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by RulaLenska
Fri Nov 16, 2018 8:38 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 26
Views: 6950

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

Thank you Cynthia for the feedback. I’ve heard from two others on Keytruda who also say that fatigue is their only side affect. You sound like a real dynamo so I wonder if any treatment would slow you down!
Best wishes,
Cyn
by RulaLenska
Fri Nov 16, 2018 8:31 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Sleeping with: bag, heart monitor and pump accached
Replies: 9
Views: 395

Re: Sleeping with: bag, heart monitor and pump accached

I feel for you. I’m a stomach sleeper usually but never in the last two years. A good mattress is the place to start unless you have a recliner. As needed I’ve used pillows for bracing and pressure relief. I’ve adjusted to this but I long for the day when I can spread out on my stomach. Good luck fi...
by RulaLenska
Wed Nov 14, 2018 9:51 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 26
Views: 6950

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

I just found out after an appeal that I will be receiving Keytruda. I’ll be getting schedule details in the next day or two. I’m pretty excited/nervous about this. I haven’t had any treatment since May when I started preparing for liver resection. Cynthia (my name also!) I am interested in your expe...
by RulaLenska
Sun Nov 11, 2018 2:03 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: RED, irritated face with Irinotecan + Vectobix
Replies: 6
Views: 236

Re: RED, irritated face with Irinotecan + Vectobix

My Onc prescribed doxycycline and a 1% hydrocortisone cream 2 weeks before I even started irinotecan/vectibix. I also used sunscreen religiously because ANY amount of sun exacerbated skin issues. Pay extra attention to the cuticles...no picking, pulling, or cutting. Very painful fissures can occur a...
by RulaLenska
Fri Oct 19, 2018 10:45 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 26
Views: 6950

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 RulaLenska
Tue Sep 18, 2018 7:53 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Triggers
Replies: 4
Views: 644

Re: Triggers

Speaking generally, a rise in body inflammation will tend to an increase in how neuropathic pain is experienced. Karen I am aware of the increase from inflammation but hadn’t heard of an increase triggered by anesthesia. Pronounced and prolonged. I’m really hoping for a decrease. Fingers crossed Cyn
by RulaLenska
Tue Sep 18, 2018 7:46 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Triggers
Replies: 4
Views: 644

Re: Triggers

Congrats on NED. I am sorry about your extreme neuropathy. My DR constantly asked me about mine. I am a knitter. I knit all through chemo. When I could no longer hold small sock needles, I started knitting chunky scarfs with large needles (11-13). I really think that the finger gymnastics of knitti...
by RulaLenska
Tue Sep 18, 2018 7:32 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: ER Visit
Replies: 25
Views: 5679

Re: ER Visit

I’m sorry to hear about your ER troubles. I get sort of un nerved with these kinds of issues. I guess it scares me not knowing exactly what’s happening in there and then anxiety takes over. So when I get to this stage I take .5mg of lorazepam. Not so much that it knocks me out but enough to reduce t...
by RulaLenska
Mon Sep 17, 2018 9:35 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Triggers
Replies: 4
Views: 644

Triggers

Triggers of the painful variety. I noticed my first trigger last summer. I was still on the 5FU pump. I would get a bollus prior to the 46 hour hook up. Twice my pump malfunctioned and I also received a bollus prior to disconnect. This triggered an extremely painful bout of hand and foot syndrome th...
by RulaLenska
Wed Aug 22, 2018 10:47 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Feeling better finally after liver resection
Replies: 4
Views: 633

Feeling better finally after liver resection

I’m feeling better now, like I’ve turned the corner. I had a really good check up with my surgeon this week. CT shows almost complete regeneration, blood work looks great and my CEA is 4.3 which is the lowest it’s been since diagnosis when it was 400. I’ll see my Onc in a month with a repeat of labs...
by RulaLenska
Wed Jul 25, 2018 10:02 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Liver resection recovery
Replies: 2
Views: 464

Liver resection recovery

Just checking in. It’s been a slow recovery so far from my resection 6/12. I knew it would be challenging but didn’t know in what ways. Every third or forth day is pretty good and it feels as though I’ve turned a corner. Then I feel crappy again. Some days no appetite then edema shows up again then ...
by RulaLenska
Wed Jun 20, 2018 8:55 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Home from the hospital
Replies: 2
Views: 504

Home from the hospital

Came home today after my liver resection on the 12th. No major complications. I required a lot of pressers during the 8 hour procedure which is my biggest slow down. I gained 40 pounds of fluid in a day. This is really uncomfortable but is abating with medication and walking. Though I’m sore and tir...
by RulaLenska
Mon Jun 04, 2018 10:35 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Hand and foot syndrome
Replies: 9
Views: 597

Re: Hand and foot syndrome

DH used a lotion with Urea...Eucerin or another good name brand works well to soften the skin which seemed to relieve things. Check the ingredient label. He had bad HFS during Xeloda and finally switched back to infusions. I spread lotion on his feet every evening before bed. You could put the loti...
by RulaLenska
Mon Jun 04, 2018 7:07 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Hand and foot syndrome
Replies: 9
Views: 597

Hand and foot syndrome

My hand and foot syndrome is active again and I’m not sure why. I’m off all chemo including vectibix. This is by far my most painful side affect. Does anyone have a magic remedy for this? No pain meds seem to touch it. I have freezer packs but I can’t keep them on all the time. This is truly an exha...
by RulaLenska
Sun Jun 03, 2018 11:56 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: PVE response
Replies: 6
Views: 429

Re: PVE response

Thank you Geoman for all the info. I’m fortunate to have one of my sisters coming from out of state to care for me and keep me moving. She is the perfect combination of compassion and big-sister-bossy! Did you have any issues with your diaphragm? As far as coughing or sitting up or standing erect? I...

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