Chemo treatment woes....

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Rich469
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Facebook Username: Richard Genzlinger Jr

Chemo treatment woes....

Postby Rich469 » Sun Mar 12, 2017 10:31 am

My diagnosis started last May 2016 when I was sitting with my girlfriend and farted. At that moment I thought it was a shart.. lol. I went to the bathroom and discovered a large blood spatter in my underwear and when I went to the bathroom the water was red with blood. 2 weeks later during a colonoscopy they discovered a golf ball sized tumor at the top of my rectum. An initial biopsy came back pre cancerous, but due to the size of the tumor it had to be removed. After surgery the tumor was biopsied and came back positive. 6 weeks of Radiation and carrying a pump with 5-FU 7 days a week, then a colon resection surgery followed in December. I now have a temporary colostomy bag and just finished my 4th treatment of chemo with 8 to go. My chemo consists of an IV of Oxaliplatin and 2 days of 5-FU on a pump. The side effects of the Oxaliplatin are horrendous with very bad cold sensitivity in my fingers and throat which are getting worse and seem to be more permanent. Anyone else doing or have done a similar treatment? It seems a bit excessive to me as I had 1 lymph node come back positive after surgery but my PET scan showed no spread of cancer. I am seriously considering stopping the chemo after a couple more treatments and exploring alternative methods of treatment.

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ANDRETEXAS
Posts: 543
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas

Re: Chemo treatment woes....

Postby ANDRETEXAS » Sun Mar 12, 2017 12:22 pm

I think it would be a mistake to stop your chemo. You are receiving the standard chemo treatment (even with one lymph node involved). The purpose of your chemo is not because your PET scan doesn't show any evidence of the cancer spreading, but to keep it from spreading in the future and eliminate any stray cancer cells NOW. It's possible that you may be able to stop after 8+ infusions, but that should be in consultation with your medical team. Yes, the side effects you are having are common, and they generally do get worse with time. That is why you should discuss all your side effects each time with your oncologist so that an informed decision can be reached as to how long your chemo should be continued for best results without long-lasting effects. Best of luck to you... Andre
2014
2/10 - Colon resect
2/13 - DX- Stg IIIb
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT

ONE DAY AT A TIME !

Beckster
Posts: 97
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Chemo treatment woes....

Postby Beckster » Sun Mar 12, 2017 12:45 pm

Rich469 wrote:My diagnosis started last May 2016 when I was sitting with my girlfriend and farted. At that moment I thought it was a shart.. lol. I went to the bathroom and discovered a large blood spatter in my underwear and when I went to the bathroom the water was red with blood. 2 weeks later during a colonoscopy they discovered a golf ball sized tumor at the top of my rectum. An initial biopsy came back pre cancerous, but due to the size of the tumor it had to be removed. After surgery the tumor was biopsied and came back positive. 6 weeks of Radiation and carrying a pump with 5-FU 7 days a week, then a colon resection surgery followed in December. I now have a temporary colostomy bag and just finished my 4th treatment of chemo with 8 to go. My chemo consists of an IV of Oxaliplatin and 2 days of 5-FU on a pump. The side effects of the Oxaliplatin are horrendous with very bad cold sensitivity in my fingers and throat which are getting worse and seem to be more permanent. Anyone else doing or have done a similar treatment? It seems a bit excessive to me as I had 1 lymph node come back positive after surgery but my PET scan showed no spread of cancer. I am seriously considering stopping the chemo after a couple more treatments and exploring alternative methods of treatment.



I know how you feel, but I agree that you need to give it more time. If the Oxi is bothering you, your oncologist might be able to lower of eliminate it and just leave with with 5/FU. I had NO lymph node involvement and they started me with the same therapy as you, except I took the pill form of 5/FU so I did not need a port. They placed me on chemo, stage 2A, because of 2 subjective risk factors. However, I was allergic to the Oxi and it was eliminated. I am now only on the pill form of 5/FU, 14 days on the pill and 7 days off. I am half way through and there are side effects, but I look at the long term outlook. During my last appt, I expressed concern that the side effects, especially the hand and foot syndrome, are really bad during the last 4 days on the pill. After a discussion, he has me taking the pill for 12 days instead of 14. He said this is a minimal reduction and still effective. Speak with you doctor and work at a plan that will allow you to finish you therapy. No one on this forum wants to be on chemo, but we will do what needs to be done to live a long and happy life! Keep the faith!
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
Tumor type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Tumor grade: G3 (surgical) G2 (biopsy from colonoscopy)
TNM: T3N0M0/IIA
Positive lymph nodes: 0 out of 24
Preoperative CEA- 1.9, Pre Chemo 2.5
Lymphovascular invasion
Surgical margins: clear
Lynch- Negative
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17- CT scan and bloodwork (cea 3.6) NED :)

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horizon
Posts: 1393
Joined: Tue Apr 12, 2011 10:10 pm

Re: Chemo treatment woes....

