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by Siti
Mon Feb 12, 2024 8:32 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: To set a goal or not set a goal; that is the question.
Replies: 7
Views: 1356

Re: To set a goal or not set a goal; that is the question.

For us, it depends what the goal is. Holiday trips, marathons, a new hobby, buying a car/boat, celebrations etc is a no brainer… We went for it. For bigger commitments like buying a house, we hesitated in the first 2 years but decided to go for it, we ended up buying 2 properties in 2 different coun...
by Siti
Fri Jan 12, 2024 3:31 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Gee it’s quiet here huh…
Replies: 18
Views: 4255

Re: Gee it’s quiet here huh…

Howdy strangers! All is going well in my neck of the woods. Nicholas will be *5* in March. He starts school this fall. Idk what I'm going to do with myself. And to think, at one point we didn't think either of us would survive to even meet. Time is flying by and I'm savoring every minute of it. I h...
by Siti
Fri Jan 12, 2024 3:23 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: MSS + TMB-High Immunotherapy
Replies: 17
Views: 2220

Re: MSS + TMB-High Immunotherapy

I have read some stories of people having some success on immunotherapy with widespread metastasis, but most of the immunotherapy trials we’ve looked at exclude those with liver metastasis in particular (including bot/bal) because the therapy has not worked for them. The results seem best for those...
by Siti
Tue Jan 09, 2024 5:41 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: MSS + TMB-High Immunotherapy
Replies: 17
Views: 2220

Re: MSS + TMB-High Immunotherapy

Europe has not approved immunotherapy for high TMB so it will have to be within either a test study or trial. I feel like there’s so much of politics even in the world of saving lives. Urg! Anyway let’s see how it goes the next months. I really hope we get some good news soon… my poor husband has be...
by Siti
Tue Jan 09, 2024 5:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: MSS + TMB-High Immunotherapy
Replies: 17
Views: 2220

Re: MSS + TMB-High Immunotherapy

Where is his disease currently? He spoke with his oncologist today and she said there are many options on the table but first, he’ll continue maintenance chemo (TS1 + Bev) until the next PET scan in 2-3 weeks. If there is no new tumours, he will continue maintenance but if there is, then back to Ox...
by Siti
Tue Jan 09, 2024 5:13 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: MSS + TMB-High Immunotherapy
Replies: 17
Views: 2220

Re: MSS + TMB-High Immunotherapy

Of course the bot/bal trial is randomised too, including a rego/Lonsurf control (which I wouldn’t normally suggest doing), so it’s not a guaranteed novel treatment - may want a plan B for this case anyway. I really need to get up to speed with the terminology of trials. Does randomised trial mean t...
by Siti
Mon Jan 08, 2024 9:08 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: MSS + TMB-High Immunotherapy
Replies: 17
Views: 2220

MSS + TMB-High Immunotherapy

Inspired by @Jack&KatiesMommy journey, I asked my husband’s oncologist if we could do another genome sequencing for my husband’s recent recurrence. CEA was never an indicator for him but since spring last year it was. I suspect it could be due to mutations and interestingly, his results came bac...
by Siti
Mon Jan 08, 2024 8:43 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Loose stools
Replies: 5
Views: 2094

Re: Loose stools

I can eat something and within MINUTES I have diarrhea. How can food travel that fast? How can I slow down my stomach to act normal? Thank you I think eating triggers the entire GI track. It’s the same with my husband and it seems like a permanent problem. He takes Imodium at the beginning of the d...
by Siti
Fri Jan 05, 2024 5:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Growth whilst off treatment
Replies: 8
Views: 4480

Re: Growth whilst off treatment

I was just wondering if anyone had experienced that specifically. Usually in my partners case the growth has been slow whilst off treatment and waiting for surgical interventions, but during the latest progression it seemed to grow quickly whilst waiting for chemo to restart. He’s responding though...
by Siti
Fri Jan 05, 2024 7:32 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Sigmoid + Distant Lymph Nodes
Replies: 33
Views: 8188

Re: Sigmoid + Distant Lymph Nodes

Hey everyone, First of all, Happy New Year! I hope that you had a good break during the holidays with your loved ones :) We just got back from the hospital, quick update on my husband: - He had a PET scan on 7 Nov (after a lot of persuasion). Good & bad news: the radiotherapy worked very well, t...
by Siti
Fri Jan 05, 2024 7:04 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Neuropathy from FOLFOX?
Replies: 11
Views: 2332

Re: Neuropathy from FOLFOX?

Hey all, Happy new year for everyone and hope everyone had a good Christmas Question I'm on 8/12 Folfox cycle. I've noticed some slight pain in my fingers. I'm assuming this is neuropathy? But my question is- will this get worse? And so , will it be permanent? is that why they reduce the dosage? At...
by Siti
Fri Jan 05, 2024 6:51 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Gee it’s quiet here huh…
Replies: 18
Views: 4255

Re: Gee it’s quiet here huh…

Hi Rob,

Glad to hear you're feeling better and I pray that your current treatment works well again.
I hope you had a good break during the holiday season and wishing you and yours a Happy New Year!

Looking forward to hear good news from you.

Best wishes,
Siti
by Siti
Fri Oct 13, 2023 4:55 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Sigmoid + Distant Lymph Nodes
Replies: 33
Views: 8188

Re: Sigmoid + Distant Lymph Nodes

A ‘blurry’ CT sounds more like bad radiography than anything else to me… however I’m guessing they weren’t rushing to offer to repeat the imaging? Overall my rad onc said interpreting response to radiotherapy - particularly to non-visceral targets like lymph nodes - can be a bit of an art form whic...
by Siti
Fri Oct 13, 2023 4:46 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keeping good bloods/healthy during treatment
Replies: 8
Views: 1354

Re: Keeping good bloods/healthy during treatment

It seems like he’s already at his best. Is he still on heavy chemo or maintenance? When my husband was on oxaliplatin, his blood work wasn’t good and liver enzymes were all in the red. It only got back to normal levels about 1.5 years post oxaliplatin (he was still on capecitabine then TS-1). He sto...
by Siti
Thu Oct 12, 2023 4:58 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Sigmoid + Distant Lymph Nodes
Replies: 33
Views: 8188

Re: Sigmoid + Distant Lymph Nodes

Over the past few months, we've faced significant challenges within the Dutch healthcare system. To put it politely, it has been a frustrating and disorganized experience. During this time, my husband encountered various temporary doctors due to the summer holidays, leaving us with no choice but to ...

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