mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

[jeanette57]

I am loved! felt it! Thanks.

I am fuzzy - tried some new medication and basically am stoned. High quality but with my 91 allergies - we are taking it slow and low. I am finding it does help breathing. I also got some energy so cleaned out my bed - got a hospital bed in back room. I did moms birthday even though felt like sleeping.

Bev and group - this was shocking to me. The specialist from Israel said " in America the poor nutrition kills more cancer patients than the chemo drugs. YICKS - I am screwed as I have been enjoying any and all foods - sugar is by the pound (candy cakes) fruits and so goodie.

oh that's right "I am not getting out of this alive" so pass the donut please.

oh funny - my twelve yr old niece was so cute. While watching vampire movie "would you like to be a vampire?"
No - you lose all those you love and you never get to see GOD. Your only a virgin once (lost my drink). Oh, mom said once you lose it - it never comes back. As straight faced as I could, I agreed. She is a beauty so guess we are talking early about stuff like this! Good thing as mom was 15 when she gave birth to first child!

[PaulC]

Hello everyone, just checking in. You know, I come to this board every day, sometimes more than once, this is always the 1st thread I go to. To see how my fellow "stage IV'ers" are doing. You guys are an inspiration to me.

Well, I just finished treatment #10 of "the FOX" and his friend AVASTIN, and I gotta say THIS SH*T IS GETTING OLD! I suppose I shouldn't complain though. The worst side effect for me is the feeling that there's a circus run by demented little trolls in my stomach. They're jumping around, doing their little trolly thing. And that awful taste in my mouth.

I want to eat, like the other day, the tomatoes are starting to come in. So, I shuffle outside, doing my best Walter Brennan imitation, pick a ripe tomato, and think, I'll make a BLT! I love BLT's with a ripe tomato, and good, thick-sliced bacon. Anyways, I guess I should have known something was up when I started cooking the bacon? Hmmm, I like bacon, why is the smell of cooking bacon exciting those little trolls? But, I press on, I'm going to make a BLT and I'm going to like it! I assemble said sandwich, hey, that looks pretty good! Sit down, turn on the TV and I take a bite. I should have just gone down to the basement, get an old cardboard box, tear off a hunk, and chow down. God, it tasted awful. Actually, it tasted like, like nothing. No texture, no taste, nothing, so, my two dogs split a beautiful BLT.

And then there's smell-sensitivity? My dear wife, cleaning the house on Saturday, using the same cleaner on the hardwood floors that she's always used, never bothered me before. This is on Saturday, the day after disconnect, usually the worst day. I had to ask her to stop, the smell from the cleaner was like crack cocaine to the trolls, they were going nuts! They were having a party!

So, I don't eat for 5 days, I'm resigned to it. I force down the fruit/veg smoothies we make in the Nutri-Bullet but that's it. By Tuesday, today, my appetite is back and the taste is gone. The trolls have been banished for another week-and-a-half, be gone, insufferable little buggers. Today, I pigged-out on low mein noodles from a little take-out joint in West Philly that I found (I work in Philadelphia). On Thursday, I'll pickup a six-pack of Dogfish Brewery's 60-minute IPA and I'll be back, at least until next Wednesday, when the rolls return.

This weekend, I'm going to grill pork chops. I can grill a pork chop, my specialty. So good, make you want to get up and smack your momma!

This is the only place I can rant like that, you guys know what I'm talking about.

[Guinevere]

Jeanette! Yea! So glad to see you on here. Sorry y'all couldn't do the spa thing for your mom but it sounds like she had a lovely birthday nonetheless. The vampire conversation is hilarious if slightly disconcerting and will probably be one of those things the family laughs about for years to come.

Paul, welcome to the thread! Unfortunately, we're probably all too familiar with the weird tastes and smells that Folfox, Xelox, Xeliri or Folfiri can bring. Odor triggers for me were liquid fabric softeners, iceberg lettuce and my husband's hairspray! Even now that I've been off any chemo at all, I still have problems with the hairspray. Hope your pork chops taste like pork chops. I, too, have had my tastebuds all set for something and then it tasted like sawdust or cardboard or something equally tasteless. Sometimes, it's hard enough to make ourselves eat even when we know we need to without having to deal with food having no taste!

