NEW-Need some positivity here.

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AmyG
Posts: 245
Joined: Tue Dec 25, 2018 8:08 pm

Re: NEW-Need some positivity here.

Postby AmyG » Mon Jul 15, 2019 10:58 pm

They blamed my heavy bleeding on hemorrhoids being upset by the Avastin.

Stupid drugs, but hey, they're working so I'll deal with the bullshit! :lol:
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!!

islander717
Posts: 2
Joined: Mon Jul 15, 2019 9:58 am

Re: NEW-Need some positivity here.

Postby islander717 » Wed Jul 17, 2019 5:39 pm

teacher2017 wrote:
Hi- after speaking with the gi, he said it was most definitely the chemo. He told me to treat it like a very bad hemorrhoid. Very bland food, soups, Metamucil each day, etc. It went away thank goodness. Your body is reacting to the chemo for sure. Tell the dr to be safe. You can do this! This will pass- you will get your life back and you will be okay. Keep saying it. Chemo is strong medicine. Let it do it’s job.

Lydia


Thank you for replying. Started taking stool softeners now to hopefully lessen the effect as I experience hard stool. Really appreciate the encouragement and the information from the this board has been helpful!

teacher2017
Posts: 251
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Fri Jul 26, 2019 7:30 pm

Would love to know what this could be but I really don’t want to see my doctor. I’m usually very achy in the morning - knees are killing me, left upper shoulder pain. Ok I get I’m overweight but I can’t really walk far or workout in this condition. No idea how it happened. Started at the end of June. Been on Otezla for psoriasis since two weeks ago but I don’t think that’s it. Could it be the Cimetidine that I take everyday? I can’t seem to go one day or night without 2 Advil’s. How will this play on my liver? Only two days did I walk for hours in pain to have the next day NOT be in pain. What is this? Anyone else have this weirdness. I’m hoping it nothing but old age.
48 yo female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection 9/22/17
6.1cm tumor
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea level- 1.8 6/18
Cea level- 2.1. 8/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/18
Cea level- 1.5 10/18
Cea level- 1.2 12/18
Clear scan- 12/5/18
Cea level- 1.1 3/19
Clear scan- 3/19
Cea level- 1.2 6/19
Clear scan- 6/2/19
Colonoscopy - 7/19 CLEAR
Cea level- 1.5 8/19
Clear scan - 8/19!

stu
Posts: 1183
Joined: Sat Aug 17, 2013 5:46 pm

Re: NEW-Need some positivity here.

Postby stu » Tue Jul 30, 2019 3:01 am

I have had a lot of pain going through peri menopause. Living off over the counter pain meds . Some days a walk helped other days it seemed to make it worse .
It is getting better . I kept going and started building my core strength up . Walking was all I could tolerate initially. I noted it was worse at certain points in the month . I do have underlying hyper mobility and it seems to have aggravated it . For me it really is now starting to get better .
Just wondered if it may be similar issues or possible not !
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 .

teacher2017
Posts: 251
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Thu Aug 01, 2019 3:18 pm

stu wrote:I have had a lot of pain going through peri menopause. Living off over the counter pain meds . Some days a walk helped other days it seemed to make it worse .
It is getting better . I kept going and started building my core strength up . Walking was all I could tolerate initially. I noted it was worse at certain points in the month . I do have underlying hyper mobility and it seems to have aggravated it . For me it really is now starting to get better .
Just wondered if it may be similar issues or possible not !
Take care,
Stu


Thanks! I’m thinking it’s the Otezla I’m taking.
48 yo female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection 9/22/17
6.1cm tumor
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea level- 1.8 6/18
Cea level- 2.1. 8/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/18
Cea level- 1.5 10/18
Cea level- 1.2 12/18
Clear scan- 12/5/18
Cea level- 1.1 3/19
Clear scan- 3/19
Cea level- 1.2 6/19
Clear scan- 6/2/19
Colonoscopy - 7/19 CLEAR
Cea level- 1.5 8/19
Clear scan - 8/19!

