Gallbladder Cancer - 2012 (Any Stage)

Cynth89

Monarch said:

Me too, Cynthia
I'm an only child too, Cynthia. When I found out about my Mom's diagnosis, my whole world stopped and sped up at the same time. I thought I was going to pass out.

I am sorry that you have been introduced to this disease. But, I'm glad you have found this board. The people here are wonderful.

Make sure that your medical providers know that you are a team. Let them know you as a family. Thank them for being part of your team and let them know you are going to push forward with a positive attitude and good expectations. You Mum is not a statistic - she is a person.

Let me know if you have any caregiver questions. I've walked in your shoes for the last 10 months. I will be happy to help you in any way possible.

Tell your Mum she has a whole host of people cheering her on!

Charmi

Hi Monarch
Hi Monarch,
Thanks for replying to my post.
my world just stopped dead when I was told. I'm only 22 and my Mum is only 58.
I will,that's why I want to go with her on Friday so they know that I am there and so that I can ask questions because Mum doesn't ask much,it is so much for her to take in.

When she starts chemo and radiation treatment will she need someone at home with her at all times? I don't live with her and my mum and father are split up so she lives alone but I can and will move back in if need be. I also work full time but I can take time off.

How did you deal with it? I can't imagine seeing her weak and I know it's going to break my heart, how did you stay strong?

Thanks,
Cynthia

Cynth89

Monarch said:

Me too, Cynthia
I'm an only child too, Cynthia. When I found out about my Mom's diagnosis, my whole world stopped and sped up at the same time. I thought I was going to pass out.

I am sorry that you have been introduced to this disease. But, I'm glad you have found this board. The people here are wonderful.

Make sure that your medical providers know that you are a team. Let them know you as a family. Thank them for being part of your team and let them know you are going to push forward with a positive attitude and good expectations. You Mum is not a statistic - she is a person.

Let me know if you have any caregiver questions. I've walked in your shoes for the last 10 months. I will be happy to help you in any way possible.

Tell your Mum she has a whole host of people cheering her on!

Charmi

Hi Monarch
Hi Monarch,
Thanks for replying to my post.
my world just stopped dead when I was told. I'm only 22 and my Mum is only 58.
I will,that's why I want to go with her on Friday so they know that I am there and so that I can ask questions because Mum doesn't ask much,it is so much for her to take in.

When she starts chemo and radiation treatment will she need someone at home with her at all times? I don't live with her and my mum and father are split up so she lives alone but I can and will move back in if need be. I also work full time but I can take time off.

How did you deal with it? I can't imagine seeing her weak and I know it's going to break my heart, how did you stay strong?

Thanks,
Cynthia

westie66

Cynth89 said:

Hi Monarch
Hi Monarch,
Thanks for replying to my post.
my world just stopped dead when I was told. I'm only 22 and my Mum is only 58.
I will,that's why I want to go with her on Friday so they know that I am there and so that I can ask questions because Mum doesn't ask much,it is so much for her to take in.

When she starts chemo and radiation treatment will she need someone at home with her at all times? I don't live with her and my mum and father are split up so she lives alone but I can and will move back in if need be. I also work full time but I can take time off.

How did you deal with it? I can't imagine seeing her weak and I know it's going to break my heart, how did you stay strong?

Thanks,
Cynthia

Dealing with Gallbladder Cancer
Hi Cynthia: I too have gallbladder cancer (diagnosed Oct 2009). I have had 24 treatments now and am awaiting meeting with my oncologist to see what the next step is. I did not have radiation but surgery removed my gallbladder, its tumour, and part of my liver. I have 6 cancerous nodules on my peritoneum which is what we are trying to get rid of now. Anyways, you ask about how your mom may react to the chemo (I can't talk to radiation as I didn't have it). I am now 68 years old and like your mom live alone (with my sweet dog Charlotte). I have lots of friends who kind of looked after me during the worst times (like after the surgery and during some periods of the last chemotherapy treatment) but no one stayed with me all the time. I had a daily nurse for awhile when I was recovering from the surgery but not during the first chemo tre atment (cisplatin/gemcitibine). However, during the last 12 treatments I had a PICC line put in (for the oxaliplatin + irenotecan + 5FU pump) and a nurse comes once a week to flush the line, take off the pump, and give me a Neulasta injection (these treatments stopped Nov 4 but I still have the weekly nurse to flush the PICC line). I had no problems with the first treatments (cisplatin/gemcitibine) but the latest treatments (oxaliplatin + irenotecan + 5Fu) had a lot more side effects, like cold intolerance, neuropathy, sweating, fatigue, diarrhea. Nevertheless, I managed on my own as long as I knew friends were close by and available if/when I needed them.

