Oncology and hiding info

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Calla
Posts: 72
Joined: Fri Dec 25, 2015 7:36 pm

Oncology and hiding info

Postby Calla » Thu Mar 03, 2016 10:53 am

I got great news today at the oncologist. But this is also a cautionary tale.
Met with the oncology nurse first. She presented me a plan - a chemo cocktail and having a port to infuse the cocktail surgically implanted in my chest. Let's schedule it!

I had done my homework and knew that one possible side effect of Folfox (the oxa, in particular ) can be permanent neuropathy - nerve damage. In hands and feet but also optical nerves, nerves in your digestive system, joints locking up, etc.

I asked if there were other treatment options. She didn't really want to go into that, she stalled, but finally did. I could take pills of 5-FU that has no known permanent side effects (but some temp ones) I asked what the difference between the two was for staying alive for 5 years and chances the cancer could come back within 3 years.

She used a risk calculator that used 17 different factors particular to me and the tumor I had.

NO difference in survival rate. 3% to 5% difference in getting cancer again. That's it. But the nurse acted like that was huge. In fact she presented it a huge difference. Not her choice to make.

Talking to the actual oncologist, he said permanent neuropathy is a serious concern, he sees it often and no...not much difference in outcome between the two treatments. But some people will do anything to decrease their odds of getting cancer again by even 1%. And for them, Folfox is the right decision. Others value quality of life and feel 3% to 5% is a small risk of recurrence vs the risk of permanent side effects from the oxa. We talked about ways to minimize neuropathy. And that we could try it and stop if it was a problem.

I also talked to my surgeon, who will reverse my ostomy after chemo is done. I asked him directly about Oxa and nerve damage and if it affects the bowels. He said there are no studies showing that oxa affects bowel nerves and leads to poop issues like clustering or chrome constipation. But that many surgeons do believe that it does. That, even when people may not notice neuropathy in their hands and feet, it may be damaging nerves in the rectum that give the signals on when to poop.

I'm going with the pills. No damn port implanted into my chest and no chance of losing all feeling (and fine motor control) in my hands or feet or losing my eyesight (and ability to drive). I also want to give myself the best chance for success in my reversal. No going in for chemo infusions and having a pump.

I figure if I'm going to have a recurrence, I'm going to have one no matter which treatment is choose. So instead I'm focusing on what will help me enjoy my life more now and in the future.

6 pills a day for 6 months. Yes, there can be brutal side effects. I suck at taking pills so if i can't do it, I'll get the port. But, I'm happy about my decision because it's an informed decision based on my priorities.

But if the oncology nurse had her way I would never have even known this was an option!

I start when I get the pills in the mail, should be the 21st of March.
Last edited by Calla on Thu Mar 03, 2016 11:09 am, edited 2 times in total.
Married, adult child (24), cat (with lymphoma )
01JAN16 Colonoscopy, mass 20 centimeters from anal verge
02JAN16 CT, 2 lymph nodes affected, growth through the wall, Stage 3b
15JAN16 colon stent - failed
27JAN2016 second colon stent - failed
28 JAN 2016 surgery to place anal irrigation tube -failed
01FEB2016 colon resection and colostomy

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: Oncology and hiding info

Postby midlifemom » Thu Mar 03, 2016 11:00 am

Education and self advocacy - great tools in beating this.
Good for you!
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

Lund5505
Posts: 69
Joined: Tue Jul 08, 2014 1:37 am

Re: Oncology and hiding info

Postby Lund5505 » Thu Mar 03, 2016 11:12 am

You should be so proud of yourself. Both for knowing the risks and for getting them to give you the real odds.

I so wish I had been told that oxaliplatin caused permanent neuropathy. When I asked at the beginning of my journey I was told the neuropathy resolves after chemo is over. Particularly in my case there was no need to do the oxi. I had over 50 mets in my liver to start with there was no expectation that including the oxi would kill all of them and I've been left with the last two years of my life with horrible pain from neuropathy.

