New here...where do I begin?

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seasnail
Posts: 144
Joined: Sat Aug 17, 2013 5:42 pm

New here...where do I begin?

Postby seasnail » Sat Aug 17, 2013 7:35 pm

Hi everyone.

I can't even believe I'm here, but happy to have found this place all at the same time.

Last week my fiance was diagnosed with Stage IV rectal cancer with mets to his liver (3) and a few small inflamed lymph nodes nearby.

He is in his mid fourties, in good shape, and had no symptoms up until a couple of months ago where his bowel movements were inconsistent and he had a bit of bloating/cramping. No appetite issues, weight loss, fatigue, etc. Just diarrhea which made it hard to leave the house. All preliminary blood and stool tests came back normal. It was the surprise of our lives when they even said the word cancer after his colonoscopy, and then that it was Stage IV. We've been together for almost 10 years and are both in complete shock. It's weird to think of our lives just a few weeks ago, where everything was normal and we had plans for marriage, children, and buying our first home. Now we're scared to even think of kids and he is worried that if we get married I will be 'on the hook' financially should anything happen to him. I am still stuck on the diagnosis all together and can't believe there's even the possibility that he won't be around. I don't even want to think of it.

Currently we are scheduled for tests a pet scan and a port placement next week. Then the following week he will begin Folfiri and Avastin. We had a previous family doctor that didn't have a specialty (he did colorectal, breast etc) that we were seeing who wanted to do Foxfox and Avastin but we switched to a cancer center with a better reputation and a doc who work specifically with this and are hoping we made the right choice. I don't know why he wanted to change the meds but how have people done on either of these combos?

Also as it is, he is going through a lot of pain in his rear. I think inside, where the tumor is, and his outer muscles because he's always clenching...he has to go to the bathroom (usually just gas/mucous) like every 15 minutes. He said the only place where it feels good is in water (showers, baths...sometimes with Epsom salt, the lake, whatever). Any suggestions on other relief? Can the doc prescribe stronger pain meds than over-the-counter Tylenol? Home remedies? I know that alcohol also makes him not have that pressure/feeling but I've heard that is worse for the cancer itself (especially mets in the liver).

Finally, anybody have general advice and/or can think of any questions we should be asking our doc between now and then? We've bought Anticancer and are trying to look into all avenues in terms of diets/remedies to assist with the chemo to give us the best chance and for him to feel the best (he'd love to be working during all of this). I know everyone is different with treatments, symptoms, reactions, etc but coming from a place where cancer was the furthest thing from our minds, any and all info is welcome.

Thanks!!
Caregiver to dh
Diagnosed 8/13 stage IV 3 liver mets 1 lobe age 46
8 rds Folfiri/Avastin/5FU 9/13-12/13
Rad 1/14 (28 days) w/ADAPT
Surgery 5/1/14 temp ileo
5/13/14 pathology, complete response in liver
6/14 ADAPT for next 1.5-3 years
7/14 clean scan
9/2/14 ileo reversal
12/14, 2/15, 7/15 clean scans, fingers crossed!

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: New here...where do I begin?

Postby justin case » Sat Aug 17, 2013 8:39 pm

I will only address the pain problems as your doctors seem to be in tune with the protocols. My oncologists had no problem giving pain meds when needed, and to me they always worked even better with warm baths. There will be someone along with more specific information soon.
Regards,
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

rosa01
Posts: 564
Joined: Sat May 19, 2012 1:24 pm
Location: California

Re: New here...where do I begin?

Postby rosa01 » Sat Aug 17, 2013 9:40 pm

Sorry to hear about your fiancé being diagnosed to Stage 4. That sure is scary. Now as of question do a search on our forum and the web and you can come up with a lot of really good question. Make sure he signs at the doctors and hospital that you can talk to the doctors about what is going on. If you read through our forum you will find so many of our members who were married during the Caner treatments. Please do what your heart tells you to do. Its a hard decision but the most important thing is being there for each other. We always say no question is either to personal to ask or to silly. Please let us know how things are going.

