Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

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Soccermom2boys
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Joined: Tue Nov 10, 2015 10:29 pm

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

Postby Soccermom2boys » Sun Apr 29, 2018 10:03 pm

SpringerSpanielMommy wrote: I have been able to balance working and having my clients not know what is going on with my diagnosis or treatment as it would be destructive to my business. Any hints on what to do to power through the systemic chemo as strongly as possible will be appreciated. I will be taking oxaliplatin, 5 fu and leucovorin for 6 months.


Congrats on winding down with the radiation treatments, one hurdle about to be complete! Gotta celebrate these small victories when we can. :D

So I did 8 rounds of FOLFOX and I am a high school teacher (fortunately I have been part-time for past ten years so that was a big reason it was do-able to work through chemo as well). My students had no idea as did most of the other staff (only a small handful did I share with that I had cancer) that I was going through all of that. It will be based on your insurance, but when you go to have your chemo teaching session, inquire about the small tennis-ball shaped pump. It makes no noise and by the next day after the infusion starts it can easily be tucked in a pocket with the small tubing and truly, no one will have a clue. I also was clever with what I wore—scarves to hide my neck/chest area so no one would see the port/tape over it, tops that were flowing and long enough to cover over the pump in my pocket.

It is no cliche to say that we all respond differently—my experience was that I felt an overall sense of feeling crummy from infusion day (I always went in on Mondays), but by Saturday I started to come back around. I never once felt nauseous, got the meds for it just in case but never touched them. After the fourth round I could tell it was wearing me out more so for the last four rounds, I always took the day after my disconnect off from work and that made a world of difference. I would come back in on Friday and be able to get through that one day of work and have the weekend to rest up and enjoy my off week as much as one can during such a situation. I say all of this to let you know that there is such a wide range of experiences from these treatments. Some things you can generally count on like cold sensitivity and feeling cruddy, but the degree and range of side effects is unique to each individual. I went all 8 treatments with hardly any neuropathy to speak of in my feet, but my hands were definitely starting to feel it. Well, a month after my last treatment the neuropathy kicked in to high gear and now, two years later I still have the constant uncomfortable feeling in my feet, don’t see that I will ever casually walk barefoot again and am just trying to accept that this is my new normal. My hands however are fine, just once in a long while I notice them get an arthritic feeling, but then it goes away after I move them a bit. My experience with FOLFOX was that it was miserable, but tolerable. Be prepared to feel like crap, but also know that it may not be as bad for your body.

Thanks for coming back to let us know how it’s going. Always nice to hear when someone completes a stage of the process. Best of luck and know that we are here if you need us! :)
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

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O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

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

Postby O Stoma Mia » Tue May 01, 2018 12:23 am

SpringerSpanielMommy wrote:... I see the chemo onc this coming Friday and I will be scheduled to have a port placed in my chest...

Did they tell you what kind of port will be implanted? Did they explain the different kinds of ports and the advantages and disadvantages of each? Were you given a choice?

Some ports are better/more-convenient than others. Here is an overview of the basic port types:

https://www.mskcc.org/cancer-care/patient-education/your-implanted-port

Alsoo, it's the sane with chemo infusion ports. Some are better than others.

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 04, 2018 7:11 pm

Friends, this Friday I am having a chest CT scan to check on the small nodule in my right lung and an MRI to see the response to the chemoradiation. I finished my 30 radiation sessions on May 8, 2018. Say a prayer that all the scans will have good responses, they are going to re-stage me. The plan at this point is the tumor board will meet next Thursday to discuss my case and make the final decision on the next step in treatment.

I am tentatively scheduled for an infusion of oxaliplatin on June 15th and again on July 6th, the doctor is planning on 3 months of chemotherapy which will include taking 4000mg of Xeloda 14 days on and off 7 days, instead of doing the Fulfox infusion. My chemo doctor who is from MD Anderson has looked at studies which show that there is a potentially better response with the consistent dosage in the body with the pills instead of the more spread out infusion dosages. I asked about scheduling a port and he said he has lots of patients that have very successfully done the oxaliplatin infusions in a vein and he wants me to try this first as he really believes it will be fine, as it will not be long term. I am super nervous about that, has anyone here done it without a port?

Another issue I am embarrassed to bring up here, but am sure many of you have experienced is the radiation treatment has made me only able to use the medium dilator. It is IMPOSSIBLE to get the large one in and if this is my new reality it will mean my husband and I will not be able to have sex. I have let the doctor know and they are going to make me an appointment with gynecology but because my tumor was so low, they said I should only use the medium dilator to keep things as open as possible.

