Just got post-surgery results and they aren't good

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

Re: Just got post-surgery results and they aren't good

Postby TXLiz » Mon Jun 05, 2017 1:19 pm

My onc said pills have more side effects for most people.

Of course it depends on the person, and their reaction.

I have learned to trust my onc. I still get a second opinion at MDA, but I haven't found a difference in my diagnosis or treatment between the 2. My local onc seems more cautious because I see him more and we have developed a doc patient relationship, whereas MDA is a once in awhile visit. He knows I try to educate myself, and look at my results and ask questions. It seems perhaps many of his patients do not...he often has the questions he thinks I will ask ready, and laughs when I do indeed ask them.
Throughout treatment, you'll have to trust someone. I hope you find that doctor soon. Best wishes with the treatment, whatever you choose. It's so confusing and complicated...and emotional. Very difficult to deal with, to put mildly.
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

Beckster
Posts: 438
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Just got post-surgery results and they aren't good

Postby Beckster » Mon Jun 05, 2017 2:04 pm

mpbser wrote:Update:

So, we met with husband's oncologist on Friday. As expected, she first recommended FOLFOX which husband was not very happy about. The idea of a port and pump terribly disturbs him. He asked if there were any alternatives and oncologist spoke about Xeloda. We then asked if one was medically preferable over the other and we were told no. The oncologist said there were no comparative studies, but there was at least one very recently cited here in this forum. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2409640/ Based on this, and the fact that we have received forewarning here about how some doctors lean towards infusions because they are more lucrative for their practice than pills, I don't entirely trust this oncologist. My husband also remains skeptical and wary.

Because the liver biopsy came back positive, the next step is for him to have a liver MRI and a full-body PET. The oncologist will be scheduling them for mid to late June, four weeks post-surgery. He may need liver surgery or the alternative radiofrequency ablation (RFA). As soon as the MRI and PET results are available, we will be going to Dana Farber for a second opinion.

My only concern right now is the MRI. He has "40-80" metal staples in his abdomen which, although are mostly titanium, could contain a small percentage of nickel. I had read that MRIs of patients with internal staples should not be done until at least 6 weeks post-surgery. Since husband is diabetic and healing slower than the average patient, I would think that 8 weeks would be the earliest. However, his oncologist dismissed my concerns.

I will start a new thread for the staple issue so the topic subject catches attention.



I have been on Xeloda for 6 months and finish in four days and I go to MD Anderson. If I had to do it again, I would pick the pill over the infusion. Chemo comes with side effects, but the side effects with Xeloda was doable and it did not interfere with my life. I told my doctor what I wanted. They work for us! If you have any questions about Xeloda, feel free to email me!

Best of Luck
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
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic
1/2/17 to 6/9/17- Xeloda
6/17,12/17,6/18,12/18,6/19,12/19,12/20,12/21 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 12/19 2.8 6/20 3.0 12/20 2.7 6/21 2.9,[color=#000000]12/21 2.7[/color]
Clear Colonoscopy 10/17, 11/19,11/21 :D

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LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Just got post-surgery results and they aren't good

Postby LPL » Mon Jun 05, 2017 4:54 pm

Hi mpbser/CV,

My hubby had the Folfox (that includes the 5-FU pump). He had no problem with the port or the pump (his was silent), and a nurse came to our house and disconnected it so No extra trips to the hospital were needed. Also we did not know enough at the time to question taking the pill instead of the pump...
I had read though a recommendation for Patients that if being the one who mostly was the driver of the car - to ask about getting the port on the right side = the safety belt will not be a problem.

Odd that your Onc said that there had not been any comparing studies. As I could see the study you linked to is from 2004. I found another paper, a review article from 2012 titled:
Capecitabine versus 5-fluorouracil in colorectal cancer: where are we now? https://link.springer.com/article/10.1007%2Fs12156-011-0074-3
(and I presume that review include this study from 2010
Quality-of-life findings from a randomised phase-III study of XELOX vs FOLFOX-6 in metastatic colorectal cancer. https://www.ncbi.nlm.nih.gov/m/pubmed/19920832/
where the Conclusion is
" XELOX has a similar QoL profile, but seemed to be more convenient in terms of administration at certain time points and reduced time lost for work or other activities compared with FOLFOX-6."

Good Luck deciding what to do/choose.
Kind Regards /L
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a 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->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Just got post-surgery results and they aren't good

Postby mpbser » Tue Jun 06, 2017 5:38 am

Thanks for all the comments!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Just got post-surgery results and they aren't good

Postby mpbser » Fri Jun 23, 2017 10:24 am

So, we had an appointment with husband's oncologist yesterday and I was rather taken aback by her new treatment recommendation.

At the previous appointment, about four weeks ago, she had recommended Folfox and, upon being asked if there was a non-IV alternative, she had offered Xeloda. She could not provide any information regarding one's effectiveness/safety/overall profile over the other.

