thankyou for responding. My mom hasnt had surgery. They are trying to avoid it.

To be honest.. I don't see her having the surgery and having to wear a colostomy bag. Where we all live , the care and needs it requires would be difficult at best.

I have a friend in VA whose father and mother passed away earlier this year. His mother first and then his father not long after. His dad was 93 yrs old and was ready to go ..he wanted to be with his wife. He had the same thing my mom has. It wasnt diagnosed though until it was too late and even though they did surgery, he was weakened and wanted to go home. But he had to wear a colostomy bag at the hospital and at home. He only survived approx 2 weeks after he went home. There was a local hospice care service that came in and helped daily.

Steve said that the care of the bag was monumental and without the help of the hospital people he couldn't have done it. It kept coming off..or it was painful for his dad or it wouldnt stay on right.. it was one thing after another. It leaked all the time, he said it was very frustrating.

I know my mom and I know she will not be able to care for it at their home. My dad can't see and he can't help her and probably wouldnt anyhow because of his nature.

I can't be there 24/7 and to be honest I don't think I could handle that either. I tried to help my mom with a device she wore that had to administer antibotics and fluids in her system and it scared me to death worried I wasnt going to do it right. they said it could kill her if a bubble of air got in the line. I could never remember the sequence of how to put it on her and according to my friend Steve..this colostomy bag sounded very frustrating to deal with.

My folks don't have insurance to cover them a place for people like her in the big city. My sister is trying to get a place for them up there but she has to fill out forms to see if they can get approved. I guess the places up there have a list a couple years long..almost impossible to get in to a place where they can live.

On top of that.. my dad has already stated he won't leave his home and even though mom is more or less preparing herself for that move should it come... she isnt ready to really go either. And I understand why and I can sympathize with them in this situation. But to be honest ideally? she needs to be in a place NOW. She doesnt take her diarrhea meds right , so she is always battling the accidents daily all day long. Its draining her. She won't eat right so she needs to be encouraged all day long and monitored to make sure she has enough food in her system and the right ones.

I was reading up on the 5FU stuff and the side effects sound so much like what mom is experiencing big time. She has NO hair and no eye lashes.. her eyes are running ALL the time, she mentioned being dizzy recently and thats a side effect (affect?) and yes I am aware that the tumor blocking the intestine causes her to not want to eat much. She has told me its like the food just stops and won't move.

I keep telling her to eat lots of SMALL portions through the day.. not to eat a lot at one time. She can't eat a lot at one time but what she eats I think makes a difference but she won't try to take into consideration what I am saying.

I wish she could have someone to talk to that has been there done that just like her so they can encourage her.

Anyhow..thans so much.

May the Lord bless your healing also... big hugs

Kath
Alaska

No bag here...
Kath, I don't have a bag and I believe a good number of the people here also don't.

Before my dx and surgery, I could only eat liquids like broth. Even that bothered me. My tumor wasn't that large either.

Do talk to the doctor about your mom. I don't understand why they don't remove the tumor so she can eat again. My surgery was late afternoon and I ate a regular diet at lunch the next day. I had beef stew... cannot remember what else was on the plate, but it was so good to eat again. I don't think your mom can wait til chemo shrinks the tumor to eat again! Mom could be dizzy because of her blood sugar being low from not eating. Dehydration, too. Good grief, she could get quite ill from not eating. I sure hope you can find an answer.


Meanwhile, I'm going to be praying for all of you.

Patteee

dianetavegia said:

No bag here...
Kath, I don't have a bag and I believe a good number of the people here also don't.

Before my dx and surgery, I could only eat liquids like broth. Even that bothered me. My tumor wasn't that large either.

Do talk to the doctor about your mom. I don't understand why they don't remove the tumor so she can eat again. My surgery was late afternoon and I ate a regular diet at lunch the next day. I had beef stew... cannot remember what else was on the plate, but it was so good to eat again. I don't think your mom can wait til chemo shrinks the tumor to eat again! Mom could be dizzy because of her blood sugar being low from not eating. Dehydration, too. Good grief, she could get quite ill from not eating. I sure hope you can find an answer.