Again, way to go you.
10/2013 dx female @54 stage IV innumerable liver mets
CEA 2600 kras wild MSS
11/2013 folfox avastin 8 rounds
6/2014 neuropathy development CEA 9.8 but won't go lower
8/2014 colon resection
11/2014 folfiri and cetuximab 9 rounds CEA 1700
4/2015 cetuximab only 4 rounds CEA down to 20 but won't go lower
7/2015 chemo break getting too toxic
10/2015 xeloda 3 rounds CEA 800 then 300 then back up to 900
1/2016 irinotecan CEA 1800 at start 2/2016 too toxic
4/2016 Cea 3200
Hospice recommended but I'm not ready yet

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: Oncology and hiding info

Postby Lydia666 » Thu Mar 03, 2016 11:15 am

Calla wrote:I got great news today at the oncologist. But this is also a cautionary tale.
Met with the oncology nurse first. She presented me a plan - a chemo cocktail and having a port to infuse the cocktail surgically implanted in my chest. Let's schedule it!

I had done my homework and knew that one possible side effect of Folfox (the oxa, in particular ) can be permanent neuropathy - nerve damage. In hands and feet but also optical nerves, nerves in your digestive system, joints locking up, etc.

I asked if there were other treatment options. She didn't really want to go into that, she stalled, but finally did. I could take pills of 5-FU that has no known permanent side effects (but some temp ones) I asked what the difference between the two was for staying alive for 5 years and chances the cancer could come back within 3 years.

She used a risk calculator that used 17 different factors particular to me and the tumor I had.

NO difference in survival rate. 3% to 5% difference in getting cancer again. That's it. But the nurse acted like that was huge. In fact she presented it a huge difference. Not her choice to make.

Talking to the actual oncologist, he said permanent neuropathy is a serious concern, he sees it often and no...not much difference in outcome between the two treatments. But some people will do anything to decrease their odds of getting cancer again by even 1%. And for them, Folfox is the right decision. Others value quality of life and feel 3% to 5% is a small risk of recurrence vs the risk of permanent side effects from the oxa. We talked about ways to minimize neuropathy. And that we could try it and stop if it was a problem.

I also talked to my surgeon, who will reverse my ostomy after chemo is done. I asked him directly about Oxa and nerve damage and if it affects the bowels. He said there are no studies showing that oxa affects bowel nerves and leads to poop issues like clustering or chrome constipation. But that many surgeons do believe that it does. That, even when people may not notice neuropathy in their hands and feet, it may be damaging nerves in the rectum that give the signals on when to poop.

I'm going with the pills. No damn port implanted into my chest and no chance of losing all feeling (and fine motor control) in my hands or feet or losing my eyesight (and ability to drive). I also want to give myself the best chance for success in my reversal. No going in for chemo infusions and having a pump.

I figure if I'm going to have a recurrence, I'm going to have one no matter which treatment is choose. So instead I'm focusing on what will help me enjoy my life more now and in the future.

6 pills a day for 6 months. Yes, there can be brutal side effects. I suck at taking pills so if i can't do it, I'll get the port. But, I'm happy about my decision because it's an informed decision based on my priorities.

But if the oncology nurse had her way I would never have even known this was an option!

I start when I get the pills in the mail, should be the 21st of March.

Calla, that's what they gave me , Xeloda pills. It's affected my skinn ( got dark), my hands and feet , nails and possibly my eyes- but i hope it will all be gone at the end of treatment. For better or worse, i too am glad I don't have to go for infusions , have a port and suffer through oxy- anyway, most people can't even handle it, or some people can't do it, they stop after a round or two.
Let's hope for a long, NED life!
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

