How long until you see light at the end of the tunnel?

Please feel free to read, share your thoughts, your stories and connect with others!
JudiB
Posts: 71
Joined: Sun Mar 05, 2017 5:30 am

How long until you see light at the end of the tunnel?

Postby JudiB » Wed Mar 22, 2017 2:21 am

I have had 2 Folfox treatments, the last has left me very "down". I can only look on the 10 further sessions with dread and the feeling that it is eating away at the​ person that is "me" .

Normally I am an enthusiastic, positive person but see this changing with the treatment. This second treatment has made me very emotional, tearful and the end feels impossibly distant . Nausea has lurked until into the second week.... My "good" week and I have felt more unwell overall​, even though no vomiting. All the side effects eat away at the morale and conspire to pull me down. What will next time be like .. ..

Did/do others feel like this and how long into treatment did you begin to see an end in view? I can only see months of misery ahead and dread that during this time, I will lose the person I was.

I see​ the oncologist today but know that I will struggle​ to tell him just how bad I am feeling.

Xxxx
May 2004 Breast cancer lumpectomy followed by radiotherapy, Tamoxifen 5 years, then Femara 2 years.

Jan 2017 resection around colo-rectal junction
T2bN1 M0
March 2017 Chemo Folfox started. Oxaliplatin for 4 treatments, then just 5 FU and Leucovorin for remaining 8 treatments.
June 2017 clear scan
Last chemo August 2017
August 2017 clear scan
February 2018 clear scan

teri3
Posts: 405
Joined: Fri Jan 09, 2015 11:03 am

Re: How long until you see light at the end of the tunnel?

Postby teri3 » Wed Mar 22, 2017 10:43 am

Please tell your oncologist how you're feeling maybe he can help. Have you thought about an depression med? Chemo is tough and it does drain you but you need to use whatever you can to try and remain upbeat. Please talk to your oncologist. I know you've got this!
HUGS
Teri
58 yrs old female
MSS KRAS mutation G12V
adenocarcinoma sigmoid colon dx 11-14
sigmoidectomy 11-14
Stage 3A
3 out of 20 lymph nodes involved
started FolFox 1-27-15
11 rounds FOLFOX last one 6-30-2015
7-29-2015 PET clear
5-14-2016 CT 2 nodules one in each lung
Confirmed pulmonary metastasis stage 4
FOLFIRi + Avistin started 8-16 11 rounds complete 12-16
CT 12-16 nodules shrunk chemo break wait and see :?
CT growth
VATS l lung 4 10 17
VATS r lung 4 24 17
CT 2 nodules r up and l low :(

karaj
Posts: 49
Joined: Mon Aug 18, 2014 10:17 pm
Location: Boston
Contact:

Re: How long until you see light at the end of the tunnel?

Postby karaj » Wed Mar 22, 2017 10:51 am

Hi JudiB,

I'm so sorry that you are feeling unlike yourself and down. Not recognizing yourself is a terrible feeling.

There are two things that aren't very extraordinary but that helped me feel better. One was acupuncture - I used it to combat the neuropathy and nausea but I cannot stress enough that those sessions absolutely refreshed me each and every time. These were the only periods where my mind and body relaxed simultaneously, allowing me to sleep deep while the acupuncture did its magic.

The other was finding a therapist at my cancer center. I didn't seek therapy until after my treatment had ended, because that is when I felt the most down, but wish that I had done so earlier. She offered me new insight and vocabulary to match what I was feeling. I think it was especially helpful to find someone who works exclusively with cancer patients.

Do be honest with your oncologist about how you're feeling and what the side effects are doing to you. He/She might have a solution, too.

All the best,
Kara
36 y/o female, dx at 32
8/14 dx Stage IIIC, 10/30 lymph nodes
8/14-9/14: sigmoidoscopy, fertility preservation, port-a-cath
9/14 - 3/15: FOLFOX (allergic to oxaliplatin, underwent desensitization)
4/15: NED
1/16: dx Stage IV, recurrence in three lymph nodes behind abdomen
2/16: FOLFIRI
8/16: NED
8/17: NED, currently under no treatment, scans every 3 months
http://www.karaincancerland.com

recruiter
Posts: 82
Joined: Thu Feb 11, 2016 12:01 pm
Facebook Username: Bill Wilson

Re: How long until you see light at the end of the tunnel?

Postby recruiter » Wed Mar 22, 2017 11:11 am

Absolutely I have felt that way.

I lost my Mom - my number one supporter - two months into this journey as well, and if it wasn't for friends - my blood family is a useless collection of greedy, self-absorbed narcissists - I don't know what I would have done.

