new treatment

finner · April 2006

Hi all
Have just learnt that i will be starting a new treatment next week. Weekly dose of Erbitux and irinotecan. So i'll be bald with a rash. yuk! Had a hard time this w/end coming to terms with the fact that lung mets have increased activity. I know that the aim is to stay positive and up tp now, i have been able to do this. Now when somebody askes me how I am, I want to tell them exactly how I am, but just say "fine". Up to now I hadn't told anybody(sisters, brother, mother) about lung mets.but this weekend, told my big sister, who lives in another country. She is now constantly on the phone, with advice that she gleans from the internet. I know that she means well, but it kind ofu psets me. I have been trawling the internet myself since dx in oct 2004. I do have a very supportive boyfriend in that I can tell him exactly how I feel, but soometimes I feel its such a burden for him, being the only one that i share this with. Oh and a very good girlfriend, whom I have known for 30 years and who comes to all my sessions with me and who chases the docs for me to get information. Anyway this w/end I just felt so poisoned (had 7th round of folfox)and i am beginning to question the quality of life versus quantity thing. I have 3 children from 20 down to 12 and i have to keep battling for them. However I feel that I am distancing myself from them, kinda getting them more independent, just in case. This new treatment is palliative, I think. Possibly some shrinkage. I just dunno. This is why this board and all of you are so great. Nobody else can really feel what I feel.I asked my oncologist if he would be able to give me a survival time, if I should feel the need to know this at some stage. He said that he would, given certain caveats, but we both agreed that this would be a very negative thing to do. Now I am thinking that if he can know this, it makes me terminal.

Thanks for listening. Any advice re keeping sunny side up?

Love and best wishes to you all.

(surgery is not an option for either lung or liver mets as they are too numerous )

Btrcup · April 2006

Margo, I'm sorry to hear your news. I can only say keep your spirits up. You will be in my thoughts.

Linda

midnte0708 · April 2006

Don't read too much into the doctors offer of opinion of survival time. Only God knows how much time everyone has. I hear about too many people who have been given for example 6 months to live and they are still around many YEARS later.
Everyday there are new treatments coming out and everyones case is different.

Anyway, good luck with your new treatment and I hope you respond well to it with minimal side effects.

Sue

KathiM · April 2006

midnte0708 said:
Don't read too much into the doctors offer of opinion of survival time. Only God knows how much time everyone has. I hear about too many people who have been given for example 6 months to live and they are still around many YEARS later.
Everyday there are new treatments coming out and everyones case is different.

Anyway, good luck with your new treatment and I hope you respond well to it with minimal side effects.

Sue

I FIRMLY agree with Sue.
NO ONE has been able to calculate the TRUE effect of the human spirit!!!!
That said, I also think that your onc is hedging his/her bets...doesn't want to present ANYTHING that will open to lawsuit (sigh, sign of the times, alas!).
My advice is twofold.
First, (which you are already doing, wise lady) is to make sure, should the unthinkable happen, that your kids are taken care of, etc (I revised my will, etc right after dx...I have 2 special needs kids).
Second, and MUCH MORE IMPORTANT(!!!). Find something EVERY DAY to laugh about. No, I'm not saying be artifically happy, just laugh at least once a day. (If nothing else, everyone ELSE will wonder about ya...LOL).
See? There is your laugh for today.
Hugs and vibes to you,
Kathi

NanD · April 2006

Hi-just wanted to tell you about my friend Ann. She had stage IV thirty years ago. She had it in her liver, had three children...all they had to treat her with in those days was oral 5 FU. She supplemented with a heavy dose of prayer and positive attitude and is now the leader of my church's cancer club. She was told she had no chance...Hang in there!

Betsydoglover · April 2006

Hi - This is really tough, but try not to dwell on the survival time issue. As others have said, no one can know and there are SO many exceptions. Also, by nature, if asked, your physician is likely to be very conservative (lawsuit issues? basic nature of physicians?) and you really don't need that kind of prediction, for it will be based on statistics and not really on you.

You are thinking about your kids' futures and that is great. But also focus on yourself, try to have some fun, believe you WILL get through this new chemo regimen and move on to a better, healthier life. I'll be rooting for you!

Betsy

Unknown · April 2006

Just wanted to add some more positive notes and tell you also about a friend of mine. Although she did not have colon cancer, she had ovarian cancer at a time (almost 22 years ago) when there really was very little they could do for her. Infact, they didn't expect her to survive much beyond her operation. She had two small children and had just lost her husband three years earlier to stomach cancer. Needless to say, that was 22 years ago and she's still with us today, cancer free and going strong. Also, my mom who wasn't given much of a chance beyond six months for inoperable lung cancer made it over three years of quality life and left us as a result of pneumonia, strong up to the very end.