However, it all depends on how your mom will react to the chemotherapy and the radiation and it may take a few treatments to find that out. I'm sure she would love your company as it a rough disease to have. I didn't have children but I know I would have loved to have them with me or at least close by if I had.

Keep us posted on how it goes. You sound like a wonderful daughter!

Cheryl

Monarch

Cynth89 said:

Hi Monarch
Hi Monarch,
Thanks for replying to my post.
my world just stopped dead when I was told. I'm only 22 and my Mum is only 58.
I will,that's why I want to go with her on Friday so they know that I am there and so that I can ask questions because Mum doesn't ask much,it is so much for her to take in.

When she starts chemo and radiation treatment will she need someone at home with her at all times? I don't live with her and my mum and father are split up so she lives alone but I can and will move back in if need be. I also work full time but I can take time off.

How did you deal with it? I can't imagine seeing her weak and I know it's going to break my heart, how did you stay strong?

Thanks,
Cynthia

The project piece of my family's journey
Cynthia,

Your Mum is lucky to have you on her side.

Okay, here's what I did. I approached the whole thing as a project from the outset. I bought a binder, clear sleeves for paper (lots of them), a spiral notebook, and a planner.
I broke the binder into several sections - blood test results, oncologist documents, radation oncologist documents, a section for each of the individual doctors, and a section for hospital info (scheduled stays and emergency room visits). Every piece of paperwork has gone into the binder. It has come in very handy as we take it to every appt. The docs have referred to it, I've been able to answer questions, show test results, etc on the spot. (Note that all our docs willingly gave us copies of their notes from each visit. I keep those in the binder as well.)

In the notebook, I took notes at every appt. I also noted any questions we had going into the appt so that we wouldn't get caught up in the emotions and forget to get answers to things we wanted to know. I recorded Mom's blood pressure, weight, pulse, etc for every appt. When Mom was in the hospital for her liver resection, I kept detailed notes of drugs, when they were given, names of the nurses on duty, etc. Again, this information has been referred to many times.

The planner was Mom's responsibility. I bought one in her favorite color - and then "decorated" it before giving it to her. I wrote things on every page (We love you! You are a fighter! etc) - and on the bottom of EVERY page, I wrote Hope...Faith...Love. I put stickers of flowers throughout the calendar pages. And, I gave Mom a new pen. I asked her to keep up with it every day. Write down how she felt, what her temperature was, what her bp was, what made her feel better, what made her feel worse, what she ate, what she drank. It was a project in and of itself. It has been a valuable resource of info - and it also gave Mom something to do. She had visual proof that she'd not had enough to drink or that she felt better on the days she had an egg or two for breakfast, etc.

I bought a pretty bag to carry all books with us to appts.

That as the project portion of our journey. (btw - we still keep all the books up to date)

I'm going to post this so I don't lose it. And then I will address your other questions.

Love,

Charmi

Monarch

Cynth89 said:

Hi Monarch
Hi Monarch,
Thanks for replying to my post.
my world just stopped dead when I was told. I'm only 22 and my Mum is only 58.
I will,that's why I want to go with her on Friday so they know that I am there and so that I can ask questions because Mum doesn't ask much,it is so much for her to take in.

When she starts chemo and radiation treatment will she need someone at home with her at all times? I don't live with her and my mum and father are split up so she lives alone but I can and will move back in if need be. I also work full time but I can take time off.

How did you deal with it? I can't imagine seeing her weak and I know it's going to break my heart, how did you stay strong?

Thanks,
Cynthia

Being there...
Okay, Cynthia, on to the next part of your post.

