mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

[Asterix]

mameyann
CEA varies from person to person. Some people's cancer doesn't secret much CEA at all, and so there CEA is normal (<5) even though they have widespread disease. Other people's cancers (such as mine) secret lots of CEA. Mine is 500 at last count, and I only have lymph node and a few small lung mets. Your husband's CEA appears to correlate with his cancer, so it will be useful in monitoring. The absolute number is not comparable from patient to patient. My CEA was only 65 at diagnosis, and I had a bigger tumour in my colon then. Hope that helps.

[Guinevere]

Yes, Asterix is right. I had two rumored at first and my CEA never rose above 4 and this was with a "hidden" liver tumor! For some people, CEA is an excellent marker. For some, it's not. Talk to your oncologist about what they about that number. My oncologist realized it wasn't a good marker for me after there was a trend of the same kind of number no matter what was going on tumor-wise.
Today's disconnect day and I'm already feeling sick and have 3 more hours to go before disconnect. Ugh!

Probably won't post again until Saturday. I hope all on this thread van find the blessings in this day!

God bless ~
Gwen

[mameyann]

Thank you so much for your replies. Even though I have done a ton of reading on this I still have many questions. I have found this forum very helpful. It will be interesting to see what his CEA is next week. He is being treated with Folfox ( 3 treatments completed) and they will be adding Avastin during his next treatment. On a bright note he has had few side effects, his appetite has improved and he is still working full time, although I worry he is not getting enough rest. He was very healthly going into this and I hope the treatments don't bring him down too far. I am trying to be positive and handle one day at a time. Thoughts and prayers go out to all of you dealing with these issues.



Mameyann wife of
DH age 53 dx on 03/14 colon cancer with mets to liver and lungs
inoperable at this time
03/14 Started Folfox w/pump every 2 wks

[jeanette57]

Anna
""Also, my neuropathy from the Oxaliplatin has gotten worse since treatment concluded, especially in my feet. Incredibly uncomfortable."""
can you tell me about the Oxaliplatin? I am going on it as the others chemo are now not working. I have hair growing on my head, clear sign that Eur/Irec now working. Next to try on Oxaliplatin and 5 FU- was told I can NOT drink anything cold as it will be like glass splinters going down. GREAT with the start of the worst hottest summer ever. no cold drinks will be hell! hot tea here I come.
-----------------------------------
CEA just had this talk yesterday as we discussed my time off chemo because of eye and nose infections. Hell with this but getting better. Now doc said that 12,000 was the highest he seen so your hubby has it beat. I would not worry about it. I would start researching liver pump - others here had it done. The second part sorry is harder because I have lung mets that require Oxygen 24x7. Not easy to breath is HELL - darn air gets in but cant get out- I am having problems just blowing my nose.

take this time and talk, research, enjoy a sunset and sunrise. Don't let fear and loss ruin the time you have left be it 1 day or 10 years. enjoy - plus use the website for healthy meals for cancer patients to extend the time.

[ullefan]

When you drink cold stuff, it tastes REALLY BAD. So you won't be tempted. I drank lots of warm tea. In the scheme of things, those side effects barely touched my radar.

[dianne052506]

Jeanette,
When I had oxaliplatin every 2 weeks, the cold sensitivity in my mouth did not last a full week each time. On week 2, I was able to drink my normal cold drinks. The cold sensitivity in my hands and feet, however, took a long time to leave, and wasn't gone completely until after I was off of oxaliplatin for several months.
I like my cold drinks with extra ice, so I switched to just chilled drinks and that was enough. I never had to go to room temperature drinks, but I think everyone is different, so you may just have to wait and see how it works for you.
Best wishes,
Dianne

[Candyys03]

Anne,
You can search topics at the top of the colon club posts.
Search Oxaliplatin and you may find suggestions that will work for you.

I had it before. Try lotions. I like utterly smooth. But I have used coconut oil also. Soak feet.Where socks.
It can get bad but it could also get worse.Hand and foot syndrome is much worse than neuropathy.
Try not to get neuropathy medicine because it has many side affects.

Candy

[jeanette57]

I have the hand and foot. the foot got a sore which caused a wound which will not heal as I am on chemo. I keep it clean and it is sore- just under my little toe. ouch x 10000000. Fingernails not happy also. split and red - oh joy when I try Oxaliplatin next on the list.

[Guinevere]

Are they really talking about Oxaliplatin for you now, Jeanette?! Lordy mercy!