Calla
Posts: 72
Joined: Fri Dec 25, 2015 7:36 pm

Re: Oncology and hiding info

Postby Calla » Thu Mar 03, 2016 1:40 pm

There's some shit side effects to 5-FU, no doubt. My oncologist told me to report any problems immediately so they can adjust dose/add a prescription to mitigate. None of us get to ride the cancer train of suck for free. I'm hoping the side effects are minimal and i have a long and happy life. And that you all do, too.
Married, adult child (24), cat (with lymphoma )
01JAN16 Colonoscopy, mass 20 centimeters from anal verge
02JAN16 CT, 2 lymph nodes affected, growth through the wall, Stage 3b
15JAN16 colon stent - failed
27JAN2016 second colon stent - failed
28 JAN 2016 surgery to place anal irrigation tube -failed
01FEB2016 colon resection and colostomy

rp1954
Posts: 1540
Joined: Mon Jun 13, 2011 1:13 am

Re: Oncology and hiding info

Postby rp1954 » Thu Mar 03, 2016 2:30 pm

You have added off label options with xeloda - celecoxib, targeted cimetidine if applicable, PSK, aspirin, vitamin D3, among the easy ones that might not freak the oncologist out. Some added to xeloda like the aspirin, celecoxib and/or targeted cimetidine may actually beat -oxi survivals where applicable.
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 to almost nothing mid 2018, mostly IV C

Calla
Posts: 72
Joined: Fri Dec 25, 2015 7:36 pm

Re: Oncology and hiding info

Postby Calla » Thu Mar 03, 2016 3:33 pm

Thank you! That's very helpful!
Married, adult child (24), cat (with lymphoma )
01JAN16 Colonoscopy, mass 20 centimeters from anal verge
02JAN16 CT, 2 lymph nodes affected, growth through the wall, Stage 3b
15JAN16 colon stent - failed
27JAN2016 second colon stent - failed
28 JAN 2016 surgery to place anal irrigation tube -failed
01FEB2016 colon resection and colostomy

JaninOz
Posts: 39
Joined: Sat Apr 12, 2014 5:48 am
Location: Brisbane, Australia

Re: Oncology and hiding info

Postby JaninOz » Fri Mar 04, 2016 5:09 am

HI Calla

I had 5FU only but via IV weekly. I'd had a bad reaction to it with a 24 hour bottle but by IV it was fine. My tumour had been reduced to overgrowth of scar tissue by radiation and post op pathology showed no signs of tumour cells.

My oncologist said for the few % extra that oxy gave, sometimes it just wasn't worth the side effects. I think it would depend on each individual case however.

I am very glad he decided that. I got every side effect going from just 5FU (except mouth ulcers) so I think Oxy would really have been a bad choice for me, unless it was absolutely necessary. I do have a small amount of neuropathy in my middle toes that I notice mostly when they get cold. They burn!

18 months on I am NED and CEA is 0.08.
Dx Feb 14 Rectal
T2N1M0 CT/MRI Stage 3A.
Apr 14 chemoradiation 24/7 infusion 5FU. Vasospasms. Pump removed.
leucovorin/5FU IV success.
Jul 14 LAR. No tumour cells found.
Oct 14 5FU/leucovorin bolus weekly x 13
Apr 15 Reversal
Apr 16 NED. CEA 0.04. Scan/colonoscopy clear

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spinnz
Posts: 74
Joined: Sat Dec 05, 2015 4:19 pm
Facebook Username: Diana Wiseley

Re: Oncology and hiding info

Postby spinnz » Fri Mar 04, 2016 3:03 pm

When I started chemo in November, I was told the exact same thing as you. I was also told to get a DUAL port! I was recently diagnosed and scared, so I did exactly as I was told without questioning or looking into it any further. I remember asking my onc about Xeloda and being told that it wasn't as effective... I ended up extremely neutropenic after the first round of chemo and needed 3 shots of Neupogen. I had Neulasta after the second round and my liver enzymes went haywire. I also had every other miserable side effect such as nausea, hand/foot syndrome, mouth sores, sensitivity to cold, etc. My quality of life was greatly reduced by having to be at the infusion center, then wear a pump for two more days, go back and get the pump off, then go get a shot of Neulasta. The dual lumen port was enormous in my chest and always sore. Seriously, I couldn't roll over at night without it waking me up.I was unable to do yoga because the port would cause incredible pain in my chest and shoulder. After my third treatment and being told that I would be off of treatment until my liver enzymes and hand/foot syndrome cleared up, I looked for and found a new oncologist. She explained that there's no difference between oral and infusion 5FU therapy. Since I was unable to tolerate oxaliplatin, she sent me to get my port removed and put me on Xeloda. She gave me my life back that day... I am on 2000mg. 2X a day for one week then off one week, etc. I am able to work every day, go to yoga, hang out with friends, eat what I want... the major side effect has been fatigue. I have mild hand/foot syndrome that abates the week I'm off. I only have to have monthly bloodwork and doctor visits now and all of my numbers have returned to within the normal range. As I said, I have my life back. The only people who know that I am on chemo are those that I choose to tell.