My mom has a liver resection and was in the hospital for 10 days. Shortly thereafter, she had her port installed and then started chemo (continuous infusion 5FU) and radiation. I took 5 weeks off work starting with the day before her liver resection. I went back to work with intermittent leave after the first week of her chemo/radiation. The intermittent leave allows me to be gone from work when Mom needs me and to go to all the doc appts.

My dad took a full 12-week leave and then went on intermittent leave.

We never let Mom go to an appt without one (or both!) of us there. Mom has been very brave throughout. But, I know she was comforted by having us there to hold her hand and dry her tears. (Unfortunately, sometimes there is pain...being stuck with needles for tests, etc.) This also allowed her to always be dropped off at the door rather than having to walk across the parking lots.

Mom did not get sick with her chemo. (No throwing up, etc) She was nauseous quite regularly. She tired easily. Mom could not shower without help as her chemo pump was always attached. So, she required assistance. Could she have gotten by on her own? Probably. But I felt better knowing that there was someone with her.

You will see how your Mum reacts to the chemo and radiation. Take her lead. Don't be surprised if she tells you "no, it's alright...I can manage" because she doesn't want to be a bother. But I can bet she will be comforted if you are close at hand. The key is to also give her some space - let her have some alone time while you're in another room or running errands, etc - so that she feels control over something.

One of Mom's biggest hurdles was that she felt she had no control over anything. Someone was always telling her what to do, where to go, when to be there, etc. So, around the house, we made sure she made decisions and felt empowered. (I don't live with my parents but am only about 10 minutes away. However, I was at their house a lot of the time.)

When you find out what the chemo/radiation protocol is, the folks on this board will be able to give you a bit more insight into what your Mum might experience.

Again, posting before I lose this. I'll address your last question in the next post.

Charmi

(I just lost my post about dealing with the news and the future. I'll put another version of it together in the morning. Darn computer!)

Cynth89

westie66 said:

Dealing with Gallbladder Cancer
Hi Cynthia: I too have gallbladder cancer (diagnosed Oct 2009). I have had 24 treatments now and am awaiting meeting with my oncologist to see what the next step is. I did not have radiation but surgery removed my gallbladder, its tumour, and part of my liver. I have 6 cancerous nodules on my peritoneum which is what we are trying to get rid of now. Anyways, you ask about how your mom may react to the chemo (I can't talk to radiation as I didn't have it). I am now 68 years old and like your mom live alone (with my sweet dog Charlotte). I have lots of friends who kind of looked after me during the worst times (like after the surgery and during some periods of the last chemotherapy treatment) but no one stayed with me all the time. I had a daily nurse for awhile when I was recovering from the surgery but not during the first chemo tre atment (cisplatin/gemcitibine). However, during the last 12 treatments I had a PICC line put in (for the oxaliplatin + irenotecan + 5FU pump) and a nurse comes once a week to flush the line, take off the pump, and give me a Neulasta injection (these treatments stopped Nov 4 but I still have the weekly nurse to flush the PICC line). I had no problems with the first treatments (cisplatin/gemcitibine) but the latest treatments (oxaliplatin + irenotecan + 5Fu) had a lot more side effects, like cold intolerance, neuropathy, sweating, fatigue, diarrhea. Nevertheless, I managed on my own as long as I knew friends were close by and available if/when I needed them.

However, it all depends on how your mom will react to the chemotherapy and the radiation and it may take a few treatments to find that out. I'm sure she would love your company as it a rough disease to have. I didn't have children but I know I would have loved to have them with me or at least close by if I had.

Keep us posted on how it goes. You sound like a wonderful daughter!

Cheryl

Thanks
Hi Cheryl,
Thank you for replying to my post and answering my questions. Your story, like everyone elses on this board is an inspiration to me and gives me and gives me the hope and strength we need to fight this disease. I hope that they are able to get rid of the 6 cancerous nodules for you. She has one friend who lives close by but everyone else,including myself live about 40 minutes away. Once we know how she reacts to the treatment we can see if someone needs to be with her at all times and if so I will be. I can take as much time off work as I need and will be going with her to every meeting and appointment she has so that I can keep track of how everything is going. She also has a cancer nurse for when she needs one to come to the house. I love her so much and will do anything to make it easier for her and we will fight this with everything we have!