I didn't get any sleep last night. My feet felt hot and I couldn't get comfortable. My skin felt weird too - like I had eaten too much salt but I wasn't retaining water or anything. Add hellacious mouth sores and that was my night. I finally went to the DOH and had a fan blowing on my feet and that helped the hot foot problem. My skin finally started feeling better. Mouth still hurts - a lot but I have Magic Mouth Rinse and salt/soda solution. I felt nauseated later in the day and wondered if all the stuff last night was a prelude. Don't know but at least I can be up for little bits at a time without the nausea. Yea me! Hopefully, tomorrow I'll be relatively okay. We're supposed to go and the Princess and her paternal unit. (Ha!) She pushed herself up to a sitting position to her mama's astonishment. Our oldest in TN was in an equestrian competition yesterday and won a 1st place, 2nd place and a 3rd place and was named Reserve Grand Champion. She beat out a 12 year old that's been riding about 2 years longer. Pretty cool day for all of us, I'd say.

God bless ~
Gwen

[jeanette57]

Wild ride this last week. last Monday told me my heart was beating to fast, follow up Thursday, called 911 got me directly into hospital because my eye was infected and they thought it went to the brain. Friday all day blood transfusion, brother stayed with me in hospital as there were problems. Saturday got frantic call from mom, my caregiver must have stolen her car to commit suicide as his belonging even cigarettes were there. then calling everyone, he came walking into moms house around 5ish. he stole her car drunk and drugged,got arrested with DUI begged not to press charges. Yes all my oxi pain meds gone and I never even tried one. Saturday blood again, and they let me out at 9:30 pm as I had to go to church - gods calling - Got my message and since Mom took a bad fall Easter morning, gave her my morphine and she slept in my recliner. Said I moved a hospital to release me (god did) and she was fine. tomorrow I take her to the doc as she has had a head ache all week.

If that was not enough of a wild ride I asked the doctors if death was beating down my body- What an odd feeling kinda like an earthquake on the inside. It felt like my soul was beating to be free. It felt like my life was over but my soul couldn't get out. So guess God has plans and I need to deal with them. I am tired. I have not recovered from the hospital stay but eye is good. I did show the doctors why it was so important I attend Easter for the white stone . another story. they were impressed and so happy to make my journey full.

[Guinevere]

Good grief, Jeanette! Glad your eye is doing better and I hope your "caregiver" is GONE. As in "goodbye and don't come back!". So sorry that your mom had a fall. Those are scary even if they have good bones. I tell my mom she can always get a concussion. It's not just bones we worry about. My MIL had dozens of falls and, one of the worst, there were no broken bones but there was deep, deep bruising which took about 3 months to heal!

Still feeling a little weird but not so sick this morning. I don't know what's going on inside and I'm just too tired to get all het up over it. I'm trying to "save my spoons" for seeing the Princess later today. Beautiful day today. Not too hot or too cold. I'm determined to enjoy it.

God bless ~
Gwen

[tchan8888]

Jeanette,

Unbelievable! Your strength and attitude is amazing. I said it before and I'll say it again: You inspire the hope and laughter in me!

Blessings,

Tom

[janeandrea]

Jeanette, I agree with Tom. And I just did a search here on "The Spoon Theory" to see if it had been discussed, given your "spoons" comment. Is that to what you were referring? I love that story. My best friend sent it to me awhile ago, and I recently posted it on my CarePage. Great description of what we go through.

Jane

Edited to add - I didn't find it on a search of this forum.

[jeanette57]

Thanks guys HOWEVER you inspire me! I am still alone in my house, caregiver who I started to appreciate and give hugs betrayed me. So I move on day by day. I have been given such a gift from my spirit (I call her/him god) No pain 98 percent of the time.
In my bucket list I went to the ocean - now my friend offered me a very expensive but free to me package to spa resort for 2 days. then another friend just got me 2 nights at a casino (4 star). Yicks gifts from people I have helped in the past.

Tomorrow I am starting my " I am dead, but this last letter mailed 6 weeks after death) will give love and light to all the memories. It is crazy going through old photos and spending 100 plus bucks to ship many of these back to my xmas (list) friends. I noticed a lot lately how so many people are there the first few weeks then it all quiet n- that was when you need the most comfort. Odd to me but what I see in my life.

I am still pissed my family does not want my little cottage all 700 sq feet - free and clear. I am getting a mini split next week, so they can bitch about the swamp cooler. Oh I am leaving to mom in case she needs a caregiver to help her. She lives on the next street and I have a sidewalk to her back door.

I am wired today from t he chemo and steroids and will try to lay down but brain is on search mode. I learning mini split mode and seer ratings. Oh joy.

thanks to all of you - many of you will never know how your support - whining and love has helped in the times I want to go but didn't. you all are my inspiration

[Guinevere]

Now I remember that it was on the ostomy board that we had the "Spoon Theory" discussion! To me, it's one of the best & easiest ways to explain diminished capabilities.

Jeanette, are you up to the chaos of a move?? The thought of us moving fills me with the shivers! We thought we might have to last year but, thank the Lord, that wasn't the case. Whew!! I think leaving your little house to your mom for a caretaker's place is an excellent and thoughtful thing to do.

Today, I'm just so fatigued and about to take my 3rd nap today. Other than that and mouth sores, I'm chugging along pretty well.

God bless ~
Gwen