I did get a second opinion at OSU James Cancer Center last month and the Dr. Ciambor, the colorectal oncologist echoed what my second oncologist told me and encouraged me to continue on Xeloda since I am doing so well on it.
Dx age 53 10/8/15
Lap/robotic converted to open sigmoid colectomy, partial small-bowel resection and right salpingo-oophorectomy 10-9-15
CRC stage 3b, T3N1aM0
Margins clear of malignancy
1/27 lymph nodes
Well differentiated
CAT / MRI's indicate NED
FOLFOX + Neulasta- 2 rounds 11/15
Xeloda, 1 week on 1 week off 1/16- 5/16
1/5/16 CEA 1.0, 5/16, 1.0
Factor 13-bleeding disorder
NEW DX
11/15/18 IDC

ALW
Posts: 51
Joined: Tue Aug 11, 2015 9:07 am

Re: Oncology and hiding info

Postby ALW » Fri Mar 04, 2016 6:50 pm

Good for you; you have to be your own advocate! I did the first round of Xelox 3 weeks ago and the Oxi caused very scary side effects with my eyes. Everything would go totally black for a few seconds, then come back as tunnel vision that would slowly return to normal. I also had my vision freeze. I would move my head but the image didn't change. All of this was within 24-72 hours after the Oxi, then it was back to normal. Ophthalmology did not think it was related to Oxi. I called BS and after a very long talk with the Oncologist, I decided I was done with Oxi. I'll take my eyes over the 3% increase in odds. I might be singing a different tune if this damn cancer comes back, but for now I am okay with my decision.
Aug '15 Dx rectal cancer stage 2a @ 41 years old
Sept '15 Radiation & Xeloda
12/3/15 LAR with temp ileo - 0/20 nodes
1/5/16 reversal done early due to complications
2/16 Started 5 rounds Xeloda

User avatar
Cowgirl918
Posts: 319
Joined: Sun Jan 17, 2016 12:55 am
Location: Indiana

Re: Oncology and hiding info

Postby Cowgirl918 » Fri Mar 04, 2016 10:53 pm

Way to go Calla! You are your own best advocate. I am working with one of the top docs in the WORLD and my family physician and local surgeon are still mad that I didn't jump at a right hemicolectomy. My mass turned out to be tubular a adenoma and I will be checked again in August. I will fight hard for quality over quantity every day. We all should get to make that choice for ourselves. Hang tough!
HX Colon Polyps Villious and Tubillovillous
12/29/15 Colonoscopy/Endoscopy - Ascending Colon Mass- Hemicolectomy Scheduled
1/17/2016 Right Hemicolectomy Cancelled
1/25/2016 CT No evidence of other disease
2/12/2016 EMR-ascending colon mass 80% removed
5/29/2016 Compressed lumbar spinal fracture (riding accident)
8/12/2016 EMR #2 ascending colon mass curative
8/13/16 NED
10/18/16 Autoimmune Diseases confirmed

PainInTheAss
Posts: 668
Joined: Tue Jul 02, 2013 3:08 am

Re: Oncology and hiding info

Postby PainInTheAss » Mon Mar 07, 2016 7:28 pm

I just want to chime in here as a stage IIIc in case others are reading this who want off the oxi train thinking it doesn't "help much."

I, too, was very concerned about permanent neuropathy and long term quality of life versus the benefits. I knew from research that only 1% get grade 3 permanent neuropathy. That's a very small percentage, but huge if you are in that 1%.

I met with my onc and shared with him my concerns. He explained to me that the benefits of oxi and Xeloda/5FU are on a sliding scale based on your stage. For example, for stage 2A, oxi only makes a difference of about 1% or so, which is why 2As are often recommended to forgo oxi. The benefit is not seen to be with it for the many risks, but some still choose to do it for that extra 1%. So, 1% risk of getting permanent grade 3 neurapothy for 1% increase chance of not dying. For some, it's worth it.