Take care,
Cynthia

Cynth89

Monarch said:

The project piece of my family's journey
Cynthia,

Your Mum is lucky to have you on her side.

Okay, here's what I did. I approached the whole thing as a project from the outset. I bought a binder, clear sleeves for paper (lots of them), a spiral notebook, and a planner.
I broke the binder into several sections - blood test results, oncologist documents, radation oncologist documents, a section for each of the individual doctors, and a section for hospital info (scheduled stays and emergency room visits). Every piece of paperwork has gone into the binder. It has come in very handy as we take it to every appt. The docs have referred to it, I've been able to answer questions, show test results, etc on the spot. (Note that all our docs willingly gave us copies of their notes from each visit. I keep those in the binder as well.)

In the notebook, I took notes at every appt. I also noted any questions we had going into the appt so that we wouldn't get caught up in the emotions and forget to get answers to things we wanted to know. I recorded Mom's blood pressure, weight, pulse, etc for every appt. When Mom was in the hospital for her liver resection, I kept detailed notes of drugs, when they were given, names of the nurses on duty, etc. Again, this information has been referred to many times.

The planner was Mom's responsibility. I bought one in her favorite color - and then "decorated" it before giving it to her. I wrote things on every page (We love you! You are a fighter! etc) - and on the bottom of EVERY page, I wrote Hope...Faith...Love. I put stickers of flowers throughout the calendar pages. And, I gave Mom a new pen. I asked her to keep up with it every day. Write down how she felt, what her temperature was, what her bp was, what made her feel better, what made her feel worse, what she ate, what she drank. It was a project in and of itself. It has been a valuable resource of info - and it also gave Mom something to do. She had visual proof that she'd not had enough to drink or that she felt better on the days she had an egg or two for breakfast, etc.

I bought a pretty bag to carry all books with us to appts.

That as the project portion of our journey. (btw - we still keep all the books up to date)

I'm going to post this so I don't lose it. And then I will address your other questions.

Love,

Charmi

Wonderful
Hi Charmi,

What a wonderful idea!! That is such a great way to keep track of everything and is great to see how she is doing and if there is improvement or if she takes a step backwards you can see very quickly. I will make sure i get a binder and notebook. I already have written some questions down that I want to ask the specialist on friday so I don't forget anything.

love,
Cynthia

Cynth89

Monarch said:

Being there...
Okay, Cynthia, on to the next part of your post.

My mom has a liver resection and was in the hospital for 10 days. Shortly thereafter, she had her port installed and then started chemo (continuous infusion 5FU) and radiation. I took 5 weeks off work starting with the day before her liver resection. I went back to work with intermittent leave after the first week of her chemo/radiation. The intermittent leave allows me to be gone from work when Mom needs me and to go to all the doc appts.

My dad took a full 12-week leave and then went on intermittent leave.

We never let Mom go to an appt without one (or both!) of us there. Mom has been very brave throughout. But, I know she was comforted by having us there to hold her hand and dry her tears. (Unfortunately, sometimes there is pain...being stuck with needles for tests, etc.) This also allowed her to always be dropped off at the door rather than having to walk across the parking lots.

Mom did not get sick with her chemo. (No throwing up, etc) She was nauseous quite regularly. She tired easily. Mom could not shower without help as her chemo pump was always attached. So, she required assistance. Could she have gotten by on her own? Probably. But I felt better knowing that there was someone with her.

You will see how your Mum reacts to the chemo and radiation. Take her lead. Don't be surprised if she tells you "no, it's alright...I can manage" because she doesn't want to be a bother. But I can bet she will be comforted if you are close at hand. The key is to also give her some space - let her have some alone time while you're in another room or running errands, etc - so that she feels control over something.

One of Mom's biggest hurdles was that she felt she had no control over anything. Someone was always telling her what to do, where to go, when to be there, etc. So, around the house, we made sure she made decisions and felt empowered. (I don't live with my parents but am only about 10 minutes away. However, I was at their house a lot of the time.)

When you find out what the chemo/radiation protocol is, the folks on this board will be able to give you a bit more insight into what your Mum might experience.

