Just diagnosed and trying to keep from freaking out

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lgoulet
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Joined: Thu Sep 15, 2016 8:55 am

Just diagnosed and trying to keep from freaking out

Postby lgoulet » Thu Sep 15, 2016 9:30 am

Hi all, I came here for information from those who would know best. Forgive me if I may say the wrong things. I'm trying to balance the flood of emotions and as you all know thats pretty hard to do.

My story- I had a rupture appendix(it died a hero) removed on 8-16-16. underneath it was found a perforated tumor. One polyp was also found in my colon. All of that was removed and resection was successful, no colostomy bag needed. One more polyp was found in the omentum (sp) and all of that was removed. A chest CT scan was clear. In fact my abdominal CT scan did not show the cancer at all. If my appendix had not ruptured I would never have known. I was told I am stage 4 colon cancer. I'm 53 and am one of those annoying people who has never had a health issue. My Powerport was implanted yesterday and chemo class is on Monday with my first dose of FOLFOX on Tuesday. I have been told I will have some sort of pump that i will be bringing home. It's just my wife and I no kids and due to her health I am the sole provider. I have to keep my job.

I have decided to start chemo now even though my doctor said I could wait until something showed up on a scan that could be used to better judge if chemo was working or not. Both he and I do not want to wait. I am confused about how progress will be tracked if there are no visible tumors to observe. I have know idea what to expect from any of this and have been told chemo will be ongoing for as long as I'm ongoing. I'm sorry for the slight ramble, I just am at a total loss right know and needed to say something to someone.
Thanks for listining and good luck to everyone here.

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ktwmn
Posts: 350
Joined: Tue Aug 02, 2011 9:41 am

Re: Just diagnosed and trying to keep from freaking out

Postby ktwmn » Thu Sep 15, 2016 12:06 pm

Hey there,

First of all, welcome to the club nobody wants to join!

Your initial emotions--bewilderment, fear, uncertainty--are all overwhelming and "normal" as you go to appointments, get scans, and discuss treatment options. Once you start treatment you get into a routine and things settle down.

It sounds like you made a good decision with your onc. As a Stage IV patient following the protocol you describe is correct (12 txs of folfox).

There is lots of great advice on this forum about all the topics you address: staging; chemo (folfox), scans, etc. If you type in key words about your specific queries you can read through what others have written.
Dx 7/11, Stage IIIc CC
12 txs Folfox 8/2011-2/2012
MSS, KRAS-mut G12D
NED until 3/2015, mets to liver and peritoneum
April-December 2015: 15 txs folfiri+avastin
Liver mets resolved; pelvic met remains
January-May 2016: folfox+avastin; allergic rxn to oxi
June-August 2016: 5FU+avastin
October 2016: looking into immuno trial
January 2017: maintenance chemo xeloda + avastin

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Just diagnosed and trying to keep from freaking out

Postby DarknessEmbraced » Thu Sep 15, 2016 12:23 pm

Welcome to the board and sorry for the reason you are here. When first diagnosed you feel like the ground has fallen out from underneath your feet. Your fear and uncertainty are completely normal. I hope that your chemo goes well!*hugs* I never had chemo so I can't answer any questions regarding it but I know there are others who will be able to answer.*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 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

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mypinkheaven
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Re: Just diagnosed and trying to keep from freaking out

Postby mypinkheaven » Thu Sep 15, 2016 12:35 pm

lgoulet wrote:told chemo will be ongoing for as long as I'm ongoing.


Did your oncologist explain his/her rationale behind always being on chemo rather than doing 12 sessions and then monitoring with scans?
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

radnyc
Posts: 446
Joined: Tue Apr 06, 2010 6:32 pm

Re: Just diagnosed and trying to keep from freaking out

Postby radnyc » Thu Sep 15, 2016 12:35 pm

Hi, I know how difficult it is to understand all of this at the beginning, so try to relax and breath for a bit. As your cancer spread to the omentum the biggest concern would be that it may show up elsewhere in the abdomen at some point. It's very positive that they were able to remove any visible cancer and I agree that starting Folfox soon is the best way to go. But, just to be proactive I would start looking into HIPEC surgery as this would be the best way to go if there is more cancer in the future. These are complex surgeries and treatments I hope you're being seeing at a good, large hospital, preferable one that is a NCI designated cancer center, there are several all over the country. Here's the link: https://www.cancer.gov/research/nci-role/cancer-centers.

In the meantime I would be taking care of myself as much as possible, mind and body. Eat healthy, exercise more if possible daily, supplements: Vit D, Milk Thistle, coriolus versicolor mushrooms, look these up online, not that hard to find. If you smoke or drink, I would stop. You're body is about to be pumped with very toxic stuff, don't add to the stress by smoking or drinking alcohol. It's a tough challenge, keep up your spirits and take care.

