mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

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jeanette57
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby jeanette57 » Mon Apr 07, 2014 7:54 pm

Ok will try again, went to send and all disappeared. Who knew?

I called the Onc Dr and he called back in 10 minutes! yahoo I am impressed. :lol: We went with Dilaudid. It has brought the pain down to a #4. I think it was a combo of going to large horse track - pushing walker on dirt, then visiting friends at garden expo and then getting a 10 minute back massage with all the warning of port - George - and such. It felt like heaven then, but oh my god, hell when I got home.

I don't know if I have cancer growing again as I have been off a month. My nose is almost healed and Wednesday I go back. It has been heaven to be off but can feel things new. I have a tumor (bone on the tip of my sternum) and it is getting larger. :roll:

Gwen, I am with you - I do not like going to infussion :roll: However, will do it until I get my house empty and then can give up the fight. I need to leave things (as family begging) with everything done and signed off. that is a LONG way off.

well mom brought over green popcycles, so life is good and I am going to sit on the patio and enjoy every nibble. :D
T3 N0 M0 -1-4-12 to 3-2013- NOW stage 4 terminal
mets Lungs & bone - halo on head (not to many can see unicorn horn)
chemo for life or until I quit

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Guinevere
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Guinevere » Tue Apr 08, 2014 10:19 pm

Ooh, Jeanette, what a wonderful treat! I love green popsicles! Yum! Glad you're able to be outside without paying for it in allergies or at least I hope that's the case.

Chemo day started on a weird note but it got better after that. They tried to draw my blood through my port which is how I've usually had it done. For some reason, it wouldn't draw but there was no problem injecting the Heparin. So, the phlebotomist had success accessing my one good vein on my left arm. Yea! Only one stick and no collapse! Anyhoo, later when I was in the doctors exam room, the nurse took my blood pressure and it was 106/72! :shock: No wonder we couldn't get blood! Why it was so low, I have no idea but it did explain to me not only the blood draw problem but the sluggishness that's hung on during my break. Last night, I started having a steady pain in the lower right quadrant of my abdomen. Nothing I did made it worse and nothing made it better. I briefly wondered if, somehow, I had developed another hernia. The hernia I have is on my stoma and has never caused me any pain so I was really unsure. Ibuprofen didn't make it better but the pain hasn't escalated either and I went on to sleep and figured it would be gone this morning - you know, just one of those things. Well, it wasn't hurting as much this morning but it still really hurt. I mentioned it to my onc and during her examination, she pressed on the area and I just about came up off the table! "Does that hurt?" "Uh, yeah, yeah it does" DH is over in his chair rolling his eyes. She probed a little more and said she could feel some kind of defect there but it didn't feel in anything was coming through the muscle like a hernia would. She's decided to move the next CT up to after my next round of chemo in two weeks. I think she wants to see what's going on in that area since I don't have an appendix, not much of my colon either. In fact, it's packed there with the omentum the surgeon removed from my stomach when I had my cancer surgery. She did ask if it felt like adhesion pain and I said, if it was, it was different than the adhesion pain I normally deal with. So, there's a mystery and it could be just one of those mysterious pains we stage 4s get that have no rhyme or reason. Image After that, the chemo went well if slower than usual. I know they did this because sometimes patients have reactions to chemo they've never had before when they go back on it. Praise the Lord that wasn't the case!

Last night, I was craving tacos and told DH while I was infusing that I thought I wanted tacos for lunch but had just about changed my mind and was going to get enchiladas when we walked into the restaurant and they had a Taco Tuesday special! They were exactly what I had been wanting! I probably won't have that craving again for a very long time and will most likely just have them at home when I do. Serendipity!

Went by son's house and he brought the Princess outside to see us but he had her all bundled up which she didn't like one bit and she didn't like the bright sun light either. I stayed in the car and talked to her through the rolled down window and she did smile at me before looking at her daddy with a frown and started trying to cover her eyes. He took her back inside and changed his shirt so none of her cells were on it and I got to hug him. It was wonderful! We have one more week to go before we can spend time with them. I should be feeling better by then and I fully plan on spending most of the day with my son and his daughter!

One more piece of good news - I lost 5 pounds in the last month! I was really glad to see that! Now that I'm back on steroids, it will probably pack back on but I'll take what I can get when I can get it. :wink:

It was a beautiful day here today too but the wind seemed like it was going to blow me off my feet! My hairdo definitely became a hair don't! :D Didn't help DH's or my allergies at all either.

Hope this was a day of blessings for you!

God bless ~
Gwen
Hrt atk - Feb 11
CRC4 DX - Apr 11
APR liver rsct, procto - Jul 11
Folfox/Avastin - Sep 11
Xeliri - Nov 11
Iritux - Jun 12
Break - Jan - Mar 13
Iritux - Mar 13
Stivarga - Aug 13
Folfiri - Oct 13
Exhausted treatment options - May 14

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tchan8888
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Location: San Francisco Bay Area

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby tchan8888 » Tue Apr 08, 2014 10:23 pm

Great news Gwen! What a full day.

