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by ktwmn
Fri Jun 01, 2018 11:29 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anemia while taking xeloda and avastin UPDATE PROGRESSION
Replies: 12
Views: 2256

Re: Anemia while taking xeloda and avastin UPDATE PROGRESSION

Well, I had a MRI last week and it looks like my peritoneal tumors have progressed and it is time to say farewell to the relative stability I enjoyed over the past 18 months or so. After getting infused iron I began to notice symptoms for the first time. The pelvic lesion is now infiltrating the pel...
by ktwmn
Thu May 10, 2018 7:15 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anemia while taking xeloda and avastin UPDATE PROGRESSION
Replies: 12
Views: 2256

Re: Anemia while taking xeloda and avastin UPDATE Elevated CA125

Thx for your insights, RP1954! CEA has never been measurable for me, so I convinced my onc to use CA-125. I actually had ovarian cancer in 1994. Because of the way my cancer behaves (pelvic mets near old ovarian cancer and endometriosis sites) I have often wondered if perhaps the ovarian cancer has ...
by ktwmn
Wed May 09, 2018 11:05 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anemia while taking xeloda and avastin UPDATE PROGRESSION
Replies: 12
Views: 2256

Re: Anemia while taking xeloda and avastin UPDATE Elevated CA125

As I originally wrote, my Hgb and and HCT were gradually tanking between November and February, so onc did iron test in February. It took over two months to get the results, but last Friday I asked about it; it came back low (6) so basically I was told I am clearly iron deficient and onc orders IV i...
by ktwmn
Sat Apr 28, 2018 9:53 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: KRAS and BRAF MUTATIONS
Replies: 14
Views: 2726

Re: KRAS and BRAF MUTATIONS

Insurance never covers integrative therapy such as IV vitamin C. So these adjuncts are out of reach for those of us on limited income (I can barely cover the $5000 out of pocket for my annual health insurance costs).
by ktwmn
Fri Apr 27, 2018 7:02 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: To all HEPATIC pump users - Dr. Kemeny
Replies: 12
Views: 2736

Re: To all HEPATIC pump users - Dr. Kemeny

From what I gather from the FB group, Codman is out but Medtronic is the leading supplier that will be picking up the contracts for HAI pumps. This from a patient of Dr. DeMatteo at Penn.
by ktwmn
Thu Apr 26, 2018 10:05 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: To all HEPATIC pump users - Dr. Kemeny
Replies: 12
Views: 2736

Re: To all HEPATIC pump users - Dr. Kemeny

Wouldn't it be innovative of J&J to update the technology to a faster, smarter and lighter-weight model? (That goes for other chemo drug paraphernalia, including the clunky ca. 1990 5FU device). Clearly, patients--their survival and their comfort --are not a priority!
by ktwmn
Mon Apr 09, 2018 11:16 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 8 years war
Replies: 20
Views: 6661

Re: 8 years war

(R)evolution often comes from the patients.


Thanks for being the vanguard of the masses (i.e., us)!!
by ktwmn
Mon Mar 26, 2018 11:57 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 8 years war
Replies: 20
Views: 6661

Re: 8 years war

rp:

This is testimony to the judicious use of supplemental care. Thank you for all your input on this forum! I know whenever I needed advice, for mitigating SEs (for example) you always respond! You are obviously an awesome caregiver! Thanks for all you do!
by ktwmn
Sun Feb 25, 2018 7:05 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anemia while taking xeloda and avastin UPDATE PROGRESSION
Replies: 12
Views: 2256

Re: Anemia while taking xeloda and avastin

Interesting. Unfortunately my MCV fell along with the HGB RBC and HCT, the only thing that rose was the RDW. I noticed that during my week off I feel fatigued for about 5 days, which makes me think that is when my nadir hits (I do one week on, one week off). 2-3 good days and it’s time to start agai...
by ktwmn
Sat Feb 24, 2018 9:17 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anemia while taking xeloda and avastin UPDATE PROGRESSION
Replies: 12
Views: 2256

Re: Anemia while taking xeloda and avastin

Thanks for these great replies!

One of the things I noticed on my report is a very high RDW (22). MCV is normal but has been higher than normal in past months. This seems to suggest macrocytic anemia.

When initially diagnosed, I was anemic but RDW and MCV were both in normal ranges.
by ktwmn
Sat Feb 24, 2018 1:50 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anemia while taking xeloda and avastin UPDATE PROGRESSION
Replies: 12
Views: 2256

Anemia while taking xeloda and avastin UPDATE PROGRESSION

Has anyone experienced gradually becomic anemic while on xeloda and avastin? I’ve been on this combo for over a year, with a couple breaks from avastin, and my RBC, HGB, and HCT had been good until the past few months where they have started to tank. I understand that the side effects are cumulative...
by ktwmn
Thu Jan 25, 2018 10:21 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Chemotherapy Journey
Replies: 59
Views: 6519

Re: Chemotherapy Journey

Riki, ask to have a port study done. I was having terrible pain in upper back and noticed a neck vein was enlarged. The pain was constant. So I had a port study. Sure enough it had migrated to the azygos vein and had to be taken out. (Also it had quit giving blood months before).
by ktwmn
Wed Nov 15, 2017 10:27 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Tom marsilje
Replies: 40
Views: 6722

Re: Tom marsilje

A warrior, a scientist, a lion. Someone who has given so much to so many of us. My heart aches for his dear family. Run free forever, Tom, in a place where there is no more pain but only infinite peace.

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