Again, posting before I lose this. I'll address your last question in the next post.

Charmi

(I just lost my post about dealing with the news and the future. I'll put another version of it together in the morning. Darn computer!)

Being there
Hi Charmi,

Yes I have already made sure I can take time off work when Mum has an appointment or has chemo or radiation treatment and she has other friends who also work only part time who can also take her. She wont ever have to go by herself.

I am going to make meals that we can put in the freezer so that Mum doesnt have to cook,she can just re heat the meals when she wants onel.

Yes I understand I still need to give her space and not smother her,my Mum is a very independent person and she would hate to feel helpless and feel like a bother to everyone.

Once I find out what chemo/radiation treatment she is having I'll post it and see what people say about it. That is my biggest concern at the minute as she can't afford to lose anymore weight as she is already so thin.

How is your Mum doing now?

Thats fine,I look forward to hearing from you again.
cynthia

Lily50

Cynth89 said:

Being there
Hi Charmi,

Yes I have already made sure I can take time off work when Mum has an appointment or has chemo or radiation treatment and she has other friends who also work only part time who can also take her. She wont ever have to go by herself.

I am going to make meals that we can put in the freezer so that Mum doesnt have to cook,she can just re heat the meals when she wants onel.

Yes I understand I still need to give her space and not smother her,my Mum is a very independent person and she would hate to feel helpless and feel like a bother to everyone.

Once I find out what chemo/radiation treatment she is having I'll post it and see what people say about it. That is my biggest concern at the minute as she can't afford to lose anymore weight as she is already so thin.

How is your Mum doing now?

Thats fine,I look forward to hearing from you again.
cynthia

A Mom’s Perspective
Hi Cynthia & Charmi

What wonderful daughters you both are! Your mothers would be very proud of you both.

My daughter too is an only child and was only seventeen when I was diagnosed, she is now 23. But she helped me tremendously, just as the two of you will.

I’m so glad that the two of you have come to this board and are able to share your experience from the side of the caregiver. You have to become an advocate for your moms so that you can help them on this journey.

I too have a binder, planner and a notebook. I found that if you don’t document everything that happens you certainly won’t remember everything. It was easier to jot down the questions before going to the appointments since they can be quite stressful.
Information is power and when you have a quick ready reference with you as a tool it can be invaluable.

Cynthia, as far as staying with your mom, it is a great idea. But remember that you have to see how things go in the beginning and how much help she will need. No mom wants to be a burden to her child and if she was independent before this happened she will still want to try and be in control. I was a control freak my entire life and it was really hard for me to give up that control to anybody. But knowing that my husband and daughter were there to love and support me, made a huge difference.

My daughter and I tried to have some special time together in between chemo treatments.
We used to go out to lunch and see a movie regularly before I was diagnosed, so we just changed it up a bit and ordered take-out and watched movies on Netflix. We tried to laugh as often as we could. You both have special things that you did with your moms so try to continue to do them even if it is a little different than what you used to do.

Let us know how it is going.
Take Care
Lily

northa914

Monarch said:

Being there...
Okay, Cynthia, on to the next part of your post.

My mom has a liver resection and was in the hospital for 10 days. Shortly thereafter, she had her port installed and then started chemo (continuous infusion 5FU) and radiation. I took 5 weeks off work starting with the day before her liver resection. I went back to work with intermittent leave after the first week of her chemo/radiation. The intermittent leave allows me to be gone from work when Mom needs me and to go to all the doc appts.

My dad took a full 12-week leave and then went on intermittent leave.

We never let Mom go to an appt without one (or both!) of us there. Mom has been very brave throughout. But, I know she was comforted by having us there to hold her hand and dry her tears. (Unfortunately, sometimes there is pain...being stuck with needles for tests, etc.) This also allowed her to always be dropped off at the door rather than having to walk across the parking lots.

Mom did not get sick with her chemo. (No throwing up, etc) She was nauseous quite regularly. She tired easily. Mom could not shower without help as her chemo pump was always attached. So, she required assistance. Could she have gotten by on her own? Probably. But I felt better knowing that there was someone with her.

