Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

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SpringerSpanielMommy
Posts: 23
Joined: Fri Mar 23, 2018 8:52 pm

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby SpringerSpanielMommy » Sun Jun 24, 2018 7:10 pm

The port was put in on Friday and I have had very little pain, which makes me very happy. There is just a weird sensation, kind of a pulling in my neck when I move certain ways. They said I could take Tylenol if I needed, which I have not done. The port will have it's first use on Friday when I start chemo. My daughter's port sits about 2 inches higher on her chest wall than mine does. Mine is actually sitting at the very top of my right breast, half obscured by my bra. It is easily hidden as a result in my clothes with the exception of the incision at my collarbone to access the jugular. I do wonder about the access for the chemo, I guess the catheter will be long enough for regular clothes........sigh.
DX: 2/21/2018 Rectal Cancer: T3c N2 M0, Intramucosal Adenocarcinoma
3/20/2018 Radiation 45gy in 25 fractions, while taking 3000mg Xeloda only radiation days starts 3/28/2018
5/8/2018 Completed Chemoradiation with 5 additional Boosts
6/29/2018 Started 4000mg Xeloda 14 days on and 7 days off. Oxaliplatin Infusion with Power Port.
Joshua 1:9 Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.

boxhill
Posts: 692
Joined: Fri Apr 06, 2018 11:40 am

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby boxhill » Mon Jun 25, 2018 7:22 am

Mine is about where yours is, maybe slightly higher, but certainly not right under the collar bone which is what I was expecting. It isn't visible with v-necks or unbuttoned blouses, nor is the line, because it runs under all my tops when I'm on the pump. The line is quite small and long enough to maneuver with. If you wear the small pump bag like a shoulder bag, the whole thing is really inconspicuous. I was a little self-conscious at first, but I quickly realized that people just don't see it most of the time. When I'm sitting in a restaurant or the like I put the bag on the floor next to my seat, and it's invisible.

Just try not to forget it's there and walk off! :P

Good luck. It has to better than your last experience.
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 and 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
Stop Key
8/20 MRI NED

NHMike
Posts: 2527
Joined: Fri Jul 21, 2017 3:43 am

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby NHMike » Mon Jun 25, 2018 9:54 am

I had the pulling sensation for about a week. It was a little reminder that it was there when I did some motion that it didn't like. It should fade with time. I'm glad that the procedure and aftermath were smooth.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

SpringerSpanielMommy
Posts: 23
Joined: Fri Mar 23, 2018 8:52 pm

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby SpringerSpanielMommy » Mon Jun 25, 2018 7:47 pm

Today my oncologist office called to let me know they had phoned in an RX for numbing cream to put on my port one hour before my appointment, so glad they did this. I can't imagine the port being used this Friday as it is very sensitive to touch, the incision very raw looking, with plenty of bruising at both incisions. For those of you who have had chemo given through a new port do you have any hints on making this experience as good as possible? After my last attempt, I want to have good mojo! :D
DX: 2/21/2018 Rectal Cancer: T3c N2 M0, Intramucosal Adenocarcinoma
3/20/2018 Radiation 45gy in 25 fractions, while taking 3000mg Xeloda only radiation days starts 3/28/2018
5/8/2018 Completed Chemoradiation with 5 additional Boosts
6/29/2018 Started 4000mg Xeloda 14 days on and 7 days off. Oxaliplatin Infusion with Power Port.
Joshua 1:9 Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.