Meanwhile, I'm going to be praying for all of you.

Kath- I had a temporary bag,
Kath- I had a temporary bag, but just as Diane said above, not everyone has to have one. Yes, people can have problems with them, but I think overall, most people figure out a system that works best.

I had a great-Aunt who at age 80ish was dx'd with colon cancer- they didn't do anything for her, no surgery, no chemo, nothing. Don't remember the details, but it could very well be that she refused anything and everything. Then she was 90, was in the hospital for something else and a colorectal surgeon met with my mom (who was her caregiver at the time)and told her he would like to do a resection on the Auntie, he couldn't cure her with it, but could drastically improve the quality of her life. He did, she didn't have a bag, and ended up living about 3 years beyond that.

Not sure about the permanence of your Mom's hair loss. I wasn't on that med.

trish07

Blockage?
I am assuming your mom is not completely blocked. You have not mentioned any vomiting and apparently she is having bowel movements. My husband was blocked and had to have a ileostomy, which though not an easy thing, I took complete care of it for him. But he would have not survived without this procedure. I'm sure her hair will come back, its the blockage I'm concerned about.
Take Good Care, trish

PGLGreg

Water.
"The doctors keep telling her to drink more water."

That is an issue I'm very familiar with. So easy to just drink more water, yet so hard. My mother got dehydrated, and I had a devil of a time getting her to drink. In fact, in the end, I couldn't, and she died at 89 earlier this year. Dehydration wasn't the cause of death, but it made all her medical problems worse, and I do believe, hastened the end. Please tell your mother from me, she needs to drink extra water, even if she finds it distasteful.

chessies433

dianetavegia said:

No bag here...
Kath, I don't have a bag and I believe a good number of the people here also don't.

Before my dx and surgery, I could only eat liquids like broth. Even that bothered me. My tumor wasn't that large either.

Do talk to the doctor about your mom. I don't understand why they don't remove the tumor so she can eat again. My surgery was late afternoon and I ate a regular diet at lunch the next day. I had beef stew... cannot remember what else was on the plate, but it was so good to eat again. I don't think your mom can wait til chemo shrinks the tumor to eat again! Mom could be dizzy because of her blood sugar being low from not eating. Dehydration, too. Good grief, she could get quite ill from not eating. I sure hope you can find an answer.


Meanwhile, I'm going to be praying for all of you.

thankyou
I think what they want to do is get the tumor shrunk down enough to make the surgery successful. I think it was too big that it was not a good idea for surgery. They were hoping to not have to do the ileostomy surgery if they could get the tumor size down to do the surgery.

I cant seem to talk to anyone. Mom won't give the doc permission to have my name on the 'LIST' of people in the family who can call and talk to them to ask questions. My elder sister is on the list and mom doesnt remember giving that permission but that ws a long time ago now. I can't talk sense to my folks or even my brother who takes them up every week...

I get frustrated... however I have a deep faith in the Lord God Almighty and I am praying for her complete healing (on this side of heaven) and I know that NOTHING is impossible with God , so I stand in the gap on her behalf. If ANYONE can DO anything..its GOD (smile)

Thanks for your support.

God bless
Kath

chessies433

Patteee said:

Kath- I had a temporary bag,
Kath- I had a temporary bag, but just as Diane said above, not everyone has to have one. Yes, people can have problems with them, but I think overall, most people figure out a system that works best.

I had a great-Aunt who at age 80ish was dx'd with colon cancer- they didn't do anything for her, no surgery, no chemo, nothing. Don't remember the details, but it could very well be that she refused anything and everything. Then she was 90, was in the hospital for something else and a colorectal surgeon met with my mom (who was her caregiver at the time)and told her he would like to do a resection on the Auntie, he couldn't cure her with it, but could drastically improve the quality of her life. He did, she didn't have a bag, and ended up living about 3 years beyond that.

