Survival of PPC

Millie2011

Hi, new to this forum and into the "world of cancer". My mom is 60, diagnosed with PPC and lives in another country (Europe). In Europe we have very few "cases" of PPC per year and therefore little information or in our case consulation about this cancer. Thats why I have turned to this forum.

Mum is staged with PPC stage IV and was diagnosed in january this year. She has had two chemos taxol/carbo and responding frpm CA125 1000 to 200 so far. Good news for us. She is schedueld for one more chemo and then surgery and again three rounds of chemo.

My questions:
Do you have any statistics or information on survival from PPC? How long how you all survived so far? What is average? Even though it is individual..
Is there any methods that are used in USA but not in Europe?
How are you coping with eating? Mum is not eating at all..
Is there anything we should gain from knowing i.e C-vitamins while doing chemo or anything else?
What treatment is usually used against anxiety?

Thank you in advance from worried daughter,
Millie

stella65

Hi Millie
Sorry to meet you here, my mum has this too, it's very scary isn't it. In answer to your questions...... We were told by the doc that the average survival for PPC is 2.5 yrs, mum insisted on knowing but I see it as pointless really because everyone is different and what point is knowing an average, I am sure not going to let my mum goanywhere for a good while yet!! I don't know much about treatments but I am sure someone will be along soon with some info for you, Mum has not had too much problem with appetite, she was eating smaller amounts but we encouraged her to eat little and often, as far as I know there is no evidence of vits etc helping, I did ask the doc and he said no, there again someone else may give you some info, as for anxiety, I think the docs can prescribe something but mum finds reading and keeping as active as possible helps, is your mum able to do much walking or exercising?

pstur1

Welcome Millie
Millie, nice to have you with us, sorry it is under these circumstances. I always have to say that because I would rather meet you at the ice cream stand for a cone than here for cancer, I am sure you would too!

I actually have ovarian cancer but I have peritoneal floaters. So I have done some research on it just for the information.

PPC, unfortunately has a two years survival rate that is not exactly packaged with happy news as that last post says.

If I may expand on that however, I teach statistics and research at a local university and yes, those numbers and all the mumble jumble is very hard to read at times and makes about as much sense to the average person as being told to stand on your head and recite the Star Spangle Banner!!!! Those percentages are indeed based on the mean/average and unfortunately they are pretty accurate for the MAJORITY of folks, not all, it's what happens in the majority of case in other words. Now that isn't much comfort and I am very very sorry to have to admit that. But PPC is a very aggressive cancer I understand.

Now if you think about averages, there are people on the long term spectrum of that as well and your mom could be one but it isn't likely but I feel compelled to be open and honest with you and not give you false hope.

They are doing what they can it sounds like and my advice to you is basic, enjoy your mother, spent quality time, support, share as much as you can and relish this time together. Make sure you connect with her in ways that you have not before, get to know her, you and her, and ask about her life and the past. Embrace your love for her and know that we are here for support.

When she feels good, take advantage and do things together. Anything you need to know about helping support her, or her treatments, effects, whatever...come here and ask us. This is a really good group of gals that have been through it all, either themselves or with the ones they love.

As a caregiver, your job is far harder than ours. We get to lay around a lot and be pampered and taken care of but who will take care of you. Please always take care of you, be happy, and fulfill your life as you help to console and support your mother along the way. Most of us, while not thrilled with this, have come to certain terms with it and as such just carry on, but the caregiver is far more helpless in that area and I do NOT envy your side on this.

Very nice to have met you and I look forward to seeing your posts in the future.

Kelley

Tina Brown

pstur1 said:

Welcome Millie
Millie, nice to have you with us, sorry it is under these circumstances. I always have to say that because I would rather meet you at the ice cream stand for a cone than here for cancer, I am sure you would too!

I actually have ovarian cancer but I have peritoneal floaters. So I have done some research on it just for the information.

PPC, unfortunately has a two years survival rate that is not exactly packaged with happy news as that last post says.

If I may expand on that however, I teach statistics and research at a local university and yes, those numbers and all the mumble jumble is very hard to read at times and makes about as much sense to the average person as being told to stand on your head and recite the Star Spangle Banner!!!! Those percentages are indeed based on the mean/average and unfortunately they are pretty accurate for the MAJORITY of folks, not all, it's what happens in the majority of case in other words. Now that isn't much comfort and I am very very sorry to have to admit that. But PPC is a very aggressive cancer I understand.

