Adjuvant chemo or not / Decision time for adjuvant chemo

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weisssoccermom
Posts: 5957
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Adjuvant chemo or not / Decision time for adjuvant chemo

Postby weisssoccermom » Sat Sep 07, 2019 10:25 am

I was a stage IIA...rectal cancer and I did chemo. Now, I will say that I did NOT do the oxi. Personally, I don't know what your onc is talking about that XELOX is brutal. He may be referring to the fact that with XELOX being given it every THREE weeks as opposed to every TWO weeks with Folfox, the OXI dose is quite a bit higher and the side effects from that may be more severe. However, many people on this board have done it without complaint.

I'd like to address the Xeloda component. I know of many people who have taken or are taking Xeloda while covered with Medicare and yes, it DOES cover it. It does NOT cover it under the traditional Medicare prescription plan....Part D I believe BUT......it is covered under the Medicare Part B plan. It's not considered a 'prescription' like a statin or antibiotic would be. It falls under the coverage for the cancer treatment. Please check into that. My friend who has pancreatic cancer, is on traditional Medicare just picked up his pills and they were covered. Other members of this board, covered under Medicare have also used Xeloda and it was covered.

You could always do the Xeloda and opt out of the oxi. Honestly, the 5FU or Xeloda is the drug that does most of the work and I didn't have any problems with tolerating it. Not sure what your onc is talking about but I certainly would, at the very least, consider doing just Xeloda or 5FU.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

NHMike
Posts: 2309
Joined: Fri Jul 21, 2017 3:43 am

Re: Adjuvant chemo or not / Decision time for adjuvant chemo

Postby NHMike » Sat Sep 07, 2019 10:27 am

hwr wrote:I so much appreciate your responses.

As for upcoming plans between now and year end, I wonder if I would realistically be able to keep any of them if I began chemo in late September.

1. 200 mile drive each way for a reunion on September 27-29. Low key event, mainly dinner with friends and gathering at local neighbor church where we all grew up a kids in the 50's. I would be travelling alone. I could always delay start of chemo to 9/30 rather than 9/23.

2. Annual beach fishing trip with son, son-in-law and wives week of October 12-19. Always a wonderful week. look forward to it all year.

3. Caribbean cruise December 9-20. We are looking forward to it, but this would be our 26th cruise so it's not the end of the world.

The oncologist said maybe to trips one and two, but no to the cruise.


I started Adjuvant chemo around Dec 20, 2017 and took an Amtrak trip from Boston to Washington DC from January 3, 2018 - January 8, 2018. The first few days the temperatures were -10 to -20 so it was brutal with the Oxaliplatin. But we managed. I had an ileostomy bag as well which made things more complicated than what you would be dealing with.

I can see why your doctor responded the way he did. The first is a relatively small gathering and you would be traveling alone so not exposed to viruses as on a bus, train or plane. The second is similar where you would be traveling with a few people, perhaps, and where the number of people at your destination would be small.

The third is traveling with a lot of other people in an environment known for the spread of viruses and bacteria.

My oncologist always told me not to get sick when I was on chemo.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

NHMike
Posts: 2309
Joined: Fri Jul 21, 2017 3:43 am

Re: Adjuvant chemo or not / Decision time for adjuvant chemo

Postby NHMike » Sat Sep 07, 2019 10:36 am

weisssoccermom wrote:I was a stage IIA...rectal cancer and I did chemo. Now, I will say that I did NOT do the oxi. Personally, I don't know what your onc is talking about that XELOX is brutal. He may be referring to the fact that with XELOX being given it every THREE weeks as opposed to every TWO weeks with Folfox, the OXI dose is quite a bit higher and the side effects from that may be more severe. However, many people on this board have done it without complaint.

I'd like to address the Xeloda component. I know of many people who have taken or are taking Xeloda while covered with Medicare and yes, it DOES cover it. It does NOT cover it under the traditional Medicare prescription plan....Part D I believe BUT......it is covered under the Medicare Part B plan. It's not considered a 'prescription' like a statin or antibiotic would be. It falls under the coverage for the cancer treatment. Please check into that. My friend who has pancreatic cancer, is on traditional Medicare just picked up his pills and they were covered. Other members of this board, covered under Medicare have also used Xeloda and it was covered.

