Scary times . . .

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mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Scary times . . .

Postby mpbser » Sun Mar 22, 2020 1:19 pm

jep, sending you positive vibes

I pray for all of us
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

Siti
Posts: 150
Joined: Thu Aug 01, 2019 10:58 am

Re: Scary times . . .

Postby Siti » Sun Mar 22, 2020 1:20 pm

I agree with you roadrunner. Well articulated!

Perhaps I wasn’t clear with what I meant by social distancing won’t work — I believe that the ONLY way to controlling the virus or flattening the curve is to have an enforced stay at home lockdown. If only we have a society that is as disciplined as the army, then perhaps social distancing could work.

Through my observation, no one really follows the social distancing rules. We live next to a park and at every entrance to the park there’s a massive signboard that says “please keep a 1.5m distance from each other”. Guess what? No one followed that rule and are still chatting and exercising in groups.
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

roadrunner
Posts: 19
Joined: Sun Jan 12, 2020 8:46 pm

Re: Scary times . . .

Postby roadrunner » Sun Mar 22, 2020 2:08 pm

Siti: I agree with you 100% that people aren’t doing enough. I was just trying to argue that every little bit helps. I live in a region of the US where spread is still low (though it is increasing). It is abundantly clear that the US needs immediate lockdowns on “hotspots” and domestic travel to buy time. Within the hotspots, and places at risk of becoming hotspots, risk reduction measures must be made mandatory and stringent. And it doesn’t just need military discipline, but deployment of military assets to enforce restrictions. This needs to be done now, and is inevitable anyway. As massive chunks of our economy disappear indefinitely, many people will soon be unable to afford housing (rent) and buy food. What happens then? Not voluntary social distancing, that's for sure. Tough, comprehensive measures now will save exponentially worse outcomes later.
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.

stu
Posts: 1345
Joined: Sat Aug 17, 2013 5:46 pm

Re: Scary times . . .

Postby stu » Sun Mar 22, 2020 2:23 pm

The UK has brought in legislation that prevents renters being evicted during this period , mortgage breaks and 80% of salaries paid in employee posts if the are made redundant . The government will foot the bill .
Homeless are being put up in empty hotels . Private health care is now working with the NHS .
Today it was announced that the government will identify extremely vulnerable groups so the military will bring them food and local pharmacies will deliver their medication to the door .
This is changing by the day . Chemotherapy and surgery for cancer patients have been disrupted but hoping the extra staff will help . A new priority list has emerged for treatment .Not comfortable with it at all .
Take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Lee
Posts: 6034
Joined: Sun Apr 16, 2006 4:09 pm

Re: Scary times . . .

Postby Lee » Sun Mar 22, 2020 7:41 pm

stu wrote:The UK has brought in legislation that prevents renters being evicted during this period , mortgage breaks and 80% of salaries paid in employee posts if the are made redundant . The government will foot the bill .
Homeless are being put up in empty hotels .
Stu


Pretty much the same here in USA. April 15 was suppose to be tax day. That has been pushed back to July 15 with no interest or being penalized. We too are looking at empty hotels to serve the homeless or to be used as a possible hospital for those sick with the virus. Bills are being past to help families feed themselves. Restaurants are now drive through, no siting. Or delivery.

2 Navy ships are being sent out, one for the east coast and the other to the west coast. These are medical ships that can hold 1000's of people. They are floating hospitals with about a dozen surgery rooms on each boat, They will service the non virus people.

Now I just got to get out there and donate blood. WILL do this week. Those of you that can, please help. Someone's life may depend on it. I was told, if you are cancer free for 10 yrs, you can donate blood.

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 - 10 years and counting!

jsbsf
Posts: 45
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Scary times . . .

Postby jsbsf » Mon Mar 23, 2020 12:45 am

One argument I heard about wearing the mask is not so much that it would prevent the virus from being breathed in as much as it would provide a barrier for when we might instinctively touch our face. It did sound logical.
DH 61
2019
8/23 C-scopy, 5+cm mass. CEA:4.1
8/26 CT ~1cm lvr met?
9/6 PET: liver spot
9/16 MSS. MRI: 2 liver mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm (raised concern), pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
Chemo break
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12

Siti
Posts: 150
Joined: Thu Aug 01, 2019 10:58 am

Re: Scary times . . .

Postby Siti » Mon Mar 23, 2020 4:48 am

I promise, this is going to be my last post on the mask as I don’t want to offend anyone. Reason I’m so passionate about this topic is I feel that transparency is important, especially in time of crisis. We need to build trust.

Face masks are so stigmatised across Europe (and the US) that people are being judged for wearing it in public. My husband and I were told by a NURSE that masks “don’t work” and have an “increased risk of infection” while in the hospital as my husband receives his Avastin infusion last week. My husband was so embarrassed that he took his mask out to avoid being judged.
It was the same nurse that subsequently after lecturing us, put his hands on his face multiple times. I saw in the news here that a supermarket cashier was fired because he was wearing a face mask. I think he is as vulnerable as those working in the front line by serving hundreds of customers a day!

I genuinely think people are good — look at everyone here in this forum! We’re here to help, I am pleased to hear that people like Lee and Stu for example are donating blood and their face masks. And for me personally, I can’t physically volunteer because of my husband but I have donated money to WHO. If the government were to say, hey citizens, we need your help to ensure we don’t have shortage, so please stop hoarding masks. Or put a limit to 1 item per person like what they’re doing with hand sanitisers and toilet paper. But please, stop lying to people!