Sheila

God Bless
DX 12/11 DH Stg 4 cc age 60
12/20/1 1 lungs mets
2/1/12 started chemo oxe/ava/5-fu
3/12 liver mete fnd
5/12 new chemo irt/Eberix
8/12 lung surg
10/12 irt/Eberix
11/22- 02/2013 NED
02/13 nw right lung met
06/13 2 New liver lesion
06/13 chemo ?

dianne052506
Posts: 1651
Joined: Sun Nov 02, 2008 11:57 pm
Location: North Carolina

Re: New here...where do I begin?

Postby dianne052506 » Sat Aug 17, 2013 10:44 pm

seasnail,
I am so sorry you and your finance are having to face this. The first few weeks are always tough, trying to wrap your head around the diagnosis, going from one doctor's appt to another, trying to learn all the terminology, on top of just feeling lousy or in pain.
Our diagnoses are quite different so I don't have a lot of advice for your finance. I will say that both FOLFOX and FOLFIRI can be used as first line chemo for colorectal cancer. I believe in Europe that most people have FOLFIRI first, while FOLFOX seems to be first line more often in the States. FOLFOX can cause some neuropathy in hands and feet, so I have seen doctors go to FOLFIRI first if the patient has another health issue like diabetes that might be complicated with neuropathy. Asking the onc about his preference would be a good basic question while you are in a get-to-know you stage.

I have noticed over the years that Saturday/Sunday posts don't always get attention right away. If you don't get a good number of responses the first couple of days, reply to your own thread so it will get moved back up to the top again.

I wish you and your finance the best.
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again

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kirac
Posts: 255
Joined: Sun Jun 09, 2013 10:34 pm

Re: New here...where do I begin?

Postby kirac » Sat Aug 17, 2013 11:05 pm

Hi - my husband was diagnosed with stage 3 after our 2nd child was born. Just wanted to let you know that if you want to have kids after treatment, he may need to freeze his sperm. I don't want to add stress, but I just want you to talk to a fertility specialist if you want to have kids later. You should try to find one that knows the effects of chemo and radiation on fertility. The doctors forgot to talk us about this but we were done with kids so it was ok. Just find out your options. I know a good fertility specialist in LA that has studied the effects of cancer, but I have no idea where you are.

My husband didn't really have symptoms either - bathroom issues, yes, a little bleeding, but nothing else. We started juicing to increase our vegetable and fruit intake. Our onc didn't want us taking any supplements during treatment, but eating it was fine. My husband started carrying around a small backpack with emergency underwear and clothes because accidents happen. You will find lots of good posts about how to be more comfortable.

My thoughts are with you.
Last edited by kirac on Sat Aug 17, 2013 11:30 pm, edited 1 time in total.
Husband (Age 36) 1/13 Dx Stage 3B rectal cancer
3/13 Chemoradiation
6/13 Tumor removed, Temp ileo, 1/15 nodes
7/13 Chemo = Oxaliplatin, Xeloda
1/14 Reversal
7/14 NED, CEA 1.8
12/14 CLEAR CT scan! NED

http://kickingasscancer.com/

seasnail
Posts: 144
Joined: Sat Aug 17, 2013 5:42 pm

Re: New here...where do I begin?

Postby seasnail » Sat Aug 17, 2013 11:22 pm

Thank you all so much for your responses!! kirac: we definitely will look into that. It was mentioned in passing by him when we first got the diagnosis, but seemed to slip to the back of the brain since then. I have started researching and using some Microsoft Office tools to start gathering information, adding questions, and pasting in articles that are of interest. I'll be sure to make a note of that to look into in the coming weeks. edited to add: we actually also got a juicer as well. He's been really excited to use it and says he feels a boost of energy after drinking it.

I am slowly searching keywords and reading through threads. Even just writing the thread felt like therapy. We haven't told family yet so it's been kind of rough trying to keep it together and only have each other to lean on. So saying the words "out loud" feels nice. I'll definitely post back next week if it's slow going. I really really appreciate all of your words and thoughts.
Last edited by seasnail on Sun Aug 18, 2013 1:12 am, edited 1 time in total.
Caregiver to dh
Diagnosed 8/13 stage IV 3 liver mets 1 lobe age 46
8 rds Folfiri/Avastin/5FU 9/13-12/13
Rad 1/14 (28 days) w/ADAPT
Surgery 5/1/14 temp ileo
5/13/14 pathology, complete response in liver
6/14 ADAPT for next 1.5-3 years
7/14 clean scan
9/2/14 ileo reversal
12/14, 2/15, 7/15 clean scans, fingers crossed!

llupp
Posts: 75
Joined: Sat Jul 27, 2013 1:14 pm

Re: New here...where do I begin?

