CT scan

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saltygirl
Posts: 164
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

CT scan

Postby saltygirl » Sun Apr 09, 2023 5:01 pm

Hello,
I have a scheduled CT scan for May. I am NED since March 2021 - my last chemo treatment. I am planning (already booked) full summer of international travel. My son is graduating high school. Taking a long trip with him. And also will see my girl on her international tour for her college sport team. She will play in 4 different countries. I am also going to Dubai see friends etc. So here is my question. I am convinced that I would not start any treatment anyway until I get back from my travel. I want to experience my summer with my kids no matter what. In my situation if I have reoccurrence. Most likely cure is not possible. I am thinking pushing my CT scan until I get back. That will be beginning of August. After I move my son out of state to a college. He will also be a college athlete. Will not be able to come home once he starts college. Same for my daughter. As a college athlete she comes home once a year. I am so happy that both will live their college lives. And honestly I am not even sure if I would chose to do more treatment even if available.
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: CT scan

Postby rp1954 » Mon Apr 10, 2023 2:30 am

saltygirl wrote:...I am planning (already booked) full summer of international travel. ... I want to experience my summer with my kids no matter what. ...

In case of a recur, I would decide what chemistry to take with me, I would not do nothing even if it's without chemo.
One of the great misconceptions is that you have to suffer to do chemo or some kind of useful chemistry.
e.g. we found that my wife needed a certain level of constant chemo activity to stop her para lymph nodes from distinct, individual growth spurts, that would "pop" an individual LN from ca 2-7 mm LN to 20-22 mm LN in under two weeks, vs what might stop or kill the larger ones.

I'll admit that doing IVC every 4-5 days is a nuisance to help eliminate chemo side effects at home. We've managed to stretch that to one IV C in the middle on 4-6 weeks travel (IIRC) with UFT-LV but the UFT, Xeloda or 5FU side effects will emerge if you don't do IV vitamin C frequently enough.
My wife could do her heaviest chemo treatment at a stop light and IV vitamin C on the beach.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

saltygirl
Posts: 164
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: CT scan

Postby saltygirl » Tue Apr 11, 2023 12:39 pm

Thank you so much. Great idea. Congratulations on your wife! NED for 5 years!!!
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023

saltygirl
Posts: 164
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: CT scan

Postby saltygirl » Wed May 03, 2023 11:46 am

Is your wife still NED? That’s truly amazing. I pushed my CT to Sep. We will see…
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: CT scan

Postby rp1954 » Wed May 03, 2023 2:54 pm

Yes, she phased out chemo almost 5 years ago and hasn’t had any more CEA flares. CEA was always very sensitive for her. So hopefully her chemo outlasted all her micromets. She phased down on IV vitamin C 1.6 years ago. She is erratic on diet and supplements so diabetes, comorbidities, Covid and osteoporosis are threats.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

saltygirl
Posts: 164
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: CT scan

Postby saltygirl » Wed May 03, 2023 5:39 pm

That’s truly amazing. What is her oncologist she/he thinks? Most would put her in no chance for a cure. You both outsmarted many doctors.
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023

saltygirl
Posts: 164
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: CT scan

Postby saltygirl » Fri May 05, 2023 12:00 pm

Thank you. I am really in peace with my decision. Have scheduled my CT for Sep after my trip to Las Vegas :P Meanwhile I work out daily and drink wine daily…
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: CT scan

Postby claudine » Fri May 05, 2023 2:49 pm

Meanwhile I work out daily and drink wine daily…


Haha cheers to that! I know my husband would 100% agree with your decision. We made travel plans for the summer, leaving the US on June 28, even though he's got a control MRI on the 20th. He had one last week that showed no progression and his cancer markers are still dropping (at their lowest since June 2020), but his back is still a mess. The only thing that would make him cancel the trip is if the June 20th MRI showed a severe risk of irreversible paralysis while we are abroad. His cancer his slow growing; I remember his onc saying that one or two months before starting treatment wouldn't make a difference (unless of course his back is about to collapse and something needs to be done ASAP).
Enjoy your summer :D :D :D
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

saltygirl
Posts: 164
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: CT scan

Postby saltygirl » Sun May 07, 2023 1:13 pm

Best luck to your husband. Enjoy your travels! I am leaving June 20.
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023

saltygirl
Posts: 164
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: CT scan

Postby saltygirl » Thu May 11, 2023 1:00 pm

Wherever you travel to, appreciate the culture and beauty of the place.” My list of cities & places I will visit this summer:
Prague, Athens, Dubrovnik, Split, Montenegro, Greek Islands, Venice, Dubai & Abu Dhabi, South of France.
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023


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