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by Lydia666
Thu Dec 20, 2018 10:08 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 129
Views: 27490

Re: Keytruda....Working for MSS....Mutation Burden is the Key

i wanted to give you all an update on my off-label use of Keytruda (since I am MSS it is not approved for use by me....since it doesn’t generally work for colon cancer patients which microsatellite stable tumors.) HOWEVER, it looks like it is working for me....and here is the reason why (according ...
by Lydia666
Sun Dec 16, 2018 3:56 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone deal with lymphedema after colon cancer??
Replies: 7
Views: 2144

Re: Anyone deal with lymphedema after colon cancer??

I have severe lymphedema and no strength in legs, cannot get out of bed. How do i get my strength back? How do i deal with this out of body experience that my body makes me? Anyone ever felt like the body is not theirs because of the disease, etc? I just can't explain it.can anyone? I dont want to d...
by Lydia666
Tue Dec 04, 2018 7:33 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lymphedema
Replies: 8
Views: 872

Lymphedema

Doing really poorly friends. I have developed lymphedema in legs, it is awful , can hardly walk. I also have nephrostomies in place since my kidneys got blocked by cancer. I am in an awful state , still at the. Hospital until Friday possibly. I miss my babies , i need to be home. What's the treatmen...
by Lydia666
Tue Oct 16, 2018 2:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Quality of life on Folfox and others
Replies: 20
Views: 4672

Quality of life on Folfox and others

Friends, who can tell me if the quality of life of various chemo protocols is still reasonable.

How terrible is living with neuropathy? What are the nastiest side effects?

Thanka.
by Lydia666
Sun Oct 14, 2018 9:37 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone with peri mets who survived?
Replies: 22
Views: 5533

Re: Anyone with peri mets who survived?

Hi Lydia - I just wanted to add that I am in the exact situation as you. This upcoming Friday I will be having cytoreductive surgery with HIPEC. The replies to your post give me optimism. Both my onc and surgeon have told me that this is still very much curative. Wishing you the best. Have you had ...
by Lydia666
Sun Oct 14, 2018 7:48 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need Support - Told today I'm on Palliative Care
Replies: 29
Views: 6639

Re: Need Support - Told today I'm on Palliative Care

Diagnosed in late May with Rectum Cancer, spread to ovary. Then came diagnosis of colorectal cancer (sigmoid almost completely cancerous), with adenocarcinomas to rectum and ovary. Then came possibly of two separate cancers - colorectal and ovarian. Second opinion determined no ovarian cancer. Also...
by Lydia666
Sat Oct 13, 2018 6:17 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Friends, i am struggling, news of cancer are awful
Replies: 16
Views: 3206

Re: Friends, i am struggling, news of cancer are awful

I recently went through the same thing. Were they able to remove all of the cancer in surgery? I just had cytoreductive surgery. Everything was removed but chemo does not help according to my doc. Is HIPEC an option? The surgery i had was unblock my intestines. All cancer is still inside. Hipec mig...
by Lydia666
Thu Oct 11, 2018 4:02 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Friends, i am struggling, news of cancer are awful
Replies: 16
Views: 3206

Re: Friends, i am struggling, news of cancer are awful

Thank you Larry. You ve lived 1.5 years already since diagnosis. This gives me hope!!
by Lydia666
Wed Oct 10, 2018 11:05 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: LovemyAmeliasky- are you there?
Replies: 0
Views: 1643

LovemyAmeliasky- are you there?

Amelia's mom,
Are you there? I am in your shoes as of a few days, how are you holding up?
My big daugther's name is Amelie.
Love to you! Please write if u can,i d love to be in touch.
Laura (lydia666)
by Lydia666
Wed Oct 10, 2018 10:47 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Friends, i am struggling, news of cancer are awful
Replies: 16
Views: 3206

Re: Friends, i am struggling, news of cancer are awful

Thank you. I am flat on the floor by the news. Like a plane went thru me. I ll try to check opinions for hipec. Understanding is for now, not an option. If i get home in a few days, it s miracle. If i can start chemo in a couple weeks, miracle. Please send ANY positive story my way Lots of love Laur...
by Lydia666
Tue Oct 09, 2018 12:28 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Friends, i am struggling, news of cancer are awful
Replies: 16
Views: 3206

Friends, i am struggling, news of cancer are awful

I ve had emergency surgery to unblock my intestins, i have a stoma,i am relieved in that way. I am trying to recover, to start eating and go home to my babies. But i have cancer extensively in my peritoneum, on the intestins, they saw lots of disease when they opened me up. Obviously this is devasta...
by Lydia666
Wed Oct 03, 2018 2:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone with peri mets who survived?
Replies: 22
Views: 5533

Anyone with peri mets who survived?

I have local recurrence with peri mets. I am so discouraged. Please help!!
by Lydia666
Tue Oct 02, 2018 6:07 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Such a blow!
Replies: 9
Views: 1806

Re: Such a blow!

After the colonoscopy i had liquid stool and i tookk immodium for a week which commpletely shut down my intestins. Have not gone to the bathroom since.i came to the emergency for constipation,they did a scan and saw cancer at the surgery site on the outside of the colon.
by Lydia666
Mon Oct 01, 2018 5:21 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Such a blow!
Replies: 9
Views: 1806

Such a blow!

So i found out today that my colon cancer is back, a tumor on the outside of colon and lymphnodes, dont know exactly where. This is awful! Has someone on here survived this?

Thank you for any encouragement!
by Lydia666
Sun Sep 16, 2018 7:56 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Problems post-colonoscopy
Replies: 2
Views: 625

Problems post-colonoscopy

Hi everyone,
I had a colonoscopy 2 weeks ago. For the first time i tried the protocol of 2 sachets of pico-salax which seemed easier than the 4liters of golytly but i've been having constant diarhea since!! I am sick of it. Has this happened to anyone and what did you do?
Thank you.

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