Many is the time I have asked God to take me home to hold Mom's hand again. But He tells me my work isn't done here, so I press on in her memory.
DX Stage 4 2/16 with lung mets
4/16 CT, PET show "marked improvement" in size and number of lung mets, rectal tumor.
8/16 "Great report" from scans, lung mets continue to shrink in size and number, CEA 1.6, cancer "in remission" but surgeon believes tumor remains too large.
10/16 Xrays for constipation problems reveal tumor occupies 25 percent of rectal canal: Occupied 80 percent upon diagnosis 2/16
12/16 Back on Avastin; tumor can be removed, but need better margins.

Achilles Torn
Posts: 141
Joined: Fri Dec 16, 2016 2:41 pm

Re: How long until you see light at the end of the tunnel?

Postby Achilles Torn » Wed Mar 22, 2017 12:22 pm

I know everyone's experience is very different with Chemo. But I want to offer you a little hope....I am on my 6th treatment of FolFox (just disconnected my pump) and I found the first two treatments hit me the hardest. I have been doing pretty well since about the 4th treatment and am feeling better and better really. No idea if it will last for me but it seems sometimes your body can adapt to the drugs. I hope you have a similar experience with this nasty stuff.

Make sure to discuss your side effects with your doctors and nurses. Get the support you need and you can make it through.

Cheers
AT
Diagnosed as 40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX + Bevacizumab Commenced Jan 9/2017 PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks.
Progression after Covid19 induced break June 2020. Resume Maintenance chemo of Capecitabine and Bev

User avatar
mypinkheaven
Posts: 459
Joined: Fri May 20, 2016 4:29 pm
Facebook Username: Sally Cunningham
Contact:

Re: How long until you see light at the end of the tunnel?

Postby mypinkheaven » Wed Mar 22, 2017 1:14 pm

You're not the only one. Dread is the perfect description.

I had 4 Folfox treatments and while the side effects weren't horrible for me, I was terribly depressed. I found that Ativan helped. Unfortunately, Folfox didn't work for me and I'm now on Folfiri. This time around, I've found that taking the anti-nausea medications help. If I can eliminate even the hint of nausea, I feel better emotionally. It's still hard, but doable. I remind myself that I have meds that help and that brings down the anxiety about future infusions.

Be sure to tell your doc about how you feel.

Sally 8)
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

LMighty
Posts: 98
Joined: Sun Aug 28, 2016 6:16 am
Location: Hong Kong

Re: How long until you see light at the end of the tunnel?

Postby LMighty » Wed Mar 22, 2017 1:57 pm

Hi JudiB,

My mom was on Xelox so I imagine the side effects are similar. Like you she felt very emotional right after the 2nd session. The nausea and fatigue was physically and mentally crippling.

I strongly agree with Teri that you really should tell the oncologist how you feel. My mom was prescribed Zofran to relieve nausea and Stilnox for sleeping. Our onc also reasonably lowered the dosage of the remaining sessions to help cut down on the side effects a bit. Eventually I got my mom a PSK supplement (with our onc's agreement) which worked like a charm in terms of relieving side effects. She tolerated the remaining sessions better.

If you are prescribed meds, take them. Get all the support you can. Think of the all side effects as the evidence that the chemo is working. I know it's really tough but eventually you will make it through.
Supporter to my mom (64 yr); KRAS wild type; MSS

2012: DX Stage I, rectal cancer; resection and colostomy
5/16: DX Stage III, mets found; right groin lymph node and soft tissue
5-6/16: Radiation + Xeloda
7/16: DX Stage IV, pleural effusion; cancer cells found in fluid
7-12/16: Xelox + Avastin X 6
1/17: Clean PET scan, NED
2/17: Pleural effusion; recurrence
4/17: Iri + Erb X 3
5/17: Ascites; Chemo failed
6/17: Keytruda X 1
7/17: TECENTRIQ (atezolizumab) + COTELLIC (cobimetinib)
9/17: At peace

JudiB
Posts: 71
Joined: Sun Mar 05, 2017 5:30 am

Re: How long until you see light at the end of the tunnel?

Postby JudiB » Thu Mar 23, 2017 2:42 am

Thank you for your responses, it helps so much to know that I am not alone on this truly horrible journey. I am crying as I type ....
I saw the oncologist last night, he was fantastic, let me pour everything out, positively encouraged me to do it. I cried but managed to tell him how bad I'm feeling. He explained more about the treatment and why it is so rough...made me feel less of a wimp. He prescribed Zofran on top of the other anti nausea meds and will add another to the infusion if this doesn't work.
He also talked about reducing the oxaliplatin or knocking it out after 6 treatments if necessary. All this gave me hope that, maybe, things will get better.
We were with the oncologist for his last appointment​ and spent nearly an hour but it helped me so much​. He also asked if I'd like referral to a therapist in the hospital who does some sort of hypnosis with coloured lights... I'll try anything! I can also look at accupuncture so will​ explore this too.
I still feel low but today is my birthday and we are eating out with friends and going to our dance class​ tonight so....as long as I don't cry in the restaurant, it should be a good day! I can't believe how easily tears arrive at the moment and my poor eyes are sore !
Thank you all again and I send hugs and hope that your day holds some good things too.
Xxxx
May 2004 Breast cancer lumpectomy followed by radiotherapy, Tamoxifen 5 years, then Femara 2 years.

