NEW-Need some positivity here.

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Robino1
Posts: 461
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: NEW-Need some positivity here.

Postby Robino1 » Fri Oct 20, 2017 6:12 pm

I have chosen to not dye my hair until after I am done with chemo. I have noticed that the hairs that are coming out the fastest are the ones that have been bleached to receive the color. I am going to get it trimmed in November but am not going to get color.

I happened to get it colored just before my latest diagnosis. So it still is not looking too bad. My color lasts a very long time and my hair has a very slow growing cycle. Takes forever for it to get any length after I get it cut short. I can easily go 6+ months between coloring.

I haven't noticed any extra drying but then again, I have naturally curly dry hair.
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

Beckster
Posts: 257
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: NEW-Need some positivity here.

Postby Beckster » Fri Oct 20, 2017 6:27 pm

teacher2017 wrote:Here's the question of the hour for the ladies- can I dye my hair on chemo?


I dyed my hair throughout chemo... I also had a manicures and pedicures. When I asked my onc if I could, he said "Why not?...Yes" It is bad enough that I was on chemo, I was not going to go grey too!
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Tumor type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Tumor grade: G3 (surgical) G2 (pre-op)
TNM: T3N0M0/IIA
lymph nodes: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17, 12/12/17, 6/18/17 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/17-3.1, 6/17-3.0
Clear Colonoscopy 10/17 :D

teacher2017
Posts: 146
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Fri Oct 20, 2017 7:30 pm

Lee wrote:
teacher2017 wrote:Here's the question of the hour for the ladies- can I dye my hair on chemo?


Ask your Onc, but I don't think they want you to. Will also say, I don't believe they will talk you out of it either. Will Say, FOLFOX really frizzed my hair. Dying your hair could make it worse.

Hope this helps,

Lee


When I was pregnant we used non-permanent hair color or a rinse. I may ask the oncologist what she thinks.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18

teacher2017
Posts: 146
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Fri Oct 20, 2017 7:37 pm

Beckster wrote:
teacher2017 wrote:Here's the question of the hour for the ladies- can I dye my hair on chemo?


I dyed my hair throughout chemo... I also had a manicures and pedicures. When I asked my onc if I could, he said "Why not?...Yes" It is bad enough that I was on chemo, I was not going to go grey too!


Sounds good to me! If she tells me a message is ok, I'll book one a month if I have to be tortured with chemo.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18

teacher2017
Posts: 146
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sun Oct 22, 2017 7:56 am

Headed to Urgent Care this morning. so sick of this cough. I can't catch my breath sometimes and nothing has worked. I can not sleep. I can't start chemo or get the port unless this goes away. Any tricks to get rid of a cough? I was on a z pack, pregnisone, amox, cough drops, DayQuil, Claritin, etc. What else is there? Chest is clear according to last dr and ctscan.

Update- advair. That and Mucinex. She took an X-ray and I prayed during and while I waited. She saw a clear chest X-ray- and no mets or nodules or masses. Thank God. Everyone is coughing in the waiting room. I guess it's the season!
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18

teacher2017
Posts: 146
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Tue Oct 24, 2017 9:20 am

Question for those who were on folfox and the stupid fanny pack- did you have a family member unhook/disconnect you? Do you need a nurse? Does it need to be flushed? I'm sure I will get some training but I thought I'd ask ahead of time.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18

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Robino1
Posts: 461
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: NEW-Need some positivity here.

Postby Robino1 » Tue Oct 24, 2017 9:54 am

I'm only 5 minutes away from the office. I go there and get disconnected. I've heard that you can get training to disconnect yourself. Personally, I'm not comfortable even thinking about disconnecting myself but if you feel like you can, go for it and get the training.

:)
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

jep
Posts: 67
Joined: Sun Jun 11, 2017 7:45 pm

Re: NEW-Need some positivity here.

Postby jep » Tue Oct 24, 2017 9:30 pm

The nurses trained me to disconnect my husband's pump, but I haven't done it yet. I think it's good to be trained and comfortable doing it because you may have plans to go away for the weekend (or some other plans) and being able to disconnect on your own will give more freedom. I know it's hard to imagine getting away....it was for us, but here we are making plans and living life. I'm nervous to disconnect, but if my hubby needs me to, I will. He can always talk me through it, as he's seen it done 5 times already. Treatment #6 tomorrow! Good luck and God bless!!!
jep
Husband DX Stage IV CC on May 16, 2017
47 years old
Tumor Location: recto-sigmoid
Tumor type: Adenocarcinoma
Tumor size: 7.4 cm
Tumor grade: G3
TNM code: T3N2M1
Positive lymph nodes: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
Surgical margins: clear (w/in microns)
Primary surgery type: LAR
Folfox (August 2017-January 2018)

teacher2017
Posts: 146
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Wed Oct 25, 2017 4:10 pm

Was just at the oncologist and got my port education and chemo info. What a thrill. Why is everyone so calm in the waiting room? This was surreal to me.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18

DonutHead
Posts: 35
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Wed Oct 25, 2017 4:16 pm

Yay, you are once step closer to getting it on with the chemo party! you have to be calm, accept it, do it, and carry on! you got this!

