Scary times . . .

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WarriorSpouse
Posts: 216
Joined: Tue Aug 16, 2016 9:02 pm

Re: Scary times . . .

Postby WarriorSpouse » Mon Apr 06, 2020 2:32 pm

https://clinicaltrials.gov/ct2/show/NCT04275414
A clinical trial of Avastin is currently being used for off label Coronavirus treatments.

For once, cancer patients using Avastin may be the reason why some patients are doing well, considering the circumstances of this current pandemic. I hope all are doing well through these difficult times. On a personal note, one of my college age children is home for online school. His presence back in the house has provided a positive distraction to the current crisis and the CRC fight in general. It has been a refreshing positive change in our household, one that will be remembered for both student and parents alike. #SilverLining
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

stu
Posts: 1341
Joined: Sat Aug 17, 2013 5:46 pm

Re: Scary times . . .

Postby stu » Mon Apr 06, 2020 3:05 pm

For those heading into surgery this week . We will be with you in spirit as you head in . In our thoughts and hearts . I am so sorry you have to go alone . But will look forward to hearing you are safely through .
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 .

stu
Posts: 1341
Joined: Sat Aug 17, 2013 5:46 pm

Re: Scary times . . .

Postby stu » Mon Apr 06, 2020 3:06 pm

This mum is so enjoying having her boys home although I feel for them . We do the occasional drive by to wave in grannies window .
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 .

stu
Posts: 1341
Joined: Sat Aug 17, 2013 5:46 pm

Re: Scary times . . .

Postby stu » Fri Apr 10, 2020 6:13 am

So I have sensed an internal shift in my own narrative. I am now thinking the Mask is going on . Even if it’s just to protect others from me .
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 .

stu
Posts: 1341
Joined: Sat Aug 17, 2013 5:46 pm

Re: Scary times . . .

Postby stu » Fri Apr 10, 2020 6:14 am

Any word from those on the thread heading through surgery this week ?
Hope your safely through ,
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 .

annieliz
Posts: 46
Joined: Fri Jul 26, 2019 5:13 pm

Re: Scary times . . .

Postby annieliz » Fri Apr 10, 2020 10:11 am

Hi Stu,

Not much to report as I head into surgery next Tuesday. A few weeks ago, I had a nice call with one of the nurses who walked me through the whole preparation routine. Earlier this week, the office called again to tell me that I had to get a COVID-19 test 48 hours before surgery; that's scheduled for this Sunday at a satellite office fairly close to my home. Additionally, rather than have the surgery take place in MSKCC's main hospital, it will take place at the Josie Roberston Surgery Center. It's technically an outpatient surgery center where most patients stay for one night at the most. However, since I am having a temporary ileostomy, the surgeon stated that I would be in the hospital for 4 or 5 days. I'm not sure if I will stay there or if they will move me to the main hospital to recover. The plan also provided for a visiting nurse to come to my home to help with ostomy care. Not sure if that's going to happen - maybe they can do it remotely.
I don't know why I feel so calm. Still can't believe it's happening and that I will be spending the next few months dealing with an ileostomy, but I am grateful for all of the great care I have gotten so far and for all of the information and insights I have gotten from this board.
Thanks for checking in. I will keep you posted!

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 scheduled 4/14/20

Ulendon
Posts: 50
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: Scary times . . .

Postby Ulendon » Fri Apr 10, 2020 2:05 pm

I'm heading in next Wednesday. I have a phone appointment in an hour to hear the details I guess. I'm anxious to hear whether I can have someone come with me, though I do understand if I am not. Interesting that they are testing people where you are annieliz. My surgeon said I should leave the hospital in 2 days as long as all is well.
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

stu
Posts: 1341
Joined: Sat Aug 17, 2013 5:46 pm

Re: Scary times . . .

Postby stu » Sat Apr 11, 2020 1:23 pm

Ok , so I had you both in this week . I will be thinking about you both and will keep a close eye on the thread . Harder with the lack of visitors to support but we are right here behind the keyboards all the time for you both .
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 .

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

Re: Scary times . . .