I am frankly terrified about the potential side effects of the oxaliplatin and am dreading going back on Xeloda, I know many of you have gone before me on this path, and have been such a help to me as I read your posts and follow your lead. It has brought great comfort to be a part of this community.
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.

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O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

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

Postby O Stoma Mia » Tue Jun 05, 2018 12:37 am

SpringerSpanielMommy wrote:...I asked about scheduling a port and he said he has lots of patients that have very successfully done the oxaliplatin infusions in a vein and he wants me to try this first as he really believes it will be fine, as it will not be long term. I am super nervous about that, has anyone here done it without a port?..

Yes, I did my first four transfusions by remote IV to veins in the lower arm. In my case, this was a big mistake. My veins were small to begin with (due partly to my age), and with exposure to oxaliplatin they became smaller still and more brittle. The nurses could never use the same vein for two infusions in a row, because that particular vein had shrunk to a very small diameter after just one infusion. After 4 infusions the nurse simply could not find any veins at all in my lower arms that would accept the needle/cannula for infusion.

In my case it definitely was not "fine", in part because at the setup for the third infusion the nurse punctured a brittle vein in trying to access it, and when the infusion finally started, some oxaliplatin got into the nearby tissue in the arm and caused a condition known as extravasation (i.e., tissue necrosis). Even now, more than five years after that incident, the skin on my left arm is a different color and different texture due to the tissue necrosis that had developed during that one extravasation accident. The skin on my left arm looks like lizard or snake skin, while the skin on my right arm looks normal.

Knowing what happened to me, I would recommend that a patient start out with a port from the very beginning. A port needs to be installed only once and if it has been installed professionally it can last for months or years. On the contrary, a remote IV to the lower arm has to be re-installed at each and every infusion, and this could turn out to be a problem

heiders33
Posts: 306
Joined: Sat Nov 04, 2017 11:08 am

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

Postby heiders33 » Tue Jun 05, 2018 5:37 am

I agree, I did my first infusion without a port and it was extremely painful. I think in general we women have smaller veins. I would recommend getting a port - it’s not a big deal and so worth it.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of XEL/radiation
Sep 2017: laparoscopic LAR/loop ileostomy
Oct 2017 - February 2018: XELOX six rounds
Mar 2018: reversal
Apr 2018: CEA 2.1, normal blood counts
May 2018: CT liver spot
Aug 2018: Abnormal PET, CEA 2.4
Sep 2018: robotic and laparoscopic liver resection with HAI pump
Oct 2018: Clear CT and colonoscopy, CEA 1.7, begin six months FUDR and FOLFIRI

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

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

Postby susie0915 » Tue Jun 05, 2018 7:56 am

I was able to do six infusions without a port. Since every 3 weeks, we alternated arms, and even used a vein near my wrist a couple times. It's important to stay hydrated as this helps access the vein, also the nurses would put a warm towel on my arm before putting in the IV. The area would be sore for a couple days after.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Wed Jun 06, 2018 10:37 pm

SpringerSpanielMommy wrote:


Another issue I am embarrassed to bring up here, but am sure many of you have experienced is the radiation treatment has made me only able to use the medium dilator. It is IMPOSSIBLE to get the large one in and if this is my new reality it will mean my husband and I will not be able to have sex. I have let the doctor know and they are going to make me an appointment with gynecology but because my tumor was so low, they said I should only use the medium dilator to keep things as open as possible.
.


This is a hard subject. I don't know anything about a dilator, my radiologist never said anything to me about anything worthwhile. She was such a disappointment. Sex is a challenge due to chemo/radiation induced menopause, and possibly some scarring(less it a little bleeding). My husband is a gem and ood news is that it is possible with some care and patience. It does get easier over time.
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

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

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

Postby SpringerSpanielMommy » Fri Jun 08, 2018 7:23 pm

Thanks so much for the advice and support, I am determined to thrive in the midst of this battle.
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.

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

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

Postby SpringerSpanielMommy » Fri Jun 15, 2018 5:13 pm

I need encouragement. I had asked for a port and my doctor did not feel it would be necessary, it is.

My first chemo. Today did not go as planned. They blew 4 veins and the last one blew within 15 minutes of the 2 hour infusion the 4th one blew. I am highly allergic to valium and the derivatives so I am tentatively scheduled for a port placement on June 22nd if anesthesia is able to coordinate with interventional radiation. My chemo is on hold until this is figured out. Apparently I have ”very small veins” the chemo phlebotomists are very skilled and deal with difficult veins all the time and said they were so sorry this did not go according to plan.