Not sure about the permanence of your Mom's hair loss. I wasn't on that med.

Thankyou for responding
I appreciate your response. (smile) Where we live its pretty remote and it would be very difficult for mom to manage herself and dad can't. So since I cannot seem to be able to talk to anyone I have to just stand by and 'watch' as things happen..but while I stand by..I give it all to the Lord God Almighty... I am praying for her complete healing and I know He will !!

Thanks again!
Kath

chessies433

trish07 said:

Blockage?
I am assuming your mom is not completely blocked. You have not mentioned any vomiting and apparently she is having bowel movements. My husband was blocked and had to have a ileostomy, which though not an easy thing, I took complete care of it for him. But he would have not survived without this procedure. I'm sure her hair will come back, its the blockage I'm concerned about.
Take Good Care, trish

Thankyou
No..she is not completey blocked , but it was pretty large I guess..so that when she eats she feels like the food just stops and its uncomfortable. Thanks for your support!

chessies433

PGLGreg said:

Water.
"The doctors keep telling her to drink more water."

That is an issue I'm very familiar with. So easy to just drink more water, yet so hard. My mother got dehydrated, and I had a devil of a time getting her to drink. In fact, in the end, I couldn't, and she died at 89 earlier this year. Dehydration wasn't the cause of death, but it made all her medical problems worse, and I do believe, hastened the end. Please tell your mother from me, she needs to drink extra water, even if she finds it distasteful.

Thankyou !
I am so sorry to hear about your mother please accept my condolances.

I will tell my mom. problem is she just won't listen to me. sigh.... the doctors did tell her I guess according to my sister..that if she didnt drink that was bad news...

I understand why mom doesnt FEEL like drinking or eating.. I can understand that.. its just hard getting her to understand the consequences ENOUGH to cause her to make the effort.

Thankyou for responding!! and your support also
God bless ALL of you

In Christ, Kath

PGLGreg

chessies433 said:

Thankyou !
I am so sorry to hear about your mother please accept my condolances.

I will tell my mom. problem is she just won't listen to me. sigh.... the doctors did tell her I guess according to my sister..that if she didnt drink that was bad news...

I understand why mom doesnt FEEL like drinking or eating.. I can understand that.. its just hard getting her to understand the consequences ENOUGH to cause her to make the effort.

Thankyou for responding!! and your support also
God bless ALL of you

In Christ, Kath

Oh, these strong women!
"I will tell my mom. problem is she just won't listen to me. sigh.... the doctors did tell her I guess according to my sister..that if she didnt drink that was bad news..."

Yes, it all sounds very familiar. Unfortunately. I argued with my mother, who had a will of iron, and I seemed to win. She agreed to drink more. But she only drank teaspoons, when she should have been drinking cups. And so, she died.

pluckey

PGLGreg said:

Oh, these strong women!
"I will tell my mom. problem is she just won't listen to me. sigh.... the doctors did tell her I guess according to my sister..that if she didnt drink that was bad news..."

Yes, it all sounds very familiar. Unfortunately. I argued with my mother, who had a will of iron, and I seemed to win. She agreed to drink more. But she only drank teaspoons, when she should have been drinking cups. And so, she died.

Time for tough love
There are many obstacles it seems for you and your family. Your mom is being very stubborn and making it difficult to try and care for her, even remoteley.

Call the American Cancer Socieity and see of they can provide any services to her at home until you can determine if you move your folks or not. She appears to not care about her situation, refusing surgery (a mUST) etc.

Since no insurnace, does Medicare or Medicade cover anything.

The bag can be a pain at first until you figure out what type of bag works for you. It's trial and error but does get better. I've had a bag since march and finally got the right mix of products in May or June. Makes a world of difference and no big deal.

she's dizzy and weak because she is dehydrated and no nutrition.

