Just diagnosed and hopeless

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TXLiz
Posts: 249
Joined: Thu Sep 22, 2016 3:31 pm

Just diagnosed and hopeless

Postby TXLiz » Thu Sep 22, 2016 3:49 pm

Sorry for being such a baby.

On August 19, 2016, I started vomiting yellow bile at 5 am. I thought I had food poisoning. At 6 pm the vomiting had intensified. ER, CT, obstructed bowel, lemon sized tumor. Right colectomy. Staged at 3 B with 2 out of 15 lymph nodes positive, M0. CT of lungs clear.

At home and had first onc appt 14 Sep 2016. Onc ordered PET from skull to mid thigh, which I had yesterday. Don't know results. Was supposed to have first chemo yesterday, but don't have port yet. Onc's office is slow and seems disorganized and it's driving me mad. I live in south Texas and have appt at MD Anderson 5 October, thinking of just getting care there.

I am anemic still and have a platelet count of approx 668.
Casually perusing medical articles about how tumor cells use high platelets counts to move about and find new homes in distant organs is terrifying me.

Any and all advice please. I have been lurking here everyday and read most threads and advice and appreciate the wisdom here. BTW, I am a 46 year old mom to a 22 year old daughter in nursing school, 20 year old and 19 year old sons.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
MSI-high
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: Just diagnosed and hopeless

Postby juliej » Thu Sep 22, 2016 7:09 pm

Hi, TXLiz!

First of all, you're aren't being a baby. I felt gutted after they told me the bad news. I drove home in a fog and couldn't stop crying. The good news is that they found and removed the tumor before it metastasized. That is an amazing victory in itself! It's good you're getting a port. I would recommend a PowerPort if you have a choice. It can be used for CT scans in addition to chemo so that's a nice plus. For chemo, you most likely will get either Folfox (5-FU, leucovorin, and oxaliplatin) or Xelox (capecitabine and oxaliplatin). The difference is Folfox is delivered via an infusion pump and capecitabine (Xeloda) is a pill you take. Each has similar but slightly different side-effects. A lot of patients who work while on chemo like to take Xeloda because you don't have to wear a pump into work.

Although you will have some nausea, diarrhea and fatigue, you will be given medications to alleviate the symptoms. Make sure you stay hydrated - it's easy to get dehydrated on chemo which makes all the side-effects worse and can be life-threatening. Come here to ask questions or just to vent! We've all been where you are and there are a lot of great people on this forum who are both knowledgeable and generous with their advice.

Take time to deal with the news - it's completely normal to feel sad, angry, shock, disbelief, etc. If you have a close friend or family member, ask them to go to appointments with you. It's easy to be overwhelmed by all the new terminology and only hear half of what the oncologist is saying. Having an extra person in the room is helpful for remembering what was said after you get home. Also, get a notebook that can hold all your CT, PET, pathology, and blood test results. Ask for copies of everything and put them in it.

And yes, I would highly recommend going to MD Anderson for your care. It makes a huge difference to get treatment at a large NCI-designated cancer center. Ask for a test for Lynch syndrome (an inherited condition that increases your risk of colon cancer and other cancers) so you know if your children should get colonoscopies.

Remember to breath. You can get through this. Try to focus on what you can control, not what you can’t. You have cancer, but there is treatment available, and in your case, this treatment will give you an excellent chance of defeating it.

(((Hugs to you)))
Julie
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

MDK
Posts: 46
Joined: Sun Nov 29, 2015 1:43 pm

Re: Just diagnosed and hopeless

Postby MDK » Thu Sep 22, 2016 8:01 pm

Cry all you want honey, no one here is going to say a thing. No matter what our story turns out to be - the initial shock, sadness, anger, grief - whatever emotion you want to name - is normal.

Please take someone with you to your appointments - I found, and am still finding - that when I am hit with bad news I stop focusing. And just bug the heck out of your doctor's office until you get what you need.

This board is a wealth of information, stick close!
Diagnosed 11/9/2015
Stage III Rectal Cancer
Began Chemoradiation 01/04/2016
Completed Chemoradiation 2/17/16
Local Excision
Developed Rectovaginal Fistula
06/24/16 APR / Flap Repair Fistula
Permanent Colostomy
09/20/2016 Liver Mets, possible Lung Mets
9/16 - 11/17 Xeloda and Avastin to progression
12/17 - 01/18 Folfox 6 sessions liver tumor shrank considerably - severe allergic reaction
01/18 - 04/18 Xeloda and Avastin - Progression
06/18 Avastin and Irinotecan

Philippians 4:6-7

TXLiz
Posts: 249
Joined: Thu Sep 22, 2016 3:31 pm

Re: Just diagnosed and hopeless

Postby TXLiz » Thu Sep 22, 2016 9:05 pm

Thank you both so much for your replies. It means so much to hear from people who are in the same boat.

I am worried if being diagnosed with stage 3 cancer in late August and not starting chemo until early October is ok? My husband really wants us to seek treatment at MD Anderson, and I can only get an appt 5 Oct. I have read on this board that care from a top cancer center is considered better for survival.