Had a colonoscopy today. Was nervous because of the last time I had one .... Was funny, admitting nurse said, "Your young for a colonoscopy." .... I wish I would have got one a lot sooner .... Fortunately, all clear despite the concern with the PET/CT Scan last month.

Now, just wait and see to go back on FOLFIRI. On a break for now.

Blessings,

Tom
Tom, 49 now
12/12 Right Hemicolectomy 2X (29 days in hospital)
12/12 Stage IV: multiple distant LN; no organs
20X: FOLFIRI (stopped working)
8X: 5FU
8X: FOLFOX and Avastin
2016: Clinical trial pembrozilumab MSI high

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Guinevere
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Guinevere » Tue Apr 08, 2014 10:49 pm

Woohoo, Tom! I hope you did mention to her that you wish you had had the colonoscopy sooner. The more we talk about that aspect of testing, I think the better off folks will be. It's something they can think about and realize that colon and rectal cancers aren't just old folks' diseases.

God bless ~
Gwen
Hrt atk - Feb 11
CRC4 DX - Apr 11
APR liver rsct, procto - Jul 11
Folfox/Avastin - Sep 11
Xeliri - Nov 11
Iritux - Jun 12
Break - Jan - Mar 13
Iritux - Mar 13
Stivarga - Aug 13
Folfiri - Oct 13
Exhausted treatment options - May 14

jeanette57
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby jeanette57 » Wed Apr 09, 2014 2:44 am

yes a busy day. Went to lung doc with mom. She found out that her Esophagus issues harm her lungs. Wonderful with her COPD. :evil:
today was good day, but no food would stay with me. I made scramble fluffy eggs with bacon and toast, got 3 bites of eggs, one small bite bacon and 1 bite toast. My stomach closed. Then got a donut and was able to keep it down. Tried supper but puked it all up and now at 1 ish am whole body screaming trying to get down a glucerna. fighting to get some down. will try to drink the whole thing over the hours.

Well chemo tomorrow so trying to get some sleep. Oh well! hugs to all@!
T3 N0 M0 -1-4-12 to 3-2013- NOW stage 4 terminal
mets Lungs & bone - halo on head (not to many can see unicorn horn)
chemo for life or until I quit

skypup
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby skypup » Wed Apr 09, 2014 4:22 am

Just having a bit of nonsleep, and it is so nice to be able to check in here and see how you all are doing. You all mean a lot to me! Wishing everyone good things.

dianne052506
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby dianne052506 » Wed Apr 09, 2014 7:45 am

Gwen,
Low BP, unexpected weight loss, sluggishness, difficulty with blood draw - are you dehydrated? Or at least were you, before the infusion?
Take care of yourself so you can spend more time with that baby with the gorgeous grin!
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again

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Guinevere
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Location: NE TX

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Guinevere » Wed Apr 09, 2014 12:53 pm

That was my first thought, Diane but I make really sure on the day before chemo to hydrate, hydrate, hydrate so I don't have problems with the blood draw. In the past, it's been a problem and that's the solution that's worked the best until yesterday. I am also trying to stay hydrated no matter what's going on. To some extent, I think it also helps the hand/foot.
Hrt atk - Feb 11
CRC4 DX - Apr 11
APR liver rsct, procto - Jul 11
Folfox/Avastin - Sep 11
Xeliri - Nov 11
Iritux - Jun 12
Break - Jan - Mar 13
Iritux - Mar 13
Stivarga - Aug 13
Folfiri - Oct 13
Exhausted treatment options - May 14

jeanette57
Posts: 1004
Joined: Sun Mar 04, 2012 11:40 am

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby jeanette57 » Wed Apr 09, 2014 10:39 pm

CHEMO day- not a bad day but odd.
first was my CEA went from 17 to 57 with one month off chemo. :oops: The bone mets on my skill were larger. However thank you GOD that the bone in my skull has the cancer and not the brain. They are concerned about the pain on my back shoulder blades. They want an MRI but I am not to happy about this and we put off the decision for another few weeks. My kidneys failed with the contrast of last test.

Odd but happy to know. Not sure if it was for me or this will help any of you with lung mets. That hurt back Sunday was starting to cause lung issues. I was doing a 30 minute dry puking and it scared everyone. Then when I could get my self some air you could hear the lungs crackle. She they went into fast action. Happy with results but first thought they were killing me. I was told to jump up straight, hold onto the door with arms as high as I could get them. They did ?? thump therapy?? pounding on back with cupped hands and gave me a smoking - nebulizer machine - It was scary the crap that came up out of lungs. Clear but so much, It was kinda like choking - cough - spit - but in a few minutes all was well and I could breath well and no sounds in my lungs. They didn't want that water mucus in my lungs and were able to get it out fast. Who knew arm position was important? :?: I will try arms up high with my home unit. I am a blue bloater (lung doc's term).
Well I have 2 weeks to enjoy from cancer center. Hope to do some more tax stuff and try and find what is lost W2 form. They try to figure out or ?
T3 N0 M0 -1-4-12 to 3-2013- NOW stage 4 terminal
mets Lungs & bone - halo on head (not to many can see unicorn horn)
chemo for life or until I quit

dianne052506
Posts: 1651
Joined: Sun Nov 02, 2008 11:57 pm
Location: North Carolina

