Hi there :)

Please feel free to read, share your thoughts, your stories and connect with others!
Freddy87
Posts: 16
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Hi there :)

Postby Freddy87 » Tue Feb 14, 2017 6:20 pm

Hello there,

My name is Ana and i'm 29. Rectal Cancer discovered after the Hemorrhoids that haunted me after the birth of my daughter just wouldn't get any better.

The rest you can read from my signature. I've told my story to 20 different people by now and don't have the energy to write extensively about it. That said, this Signature thing is a pretty damn good idea.

Just wanted to say hi to anyone out there who is battling the same war as we. After a very positive reaction to my diagnosis (at first I thought I was going to die within a couple of months and now i'm hoping that my Freddy - that's my unwanted guests name - behaves and I can at least stay with my daughter until we can have a decent intelectual conversation, to teach her how to be happy with the little details of life), i'm starting to get a little under the weather with my intensive life situation, loneliness and with the wonders that radiation is doing with my button at the moment.

I know that Cancer sucks. I'm a Nurse and worked in Oncology and Palliative Care for 4 years. I have an idea about what's coming at us - alltough I guess until you experience it yourself, you never really know. If I'm alive when my daughter reaches adulthood I will die gladly then so happy! But until then.. With Cancer or without it - I need to stay in this world until she can fend for herself.

I'm here looking for positive people in similar situations who can share ideas and recommendations about treatments and off label medications. Young people with positive attitude to exchange ideas and sarcastic humor would be a refreshing deal of help :)

And please, I know it sounds arrogant - but don't tell me you're sorry. That's the main reason I still haven't been able to talk to most of my relatives (have to rethink it maybe after the genetic testing). Shits happens and it's OK. I need to move on from feeling sorry to other proactive things.

That said..

Thank you for listening and for all your refreshing thoughts (Ps: since I've learned German my English is upside down.. so I'm sorry if I'm making up new words as I go :P)

Ana
29 yo. Mum (18 Mo) & Wife. Working & Studying.

12/2016: Dx Rectum AdenoCa G2 5 cm ab ano. CEA 4.3
01/2017: MRI/CT Lymph Nodes Metastases: T3N1M0
01/2017: Spot on the Liver: Ultrasound says it's a Cyst
01/2017: RAS Wildtyp
01 - 03/2017: 28 RTX und CHT 2500 mg/d Capecitabine
04/2017: CEA 1.1

8) Planed:
05/2017: TAMIS/LAR
06/2017: 8 Rounds CHT with Capox :?:

AussieAssCancer
Posts: 194
Joined: Sat May 21, 2016 10:16 am

Re: Hi there :)

Postby AussieAssCancer » Tue Feb 14, 2017 7:09 pm

Welcome Ana (not so much Freddy)

You'll find that everyone here is wonderful, and who have found themselves in your boat.

You'll see from my signature that I had Stage 3 rectal cancer as well and had a complete pathological response. My two lots of scans and bloods have come back normal and I'm scheduled to have my ileostomy reversed in 2 days.

Everyone will help you out along the way with questions you may have, be it from neuropathy, what to expect following surgery, living with a Stoma and more.

All the very best,

Geoff
Dx Oct '15 w/ Stage 3c RC
Nov '15 - Jan '16: 3x FOLFOX and 5wks Chemoradiation w/ Xeloda
March '16: ULAR w/ temp ileostomy
Complete pathological response incl 0/12 nodes
April '16: Clear CT (NED)
May - Aug '16: 9x FOLFOX (dropped Oxaliplatin for final Rd due to neuropathy)
Dec '16: Clear CT (NED)
Feb '17: Ileostomy reversal scheduled

Blog: kickingrectalcancerintheassblog
https://kickingrectalcancerintheassblog.wordpress.com/

Freddy87
Posts: 16
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Re: Hi there :)

Postby Freddy87 » Wed Feb 15, 2017 6:42 am

Dear Geoff,

Thank you so much for your reply.

Since yesterday I'm reading your blog and it's been the first time I could really laught out loud about this whole deal. You don't know what good it has been for my spirit right now, to be able to read about your experience, strengths and weaknesses, good and bad days.

Everything you wrote about your family and about your daughter resonates inside of my head and I couldn't possibly express it better.

That said, I'm really happy for you that you belong to the lucky 6-20% that achieved a complete response to radiochemotherapy. Maybe in a couple of months I'll be able to join you in the numbers, although realisticly speaking I would be terrified if I were to achieve a downgrading to a Stadium I or II.