You will see how your Mum reacts to the chemo and radiation. Take her lead. Don't be surprised if she tells you "no, it's alright...I can manage" because she doesn't want to be a bother. But I can bet she will be comforted if you are close at hand. The key is to also give her some space - let her have some alone time while you're in another room or running errands, etc - so that she feels control over something.

One of Mom's biggest hurdles was that she felt she had no control over anything. Someone was always telling her what to do, where to go, when to be there, etc. So, around the house, we made sure she made decisions and felt empowered. (I don't live with my parents but am only about 10 minutes away. However, I was at their house a lot of the time.)

When you find out what the chemo/radiation protocol is, the folks on this board will be able to give you a bit more insight into what your Mum might experience.

Again, posting before I lose this. I'll address your last question in the next post.

Charmi

(I just lost my post about dealing with the news and the future. I'll put another version of it together in the morning. Darn computer!)

Lost Postings
Just wanted to let you know I've had the same trouble with posts, and I figured out a solution. I write what I want to say in a Word document, then cut and paste it in the comment section of my reply. That way if it ends up not posting, I still have a copy of it and can cut and paste until it finally works. Hope this helps!

lirok

Lily50 said:

A Mom’s Perspective
Hi Cynthia & Charmi

What wonderful daughters you both are! Your mothers would be very proud of you both.

My daughter too is an only child and was only seventeen when I was diagnosed, she is now 23. But she helped me tremendously, just as the two of you will.

I’m so glad that the two of you have come to this board and are able to share your experience from the side of the caregiver. You have to become an advocate for your moms so that you can help them on this journey.

I too have a binder, planner and a notebook. I found that if you don’t document everything that happens you certainly won’t remember everything. It was easier to jot down the questions before going to the appointments since they can be quite stressful.
Information is power and when you have a quick ready reference with you as a tool it can be invaluable.

Cynthia, as far as staying with your mom, it is a great idea. But remember that you have to see how things go in the beginning and how much help she will need. No mom wants to be a burden to her child and if she was independent before this happened she will still want to try and be in control. I was a control freak my entire life and it was really hard for me to give up that control to anybody. But knowing that my husband and daughter were there to love and support me, made a huge difference.

My daughter and I tried to have some special time together in between chemo treatments.
We used to go out to lunch and see a movie regularly before I was diagnosed, so we just changed it up a bit and ordered take-out and watched movies on Netflix. We tried to laugh as often as we could. You both have special things that you did with your moms so try to continue to do them even if it is a little different than what you used to do.

Let us know how it is going.
Take Care
Lily

Great Daughters
Gotta agree here. You two are fantastic. It will go a long way to the success of your mothers treatments. I am lucky to have the most wonderful wife in all the world. She is there for me with everything. She has done things for me that I would never imagine anyone doing. I admire what you both are doing.

As for me, I sit here tonight with my NEW port installed. I had my first treatment today and currently am connected to the 48 hour pump. Right now I feel terrific. No problems whatsoever. The incision for the port hurts a bit but thats it. We go back to Sloane on Friday to have them show us how to disconnect and flush so that we can do it at home and avoid the extra trip to the hospital.

Best wishes to all of you and GOOD HEALTH to all of us.

Rocky

Cynth89

lirok said:

Great Daughters
Gotta agree here. You two are fantastic. It will go a long way to the success of your mothers treatments. I am lucky to have the most wonderful wife in all the world. She is there for me with everything. She has done things for me that I would never imagine anyone doing. I admire what you both are doing.

As for me, I sit here tonight with my NEW port installed. I had my first treatment today and currently am connected to the 48 hour pump. Right now I feel terrific. No problems whatsoever. The incision for the port hurts a bit but thats it. We go back to Sloane on Friday to have them show us how to disconnect and flush so that we can do it at home and avoid the extra trip to the hospital.

Best wishes to all of you and GOOD HEALTH to all of us.

Rocky

Rocky
Hi Rocky.
Thank you. My mum is such an amazing person and I love her so much.I would do anthing and everything to help her out and get her better. I am so glad I have found this board and all of the wonderful people here:) Everyone is such an inspiration. Your wife sounds like an amazing person.