I have always been super easy to stick and have no idea what has happened. Perhaps xeloda damaged my veins? I am nervous about the port because this was such a horrible experience and I ended up sitting in the chemo chair just crying.

I asked what happens if my jugular blows as they try to place the port and they said it will not happen but there are risks involved. I am going to make certain they have an attending DR in the room when it is done because I have no idea what will happen

Being a planner and perfectionist not completing a task reminded me I have no control and am not able to push through. Resting only knowing God is good and all is going according to his plan
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.

SteveNZ
Posts: 142
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

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

Postby SteveNZ » Fri Jun 15, 2018 5:52 pm

Hi,
I am so sorry for all that is happening. I almost cry thinking of your pain and hurt.... wow it is awful.
I cannot be of much medical help but know the one who gave Joshua that bible verse at the bottom of your signature.
The words were for a scared guy about to face what seemed an impossible task.
You aren't alone. As the verse says He is with you.
You are in my prayers
Steve
Aged 56 - I feel really young...
Colo-Rectal Cancer T2 N1 M0
March 2018 - Diagnosis
April-May 2018 Radiation+Chemo then a TIA (Minor Stroke). - Stopped Chemo.
June 2018 - Sitting it out before operation. ....Pretty Miserable- emotions gone weird....?!
*Decided to live to 100 as I will get a telegram from Her Majesty the Queen when 100yrs old. I so, so want one.
Am a Salvation Army chap so I complete 'knee drill' (prayer) to the Commander in Chief often. For myself personally this helps me through.

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Sat Jun 16, 2018 5:41 pm

How scary and awful for you. The port is scary but makes the chemo passable. You can do this!!!!!
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

NHMike
Posts: 1797
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat Jun 16, 2018 6:54 pm

I was a bit afraid of the port but it seemed that everyone else around here got on so I got one too. It's a bit of a pain for a week but you get to where you really don't notice it. The actually surgery was painless for me.
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; 9/8: 1.8; 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
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

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

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

Postby SpringerSpanielMommy » Wed Jun 20, 2018 8:10 pm

I am so appreciative of everyone's kind words, advice and support, and encouragement I get from those who are so far ahead of me on this path. It looks like it is all coming together for Friday. I will be 8 weeks post radiation on July 8th and they have repeatedly said that it is important to start the chemo prior to reaching that date. I am going on Xeloda again 14 days on, starting the day of infusion and then 7 days off. Say a little prayer for me, after the bad experience last week.......

"Good afternoon! I have spoken with the Interventional Radiology department and they have you arriving at 6:30am on Friday, for a port placement with anesthesia at 8:00am. They anticipate this will take approximately 3 hours.

We are actively working on securing an infusion slot for you to receive your first cycle of Oxaliplatin on the same afternoon. I will keep you posted on whether this will be a possibility or not. Have a good afternoon.
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.

retiredteacher
Posts: 95
Joined: Sat Oct 21, 2017 1:34 pm

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

Postby retiredteacher » Wed Jun 20, 2018 10:51 pm

My oncologist suggested I try without a port. First infusion was very painful - for days - so I requested and received the port. Installation was very easy with local and a light general. Mine was tender and maybe a little painful the first week or so, but made the subsequent infusions super easy and comfortable. Biggest pain for me was dealing with the bra strap; moved to the JJill shelf bra tank camisole and everything is working well. The girls need a little more support, but it's the best we can do!
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

boxhill
Posts: 122
Joined: Fri Apr 06, 2018 11:40 am

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

Postby boxhill » Thu Jun 21, 2018 10:16 am

What an awful experience. I'm so sorry.

There's something about the word "jugular" that is just scary, isn't there? Right before the procedure, the surgeon who installed my port said that he would try to put it in the subclavian vein or superior vena cava--I'm not sure which, but I think the subclavian-- And use the jugular if necessary. That was the first time I'd heard the jugular mentioned, and it did freak me out a bit! :)

But he assured me it was routine, and in the event they didn't use the jugular after all.

Hope all goes well for you.
F, 64 at DX CRC Stage IV (or "3 1/2" per Dana Farber consult, LOL)
3/17/18 blockage, emergency surgery, r hemicolectomy
11 of 25 nodes
5 of 5 mesentery nodes, matted
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
Neg CEA, neg BRAF, KRAS G12D, germline mut ATM
dMMR, MSI-H, Neg for Lynch
5/4/18 FOLFOX started
Added Neulasta 6/28/18
7/9/18 CT scans show no masses or enlarged nodes, 2mm indeterminate lung nodule


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