Postby llupp » Sat Aug 17, 2013 11:27 pm

So sorry you are having to go thru this. What I found help my husband during chemo I brought a squeezable sport bottle mixed baking soda,salt and water he used it every time he went to the restroom and it kept his mouth sore manageable but it he has a problem don't hesitate to tell the doctor they have a magic mouthwash that work great. I kept fluids in my hubby it seem to help. I took a chemo class for caregivers that his doctor recommended. Keep a positive attitude and use humor to get thru this. My husband will be having surgery Monday to remove the tumor and alas they found another tumor in one in his kidney so at the same time 1/2 his kidney. Our anniversary was Friday and we spent it at the hospital getting his bloodwork and a nice visit with an osteomy nurse to prep us for his temp bag and how to take care of it. When the nurse mention that the stoma will look like a rose bud, he start laughing and said see I was getting a rosé that we will have for 5 months sometimes you will have to laugh as to not to cry. I will keep you in my prayers and feel free to contact me if I can be any help.
Caregiver of hubby
Rectal cancer 4/13
C-scan, Pet-scan 4/13
Kidney cancer 4/13
Port 4/13
Chemo and Radiation 6 weeks
Surgery 8/19

Removed left kidney and rectal tumor temp ilestomy
hospital dehydration and partial stoma block
Chemo to start around 10/15
Ned 03/25/14
Still Ned 03/10/16 Woo Hoo

llupp
Posts: 75
Joined: Sat Jul 27, 2013 1:14 pm

Re: New here...where do I begin?

Postby llupp » Sat Aug 17, 2013 11:33 pm

One thing I forgot that has help greatly. I purchase 2 binders and a date book. One for doctors and test results and paperwork, the other for billing, insurance and receipts. The date book for apps. and a list of his prescriptions.
Caregiver of hubby
Rectal cancer 4/13
C-scan, Pet-scan 4/13
Kidney cancer 4/13
Port 4/13
Chemo and Radiation 6 weeks
Surgery 8/19

Removed left kidney and rectal tumor temp ilestomy
hospital dehydration and partial stoma block
Chemo to start around 10/15
Ned 03/25/14
Still Ned 03/10/16 Woo Hoo

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O Stoma Mia
Posts: 1603
Joined: Sat Jun 22, 2013 6:29 am

Re: New here...where do I begin?

Postby O Stoma Mia » Sun Aug 18, 2013 5:27 am

llupp wrote:... My husband will be having surgery Monday to remove the tumor ...



"llupp" - Our thoughts and prayers will be with you and your husband on Monday, 19th August. We trust that everything will go well. Keep in touch!

User avatar
O Stoma Mia
Posts: 1603
Joined: Sat Jun 22, 2013 6:29 am

Re: New here...where do I begin?

Postby O Stoma Mia » Sun Aug 18, 2013 5:56 am

seasnail wrote:...Currently we are scheduled for tests a pet scan and a port placement next week. Then the following week he will begin Folfiri and Avastin. ...
Finally, anybody have general advice ...?


In addition to the AntiCancer book, I would recommend

"Chemotherapy Survivor Guide: Everything You Need to Know to Get Through Treatment ", by J. McKay and T. Schacher

I have read both of these books twice, from cover to cover.

In addition, prior to starting chemotherapy you could read some of the discussions on Folfiri + Avastin side effects to get an idea of what you will be up against.

http://www.avastin.com/patient/crc/side-effects
http://nellyschemotherapy.blogspot.com/2012/03/what-is-folfiri-chemotherapy.html
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=43224
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=40151
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=33429

Another point: For the up-coming PET scan, be sure to strictly follow the specified diet, fasting, and exercise restrictions in order to avoid false positive results on the scan.

SFLwife
Posts: 121
Joined: Sat May 25, 2013 6:46 pm

Re: New here...where do I begin?

