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by boxhill
Tue Aug 04, 2020 3:32 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda? What else is new?
Replies: 52
Views: 21913

Re: Keytruda? What else is new?

Yvette, as you can see from my sig, I have a KRAS mutation. To my knowledge, KRAS mutations are irrelevant to use of immunotherapies such as Keytruda and Opdivo/Yervoy. What KRAS mutation does rule out are EFGR-related targeted therapies, such as Erbitux and Vectibix. You need to find out whether yo...
by boxhill
Fri Jul 31, 2020 12:00 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Please help, my Dad has no oncologist possible bile duct blockage?
Replies: 9
Views: 516

Re: Please help, my Dad has no oncologist possible bile duct blockage?

I'm sorry your father is in this situation. It sounds as if he might well feel abandoned in mid-stream. Is you naturopathic oncologist an actual MD with oncology training, and affiliated with any hospital in your area? Can s/he order test and scans, and have your father admitted to the hospital if n...
by boxhill
Tue Jul 28, 2020 12:44 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: I have just been diagnosed with colon cancer
Replies: 11
Views: 728

Re: I have just been diagnosed with colon cancer

If at all possible I think you should be seen at MD Anderson in Houston. If they have a satellite cancer center closer to you, you could try that. Not only are they one of the top cancer centers in the country, but places like that usually have patient financial support offices that can help you fig...
by boxhill
Tue Jul 28, 2020 12:32 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: One Year
Replies: 8
Views: 612

Re: One Year

It is not acceptable, IMHO, to have a doctor whose office does not respond to you in a reasonable time. I would try to find someone who practices at a cancer center with more resources.

Good luck.
by boxhill
Sun Jul 26, 2020 9:19 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda? What else is new?
Replies: 52
Views: 21913

Re: Keytruda? What else is new?

I was on Keytruda from 12/31/19 until around 6/20. Stopped because an MRI finally confirmed that I was NED as shown by multiple CTs. Hoping that my arthalgia will improve. I did nothing to change or add supplements. My next MRI, assuming that it is approved by insurance, will be 8/11/20. If it conti...
by boxhill
Thu Jul 23, 2020 1:23 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Happy 16 year birthday/cancerversary to me.
Replies: 12
Views: 769

Re: Happy 16 year birthday/cancerversary to me.

What a great story!

Thank you so much for coming back to celebrate your cancerversary. :D
by boxhill
Thu Jul 23, 2020 1:08 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Pathology report - some good news, also unexpressed MSH6
Replies: 11
Views: 942

Re: Pathology report - some good news, also unexpressed MSH6

Regarding trials as a means of access to Keytruda, I was consistently told that because I had no known masses after surgery, like you, I wouldn't be able to get into one. Someone on another forum joked that NED sometimes is said to stand for "not enough disease." :D It's very nice not to h...
by boxhill
Mon Jul 20, 2020 12:10 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Pathology report - some good news, also unexpressed MSH6
Replies: 11
Views: 942

Re: Pathology report - some good news, also unexpressed MSH6

Congratulations on all the good news! Regarding your ground glass lung nodules, I would not be complacent, but also not leap to the conclusion that it is cancer. Ground glass nodules are also caused by infections and other conditions. Especially if they are so tiny--2mm?--just keeping an eye on them...
by boxhill
Fri Jul 17, 2020 5:58 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: ADAPT and Celebrex - What happened?
Replies: 28
Views: 7467

Re: ADAPT and Celebrex - What happened?

I've been taking celecoxib since December 2019 for the bad joint pain I've suffered as a side effect of Keytruda. Everything still hurt, but significantly less. What is it supposed to do as part of the ADAPT protocol? My understanding is that it is a COX2 inhibitor, so helps with inflammation. I've ...
by boxhill
Fri Jul 17, 2020 5:43 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Covid and the non-believers
Replies: 18
Views: 1705

Re: Covid and the non-believers

zephyr, I get your point, but a) no one here has engaged in heated debate, and b) it's easy to skip the thread if you wish.
by boxhill
Fri Jul 17, 2020 12:03 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Recently Diagnosed with Stage IV Colon Cancer
Replies: 13
Views: 942

Re: Recently Diagnosed with Stage IV Colon Cancer

To be more precise...Oxaliplatin is part of FOLFOX: usually an infusion of premeds such as steroid and anti nausea med, then infusion of oxy and leucovrin, lastly a bolus of 5FU followed by about 46 hrs of 5FU on the pump. The Avastin is extra. BTW, lots of people get a bag of fluids when they come ...
by boxhill
Fri Jul 17, 2020 11:50 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Covid and the non-believers
Replies: 18
Views: 1705

Re: Covid and the non-believers

Nevertheless this is very relevant to cancer patients. I don't have to deal with this problem. Everyone I encounter in an indoor setting is wearing a mask. I went to a 1,000-person BLM in June demonstration--realizing that I was taking a potentially big risk--and 97% or more were wearing masks. (I w...
by boxhill
Thu Jul 16, 2020 3:27 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Recently Diagnosed with Stage IV Colon Cancer
Replies: 13
Views: 942

Re: Recently Diagnosed with Stage IV Colon Cancer

Get copies of his radiology reports and biopsy pathology report. Find out whether they have done the standard preliminary genetic testing, and if so what the results were. If they haven't done it, ask for it to be done. I would think about asking the oncologist WHY the surgeon wanted to do chemo bef...
by boxhill
Mon Jul 13, 2020 9:03 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Not DX yet - Which questions should I ask my doctor?
Replies: 15
Views: 1139

Re: Not DX yet - Which questions should I ask my doctor?

I had 20+ staples. I hated those damned things. :D They weren't a problem when tho whole thing was covered by the would evacuation thing, and then by a dressing, but after I left the hospital they drove me nuts. Couldn't wear anything that touched them, so it was either a nightgown or this one old f...
by boxhill
Mon Jul 13, 2020 8:56 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Recently Diagnosed with Stage IV Colon Cancer
Replies: 13
Views: 942

Re: Recently Diagnosed with Stage IV Colon Cancer

Let me preface this by saying that I am definitely NOT a doctor. I always have a problem with descriptions of tumors as "inoperable," when what they really mean is that "we can remove it, but it won't be fully curative by itself because of mets elsewhere." I wonder whether it wou...

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