NHMike
Posts: 2527
Joined: Fri Jul 21, 2017 3:43 am

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby NHMike » Mon Jun 25, 2018 8:59 pm

SpringerSpanielMommy wrote:Today my oncologist office called to let me know they had phoned in an RX for numbing cream to put on my port one hour before my appointment, so glad they did this. I can't imagine the port being used this Friday as it is very sensitive to touch, the incision very raw looking, with plenty of bruising at both incisions. For those of you who have had chemo given through a new port do you have any hints on making this experience as good as possible? After my last attempt, I want to have good mojo! :D


I had the bruising and there's a zig-zag scar that remains. I don't see where they can really make the idea of sticking a big needle in your chest pleasant. I always just looked away on hookup and disconnect.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

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Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby Robino1 » Tue Jun 26, 2018 9:16 am

SpringerSpanielMommy wrote:Today my oncologist office called to let me know they had phoned in an RX for numbing cream to put on my port one hour before my appointment, so glad they did this. I can't imagine the port being used this Friday as it is very sensitive to touch, the incision very raw looking, with plenty of bruising at both incisions. For those of you who have had chemo given through a new port do you have any hints on making this experience as good as possible? After my last attempt, I want to have good mojo! :D


The cream is a lifesaver. Just put a little dollop on the port area. Don't rub it in and make sure you do it an hour before your scheduled appointment. Place a small piece of plastic wrap over the dollop to protect your clothes. The cream will hold the wrap to the port area.

The small tube I received when I first started chemo is barely used and I've been doing chemo for over a year. This includes CT scans since I have them use my port for all scans.
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

SpringerSpanielMommy
Posts: 23
Joined: Fri Mar 23, 2018 8:52 pm

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby SpringerSpanielMommy » Tue Jun 26, 2018 6:39 pm

Mike, I am definitely taking your advice and looking away, it kind of creeps me. Robin, for sure I will be using this and thanks for the tip about one hour before the appointment. Today, I picked the RX cream up, the cancer center pharmacy is located beside the open waiting room for the infusion center. There were 2 women talking and both are stage 4 patients, the one has been in treatment for 2 years, encouraging the other just diagnosed women who is very concerned about having 4 teenagers at home. Cancer is so horrible, the good news is there are treatments available, and there are some amazing people in our tribe.
DX: 2/21/2018 Rectal Cancer: T3c N2 M0, Intramucosal Adenocarcinoma
3/20/2018 Radiation 45gy in 25 fractions, while taking 3000mg Xeloda only radiation days starts 3/28/2018
5/8/2018 Completed Chemoradiation with 5 additional Boosts
6/29/2018 Started 4000mg Xeloda 14 days on and 7 days off. Oxaliplatin Infusion with Power Port.
Joshua 1:9 Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.

Caat55
Posts: 680
Joined: Sat Dec 23, 2017 6:01 pm

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby Caat55 » Tue Jun 26, 2018 8:51 pm

SpringerSpanielMommy wrote:Today my oncologist office called to let me know they had phoned in an RX for numbing cream to put on my port one hour before my appointment, so glad they did this. I can't imagine the port being used this Friday as it is very sensitive to touch, the incision very raw looking, with plenty of bruising at both incisions. For those of you who have had chemo given through a new port do you have any hints on making this experience as good as possible? After my last attempt, I want to have good mojo! :D


I can't speak to what it feels like with the numbing agent as I just let them poke me and be done. Once it is in I don't have any pain, there is some tugging, pulling feeling when I move around. There is no pain afterwards. Bring something that doesn't require a great deal of thinking, a variety of things. My sessions last about 5 hours.

Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

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Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby Robino1 » Fri Jun 29, 2018 7:50 pm

Caat55 wrote:
SpringerSpanielMommy wrote:Today my oncologist office called to let me know they had phoned in an RX for numbing cream to put on my port one hour before my appointment, so glad they did this. I can't imagine the port being used this Friday as it is very sensitive to touch, the incision very raw looking, with plenty of bruising at both incisions. For those of you who have had chemo given through a new port do you have any hints on making this experience as good as possible? After my last attempt, I want to have good mojo! :D


I can't speak to what it feels like with the numbing agent as I just let them poke me and be done. Once it is in I don't have any pain, there is some tugging, pulling feeling when I move around. There is no pain afterwards. Bring something that doesn't require a great deal of thinking, a variety of things. My sessions last about 5 hours.