Now if you think about averages, there are people on the long term spectrum of that as well and your mom could be one but it isn't likely but I feel compelled to be open and honest with you and not give you false hope.

They are doing what they can it sounds like and my advice to you is basic, enjoy your mother, spent quality time, support, share as much as you can and relish this time together. Make sure you connect with her in ways that you have not before, get to know her, you and her, and ask about her life and the past. Embrace your love for her and know that we are here for support.

When she feels good, take advantage and do things together. Anything you need to know about helping support her, or her treatments, effects, whatever...come here and ask us. This is a really good group of gals that have been through it all, either themselves or with the ones they love.

As a caregiver, your job is far harder than ours. We get to lay around a lot and be pampered and taken care of but who will take care of you. Please always take care of you, be happy, and fulfill your life as you help to console and support your mother along the way. Most of us, while not thrilled with this, have come to certain terms with it and as such just carry on, but the caregiver is far more helpless in that area and I do NOT envy your side on this.

Very nice to have met you and I look forward to seeing your posts in the future.

Kelley

PPC
Hi, I have PPC stage IV and was diagnosed November 2009. I have currently just finished my second line treatment and am feeling really well.

Yes the statistics are very grim for PPC but I have decided not to take any notice of them. I have a friend with PPC who I met as I was diagnosed. She finished her first line treatment 4 years ago and she is still cancer free.

I firmly believe that as long as you can tolerate the treatment (chemo) you can carry on for years. My CA125 has been as high as 1281 before chemo and drops as low as 34. My scans are good. So I consider I am living with this cancer as a chronic condition. This year I have learnt to enjoy my life when I get a chemo break. Its not been easy but the longer you have a "condition" the longer you have to "get used to it" and for me that is working for me.

As far as food goes, try to encourage your mum to eat, even if it is small amounts. There were times when the mere thought of food made me want to vomit but I made myself eat something and do you know ..... the nausea went.

Keep us posted on how things go, Tina xxx

LaundryQueen

Tina Brown said:

PPC
Hi, I have PPC stage IV and was diagnosed November 2009. I have currently just finished my second line treatment and am feeling really well.

Yes the statistics are very grim for PPC but I have decided not to take any notice of them. I have a friend with PPC who I met as I was diagnosed. She finished her first line treatment 4 years ago and she is still cancer free.

I firmly believe that as long as you can tolerate the treatment (chemo) you can carry on for years. My CA125 has been as high as 1281 before chemo and drops as low as 34. My scans are good. So I consider I am living with this cancer as a chronic condition. This year I have learnt to enjoy my life when I get a chemo break. Its not been easy but the longer you have a "condition" the longer you have to "get used to it" and for me that is working for me.

As far as food goes, try to encourage your mum to eat, even if it is small amounts. There were times when the mere thought of food made me want to vomit but I made myself eat something and do you know ..... the nausea went.

Keep us posted on how things go, Tina xxx

Integrative cancer therapy
Millie

You asked about taking vitamins during chemo. There was some research done at Memorial Sloan-Kettering Cancer Center on oral vitamin C taking during chemo. It appears that the cancer cells sucked up the vitamin C and used it to protect itself against the chemo. The standard policy per most oncologists is not to take any vitamins/herbs before chemo or for about 4 days after receiving the chemo.

All that being said, I have been taking intravenous (IV) vitamin C treatments (50Gm dose which is more than can be taken orally) twice/week for months--including immediately before and after chemotherapy with no decrease in the effectiveness of the chemotherapy.

Surprisingly, I was off chemotherapy after only 5 carboplatin treatments (when the standard of care is to give a minimum of 6-8 treatments). Without going into all the details, I have reason to believe that the IV vitamin C treatments help prevent chemo resistance & helps the chemo work better.

I don't have PPC but the ovarian cancer that I was diagnosed with was very aggressive and was spread all over the peritoneum in me before AND after surgery (click on my name in the blue box to read my story).

There are several others besides myself on this discussion board who are going beyond the basic standard of care offered by the oncologists and working with naturopaths or integrative doctors to take advantage of the "best of both worlds."

There is more information about integrative cancer therapy at the web site: www.cancernetwork.com Look at the menu on the left side of the screen. It is best to be under the care of an experienced professional if your mom wants to go "outside the box." I don't know how integrative medicine is handled in Europe, sorry.