The surgery scares the bananas out of me, but what comes afterwards (ileostomie aka new bowl habits aka possibility of LARS or Incontinence, not to speak of chemo brain, painfully sex life after pelvic radiation and constant fear of recurrence) scares me even more.

But I'll take it from you and take one day at a time and hope for the best. I will be following your blog and activity in the Forum attentively :)

I wish you all the best luck for your surgery tomorrow and I hope that you and your new bowl get along just well,

Ana
29 yo. Mum (18 Mo) & Wife. Working & Studying.

12/2016: Dx Rectum AdenoCa G2 5 cm ab ano. CEA 4.3
01/2017: MRI/CT Lymph Nodes Metastases: T3N1M0
01/2017: Spot on the Liver: Ultrasound says it's a Cyst
01/2017: RAS Wildtyp
01 - 03/2017: 28 RTX und CHT 2500 mg/d Capecitabine
04/2017: CEA 1.1

8) Planed:
05/2017: TAMIS/LAR
06/2017: 8 Rounds CHT with Capox :?:

Nelbel
Posts: 36
Joined: Thu Nov 17, 2016 11:02 pm

Re: Hi there :)

Postby Nelbel » Thu Feb 16, 2017 1:21 pm

Welcome.

I was in your same place a year ago. I was diagnosed w stage 3 rectal cancer on 12/22/15. I am now finished with treatment and working on getting my body and spirit back. It was a long year but I got through it and am happy to have 2016 behind me.

I hope you're treatment goes smoothly. Please don't ever hesitate to reach out with any questions...
DX Dec 2015 at age 41
Stage 3 RC
Radiation and xeloda
May 2016 LAR and temp ileo
8 rounds chemo
Nov 2016 ileo reversed!

Freddy87
Posts: 16
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Re: Hi there :)

Postby Freddy87 » Wed Mar 01, 2017 4:06 pm

Dear Nelbel,

Thank you for your welcoming tone and for your example, that brings me the hope that I desperately need at this moment - hope that I will too, will be able to survive the treatment, be able to survive cancer and be able to survive and enjoy my life afterwards.

I am now reaching the end of the first stage of treatment and after 3 more Sessions I will be done with Radiochemotherapie.

The things with Xeloda are going pretty well I think. Apart from raw skin on my hands and feeling sick a couple a days a week I am really relieved with the absence of serious side effects.
Simultaneously I am also afraid that the lack of side effects could mean something less pleasant - maybe is the chemo not working as it should on me? That's only wild guessing and I think I will have to wait and see what happens to my Freddy in a couple of weeks.

RADIOTHERAPIE is my major problem at the moment. When I am lying there in that room, with that frigging machine circling around my body, all I can think about is the colateral damage that is coming at me.. I get so nervous it's had to stay still sometimes...
I could bomb the goddamn thing. But I guess it wouldn't make it any better would it?

I have to survive this thing with my flared up hemorrhoids and wish that I never again in my life need to enter a Radiotherapie Room again!

I'm getting auch very insecure about all the information I read about nutrition and supplements on Dr. Gogole. I ate pretty healthy and before my daughter was born I practiced physical activity 2-4 hours week (Running and Gym). I don't have any risk factors and I'm 29 years old!

I've spoken to my Surgeon and Oncologist and they aren't very receptive to Cimetidine or other drugs alike. They say standard medicine delivers the best results and every intervention brings a risk - so why try things that are not standard of care when we still have a good chance?

Oh well. Decisions decisions and dealing with all this uncertainty.... piece of work I tell ya.
I get it why is called "fight" against cancer.

So much for an Update on my situation.
Thank you for listening and stay strong!

Best wishes,

Ana
29 yo. Mum (18 Mo) & Wife. Working & Studying.

12/2016: Dx Rectum AdenoCa G2 5 cm ab ano. CEA 4.3
01/2017: MRI/CT Lymph Nodes Metastases: T3N1M0
01/2017: Spot on the Liver: Ultrasound says it's a Cyst
01/2017: RAS Wildtyp
01 - 03/2017: 28 RTX und CHT 2500 mg/d Capecitabine
04/2017: CEA 1.1

8) Planed:
05/2017: TAMIS/LAR
06/2017: 8 Rounds CHT with Capox :?:

User avatar
Maggie Nell
Posts: 530
Joined: Wed May 27, 2015 1:57 am
Facebook Username: maggie nell
Location: Melbourne, Australia

Re: Hi there :)

Postby Maggie Nell » Thu Mar 02, 2017 10:57 am

Freddy87 wrote:
RADIOTHERAPIE is my major problem at the moment. When I am lying there in that room, with that frigging machine circling around my body, all I can think about is the colateral damage that is coming at me.. I get so nervous it's had to stay still sometimes...
I could bomb the goddamn thing. But I guess it wouldn't make it any better would it?