Jan 2017 resection around colo-rectal junction
T2bN1 M0
March 2017 Chemo Folfox started. Oxaliplatin for 4 treatments, then just 5 FU and Leucovorin for remaining 8 treatments.
June 2017 clear scan
Last chemo August 2017
August 2017 clear scan
February 2018 clear scan

Wonderfullymade
Posts: 140
Joined: Tue Jan 12, 2016 4:33 pm

Re: How long until you see light at the end of the tunnel?

Postby Wonderfullymade » Thu Mar 23, 2017 10:55 am

Judi,
Happy Birthday! I hope today will be the start of feeling better for you, and am glad to hear your Onc sounds supportive! I cried pretty much straight through the first couple of months! I was prescribed Ativan also but found it didn't do much for me. I now have a script for xanax and it is good for scaniexty. Point is if you do get something and you feel it isn't working ask for something different.
Also when I was on the folfuri I needed a shot before treatment to get me through the nausea, don't remember what it was though...
I will keep you in my prayers that the turn around is today!
Wonderfullymade
DX 3/2015 53
Stage IVa CC w/liver met
BRAF/KRAS wild type MSI-High (MLH1, PMS2) not Lynch
Folfox 3 cycles
5/2015 ER for subtotal colectomomy due to perforated colon, ovary removed
Folfuri/Pantiumumab 5 cycles
8/2015 liver resection, gallbladder removed and new LN
10/2015 CT scan new nodes
10/2015 Pembro started CEA 2.2
5/2017 stable lung things, coltis, lymph nodes stable cea 1/2017 1.1
9/2017 NED CEA 1.1 ( stopped Pembro)
2/2019 ER for DVT/ PE
2/2019 clean CT (NED) CEA 1.1

Soccermom2boys
Posts: 222
Joined: Tue Nov 10, 2015 10:29 pm

Re: How long until you see light at the end of the tunnel?

Postby Soccermom2boys » Thu Mar 23, 2017 5:28 pm

Hey Judi--
HAPPY BIRTHDAY!!! So glad to hear you had a nice, long appointment with your onc and are feeling better about dealing with it all. Everything you have said is 100% normal for what you are going through--welcome to the suck club, right?! :mrgreen: It is a one day at a time (hell, sometimes it's a one hour at a time!) situation going through chemo and living with a cancer diagnosis--we all collectively get it and understand and feel you. Great to hear a little hope in your voice, hope is a powerful emotion and what gets you through something like this, hang on to it! Find something fun to do on the non-chemo weeks. I always had two "dates" with a few girlfriends each "good" week and that helped for sure! Keep coming back to ColonTalk--we'll get you through when the going gets tough.
Happy Birthday!!! :D

P.S. Yes, the tears flow so easily for me as well--I am thinking I could be an Emmy-winning actress with how easily I can full on melt in to tears!
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

JJ2212
Posts: 268
Joined: Mon Oct 14, 2013 3:54 pm
Location: Montréal, QC

Re: How long until you see light at the end of the tunnel?

Postby JJ2212 » Fri Mar 24, 2017 7:59 am

Happy birthday Judi!

I agree with all of the advice and comments above. I'm also convinced that the chemo drugs screw around with our emotional state, regardless of how we felt prior to treatment. I went into my first Folfiri session full of optimism and "I've got this" attitude, and less than 4 hours later I was a depressed puddle of negativity. The chemo drugs are a potent cocktail, so be patient with yourself.

One thing that helped me through 3.5 years of treatment so far, over and above anti-depressants and therapy, is to plan something nice, a treat of sorts, for my off-chemo week. I get a massage or see a friend for lunch, something out of the daily routine that makes me happy.
Rectal cancer dx 04/13 @ 42, MSS, KRAS positive
T3N2M1 (1 lung met)
5 weeks xeloda+radiation finished 07/13
APR 9/13 (permanent colostomy), 27/31 nodes positive :-(
12 rounds of FOLFOX 04/14
Lung met growth 11/14
26 cycles Regorafenib (Stivarga) from 11/15 to 01/17
New lung met and chest/neck lymph nodes 01/17
1 cycle Folfiri

JudiB
Posts: 71
Joined: Sun Mar 05, 2017 5:30 am

Re: How long until you see light at the end of the tunnel?

