mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

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pollo65
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Location: central valley, calif

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby pollo65 » Sun Sep 21, 2014 2:13 pm

Skypup,
Your scan seems allot like mine, sort of in a holding pattern. Still a win!
Gwen, we so miss you, praying for you!
Does anyone have a way of contacting Gwen?
I have begun to get a little afraid to come here for fear of finding bad news.
Please everyone take care of yourselves and remember it scares us when we don't hear from you.
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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Bev G
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Facebook Username: Bev Golde
Location: Quechee, VT

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Bev G » Sun Sep 21, 2014 3:15 pm

Skypuppy. oh my, so glad to hear your scan results, and very glad you onc is dropping the iri. This is a really bg relief. Love you so.

I too am really worried about our Gwen. I am going to see if she's checked in on FB. I am out of town and out of the loop.

Love to all of you.

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

kpjpmom
Posts: 197
Joined: Sat Nov 26, 2011 10:27 pm

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby kpjpmom » Sun Sep 21, 2014 3:30 pm

Skypup I am so glad that you get to get off the "I run to the can" as Gwen would say! I hated that stuff, but it did do its job for me.it was much better than Folfox for me, so I am glad it was available. It has been a year since I was on it. I am missing Gwen so much and very concerned about her. I miss it when I don't see my "old" friends on here. I do not post much, but have followed Gwen, Bev, Skypup, CR guy, Skifletch, Brownbager and others here for the past three and half years. We are a family her and it hurts when one of us is hurting or missing. I hope all is well with our Gwen. I have a scan on Tuesday and meet with the oncologist the same day, a first for me in these years. Usually I have to wait for the results. Thankful for that as the anxiety is always high. I know it does no good to be anxious as it will be what it is, but it just is a trying time before scans. Pollo I am glad that you are stable too! Take care everyone!
kpjpmom
DX March 2011 stg 3 cc
Kidney cancer May 2011
Folfox 6months (12 rnds)
It's Back! October 2012 colon resection, kidney removed.FOLFIRI/Erbitux starts Jan.2013
Completed FOLFIRI June 2013, Erbitux continues
March 2015 Met to spine. Radiation 15 treatments
Folfri, 5fu dropped after 3x, Erbitux and Iri continued CEA rising. Moved to
Folfox, Xeloda,Avastin until Feb. 2016 oxilap. Neuropathy returns.
Xeloda,Avastin continues.

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

Postby jacekica » Mon Sep 22, 2014 12:28 am

Dear Skypup - I am so happy happy happy for your scan result, it is wonderful news. Finally something very good to hear.
Dx 2/11
surgery 5/11, T2N0MX, G2, SRC rectal ca, 22 cm removed
CT- numerous mets in abdomen - LN, 2 big ones on pancreas, one penetrated right urether. Surgery, they just take samples for PHD, 6 roundds 5FU, refuse further chemos

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

Postby skypup » Mon Sep 22, 2014 2:17 am

Thank you, everyone. You all mean so much to me, I just don't know how I'd manage without our community.

Jasminka, how are you doing? (((Hug)))

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

Postby Sharona » Mon Sep 22, 2014 5:49 am

Skypup,
So good to hear the news!

Gwen, praying that you are having computer problems. Hope to her from you soon.

Hugs to alll
Sharon
Dx CRC mets to lung, brain
Craniotomy 11/12
CyberKnife 12/12
colostomy
FOLFIRI, FOLFIRI, avastin, Zaltrap
Stivarga
Multiple brain mets.
WBR and pallative pelvic radiation
Hospice 1/21/15
http://www.caringbridge.org/visit/sharonrauch

jacekica
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Facebook Username: jasminka marout

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby jacekica » Tue Sep 23, 2014 2:06 am

Daer Gwen, still very anxious about you, hope you are without computer and pain free.......
Pollo - I am so happy for stable scan result.

