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Soldiering on.....

Inishbofin
Posts: 11
Joined: Jul 2017

Hi all,

 

I am a bit of a lurker.  I was diagnosed with Stage 4 colon cancer last year, and posted on this board, which was immensely welcoming and supportive.  This Is an amazing resource for folks thrust into the scary world of cancer.   My question to folks who have been dealing with this for a while:   Do you ever get tired of the Treatment routine?   I just feel a tad bit weary of it all.  I will be going for cycle 26 tomorrow, of folfox and avastin.  I've started to react to oxaliplatin, so we may need to switch up drugs soon. I am also getting scan results tomorrow, and there is some concern that the cancer may have spread further.  After a year in, I am just a bit weary of it all.

 I try to remain very positive overall-These feelings only surface right around treatment time.  I'm still pushing the oncologist for a liver resection, despite the fact that I have not been a candidate to date.  We've talked about the possibility of an ablation, as well as a chemo break. I'm trying to follow a plant based diet, and I am exercising more.  I'm attempting to do everything I can, with some lapses ( I couldn't help eating that piece of cake yesterday!) I think I was really hoping for a chemo holiday more than I realized.  Things were relatively stable until last scan.  Saw some concerning changes, and all talk of ablation/chemo break went out the window.  New plan consisted of 4 more cycles, then another scan.  Had the scan yesterday, and get the results tomorrow.  Will see what tomorrow brings, and I will soldier on.

I've started to dread chemo, which is a relatively new feeling for me.  I get nauseous just thinking about it.  I HATE my chemo pump.   My oncologist suggested I should love my pump, as it is keeping me alive.  Yeah-not so much.   My kids are relatively young, and last thing I'll do is throw the towel in- I've got a great husband and two awesome daughters (9,11), but it would be really nice to have a break! 

I find myself jealous of folks/celebrities who talk about how they had to endure several cycles of grueling treatment, but they're done, or in remission.   My reaction is WTF!  Try 26 cycles, or 40-something cycles.   On one hand, I am very happy that they're in remission, because it provides hope for the rest of us, but it makes me upset knowing that there are many out there struggling with worse, and might never get a break, or go into remission.  My oncologist told me she has a patient who has had 40+ cycles of folfox.  That's downright inspirational, but it's hard to imagine what life is like at 40+ cycles!

 

Ok, I'm done venting.   I need to get laundry done, so husband and kids don't run out of clean clothes while I am out of commission!

Thanks for reading.  I'm wondering if other people have ever felt this way, and how far along in treatment were you?  

 

 

 

 

abita's picture
abita
Posts: 833
Joined: Dec 2017

I get my scan next week to see if my treatment worked. Even if it did, I fear a recurrnence as I was diagnosed at stage 4. I am not sure if this will give you hope, but it is what I focus on. There is so much research being done. This study is going to human trials soon. Maybe it will succeed and you can be a canddate for it. https://med.stanford.edu/news/all-news/2018/01/cancer-vaccine-eliminates-tumors-in-mice.html  If not, maybe there will be something else. I am sorry you are in this phase. I too hated my pump, btw.

Inishbofin
Posts: 11
Joined: Jul 2017

Abita-

Thanks so much for the encouragement and the link to that interesting study. Theyre recruiting lymphoma patients right now, for a phase 1 trial, and hopefully it will be successful, and they open the doors to patients with other types of cancer.  Good luck with your scan next week!

Woodytele
Posts: 163
Joined: Apr 2017

Your thoughts mirror my own.  I get sick just thinking of infusion, the Dr. visit, everything.  It definitely wears on you.  I have a Dr. visit this week, and get quite nervous about it.  You never know what they are going to say, or how the blood test will go.

I’m the same stage as you, 45 years old with three young kids.  It sucks. 

i think your feelings are normal. 

Inishbofin
Posts: 11
Joined: Jul 2017

Hey Woodytele-

 

I feel sort of guilty for feeling this way, which is ridiculouS.  It helps to know that others feel the same way.  it does stink for sure.  Especially when trying to raise a family. If there is anything good to be gotten out of this, We've grown closer as a family since this started. I have more patience and time to spend with the kids when I'm feeling well.  Even when I feel crappy, they'll try to make me feel better, and they're great at making me laugh or getting me so mad that I completely forget I even have cancer sometimes.  

Good luck with your doctor visit-ill be sending good thoughts you're way!  

 

danker
Posts: 1256
Joined: Apr 2012

Just plug along-a day at a time and perhaps one day you will be telling people  how you are NED,a cancer survivor!!It could happen you know.  Best of luck to you.

