Im nervous

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Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Im nervous

Postby Trying » Wed Mar 13, 2019 7:01 pm

Scan in two weeks. Past two scans have been great. 8 tumots are gone. Any words of wisdom or comfort? Would the chemo usually still be effective if i started last june. I know you guys arent drs. Just looking for your experience to give me hope.
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

Detox
Posts: 61
Joined: Fri Apr 28, 2017 5:27 pm

Re: Im nervous

Postby Detox » Wed Mar 13, 2019 9:19 pm

Sorry you still have to go through this for almost a year now. I've seen/read about patients who have managed their disease for years with various chemo cocktails. HOWEVER, your ultimate goal is to obviously try to rid your body of the cancer entirely and surgery is almost always the best strategy for doing so. Any reason why the doctors are not being more aggressive with your peritoneal metastasis?

I've also seen patients on here who have done a simultaneous procedure of HIPEC for peri met and liver resection surgery for liver metastases. I apologize that I don't recall the exact post but I've definitely seen it posted here. You might want to try "searching" forum posts.

Koreysue
Posts: 258
Joined: Mon Apr 30, 2018 2:36 pm

Re: Im nervous

Postby Koreysue » Wed Mar 13, 2019 9:23 pm

I do not have any wisdom or advice, just wanted to say you are not alone. I have my cea check on Monday and am terrified. Almost can’t think of anything else.
Most likely you scan will be good, and my blood test good, but in the meantime we are stuck in worry.
Seems like the chemo has worked great for you.
Keep on keepin on,
Koreysue
Dx: 6/2017 stage 3 CC
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (last chemo (1/31/18)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/18 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/19 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5
CEA 5/21 4.2
CEA 10/21 3.4
colonoscopy 10/21 10mm polyp
CEA 4/22 3.7
CEA 7/22 3.8
CEA 12/22 4
CEA 1/22 3.2 and NED 5yr scan

Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Re: Im nervous

Postby Trying » Wed Mar 13, 2019 9:51 pm

Detox wrote:Sorry you still have to go through this for almost a year now. I've seen/read about patients who have managed their disease for years with various chemo cocktails. HOWEVER, your ultimate goal is to obviously try to rid your body of the cancer entirely and surgery is almost always the best strategy for doing so. Any reason why the doctors are not being more aggressive with your peritoneal metastasis?

I've also seen patients on here who have done a simultaneous procedure of HIPEC for peri met and liver resection surgery for liver metastases. I apologize that I don't recall the exact post but I've definitely seen it posted here. You might want to try "searching" forum posts.

They are waiting for my liver mets to be recectable at the same time. Im in canada so im not sure if processes are the same. Thank you for your reply.
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

crikklekay
Posts: 142
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: Im nervous

Postby crikklekay » Thu Mar 14, 2019 8:38 am

I know nothing of liver mets, but I do know everything about scanxiety. It doesn't always help, but try to stay busy with tasks that don't let your mind wander. Spending time with family and friends, talking with coworkers, working with my foster cats, just generally doing anything that can get me out of my own head. People here before have told me to hang on to previous good results. The last two scans were great, there is no reason the third can't be great as well! Consider this a metaphorical hug, we're thinking of you and praying for another great result. <3
Caring for DH John
Stage IIIC, Lymph nodes: 6/22
Chemo: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/MSSA infected port, PICC line inserted, chest CT scan showed septic emboli & blood clots
03/18 Hospital w/CDIFF
08/18 CT Scan Clear, NEMD
2018/2019/2021 Colonoscopy Clear
2019/2020/2021/2022 CT Scan Clear
2021 PET scan & MRI show one spot on liver
08/21 Liver surgery to remove spot, confirmed mCRC. Now Stage IV
09/21 Start Folfiri + Avastin
03/22 CEA Rise, continuing chemo

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Im nervous

Postby DarknessEmbraced » Tue Mar 19, 2019 10:38 am

I hope you get good scans!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Im nervous

Postby stu » Thu May 09, 2019 1:45 am

Hi Trying ,

How are you getting on ? I have been thinking about you .

Take care,

Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Re: Im nervous

Postby Trying » Sat May 11, 2019 8:42 am

Hi stu

I have ups and downs. I need a chemo break. I dont onow if these are common but my body is begging for a break. Hope you and your mom are well.
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Im nervous

Postby Pyro » Sat May 11, 2019 9:29 am

Trying wrote:Hi stu

I have ups and downs. I need a chemo break. I dont onow if these are common but my body is begging for a break. Hope you and your mom are well.


Just tell the doctor you need 1 cycle (or more) off, they’ll do it. It is a risk, he will tell you that, I’ve found if you feel life isn’t worth living on these drugs, you’ll probably stop taking them all together. So take a break, so you can continue in the future. I have also found with my nearly 4 years of dealing with this, things I’ll do and things I just will not, no matter what the doc says. I understand the risk, it gives me a sense of control.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!


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