You could always do the Xeloda and opt out of the oxi. Honestly, the 5FU or Xeloda is the drug that does most of the work and I didn't have any problems with tolerating it. Not sure what your onc is talking about but I certainly would, at the very least, consider doing just Xeloda or 5FU.


I'm more on the side that XELOX is brutal. Particularly if you're in a place where the temperature gets under 30 degrees. I think that everyone that I've seen take it gets many of the side-effects. There is considerable research on Oxaliplatin toxicity and side-effects.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

weisssoccermom
Posts: 5957
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Adjuvant chemo or not / Decision time for adjuvant chemo

Postby weisssoccermom » Sat Sep 07, 2019 10:45 am

That was my point....I think it is the OXI that is the problem....not the Xeloda. I'm surprised that the onc didn't suggest just doing the Xeloda or 5FU.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

Beckster
Posts: 397
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Adjuvant chemo or not / Decision time for adjuvant chemo

Postby Beckster » Sat Sep 07, 2019 11:42 am

weisssoccermom wrote:That was my point....I think it is the OXI that is the problem....not the Xeloda. I'm surprised that the onc didn't suggest just doing the Xeloda or 5FU.


I agree with you! My onc did start me on Xelox, because of my age and 2 high risk features, but I could not take the oxi. In Xelox vs Folfox, the oxi is given at a higher dosage... 130mg in Xelox vs 85mg in Folfox. Maybe jmn will chime in...he went to MSK and had T4 with LVI and I think PNI...they gave him just Xeloda.

MD Anderson protocol
CapeOx (XELOX)●Oxaliplatin 100-130 mg/m2IV on Day 1●Capecitabine 850-1000 mg/m2PO twice daily for 14 days●With or without bevacizumab 7.5 mg/kg IV●Repeat every 3 weeks●With or without panitumumab*9 mg/kg IV every 3 weeks

mFOLFOX ●Oxaliplatin 85 mg/m2IV over 2 hours on Day 1●Leucovorin 400 mg/m2IV over 2 hours on Day 1●5-fluorouracil 400 mg/m2IV bolus on Day 1, then 5-fluorouracil 2400 mg/m2over 46 hours IV continuous infusion●With or without bevacizumab 5 mg/kg IV●Repeat every 2 weeks●With or without panitumumab* 6mg/kg IV every 2 weeks or cetuximab

Below is a link that might help compare the two with side effects and toxicity
https://ascopubs.org/doi/abs/10.1200/jc ... ppl.e14556

Hope this helps!
57/F
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3 (path) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction
1/2/17 to 6/9/17- Xeloda monotherapy
6/17,12/17,6/18,12/18 6/19 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6
Clear Colonoscopy 10/17, 11/19 :D

hwr
Posts: 7
Joined: Wed Aug 28, 2019 7:19 am

Re: Adjuvant chemo or not / Decision time for adjuvant chemo

Postby hwr » Mon Sep 09, 2019 7:08 pm

I have decided if I do take adjuvant chemo for colon stage 2A I will ask oncologist to allow me not to take the usual infusion and just take pills for 12 weeks (4 cycles)
I’ve read here that some say it’s not as bad without the Oxaliplatin, but I wonder what that would do the effectiveness of the usual combo. Also, I’ve read 1250mg twice daily is norm, but see in some studies it has been reduced to 1000mg and better tolerated.
I want to do something to reduce the odds of recurrence, even if a little, but without severely limiting my abilities for 3 months, and certainly not long term negative effects. I’m looking for a compromise treatment—proactive, but less toxic. Maybe they’re mutually exclusive.
What might I expect in side effects from the treatment as modified?
I’d love to hear your thoughts.

weisssoccermom
Posts: 5957
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Adjuvant chemo or not / Decision time for adjuvant chemo