I do take my spouse with me if he can get off work.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
MSI-high
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: Just diagnosed and hopeless

Postby jhocno197 » Thu Sep 22, 2016 10:04 pm

You are not being a baby.

If you do not like your oncologist and/or their office procedures, definitely go somewhere else.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

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

Re: Just diagnosed and hopeless

Postby KElizabeth » Thu Sep 22, 2016 10:07 pm

Hang in there friend. These first few weeks are scary but you can do this. Folfox is not too bad and many of us who have done the treatment were able to maintain full time employment and lead active lives. There are many ways to treat the side effects and no reason to suffer for long.
Keep your oncologist informed of any side effects when they occur so treatment can be adjusted if needed.

This can be stressful but you don't have to suffer. If you're having extreme anxiety you may want to consider asking your General Practicioner for a temporary prescription to Xanax or something similar to help you weather this storm. Personally sometimes I just get by and the Xanax helps me stay calm.

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

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

Re: Just diagnosed and hopeless

Postby BeansMama » Fri Sep 23, 2016 12:32 am

I'm sorry you have found a need to find us, but so glad you did.

You cry, get angry, curse cancer and everything that comes with it if you need to. We have all been there. You will find amazing support on this forum, no matter what questions or feelings you have.

The beginning is always hard, eventually you will have a routine. Everyone handles the chemo differently, there is no right or wrong. Make sure you communicate with your oncologist about your side effects so they can manage them properly.

I would suggest treatment at MD Anderson if you have it available, a major cancer center is never a bad thing.

I began my treatment in North Texas and found that group just did things differently. I have moved to North Carolina and I am going to a large well rated cancer center now and the difference in care is astounding. I much prefer being given information and being kept in the loop of my treatment instead of "scans look good lets keep going" and having to pull teeth to get measurements on tumor shrink.

Another thing I advise is always ask for a printout of scan results, pathology reports, labs, etc. Especially if they don't automatically give them to you.

I have a binder that contains all of that. I figure it won't hurt to have all that information as well as a meds list I keep up to date in the event of an emergency.

Lean on us for support as you need to. There are things we understand that others just don't. 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

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horizon
Posts: 1668
Joined: Tue Apr 12, 2011 10:10 pm

Re: Just diagnosed and hopeless

Postby horizon » Fri Sep 23, 2016 12:52 am

Don't feel hopeless. The part of the journey you're at is horrible and terrifying. The worst mistake I made was consulting Dr. Google and scaring myself senseless over scenarios that did not happen. At the start of chemo 6 months seems like an eternity. Just work on getting through each treatment and before you know it you'll have several under your belt.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 12 years NED). Is this real life?

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: Just diagnosed and hopeless

Postby Deb m » Fri Sep 23, 2016 8:37 am

We received our care from MDA and it wasn't easy because we live in Kansas. You are so lucky to be so close to them.. I wouldn't think twice about not going there for treatment. My husband has been NED for over five years and I pray every day that that continues, for the fear for me has never gone away.

You will get great care there if you chose to go there.

TXLiz
Posts: 249
Joined: Thu Sep 22, 2016 3:31 pm

Re: Just diagnosed and hopeless

Postby TXLiz » Fri Sep 23, 2016 12:19 pm

Thank you all so very much for your replies and kindness. It means the world to log on and see your messages. It truly does.

I fear the future so much. I need to stay away from Dr Google, the colon cancer survival nomograms, the case studies with charts that feature survival lines that seem to be ski slopes down scarily steep mountains...

Is it terrible I watch junk TV and try to distract myself with things that aren't important? I hope not, as I think that is better than playing cancer researcher jr and scaring myself into a coma.

Bean's Mama, thank you for adding me to your prayer list. I will add you to mine as well.

I spoke with my husband last night when he got home; he works many hours per week and we don't speak often during the work day. We decided to go MD Anderson and make that drive. It's only 3 hours each way, and that's a short drive to receive care. I really liked my onc, he was so kind when I was hospitalized and came to see me 3 times.

I have my little cancer folder, and it's already full. Guess I need a "trapper keeper" with the "Hang in There" kitty dangling from a tree by his claws... :lol:

I do appreciate all advice. I started reading here a few days after surgery and felt blessed to have found such a forum.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
MSI-high
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: Just diagnosed and hopeless

Postby BrownBagger » Fri Sep 23, 2016 1:06 pm

From what I can see, you're a long way from hopeless. You may feel helpless, but that's different.

I agree that M.D. Anderson is a good choice in your case. I drive 5 hours each way to NYC to see my onc at Sloan-Kettering, and I feel blessed to be so close to such fine care. As Juliej says, it does make a big difference. The bigger a treatment center/hospital is, the more experience they have treating exactly what you've got. That's something smaller institutions simply can't offer--though they are great for things like infusions and other treatments prescribed by your docs at MDA.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

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

Re: Just diagnosed and hopeless

Postby rp1954 » Fri Sep 23, 2016 1:51 pm

In the general population, one figure that I've seen for macrocytosis (platelets greater than an upper limit value, ca 380-450) is that 2 out of 3 cases are "benign diseases" (i.e. not cancer) or causes, including infections, inflammatory diseases, and surgery. Having a cancer diagnosis changes the stakes and stats, but they've been doing things to you, too. In that third case, I would carefully gather every medical record, do some extra bloodwork yesterday, and perhaps explore or line up other consultations (Houston, MSKCC, perhaps independent integrative places like Block or Riordan) ahead of time to try to get ahead of the curve timewise.