Dear Skypup, I am in pain, I finished radiations today but I have more pain than before in my spine. They radiate pelvis and hips, I hope spine is in this field also. One nurse from UK told my friends that it is what is expected, and after 14 days it will ease the pain. I asked today while on radiation but they say they really don't know anything about that, that as they know relieve happens almost immediately. So I don't know how I am, my other bones arre alo painful - specialy sternum and ribs, spine in thoracica part and in lumbal part. I am so unhappy when it hurts so much, and it is difficult to work in such condition, fortunately I can work my job, it is in laboratory and it is nice. Only, I don't know how long I be able to WALK to work, I work on the top of a hill so it is difficult to pas so many stears...
Dx 2/11
surgery 5/11, T2N0MX, G2, SRC rectal ca, 22 cm removed
CT- numerous mets in abdomen - LN, 2 big ones on pancreas, one penetrated right urether. Surgery, they just take samples for PHD, 6 roundds 5FU, refuse further chemos

skypup
Posts: 2598
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby skypup » Tue Sep 23, 2014 11:55 pm

Ah, jacekica, I am very sad to read you are in such pain still. I feel you are one of the strongest people here, still working, having to work with a medical system that isn't always supporting you effectively. I so wish you comfort and ease. ((Hug))

By the way, I looked your city up on the web-- it looks beautiful! In a perfect world, I'd come visit!

jacekica
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Facebook Username: jasminka marout

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby jacekica » Wed Sep 24, 2014 2:16 am

Skypup, yes not only Zagreb, the capital where I live, all my little country is so versatile and nice, only government is so corrupted and steel all they can so we people live poorly. In perfect world where there is law and order and we are helathy - well, we will be travelling and meeting in different countries.
Today pain is less, I started to take diazepam, doc in emergency help told me to take it to relax muscles and so ease the pain in bones.
Today my onc told me she will look scintigrafic result and decide which part to radiate next - shoulders, sternum, and perhaps spine - for ribs I am not sure, I have numerous mets. So this week is without radiation, machine is on service till Monday.
Thank you for compassion.
Dx 2/11
surgery 5/11, T2N0MX, G2, SRC rectal ca, 22 cm removed
CT- numerous mets in abdomen - LN, 2 big ones on pancreas, one penetrated right urether. Surgery, they just take samples for PHD, 6 roundds 5FU, refuse further chemos

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Sophy
Posts: 252
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Location: New Zealand

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Sophy » Wed Sep 24, 2014 4:45 am

Jacekica, so sorry to hear that your pain isn't being effectively managed. I don't know if it would help you but I have found that the celebrex which I am taking with Xeloda (like the Adapt trial) is helping a lot with my pain from lung surgeries. Before the celebrex I had frequent stabbing pains in my chest and ribs but since starting Celebrex the pains have almost gone away. Perhaps it would work for you too?

Great that your scan had some good news mixed in among the bad, Skypup. I have just taken a picture of my two dogs, 11year old Dora and her great niece Poppy who is one. I will try to post a picture to show off how pretty they are, both are blenheim cavalier king charles spaniels and definitely blessed with good looks and not brains.

Gwen is in my heart like she is in the heart of so many other people all over the world. I have a heavy heart as I think of her suffering and the suffering of all her friends here when she leaves us.

Verbena, hope your digestion is processing things properly again. It was a beautiful spring day here in Wellington too and when I picked up my 11 year old from school she proudly told me that her hockey team had come 7th out of the 17 schools in todays tournament. Not a very impressive result but her school only started teaching hockey this term so they were all beginners.

Wishing everyone here a week full of the enjoyment of life and with pain controlled as much as it can be.