You need to be strong and willful, keep researching and try to get some care her way until you can move them closer to you. Have it out with your Mom and ask her if she's in the fight or not. If she's not, then make it as comfortable as you can.

Her and your Dad are probably grieving over the pending changes- old people hate change, Hell, I hate change. the thought of moving, and all the extra stress of the disease and care etc.

Make a list of things you need to research and handle. Free services from ACC, medicare, nutrition, moving. Tackle one at a time. See if any friends can be enlisted to help research and get info to you (myu sister is my go-to researcher and networking queen)

You can only control a certain portion of this..the rest is up to your Mom.

Blessings to you my dear and know that you are a good person, a devoted and caring daughter, and that you can support your folks as far as they are willing to take this journey, so DON:T ever feel like you aren't doing enough. You are...it's a confusing stressful road ..I hope I wasn't too harsh on some of the things I said. I learned from my caretakers that one person has to take the role of th Hammer, and get things in action and force feed me etc...I have other caregivers that meet emotional needs.

Peggy

see my journey- the good bad and the ugly at http://www.peggyluckey.blogspot.com




Peggy

chessies433

pluckey said:

Time for tough love
There are many obstacles it seems for you and your family. Your mom is being very stubborn and making it difficult to try and care for her, even remoteley.

Call the American Cancer Socieity and see of they can provide any services to her at home until you can determine if you move your folks or not. She appears to not care about her situation, refusing surgery (a mUST) etc.

Since no insurnace, does Medicare or Medicade cover anything.

The bag can be a pain at first until you figure out what type of bag works for you. It's trial and error but does get better. I've had a bag since march and finally got the right mix of products in May or June. Makes a world of difference and no big deal.

she's dizzy and weak because she is dehydrated and no nutrition.

You need to be strong and willful, keep researching and try to get some care her way until you can move them closer to you. Have it out with your Mom and ask her if she's in the fight or not. If she's not, then make it as comfortable as you can.

Her and your Dad are probably grieving over the pending changes- old people hate change, Hell, I hate change. the thought of moving, and all the extra stress of the disease and care etc.

Make a list of things you need to research and handle. Free services from ACC, medicare, nutrition, moving. Tackle one at a time. See if any friends can be enlisted to help research and get info to you (myu sister is my go-to researcher and networking queen)

You can only control a certain portion of this..the rest is up to your Mom.

Blessings to you my dear and know that you are a good person, a devoted and caring daughter, and that you can support your folks as far as they are willing to take this journey, so DON:T ever feel like you aren't doing enough. You are...it's a confusing stressful road ..I hope I wasn't too harsh on some of the things I said. I learned from my caretakers that one person has to take the role of th Hammer, and get things in action and force feed me etc...I have other caregivers that meet emotional needs.

Peggy

see my journey- the good bad and the ugly at http://www.peggyluckey.blogspot.com




Peggy

thanks for writing
well its like this... it may be hard for most of you to understand about where we live. I live (as my parents do ) in the same town. Its a small interior town of Alaska. Where we live there are no HELPS such as you see in the Lower 48... only in the cities of Anchorage and Fairbanks... neither of which we live far from. Mom has to travel to fairbanks once a week for her chemo treatments... winter time is much more difficult..traveling 210 miles ONE way on icy roads, darkness almost round the clock.. moose endangerment on the dark highway is always a risk of accident. Not to mention the stress on my brother who carries a full time job and often has his daughter and his ex wifes other 5 kids to watch and take care of.

I have tried to take the role of a hammer..but its being rejected because they feel I am taking over and that is something they do not want.

I have tried my best to help where I can... all I can do is stand by and watch.

I appreciate it all..all what you all have had to share.

take care and may the Lord bless you all with complete healing , that which I know is possible to the nth degree.
God bless
Kath

pluckey

Kath- what a challenge
Kath- what a challenge living in alaska, so many of us here don't have that added burden of a 210 mile commute in dangersous conditions.

I'll pray for your family and that you may do the best you can with the challneges you all are facing.

((HUGS))

Peggy