Postby horizon » Sun Mar 12, 2017 4:05 pm

You mentioned cold sensitivity in your throat. I found that I had to microwave my drinking water from the tap before I could comfortable drink it. You might want to try that.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 6 years NED). Is this real life?

Lee
Posts: 4906
Joined: Sun Apr 16, 2006 4:09 pm

Re: Chemo treatment woes....

Postby Lee » Sun Mar 12, 2017 4:58 pm

So sorry for what you are going through, butt if at possible, don't quit now. Talk to your Onc, see if a reduction in Oxi might help. I had to drink everything at room temp, kept pot holder next to fridge at all times and lived in a lot of sweats (& I live in Arizona and don't like the heat). Drink lots of liquid before, during and after each chemo treatment. If you can, exercise had been know to help. Just walking 15-20 mins each day can help. I always found eating an breakfast egg cheese sandwich on way to chemo really helped me also.

Keeping food in my stomach kept nausea at bay. Thus several small meals through out day vs 3 meals a day. Also don't worry about eating healthy while on chemo. Eat whatever sounds/feel good, even if that is junk food.

Hows your blood working doing?

May I ask, how old are you? If you are young, you really want to give this 110%. You've only got one shot to do this right. You don't want to look back and regret. And stage II can be such a gray area sometimes.

Tell your Dr all your symptoms. Hate to say this, butt some of those symptoms will get worse with each treatment. Thus you want to stay ahead of it when ever possible.

And lastly, you will find a lot of support here, people who get it and know EXACTLY what you are going through. And sometimes, we can offer a possible solution.

All the best,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

PainInTheAss
Posts: 655
Joined: Tue Jul 02, 2013 3:08 am

Re: Chemo treatment woes....

Postby PainInTheAss » Mon Mar 13, 2017 6:06 am

I would get a second or third opinion about how many rounds you should get. It originally was 24, but trials found 12 just as effective. Then 8 was found to be as effective as 12. Later, 6 was found to be as effective as 8 (I did 6). I saw some patients in the last few years who only did 4 or 5 rounds. Standard treatment is changing but many Oncs do not keep up with or seem to trust the new trial data.
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

Deb m
Posts: 331
Joined: Tue Jan 14, 2014 10:08 am

Re: Chemo treatment woes....

Postby Deb m » Mon Mar 13, 2017 9:12 am

My husband was a stage IIb4ta and he didn't want to do the whole 12 treatments of folfox because of the side effects he was having. On oncologist at MDA said it was very important to continue and hit the cancer as hard as you can right from the start. Some have an attitude to go light at first to see if that works and save "the gusto" for later if needed. The problem is that when it comes back, it's usually much more aggressive and "the gusto" won't work where it would of had a much greater chance of working from the start, before the cancer cells mutate and become resistant some times to treatment that may have otherwise worked. We were able to do 9 rounds of complete folfox, and the last three treatments the oxi was dropped. Your a stage III I think you said, one lymph node involvement, I would press on and be as aggressive as I could. This treatment is not just to prevent spread to other distant organs, but rather to kill cancer cells that may be floating around and if not killed now, will set up shop elsewhere and will lead to cancer somewhere else in you body that will be much harder to treat then. Try and hang in there the best you can!

deb m

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peanut_8
Posts: 2074
Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: Chemo treatment woes....

Postby peanut_8 » Mon Mar 13, 2017 9:31 am

PainInTheAss wrote:I would get a second or third opinion about how many rounds you should get. It originally was 24, but trials found 12 just as effective. Then 8 was found to be as effective as 12. Later, 6 was found to be as effective as 8 (I did 6). I saw some patients in the last few years who only did 4 or 5 rounds. Standard treatment is changing but many Oncs do not keep up with or seem to trust the new trial data.