Postby mpbser » Sun Apr 12, 2020 12:15 pm

I (not the cancer patient, my husband is) recently had a colonoscopy and was very impressed by the Endoscopy/Surgical Center's use of PPE and infection control methods. My husband, on the other hand, has found himself left hung out to dry by Dr. Kemeny. We are basically done with her and have to figure out what to do next. Thankfully, he is only undergoing surveillance.

Good luck to everyone undergoing treatment and having surgeries!!! Happy Easter!
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

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

Re: Scary times . . .

Postby Lee » Sun Apr 12, 2020 4:35 pm

stu wrote:So I have sensed an internal shift in my own narrative. I am now thinking the Mask is going on . Even if it’s just to protect others from me .
Stu


That is the new guide lines from the CDC here in the USA sometime during the past week. I ended up making my masks. Can't find any, And I true believe they should go to the First Responders, not me. Not the best masks, butt better than nothing.

One of my friends, her daughter is an EMT and they have had to transport a few people with the coronavirus. That daughter lives in the same house with her 4 yr son. There is also an 84 yr old great grandma. (4 generations in one household). Anyway, that EMT daughter need those mask more than I do.

Good luck to those with upcoming surgeries.

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!

User avatar
juliej
Posts: 3106
Joined: Thu Aug 05, 2010 12:59 pm

Re: Scary times . . .

Postby juliej » Mon Apr 13, 2020 5:56 pm

WarriorSpouse wrote:https://clinicaltrials.gov/ct2/show/NCT04275414
A clinical trial of Avastin is currently being used for off label Coronavirus treatments.

Oh, that weirdly makes sense! Bevacizumab (Avastin) is anti-VEGF and VEGF is a key factor in ARDS! This might really help!

Thanks for sharing!
Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

Ulendon
Posts: 50
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: Scary times . . .

Postby Ulendon » Wed Apr 15, 2020 6:59 am

Laying here getting ready to head in to the hospital. Slept maybe an hour. The prep for the surgery kicked my butt. I made it through most of it, but the last 16 ounce glass was too much and I threw it up and then things got ugly. Spent a few more hours with terrible cramps and naseau. Then took the last dose of pre op antibiotics at 11pm. Lay there for two hours trying not to puke and then didn't make it to the bathroom before making another mess. Tried to sleep but mostly lay here feeling like crap. Got up at 3:30 to drink the pre op beverage. It's almost time to head in to the hospital. I'm really hoping things go better!
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

annieliz
Posts: 46
Joined: Fri Jul 26, 2019 5:13 pm

Re: Scary times . . .

Postby annieliz » Wed Apr 15, 2020 8:33 am

Hang in there-it will be over soon. My prep went well, but like you, I had to get up at 3:30 am to head to the hospital. Once I got there all went smoothly. They gave me a nerve block in pre-op and that worked really well. Haven’t had any real pain yet.
Best wishes for a good experience and speedy recovery - I am thinking about you!
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 scheduled 4/14/20

Ulendon
Posts: 50
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: Scary times . . .

Postby Ulendon » Wed Apr 15, 2020 9:15 am

annieliz wrote:Hang in there-it will be over soon. My prep went well, but like you, I had to get up at 3:30 am to head to the hospital. Once I got there all went smoothly. They gave me a nerve block in pre-op and that worked really well. Haven’t had any real pain yet.
Best wishes for a good experience and speedy recovery - I am thinking about you!


I'm so glad your surgery went well. I've been thinking about you! I kind of feel like we're in this together.

Threw up again here in prep op. My blood pressure is super high too. The nurses have been super nice though. Can't wait to be unconscious!
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: 228
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: Scary times . . .

Postby jep » Wed Apr 15, 2020 9:20 am

Praying that you all have successful surgeries and smooth recoveries . . . this is not easy, as I watched my husband go through 3 major surgeries in less than 3 years . . . it's been a struggle and he's had many complications, but some how he makes it through (with the help of his amazing surgeon and all of the incredible nurses and health care workers . . . God bless them always, and especially now). He also has an amazingly positive and up beat attitude, which I think has really helped. Try to stay positive and know that you will be recovering soon!
Prayers to you and your loved ones,
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 -


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