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by mhf1986
Thu Jan 18, 2018 7:53 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Wives of husbands with Stage IV Colon Freaking Cancer
Replies: 3520
Views: 485461

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Congrats Lena! And a wish for MANY MORE GOOD SCANS!!! Robin01...you are so right...I don't have enough bad names for it. Mrs Z hope things are good in NY. Cold here. DH has never done the CA19-9...something worth asking about? What does it show differently than CEA? I too think the high bilirubin is...
by mhf1986
Wed Jan 17, 2018 7:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Wives of husbands with Stage IV Colon Freaking Cancer
Replies: 3520
Views: 485461

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Ladies, thank you for your support. I am crying with relief. Dr. called this afternoon at 4:15. One node grew by 1mm. Could be a measuring error, could be sign the OX has lost effectiveness. 1mm since Oct 2017...I'll take it. Doc's biggest concern is bringing down the bilirubin from 3.9 to under 2. ...
by mhf1986
Tue Jan 16, 2018 8:13 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Wives of husbands with Stage IV Colon Freaking Cancer
Replies: 3520
Views: 485461

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Lena et al, The freaking out continues. Dr. sent another email at 11:15 this morning saying I will call you later today. DH responded to email. Then nothing. Stomach in knots. So DH is going to call hospital tomorrow and hope to be connected through or at least leave a voice mail. DH was a trooper a...
by mhf1986
Mon Jan 15, 2018 3:22 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Wives of husbands with Stage IV Colon Freaking Cancer
Replies: 3520
Views: 485461

Re: Wives of husbands with Stage IV Colon Freaking Cancer

I have officially freaked out. Nurse called and said treatment was canceled for tomorrow because of low platelets. Then, while DH is taking his nap, Dr. sent an email saying treatment was canceled due to low platelets, liver function tests, and CT scan results. He will call tomorrow afternoon to dis...
by mhf1986
Sun Jan 14, 2018 11:21 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Wives of husbands with Stage IV Colon Freaking Cancer
Replies: 3520
Views: 485461

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Sending out good vibes for all of us with DH January scans...DH has CT and blood work tomorrow. Review results with onc on Tuesday except he usually posts them online early. Hoping scan shows stability or decrease in mets because CEA has come down a bit since re-starting the OX. However, If bilirubi...
by mhf1986
Wed Jan 10, 2018 4:05 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Chemo Break
Replies: 8
Views: 383

Re: Chemo Break

Agree with the above breaks. DH skipped his early November treatment when we were switching regimes, so he was 4 weeks between infusions. He will probably need to skip a treatment in April as we are planning a vacation. Dr. said it's fine to do that. Dr. was willing to give him Christmas off too but...
by mhf1986
Sun Jan 07, 2018 4:02 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone doing xelox and xeloda. Please help
Replies: 23
Views: 569

Re: Anyone doing xelox and xeloda. Please help

Hope, Are you taking your Xeloda 1/2 hour after eating a lite meal? Are you drinking lots of water during the day? DH had to drop from 3000 to 2000 his second cycle because of hand/foot issues, now he is back up to 2500. His hair has slightly thinned only. Do you have an oncology nurse you can call ...
by mhf1986
Sun Jan 07, 2018 3:50 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: any peeps with BRAF mutation on here?
Replies: 120
Views: 3615

Re: any peeps with BRAF mutation on here?

Mrs Z, I think DH's fluid was caused by lack of protein for 6 weeks after surgery, sepsis, and too much IV fluid for 2 weeks in the hospital. His legs swelled up so badly he could barely walk and the fluid also escaped into the space around his lungs, one of which had collapsed during surgery. The l...
by mhf1986
Sat Jan 06, 2018 7:28 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: any peeps with BRAF mutation on here?
Replies: 120
Views: 3615

Re: any peeps with BRAF mutation on here?

Sending hugs Mrs Ziggy! DH had pleural effusions about 11 months ago, after his surgery. The new oncologist picked up the problem on the first visit, not the Dr. we'd been seeing for 7 weeks. They drained both lungs, 1 each day, fairly easy out patient procedures. Enormous bags of fluid. After the d...
by mhf1986
Fri Jan 05, 2018 8:19 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Facing a permanent stoma
Replies: 41
Views: 1355

Re: Facing a permanent stoma

DH switched to the Coloplast Sensura Mio Clic about a year ago. Made a huge difference in his QOL when he didn't have to empty. They are very easy to use: put on a ring if you want, the base plate (cut hole to size as usual), and add the matching size pouch. It's similar to a tupperware "pop&qu...
by mhf1986
Tue Jan 02, 2018 7:58 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone doing xelox and xeloda. Please help
Replies: 23
Views: 569

Re: Anyone doing xelox and xeloda. Please help

Yes, Xeloda can cause digestion issues. Did you get Zofran and Steroid as pre-medicine on the day of your infusion? Do call your nurse or oncologist and ask for help now and also mention this side effect before your next infusion. DH takes 1 Ativan right before bed. We keep a stash of saltines and g...
by mhf1986
Sat Dec 30, 2017 8:29 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Xeloda worries: back to the pump?
Replies: 2
Views: 252

Xeloda worries: back to the pump?

Not sure Xeloda is for DH...thinking about going back to the pump. Much worse hand/foot (he could barely walk) caused drop from 3000 mg to 2000mg 2nd round. For this 3rd round now, he's trying 2500mg and tips of fingers are slightly cracked (it's cold/snow so that hasn't helped) but feet are fine. D...
by mhf1986
Wed Dec 27, 2017 7:13 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Facing a permanent stoma
Replies: 41
Views: 1355

Re: Facing a permanent stoma

Figure out where your clothes' waistbands are! DH had an emergency stoma after a leak and unfortunately it's right where he wears his belt. So now he hikes up his pants above that and says he feels like a caricature of an old man. Sweats are more comfortable for him but he's not a fan of the style. ...
by mhf1986
Tue Dec 19, 2017 9:10 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone with Stage IVa just do Xelolda or 5-fu?
Replies: 90
Views: 5892

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

DH is having a rough time with Xeloda. Hand/foot pain necessitated a drop in dosage from 3000 mg a day to 2000 last week. Diarrhea has been a problem since the weekend; he's been taking 5-6 imodium a day and about to increase to max of 8 a day. He's also cold and sleepy a lot. Last dose was this mor...
by mhf1986
Mon Dec 18, 2017 7:24 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Article: Quadruple Wild-Type Metastatic Colon Cancer
Replies: 2
Views: 409

Re: Article: Quadruple Wild-Type Metastatic Colon Cancer

I looked up DH"s report and it says "all genes to be wild type" so I"m guessing that means DH is Quad Wild Type. Will file that away for future reference.

Thank you to all who post articles, treatments, and other info!

M

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