Hi PITA,
This is interesting, and valuable to many Colon Clubbers. Do you have a link to a medical study where this was validated?
Thanks,
peanut
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

Beckster
Posts: 97
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Chemo treatment woes....

Postby Beckster » Mon Mar 13, 2017 10:38 am

peanut_8 wrote:
PainInTheAss wrote:I would get a second or third opinion about how many rounds you should get. It originally was 24, but trials found 12 just as effective. Then 8 was found to be as effective as 12. Later, 6 was found to be as effective as 8 (I did 6). I saw some patients in the last few years who only did 4 or 5 rounds. Standard treatment is changing but many Oncs do not keep up with or seem to trust the new trial data.


Hi PITA,
This is interesting, and valuable to many Colon Clubbers. Do you have a link to a medical study where this was validated?
Thanks,
peanut



YES....I would love to see medical studies for this validation!
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
Tumor type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Tumor grade: G3 (surgical) G2 (biopsy from colonoscopy)
TNM: T3N0M0/IIA
Positive lymph nodes: 0 out of 24
Preoperative CEA- 1.9, Pre Chemo 2.5
Lymphovascular invasion
Surgical margins: clear
Lynch- Negative
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17- CT scan and bloodwork (cea 3.6) NED :)

TXLiz
Posts: 179
Joined: Thu Sep 22, 2016 3:31 pm

Re: Chemo treatment woes....

Postby TXLiz » Mon Mar 13, 2017 4:43 pm

I have one more round of FOLFOX to go. It sucks, straight up.

I haven't had any reductions in my chemo. My throat was awful- I felt like I was swallowing broken glass even with room temp fluids. Oddly, now, with one treatment to go. my throat neuropathy is completely gone~

I live in TX and it's already in the 80s here somedays, but I drink hot chocolate, warm tea, and yes, warm water. Even warm milk on "cold" cereal.

My sense of taste is gone. My neuropathy never really leaves now, in my hands, fingers, and feet. I have been getting "electric shocks" in my feet and legs. It's annoying and makes me feel crazy but I have to fight this.

Good luck my friend.
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
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"

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LPL
Posts: 265
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Chemo treatment woes....

Postby LPL » Mon Mar 13, 2017 5:49 pm

TXLiz wrote:
My neuropathy never really leaves now, in my hands, fingers, and feet. I have been getting "electric shocks" in my feet and legs. It's annoying and makes me feel crazy but I have to fight this.


Can I ask - What do you mean when you say: you "have to fight this"?
Do you mean you have to have 'no reduktion' in your next/last chemo - that you have to accept the neuropathy?
Have you told your oncologist that you are having these side effects?
I thought it was important to lower (or stop) Oxilaplatin if you get neuropathy ?
Please forgive me if I misunderstand.
All the best to You ! /LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

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LeonW
Posts: 279
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Chemo treatment woes....

Postby LeonW » Mon Mar 13, 2017 7:14 pm

Rich469 wrote:>> Anyone else doing or have done a similar treatment? It seems a bit excessive to me as I had 1 lymph node come back positive after surgery but my PET scan showed no spread of cancer. I am seriously considering stopping the chemo after a couple more treatments and exploring alternative methods of treatment.

Hi Rich,

I understand your worries; chemo ain't no fun, but as ANDRETEXAS said, its purpose is to keep the cancer from spreading. When you look around on this forum you'll see that there are many who have recurrences despite an earlier declared NED. I'm not in your league in that my cancer had already spread at diagnosis. Therefore I had little choice and took the full Capox treatment to make liver mets resectable. And, with success. Pathology reported that the chemo had been 100% effective; they found no living cancer cells in the resected samples - all due to chemo. When that news was shared, we got the full ceremony from all hot shots of the university faculty where I had my treatment. Main message was that there was a real possibility that the capox may have eliminated any other stray cells too.

You say that you're considering alternative methods of treatment. Your choice, of course. I'm glad I sat out the chemo, and yes, I still suffer from some neuropathy 3 1/2 yrs after chemo; and it is not allways 100% effective. But keep in mind that scans may miss small spots. With a lymph node affected, I'd say nuke any stray one that might be around. Keep in mind that you'll get over most of the chemo effects once cycles are over. And do keep your docs informed - they know when to reduce or stop.

