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Current state: still fighting with rectum cancer, but chances for better quality of life

Posted by jpluimers on 2020/03/12

The below thread describes my current state; this is how the rest of the family is doing:

  • Eega is almost recovered from surgery of a set of huge and smaller cysts; her cancer seems not to have returned
  • Brother has his third big cold in 3 months time; hopefully it is not COVID-19; not much response from his caretakers. He is still very confused about the family situation and should get more care than the 6 hours a week he gets now (out of the entitled 15+) but requests for more care since 2017 have had no success
  • Mom’s Alzheimer’s is progressing fast: she thinks I’m her brother and insists I should take care of the burden of her problems

This is a follow-up on Far less active on blog on social media: some personal things that need to be done. about a year ago, where I did not know what year would be ahead.

From [WayBack] Thread by @jpluimers: Monday was the most Wiert day of my life. At 08:30 the @hetAVL rang, 3 hours before admittance. The request was if I wanted to come in early… (on Twitter: [Archive.is] Jeroen Pluimers on Twitter: “Monday was the most Wiert day of my life. At 08:30 the @hetAVL rang, 3 hours before admittance. The request was if I wanted to come in early and discuss possibility of postponing surgery. 1/… “)

Monday was the most Wiert day of my life. At 08:30 the @hetAVL rang, 3 hours before admittance.

The request was if I wanted to come in early and discuss possibility of postponing surgery.

1/

I’m quickly running out of time and energy to do a long update, so here is a short one:

Tuesday surgery, monday admittance, friday final surgery check, today final sigmoidoscopy.

Custody and mentorship of mom’s Alzheimer has been to court; should be OK.

Eega scans OK too.

1/ https://twitter.com/jpluimers/status/1224307488532713473 …

Today, I got up. Twice. As it’s probably the toughest day of my life yet. Tomorrow will be a very similar for my eega.

Her CT scan results will hopefully conclude what the spots on lungs and liver actually are.

1/ https://twitter.com/jpluimers/status/1217039945837301761…

Very early in the morning the team had discussed the sigmoidoscopy results, as it looked like the tumor kept shrinking, despite 13 weeks after radiation therapy.

There is only a small (~20%) percentage of patients for which this happens.

2/ 

When this happens, they then can take part of a “Wait & See” protocol.

The plan for me is to give it some 4-6 more weeks, then perform a new MRI plus sigmoidoscopy. If the tumor is gone or only scar tissue is visible, repeat MRI plus sigmoidoscopy every 3 months for 5 years.

3/ 

If the tumor grows, then opt for surgery.

In my case, besides the tumor, also one lymph node will be observed, as it initially was larger, but now has shrunk to normal proportions.

4/ 

This means a 180 degree turn in events. I am still a cancer patient. But for the foreseeable future, I won’t need a stoma. I might not need one for the rest of my life.

5/ 

Note that this a formal approach with about 400 patients in The Netherlands and results equalling or surpassing immediate surgery.

Some background information, most parts in Dutch:

6/ 

– Portuguese, as Angelita Habr-Gama in 1991 was the first to try this approach in Brazil, calling it “Watch and Wait” pt.wikipedia.org/wiki/Angelita_…

7/ 
– Angelita Habr-Gama “How to avoid surgery in rectal cancer” presentation

8/ 
– Internationally renowned surgeon Angelita Habr-Gama, MD, PhD, named 2014 ASTRO Honorary Member astro.org/News-and-Publi…

9/ 

– prof. Geerard Beets en patiënt Harrie Keusters: “Publiekslezing ‘Wait & See’ endeldarmkanker AVL 21 maart 2018”

@harriekeusters

10/ 

– 2013 patient Harrie Keusters linkt naar “Wait and See bij endeldarmkanker” kanker.nl/ervaringen-van…

11/ 

– NKI/AVl informatie over “Wait and See”


12/ 

– NKI/AVL informatie over Professor Geerard Beets


13/ 

– Professor Geerard Beets introducing himself in Dutch

14/ 

– Patient Harrie Keusters schreef boek “Nooduitgang” over deze benadering

15/15 

 

–jeroen

This entry was posted on 2020/03/12 at 12:00 and is filed under About, Personal. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

2 Responses to “Current state: still fighting with rectum cancer, but chances for better quality of life”

  1. pmu's avatar

    pmu said

    2020/05/08 at 06:25

    Wish you the best!!

    Reply

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