teacher2017
Posts: 251
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Thu Aug 22, 2019 2:14 pm

Ok one year scan is on Saturday morning. Scary is the word. I feel fine and am terrified. I really just want to teach on sept 5 and have a normal school year. I can’t believe that I am
Planning surgery and chemos in my head even before I’m told any results. I think I’m preparing for the worst. I will keep you all posted. What can I eat to get all my numbers to be a-okay???
I’m also thinking of asking to have this port removed. I need to be normal and free of this. But I worry she’ll say one more year....
48 yo female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection 9/22/17
6.1cm tumor
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea level- 1.8 6/18
Cea level- 2.1. 8/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/18
Cea level- 1.5 10/18
Cea level- 1.2 12/18
Clear scan- 12/5/18
Cea level- 1.1 3/19
Clear scan- 3/19
Cea level- 1.2 6/19
Clear scan- 6/2/19
Colonoscopy - 7/19 CLEAR
Cea level- 1.5 8/19
Clear scan - 8/19!

DonutHead
Posts: 60
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Thu Aug 22, 2019 2:53 pm

oh, man....i know the feeling. coming up on my two years following surgery and am terrified. i get numb thinking of the possibilities. But you know what? Life is meant for living. We could have been hit by a bus by now. I lost friends in the world trade center in New York. We have life and are living. You will be okay. You made it through the liver scare, didn't you? Get through this and get the port removed. I wish I could post it, but I had mine removed and a tattoo of a horseshoe with the word Lucky above it in its place to spit in the face of cancer. We never know how we will leave this world, but we should control our destiny as much as we can. Hopes and prayers gunning your way, but I am confident you will be okay!
Male 49 yrs.
09/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma
- CT - slightly enlarged LN; CEA 2.0
- LAP Rectosigmoid - 8' and 25 LNs removed
- Biopsy - 1/25 LN slight molecular invasion
- Stage IIIa - T3 N1 M0
- Chemo: 3 of 8 rds Ox; 8 rds 4000mg Xeloda
10/2017: PET - NED
03/2018: PET/CT - NED
09/2018: PET/CT - NED
03/2019: CT - NED
Still Here!

DonutHead
Posts: 60
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Thu Aug 22, 2019 2:56 pm

eat oatmeal and as many vegetables that you can scarf down! spit shine that colon of yours!
Male 49 yrs.
09/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma
- CT - slightly enlarged LN; CEA 2.0
- LAP Rectosigmoid - 8' and 25 LNs removed
- Biopsy - 1/25 LN slight molecular invasion
- Stage IIIa - T3 N1 M0
- Chemo: 3 of 8 rds Ox; 8 rds 4000mg Xeloda
10/2017: PET - NED
03/2018: PET/CT - NED
09/2018: PET/CT - NED
03/2019: CT - NED
Still Here!

Punky44
Posts: 349
Joined: Mon Oct 01, 2018 4:29 pm

Re: NEW-Need some positivity here.

Postby Punky44 » Thu Aug 22, 2019 10:47 pm

Sending you good vibes on Saturday!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9
6/28/19 Reversal and port out

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

teacher2017
Posts: 251
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sat Aug 24, 2019 5:09 am

DonutHead wrote:eat oatmeal and as many vegetables that you can scarf down! spit shine that colon of yours!



That just made me laugh out loud!!! On it!!!
48 yo female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection 9/22/17
6.1cm tumor
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea level- 1.8 6/18
Cea level- 2.1. 8/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/18
Cea level- 1.5 10/18
Cea level- 1.2 12/18
Clear scan- 12/5/18
Cea level- 1.1 3/19
Clear scan- 3/19
Cea level- 1.2 6/19
Clear scan- 6/2/19
Colonoscopy - 7/19 CLEAR
Cea level- 1.5 8/19
Clear scan - 8/19!

Beckster
Posts: 386
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: NEW-Need some positivity here.

