Scary times . . .

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jep
Posts: 250
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Scary times . . .

Postby jep » Mon Mar 16, 2020 3:52 pm

Hey everyone . . . since my husband's diagnosis nearly 3 years ago, I have been a ball of worry and anxiety. He is currently undergoing chemo again, and the Corona Virus seriously has me on edge. We are both school teachers, and we have 2 young children. Schools are all closed here, but I can't stop worrying. We're taking all of the suggested precautions, but is anyone else having a hard time dealing with another (serious) layer of worry (on top of the constant worry that we already live with every day). It's just getting overwhelming for me. He has his 6th treatment on Thursday, and I wish someone could come to the house and administer it here . . . am I stressing too much? Things were just looking up with his CEA level going down and him responding well to treatment so far (and he's been feeling good). Uggghhh . . . anyway, I hope you are all staying safe and healthy throughout all of this. I also pray for our brothers and sisters in Europe and around the world . . . thanks for listening . .
<3
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 -

Siti
Posts: 155
Joined: Thu Aug 01, 2019 10:58 am

Re: Scary times . . .

Postby Siti » Mon Mar 16, 2020 5:53 pm

Hey Jep,

Happy to hear from you and that your husband is responding well to chemo. Something positive to focus on.

Europe is totally not prepared for this or have the capacity to manage to situation. The Dutch government pretty much implied that the only way forward is to slow down the spread but ultimately the human race would need to build their own immunity to fight against this virus (suggesting herd immunity in a nice way)... or until a vaccine becomes available which could take months and cause a massive dent to the economy.

Personally, I am totally overwhelmed to the point I feel like giving up. After an intensive 8 months and my husband is NED, we have this. Not only do I worry about my parents and family back home in Asia which is a 13 hours flight away, I also worry about him every day. I try to focus on the positives, like we have more time together now that everyone is isolating at home. I also look forward to spring, the outdoors and the sun.

In my phone, I’ve listed down things that makes me happy — could as simple as a hot bath, listening to music, going to the beach, etc. Whenever I feel like I can’t cope, I look into my list and I try to check off a few things the next day. It keeps me sane.

As caregivers, we need to take care of ourselves in order to take care of others. I hardly drink, but tonight, I had a glass of single malt whiskey on my own as a treat.

I hope you manage to find some calm.

Sending over plenty of positive energy and love!

Siti
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: 1355
Joined: Sat Aug 17, 2013 5:46 pm

Re: Scary times . . .

Postby stu » Mon Mar 16, 2020 5:59 pm

Thinking of you Jep . You have every right to be concerned . We have to reduce all social contacts that are not absolutely necessary. Our schools are still in but I took my youngest son out . Our country is going for herd immunity. We will let you know how it works out !!!!! My cynical mind is they want the teenagers to be the herd . Not why I took him out of school though . More to do with his father’s employment and reducing risk .
I think I am still in a bit of shock that we have arrived here and the speed of change is incredible.
Hopefully staying home for your family will significantly reduce your risk . Italy reported that some cancer patients were in fact testing positive but showed no symptoms . So that was encouraging . It was not making all of them ill . I think that’s something to hold onto . Italy have also been sharing with other ICU what they have been encountering to allow some minimal preparation.
It feels as though the eye of the storm is coming into our visual field . But our community is rallying round our vulnerable members in humbling ways . Taking the advise and making the adjustments to protect them . Other countries did not get that opportunity. I hope it makes a difference to the outcomes .
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 .

boxhill
Posts: 557
Joined: Fri Apr 06, 2018 11:40 am

Re: Scary times . . .

Postby boxhill » Mon Mar 16, 2020 7:20 pm

My husband called me from work today and said he had just been informed that he could work from home from now on because of me. I said I thought we should wait unti things were more dire, but my son strongly disagreed and said the time to act was now. He also thought that H should stop going to his gym.

At first I just didn't want to limit his activity, but now I think it would be best for him as well as me. If he got sick, who would take care of him?
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment

Claudine
Posts: 386
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Scary times . . .

Postby Claudine » Mon Mar 16, 2020 7:35 pm

We cancelled our trip to California. Things are just too uncertain, and even though DH’s onc said that his immune system has rebounded, we did not want to be spreading the virus around should we catch it. Daughter has found an apartment to sublet, she’ll stay there for now.
The only one happy about this situation is the cat: not only are we not leaving her for a week, but since I can telecommute, she has me at home all day!!
Hang in there everyone xxxxxxxxxx
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - 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 4.4
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

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

Re: Scary times . . .

Postby JJH » Mon Mar 16, 2020 8:11 pm

"The darkest hour is just before the dawn" - Thomas Fuller (1650)

stu
Posts: 1355
Joined: Sat Aug 17, 2013 5:46 pm

Re: Scary times . . .

Postby stu » Wed Mar 18, 2020 3:32 am

There is chaos going on around us but so far we are making the adjustments.
Stay strong everyone ,
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 .

Siti
Posts: 155
Joined: Thu Aug 01, 2019 10:58 am

Re: Scary times . . .

Postby Siti » Wed Mar 18, 2020 4:38 am

By the way, are the medical teams in your area following the international guidelines? It’s quite shocking to see that last Friday when were at the local cancer hospital here, NONE of the medical staff, doctors or janitors wearing any masks. The nurse who administered the IV for my husband was even seen rubbing his face with his hands while he was accessing the computer to check who is the next patient.
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!!

Lee
Posts: 6052
Joined: Sun Apr 16, 2006 4:09 pm

Re: Scary times . . .

Postby Lee » Wed Mar 18, 2020 10:41 am

Two points.