Mark
Male 49 yrs.
09/10/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma - NOT Genetic
09/13/2017: CT - No Mets - Very slightly enlarged LN
09/19/2017: Chest Xray, CBC, CEA 2.0. normal
09/20/2017: LAP Rectosigmoid - 8' and 25 LNs removed
09/21/2017: Biopsy - 1/25 LN slight molecular invasion
Dx: Stage IIIa - T3 N1 MX
Chemo: Ox stopped after rnd 3 of 8; 5 cycles of 4000mg Xeloda remaining
10/09/2017: PET negative; no molecular activity, no metabolic activity, NED. T3 N1a M0

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Robino1
Posts: 461
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: NEW-Need some positivity here.

Postby Robino1 » Wed Oct 25, 2017 4:39 pm

teacher2017 wrote:Was just at the oncologist and got my port education and chemo info. What a thrill. Why is everyone so calm in the waiting room? This was surreal to me.

Probably because they've gone through the scared, crying, and every other emotion that goes along with getting a cancer diagnosis. They are now on the other side of it and have gotten to the this is what I'm fighting and I'm going to kick ass or they've just accepted that this is what it is.

Once I got the first chemo done, I knew what to expect.

Sometimes when we've seen the same people over and over again, we can actually find humor in things. One lady just gives out hugs to anyone. She feels like we all need hugs just because.

We tend to celebrate each small step anyone makes. Positivity goes a long way in getting through this thing we all have in common at least for me it does.

One gentleman was so negative about everything. Could not find the positive in anything. After he was done and had gone, a couple of people voiced my thoughts in that he probably won't do well in the long run. He complained about the port, the length of time he had to spend at chemo... I don't think he had one positive thing to say. I tried to turn his thinking around but no go.

We all go through our phases and hopefully we come out stronger and more capable. {{{ hugs}}}. Cuz we all need them. :)
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

teacher2017
Posts: 146
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Wed Oct 25, 2017 6:10 pm

I have noticed that my health got better once I changed my attitude. It does go in waves. I can see how the phases of grief have to happen. I know I can get throw the chemo. I am determined and know I have no choice. So let's get on with it then!!!! Bring it on!
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18

DonutHead
Posts: 35
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Wed Oct 25, 2017 8:08 pm

:D that is the spirit!
Male 49 yrs.
09/10/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma - NOT Genetic
09/13/2017: CT - No Mets - Very slightly enlarged LN
09/19/2017: Chest Xray, CBC, CEA 2.0. normal
09/20/2017: LAP Rectosigmoid - 8' and 25 LNs removed
09/21/2017: Biopsy - 1/25 LN slight molecular invasion
Dx: Stage IIIa - T3 N1 MX
Chemo: Ox stopped after rnd 3 of 8; 5 cycles of 4000mg Xeloda remaining
10/09/2017: PET negative; no molecular activity, no metabolic activity, NED. T3 N1a M0

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Shana
Posts: 379
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: NEW-Need some positivity here.

Postby Shana » Wed Oct 25, 2017 10:30 pm

Robino1 wrote:
teacher2017 wrote:Was just at the oncologist and got my port education and chemo info. What a thrill. Why is everyone so calm in the waiting room? This was surreal to me.

Probably because they've gone through the scared, crying, and every other emotion that goes along with getting a cancer diagnosis. They are now on the other side of it and have gotten to the this is what I'm fighting and I'm going to kick ass or they've just accepted that this is what it is.

Once I got the first chemo done, I knew what to expect.

Sometimes when we've seen the same people over and over again, we can actually find humor in things. One lady just gives out hugs to anyone. She feels like we all need hugs just because.

We tend to celebrate each small step anyone makes. Positivity goes a long way in getting through this thing we all have in common at least for me it does.

One gentleman was so negative about everything. Could not find the positive in anything. After he was done and had gone, a couple of people voiced my thoughts in that he probably won't do well in the long run. He complained about the port, the length of time he had to spend at chemo... I don't think he had one positive thing to say. I tried to turn his thinking around but no go.

I agree with Robin, great advice! Stay positive and carry on! This is a detour in your path and you just need to kick this and get back on the main road again. I an actually visualize chemo as a detour from my designated journey, I just need to deal with it, get past it and move forward hopefully to NEDville.

We all go through our phases and hopefully we come out stronger and more capable. {{{ hugs}}}. Cuz we all need them. :)
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!

Aqx99
Posts: 400
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: NEW-Need some positivity here.

Postby Aqx99 » Thu Oct 26, 2017 6:46 am

teacher2017 wrote:I have noticed that my health got better once I changed my attitude. It does go in waves. I can see how the phases of grief have to happen. I know I can get throw the chemo. I am determined and know I have no choice. So let's get on with it then!!!! Bring it on!


This is exactly the attitude you need going in to this. You have a marathon of treatment ahead of you. It takes a lot of strength to get through it. I started going downhill with all the crap my husband has laid on me, but since I started getting help for that I have improved again. Attitude really is everything with this. We're here to support you, keep us updated!
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Diagnosis, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Diagnosed w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
9/18 Bilateral Prophylactic Mastectomy


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