Ana


Hey Ana & future ex-Freddy87,

So doesn't help when you have a medical background, does it, and you're "ahead of the curve" (so to speak) with
anticipating what's next....and :shock: ing yourself.

Seems like you're going to need some help with the imagery.....this could do it. 8)

Image


https://www.youtube.com/watch?v=J04gTJvynjg

Or not.
DX April 2015, @ 54
35mm poorly diff. tumour found upon emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
deranged LFTs April 2017

Freddy87
Posts: 16
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Re: Hi there :)

Postby Freddy87 » Fri Mar 03, 2017 7:55 am

AHAHAHAHA!

Thank you for the laugh :)

I think we all would be better of with an "Excessive Maschine" as with a darn Linear accelerator ..

But it would be no fun, would it?
Having Cancer without moments to panic about it... where's the fun in THAT? :!:
29 yo. Mum (18 Mo) & Wife. Working & Studying.

12/2016: Dx Rectum AdenoCa G2 5 cm ab ano. CEA 4.3
01/2017: MRI/CT Lymph Nodes Metastases: T3N1M0
01/2017: Spot on the Liver: Ultrasound says it's a Cyst
01/2017: RAS Wildtyp
01 - 03/2017: 28 RTX und CHT 2500 mg/d Capecitabine
04/2017: CEA 1.1

8) Planed:
05/2017: TAMIS/LAR
06/2017: 8 Rounds CHT with Capox :?:

Nelbel
Posts: 36
Joined: Thu Nov 17, 2016 11:02 pm

Re: Hi there :)

Postby Nelbel » Fri Mar 03, 2017 11:18 am

Hi Ana,

I'm sorry your having a rough time w radiation :( Ugh, fortunately I can only vaguely recall how horrific it was. You're so close, one more by the time you read this!! The week after will by far be the worst. One of my sister's came into town to help me w my kids as my husband was traveling that week and she said she now knows what I will look like as an old lady :? As for the chemo side effects, what you are experiencing is completely normal! I only had periodic nausea (and it was so minor that I never took anything for it). I coated my hands and feet w Bag Balm most nights so I only had slight redening of the skin. My tumor was pretty much gone after this first treatment round! You will get better but beware, you will get a little bad again. For me, sitz baths were wonderful and the only ointment that helped me was Anusol (it's no longer sold in the states but I was able to order from Canada thanks to Amazon). I finished radiation on March 4 and I still felt like I was passing broken glass come surgery at the beginning of May - that at least made the whole idea of a bag a little more welcome.

Surgery and chemo will be a breeze after going through radiation (and mine was an open surgery). By far toughest part...

Do not worry about nutrition (at least for the next year). I was 41, super fit and healthy and ate really well. Did not fit the profile at all. It's bizarre. I really wonder what percent of us younger folk are normal weight, active and healthy eaters. While it sucks being 41 and getting this, you are way too young and it makes me so sad to hear stories of twenty somethings going through this. I'm at least finished having kids and likely within 10 years of menopause anyway. Please start talking to your docs know about what you can do to help your lady parts recover from the radiation damage!! Really, I wish I did something sooner...
DX Dec 2015 at age 41
Stage 3 RC
Radiation and xeloda
May 2016 LAR and temp ileo
8 rounds chemo
Nov 2016 ileo reversed!

Freddy87
Posts: 16
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Re: Hi there :)

Postby Freddy87 » Fri Apr 14, 2017 10:52 pm

Dear Nelbel, dear Colonclub mates,

It took me this long to have the capacity to post any updates this far. I've been a silent reader in the last weeks and I'm moving slowly to stage 2 of my treatment plan. Surgery will be on May 10th! Yay!

Radiotherapy was horrific. No, wait, horrific doesn't even cut it but I can't find another word to describe the last week on radiation and the two weeks that followed. Had not I had a daughter that still needs me for everything from sleeping to eating and playing and being happy, I would have been committed to a burned unit in a central hospital.

I had a Degree 3 burn in my buttock and vagina. Couldn't even walk straight or sit down. My hemorrhoids exploded from the level of inflammation and even my Surgeon was shocked when she saw me. And all of this combined of course with lovely diarrhea. Mount Vesuvius like, If you get the picture.

Nonetheless I was alone with my daughter so I had to pick her up from the kindergarten, and come running back home. Clean the Appartement and cook diner. And hey! Everyone still needs clean clothes, so guess what. Plus spending the afternoon alone with an energetic toddler when you can barely stand. In those days I found out HOW MUCH I love my daughter. The love of a parent is a unique force of strength I tell ya.

