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by beach sunrise
Fri May 17, 2024 2:27 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Newbie, need advice (caregiver)
Replies: 6
Views: 192

Re: Newbie, need advice (caregiver)

You have good info from experience/knowledge here. I will add that going down the rabbit whole on supplements is to have expanded bloodwork panels done before any treatment to give you a baseline to find out what exactly will help. You can find reccommended panels for CRC on this site, Rp1954 has po...
by beach sunrise
Thu May 16, 2024 3:54 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Recurring
Replies: 24
Views: 5341

Re: Recurring

It would be nice to have both though. I am thankful to have one measurement of disease not detectable so far. Gives me more time to limit growth and spread so I can be proactive faster if/when I need to be.
by beach sunrise
Thu May 16, 2024 3:51 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: drug shortages - Non-policy solutions
Replies: 3
Views: 270

Re: drug shortages - Non-policy solutions

Could be either, Claudine. We have top tier BCBS and recently they sent us a supplementary card by a whole different company to pick up extra costs for BCBS covered rx's. It paid nothing for xeloda, celebrex and Itraconazole. In fact the co-pay for the last two mentioned went up also from $10.00 to ...
by beach sunrise
Thu May 09, 2024 6:06 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Xeloda, hand-foot, weight training gloves...?
Replies: 2
Views: 161

Re: Xeloda, hand-foot, weight training gloves...?

I don't know about HFS but gardening did a number on my hands about a month ago from using a hoe, shovel, ect. I got thin cotton gloves (cut the finger part half way and got a pair of osteoporosis, arthritis type compression gloves with thin rubber grip on the palm (fingerless also). Those two have ...
by beach sunrise
Tue May 07, 2024 6:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lung oligometastatic
Replies: 11
Views: 514

Re: Lung oligometastatic

I hope and pray the chemo can help get her to NED. Her team seems optimistic and that is a really good thing. I look forward to more updates. To be fair, since I went alone I flew first class. Ate out mostly. You can cut the extra costs by getting tickets thru xyz.com. They are a German booking comp...
by beach sunrise
Mon May 06, 2024 3:02 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lung oligometastatic
Replies: 11
Views: 514

Re: Lung oligometastatic

BCBS in my state would not cover it. They cover no surgeries outside USA. To get the ball rolling send records and see what they can offer. Yes, my total bill for 4 nodules (2 in right, 2 inleft) was around $37,000. You also have airfare, lodging and food expense. And gosh the taxi service. I went b...
by beach sunrise
Mon May 06, 2024 9:37 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lung oligometastatic
Replies: 11
Views: 514

Re: Lung oligometastatic

Hi Jesse, it is poassible to get mutation info from biopsies. I wonder why they didn't do it? It is great her CEA is very low after surgery. Sometimes with mets, CEA isn't a good marker any more. Never dove into why that can happen but it does none the less. CA19-9 and ctDNA might be an option. Alth...
by beach sunrise
Wed May 01, 2024 4:17 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Trial update - VAXINIA CF33 - it’s over
Replies: 9
Views: 1307

Re: Trial update - VAXINIA CF33 - it’s over

Oh man, R-R! I am so sorry to read that it didn't work for you. Don't know if it would help but when my bile duct was inflammed interior and exterior my ND put me on bilberry extract, 3 caps 3x per day. It worked in 3 months time. By next scan bile duct was fine. It is also good for the liver in man...
by beach sunrise
Wed May 01, 2024 4:12 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: drug shortages - Non-policy solutions
Replies: 3
Views: 270

Re: drug shortages - Non-policy solutions

I had a problem with capcitebine several months ago and waiting to get it filled again now. Pharm called today and said they did locate it and will be ready for pick up tomorrow late afternoon. It's been a week of waiting. They also let me know there has been another co-pay increase, smdh. 4 yrs ago...
by beach sunrise
Sat Apr 27, 2024 1:36 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 5 years coming up soon
Replies: 14
Views: 1007

Re: 5 years coming up soon

You read my mind, Rp! I am just curious about the supplement phenylbutyrate and another one that I can't think of the name at the moment. I take butyrate so interested in the phenylbutyrate and difference between the two.. The amino-care supplement he suggests has everything I take seperately at muc...
by beach sunrise
Fri Apr 26, 2024 4:51 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 5 years coming up soon
Replies: 14
Views: 1007

Re: 5 years coming up soon

ND appt was good. No change in plan yet. PGE2 test and a few others are due. Those will tell if plan change is needed.
I also contacted the Burzynski Clinic in Houston about their amino acid/ peptide therapy. We shall see what they say.
by beach sunrise
Thu Apr 25, 2024 10:16 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Polyp Came Back as adenocarcinom, invading muscularis propria. What are next steps?
Replies: 7
Views: 768

Re: Polyp Came Back as adenocarcinom, invading muscularis propria. What are next steps?

When is your appt to go over the path report?
Have all your questions ready for an indepth discussion until understanding what all it means and go over next step with them.
Some others on the board might be helpful with your report.
Let us know when you find out more on this.
Good Luck!
by beach sunrise
Wed Apr 24, 2024 5:24 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 5 years coming up soon
Replies: 14
Views: 1007

Re: 5 years coming up soon

Dr.Rolle is retired. If you contact them it would be Dr. Kern as the contact.
Be sure to have ALL records; bloodowrk, treaments you have undergone (chemo and any other meds). path report, scans. Have them all in order by date so they don't have to sift, its time consuming.
by beach sunrise
Tue Apr 23, 2024 12:29 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 5 years coming up soon
Replies: 14
Views: 1007

Re: 5 years coming up soon

Pagola, after Germany reviewed all my records starting at day 1 of dx. The evaluation was 2 are most definitely mets but they will take all 4. I never had a biopsy but their expertise confirmed it. If you are worried then contact them and send all your records for review to them for peace of mind or...
by beach sunrise
Mon Apr 22, 2024 1:13 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 5 years coming up soon
Replies: 14
Views: 1007

Re: 5 years coming up soon

Thank you, Rp for support and believing in me that it was possible to stir down the road less taken. Yes, one met was there at dx but just sitting there at 3-4mm but was told its nothing at this point and "could" be debris (inhaled) or scar tissue. Mhmmm, then 3 1/2 yrslater it ws still th...

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