Thats terriffic that you are feeling great,I hope that continues:)

All the best.
Cynthia

Cynth89

Lily50 said:

A Mom’s Perspective
Hi Cynthia & Charmi

What wonderful daughters you both are! Your mothers would be very proud of you both.

My daughter too is an only child and was only seventeen when I was diagnosed, she is now 23. But she helped me tremendously, just as the two of you will.

I’m so glad that the two of you have come to this board and are able to share your experience from the side of the caregiver. You have to become an advocate for your moms so that you can help them on this journey.

I too have a binder, planner and a notebook. I found that if you don’t document everything that happens you certainly won’t remember everything. It was easier to jot down the questions before going to the appointments since they can be quite stressful.
Information is power and when you have a quick ready reference with you as a tool it can be invaluable.

Cynthia, as far as staying with your mom, it is a great idea. But remember that you have to see how things go in the beginning and how much help she will need. No mom wants to be a burden to her child and if she was independent before this happened she will still want to try and be in control. I was a control freak my entire life and it was really hard for me to give up that control to anybody. But knowing that my husband and daughter were there to love and support me, made a huge difference.

My daughter and I tried to have some special time together in between chemo treatments.
We used to go out to lunch and see a movie regularly before I was diagnosed, so we just changed it up a bit and ordered take-out and watched movies on Netflix. We tried to laugh as often as we could. You both have special things that you did with your moms so try to continue to do them even if it is a little different than what you used to do.

Let us know how it is going.
Take Care
Lily

Being There
Hi Lily,

It is wonderful that you have got through this disease and that you have been able to see your daughter grow up.
This board has been such an inspiration to me.

Yes Mum is a very independent person so we will see how she reacts to treatment but I am going to go ther and cook up meals for her so that she doesn't have to worry about anything like that.

I will definately mix things up and still do things with her so that she still feels like she is able to do things,even if it is just getting something to eat and watching a movie at home:)

Thanks again for all your information and helping me out,you are a wonderful person!

Cynthia

LucyDoodle

northa914 said:

Lost Postings
Just wanted to let you know I've had the same trouble with posts, and I figured out a solution. I write what I want to say in a Word document, then cut and paste it in the comment section of my reply. That way if it ends up not posting, I still have a copy of it and can cut and paste until it finally works. Hope this helps!

It's good to hear....
Hi All
It's good to hear all the positive news being posted.
Steve also had a port put in this week as it was getting difficult to get the IV access.
He has had a bit of numbness in his toes and little fingers this week, I will remind him to ask the Oncologist about L Glutamine when he sees her as it sounds like that might help.
Maudsie thanks for all the information you posted about your chemo, it helps to know what others have experienced.
Just out of interest has any one had molecular profiling done?
Ok last question, can someone tell me how to do a new post.......I only seemed to have worked out how to reply!! My 16 year old will roll his eyes if I ask him
Debbie

LucyDoodle

LucyDoodle said:

It's good to hear....
Hi All
It's good to hear all the positive news being posted.
Steve also had a port put in this week as it was getting difficult to get the IV access.
He has had a bit of numbness in his toes and little fingers this week, I will remind him to ask the Oncologist about L Glutamine when he sees her as it sounds like that might help.
Maudsie thanks for all the information you posted about your chemo, it helps to know what others have experienced.
Just out of interest has any one had molecular profiling done?
Ok last question, can someone tell me how to do a new post.......I only seemed to have worked out how to reply!! My 16 year old will roll his eyes if I ask him
Debbie

L Glutamine
Hi Maudsie and Lily,
I just wondered what dose of L Glutamine you took (and anyone else who has used it).
Steve's Oncologist was ok with him trying it but didn't mention a dose, the posts I have read on other boards seem to suggest 5g up to 10g from one to three times a day. Also do you take it continuously or just when you are on chemo weeks?
So many questions....sorry.
Debbie

Monarch

lirok said:

Great Daughters
Gotta agree here. You two are fantastic. It will go a long way to the success of your mothers treatments. I am lucky to have the most wonderful wife in all the world. She is there for me with everything. She has done things for me that I would never imagine anyone doing. I admire what you both are doing.

