The Colon Club

Hi,

I am from Liverpool England, and i have been on this forum ever since my mother was dignosed with Cancer in April 2015. My mother is 74 75 this year

A bit about my story.

Mother had treatment via Radiothrepy for 6 weeks (July 15) before a operation took place in (October 2015) which removed a 10cm tumour from 7cm inside her rectum. The doctor which performed the operation said the tumour was pretty much a bastard to get it was like chewy when you stick it on the floor and remove it.

Afterwards my mother was put on chemo tablets for 6 months from December 16 - June 16 after this another scan was performed in October 2016 which showed a small tumour by her coxyx stuck to a bone 1.7mm (not bone cancer we have been told) and a small tumour on her pelvis lining 1.2cm which they told her was inoperable, still never staged at this time, was told we don't stage this kind of cancer.

my mother started Chemo via a drip line in Jan 2017 folfox with introcan (they also introduced a drug with them beginning with a C i think its spelt cextium ) after 3 months of chemo another scan it showed both tumours one had gone from 1.7mm to 1.2mm and the other from 1.2cm to 0.7cm, however due to infections and side affects with cextium she was taken off this and the last 4 sessions just chemo was given.

My mother was off the chemo in August 2017 and another scan was reviewed which showed the cancers had stabled no growth in them, we was told we are re looking at operating on the tumours, unfortunately just after being told this my mothers henria twisted and she spent 8 weeks in hospital and had to have a op to fix it.

My Mum had a scan about 4 weeks ago, we went to see the surgeon last week, he told us the tumours had grown slightly and the operation was too dangerous to perform, they would need to take a section of bone away and couldn't be certain the cancer would not come back also her quality of life wouldn't be the best if she survived the operation.

Today we have been told its locally advanced inoperable stage 4 cancer ? but we told in October it was operable ( i think not doing a operation on her has something to also do with the henira) he said its stage 4 because they cant operate on the tumours however my mother has not signs of cancer or mets anywhere else in the body apart from where the orinigal tumour was, i do think the tumour on her/by coxyx was never removed fully anyway.

Mum is due to start on the same chemo as above without the added drug from last time in 3 weeks time. I did ask if there was anything else she could have and he said no.

We are due to see him again in five weeks so if anyone could help me with trails or why my mum is having folifox with introcan and not folixfox with avastin what is the difference ? it would be a great help to me.

he said she could have 6 months she could have 6 years who knows. (my mother has also started taking vitamins C and E Cannabis Oil with high THC minerals and tumruic tablets

sorry about some spelling mistakes not use to a mac and how to fix them.


Thank You all, you have all helped me over the years knowing anything can be beat

If I am not mistaken, "locally advanced" for Rectal Cancer means it the cancer has penetrated the rectum muscles. It does not need to go to distant areas for it to be considered "locally advanced stage 4"

I have taken Folfox with Avastin
I also have taken Irinotecan as a single agent but not in combination.
I am not a doctor but if your doctor is combining Iri + Foxlfox, it seems a lot more aggressive chemo regimen.

Just to answer your question on the drugs...
FOLFOX - Standard care for colon cancer - Chemo drugs which is flouracil - leucovorin and the heaviest one which is Oxaliplatin
Irinotecan - Also a chemotherapy drug - cytotoxic drug which means it kills cells which are dividing
Avastin - this is a targeted drug which means it specifically targets a certain "thing" - much less side effects.

Perhaps they have a different standard of care for rectal cancer?

Do they know what the gene mutation is? That could be a clue as to what clinical trials might be available. I do not know how that stuff works in England but some of the trials in the US are based off of the mutation.

some808guy wrote:If I am not mistaken, "locally advanced" for Rectal Cancer means it the cancer has penetrated the rectum muscles. It does not need to go to distant areas for it to be considered "locally advanced stage 4"
All we have ever been told was she as a tumour on pelvis lining and that they are slow growing cancers

I have taken Folfox with Avastin
I also have taken Irinotecan as a single agent but not in combination.
I am not a doctor but if your doctor is combining Iri + Foxlfox, it seems a lot more aggressive chemo regimen.

Yes this is what she had last time which seem to work with the added target drug

some808guy wrote:Just to answer your question on the drugs...
FOLFOX - Standard care for colon cancer - Chemo drugs which is flouracil - leucovorin and the heaviest one which is Oxaliplatin
Irinotecan - Also a chemotherapy drug - cytotoxic drug which means it kills cells which are dividing
Avastin - this is a targeted drug which means it specifically targets a certain "thing" - much less side effects.

Perhaps they have a different standard of care for rectal cancer?

NHMike wrote:Do they know what the gene mutation is? That could be a clue as to what clinical trials might be available. I do not know how that stuff works in England but some of the trials in the US are based off of the mutation.

I think it’s not a mutation gene which he said was a good sign in October 16

Is there any questions I could ask him in five weeks when I see him ?

Sorry it’s

folfiri With irinotecan

Smiggs wrote:

NHMike wrote:Do they know what the gene mutation is? That could be a clue as to what clinical trials might be available. I do not know how that stuff works in England but some of the trials in the US are based off of the mutation.

I think it’s not a mutation gene which he said was a good sign in October 16

Is there any questions I could ask him in five weeks when I see him ?