Onc visit today was okay but they couldn't get the blood to draw through my port again. Later, when my BP was taken, it 90/60! Crap! So, I'm back to monitoring my BP again and adjusting my BP meds accordingly. She also suggested that, instead of me walking back and forth from the front of my house to the back, that I try stretching exercises to help combat the fatigue that just hangs on like so many leeches. We did get to see the Princess who delights in saying "Hey!" We just had a good time but it wore us out! Two hour nap when we got home.

God bless ~
Gwen

[jeanette57]

the bag leaked so took shower and had mom come and fix my wounded foot. I noticed that I had a film in my mouth so guess that darn thrush is back. that is when things taste like cardboard. magic mouth and baking soda swishes again.

I have a 700 sq house now with 2 hospital beds. One in the living room and the other in the bedroom. Nice as the one in bd has it possible to lay on right side (short time). tomorrow is ONc doc and will see what going on with swelling. I am a beached whale-- middle bloated and legs around 80 pds each or more. So hard to get them in bed. darn it!

however things are good and looking at dorm sales to get bed toppers cheap (UofA) starts soon. Hope all of u have a great week. hugs - smiles and lots of light.

[Guinevere]

Jeanette, I hope you're getting some relief from the thrush. The year I was diagnosed, I got it 4 times! Hate that stuff! Magic Mouthwash is definitely a must.

I have a new stabbing back pain that directly behind my liver. Ibuprofen and Flexeril didn't touch it last night so had to take Tramadol and ended up waking up at 4 a.m. and couldn't get back to sleep. Of course, this is day my uncle and cousin are coming to visit. Oh well...

I hope everyone's having a decent day.

God bless ~
Gwen

[pog451]

THIS SH*T IS GETTING OLD!

Word.

[jeanette57]

I know I have been foggy and thought it was a side effect. Yesterday they took my oxygen level before the chemo and it was 66 - they really got excited about that - xray was scary when I saw it. hum lookls like I only have small part of left lung left. I was on Oxygen 3 number. I am at home 1.5 - now I know what those headaches are about. Darn cancer trying to teach me another bump on this trip. bump - bumps - bump

I did not know the extent of the foggy brain until around 9ish at night I awoke in my own bed with mom sleeping in the back room (freezing). I don 't know how I got there or why mom was here. She said I did not talk - barely walked and my eyes were glazed. she left my outfit on - took off shoes and dumped me in bed. at 90 mom is doing a great job- but her eyes were red so know she was crying sometimes when I was out.

I wish this journey did not HURT those we love! It is that hurt that kills me and flood me with tears. Their pain is so much worst! I am at peace but they struggle so much. sorry it is a teary day to process all this bumps -looking for some straight roads ahead.

[pollo65]

Hi y'all I am back after another week battling pancreatitis, I am beginning to think this is what will end this rocky journey. If you have ever had this you know how painful and debilitating it is, I joke with friends that whenever I start to gain too much weight I get hit with this and slim right down.
Do any of you long timers feel like your body is just plain wearing out. I am still on chemo break and haven't bounced back, just feeling slugglish. Which of course leads me to think IT is progressing, I have a scan next month so I suppose the scan will tell the tale.
Jeanette I was thinking about how this damn disease effects those we love, I feel I can deal fairly well with my disease but I really notice how it effects those close to me.
Glad to be back among the LIVING,
pollo 65

[jeanette57]

just electcuted my mouth. wow what a jolt!
that Oxyplatlip (spell) has left me foggy and I forgot NO COLD - took a slug of coconut water cold from refrig and YOU know the feeling...electric

I am still foggy from Wednesday and low 66 air count on my lungs. Seems I have water on my left side and need to figure out how to get it up as much as I can.
however in 2 treatments of this Oxy-- my CEA went down 30pts. Yahoo


Hugs to all of you!!!!!!!! Yes I do know how all of this works. Just one foot in front of the other. Day by Day!

[jeanette57]

Pillo 65

I thank God that I '''failed''' Weight Watchers over and over and over! That 100 pd weight loss was easy with cancer!

without the extra weight to loose, I would never have made it this far. NOW if my body would listen to me. I want a big butt! Yup.
However all the fat went to the front and no butt - flat and painful to sit on! What the hell happened doctor?????

fat distribution to protect your major organs. what - who gave my darn body that permission! NOT me I want a big butt to sit on! not happy with this flat little nothing. thinking of buying padded underwear....