Al
DX Jan 2010, at age 47
Feb - colon resection - 2/17 nodes positive
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April 2011
HAI Pump removed Dec 2015

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BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Just diagnosed and trying to keep from freaking out

Postby BeansMama » Thu Sep 15, 2016 12:47 pm

Hi and welcome,

So sorry you are here, but glad you found us.

Many of us stage IV patients continue to work through treatment. I had to stop due to side effects and the medication I take to control my pain. My company does not allow you to work on pain meds - I work with finances and reporting so it is understandable.

It is normal to feel like your world has just fallen apart. As previous posters have said, you will find a routine that makes this your new normal for a while.

I also am curious about the open ended treatment schedule for you. If you have no detectable active diseases I would think they would stop at 12 rounds. Personally I am still going (currently hooked up to my pump and working on round 16) because I still have active disease. That is something you may want to clear up with your onc.

I will add you to my prayer list.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

MrPleistocene
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Facebook Username: vinson.jim
Location: San Diego, CA

Re: Just diagnosed and trying to keep from freaking out

Postby MrPleistocene » Thu Sep 15, 2016 2:30 pm

Most health systems will have a messaging system, mychart or the like. Its effectiveness varies on the system and the specific Dr., but I would start giving it a go. Chances are your oncologist's NP will be looking through these and be able to answer most questions quickly, or pass it directly up the chain. From your post I didn't get that chemo was open ended, just that you will have a chemo pump you take home, usually for a few days. They will go over the protocol, as it might be a little different each place.

Generally, on infusion day, you go in and they hook you up to an infusion pump, sometimes give you an extra little push of an agent. You will sit there for a couple hours while you get the oxy, maybe leucovorin or other things ordered by the onc. Then you get a small battery powered pump that will go into your port. This will run for a couple of days. The tube is under your shirt. It just looks like you are carrying a small camera bag. At the end of the allotted time, the pump is taken off. I did this back at infusion, but I know some people do it themselves (or their brave spouses do it, more accurately).

The primary discussion, I would start with your doctor is what is the purpose of the treatment. My guess is, this will make you feel much better moving forward. I was Stage 3, and I know there is an enormous difference between the two. However, even within Stage IV, there are many differences.

So, ask the Dr., what will the chemo accomplish? After chemo, what are we hoping to see? (*Honestly, I wouldn't recommend these questions to everyone, but your case is a bit different*)

Depending on your personality, you might want to really get nuts and bolts, but I think, in your case, just getting a feeling from the Dr.'s side what their perspective is will give you at least a sliver of peace.

If you feel yourself anxiously churning and being seduced by the never ending torture of Dr. Google, another place to look is at administrative stuff. With an official Stage IV diagnosis, you could have quick short and long term options through Social Security Disability Insurance. I wrote it out because this is insurance. A system you have been paying for in case you have a serious health event. Many people are able to keep working and working helps them thrive through treatment. Just in case, know that there will be options if you need a few weeks/months off.

There is no splitting hairs; This is serious. As you noted, much less serious than it would have been if it weren't discovered until later. Be grateful you have begun. Lean on this board. Write your doctors, especially the oncologists. Any good oncologist likes to hear from their patients.
DX 11/09 RC Stage IIIb
12/09 Chemorad w/Folfox
Surgery 4/10 LAR, Removed Seminal Vesicles
Clean Margins, T3N2M0, 4/19 Nodes
FOLFOX 6/10-11/10
6/10, 10/10, 1/11 Clean Scans, Normal CEA
12/10 Bi-Nephrostomy
12/10-2/11 HBOT
2/11 Reversal

lgoulet
Posts: 3
Joined: Thu Sep 15, 2016 8:55 am

Re: Just diagnosed and trying to keep from freaking out

Postby lgoulet » Thu Sep 15, 2016 5:55 pm

Thank you everyone. I will take all of your opinions and advice to heart. My Oncologist seems more like he cares about your health then he cares about selling meds for big pharma. He has mentioned that he has no problem passing me onto different doctors if they have a more suitable program. I like Shenandoah Oncology, have a good rep and seem very professional.

fumaros
Posts: 273
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
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Re: Just diagnosed and trying to keep from freaking out

Postby fumaros » Thu Sep 15, 2016 7:47 pm

It is always sad to get this diagnosis. The flood of emotions is part of this journey.

I think it was very wise of you to start chemo right away, as you would require chemo anyway and waiting for tumors to show up just sounds awful.

A general question, isn't Avastin with FOLFOX supposed to be the standard treatment for stage IV, not just FOLFOX? Maybe Avastin isn't in Igoulet's treatment plan because tumours are absent.

I hope and pray for good results and clear scans for you.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

WarriorSpouse
Posts: 220
Joined: Tue Aug 16, 2016 9:02 pm

Re: Just diagnosed and trying to keep from freaking out

Postby WarriorSpouse » Thu Sep 15, 2016 8:33 pm

I agree with what everyone is telling you so far. You appear to have a steady mind and everything you are experiencing is normal. I would also ask your oncologist about Avastin too, along with the FolFox (5FU) program. As you learn how to navigate this blog you can use search terms associated with your prognosis under the "Quick Links" tab. I find this function the easiest way to get historical information concerning what is relevant to my wife's specific cancer and treatment circumstances.

