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About to stop chemo - how long do others go without treatment

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

Hi to all,

Because Pet/CT scans showed nothing at all, my oncologist has said that I'm to have two more sessions of chemo - my last one next month - before stopping chemo and simply having my CA125 checked by him each 4 weeks after that.

I believe that it is is common for those with peritoneal cancer not to stay off treatment of one kind of another for more than a few months at a time. Maybe some manage to say well for many months.

I would really like to know how long others manage to stay off treatment - chemo or any other treatment, to better gauge what I might expect.

Thanks,

AussieMaddie

daBeachBum's picture
daBeachBum
Posts: 164
Joined: Apr 2011

That sounds really encouraging to me :-) At the same time, I could see it being a concern to you as well.

Since we have much different prognoses (I have primary CRC and your cancer is unknown in origin), the longest I have gone is three weeks (for a vacation).

I did want to check in though and send you loving and healing thoughts and hope you enjoy getting a break from chemo and that you will never need it again!

A wish for negligable CEA numbers and clear scans from here on out for you!

Ray

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

Thank you Ray :)

I really appreciate your words of support. As it is seeems to be generally known in this forum, peritoneal cancer is to be managed, not cured. This will my first time having stopped chemo since I was found to have cancer. I'm really interested to know what is about the averae time people with peritoneal cancer spend "NED" or without need of treatment. (I always forget what NED means exactly but I think it means free of symptoms).

I wish you well also.

Take good care,

AussieMaddie
xxx

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

Hiya AussieMaddie
I was lucky enough to have a chemo break last year between April - October. I have a friend (with PPC)who, in September will have gone 4 years.

It is very variable and depends on the individual and the staging. I am stage IV with mets to the lining of my lungs. So far I finsihed my second round of chemo this year at the end of March (same times as the previous year) and am feeling really well.

I have come to terms with the fact that my cancer can't be cured and I am hopeful it can be managed for years. The only thing I would like to change is the hair loss on chemo. If I coulod keep my hair it would soften the blow.

Take care love Tina xxxx

wanttogetwellsoon
Posts: 147
Joined: Apr 2011

Maddie...
I think NED means 'No Evidence of Disease'. I think it's a case of how long is a piece of string. It's encouraging that Tina's friend went for 4 years. I'd be over the moon if that happened to me. It's really great to hear your news. :)

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

Hi WTGWS,

Sorry to have replied to Tina under your post. I did want also to reply to you too.

Must be chemo brain but I keep forgetting what NED means. I'll write it down so I don't forget. Thank you for your encouragement. I hope that we all go *years* NED.

Take good care :)

AussieMaddie

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

That seems such a long time, Tina. Is it possible that she went so long because the cancer wasn't very advanced to start with - I mean before starting treatment, or might it have been the combination of treatment which she had?

For you to have gone twice about 4 months is good too. I'm sort of expecting to go for about that long. Don't know why. I'm under palliative at present, and they have decided after the scan showed nothing to review my case in six months and if everything is going well at that time, then they'll discharge me from palliative at least until I look like I've got symptoms again. I've lived longer than was expected. I responded much better to the chemo than was expected, so I can't say how long it will be before I must go back on chemo (that's what I would expect them to do since the carbo/taxol worked so well this time) On the other hand, I seem to remember you saying that when you went back on the carbo/taxol the second time, that you had more problems with it, or elsE that it was less effective. Am I right? I know that you've been on other combinations since.

It's great to hear that you are feeling so well after finishing your second round of chemo at the end of March. I do understand what you mean about the loss of hair though I must say that it actually didn't bother me. Don't know why. I know that, like others, when and if I go back on chemo after a break that I'll lose it again. I've had friends make a number of hats for me. I'll be wearing those when I do. My favourite is a black and blue coloured beanie style that was knitted and is so soft to wear. Very good for out winter at present. (You will be in summer, won't you?) One thing I do remember is how good you looked bald. Not everyone can get away with that.

Take good care and enjoy your break from treatment. I hope it lasts for YEARS!

Love and best wishes,

AussieMaddie
xxxx

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I met my friend - Teresa when I had the symptoms but not the diagnosis. Her husband worked with my husband and he said that someone he works with has a wife with the same problems as me. So as a last resort as I was become quite desperate for reassurance and comfort I contacted her. We have been very good friends ever since.

Teresa's story:
She works as a medical secretary to a Lymphoma Oncologist. Her belly had gradually got bigger and bigger over a number of weeks & she didn't know what was wrong. One day her boss said that he thought "there might be something not quite right there" As he was an Oncologist (in another field though) he had his suspicions. So he quickly got her tested and low and behold she was diagnosed with PPC. He was a personal friend of the Gynae Oncologist and went round to his house the same evening to discuss a treatment plan for her. Because of the "seeding effect" PPC has her only option was chemo. She started out with a CA125 of 600ish (I think) and underwent 6x lots of Carboplatin and Taxol. She was staged at 3. She had the fluid drained from her abdomen before starting on the chemo. Like everyone else she felt lousy her hair and felt yukky as she was receiving her treatment. She was able to go into work when and as she felt well enough. She told me that by carrying on working helped to make her feel "normal"

When she completed her 6 rounds her CA125 was into the normal range and she went onto 2 monthly check ups. Her CA125 continued in the normal range and I believe they fluctuated within the teens. After a few months she went onto 3 monthly check ups, then 6 monthly checks and now she is on yearly check ups. In September she will have been free of cancer for 4 years and her lastest CA 125 was 7. She told me the other day that after 5 years she is considered cured.

That is an amazing thing because the general feeling is that PPC is in-curable.

I hope that gives people hope as it surely makes me hopeful, Tina xxxxx

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

Hi Tina,

your friend's story is certainly amazing. I've not heard of anyone else who has gone into remission for so long as to be looking like getting to five years and considered cured. I wonder how often that occurs? Have anyone else ever heard of it happening. As you say, it would give hope to many.

It's always good to hear from you Tina.

Stay well :)

Love,

AussieMaddie
xxx

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