Sophy
dx T3N1M0 Feb 11 when children age 11, 7 and 2
Xeloda/rad March 11, LAR June 11 temp ileo
Xelox 6 rounds, NED
Lung mets Oct 13
Laser surgery Germany Jan 14. 3 mets left lung.
Laser surgery UK Jun and Aug 14 one met each lung, NED
Aug 14 Started Xeloda and Celebrex (ADAPT)
June 2020 CT shows nodule, bronchoscopy shows scar tissue, still NED
Dec 2020 stopping Chemo

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Frenchie's Wife
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Joined: Sat May 04, 2013 1:01 pm
Location: Alberta, Canada

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Frenchie's Wife » Wed Sep 24, 2014 5:40 pm

I think my oncologist, Dr Gloom and Doom jinksed me. I can not believe how much energy I have lost these past few weeks. I went from literally having so much energy that I couldn't sit still, to dragging myself out of bed to do my basic household chores.( yes, my wife has me trained to do this) it seems as if that quack turned off a switch or something in me. I haven't changed my diet in any way or did anything different. I still live on Boost and Ensure meal supplements. The change has been so quick and drastic it has me baffled. I had to run across the street to make the light recently and could hardly catch my breath when I got to the other side. Last month I was walking my dog 2 miles a day, now we go around the block. (Big block, small dog). I am hoping it's just a temporary thing and my energy comes back soon.
Caregiver to DH 59 yr, male, Stage IV at Dx
Dx Sept 2009
Liver,bladder mets, 5 surgeries
Lots of chemo
Inoperable lung mets nov 2013
Stopped all treatments in February 2014 due to QOL issues
I am in God's hands now !!
Feb 2015 - too many new mets to count !
At peace July 9, 2017

jacekica
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Facebook Username: jasminka marout

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby jacekica » Thu Sep 25, 2014 12:10 am

Sophy, thank you for Celebrex, I just read that it exists under the same name in my country, so I will ask my oncologist if it can help me considerind her exoerience with it. Now I am better with all I take after I add (by docs order) diazepam, it really relaxed my muscles and ease my pain.
Hope Gwen is without pain and suffering.......hope but still am concerned a lot about her.
Dx 2/11
surgery 5/11, T2N0MX, G2, SRC rectal ca, 22 cm removed
CT- numerous mets in abdomen - LN, 2 big ones on pancreas, one penetrated right urether. Surgery, they just take samples for PHD, 6 roundds 5FU, refuse further chemos

skypup
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Joined: Mon Dec 17, 2012 12:12 pm

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby skypup » Thu Sep 25, 2014 12:30 am

jacekica, just want you to know (if you don't) that there is a moderate drug interaction between celebrex and narcotic pain meds. Seems the celebrex causes a higher level of the pain med to stay in the blood stream. Just something to be aware of.

Frenchie, I am hoping that the doldrums pass!!!

jacekica
Posts: 733
Joined: Sun Aug 05, 2012 12:43 pm
Facebook Username: jasminka marout

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby jacekica » Thu Sep 25, 2014 1:51 am

Than you Skypup, certainly something to be careful, maybe it is the reason they didn't mentioned it to me, although now I take tramadol with fentanyl patch and they say with patches there is forbidden to take any opioid analgetic. And doc in Emergeny med told me to take it together with diazepam. Truth is - it is not important in such times, my main job is to ease the pain, I don't think can ruin something inside of me so I will have some side effects. I am really low now so I just wanted to stay on my feet no bedridden with diapers and not be able to do not even a little thing.
Dx 2/11
surgery 5/11, T2N0MX, G2, SRC rectal ca, 22 cm removed
CT- numerous mets in abdomen - LN, 2 big ones on pancreas, one penetrated right urether. Surgery, they just take samples for PHD, 6 roundds 5FU, refuse further chemos

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Frenchie's Wife
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Joined: Sat May 04, 2013 1:01 pm
Location: Alberta, Canada

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Frenchie's Wife » Thu Sep 25, 2014 7:23 am

Skypup

I am hoping it has something to do with nutrition. I have an appointment with a nutritionalist next week. I can't force myself to eat but there may be more supplements I can take to bring my energy level back. Does anyone have any suggestions regarding supplements? It has to be something I can drink or swallow, anything I eat upsets my stomach.
Caregiver to DH 59 yr, male, Stage IV at Dx
Dx Sept 2009
Liver,bladder mets, 5 surgeries
Lots of chemo
Inoperable lung mets nov 2013
Stopped all treatments in February 2014 due to QOL issues
I am in God's hands now !!
Feb 2015 - too many new mets to count !
At peace July 9, 2017


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