As for me, I sit here tonight with my NEW port installed. I had my first treatment today and currently am connected to the 48 hour pump. Right now I feel terrific. No problems whatsoever. The incision for the port hurts a bit but thats it. We go back to Sloane on Friday to have them show us how to disconnect and flush so that we can do it at home and avoid the extra trip to the hospital.

Best wishes to all of you and GOOD HEALTH to all of us.

Rocky

Yeah, Rocky!
I've been thinking about you. Meant to stop in before your port install and wish you the best. Glad things went well. I'm trusting they will continue to do so!

I always tease that my mom is going to make a nurse out of me yet! Looks like your wonderful wife is on the same track! LOL And you know what? I promise that your wife and I are happy to do whatever it takes. We're all in this for the love!

Looking forward to hearing more good progress reports as you get further into this chemo protocol!

Best wishes...ALWAYS!

Charmi

Monarch

Cynth89 said:

Being There
Hi Lily,

It is wonderful that you have got through this disease and that you have been able to see your daughter grow up.
This board has been such an inspiration to me.

Yes Mum is a very independent person so we will see how she reacts to treatment but I am going to go ther and cook up meals for her so that she doesn't have to worry about anything like that.

I will definately mix things up and still do things with her so that she still feels like she is able to do things,even if it is just getting something to eat and watching a movie at home:)

Thanks again for all your information and helping me out,you are a wonderful person!

Cynthia

Good luck today
Cynthia,

Just wanted to wish your family well today. Let us know what you find out.

Charmi

westie66

LucyDoodle said:

L Glutamine
Hi Maudsie and Lily,
I just wondered what dose of L Glutamine you took (and anyone else who has used it).
Steve's Oncologist was ok with him trying it but didn't mention a dose, the posts I have read on other boards seem to suggest 5g up to 10g from one to three times a day. Also do you take it continuously or just when you are on chemo weeks?
So many questions....sorry.
Debbie

L Glutamine
HI: I took L Glutamine Fermented powder throughout my chemo treatment with oxaliplatin + irenotecan + 5Fu pump. I took 5 grams/day mixed in juice but I'm sure you can take up to 10 grams/day and several times a day. I also took vit B6 (1 tablet/day), alpha lipoic acid (1 pill 3 times/day), and calcium/magnesium (1 pill/day). I wasn't cold intolerant at all and don't have neuropathy. I still take all of these.

To post a new discussion thread, look for the little box that says that in the upper left hand corner and type in a new subject.

Cheryl

Cynth89

Latest News
Hello,

Yesterday Mum had her appointment with the specialist and he gave us some very bad news. He said it had spread to her liver,stomach and ovaries and is stage IV. I asked about if chemo can shrink it enough what about surgery at a later date and he said that wasn't possible because it has spread to distant parts of the body like the ovaries. He said that they would have to remove so many organs because the cancer has ''shed and just attached itself everywhere''.

We have an appointment with the oncologist for chemo on wednesday and an appointment with the oncologist for radiation on friday. They are looking to do radiation on her belly button and chemo on the gallbladder but they said they weren't going to target the ovaries.
If anyone has any information on different types of chemo and radiation and can give me an input into whethe you think they should also be doing something with the ovaries please let me know. They gave me a very short time frame for her yesterday and I can't imagine her not here.

Thanks,
Cynthia

Cynth89

Latest News
Hello,

Yesterday Mum had her appointment with the specialist and he gave us some very bad news. He said it had spread to her liver,stomach and ovaries and is stage IV. I asked about if chemo can shrink it enough what about surgery at a later date and he said that wasn't possible because it has spread to distant parts of the body like the ovaries. He said that they would have to remove so many organs because the cancer has ''shed and just attached itself everywhere''.

We have an appointment with the oncologist for chemo on wednesday and an appointment with the oncologist for radiation on friday. They are looking to do radiation on her belly button and chemo on the gallbladder but they said they weren't going to target the ovaries.
If anyone has any information on different types of chemo and radiation and can give me an input into whethe you think they should also be doing something with the ovaries please let me know. They gave me a very short time frame for her yesterday and I can't imagine her not here.

Thanks,
Cynthia