That is not the same for other stages. He showed me a chart for my stage breaking down the benefits. Yes, 5FU has exactly the same benefit of Xeloda. I took Xeloda. But oxi has a much greater benefit for IIIc. No chemo was 33% no recurrence in 5 years, Xeloda/5FU added 12% and Oxi added 15% for a grand total of 60%. He confirmed that the risk of permanent grade 3 neuropathy was only 1% and most often happened in diabetics. Bear in mind that most colorectal cancer patients are older.

I don't remember the exact numbers now, but I was told the oxi benefit was higher that 3 to 5% for a stage 3b. Many patients do not understand this sliding scale and think a small benefit for one stage applies to all stages. It does not. Is a 10% benefit worth risking 1% permanent grade 3 neuropathy? I'm not sure. I think you have to ask the people who avoided neuropathy and got a recurrence. You might end up being one of them. I don't know where you got the idea that it doesn't matter what you do. It really does.

I hope you end up being cured. But I'd hate to see others follow in your footsteps in the name of "advocating." I don't think those numbers you were told sound right.

My neuropathy is almost gone now and my scans are clear. I'm glad I did everything I could to save my life.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

Calla
Posts: 72
Joined: Fri Dec 25, 2015 7:36 pm

Re: Oncology and hiding info

Postby Calla » Mon Mar 07, 2016 7:58 pm

PainInTheAss,
The first part of your post was awesome. Nicely informative that percentages change based on stage. (Although I noted my oncologist figured my odds based on 17 different factors, not just stage)

The last part was cruel. "I think you have to ask the people who avoided neuropathy and got a recurrence. You might end up being one of them." Really? You want to strongly imply that if I do have a recurrence it's my fault. I guess I would just have it coming, right? And you know better than my oncologist, correct?

The title of this group is Colon Cancer SUPPORT. You don't have to agree with my decision, you can feel free to correct or add to anything. But don't try to guilt me into doing a drug I've decided not to take or imply that if I get cancer in the future...well...I had it coming. Who even does that? That's like the people who, when they find out you have colon cancer ask how much red meat you eat.
Married, adult child (24), cat (with lymphoma )
01JAN16 Colonoscopy, mass 20 centimeters from anal verge
02JAN16 CT, 2 lymph nodes affected, growth through the wall, Stage 3b
15JAN16 colon stent - failed
27JAN2016 second colon stent - failed
28 JAN 2016 surgery to place anal irrigation tube -failed
01FEB2016 colon resection and colostomy

Calla
Posts: 72
Joined: Fri Dec 25, 2015 7:36 pm

Re: Oncology and hiding info

Postby Calla » Mon Mar 07, 2016 8:33 pm

As for neuropathy with oxaliplatin. ...studies are showing what many cancer survivors already know - the percentage who have permanent neuropathy is much higher than 1%

http://www.ncbi.nlm.nih.gov/pmc/article ... po=8.06452


"...severe chronic sensory neuropathy develops in 20%–50% of patients [1, 3], characterized by distal paresthesia and numbness, leading to functional disability. Because colorectal cancer survivors constitute the third largest group of cancer survivors [9], the implications of persistent long-term nerve damage imposes unacceptable burdens on quality of life in survivorship."
Married, adult child (24), cat (with lymphoma )
01JAN16 Colonoscopy, mass 20 centimeters from anal verge
02JAN16 CT, 2 lymph nodes affected, growth through the wall, Stage 3b
15JAN16 colon stent - failed
27JAN2016 second colon stent - failed
28 JAN 2016 surgery to place anal irrigation tube -failed
01FEB2016 colon resection and colostomy

Nik Colon

Re: Oncology and hiding info

Postby Nik Colon » Mon Mar 07, 2016 9:52 pm

I don't think PITA was trying to be rude, I get where she is coming from. I do have a question tho. You mentioned FOLFOX and that being the only option you were given at first, what about FOLFIRI?


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