mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

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Rubyslipperz1
Posts: 45
Joined: Sun Jan 19, 2014 4:46 am
Location: Chicago Area

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Rubyslipperz1 » Sun Mar 15, 2015 11:03 pm

Hi all! Rubyslipperz girl here just checking in. Back on chemo again and needed a little cheering up so I finally read a book a friend sent me a while ago. Have any of you read "On the Far Side of the Curve" by Wayne Cook? It's a book about his journey as a stage IV colon cancer survivor. It's an encouraging light read if you ever feel the need for a little Stage IV encouragement. He was diagnosed in 2003 and published his book in 2009. I googled tonight and it looks like he passed away in 2012. As someone who loves to hear stories about people making it past 3-5 years, I really enjoyed the book. Just throwing it out there in case anyone else could use a pick me up.

Have a great week!
38 F mom DX 12/13
Stage IV CC w/ mets to liver,lung,& lymph nodes
10 rounds chemo
7/11-failed liver resect but removed tumors in colon and lymph nodes
10-11/14-SIRT
11/14-1/15-travel-Palooza
3/15- chemo folfiri and Avastin (every 2 weeks 4 life)
7/15-emergency back surgery
2016-Folfiri/Avastin e/o week took 2 month break and cancer thanked me by spreading to lungs, pancreatic lymph nodes and increased +30 tumors to liver

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

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby kpjpmom » Mon Mar 16, 2015 5:58 am

Hello fellow travelers,
I have been awake for hours icing down my lower back trying to get pain in a better place. I now have met/mets in my spine. I will know more as we see doctors this week. I was admitted to the hospital on Wednesday with pain to my tailbone that had increased over the last 5 week. We had been taking care of my father in law who is very ill. I thought the pain might be coming from sitting in those dad gum chairs at hospitals. Anyway, the pain increased so I went for and xray. GP said no mets and needed PT. Pain continued for 1 day and I mentioned pain at my 8 month lab draw for oncologist appointment. Thank goodness for Oncology nurses. She advised me to let my oncologist know my problems. Long story short, he admitted me for testing and found tumor in tailbone.
Pain meds are on board around the clock and I should see the radiologist on Tuesday to start radiation to the spine. Chemo to follow, Oncologist says. We will see what he offers. I am in a place where I want to choose quality over quanity. I only have one kidney left and it is showing signs of damage. I do not want chemo until I die. I want pain relief in the best possible ways so that I can enjoy the things I love without being so sick from chemo. I pray this will be possible. Thinking out loud here this morning.
I feel I am turning a corner in my journey. I feel the need to get things clarified and down so my family will have what they need to continue on. My friends and family, tell me I can fight this, I can beat this once again. I just don't know if I have the emotional stamina to do this. Besides, its me doing the work and them coaching on the sidelines, not doing the actual treatments. Thanks for listening to my wanderings. Take care fellow 4's.
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.

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby skypup » Mon Mar 16, 2015 7:05 am

Jeez, kpjpmom, we are in the same place. I had a really bad pain flair-up last week and hope to see the doc today. I just about have life's loose ends tied up, but this flair reminded me I better get onto those last details.

It helps to know someone understands. Thank you for writing in.

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pollo65
Posts: 1564
Joined: Thu May 20, 2010 3:11 pm
Facebook Username: pollo2
Location: central valley, calif

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby pollo65 » Mon Mar 16, 2015 11:58 am

Sky, kpjpmom,
It seems like we are all in the same leaky boat. Just thinking about my old dog and tying lose ends together. This part of the journey is becoming a bit surreal, I am so glad that I have this thread to come to. Glad I have a community of friends who understand.
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

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

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby kpjpmom » Tue Mar 17, 2015 8:13 am