Postby SFLwife » Sun Aug 18, 2013 9:12 am

Seasnail
Am so sorry to hear about your fiancé . We all hsve been where you are at one time and believe me you will find that this site will be your "go to" place for so much now. My husband of 34 years was diagnosed last Oct. My head was spinning for weeks, handling the news, learning what tectal cancer was, trying to take in all the new information, and trying to find out all I can. Your fear is that there is ONE piece of information that I will miss that could give him some relief, or extend his life.
I have read so much and still scour the Internet to find out more all the time. But overall I have learned so much more from ths forum than all my other reading. Anytime I have a question, I first do a search at the top of this forum (from the general forum tab). I guarantee there is at least one discussion on any question you might have. Usually several. And the group is great about responding fairly quickly to questions you post.
There is also a caregivers thread in here.

I wish you the best, and that he responds well to the chemo. Shrinkage is great, but I will take "stable" anyday these days.

Susan
Wife & BFF DH 56 yo. DX 10/12
Chemo and trial
KRAS=wild
Tons of chemo
10-15-13 Gone with peace and much love...
http://bccarrollwood.tributes.com/our_o ... y-96542543


"I get by with a little help from my friends"

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GreenMonkey
Posts: 336
Joined: Wed Jun 12, 2013 5:43 am
Contact:

Re: New here...where do I begin?

Postby GreenMonkey » Sun Aug 18, 2013 10:42 pm

Hi seasnail, I don't have any advice but I wanted to say hi. I was just diagnosed with rectal cancer. I worry about how my husband is digesting all this so it was good to read your words. (not sure if that makes sense). I had terrible pain after internal radiation and was given anti-inflamatory suppositories. I don't know if they helped. Eventually, the pain went away. now I'm feeling pretty normal and am facing surgery september 10th. not happy about any of this.
RC - T3NXMX depth of invasion 3mm - diagnosed 5/26/13 age 53
High Dose, Internal Radiation at Johns Hopkins resulted in a PCR
LAR 9/10/13 - 0-26 nodes. CEA 1.9 post surgery
XELOX started 10/21/13(8 rounds)
11/14 NED
greenmonkeytales.blogspot.com

kiwiinoz
Posts: 1156
Joined: Thu Jan 03, 2013 11:44 pm

Re: New here...where do I begin?

Postby kiwiinoz » Sun Aug 18, 2013 11:34 pm

Hi Sea Snail
I was diagnosed with Rectal Cancer at 39 and I have found that there was a big mental adjustment required to accept that I have cancer, and that it wasn't just going to be a bill I could take to make it go away. Once I got over that and finally met my oncologist I could get on with things as I was on a treatment plan.

I have found that eating healthy, keeping really hydrated, exercising and trying to enjoy the non cancer aspects of my life have helped.

Like most people on this site I just take things one day at a time and it makes it a lot more bearable.

Good luck and get as much info as you can

Kiwi
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 22 May 2019
Port Out 26 March 2015

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O Stoma Mia
Posts: 1603
Joined: Sat Jun 22, 2013 6:29 am

Re: New here...where do I begin?

Postby O Stoma Mia » Sun Aug 18, 2013 11:39 pm

seasnail wrote:...
Finally, anybody ... can think of any questions we should be asking our doc between now and then?


You can find a lot of sample questions to ask your doctor by doing a Google search with the keywords, "questions to ask the doctor about colon cancer".

You can then download or cut-and-paste relevant questions from these documents and then add some questions of your own.

One question I always have is: "What do I do if I have a problem at home and it is the week-end and the only place open at the hospital is the Emergency Room and nobody there can answer my question?"

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GreenMonkey
Posts: 336
Joined: Wed Jun 12, 2013 5:43 am
Contact:

Re: New here...where do I begin?

Postby GreenMonkey » Mon Aug 19, 2013 10:18 am

thank you O Stoma Mia! I forget how user friendly google is :)
RC - T3NXMX depth of invasion 3mm - diagnosed 5/26/13 age 53
High Dose, Internal Radiation at Johns Hopkins resulted in a PCR
LAR 9/10/13 - 0-26 nodes. CEA 1.9 post surgery
XELOX started 10/21/13(8 rounds)
11/14 NED
greenmonkeytales.blogspot.com


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