UPDATED Back On chemo - Every ache and pain becoming related to Cancer

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BritinCanada
Posts: 8
Joined: Tue May 28, 2019 2:28 pm

UPDATED Back On chemo - Every ache and pain becoming related to Cancer

Postby BritinCanada » Tue May 28, 2019 3:15 pm

Before diagnosis I was pretty relaxed about any aches or pains or illnesses. I can't even remember the last time I went to the doctor for being sick. Of course that all changed when I got diagnosed and now I feel like everything is a symptom. Every upset tummy or achy back or even early night becomes this huge worry and its exhausting. I've stopped mentioning things to my family because they always freak out and demand I go to hospital or email my oncologist. And I get they're worried but it's overwhelming.

I think it's worse right now as we are taking a wait and see approach until my next scan. So everything has the potential to be something. Or not. I was feeling so much better when I was on chemo and felt like I was doing something proactive.
Last edited by BritinCanada on Fri Jun 07, 2019 7:43 pm, edited 1 time in total.
Dx CRC July 2018 T4N2M1
Sucessfull surgery August 2018
12 rounds of Folfox. June 2019 begin folfiri

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CRguy
Posts: 10020
Joined: Sun Feb 10, 2008 6:00 pm

Re: Every ache and pain becoming related to Cancer

Postby CRguy » Tue May 28, 2019 10:38 pm

Hey Brit
welcome aboard and I ASSume you are a colorectal Canuck by your username ? :mrgreen:

If you are out of active treatment and monitoring, there IS a sense of being set adrift and on your own, and it is scary.
BUTT .... You are NOT on your own !

Talking things out IS a good step and we are always HERE for you ...BUTT :shock:
sometimes it is good to talk to counsellors skilled in dealing with patients having issues.

Your choice.

EVERY ache and pain is NOT ... IME ... a recurrence. I know.
I am an old fart with a shitload of aches and pains, none of which are recurrences, and still a 12+ year Stage IVa CRC survivor.

BUTT if EVERY ache and pain is causing YOU concern = deal with it homie.

waiting for scan results = "scanxiety" which we all know a lot about on this forum.
BUTT
BUTT
what is on the scan or not WILL NOT CHANGE between now and the scan results

what is ?
what IF ?

Live with what IS

Cheers and Harmony in the Journey
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

BritinCanada
Posts: 8
Joined: Tue May 28, 2019 2:28 pm

Re: UPDATED Back On chemo - Every ache and pain becoming related to Cancer

Postby BritinCanada » Fri Jun 07, 2019 8:01 pm

Well CRguy I took your advice and asked to have a chat with my nurse practitioner. At first she wasn't too concerned as most of my issues were anemia related. But then she decided to do a physical, part of which was an MRI and she found enough fluid in my abdomen to be concerned.

Went back the next day and had it drained so they could send the results off. Within an hour of leaving she called to say my oncologist doesn't even want to wait to see the results. They are putting me back on chemo next week. Referring me for HIPEC and blowing up the phones trying to get me in for my ct scan next week and making an appointment with my surgeon the following week.

Quite terrified by the speed this happened, although I know that doesn't mean too much. I had made it clear to them today that if there was anything suspicious I wanted to be super aggressive. I guess they are taking me at my word. Not going to lie I really don't want to go though this all over again and would just rather not do it but I figure I'm allowed one day to be sad and tomorrow I will pull myself together and get on with it.

I'm glad I listened to my body and realised something was off. And while most of my aches and pains were the anemia and have already eased it did mean I got a bit of a head start on this recurrence.
Dx CRC July 2018 T4N2M1
Sucessfull surgery August 2018
12 rounds of Folfox. June 2019 begin folfiri

User avatar
CRguy
Posts: 10020
Joined: Sun Feb 10, 2008 6:00 pm

Re: UPDATED Back On chemo - Every ache and pain becoming related to Cancer

Postby CRguy » Sat Jun 08, 2019 12:39 pm

I firmly believe :
" We will miss more for not looking ... than not knowing. "

You had the right instinct and kept pushing until they LOOKED !
Now you know what IS, and you have a plan to deal with it !!!

Glad they are pressing ahead ASAP for you.
Keep us in the loop
we are ALWAYS here for you

Harmony
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

BritinCanada
Posts: 8
Joined: Tue May 28, 2019 2:28 pm

Re: UPDATED Back On chemo - Every ache and pain becoming related to Cancer

Postby BritinCanada » Sat Jun 15, 2019 3:48 pm

Got my pathology on the fluid back and as expected confirmed the cancer. I won't know the ct results until Monday but I spoke to my NP and we came up with a plan for chemo. I will start Tuesday. I am feeling so much better since talking to her. I hate having to wait in those little rooms for the doctor to deliver the results and now we have a plan I feel less... hopeless I think. I should stop googling stuff though.

And I forgot to answer before but yes I'm in Canada. Originally from England and relocated about 15years ago. I'm at Sunnybrook in Toronto and so far they have been great.
Dx CRC July 2018 T4N2M1
Sucessfull surgery August 2018
12 rounds of Folfox. June 2019 begin folfiri

Dionca
Posts: 39
Joined: Sat Dec 02, 2017 2:04 am

Re: UPDATED Back On chemo - Every ache and pain becoming related to Cancer

Postby Dionca » Sun Jun 16, 2019 2:06 pm

I'm very sorry that you have to go through this again, but glad you didn't ignore what your body was telling you. I like how they moved so fast, without even waiting for results, so you know you are in good hands.

I hear very good things about Sunnybrook, so at least you are in the right place and they will fix you up with whatever needs to be done.

Wishing you all the best. Please let us know how you make out.
May 2015 right hemi CC cecum
removed terminal ileum, illeocecal valve, appendix, cecum, ascending colon, omentum
stage 3b T3 N1b MX 2/27 nodes (isolated tumour cells in 1 add'l node)
moderately differentiated
PNI - positive
LVI - positive
Folfox 12 sessions (without oxi for 11 & 12)
Neulasta with 3-12 due to low WBC count
CEA at diagnosis 8.6
CEA after surgery 1.2
CEA during chemo 4.6 / 3.3 / 2.3
CEA after chemo 1.5 / 1.2 / 1.2 /1.2 /1.2 / 1.4 / 1.1 / 1.2 / 1.9 / 1.3 / 1.6 /1.4 /1.5
neuropathy


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