Thanks girls (Pollo/Skypup). I am having issues now with not being able to pass stool from my partially paralyzed bottom. They have me on laxatives and stool softners but I do not get the power behind the push. I just expel some weak air when I can muster it up. I see the radiation oncologist today and we are supposed to address this area with radiation to help get the nerves/tumor reduced so that function will return. I am sure we will visit other alternatives soon if this does not help. I am still able to walk with my left leg, but it is weak. Overall, my spirit is good. I have not done radiation before so I know the hard could be coming. Pooping out of a radiated butt scares me! So many things to think about, make plans for, but I sometimes feel paralyzed over the enormity of it all! Then I look around at what I still enjoy and am thankful because it is not as bad yet as it can get. I am so glad I can come here and share. So many people do not understand the thoughts of a person on the edge of the cliff looking down. They tell me "Your gonna beat this thing once again!" Do I even want to?
I have had four good years even with chemo hell. I have gotten to see and do things that at my first diagnosis I did not think I would see. God has been faithful every step of the way. He will get me through this. Thank you MRC/Recurrent buddies for being willing to share your journey/thoughts/treatment plans with all of us. It helps beyond measure!
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.

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

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby kpjpmom » Wed Mar 18, 2015 7:44 am

I saw the radiation oncologist yesterday and we begin radiation today. I will have 3 weeks of radiation (15) treatments for pain relief. Might be more, might be less is how they quoted it to me. The tumor is pressing in on the nerves that control bladder and bowel function. I am to start (which I already had) taking laxatives and enemas to keep things moving down there. They have ramped up the pain meds for now and hope with more radiation they will be able to back off the pain meds which cause severe constipation for me. That is the update for today. First treatment of rad. I have ever had. New horizons, huh?
Mentally, I seem to be in an okay place. Maybe due to the pain. I know I need to get help and do not want to sit around in a drugged up phase of life. Missing being able to get out and drive. Cannot drive right now bc of meds. My grandbabies are coming for supper tonight, so that will be my joy for the day. Blessings to all of you sweet ones!
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.

Asterix
Posts: 333
Joined: Wed Sep 26, 2012 1:51 am
Location: Brisbane, Australia

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Asterix » Wed Mar 18, 2015 9:18 pm

kpjmom (and everyone else),
I had radiation for the first time last year for some spine mets, and a shoulder blade met. It seemed to help with the pain. Since I was hospitalised on death's door last October, I was on 100 mg Kapanol (Oral morphine) twice a day and have now reduced to 30 mg twice a day. I still don't feel confident to drive, but more due to leg weakness than the meds. I'm not sure if the radiation reduced the pain, as I had a spinal block procedure shortly after and have been on irinotecan since Nov which apparently is working (CEA dropped and liver function improved, I have LN, lung, liver and spinal mets). I have a scan tomorrow that will tell us more - hopefully good news. Overall I am still weak with good days and bad days. Still taking star photos since my family helped me finish my observatory so now we just need to open it up, turn the telescopes on and then control it remotely from the house.

I hope the radiation works for you to reduce your pain and you can reduce your pain meds. I wasn't too bad on 100mg twice a day but my wife says I much more with it now.
Stage IVb age 37 Nov11
FOLFOX+Avastin, Xeloda+Avastin
1 year NED
regorafenib Oct13-Feb14
lymph node, lung, spine, rib and liver mets
GNAQ Q209P mutation > Mekinist Jul14
Radiation bone mets Aug14
Pain>hospital Oct14
FOLFIRI Nov14 >
Home Xmas 14

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby skypup » Thu Mar 19, 2015 10:07 am

Asterix, it's SO good to hear from you! You made my day that you have stabilized and are back at home rigged for more stargazing. Please post photos!

Asterix
Posts: 333
Joined: Wed Sep 26, 2012 1:51 am
Location: Brisbane, Australia

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Asterix » Thu Mar 19, 2015 5:46 pm

Skypup,

You can see all my photos, including the recent ones, here: http://www.astrobin.com/users/Asterix2020/
Just click on any of the small photos to get a larger one. Click on that one to get an even larger photo.