Just took my husband to work, he will not be taking the bus until this coronavirus is gone. We are on a major road, butt not interstate, we saw a car accident at intersection. One car, engine area was totally gone, resting on sidewalk. Other car in middle of intersection, front end was crumpled up like paper. Can only assume, one car was not paying attention to a red light. Probably hit other cars going 45-50 MPH. I hope there were no death, but can only assume, all people involved had to be taken to the hospital. Hope and pray nothing long term serious recovery. Kind of put coronavirus secondary to this accident.

Second point, before leaving, a women was on TV talking about how her cancer journey prepared her for the coronavirus scare. Living with cancer, you don't take life for granted, we don't know what tomorrow will bring. You appreciate each day that you do have. She felt dealing with cancer made her stronger with this scare than most of the people around her that have not dealt with cancer. I believe she is right. You don't come out the other end and not have your view point for ever changed.

Everyone, be safe, be as healthy you can.

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 - 16 years and counting!

stu
Posts: 1355
Joined: Sat Aug 17, 2013 5:46 pm

Re: Scary times . . .

Postby stu » Wed Mar 18, 2020 1:02 pm

Siti ,
In high risk areas they are suited and booted , throughly trained and that includes every member of staff .
My friend is a district nurse and has nothing additional given to her . Just her gloves and apron as usual . They have had to lock the storeroom as it’s been getting stolen.
Think the face is the area you have to avoid . Yikes .
However our young fit student population are walking around with masks on !!
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 .

Siti
Posts: 155
Joined: Thu Aug 01, 2019 10:58 am

Re: Scary times . . .

Postby Siti » Wed Mar 18, 2020 2:12 pm

Stu —
Indeed I heard that supplies are getting stolen! What’s unsettling is that cancer patients are vulnerable especially during treatment yet the staff are behaving like they’re invincible. My best friend is a gynaecologist in Singapore and the hospitals there are so well prepared, that she’s actually representing Singapore to talk about best practices. She’s quite shocked to discover none of the guidelines are implemented at our cancer centre. Just looking at the fatality - active infections rate ratio of Netherlands vs Germany, it’s worrying :|

Lee —
You’re right, I think we’re far more prepared than anyone. When my friends ask me how are we adjusting, I told them things have been like that for us since my husband’s diagnosis.
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!!

Lee
Posts: 6052
Joined: Sun Apr 16, 2006 4:09 pm

Re: Scary times . . .

Postby Lee » Wed Mar 18, 2020 3:59 pm

Had to run a few errands. One location that actually treats people, and usually has 3-6 people in the waiting room was empty. I was there picking up my Ostomy supplies. 2nd stop was a store, sign out front, no more than 10 people in the store at any given time. One person came out as I was going in and that was it. When I was checking out, sales person and I were talking about the virus.

He said he has 5 friends who live in Italy, they are telling him to take this virus SERIOUSLY!! Guess in the beginning, most people around there blew the virus off as something of an overblown flu type situation. Almost a joke. Then it hit and people were dying, And it kept growing. Then the explosion of people getting sick and dying. Now each household can have one approved person to leave the house and run errands. Check points all over the place. This person has to be approved by the government, and must get tested every week. If a person is outside of house and is know to have the virus. That person is charged with felony murder. Guess his friends are telling him, we as a country must do everything we can to stall this virus. If in hindsight it looks like we over reacted, GOOD!!! All it really means is that it worked.

My understanding, there is a shortage of surgical masks, maybe one reason why certain medical personal is not wearing them. Hears on the radio when running errands, that major construction companies are going to donate there unused mask to help ease the situation.

Again be safe and be as healthy as you can.

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 - 16 years and counting!

kiwiinoz
Posts: 1150
Joined: Thu Jan 03, 2013 11:44 pm

Re: Scary times . . .

Postby kiwiinoz » Wed Mar 18, 2020 4:56 pm

Lee, death toll in Italy from the Coronavirus was 427 yesterday (18MAR) so this is not some little virus. Granted it seems to prey more on the immune compromised or those with other health issues but we tend to love in societies that value and try to look after those people. In Italy funerals are banned so it must be so hard for those that lose loved ones to have to grieve at home by themselves.
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 22 May 2019
Port Out 26 March 2015

Lee
Posts: 6052
Joined: Sun Apr 16, 2006 4:09 pm

Re: Scary times . . .

Postby Lee » Wed Mar 18, 2020 5:18 pm

kiwiinoz wrote:Lee, death toll in Italy from the Coronavirus was 427 yesterday (18MAR) so this is not some little virus. . . .


Maybe I didn't explain myself well enough . . . Yes Italy is taking the virus seriously NOW, but in the beginning, guess that was not the case. It was not until many many people were getting sick and dying that Italy took the steps to stall the spread of the virus. His friends message to him, we as a country must do everything we can to stall this virus here NOW in the USA. Not after it has impact many many people, like it did in Italy.

Sorry it that message did not come across well.

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 - 16 years and counting!

boxhill
Posts: 557
Joined: Fri Apr 06, 2018 11:40 am

Re: Scary times . . .

Postby boxhill » Wed Mar 18, 2020 5:35 pm

At my cancer center, all staff, including the receptionists and clerks, are masked, and all patients (and the person with them, if any) are given masks at reception. Big sign at building entrance saying "Purell when you enter and when you leave." All routine followup type appointments are cancelled. Everyone scheduled for an infusion or other physical treatment is being called and pre-screened at home according to CDC guidelines: symptoms, anyone in the household having been on a plane or cruise ship in the prior 12 days, anyone in the household ill or exposed to known ill person.

My accupuncture and PT appointments have all been cancelled as elective, and so has my 3/26 colonoscopy.

Waiting to find out if my onc will call radiology and tell them that my MRI is essential. I think it is. :)
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment


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