mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

[vickitwo]

The widow's benefit I received was $255.

[Val*pal]

Gwen, I hope you get your pain under control. Just keep in mind that there is a variety of pain meds out there so this may be your time to experiment! Your granddaughter is just lovely! She looks so alert and aware.

Jeanette, bitchiness can be a good thing. It means you're human AND fighting! I hope your swelling improves soon.

Val

[Rika]

Hi, all. I’m a 49-year-old female patient with mCRC (and non-native English speakers. Sorry for my poor English). I was diagnosed with colon cancer, took surgery and adjuvant Xeloda (capecitabine) 3 years ago. Just after finishing the chemotherapy, I had to undergo hepatectomy and adjuvant mFOLFOX6 for liver met. Since then, I had spent cancer-free 2.5 years, but my doctor found a new lesion on my liver last month. I’m having second hepatectomy tomorrow.
Now it's early in the morning here. I got nervous and couldn’t sleep last night. But thanks to this thread, I’m starting to feel a little better.
I’ll keep at it. Thanks and Good luck to you all.

Rika

[Bev G]

Hello Rika,

Thank you for joining us. So very sorry you have a reason to be here. I will be praying for you during your surgery tomorrow, and also for guidance for your doctors, nurses and other caregivers. No one wants a liver resection, but all of us who have been able to have one are grateful for the opportunity, as so many can never get there. I hope you know that subsequent liver resections are still done with CURATIVE INTENT and are often very, very successful. Praying yours will get you rapidly back to NEDSville. We are here for you.

Warm best wishes,

Bev

[Rika]

Hi Bev,
Thank you so much. Yes, I know that I have a chance for cure. But I got depressed just thinking about the surgery….so your warm words really, really cheered me up.
Thanks again. I’ll be back here soon!

Have a good weekend,

Rika

[Guinevere]

As scary as the surgery is, Rika, I'm so glad you're able to have it. More chance of being NED again.

Jeanette, they're right about the $255 SS benefit. AND, I believe it's only paid to a surviving spouse.

I'm waiting to talk to my onc's nurse to see if this pain, which is no worse today, is par for the course or something to be alarmed about. I'm allergic to ANY for of codeine whether natural or synthetic (Codeine, Oxycontin, Hydrocodone, Tylenol 3&4, etc) that really limits my pain med options. I can take Tramadol and, for worse pain, Dilaudid. I can also take Demerol but everyone seems to shy away from prescribing it for some reason.

I think one of the things I hate the most about cancer is that it makes me think I'm neurotic or a hypochondriac. Frankly, that kind of thinking is what lead me to having a heart attack right before I was diagnosed with stage four cancer. The cancer that I thought was hemorrhoids caused me so much pain, it contributed to the heart attack! Since then, I've tried to listen to my body and not think I can "walk it off".

Val, thanks for the complements on the Princess. I feel so blessed to be able to enjoy her!

God bless ~
Gwen

[jeanette57]

gwen - Fent-ten-nal patch ! pain is gone! can't spell

princess is BEAUTIFUL

[Guinevere]

Good news! I'm in no pain today! No stitch in my side, No weird pangs - nothing! AND, the Princess came to visit this morning. My mom and sister were thrilled to get to see her and her daddy.

I did find out Thursday night that if I take half a Dilaudid, I will get no sleep. So, now I know. Either take the full pill or forget about it.

I'm waiting to get Fentanyl for when the Dilaudids quit taking care of the pain. I don't want to build a tolerance to it. I know, though, that day's coming. It's just not here yet.

God bless ~
Gwen

[Bev G]

Gwen, what happens when you take one of the codeine-like drugs? A couple of years ago II started getting a bit of a rash when I took it, pretty itchy and wide awake throughout the night . My doc told me I had to take ATARAX (I think it's an antihistamine like benadryl) with it, and it's working great now, knocking me out for hours. My very favorite state when I'm hurting. I hope this might help.

xox

Bev

[jeanette57]

great news Gwen

Fentanyl is the patch I was trying to spell. These pain drugs are something. I can't have 92 of them because the side effect is shut down of my lungs. No rash or etc just can't get the air to move out of lungs. scary- had an attack yesterday and mom was hitting me (slapping) to get me to get it out.