Best wishes for you and your mom,

LQ

Millie2011

LaundryQueen said:

Integrative cancer therapy
Millie

You asked about taking vitamins during chemo. There was some research done at Memorial Sloan-Kettering Cancer Center on oral vitamin C taking during chemo. It appears that the cancer cells sucked up the vitamin C and used it to protect itself against the chemo. The standard policy per most oncologists is not to take any vitamins/herbs before chemo or for about 4 days after receiving the chemo.

All that being said, I have been taking intravenous (IV) vitamin C treatments (50Gm dose which is more than can be taken orally) twice/week for months--including immediately before and after chemotherapy with no decrease in the effectiveness of the chemotherapy.

Surprisingly, I was off chemotherapy after only 5 carboplatin treatments (when the standard of care is to give a minimum of 6-8 treatments). Without going into all the details, I have reason to believe that the IV vitamin C treatments help prevent chemo resistance & helps the chemo work better.

I don't have PPC but the ovarian cancer that I was diagnosed with was very aggressive and was spread all over the peritoneum in me before AND after surgery (click on my name in the blue box to read my story).

There are several others besides myself on this discussion board who are going beyond the basic standard of care offered by the oncologists and working with naturopaths or integrative doctors to take advantage of the "best of both worlds."

There is more information about integrative cancer therapy at the web site: www.cancernetwork.com Look at the menu on the left side of the screen. It is best to be under the care of an experienced professional if your mom wants to go "outside the box." I don't know how integrative medicine is handled in Europe, sorry.

Best wishes for you and your mom,

LQ

Wounderful support
Thank you wounderful people for your support!

I can´t find anything like this in Europe and I am very grateful! Now I feel stronger, I take your words on doing all I can for my mum and for myself. To deeper our love and respect for each other under theese circumstances. First thing I will do is to encourage her for eating, small but often, she will as you all say, very much need it.

I am also grateful for statistics in the aspect of "this is average", let´s beat it. And you are all very encouraging in that this might even happen, who knows? And if it don´t for my mum, we did at least fight it. I want her to be a fighter, to find more spirit.

I sample movies on my camera of her grandchildren to show her, I Skype with her as often as I can, we will go to her now on holidays but she doesn´t want the grandchildren to meet her in hospital which is dad. They want and they are 8 yrs and capable of handling the truth.. I also try to be a support for her husband (not my dad).

I will defenitely tell her to think of the cancer as a chronic desease rather than something else. Thank you for sharing that with me.

I and will, as you say, seek some comfort for myself so that I can be there for my mum.

Thank you all for your kindness and see you soon again on the board. May your fight be a good one with many years from now!

Love,
Millie

Tina Brown

Millie2011 said:

Wounderful support
Thank you wounderful people for your support!

I can´t find anything like this in Europe and I am very grateful! Now I feel stronger, I take your words on doing all I can for my mum and for myself. To deeper our love and respect for each other under theese circumstances. First thing I will do is to encourage her for eating, small but often, she will as you all say, very much need it.

I am also grateful for statistics in the aspect of "this is average", let´s beat it. And you are all very encouraging in that this might even happen, who knows? And if it don´t for my mum, we did at least fight it. I want her to be a fighter, to find more spirit.

I sample movies on my camera of her grandchildren to show her, I Skype with her as often as I can, we will go to her now on holidays but she doesn´t want the grandchildren to meet her in hospital which is dad. They want and they are 8 yrs and capable of handling the truth.. I also try to be a support for her husband (not my dad).

I will defenitely tell her to think of the cancer as a chronic desease rather than something else. Thank you for sharing that with me.

I and will, as you say, seek some comfort for myself so that I can be there for my mum.

Thank you all for your kindness and see you soon again on the board. May your fight be a good one with many years from now!

Love,
Millie

Dear Millie
Where abouts in Europe are you from? I am from the UK.

Tina x

eward

My mom was diagnosed
at stage 4 a little over 2 years ago. We were told to avoid the internet statistics. My mom's gyno-oncologist says this is unpredictable. He has seen people he thought would do great who didn't do so well and he has seen people who he thought would go nowhere who are still alive. This is such a difficult place to be.......the unknown.... We are here with you , though.

eward

oh
I forgot to say that my mom was diagnosed at age 62 - close to your mom's age. There are great anti-nausea medicines that have helped my mom quite a bit. Eating protein seems to be important. Trying to keep the focus on what your mom can do today to make her quality of life better might be helpful. There are also great resources out there regarding an anti-cancer diet that you might find at the library or cancer support center, if that is available to you.