mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

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Ashlee H.
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Ashlee H. » Sat Apr 05, 2014 11:54 pm

jeanette57 wrote:

Question - any one have hair grow back. I have some peach fuzz but balk spots on some of head. wonder if it will grow back with bald spots. Should I lotion my head? so nice to think I may see hair again.

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My hair has always thinned on chemo. And, when I was off chemo, it always grew back. But the texture was the same (bone straight) and no change in hair color. However, last year, I basically went bald with the chemo. It took a long while for it to start growing. I did not put lotion on my head. I know a lot of hair experts recommend you do a complete shave on the head, but I did not. I did cut what little was left and just waited for all the hair to grow back. The bangs took the longest to grow in. Since going bald...the hair growing back has some wave to it. Still no change in hair color, and no grey. I'm so glad all these celebrities have cut their hair short because it makes it look like I have it cut this short on purpose.
Stage IV w/liver met dx 7-1-09
KRAS Mutant
Member of the HIPECKERS (2011) and OLYMPHIANS (2012)
2/14 - standard chemo has stopped working
3/14 - Stivarga
LIVE LIFE!

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

Postby jeanette57 » Sun Apr 06, 2014 10:48 am

Thanks Ashley

I have been bald for over a year so I forgot what it felt like to have hair. I noticed that one the side I lay on is smooth and bald as where the non-layed side is peach fuzz. I note that that fuzz is gray but heck, can dye it pink or blue to match my great nieces favorite color.

I am really bummed about my body right now. I was going through pictures of non cancer me. Nice big fat me and now getting to bones. it is so slow 2 years so guess I never noticed. Lost most 80 percent of muscles, only have fat around tummy with legs and arms so skinny. Hate to look at self but oh well, this journey is going to end some day so I am on the ride till then.
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

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

Postby drebay » Sun Apr 06, 2014 1:34 pm

Gwen

I hope you feel better and that you get to see The Princess soon.
6/13 Age 45 mom of 11 and 13 yr old DX Stage IV liver mets
7/13 colon surgery
9/13 Folfox
11/13 Xeliri
3/14 more liver mets
4/14 Lung Met
4/14 Liver resect delayed;lung resect done
5/14 Surg not an option
9/14 Stivarga
3/15 Back to IV Chemo
6/15 Avastin
9/15 In Clinical Trial

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

Postby skypup » Sun Apr 06, 2014 2:29 pm

Something only us long-termers can really understand: the chipping away of what we are able to do.

This morning I went to sing with my church choir and had to sit through much of the service for the first time. I realized this may be yet another step along the path, though I may recover if the pain stabilizes again (the cancer itself isn't that bad yet). But for now, at least, it is one more separation between the me I am now and the person I used to be, and one more distancing agent between me and the "healthy" world. It's just so weird to have this happening to me--know what I mean?

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

Postby dianne052506 » Sun Apr 06, 2014 6:46 pm

Skypup,
I so understand. There are now so many things that I either don't do, or don't do without help.
I can only drive myself to appointments about 1/3 of the time.
My husband has had to start doing almost all the grocery shopping for us, with my parents picking up emergency stuff as needed. My grocery store is only 1 mile from my house. You'd think this would be something I could do, but it just drains me.
I know I've been in the hospital twice already this year (and really sick one other time in addition), but I no longer have the energy to cook, either. I've never been a great cook, but I always enjoyed it. Now that eating is problematic, I don't enjoy the cooking or the eating!
I've always had short hair, which required a haircut every 2 weeks to keep it at its best. I have now had 3 haircuts this year, total.
The worst part is the time I can't spend with my daughter. She's been on two college tours so far this year, with two more scheduled while she is on spring break during Easter Week. So far, I've had to skip the tours and just let her go with her dad. It breaks my heart but there is no way I could keep up. I've looked a getting a wheelchair or scooter, but they don't seem very feasible for all the stairs and brick sidewalks I see on the virtual tours.

And Jeanette, I really know what you mean about changes to your body. I've dropped over 25 pounds since November. When I look at myself getting dressed, I feel like my thighs and upper arms look like parts of a plucked chicken -- and it's a very scrawny plucked chicken!
Just trying to get through another day,
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

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

Postby skypup » Sun Apr 06, 2014 8:48 pm

Dianne, my heart breaks reading about how hard daily life has gotten for you. You are one of my heroes, you know, having gotten so much good time out of your clinical trial and having been smart enough to get into it in the first place. I'm glad you have your husband to help with the shopping, etc. Hard to give up our independence... aaawww... (((Dianne))) <-- beautiful, scrawny or not!

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Bev G
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Bev G » Sun Apr 06, 2014 8:54 pm

((((Skypuppy and Dianne))))

Love you both.

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

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

Postby jeanette57 » Sun Apr 06, 2014 10:16 pm

I love this group!

Today went out to a organic garden feasible and got a back massage. I was so sore from doing tax paper work. Well, hell I am in pain tonight. It hurts and I don't want anything to eat to take pain pills. Called family and asked them to send some BBQ as they were having some for party. It is 8is pm and no food. I nibbled on cheese. if the one nephew comes I can't have any pain meds out as he would be crying - begging for them all. (another story)

I am feeling down, sick, pain in back and neck and now getting hungry. I guess a can of soup is easy to fix. whine whine and more whining. :(
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