Best wishes, L
Dec 2012 - Dx CC; MM @ 65yrs, 2 unresect liver mets, CEA 41.8
Jan 2013 - colectomy @ spleen (IVa T3N1bM1a) 2/26 nodes, MSI-low
Feb-Aug - 1x Xelox-7x Xelox/Avastin, mets shrink from #3
Sept - 2x failed Portal Vein embolization
Oct 2013 - R liver resect 28 hosp days (liver failure, delirium, emboli, encephalopathy) Pathology: no cancer cells pCR (ypT0N0M0)
2014/15 - recovery; benign polyp Apr '15
Apr 2016 new house/town/life
clean CTs and 1.3/1.4 CEAs: 4x2014, 4x2015/16, May2017; next Nov 2017

PainInTheAss
Posts: 655
Joined: Tue Jul 02, 2013 3:08 am

Re: Chemo treatment woes....

Postby PainInTheAss » Wed Mar 15, 2017 11:34 am

peanut_8 wrote:
PainInTheAss wrote:I would get a second or third opinion about how many rounds you should get. It originally was 24, but trials found 12 just as effective. Then 8 was found to be as effective as 12. Later, 6 was found to be as effective as 8 (I did 6). I saw some patients in the last few years who only did 4 or 5 rounds. Standard treatment is changing but many Oncs do not keep up with or seem to trust the new trial data.


Hi PITA,
This is interesting, and valuable to many Colon Clubbers. Do you have a link to a medical study where this was validated?
Thanks,
peanut


Not anymore, but I did find some when I was going through chemo just by googling.They seem to continually do trials with fewer rounds, but it takes years to get the results and even longer for the data to be widely accepted. Many Oncs are still doing 12 rounds. I found it very interesting to learn that many studies will include patients who only did one round in the stats. Eventually, standard treatment may only be one round.
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

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peanut_8
Posts: 2074
Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: Chemo treatment woes....

Postby peanut_8 » Wed Mar 15, 2017 1:50 pm

PainInTheAss wrote:
peanut_8 wrote:
PainInTheAss wrote:I would get a second or third opinion about how many rounds you should get. It originally was 24, but trials found 12 just as effective. Then 8 was found to be as effective as 12. Later, 6 was found to be as effective as 8 (I did 6). I saw some patients in the last few years who only did 4 or 5 rounds. Standard treatment is changing but many Oncs do not keep up with or seem to trust the new trial data.


Hi PITA,
This is interesting, and valuable to many Colon Clubbers. Do you have a link to a medical study where this was validated?
Thanks,
peanut


Not anymore, but I did find some when I was going through chemo just by googling.They seem to continually do trials with fewer rounds, but it takes years to get the results and even longer for the data to be widely accepted. Many Oncs are still doing 12 rounds. I found it very interesting to learn that many studies will include patients who only did one round in the stats. Eventually, standard treatment may only be one round.


I've heard of patients being recruited for trials where 6 rounds of FOLFOX are being tested to see if it is as effective as 12 rounds. Haven't seen any results.

Did find this, which seems to be a current, reputable, published trial.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4980863/

Conclusion from trial...
Cycle number of adjuvant FOLFOX is a significant prognostic factor for stage III colon cancer patients. At least 8 cycles are needed to have an overall survival benefit, and 7 to disease-free survival.

That's quite a bit different than you're saying. If you have different information, I'd be interested in seeing it.

peanut
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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dianetavegia
Posts: 2598
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Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia
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Re: Chemo treatment woes....

Postby dianetavegia » Wed Mar 15, 2017 1:57 pm

Rich, I completed chemo almost 8 years ago. The cold sensitivity is the only thing that got better. Actually, 2 months after chemo ended, the sensations in my feet moved up my legs and over the years have reached my upper thigh. I still have tingles in my fingertips but my feet feel like I'm walking in wet sand and my legs hurt if something like a feather or wind brush across them. Slap them, no problem, just the slight touch is painful.

The chemo you described sounds like FOLFOX. I think just about everyone wore the pump for 2 days. I did 12 treatments in 2009 at age 58. I was Stage IIIB colon. Sounds like you were Stage III rectal.
Stage IIIB cc surgery 1/7/09. 5/17 nodes. 12 tx FOLFOX
Stage IVa 2/15/12. CEA 6.4 PET = 1.5cm liver met. HR 4/11/12 No chemo

NED April 2017 Eight yrs, 3 months since original dx. Five yrs. NED post liver resection.
“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2


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