Recurrence Questions

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FindTheBestHelp
Posts: 92
Joined: Mon Jul 14, 2014 12:13 am

Recurrence Questions

Postby FindTheBestHelp » Tue May 01, 2018 10:28 pm

As a brief recap, due to finding a mass in the right side of abdomen during a CT Scan 2 weeks or so ago, the surgical board met and reviewed the scans and determined that the surgeon is able to remove the mass (1cm x 3cm), but they want to have a PE Scan done tomorrow and review the scans to make sure that is the only cancer detected and everywhere else from head to shins are clear. It's not clear whether it includes the brain or just up to where the spin and skull meet.

Provided the PET Scan comes back clear everywhere except the right side of abdomen (same as CT Scan), a meeting will take place with the surgeon to discuss the situation and plan of action for surgery (remothe mass from abdomen). The oncologist is not talking about chemo treatments afterwards.
She doesn't seem to believe going back to FOLFOX chemotherapy will be an option, because the fact that another mass has formed some 3 years later seems to indicate to her that this recurrence brings a more resistant cancer and the same FOLFOX regimen won't work.
I'm skeptical about this because I've heard of people who originally were diagnosed with colon cancer, had operations, had 6 months or so of chemo, and years later found a met in the liver, had an operation to remove it and have been on maintenance chemo ever since.. and it's been over 10 years+ total since original diagnosis, operation and chemo for them and they are doing well.

If the PET Scan tomorrow _does_ pick up something else, I'm not sure where options that leaves... as it complicates matters, depending on what it picks up and where.

So I have a few questions:

1. Is it true that if you were on FOLFOX for initial chemo treatments and there's a recurrence that it means FOLFOX will not be effective on a second time around several years later? What about other, newer chemo drugs?
2. If there is a recurrence, does that automatically mean the cancer comes back even more aggressively and rapidly than the initial colon cancer several years earlier, dealt with using surgery and chemo?
3. The oncologist also mentioned about 10% of people qualify for an immunotherapy because of a certain protein. She said if after removing the mass and with close monitoring thru blood tests and scans in the months ahead, if something else appears, we could opt for immunotherapy.
But I'm wondering - Why can't they put you into immunotherapy after a recurrence and a surgery to remove the mass from the recurrence? Why wait and monitor, knowing there could be microscopic cancer floating around in your blood? Does immunotherapy not attack those or are they too small?
4. What is the current state of immunotherapy and how successful is it so far? If you respond to immunotherapy, does that mean you're in the clear? or is it possible for cancer cells to become immune to that therapy too?

Thanks in advance for any information regarding the above that you can share!

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Recurrence Questions

Postby NHMike » Wed May 02, 2018 9:44 am

I'm still in the initial treatment cycle so I don't have personal, long-term experience but there are lots that do. You are asking research questions to some degree and looking at papers might help if you have access to them.

Immunotherapy is fairly limited. The body has repair systems for genetic mutations and they go by DNA Mismatch Repair. Some people are missing one or more of the mechanisms for Mismatch Repair and they are said to be Microsatellite Instability - High. And this means that they are likelier to get cancer and at earlier ages than the general population. The drugs to treat cancers as a result of this are Keytruda and Opdivo and I think that they were approved in 2017. Recoveries can be quite remarkable and complete but the drugs also might just mean that you can take the drug and the tumors don't grow. The former was something that I read in an article about a little girl who received it, nearly died from an autoimmune reaction, and then they gave her immunosuppresents, she woke up and was cured. There are some folks here with Lynch Syndrome with is MSI-High that may be able to comment on their experiences with Keytruda.

Most colorectal cancers are of the type where the gene mutation is inside the cell. Immunotherapy works by targeting antigens on the cell surface. So it requires some sort of indicator on the cell surface that the cell is a cancer cell to kill it. Our level of science is that we cannot do this in the vast majority of cases. And this is why we use chemotherapy that attacks all of your cells instead of the targeted chemo that just attacks the cancer cells. There are some trials at NCI with specific gene mutations where some people have alleles that will bring the mutations to the cell surface so that immunotherapy will work - and this is without MIS-High. But those cases are rare in the gene mutations that they are looking at and they only are taking Stage 4 patients. There are some people here that have done really well with this on this board and some in trials or going into trials.

There are other drugs too that are being used - some in trials and some because Oxaliplatin isn't tolerated well. I am not really up on those.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

FindTheBestHelp
Posts: 92
Joined: Mon Jul 14, 2014 12:13 am

Re: Recurrence Questions

Postby FindTheBestHelp » Wed May 02, 2018 9:54 am

Thank you for explaining. This is very helpful.

I'm not sure why the oncologist has not mentioned some sort of maintenance chemo after this recurrence (should the only thing found be the 1cm x 3cm mass in the abdomen and nowhere else), either the same FOLFOX or some other treatment. She said FOLFOX was the best known method right now.

stu
Posts: 1614
Joined: Sat Aug 17, 2013 5:46 pm

Re: Recurrence Questions

Postby stu » Wed May 02, 2018 10:59 am

Hi ,
I can share my mum’s experience of recurrence but it is purely that .
No 1 . We were told that if she could get six months between first line chemotherapy then she could have it again . Her cancer responded well both first and second time using the same chemotherapy .
No 2. My mum’s cancer recurred but remained the same cell type , they had not mutated and therefore responded well to the same drug and did not present more aggressively . She also had a lung recurrence seven years after her initial diagnosis . It was slow growing compared to the liver but again it remained the same cell type. I would imagine this would be individual with lots of variables .
Hope it helps ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .


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