The Colon Club

LPL thank you for your encouragement. ALL of the men and women going through this have my heart. I started the BRAF thread hoping to help others see that this really is a good phase III trial for this subtype, and even if he’s struggling with it, there are many showing stable or regression. Treatments are in the pipeline for many not just his particular form of it. I want to help in some way, as well as Mr Ziggy. If the only way I can help is through love and encouragement that’s what I’ll do. Treatment, Love and hope go hand in hand. A lot has changed in just the past 5 years! We now have targeted therapies and people are surviving longer and can be with their loved ones. I hope for good things for 2018!

LPL, are you able to watch inflammation markers like ESR or hsCRP tends too? (inflammation maybe in ferritin too)

A passing virus may spike both hsCRP and CA199 even if asymptomatic. ESR is less sensitive.
If no inflammation markers, might be some value in the neutrophil:lymphocyte trend data from CBC with differentials. The CEA - CA199 data are easier to understand and discuss if the trend is current.

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 discuss. None of the test results have been posted online yet either which he usually does. I'm smelling bad news, like change in regime or worse. Not sure how CEA could have gone down and yet we are facing what appears to be nothing good.

M

PS . Mrs. Zig, please take care of yourself! I got no sleep last night and I expect to get none tonight so I'm a fine one to talk.

Dear M, just saw your post and totally understand that you “freaked out”. Why on earth write like that in an email? It can only create worry & questions for 24hours. I hope that you now have had the conversation with the doctor and that it was not very bad news.
Warm Hug
Lena

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 and went to work today and will tomorrow. He feels fine, got out and walked a lot for lunch at a local museum. Too cold outside!

Blood work is posted in the patient portal (but no CEA results) but no scan. Blood work looks fine except for the platelets are down to 82 and bilirubin is up to 3.9 which we knew. Protein even went up!

Another night of no sleep I guess.

M

M, oh this waiting...
So do I understand you correct that also the liver function tests* (the doctor mentioned) were posted and were OK?
Good to here your DH is feeling fine !
I hope you can get a little sleep tonight. /Lena

Edit: * apart from bilirubin, I was thinking about the enzymes.

MHF waiting is the worst. And the checking of patient portal. Why did he send an email like that with no follow up? Ugh! If anything maybe he’s changing treatment? I hope you were able to sleep somewhat, but I know that’s difficult after your doc pulled that one. I would address with doc about what that put your family through. Light a fire and run. No fair! Please let us know how he makes out we care. I hope everything turns out alright. Our minds go to bad places. Sending love! Mrs Z

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. Frankly, I didn't think it was that awful of a score. He's ordered another blood test for Monday in the hope it will fall now that DH is off Xeloda. The plan is to go back to the 5fu pump if it does fall, which is fine with me. The diarrhea and the hand/foot dryness is much worse on the pills.

I'm reading that red veggies and fruits with their lycopene will help decrease the bilirubin. I fed him chicken tortellini with tomato sauce for supper. Have to find some guava or watermelon as he can't have red peppers. I've heard there's a jaundice tea but not sure I want to do that.

HUGS to all...thank you thank you thank you.

M

I am so glad that it is better news than what you were anticipating. Funny how we automatically assume the worst but SOOOOOOOOOOOOOOOOOO Freaking relieved when it is not as bad as what our minds make it out to be.

Cancer is such a bitch!

M, it was so good to read your ’sigh of relief’ I’m sure you were able to get some sleep after the “sigh”
Hopefully your doctor will stop ”Light a fire and run” (as Mrs Zig described it).
Keeping my fingers crossed for your DH’s next blood test, that his bilirubin will start to go down when being off Xeloda.
My Husband has never been on Xeloda but I read that:
”Increased bilirubin in your blood is common with XELODA.” https://www.gene.com/download/pdf/xeloda_ppi.pdf

I have also made a Sigh of relief today hubby’s CT-scan was OK so he is still ‘NED for now’ Next check-up is scheduled for June. I will however be reading about CA 19-9 since the Onc mentioned that even some food (?) may elevate it. Never heard about that! Forgot to ask her for more specific info... (Hubby had 35 and his Lab’s ref value is <30.9). I wonder if a fatty liver can influence? This website http://www.kantrowitz.com/cancerpoints/ ... tives.html did not say anything about food or fatty liver as a cause of false high.. will keep looking.

rp1954, Thank you so much for your suggestions. I will post questions about monitoring testresults and trends later. Today is a day of enjoying good news.

Kind regards & well wishes to all

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 caused by the Xeloda because it was not a problem before. Onc seems to think it's the OX. Fingers crossed for Monday. I found some watermelon at Whole Foods and a spinach salad and salmon. That all sounds nice and liver friendly.

M

I updated my sig with the newest info. After 3 months of FOLFIRI + Erbitux (not fun), his CT yesterday showed growth and spread as well as mets to spine and pelvic bone. He's switching to FOLFIRI + Avastin. We were so surprised because his pain went away. His kidney is backed up because of tumor pressing on the ureter, so he will get a stent placed in the next few days. This sucks. I wish it didn't take 3 months of feeling like crap to know that something is or isn't working. Has anyone switched from Erbitux to Avastin or vice versa and seen improvement?

I suspect what you would see, if they did more markers, is a big shift in marker expression.

Let's say they drew markers CEA, CA199, AFP, CA125, CA72-4,etc (and watched LDH and ALP panels). What you're likely to see is CEA going down perhaps way down, some other marker(s) going up, and LDH going up.

Avastin is a broader cast treatment and it is likely to improve things. I've seen another member add IV vitamin C to the folfiri-Avastin stack, along with vitamin K3,and add three more years of treatment after she would have quit Folfiri.

Hi,
I am very new to all of this. My husband had a mass and about a foot and a half of his colon removed three week ago to weeks ago we learned the mass was a Adenocarcinoma the surgeons were running more tests to see if it is stage two or four. It was not in the lymph nodes i am very thankful for that. I have a few questions if any of your experences any help or insight would be greatly appreciated.
Frist of all I am active duty Coast Guard and our health care leaves a lot to be desired we just got our referral to the oncologist of course called we called and was transferred to the new patient appointment line and had to leave a message I just want to know how long after the diagnose did it take for an oncology appointment?
Also what should I prepare myself for treatments, tests, ext?
Any advice would be appreciated thank you in advance

Hi, I've just joined the forum as I found it last night and this Wives thread has already resonated so much with what I have been going through since May 2017, when my beloved husband - age 52 - was diagnosed with Stage IV colorectal cancer with extensive liver mets (deemed by the doctors to be way too extensive for any resection to seem a prospect, even a long-term prospect...) .
Can anyone tell me if this forum thread is still alive? If not, does anyone want to join me in reviving it, please? It looks like last post was in Feb, or at least that's what is showing up for me. I'm just finding my way around the site, though, so am I missing something?
THANKS. x C