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby dianne052506 » Thu Apr 10, 2014 6:02 am

Jeanette,
How scary, but at least you got some relief for your lungs.
Since I had kidney failure after my last IV contrast for a CT scan, they have now said that if I must have contrast, then I need to get IV fluids immediately after and before as well if possible. Don't know if that would help you or not.
The things we have to put up with in order to try and survive.
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again

jeanette57
Posts: 1004
Joined: Sun Mar 04, 2012 11:40 am

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby jeanette57 » Thu Apr 10, 2014 12:11 pm

I had steroids so had little sleep. However had a great library book at home and read it all until 3 am then felt the need to shut eyes. I slept to 9 so did good. I am also happy that I got my taxes found (well except last years) but that is ok.

I will ask about the contrast and IV issue. I am dehydrated today so need to drink as much as possible. It would be hard to get much down, but I feel good so my body is getting use to the vecrtux (spell).

Early so may go do post office and then to bank and then to insurance - get mom to drive when I run out of energy :o
hope this Thursday all of you are well or holding on tight in this amazing journey. :) .
T3 N0 M0 -1-4-12 to 3-2013- NOW stage 4 terminal
mets Lungs & bone - halo on head (not to many can see unicorn horn)
chemo for life or until I quit

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Guinevere
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Location: NE TX

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Guinevere » Thu Apr 10, 2014 6:25 pm

Ugh! Disconnect day...started getting sick before it even time to leave for the cancer center. Took some Phenergan and it helped with that part. Got home, kept down a chicken salad sandwich and went to sleep for the afternoon. I guess par for the course but I've gone 6 weeks without having to deal with it. One new thing has cropped up - I'm not having to deal with constipation! I did have atropine before the Irinotecan infusion. So I guess it's just one of those weird things that seem to happen when you go back to what you were doing. I was just glad I hadn't developed an allergy during my break! I've read on this board that is something that can actually happen. Mystery pain was gone this morning but came back by the time I got home. :roll:

Jeanette, what you're dealing with sounds terrible!

You're all in my thoughts ~
Gwen
Hrt atk - Feb 11
CRC4 DX - Apr 11
APR liver rsct, procto - Jul 11
Folfox/Avastin - Sep 11
Xeliri - Nov 11
Iritux - Jun 12
Break - Jan - Mar 13
Iritux - Mar 13
Stivarga - Aug 13
Folfiri - Oct 13
Exhausted treatment options - May 14

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Guinevere
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Location: NE TX

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Guinevere » Fri Apr 11, 2014 11:05 am

For some reason, my tongue feels like I've eaten a jar of jalapenos! It's so sore, it actually woke me up this morning. In the "normal" course of events on Folfiri, the mouth sores wouldn't worsen until two days after disconnect. This is different. Boo! Anyhoo, I thought I'd share for anyone of the mets patients who took a break and then went back on the same chemo. It doesn't always run the same way it did.

God bless ~
Gwen

Can't believe that I forgot to mention that today is my 3rd cancerversary. As sick as I am, I'm feeling better than I did three years ago. I'm now going for the "gold star" - 5 years! I still have trouble believing I'm still having a pretty decent life while battling this horrible disease. You guys are a huge part of that and I can't thank you enough! <3
Hrt atk - Feb 11
CRC4 DX - Apr 11
APR liver rsct, procto - Jul 11
Folfox/Avastin - Sep 11
Xeliri - Nov 11
Iritux - Jun 12
Break - Jan - Mar 13
Iritux - Mar 13
Stivarga - Aug 13
Folfiri - Oct 13
Exhausted treatment options - May 14

dianne052506
Posts: 1651
Joined: Sun Nov 02, 2008 11:57 pm
Location: North Carolina

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby dianne052506 » Fri Apr 11, 2014 4:22 pm

Gwen,
Ask your onc or even your dentist for an Rx for oral lidocaine gel to put on the sores so you can eat without discomfort, and an Rx for oral triamcinolone (steroid) gel that you can dab on the sores at night and have significant relief by in the morning. These were two of my wonder drugs.
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again

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Guinevere
Posts: 3358
Joined: Tue Oct 11, 2011 4:19 pm
Location: NE TX

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Guinevere » Fri Apr 11, 2014 6:04 pm

Thanks, Diane. My sister got me some oral Lidocaine and I'm so very grateful!
Hrt atk - Feb 11
CRC4 DX - Apr 11
APR liver rsct, procto - Jul 11
Folfox/Avastin - Sep 11
Xeliri - Nov 11
Iritux - Jun 12
Break - Jan - Mar 13
Iritux - Mar 13
Stivarga - Aug 13
Folfiri - Oct 13
Exhausted treatment options - May 14


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