Everyone is so right. No mere mortal can truly predict anything with any sort of accuracy, be it good or bad. They can only guess based upon their experience and generality. But what gets lost here is that every person is unique and an individual and what may apply to the majority/minority may not apply to you.

Hang in there, stay strong, and keep the faith.

Hugs,
Monika

pink05 · April 2006

Hi,

My father has stage IV colon cancer. When he was first diagnosed, I got so caught up in statistics. It started to drive me so crazy that I forced myself to stop listening to all the numbers and I reminded myself that it is in God's hands. Even my dad's onc told us that my dad has 2-3 maybe more years. That wasn't too encouraging for me and made me sort of angry that he would tell us that. I know that those numbers are always in the back of my dad's mind. I don't think doctors should volunteer that info. unless someone really wants to know their opinion. I know and have heard of many people who were told how much time they had and they have well surpassed those numbers. Keep fighting and don't focus so much on all those stats. You are an individual, not a statistic.

God Bless,

-Lee-

pink05 · April 2006

NanD said:
Hi-just wanted to tell you about my friend Ann. She had stage IV thirty years ago. She had it in her liver, had three children...all they had to treat her with in those days was oral 5 FU. She supplemented with a heavy dose of prayer and positive attitude and is now the leader of my church's cancer club. She was told she had no chance...Hang in there!

Wow!!!

Thirty years ago? That is such a wonderful story. Very encouraging. Prayer really does work!!! So much for statistics!

kangatoo · April 2006

pink05 said:
Hi,

My father has stage IV colon cancer. When he was first diagnosed, I got so caught up in statistics. It started to drive me so crazy that I forced myself to stop listening to all the numbers and I reminded myself that it is in God's hands. Even my dad's onc told us that my dad has 2-3 maybe more years. That wasn't too encouraging for me and made me sort of angry that he would tell us that. I know that those numbers are always in the back of my dad's mind. I don't think doctors should volunteer that info. unless someone really wants to know their opinion. I know and have heard of many people who were told how much time they had and they have well surpassed those numbers. Keep fighting and don't focus so much on all those stats. You are an individual, not a statistic.

God Bless,

-Lee-

Margo...there are a lot of responses here with news of long term survivors...so here's another. You may recall me saying my friend Janette died recently....but that was after beating her cancer for 7 years!My dear friend Alan is still fighting 6 years after his original "terminal" dx. Although he has a form of leukemia the changes in meds. available and a healthy outlook re; diet, excercise etc. has kept him going all these years.Just recently he stared to go downhill very badly and his wife, Carlene asked me to speak with him. It turned out he was in a state of depression...something we all get. Speaking from experience I convinced Alan to seek professional counselling and referred him to my cancer clinic.He was a little apprehensive as he had NEVER discussed his illness openly. Margo!!!When I phoned back a few days later Carlene told me Alan had improved 100%....he had answers to the questions he never wanted to ask.He is now walking again, eating, smiling...and even shouting at his dog! There is absolutely ever reason to treat our minds as well as our bodies.
You asked Margo..."Any advice re keeping sunny side up?
Seek out a "cancer clinical pshycologist"....it worked for me...it certainly helped my friend Alan!They are trained to "listen"...something we sometimes need is someone to talk to that is non-judgemental, compassionate, someone outside of our immediate circle. A bit like the guys n gals here on CSN.
Huggs gal, Ross n Jen

jenalynet · April 2006

I hope your new treatment goes well for you. Please...please keep fighting..You will be in my thoughts and prayers..Audrey

joanneire · April 2006

Dear Margo

Please keep positive. If you feel like meeting up for a cup of coffee or a walk at anytime please let me know. I really believe that cancer feeds on negativity and it's therefore important for your psychological and physical health to stay strong. Please email me if you would like to talk further.

Take care and I will be thinking of you.

Joanne

finner · April 2006

Hi everyone
Thanks for all the replies. I actually do feel better now about it all. I have delayed starting the new treatment for a week because I am going away for a few days next week and want to feel grrrreat! Don't think I need any counselling just yet, but will certainly keep it in mind. Good to hear all your stories about beating the odds. Thats my plan now.

Margo

new treatment

Comments

Discussion Boards