One thing I would suggest is the more you discuss the cancer details and which kind of doctor said what, probably the more comparable experiences and their resolutions others could share. One of the big time crunches right now is getting all the information and sources you need to start at least parts of a coherent treatment. Although some places are better than others, I've never seen what I would consider to be the complete "one stop shop" for CRC. Power is getting started sooner and smarter, adding better options in the bad situations if necessary.
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

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: Just diagnosed and hopeless

Postby juliej » Fri Sep 23, 2016 3:52 pm

TXLiz wrote:I am worried if being diagnosed with stage 3 cancer in late August and not starting chemo until early October is ok?

A few weeks more weeks shouldn't make a big difference.

TXLiz wrote:I fear the future so much. I need to stay away from Dr Google, the colon cancer survival nomograms, the case studies with charts that feature survival lines that seem to be ski slopes down scarily steep mountains...

On one hand, it's very smart to learn everything you can about your cancer, the meaning of lab test results, the terms used on CT scans, etc. However, it's not good to use Dr. Google for prognosis. The articles are too out-of-date unless you have access to current medical journals and even then it's important to realize that how you respond to treatment is unique to you and you alone. MSK has good CRC nomograms if you're interested, but stay away from googling every article/story about colon cancer.

TXLiz wrote:Is it terrible I watch junk TV and try to distract myself with things that aren't important? I hope not, as I think that is better than playing cancer researcher jr and scaring myself into a coma.

It's completely normal to want/crave distraction. At first I found myself going to movies just to turn off my mind. Of course, I had to carefully screen them to make sure they weren't about a cancer patient who died! I'm a runner so after a few days of freaking out, crying, and watching too many movies, I laced up my Nikes and headed outdoors. I listen to dance tracks on my iPod when I'm running so the endorphins hit my system right when "What Doesn't Kill You Makes You Stronger" came on. Suddenly I felt like Superwoman! :D I kept running all the way through chemo (even though the speed and mileage went waaaay down) and it made all the difference in both my attitude and my ability to handle chemo.

I would suggest using this time to fully recover from the surgery and get strong for the upcoming chemo. Eat healthy foods, get some exercise, mediate/pray and relax as much as you can. People will tell you, "cancer is a marathon, not a sprint," and to do that marathon, you have to be as ready as you can be -- physically, mentally, and spiritually.

TXLiz wrote:We decided to go MD Anderson and make that drive. It's only 3 hours each way, and that's a short drive to receive care.

Yes! :D So glad to hear you're going to MD Anderson! And glad to hear you have your notebook ready to go. It's nice to have a water bottle (either filled with water or your favorite juice) and something to nibble on during the infusion. Goldfish crackers were my go-to snack. Also you might take a book to read or a movie to watch on your iPad or something to distract you. It's a longish day so it's a good idea to prepare for it.

Sending good energy and prayers your way!
Julie
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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

Re: Just diagnosed and hopeless

Postby DarknessEmbraced » Fri Sep 23, 2016 4:32 pm

Welcome to the board and sorry for the reason you are here.*hugs* You are not being a baby!*hugs* When I was diagnosed in was in complete shock and felt like I was outside my body. I couldn't think. Sorry you have to wait for chemo but from what I've read colon cancer is very slow growing so a few weeks shouldn't matter.*hugs* I hope your recovery goes well and good luck with chemo.*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! :)

Monique
Posts: 103
Joined: Mon Jun 09, 2008 2:54 am

Re: Just diagnosed and hopeless

Postby Monique » Fri Sep 23, 2016 6:33 pm

Hello TXLiz,

As others have pointed out, you're not being a baby! Rather, you're going through a totally understandable reaction to an upsetting situation. I was in the same situation ten years ago when I too was diagnosed with stage III colon cancer - I also had two lymph nodes that tested positive. My surgeon also described my tumour as 'lemon-sized'. Anyway, my advice would be to try taking things day-by-day. As Beans Mama and Elizabeth pointed out the beginning is indeed hard, but it's likely that you'll feel less rattled once your treatment starts and you have a plan in action.

While undergoing treatment I suggest staying very hydrated. This will help with chemo symptoms and also address bowel issues such as constipation. Another hint would be to stay on top of your nausea, if indeed you suffer from it, as nausea can be hard to curb if it gets too high. Fortunately there are some wonderful nausea drugs. Also, keep in mind that many people do very well when undergoing chemo.

Hang in there and don't be afraid to reach out to friends (both online and off!). The Colon Club was a wonderful resource for me.

Warm wishes,
Monique


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