I don't know what is going on with my lungs- my ox is really low. It was 66 in doc office - then 72 in wound clinic (nurse helping me do ""smell the roses and blow out the candle" I started to panic so got the slap! We bought an ox reader at walgreens and the darn thing was broken. I need to get another.

the funny side is watching people watch you getting slapped. some want to defend me, then others wonder what the heck did I do! They slap the arms or top of my head. Mom will try to beat the back side but with the broken #8 rib - have to be careful.

this is a interesting trip or journey!

[Bev G]

Jeanette, PLEASE ask your doctor what to do when your sats drop. I don't know how you were alive at 66. I think THAT device was broken. TELL PEOPLE TO STOP SLAPPING YOU. That is ridiculous, unnecessary and potentially dangerous, and does nothing to raise your sats. PLEASE TELL THEM TO STOP IT. You are hysterically funny much of the time, but this is NOT funny. Tell them to stop immediately. Please.

xox

Bev

[jeanette57]

thanks bev

I was at doc office (cancer center) and they are the ones slapping the first time. They ox test several times when they found it at 66. I was at the wound clinic Friday and again low ox stats. I can tell with killer head ache and feels like some one sitting on me. They did an Xray - left lung inflamed and not a lot of lung left. The city air is horrible do to dust storms! I now have a nebulizer and inhaler - which just walked away (can't find).

I kinda like the slapping as it takes my mind off the feeling of suffocation. It is like the old rubber band treatment for stress. It is not painful or really hard as we know it can brake a bone. It is just a distraction for me - like the nurse who takes my glasses off - leans in close and does the rose/candle to calm me down. I panic big time when an attack hits.

I am told I need to sing at home to improve my lungs and got a sports lung machine to help take deep breaths. It hurts to try it but will try to expand my lung muscles a bit.

So thanks - I am ok - the slapping helps as a distraction (I am not use to getting hit) Now they are discussing lung therapy called cupping which some with CF people? not sure yet

[vickitwo]

Jeanette,
I am not a doctor so first thing I will say is to discuss your particular case with your doctor, but I agree with Bev. The only way I see that slapping would help you is if you had apnea (lapses in breathing). If you are experiensing respiratory distress and your O2 sats are low due to lung damage from cancer metastasis then that is a different story. My DH had many lung lesions and pulmonary effusion. The pulmonologist explained that the lung metastasis caused the lungs to be unable to expand due to scarring which caused the lungs to be stiff. The doctor ordered oxygen and fast acting liquid morphine to get him thru the the scary times. It was a tremendous help for him and I am glad he got it when he did.

[Guinevere]

Jeanette,
Even with the slaps providing you a distraction, you know it's pretty dangerous to have them do that because of the potential for bone breakage. I hope someone's able to get you a new working machine.

Bev, my reaction to codeine is violent vomiting and shaking. It makes the pea soup scene from "The Exorcist" look like a tiny burp. My docs thought that I might be able to take synthetic codeine but I had the same reaction so they told me to make it crystal clear that I shouldn't be given any form of codeine.

Atarax - they used to give me that when I would have an anaphylactic reaction to iodine or shellfish (it took a long time to figure out the cause. After a shot in the ER, they would send me home with Atarax and Benedryl. Worked like a charm! Now, they give me Prednisone and tell me to take Benadryl with it which made me think Atarax was off the market.

I've slept a good deal today but did manage to make a pot of pinto beans with DH helping me keep an eye on them. We made mashed potatoes (which didn't taste right to me), fried ham steak (which didn't taste right to me), sweet cornbread and homegrown ugly tomatoes (they always taste the best!) to go with the beans. It was delish but my pain ramped after me being on my feet so much. So, I'm on the daybed for the evening.

On a more somber note, it really does seem to me that the losses here are piling up faster than they were. So very discouraging and its making it hard for me to maintain an upbeat attitude. That's why I love this thread. I can get this out and know that it's understood and no one's going to try to "buck me up". Usually, it last for a short time and then, with prayer, I'm back to feeling like I can still have a good life. Love you all!

God bless ~
Gwen

[jeanette57]

hi fellow traverlors

today church was great. potluck was great- family time with brother (kids) and all the time
everyone was so happy I looked great getting hair.

I didn't tell them I couldn't get my Oxg above 79 - but worked hard and had extra Oxygen with me.

Interesting - neighbor called and asked to buy a pain pill- She dropped a board on her foot. I said sure, they are Tylenol over the counter. I don't take anything else. I told her after my caregiver took my pain meds - I gave them to family with safe to keep them.

Going to call doc early tomorrow. Hope all is great. Jeanette