Postby JudiB » Sun Mar 26, 2017 11:15 am

Thank you all so much for your support again. It helps so much along this horrible journey.
So . .. Here I am again on the eve of my 3rd folfox and 9nce again dreading it. Maybe the extra meds will help and my sister in law is over and coming with me tomorrow so things may feel​ different
I lost so many days to nausea and Feeling down last time...only really ended up with 3 ok days and a few part days this time. Feel my life dominated by this routine.
Had a good day today, but spoiled because tomorrow looms.....
Now it's out on here, maybe I can try to enjoy this evening without burdening those I'm with tonight ......just hate letting family see how bad I feel so trying the forum as a catharsis because you've been where I am.
Big hugs to those of you feeling the dread as well.
Xxx xxx
May 2004 Breast cancer lumpectomy followed by radiotherapy, Tamoxifen 5 years, then Femara 2 years.

Jan 2017 resection around colo-rectal junction
T2bN1 M0
March 2017 Chemo Folfox started. Oxaliplatin for 4 treatments, then just 5 FU and Leucovorin for remaining 8 treatments.
June 2017 clear scan
Last chemo August 2017
August 2017 clear scan
February 2018 clear scan

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: How long until you see light at the end of the tunnel?

Postby Lee » Sun Mar 26, 2017 6:07 pm

JudiB

So sorry the chemo is so rough on you. So very glad you told the Dr. Please keep your Onc informed of how the chemo is effecting you. Happy Belated Birthday.

One thing that really helped me during those 6 months of chemo. I had a fun day with a girl friend. The Friday of my week off chemo. We did what we wanted. Lunch, shopping, etc. It was one day I NEVER scheduled a Dr appt. One day I told myself I would NOT let cancer enter my mind. One day to be normal. Boy did it help carry me through the chemo treatments. Something to look forward to and one day to be normal.

Something else that helped me during chemo treatments itself, on the way to infusion, I always got a breakfast egg cheese sandwich (BurgerKing). For me, food in my stomach always kept nausea at bay. I also learned, eating small meals through out days was better than 3 meals a day. Don't worry about eating healthy while on chemo. Eat/drink what ever sounds/feels good. Don't worry if it junk food. Ginger has helped many people with nausea.

Remember to drinks lots of liquids a day or two prior to infusion.

All the best, hope it somehow get easier for you,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Beckster
Posts: 438
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: How long until you see light at the end of the tunnel?

Postby Beckster » Sun Mar 26, 2017 6:27 pm

Hi Judi

You are not alone! I am usually a very positive and people use me as their support system because of my positive attitude. However, when I was diagnosed right before Thanksgiving and starting chemo two days after Christmas, I went into a dark place. I did not want to see anyone...I did not leave my house...I cried every day... I started my chemo on Dec 27th and on my first infusion, I had a severe reaction and ended up in the hospital for observation. Mind you, I had stage 2A and chemo was an option. Even though I could not take Oxi, I started 5/FU in pill form, Xeloda. Pills for 14 days(2 weeks) and off one week. I cried during my first cycle and told my husband I can not do this for 6 months. I finally realized that this is temporary and I need to change my attitude and push through...

I am now starting my 5th cycle tomorrow. I never thought I would make it this far. Only 3 more cycles to go through. I see the light at the end of the tunnel. I use this forum to help me make it through each cycle. Everyone on this forum understands because they know how we feel.

Start counting down... only 10 more, than 9 more, than 8 more...... Put a big countdown number on a board to help you. Feel free to contact me to vent or discuss... WE CAN DO THIS!!!!
57/F
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic
1/2/17 to 6/9/17- Xeloda
6/17,12/17,6/18,12/18,6/19,12/19,12/20,12/21 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6 12/19 2.8 6/20 3.0 12/20 2.7 6/21 2.9,[color=#000000]12/21 2.7[/color]
Clear Colonoscopy 10/17, 11/19,11/21 :D

User avatar
LeonW
Posts: 358
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: How long until you see light at the end of the tunnel?

Postby LeonW » Sun Mar 26, 2017 6:35 pm

Beckster wrote: . . 3 more cycles to go through!

or, even better, only 2 more to go after tomorrow . . . You're almost there . . .
L
Dec 2012 - CC 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Jul - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Aug - 2x PV embolization (both failed)
Sep 2013 - R liver resect, 25d hosp (liver failure/delirium, lung emboli, encephalopathy), no living cancer (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town/life
2018, scopy: 2 polyps
2018/20 low (1.0-1.4) CEAs/clean CTs: 4x2014, 6x2015-17, 3x2018-20
next June 2021!


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 20 guests