In a weird way I also believe by being initially diagnosed as Stage IV, your Oncologist can be aggressive in your treatment instead of waiting and watching. Being proactive has benefits. You may want to provide some information in your footer signature as to your age and general geographic location. Major cancer centers are worth the ride for second opinions and plans of action, even if they are carried out at a local cancer center closer to your home.

I sense your wit and sense of humor and these will be well served in keeping up morale and mental toughness. You are on the right path here as everyone is very supportive and there is lots to learn from other's similar experiences.

Good luck in you journey forward!
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

Nik Colon

Re: Just diagnosed and trying to keep from freaking out

Postby Nik Colon » Fri Sep 16, 2016 12:12 am

I too am wondering why they would keep you on chemo indefinitely since none is visible atm. Adjuvant chemo is normal, but not forever unless there is visible cancer. I would question this. Best wishes

Mattie
Posts: 76
Joined: Fri Mar 07, 2014 1:06 am

Re: Just diagnosed and trying to keep from freaking out

Postby Mattie » Fri Sep 16, 2016 4:17 pm

Hang in there Lgoulet. I know it's shocking and hard at first. Stage IV is a scary diagnosis, but it doesn't mean the end is looming either. ONce you get in and start doing something about the disease, you will feel better.

I worked throughout all my chemo (and I'm still working) with no problems. Everyone is different in how they react to it. I'm coming up on 7 years since diagnosis and my life hasn't changed much from when I was first diagnosed.

Good luck to you. Remember there are a ton of new treatments and trials being worked on. New things coming out all the time....

Best to you,

Sue
4/10 debulk surgery, DX stage IVb, 49yo
5/10-11/11 Folfox, then Xeloda/Avastin
4/13 Resect liver met + pelvic node, 20+ Rad treatments
7/14 SBRT 15 mm Liver & node
12/14 SBRT 8 mm Liver met
3/16 4-5 pelvic nodes, Xeloda/Avastin again
12/16 NED, maintaining Xeloda/Avastin
8/17 NED Dropping Xeloda. Avastin only.
3/21 NED Avastin only
10/21 Pausing Avastin Proteinuria/BP complications
12/21 Resect 4.4 x 3.6 cm lower abdominal met

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: Just diagnosed and trying to keep from freaking out

Postby rp1954 » Sat Sep 17, 2016 9:21 am

Sorry you need to be here. Since you appear to be an early stage IV, there may be several options beyond standard that have been discussed here before. What your doctor may be trying to do is beat down possible micromets, potential lymph node spread, and possible residual disease. They may see hints in your data, or have an abundance of caution for your history.

You may find some links in previous posts informative.

My view is that better bloodwork before surgery or chemo can be critically helpful. Although we monitor more markers that keep us off the rocks, the most important early ones were CEA, CA199, LDH, ESR, hsCRP (or CRP) and 25-hydroxy vitamin D (commonly, stage IV'ers have gross vitamin D deficiency). I've spoken out before that even more blood tests in baselines can be useful. The extra bloodwork has been a lifesaver for us, financially and medically.

I've seen two basic non-standard backbones for this situation that can yield more functionality and perhaps better OS. Depending on your blood work now and in the future, there have been some successes with xeloda + celebrex, and with CA19-9 targeted cimetidine with oral chemo, along with more mild adjuncts, with higher quality of life and unusually high OS.

Closer to the usual chemo, some Folfox and Folfiri patients have found relief and higher quality of life with extended supplement regimes and/or IV vitamin C from alternative MD or ND sources.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

KElizabeth
Posts: 400
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: Just diagnosed and trying to keep from freaking out

Postby KElizabeth » Sat Sep 17, 2016 10:28 am

I don't have anything to add, but hang in there!
We're all here to give our support or just lto let you vent.
Hugs!

Elizabeth
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

Brunolove
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Facebook Username: Carola

Re: Just diagnosed and trying to keep from freaking out

Postby Brunolove » Sat Sep 17, 2016 11:05 am

Hi everybody,

I am new on this forum and thought it would be interesting for all of you to read about my experience with anal cancer.

I was diagnosed September 2015 with Stage II squamous cell carcenoma. Went straight into Chemoradiation for a month. All went well till the last week. I got very badly burned and needed to go to hospital with heavy morphine. I was just very unlucky that that happened to me.

My advice to you all, get some hormonal cream for the Vagina whilst having treatment it will protect you. This is what I learned from my Gynecologist. He said that when having radiation for ovarian cancer the hormonal cream is used. He also said that the Oncologist treating rectal/anal cancer is not aware of this. Though the rectum is very close to the vagina.

The good news is the cancer had gone.

Carola


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