Postby weisssoccermom » Mon Sep 09, 2019 11:13 pm

The Xeloda (pills) or the infused 5FU (if you chose to go that route) is the drug that does MOST of the work anyway. For a stage II, studies have shown that the oxi adds only an extra 2-3%...IMO, not enough to warrant taking it. You have to make that decision.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

NHMike
Posts: 2309
Joined: Fri Jul 21, 2017 3:43 am

Re: Adjuvant chemo or not / Decision time for adjuvant chemo

Postby NHMike » Mon Sep 09, 2019 11:45 pm

The vast majority of the side-effects come from the Oxaliplatin.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Rock_Robster
Posts: 375
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Adjuvant chemo or not / Decision time for adjuvant chemo

Postby Rock_Robster » Tue Sep 10, 2019 12:54 am

I usually err on the side of doing adjuvant chemo, but I’m beginning to realise there’s a structural bias with asking opinions on this of a public group. No-one wants to be complicit in you not doing chemo and having a recurrence. But also no-one here has to deal with the side effects and late effects of your chemo. So in a way for us, it really is an ‘easy’ choice.

However most of us can also put ourselves in your shoes. The challenge here is that it is often coloured by our own experience - those who sailed through FOLF/XELOX will likely say to do it for the peace of mind. Those who struggled with nausea, fatigue and hand/foot syndrome - and may still be dealing with permanent neuropathy and enduring fatigue - may feel differently.

I’m sorry this probably hasn’t helped at all, but it comes back to the point that it really is a very personal decision. And best of luck with it.

Rob
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

CF_69
Posts: 82
Joined: Sat Dec 22, 2018 9:44 pm

Re: Adjuvant chemo or not / Decision time for adjuvant chemo

Postby CF_69 » Tue Sep 10, 2019 1:00 am

Xeloda dosage is calculated according to your body composition, at least initially.

I was taking 5000 mg a day for adjuvant. Less while doing the chemoradiation. 3600 mg if memory serves me here.

One doctor put it like this: chemo is more like a dial than an on / off switch.

As for side effects, I had some occasional mild nausea, bowel frequency (soft but not diarrhea). Actually I tend to be on the constipated end of the spectrum, so it kind of kept me regular.

I always say it wasn’t fun, but it wasn’t terrible either. I’m happy to be finished with it, hopefully forever.
47 year old male
Distal sigmoid near rectosigmoid junction adjacent to upper rectum
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0 after pathology
CEA:
Dec 2018 - 1.9
September 2019 - 2.5
Xeloda / radiation x 25
Laparoscopic LAR April 2019
0 of 12 nodes
Stage 2A
4 cycles of adjuvant Xeloda
MRI on liver for 2mm hypodensity not suspicious.
Clear CT - September 2019

hwr
Posts: 7
Joined: Wed Aug 28, 2019 7:19 am

Re: Adjuvant chemo or not / Decision time for adjuvant chemo

Postby hwr » Tue Sep 10, 2019 5:46 am

weisssoccermom wrote:The Xeloda (pills) or the infused 5FU (if you chose to go that route) is the drug that does MOST of the work anyway. For a stage II, studies have shown that the oxi adds only an extra 2-3%...IMO, not enough to warrant taking it. You have to make that decision.


I've been told that oxi and zeloda together might reduce my odds of recurrence by 5%. I'm trying to understand the "oxi adds only an extra 2-3%" in your reply. What does eliminating oxi do to my 5% benefit? Take it down by 2-3%, or down to 4.85% benefit, or take it down from 5% to 2-3% total benefit?

weisssoccermom
Posts: 5957
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Adjuvant chemo or not / Decision time for adjuvant chemo

Postby weisssoccermom » Tue Sep 10, 2019 9:07 am

The doctors tend to give patients RELATIVE benefit as opposed to ACTUAL benefit. What I am stating is that the ACTUAL benefit of Oxi...IN THE STAGE II scenario with no negative prognostic factors.....is a small 2 -3%. When I was going through chemo, my onc recommended against the oxi....based on the fact that I was a stage IIA. He said the benefit wasn't worth the risk of the very real side effects.....many of which are long lasting or permanent. I saw this with all sincerity....I was thankful that I was super sensitive to the oxi (not sure it was an actual allergy). I had ONE infusion of it and had terrible, long lasting side effects. Three weeks later when it was time to get the next infusion, I was still heavily feeling the side effects of the oxi. My onc said...it wasn't worth it to risk permanent neuropathy. He told me one more time that the benefit of the oxi just wasn't that great so I stopped.

