Please help, input needed

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Ulendon
Posts: 55
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: Please help, input needed

Postby Ulendon » Tue May 26, 2020 12:37 pm

I'm doing really poorly. I haven't slept much at all since the infusion and I'm trying to work today. Just got done vomiting in my office. This really doesn't feel sustainable. I feel like my body weighs a thousand pounds. I'm weak and shaky and can hardly think straight. I ache all over. Now I'm worried about driving home.

I'm afraid to take the compazine because I'm already exhausted. I did take a zofran tab while I was vomiting to make it stop before I puked up my xeloda but I know there was a reason that wasn't recommended. I can't remember why right now.

My ostomy appliance has been a nightmare and the pain from that in addition to just general abdominal pain makes sleep impossible. For the first time, I'm feeling like I can't do this.
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

Claudine
Posts: 410
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Please help, input needed

Postby Claudine » Tue May 26, 2020 1:42 pm

Gosh that sounds awful Ulendon, I'm really sorry you have to go through this while working! Any chance you can take some sick leave for a day or two after your chemo? DH worked through his treatment but he has a pretty flexible schedule. We have a finance admin in our office who has chemo for small bowel adenocarcinoma once a month; when that happens, she stays home for 48 hours. When she runs out of sick leave, there's the possibility of others to donate some of theirs, so she does not suffer any loss of income. Anything like this a possibility for you?
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 24.1
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

Basil
Posts: 270
Joined: Thu Mar 16, 2017 12:33 pm

Re: Please help, input needed

Postby Basil » Tue May 26, 2020 6:59 pm

I remember feeling like I couldn’t do more chemo. I didn’t have that much of it but it hit me pretty hard. When I felt like I couldn’t handle another round, I did the stiff upper lip bit and had another round. Terrible, unhelpful advice, I know. But Just keep going. It ends faster than you think for most people.
40 y/o male, kids 8&11
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear

User avatar
Jack&KatiesMommy
Posts: 621
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Please help, input needed

Postby Jack&KatiesMommy » Tue May 26, 2020 7:53 pm

I am so sorry you are going throguh this. I wish there was something that I could od to help you get through this pain and agony. All that I can do is share my experience to give you some hope. I have been fighting this battle for 9 years this August. I am in a really good place now (I am NED as far as we can see and am on immunotherapy.). HOWEVER, I was on chemo (folfuri & Xeloda) for 3 years and Folfox and Xeloda for 6 months and just Xeloda for 3 1/2 years. I have liver resection, lung resection, lung radio frquent ablations (8) and worked full time throughout. I did do all my chemo on Fridays so the worst symptoms hit me over the weekend. I was fortunate to have an understanding company that allowed me to do simpler tasks (I am a lawyer) and didn't expect me to put in the hours I had prior to cancer. Can you schedule your chemo on Friday? Can you take some time off when you need it to recover? It will get better. I thought, at some point that I coulldn't go on...that it was so bad that I didn't want to go on.....but I pushed through and it did always get better. I was nauseous from the chemo and had a lot of pain and some depression after each of my surgeries....but looking bak I am so glad tht I hung on.....all of it got better. Thinking of you!
Cynthia
Cynthia
Mommy to Jack (8) now (17) and Katie (4) now (13)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

Ulendon
Posts: 55
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: Please help, input needed

Postby Ulendon » Thu May 28, 2020 1:07 pm

Things are a little better. I think we may have found an appliance that will work for my ostomy. Wound nurse says I'm not the worst case she has had but in the top 5 :/ So anyway I slept through last night without leaking. I was up checking it every few hours but definitely got more sleep than I have had in weeks. I still feel super weak and delicate, not normally a word used to describe me, but haven't vomited.

I rescheduled my chemo infusions for fridays so I can be the worst over the weekend but it seems like it takes almost a week for me to feel better. I will just have to suck it up and work through things as much as possible. It really doesn't feel feasible but all I can do is try. My brain is definitely not at full capacity so work is slow.
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

Ulendon
Posts: 55
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: Please help, input needed

Postby Ulendon » Wed Jun 17, 2020 12:42 pm

Ugh, how do people do this? This is day 6 after my second infusion and I'm still puking and nauseated. I have to work if I don't want to be homeless and it's just so hard. I emailed the doctor to see if we can switch up the meds somehow so mornings aren't so horrible.
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

kandj
Posts: 301
Joined: Sun Sep 27, 2015 11:29 am

Re: Please help, input needed

Postby kandj » Wed Jun 17, 2020 10:54 pm

Ulendon wrote:Ugh, how do people do this? This is day 6 after my second infusion and I'm still puking and nauseated. I have to work if I don't want to be homeless and it's just so hard. I emailed the doctor to see if we can switch up the meds somehow so mornings aren't so horrible.


So my husband handled the first infusion well but the second one was a bitch. On the day the bag was to come off I didn't know if I should take him to the ER or the oncologists. They gave him fluids when we got there and IV anti nausea. The Onc added in Emend to his premeds the next infusion. MUCH BETTER! No more throwing up. He still got fluids and some steroids on the 3rd day when the bag got off, made a big difference.My guess is you have Aloxi in your premeds. Ask about adding Emend.
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19 lung/adrenal gland recurrence 11/19
Adrenal ablation2/20 Robotic Assisted VATS 3/20 Xeloda again

margiej
Posts: 99
Joined: Sat Apr 14, 2018 8:46 am

Re: Please help, input needed

Postby margiej » Thu Jun 18, 2020 9:01 am

I am so sorry you are on the middle of this, Ulendon.. it's really hard but you will get through it. After my doctor added Emend to my infusion I felt relatively good for about three days. I ate as much as I could on those days to get my strength up. Xeloda made me extremely ill though..unable to eat or drink much or even swallow. Try to stay as hydrated as you can..dehydration makes the nausea worse. I would usually have to go in to get IV fluids a couple times each chemo round...that usually made me feel a bit better. I was not aware that folic acid interacts adversely with xeloda back when I was taking it and can make side effects worse...and my doctor never mentioned it. Folic acid is in so many things... cereals, enriched flour etc. Bread pretty much needs to be organic to avoid folic acid supplementation. I don't know if it will help but it's something to consider and something I wish I knew at the time.
I'll be thinking of you.
Margie
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
Clear Colonoscopy 3/2017 and 1/2020
CT 10/3/17 clear
CT 10/17/18 clear
CT 10/17/19 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
11/18 1.2


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