[eburkett1911]

Hi all. This is a question for the stage 4 veterans or anyone who has had problems with Stivarga. I've only been taking 2 pills a day for two days now. The second night I had chest tightness and noticeable hoarseness in my voice. I also felt very itchy and my ears were hot and red. The on call doc at NW told me to hold off on taking more until I see the doc on Monday. Has anyone been or heard of someone having problems with Stivarga this early on? I'm kind of at a freaking out point right now because Stivarga was one of my last options besides trying Xeloda. I've burned through all other traditional chemo options already. Didn't think it would happen this fast. If anyone has words of wisdom or comfort I am certainly all ears!!

Freakin out

[ConnieSPK]

Jeanette....you are a hoot (as my Mom would say), the way you describe the oxal "zings". I guess I find your descriptions humorous because it sounds so much like what I did when on that particular cocktail. Hang in there,stay away from cold stuff and find a butt cushion! (maybe memory foam?)

Pollo65...I'm sorry you've been feeling bad, I wish we could all just HUG each other.

Connie K.

[mdezdez]

Greetings all,
My 42 year old wife was diagnosed with stage 4 Colon Cancer in February of this year. She had METS in her liver and over 30 spots on both lungs. Lymph nodes also showed uptake on the PET scan from her collar bones down to her abdomen.

She did 2 cycles of FOLOFIRI with Avastin and then took a chemo break in late May. The May CT scan showed shrinkage of the primary tumour as well as a reduction in size of the METS in her lungs and liver.

Since the Chemo break she has had escalating back and abdominal pain, to the extent that she ended up in the ER because we were concerned about her being obstructed or having a UTI.

We have since gotten a new scan and it shows more nodules in the lungs, and bigger ones since the May CT. Liver was stable, but there is a new 2.5cm mass in her abdomen and enlarged lymph nodes in her abdomen are now big enough to measure on the CT.

Pain management has been the struggle the past 4 weeks, with Tylenol 3s and then Dilauded. She is finally at a dose of the long lasting Dilauded that can manage the pain, but she is fighting constipation and spending 20-22 hours a day in bed. She started on Xeloda (1500mg twice daily) chemotherapy for a two week cycle a couple days ago.

All my reading leads me to believe these are not good signs for disease progression. The blood work looks pretty good with no real issues with the liver.

I know she has advanced Stage 4, but I'm trying to get a handle on if she has years or months left to live. When we initially got the diagnosis, the Oncologist said she had years, but not decades. I'm worried, given the pain, lack of appetite, weight loss and rapid progression in growth (only 8 weeks between scans and new mass) she may have months and not years.

I'm prepared for everything, and want to be supportive of her desire to be able to be cured, but need to temper that with what is best for our 7 year old daughter. Any insight or experience from the folks here would be great.

Dez

[skypup]

Hi Dez,

So sorry about your wife's diagnosis, but I'm glad you found yourself here. There are so many good, good people here and together we have a wealth of experience to share.

As to your DW's prognosis, all I can say is that I was diagnosed over 6 years ago and became inoperable over 4 years ago. My disease was not as advanced as your wife's, but the one thing I have learned from my own path and in walking alongside others here is that cancer is quite unpredictable. People can be seemingly toward the end and then have much decent time left. Sadly, as you may have seen from some of the posts current right now, cancer can sneak in and take us when we aren't expecting, as well.

That is not much of an answer, I know, yet I hope it helps the two of you just keep putting one foot in front of the other until the forest clears a bit.

[mdezdez]

Hi Dez,

So sorry about your wife's diagnosis, but I'm glad you found yourself here. There are so many good, good people here and together we have a wealth of experience to share.

As to your DW's prognosis, all I can say is that I was diagnosed over 6 years ago and became inoperable over 4 years ago. My disease was not as advanced as your wife's, but the one thing I have learned from my own path and in walking alongside others here is that cancer is quite unpredictable. People can be seemingly toward the end and then have much decent time left. Sadly, as you may have seen from some of the posts current right now, cancer can sneak in and take us when we aren't expecting, as well.

That is not much of an answer, I know, yet I hope it helps the two of you just keep putting one foot in front of the other until the forest clears a bit.

That's pretty much why I'm here asking the question in the first place. Looking for more information from folks of a similar age and similar diagnosis. Neither my wife or I are very good at dealing with things that are unpredictable. This time last year she was in the best shape of her life, now she's fighting for her life. Pretty damn fast turn around.

With the oncologist we keep asking about other treatments as we find them, he keeps coming back to chemo, and how, given the "widely metastatic" nature of her cancer, there is nothing curative in modern medicine. Only surgery if she becomes obstructed or liver function suffers.

No fun.

Dez