I would try my best not to cry my heart out in front of her when I needed to go to the toilet and we played and went to the park and tried to keep everything as normal as possible. The moments when I would sing for her instead of screaming during my CATASTROPHIC BM are forever imprinted in my Soul. Sometimes she would just stay there staring at me for a moment, would kiss me and go play in front of the TV for a while. God bless TV by the way xD on those days it was a live saver.

I don't know why I had such a reaction to radiation. I have a darker skin tone and I experimented with different ointments during therapy/ some of which included zinc oxide. I would make sure I was clean before each session, but you can't possible exclude microscopic sediment in the area during treatment. Maybe my Radiooncologist was just super motivated to see me cancer free and nuked every cell out of me. I don't know.. but I hope I do not have to get through this again.

My hemorrhoids also made everything worse. And after laboring during 19 hours without pain medication I can tell you that I had never felt this sort of pain in my life.
But that has lasted for this three weeks, was definitely a life changing situation, but now is over. Fortunately. Everything in this life occasionally ends.

Now I am getting ready for my surgery. I'm exercising and resting as much as I can. I am taking care of my vagina as well as good as I can (thank Jaynee for your Emails! They were a wake up call!). I am taking MCP, PSK, Cimetidin, Curcumin and Vitamins just for the kicks. I already have a couple of samples and reading material from Coloplast (still waiting on Hollister and ConvaTec). And I'm wondering what decision to do next.

Lately it has been very present in my mind that maybe a LAR with a permanent colostomy could the best decision for me, personally.
Maybe I'm traumatised from my recent experiences. :roll:
My bowel is suffering from radiation still and I wonder if I ever will be back to normal, even with a reversal done properly. I want my freedom and quality of life back. And the idea of a colostomy is much better for me as the idea of LAR Syndrom or spending each day 3 to 4 hours at the loo.

I will have a chance to talk about this with my Surgeon before the surgery. I know she will recommend to give it a try with the reversal and if that doesn't cut it then go to a permanent colostomy. But I don't want to risk to have 3 surgeries instead of 1 and to have excruciating months dealing with possible pain and frequent bowl movements. And I don't want to live on medication for bowl regulation for the rest of my life. Since the beginning that I've dreaded more ending up with LARS that with an Ostomy.

I would rather get it over with with one shot. Cancer out, perm colostomy - and get back to a pain free and movement free life. And do not have to wonder everytime I want to go outside with my daughter or if someone is coming over how much time I have left before the next "urge".

To finish, I just would like to talk about my husband. This has been an ordeal for him and I can't even phantom what he felt like on those days, when he had to leave me alone at home to get to work. At night, he would sit on the door of the bathroom and hear my crying. Or be with me when I showered because he was afraid I collapsed.
He would take care of his daughter with energy and a smile, cook diner at 21.00 when I couldn't and he would suffer every moment when he was not present during those days.

Not once I heard this man cursing or complaining about anything. Always up for the fight and ready to accompanying me through the way. I've always knew, but unfortunately we had now had the chance to really demonstrate the truthfulness of our vows to each other: He is here for me. He's my pillar. My companion. He and my daughter keep me going and let me aim for dreams of our future together.

Because today, after an initial period of despair and fear, and although I am still AFRAID, I know it.
I can feel it in my gut (literally).

I WILL BEAT THE SHIP OUT OF THIS CANCER.

I will prevail. I WILL.
I know it.

Thank you for listening. Thank you for this forum that has helped me so much during those days.


Stay strong, enjoy life, even (specially) on the bad days.

Love,
Ana
29 yo. Mum (18 Mo) & Wife. Working & Studying.

12/2016: Dx Rectum AdenoCa G2 5 cm ab ano. CEA 4.3
01/2017: MRI/CT Lymph Nodes Metastases: T3N1M0
01/2017: Spot on the Liver: Ultrasound says it's a Cyst
01/2017: RAS Wildtyp
01 - 03/2017: 28 RTX und CHT 2500 mg/d Capecitabine
04/2017: CEA 1.1

8) Planed:
05/2017: TAMIS/LAR
06/2017: 8 Rounds CHT with Capox :?:

DarknessEmbraced
Posts: 2527
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Hi there :)

Postby DarknessEmbraced » Sat Apr 15, 2017 12:40 pm

Thanks for the update! I'm sorry you went through so much during chemo and radiation!*hugs* I'm glad your husband was so supportive. Yes you will beat cancer! :) I hope your surgery goes well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/2016
NED 11/10/16


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: ACPdiddy and 42 guests