Inishbofin
Posts: 11
Joined: Jul 2017

Danker,

 

thank you you so much for the kind words and encouragement!  

Tunadog's picture
Tunadog
Posts: 235
Joined: Mar 2017

Cool Went to see my Cardiologist - no problems there 

Inishbofin
Posts: 11
Joined: Jul 2017

congrats on the good cardiology appt!   I just started seeing a cardiologist, and he's still trying to fine tune my meds.  Hoping he gets it right soon.

karyns_dad's picture
karyns_dad
Posts: 24
Joined: Oct 2015

I was diagnosed in 2015 with stage 3c rectal cancer.  Did 12 full folfox treatments.  Recurrence in liver in January 2017.  Did folfiri and Avastin for 9 cycles and was NED for a year.  At time of recurrence my oncologist who I trust said it was unresectable both times.  In Junen I had my latest recurrence and went to Cleveland Clinic for a second opinion.  I was amazed, looking at my scans, my surgeon said both recurrences a resection would be easy.  So much depends on the area you live.  I look at this board everyday since September 2015, great encouraging people here.  My faith and pray life has gotten better due to some of you.  I am on chemo for 24th since 2015.  And like you I hate everything about it.  After cycle 25 I will have scans and schedule resection 1 month later.

 

Long story but get a second opinion.  I drive 5 hours from Indianapolis to Cleveland.  Its rough but I believe it is worth it.  Keep hope always.

 

Jeff

Inishbofin
Posts: 11
Joined: Jul 2017

Hi Jeff-

You've certainly been through a lot!  I have been contemplating getting a second opinion.  However, I've been going to Dana Farber in Boston, which is pretty darn good.  I vetted my oncologist and surgeon with  a number of people at Mass General and Brigham and Women's, and they came highly recommended-especially the surgeon, whom I absolutely loved.   He did my colectomy, and shared his research and spent extra time with me, reviewing my scans when I was so overwhelmed with my diagnosis that nothing was sinking in.

  I do feel a bit guilty about looking elsewhere, although I know I need to get over that.  I've thought about Sloan Kettering and MD Anderson, and may go there for an opinion. I was reading about some sort of implanted device that Sloan Kettering offers and DFCI doesn't do yet (my takeaway was that DFCI was waiting for more clinical evidence from clinical trials) that  provides chemo directly to the liver, I think.  That looked really interesting.  

 

Good luck with your scan and resection!

karyns_dad's picture
karyns_dad
Posts: 24
Joined: Oct 2015

Sloan Kettering is a job option.  I was going there next but was satisfied with Cleveland Clinic.  The HAI pump is what I think your describing.  Others besides Sloan Kettering are installing these more frequent now.  Cleveland announced they started in 2017.

 

Good luck with all on your horizon.  Your story resonated with me and got me posting for first time in awhile.

myAZmountain's picture
myAZmountain
Posts: 346
Joined: Apr 2018

Have not had nearly a many cycles as you but genuinely hate the whole chemo routine and feeling like my insides were scrubbe with a brillo pad.  My BP skyrockets the minute I hit the infuaion chair. We just gotta do this I guess!

Inishbofin
Posts: 11
Joined: Jul 2017

same  happens to me.   My BP goes crazy, and there's always some drama over whether my BP will drop enough to get the avastin.  Ive been lucky-it always does!   You,re right-we just have to get it done!

sflgirl
Posts: 220
Joined: Jan 2015

If you’ve been then just visualize how special that was when you go for chemo. Imagine the beauty and simplicity. Breathe deep.

 I too got sick before chemo, they told me it was “anticipatory nausea“. It was not fun.  They gave me Ativan, you might ask about it.  And eat the darn cake, you deserve it!

I’m stage 4 w/ liver mets, one resection and chemo, Ned for two years, then recurrence and second resection.

Not knowing where you are located, have you gotten a second opinion on being a candidate for resection/ ablation?

Can someone help you with the laundry?  You can’t be superhuman everyday on chemo.

Wishing you the best.

 

Inishbofin
Posts: 11
Joined: Jul 2017

Hi sflgirl,

I'm from the Boston area, and go to Dana Farber for treatment.  If I hear chemo is my only option for the foreseeable future, I will have to get another opinion. I'm not sure how many more cycles I can tolerate without getting really really ornery.   This week I could barely feel my feet, because of neuropathY.  Once winter rolls around it's going to be a challenge.  I'll be going to bed with my uggs on!  I'll probably be wearing them year round.

anyhow, I definitely have anticipatory nauseA, especially after throwing up the last two cycles.  I hate being knocked out on drugs, but Ativan is definitely more appealing to me these days.  I'm going to ask for it tomorrow-thanks for the suggestion.  I don't want a repeat performance of the last two cycles, where my BP went thru the roof, I got sick and they had to stop the infusion.  That was Not pleasant.