I just got a canvas print made of the Grand Canyon with the Big Dipper - it looks great. Also got a sunset picture at La Push beach, WA done up from when we were there Jan 2014.
Stage IVb age 37 Nov11
FOLFOX+Avastin, Xeloda+Avastin
1 year NED
regorafenib Oct13-Feb14
lymph node, lung, spine, rib and liver mets
GNAQ Q209P mutation > Mekinist Jul14
Radiation bone mets Aug14
Pain>hospital Oct14
FOLFIRI Nov14 >
Home Xmas 14

User avatar
pollo65
Posts: 1564
Joined: Thu May 20, 2010 3:11 pm
Facebook Username: pollo2
Location: central valley, calif

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby pollo65 » Thu Mar 19, 2015 7:31 pm

Hey all, I am home from the ER after being diagnosed with DVT to left leg just two weeks after finding the ruptured discs (3) not exactly feeling wonderful. Found it it is easier to give others injections than myself . Kudos to all of you who have been doing diabetes meds all your life. Don't have much to say except ouch and I will get back to you when I am feeling a bit more positive. Thanks to everybody for being here
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

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby skypup » Fri Mar 20, 2015 10:39 am

Crikey, pollo, enough excitement already!

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Frenchie's Wife
Posts: 959
Joined: Sat May 04, 2013 1:01 pm
Location: Alberta, Canada

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Frenchie's Wife » Fri Mar 20, 2015 5:16 pm

I know that after all this time it's a little hard to tell but I'm still alive and kicking. I am going in for a bone scan on Monday morning. They now think that I have bone cancer in my rib cage. I have to walk around like a dog humping a football !
All these scans and X Rays have now become a concern regarding radiation cancer. I'm damnd if they do and damnd if they don't at this point. It's getting harder and harder for me to stay on the right side of the grass !!
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

User avatar
pollo65
Posts: 1564
Joined: Thu May 20, 2010 3:11 pm
Facebook Username: pollo2
Location: central valley, calif

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby pollo65 » Wed Mar 25, 2015 1:53 pm

I got my asap scan scheduled for tomorrow onc (if I read him right)_is checking to see if dvt is caused by the enlargement of my Peri aortic lymph node. I haven't decided if I will do chemo again if the growth is the problem. Like Frenchie there is also the too much radiation thing going on, scan was set for June. I need to ask if anyone has gotten financial help for the price of lovenox.... Even the generic is over 600 out of pocket month. I have a bit of savings but am burning through it rapidly.
Thanks for listening.
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

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby skypup » Wed Mar 25, 2015 10:13 pm

Sending up good thoughts for you, Pollo!

Rubyslipperz1
Posts: 45
Joined: Sun Jan 19, 2014 4:46 am
Location: Chicago Area

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Rubyslipperz1 » Thu Apr 02, 2015 10:03 pm

How do you cope with knowing you are dying? My kids have been gone the past couple days and I have been a wreck. It's like all the tears I have been trying to hold back came flooding out. It's all I can think about at night and I am so sad. I am sad I may never see my 40th birthday. I am scared I will never see my younger children graduate from high school. My heart just breaks thinking of all the things I am going to miss. It just aches. I try to hold on to hope or believe in miracles but my realist side just keeps reminding me to get my affairs in order and be prepared for the worst. How have you found peace in such heartache????
38 F mom DX 12/13
Stage IV CC w/ mets to liver,lung,& lymph nodes
10 rounds chemo
7/11-failed liver resect but removed tumors in colon and lymph nodes
10-11/14-SIRT
11/14-1/15-travel-Palooza
3/15- chemo folfiri and Avastin (every 2 weeks 4 life)
7/15-emergency back surgery
2016-Folfiri/Avastin e/o week took 2 month break and cancer thanked me by spreading to lungs, pancreatic lymph nodes and increased +30 tumors to liver


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