Susan

With the numbing cream, I feel nothing. No poke, no sting. Just a slight pressure as they access the port.
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

SpringerSpanielMommy
Posts: 23
Joined: Fri Mar 23, 2018 8:52 pm

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby SpringerSpanielMommy » Sun Jul 01, 2018 4:55 pm

I hope everyone is enjoying the weekend and the upcoming 4th of July. My daughter is scheduled to have her last chemo for triple negative breast cancer on July 3rd. She broke out with Shingles this past Wednesday and by Thursday they had her on Valtrex, if they are not weeping and scabbed on Tuesday the last treatment will happen, so say a little prayer for her.

Things did not go well with me on Friday for the Oxaliplatin infusion. I finished and was discharged and as I was walking down the hall with my husband my mouth got really tingly and quickly numb, then my tongue started tingling, I wanted to use the bathroom and by the time we got there, my tongue was totally numb and the roof of my mouth and throat were tingling. I told him he needed to come in the bathroom with me as I really had to go and was not sure what was happening to me. I finished and grabbed the toilet paper and my right hand froze into a claw shape, and then the tingling started up that arm and quickly I was numb to my shoulder. I said I think I am having a stroke. We walked back to the nurses station and by then I felt a real heaviness in my chest and was so dizzy. They called my doctor and started an IV in my hand as they said it needed to be immediate and they did not want to tap my port again, I have a huge bruise on my left hand. Honestly, I was so concentrating on keeping myself calm and so dizzy with my eyes closed, I am not sure what all they gave me, but it was touch and go about getting admitted to the hospital, thank goodness they got the reaction stopped. My oncologist said I did not hit the protocol for not being able to have Oxaliplatin again, but the dosage will have to be reduced and I will need to go from 8 sessions to 12 sessions. He is not confident I will be able to handle all those sessions because of the reaction on my first infusion. Please pray I can, as I know Tier 2 drugs are not as effective.

I had immediate cold sensitivity, the first bite sensation many of you had talked about, that is some real pain in the jaw and up into the ears, and it does not matter the temperature of the food. Friday night swallowing was a bit difficult because my tongue was not working right, but I did not choke on anything. Saturday morning I had the numbness and pins and needles in my hands only, and drinking out of a straw makes my lips go numb and spasm. Going into a/c cold drafts makes my throat react and talking is difficult because of coughing.

My daughter had severe toxicity issues with Taxol and this is what they did to get her through the regimen. After the first time with taxol reaction:
50 benedryl
20 dexamethosone
Both via port, 30 min wait time, start infusion

After the 3rd reaction (week 8 or 9)
Night before infusion
6pm 20 dexamethasone oral
12 am 20 dexamethasone oral
At infusion 50 benedryl and 20 dexamethasone via port

I have asked my oncologist if this approach could work getting me through Oxaliplatin as I do not want to become disabled from the chemo, and not have the quality of life after treatment is completed. This is what he is most concerned about happening. Have any of you had this type of reaction and been able to complete the Oxaliplatin regimen?

Thanks so much for helping me through this journey.
DX: 2/21/2018 Rectal Cancer: T3c N2 M0, Intramucosal Adenocarcinoma
3/20/2018 Radiation 45gy in 25 fractions, while taking 3000mg Xeloda only radiation days starts 3/28/2018
5/8/2018 Completed Chemoradiation with 5 additional Boosts
6/29/2018 Started 4000mg Xeloda 14 days on and 7 days off. Oxaliplatin Infusion with Power Port.
Joshua 1:9 Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.

Caat55
Posts: 680
Joined: Sat Dec 23, 2017 6:01 pm

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby Caat55 » Sun Jul 01, 2018 5:50 pm

Wow that sounds so scary. Glad your husband was there.
I had my throat close up from fan blowing air...only thing that kept me calm is having read NH Mike's similar experience. I have experienced claw hand, tongue is always numb, have to drink warm liquids. This is such an unreal experience, being educated helps but nothing prepares you for it. :shock:
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19


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