Now I’m not advocating for everyone to wear masks and put further burden to people working in the front line, but I do advocate for people with compromised immune system and the elderly to wear them at all times if they need to go out for a grocery run or hospital visits whilst the outbreak is rampant and out of control.

Articles here on why people have been told they don’t work but they actually do:

https://www.nytimes.com/2020/03/17/opin ... masks.html

https://www.theguardian.com/world/2020/ ... ths-busted

Anyway I rest my case and those of you here who still want to judge people for wearing masks without knowing that perhaps they have compromised immune system or perhaps are a caregiver to a high risk individual, I feel sorry for you.
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

stu
Posts: 1345
Joined: Sat Aug 17, 2013 5:46 pm

Re: Scary times . . .

Postby stu » Fri Mar 27, 2020 3:01 am

Thinking of you all . The numbers in the USA are frightening on paper but logically I guess when you analyse it by state it’s more like us .
The speed of change is awful . We are looking to set up Cancer Hubs but the pressure on cancer patients has been hideous. No support or guidance coming through . Stark conversations that would be hard to process at the best of times.

Tried to spray my mum’s bread package with anti bac spray ! Fail it tasted of it .
Stay safe
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

JJH
Posts: 290
Joined: Mon Apr 24, 2017 7:26 am

Re: Scary times . . .

Postby JJH » Fri Mar 27, 2020 3:32 am

Is It Safe To Go To The Grocery Store During The Coronavirus Outbreak?
https://www.huffpost.com/entry/safe-grocery-store-coronavirus-outbreak_l_5e710435c5b60fb69ddf23ed
Last edited by JJH on Mon Apr 06, 2020 1:26 am, edited 2 times in total.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

stu
Posts: 1345
Joined: Sat Aug 17, 2013 5:46 pm

Re: Scary times . . .

Postby stu » Fri Mar 27, 2020 3:28 pm

Interesting watch . Thank you for that ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Lee
Posts: 6034
Joined: Sun Apr 16, 2006 4:09 pm

Re: Scary times . . .

Postby Lee » Fri Mar 27, 2020 7:10 pm

I agree, thank you. Just passed along to my husband. Will be passing along to a few other people shortly.

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 - 10 years and counting!

Ulendon
Posts: 52
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: Scary times . . .

Postby Ulendon » Sun Apr 05, 2020 6:44 pm

My LAR is scheduled for Wednesday the 15th and I'm super stressed about it. My mother and sister were going to come and be there with me but now cannot travel so I'll be alone. :(
43 F
DX: RC
Tumor Location: Mid
Type: Adenocarcinoma
Tumor size: 5cm
Tumor Grade: T3b
Clinical: Stage IIIC (cT3, cN2b, cM0)
Suspicious local regional lymph nodes and 1 Extramesorectal lymph node
CEA 3.2 12/4/19
Margins: clear
MSI: intact

11/25/19 colonoscopy
12/2/19 MRI
12/3/19 CT: no evidence of distant spread
12/6/19 Surgery consult: LAR
12/11/19 Oncology: RX: Xeloda, Radiation x28
12/13/19 Radiation Oncology consultation, scan, tattoos

12/26/19-2/5/19 Xeloda, Radiation x28

jep
Posts: 240
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: Scary times . . .

Postby jep » Sun Apr 05, 2020 9:25 pm

Ulendon, that is so stressful and scary to think about. It will be hard to go through it alone (my husband also had an LAR)....maybe the positive is that your scheduled surgery is going to happen and the sooner the better really. Another positive is that in our nearly 3 years of this journey, the nurses have been our saviors....I believe that you will have a similar experience....the nurses will take great care of you and do everything they can to make you comfortable. Also, when I was unable to be with my husband, I was always able to call and speak to his nurses (when they were available). Your family members can do the same, and when you’re feeling up to it, you will be able to call/text/FaceTime with them as well. Praying for you and for a successful surgery!!
jep
Wife of DH (47) Stage IV CC 5/16/17
T Loc: recto-sig
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (started in 11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/4/20 -

annieliz
Posts: 48
Joined: Fri Jul 26, 2019 5:13 pm

Re: Scary times . . .

Postby annieliz » Mon Apr 06, 2020 7:58 am

Same for me, Ulendon. My LAR is scheduled for Tuesday, 4/14. The hospital's new policy is no visitors at all, so we will be "alone together."

Wishing you all the best - I will be thinking of you on Wednesday!

Anne
66 Female
7/15/19 Colonoscopy
7/26/19 DX: Rectal Adenocarcinoma
CEA 8/8/19-1.9, 12/6/19-2.3, 2/28/20-1.7
8/16/19 - 11/23/19 FOLFOX - 8 rounds
10/9 flex sig ~30% shrinkage 11/27/19-a bit more shrinkage
Neulasta 9/29/19, 10/27/19, 11/24/19
25 days Xeloda and radiation 12/17/2019 - 1/22/20
Robotic LAR 4/14/20 - clear margins - 0/15 nodes
Temp ileostomy

Claudine
Posts: 355
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Scary times . . .

Postby Claudine » Mon Apr 06, 2020 12:53 pm

On the plus side, since non-emergency MRIs have been mostly cancelled, we were able to reschedule DH's to tomorrow (instead of Friday). Pain in his leg has been debilitating so it will be good to know what is going on.
Sending many thoughts to you Ulendon and Annieliz for your upcoming surgeries XXXXX
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 7.6
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 small uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20


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