Postby Beckster » Sat Aug 24, 2019 6:07 am

Positive vibes coming you way for today!
57/F
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3 (path) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion
1/2/17 to 6/9/17- Xeloda monotherapy
6/17,12/17,6/18,12/18 6/19 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6
Clear Colonoscopy 10/17 :D

teacher2017
Posts: 251
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sat Aug 24, 2019 9:25 pm

I had a very rough day. PTSD at its finest. I had a scan today with bloodwork. No nurses at MSK so they decided to send anyone with a port to the chemo suites to get accessed. I was very upset- like panic attack upset. I went to the chemo suites crying and refused to sit in the reclining chemo chair. I’m sure my chart now has crazy woman on it. To top it all off after the scan, they go to deaccess the port and it bleeds slightly. I get up, use the bathroom, go to wash my hands and notice a lot blood pouring out of my port onto my shirt and in my bra. I run to the nurses station. Why did it happen? I basically ran home. Also, my cea went from 1.1, 1.2, to today’s 1.5. Should I be worried?
48 yo female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection 9/22/17
6.1cm tumor
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea level- 1.8 6/18
Cea level- 2.1. 8/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/18
Cea level- 1.5 10/18
Cea level- 1.2 12/18
Clear scan- 12/5/18
Cea level- 1.1 3/19
Clear scan- 3/19
Cea level- 1.2 6/19
Clear scan- 6/2/19
Colonoscopy - 7/19 CLEAR
Cea level- 1.5 8/19
Clear scan - 8/19!

DonutHead
Posts: 60
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Sun Aug 25, 2019 12:06 am

you are not a crazy woman, you just had a bad day! we all have those and it is not something to beat yourself up over. i remember telling my doctor that my port was coming out, i didn't care what happened or what he thought, my body and i am paying for the procedure. the bleeding is normal and an ever so slight rise in your CEA is meaningless. a .2 rise is not even something you should blink over. If it were 20.something then maybe there is cause for concern. environmental changes, biological changes, exposure to certain conditions can all contribute to a rise in your CEA count. Take my count, it has always been at a steady 2.0, even when i had cancer and after treatment. My last bloodwork pegged it at 2.0 and it's been almost 2 years now.

Just hit reset and try again. if you are not comfortable with your port being accessed, say so. They are there to serve you. BIG hug to you. You got this, nothing to be worried ove!
Male 49 yrs.
09/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma
- CT - slightly enlarged LN; CEA 2.0
- LAP Rectosigmoid - 8' and 25 LNs removed
- Biopsy - 1/25 LN slight molecular invasion
- Stage IIIa - T3 N1 M0
- Chemo: 3 of 8 rds Ox; 8 rds 4000mg Xeloda
10/2017: PET - NED
03/2018: PET/CT - NED
09/2018: PET/CT - NED
03/2019: CT - NED
Still Here!

User avatar
Atoq
Posts: 340
Joined: Wed Oct 25, 2017 9:31 am

Re: NEW-Need some positivity here.

Postby Atoq » Sun Aug 25, 2019 1:59 am

When will you know the results of the last scan? I also had one on the 20th of August, light CAT to the chest and ecography to the liver. I will have a scope on the 4th of September and then get the answer. But I am not worried, if I am sick I will face it when it is real and not just a possibility. I know is not something you can control but just to give another point of view. A big hug and good luck!

Claudia
45 year old, mother of 2
Dx rectal cancer 10.2017
T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, stage IV
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 colonscopy
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2

User avatar
Atoq
Posts: 340
Joined: Wed Oct 25, 2017 9:31 am

Re: NEW-Need some positivity here.

Postby Atoq » Sun Aug 25, 2019 2:05 am

When will you know the results of the last scan? I also had one on the 20th of August, light CAT to the chest and ecography to the liver. I will have a scope on the 4th of September and then get the answer. But I am not worried, if I am sick I will face it when it is real and not just a possibility. I know is not something you can control but just to give another point of view. A big hug and good luck!

Claudia
45 year old, mother of 2
Dx rectal cancer 10.2017
T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, stage IV
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 colonscopy
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2


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