I think the biggest thing you can ask your doctor in my opinion is to find out what his/her treatment plan" is...
From here, you as your mother's advocate can decide if this is the right path for her. If it is, then good. If not, second opinions never hurt.

For example, is the doctor just planning for palliative care? Or does he have curative intent for her?

I would start there. Then after getting the general idea of what the plan is, only after then would I start looking into the technicalities and science behind the drugs. It breaks the overwhelming information into smaller chunks that would be understandable

some808guy wrote:

Smiggs wrote:

NHMike wrote:Do they know what the gene mutation is? That could be a clue as to what clinical trials might be available. I do not know how that stuff works in England but some of the trials in the US are based off of the mutation.

I think it’s not a mutation gene which he said was a good sign in October 16

Is there any questions I could ask him in five weeks when I see him ?

I think the biggest thing you can ask your doctor in my opinion is to find out what his/her treatment plan" is...
From here, you as your mother's advocate can decide if this is the right path for her. If it is, then good. If not, second opinions never hurt.

For example, is the doctor just planning for palliative care? Or does he have curative intent for her?

I would start there. Then after getting the general idea of what the plan is, only after then would I start looking into the technicalities and science behind the drugs. It breaks the overwhelming information into smaller chunks that would be understandable

Hi in 2016 it was just palliative care ? As they said it was inoperable but 12 months later it was and they shrunk the tumours, my mother will never turn down chemo, he said she is incurable ??? So he can’t go with a curative plan ?

Smiggs wrote:Hi,

. . . after this another scan was performed in October 2016 which showed a small tumour by her coxyx stuck to a bone 1.7mm (not bone cancer we have been told) and a small tumour on her pelvis lining 1.2cm which they told her was inoperable, still never staged at this time, was told we don't stage this kind of cancer.

. . . they would need to take a section of bone away and couldn't be certain the cancer would not come back also her quality of life wouldn't be the best if she survived the operation.

Have they talked to you or your mom about treating the bone met with radiation. It has been effective for many people. Cutting the bone seems dangerous to me.

Is your mom being treated at a major cancer treatment center or major cancer hospital? If not, you might want to look into it. At the very least get some 2nd opinions from major cancer treatment center.

good luck,

Lee

Lee wrote:

Smiggs wrote:Hi,

. . . after this another scan was performed in October 2016 which showed a small tumour by her coxyx stuck to a bone 1.7mm (not bone cancer we have been told) and a small tumour on her pelvis lining 1.2cm which they told her was inoperable, still never staged at this time, was told we don't stage this kind of cancer.

. . . they would need to take a section of bone away and couldn't be certain the cancer would not come back also her quality of life wouldn't be the best if she survived the operation.

Have they talked to you or your mom about treating the bone met with radiation. It has been effective for many people. Cutting the bone seems dangerous to me.

Is your mom being treated at a major cancer treatment center or major cancer hospital? If not, you might want to look into it. At the very least get some 2nd opinions from major cancer treatment center.

good luck,

Lee

We only really have one in England trying to save the 2nd opionon for a rainy day, that’s why I have come on here you Americans are so far advanced and know what you are talking about.

You all can help me have questions when we see him in 5 weeks

Smiggs wrote:We only really have one in England trying to save the 2nd opionon for a rainy day, that’s why I have come on here you Americans are so far advanced and know what you are talking about.

You all can help me have questions when we see him in 5 weeks

Stage IV is the rainy day!!

You want to do everything you can at this end NOW to help prevent further progression. You want a team of expert who deal with cancer every day. Do you just see just one doctor or a team of doctors. Oncologist, surgeon, etc. If just one, what type of doctor. To the best of my knowledge, radiation is the best way to treat a bone met. That would be my question, why not radiation.

Don't wait until she's in hospice to get that 2nd opinion. That is my advice,

Lee

Lee wrote:

Smiggs wrote:We only really have one in England trying to save the 2nd opionon for a rainy day, that’s why I have come on here you Americans are so far advanced and know what you are talking about.

You all can help me have questions when we see him in 5 weeks

Stage IV is the rainy day!!

You want to do everything you can at this end NOW to help prevent further progression. You want a team of expert who deal with cancer every day. Do you just see just one doctor or a team of doctors. Oncologist, surgeon, etc. If just one, what type of doctor. To the best of my knowledge, radiation is the best way to treat a bone met. That would be my question, why not radiation.

Don't wait until she's in hospice to get that 2nd opinion. That is my advice,

Lee

Yes we have an oncologist and a surgeon. I have asked if there is mets and they have said no, I think
The tumour which is attached to the bottom of the cozy is the oringal tumour which they didn’t get all
Of.. I will ask this question when we see him
In five weeks if he refuses I will
Ask
For a second opinion nhs over here don’t give a shit if your old just someone else off there’s and the governments books in my eyes

Smiggs wrote:
The tumour which is attached to the bottom of the cozy is the oringal tumour which they didn’t get all

For a second opinion nhs over here don’t give a shit if your old just someone else off there’s and the governments books in my eyes

You can ask the question, butt if it is not a bone met, than radiation will not help. Somehow I got the idea it was a bone met.

Am I correct to assume, you can only get one 2nd opinion? Are you allowed to get treatment at a cancer hospital? I will admit I'm a bit confused how your medical system works.

You and your mom will be in my thoughts and prayers.

Lee