 

Yeah, I've tried visualization, with limited success.  I love Inishbofin-it's definitely a magical place for my siblings and I.  I'm going to have to print some pictures from there and bring them with me to chemo!  My dad was from there, and I love going over to visit.  my plan is to try to get over there next summer with my husband and kids, for a short holiday, as they have never been there. That will be something good to look forward to.

 

Thanks!

Annabelle41415's picture
Annabelle41415
Posts: 6554
Joined: Feb 2009

It's good to vent and feel free to vent away here.  I'm here to help people year after year because even though I'm not able to help with their situations, I'm able to let them know this board is always in my prayers and always want every person to know that I'm here for support and to give whatever help from what I've been through.  Sounds like you have been through a lot so I'm just wishing you the best and all the support I'm able.

Kim

Inishbofin
Posts: 11
Joined: Jul 2017

Thanks For your kind words and prayers Kim!  It definitely helps to vent and let off a little steam.   

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

I was diagnosed with stage 4  rectal cancer with mets to the liver in  May 2015, had  8  Folfox plus Avastin treatments followed by  28 radiation treatments with a 5FU pump 24/5 before  beginning   a new  chemo cocktail of Irinotecan and Erbitux in April 2016. Had a liver ablation in August 2016, developed a fibrin shield around my port and had to have it removed and replaced.  New port was implanted in Nov. 2016, resulting in a collapsed lung which meant an extra day or two in the hospital with a chest tube. Had abdominoperineal surgery with a permanent  colostomy in Oct 2017.  Scans were good until  the last one, in July, that showed the beast is back, with  possible spread to  lungs and inguinal lymph nodes.  Finished up  the 54th  Irinotecan/Erbitux treatment on July 13 and am now back on Folfox and Avastin as of last week.That last treatment was worse than I remember the first 8 being, but it could be the culmulative effects  building up.  I'm not looking foward to going in next week for another infusion, but  the best I can do is take it one day, one treatment,one procedure, one scan at a time and hang in there as best I can,which is what most of us seem to be doing. I've found that I can take more than I thought I could to keep the beast at bay and myself functioning as normally as possible.  Hang in there and play whatever mind tricks you need to  in order to get  through and be able to spend  more time with your family. I hate that so many younger people with   children are joining us, but am hopeful that one day reseachers will find a way not to  just keep the monster down, but eradicate it forever and prevent it from messing up  any more lives.

Grace/lizard44

Trubrit's picture
Trubrit
Posts: 5226
Joined: Jan 2013

I am exhaused reading your post, and you're no young pup, to be going through so much.

You are magic, and I have such admiration for you.  If I could just reach out and hug you. 

Tru

asalesky
Posts: 1
Joined: Aug 2018

May I ask where are you receiving treatment and who performed the APR surgerY?

 

Thank you! 

Trubrit's picture
Trubrit
Posts: 5226
Joined: Jan 2013

I have no idea where my original post went, so annoying 

I am heartsick to read your post. You have every right to be venting, and this is the place to do it. We all understand, and even if some of us are lucky enough to have only dealt with one run in with chemo, we can and do imagine how hard it would be to be on it for life. 

Don't be too strict with your diet. Be sure to enjoy those treats. I had a good friend who followed a restrictive diet, and when her time came to depart, she siad how she wished she had enjoyed just a little cake and a little ice cream, and her favourite drinks. 

Tru

annie4145
Posts: 182
Joined: Jul 2018

Inishbofin:

Hi, I have two sons, ages 10 and 12.  They are almost the same ages as your girls (both just turned one year older in May).  Keep on the stuggle.....My heart is with you. 

Barbara

Kazenmax's picture
Kazenmax
Posts: 424
Joined: Feb 2016

I am feeling the same way. I hate the pump. I dread the infusion. The first 3 days are not bad but then they take the pump off and I drop. Nausea and such ridiculous fatigue. I keep trying to put one foot in front of the other but some days are way harder than others.

Hang in there. I'm walking the same path, partner. Let's get this done.

plsletitrain
Posts: 253
Joined: Jul 2017

It also gets to me, that feeling of low whenever I'm on infusion.  I think all of us have been through that, its not easy being on chemo.  My main problem is the mental effect of chemo, I feel like wanting to cry on the infusion center but I have no choice but to keep on living like nothing's happening.

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