You have make that decision for yourself but just know that the Xeloda (or 5FU) is the drug that does most of the work.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

hwr
Posts: 7
Joined: Wed Aug 28, 2019 7:19 am

Re: Adjuvant chemo or not / Decision time for adjuvant chemo

Postby hwr » Tue Sep 10, 2019 9:45 am

I suppose what I'm trying to say is taking the combined oxi/zeloda for a slight benefit of ~5% reduction in my risk of recurrence seems unwise to my oncologist, wife, and friends who all believe the side effects will be likely reduce the quality of life both temporarily and to some extend permanently. I'm not in agreement with them on that yet. If I should have a recurrence I'd like to say to myself I tried a reasonable adjuvant approach.
If eliminating the Oxi reduces the benefit from 5% to half that, then the answer is clearly no to chemo. If it only reduces the benefit from 5% to say 4%, with fewer side effects, then I still have a decision to make.

CF_69
Posts: 82
Joined: Sat Dec 22, 2018 9:44 pm

Re: Adjuvant chemo or not / Decision time for adjuvant chemo

Postby CF_69 » Tue Sep 10, 2019 10:10 am

I don’t have a link to the information, but my oncologist showed me some study on his computer that had line graphs that were virtually identical for 5FU alone vs FOLFOX.

He then showed me another study that found that 3 months of treatment was as effective as 6.

I wish I could remember in greater detail, but that was the gist of it.

He told me that I have about a 15% statistical chance of recurrence without doing any chemo. The 3 months of Xeloda is supposed to give me another 2-3%, so theoretically lowering that to 12-13%.

To me the 2-3% is worth doing the Xeloda monotherapy. If my options were no chemo or FOLFOX, I would have had a much harder decision to make, but I probably would have gone ahead with it in spite of the side effects.

I would imagine that your oncologist would know about, or be able to find the studies I mentioned, and I can’t see any reason why you couldn’t do Xeloda alone.

It is your decision. I already made mine, and I don’t regret it.
47 year old male
Distal sigmoid near rectosigmoid junction adjacent to upper rectum
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0 after pathology
CEA:
Dec 2018 - 1.9
September 2019 - 2.5
Xeloda / radiation x 25
Laparoscopic LAR April 2019
0 of 12 nodes
Stage 2A
4 cycles of adjuvant Xeloda
MRI on liver for 2mm hypodensity not suspicious.
Clear CT - September 2019

hwr
Posts: 7
Joined: Wed Aug 28, 2019 7:19 am

Re: Adjuvant chemo or not / Decision time for adjuvant chemo

Postby hwr » Tue Sep 10, 2019 10:39 am

I was told basically the same by my oncologist, that my chances of recurrence were about 15-20% if I didnt take chemo, maybe 5% less than that with chemo, although he said there were studies that disagreed with that, and failed to show any benefit. The majority do think there is benefit so it's the standard of care and he was offering it, not recommending it. If he were faced with the decision he wouldnt do chemo he said. At that meeting he offered 6 months Folfox or 3 months Xelox, with equal benefit, although he hates the Xelox option. We didnt talk about eliminating the Oxi from Xelox.

He emphasized that the 15-20% is based on a "herd" of 100 people with all sorts of illnesses and health conditions. including stage IIA. Some can't blow out a match, whereas others such as me are in good shape otherwise, few health issues, exercise daily, dont smoke, non diabetic, good BMI, etc. who he thought would likely do better than the overall 15-20% recurrence.


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