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

Postby southernkiwi » Mon Apr 07, 2014 12:26 am

Hi all, I'm also feeling the fade. I'd like to think that it's all in my head, and that if I just get over myself, I'll be OK. But it's not all in my head, and sooner or later (I'm hoping, later) there will be a whole set of realities that I don't want to deal with. In the meantime, my world is getting smaller and smaller, whittled and chipped away. That even happens within the course of a day: it starts well, but I feel like I'm crumbling by the end of it. At least I can still seize the morning. Cheers, Carolyn
Southernkiwi
Diagnosed Apr08; MutYH Associated Polyposis
Surgery (J-pouch, ileostomy) & anastomotic leak Jul08
Chemo (XELOX) Nov08-Apr09
Ileostomy closure May 2010
Liver met 2012
Inoperable lung mets April 2013
And liver and chest wall mets Aug 2013

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pollo65
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby pollo65 » Mon Apr 07, 2014 8:52 am

Everybody, I totally understand. I still make plans in the morning to do a myriad things and probably get two done and run out of steam. I have always been an avid gardener but now I have three tubs with veggies planted and that is it. I purposely bought a home with a BIG back yard which has now turned into a jungle. Will probably retire on my birthday in June, I fear I am beginning to do a less than adequate job at times I went shopping yesterday and that finished it for the day. Yes, world seems to be shrinking, though I must admit that I am not, I have maintained my weight. Sometimes I really think I am no longer myself just a lousy replica. Ah well I know that I am in it for the long haul so I guess I need to quit whining,
Love y'all
pollo 65
CC 1/6/09
r. hemi-colectomy 1/7/09
32Ln biopsied, 28 positive
met to aorta
chemo 12 rounds
done 9/09 3 scans clear
1/11 1 met to aorta
micro cluster to peritoneum
4/11 / 9/11 scan clear
4/12 scan clear
10/12 scan clear
Iri+avastin
chemo break

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Ashlee H.
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Ashlee H. » Mon Apr 07, 2014 10:56 am

It's so nice to know I'm not the only one who has a problem getting things done. Friends (married couple) come by once a month to see if anything needs to be done on the outside because I just can't deal with yard work these days. I don't have a lot to maintain, but just picking fruit off a tree or hosing down the driveway can send me back to bed. I might be able to squeeze in two things a day - but many times, just get one done - so on that day, is it more important I go to the bank or post office? I hardly ever send birthday/anniversary/etc. cards anymore - just takes too much time and concentration. It certainly is a balancing act. On doctor appt. days, since I've had to crawl out of bed and get dressed anyway I tend to do errands along my route, knowing I'll be taking a long nap that afternoon. Friends call, and although I love hearing from them, after 5 minutes, I just so tired that I need to end the conversation. It's like the battery in my brain needs to be changed - heck the battery for my whole body needs to be changed. Chemo has taken so much from me - from all of us. Many days, when I'm not sleeping, I'm just watching TV. Many times, when it goes to a commercial, I couldn't tell you the TV program I'm watching. I don't know if it is truly chemo brain, or I just don't have the desire to remember anything. I have to leave notes for myself all the time reminding me of things I've done or still need to do.
Stage IV w/liver met dx 7-1-09
KRAS Mutant
Member of the HIPECKERS (2011) and OLYMPHIANS (2012)
2/14 - standard chemo has stopped working
3/14 - Stivarga
LIVE LIFE!

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 » Mon Apr 07, 2014 11:05 am

Back at the onc's office today for a CT scan and asked to see my onc for just a minute, even though I have an appt tomorrow. Told him the ribcage pain was getting unbearable over the weekend, and if the CT scan didn't show tumors as a cause, then we needed to do a bone scan and look for mets. He just touched my side, and when I jumped, he started feeling around. Dx: rib fracture, caused by this incessant cough, and weakened bone due to radiation! Treatment: prednisone and painkillers, both of which I hate.
He could look at the CT but didn't want to attempt a formal read, so I'll see him again tomorrow since I'll probably need fluids again by then anyway. He said there is quite a bit of inflammation still where I had the pneumonia and the partial lung collapse in February. To me, that means, I didn't get a lot of benefit out of the radiation. It was supposed to shrink the one tumor that was pressing on an airway. I won't do general radiation again.
For the past 18 months, all my CT scans were done through the clinical trial, so my onc had no basis for comparison. (Same radiology group reading the scans, though, so they should have access.) Still, my onc feels we have to start talking about how we're going to treat the disease again. I keep dreaming that one day they'll scan and say there is significant shrinkage as a delayed effect from the trial. Big dreams, no basis in reality!
Love to you all,
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 » Mon Apr 07, 2014 12:12 pm

oh my feeling really sick, bad rib pain and it goes up the neck. I have been doing oxie 5 mg with Tylenol but it isn't only mutting it down to a 6 level. Called and asked for something more. was going with mom to her heart doc but called her friend to go with her. It is another day in bed.. ouch! How do you guys stand the pain../
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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Joined: Mon Dec 17, 2012 12:12 pm

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby skypup » Mon Apr 07, 2014 2:19 pm

Jeanette, so sorry you are having so much pain! I have to take 10mg oxycodone (no acetaminophen) to manage pain. Is this pain that you have had before? Is it cancer-related?

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

Postby Guinevere » Mon Apr 07, 2014 5:44 pm

I was thrilled to see Skypup posting! Last night as I was praying, you came to my mind and I was wondering how you are. Sad to read about your shrinking world. I guess it happens to all of us who are in the stage IV boat. I find myself feeling up to doing less and less as the days go on. The grocery store is two blocks away but I haven't been in there in over a month! I will say that mouth has healed and my feet are doing a lot better. My hands haven't healed as well as my feet but I use them more. That's been the biggest boon of the chemo break.

One more week to go before I can get my hands on the Princess. Son said to call him and he would come out on the porch with so we can at least see them both. We may just do that. :wink:

Tomorrow, chemo starts again. I just hope I handle it as well ad I have in the past.

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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