NOW, all of a sudden, she recommends Xelox (Xeloda plus oxaliplatin which is an IV infusion) and is claiming that Xeloda is "inferior." She did not define what inferior means, and I had to leave the appointment early to attend a meeting with a client, so I had no opportunity to ask. However, she did cite ASCO during the conversation, stating something very vague about recent new guidelines. I have looked at ASCO's website briefly but have yet to find the information to which she was referring.

We are looking forward to the second/third opinions at Dana Farber and Mass General. We have many questions to ask and are particularly interested in an explanation how a treatment recommendation can change so dramatically within just a few weeks with no change in staging or other factors that would impact treatment.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Just got post-surgery results and they aren't good

Postby mpbser » Fri Jun 23, 2017 1:29 pm

I just did some follow up research at asco.org, trying to find a citation for the information the oncologist gave us yesterday. (She claimed that the data was provided at a recent ASCO conference.) I have found nothing that supports her claims. Per my husband's request, I called her office and left a voicemail requesting the citation. I have a feeling there will be no response.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

Beckster
Posts: 438
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Just got post-surgery results and they aren't good

Postby Beckster » Fri Jun 23, 2017 3:05 pm

[quote="mpbser"]So, we had an appointment with husband's oncologist yesterday and I was rather taken aback by her new treatment recommendation.
NOW, all of a sudden, she recommends Xelox (Xeloda plus oxaliplatin which is an IV infusion) and is claiming that Xeloda is "inferior."


I do not understand. If she is recommending Xelox, she is recommending Xeloda, so if it is "inferior", why would she recommend this? I tried to find information on the 2017 ASCO conference from June. This was all I could find... https://am.asco.org/scot-capox-3-months ... tal-cancer

Good Luck in researching and let us know what you find
Beckster
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
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic
1/2/17 to 6/9/17- Xeloda
6/17,12/17,6/18,12/18,6/19,12/19,12/20,12/21 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 12/19 2.8 6/20 3.0 12/20 2.7 6/21 2.9,[color=#000000]12/21 2.7[/color]
Clear Colonoscopy 10/17, 11/19,11/21 :D

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Just got post-surgery results and they aren't good

Postby MissMolly » Fri Jun 23, 2017 4:38 pm

mpbstr:
I do not know if the oncologist that you saw yesterday has an ulterior motive or profit motive underlying her abrupt change in treatment recommendation. I would hope not. But I do know that physicians, as with other professions, hold personal biases and belief systems that shape their recommendations and courses of action. It is part of human nature.

I think you will find that your husband will do best with an oncologist where the relationship seems to "click" at an intuitive level, where there is a congruence of interpersonal "fit."

Advocate for your husband. Ask firm questions. But I urge you to step cautiously in presenting with an overly confrontational or adversarial personality style.

There will be times when you will need/want one of your husband's physicians to go above and beyond standard protocol (ex. soliciting inquiries with colleagues, obtaining insurance authorization for a procedure or imaging study, fast-tracking an out of network referral). A patient-provider relationship based on mutual trust and respect benefits all parties involved. A win-win.

I hope your upcoming consultations at Mass Gen and Dana Faber provide insight and clarity to the questions that you have.
- Karen -
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

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Jacques
Posts: 678
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Just got post-surgery results and they aren't good

Postby Jacques » Fri Jun 23, 2017 4:44 pm

mpbser wrote:I just did some follow up research at asco.org, trying to find a citation for the information the oncologist gave us yesterday. (She claimed that the data was provided at a recent ASCO conference.) I have found nothing that supports her claims. Per my husband's request, I called her office and left a voicemail requesting the citation. I have a feeling there will be no response.

I don't know if this is what you're looking for, but I found this on the asco.org website. It is an 11-page article found on pages 246-256 of the 871 page book of proceedings for the most recent ASCO conference.

Chloe E. Atreya, Rona Yaeger, and Edward Chu, “Systemic Therapy for Metastatic Colorectal Cancer: From Current Standards to Future Molecular Targeted Approaches”, 2017 ASCO Educational Book, pp 246-256

On page 249 of the above-mentioned article, there is a section entitled, “Current treatment options for mCRC”.
This section makes reference to a footnote #25:
“In 2017, there is now a wide range of treatment options for the first-line therapy of mCRC [25]...”

Footnote #25 refers to Version 1.2017 of the NCCN Guidelines for Colon Cancer.

It is in this article and the related footnote where the current options are explained, including FOLFOX or XELOX recommended for use in the current standard of care for first-line mCRC colorectal cancer therapy.

Tdubz
Posts: 152
Joined: Sun May 07, 2017 11:01 am

Re: Just got post-surgery results and they aren't good

Postby Tdubz » Fri Jun 23, 2017 5:51 pm

Could she just be referring to xeloda by it self being inferior to xeloda and oxy the same way 5FU would be inferior to f5u and oxy?

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Just got post-surgery results and they aren't good

Postby mpbser » Fri Jun 23, 2017 6:53 pm

Thanks, Jacques. I will look at that.

Tdubz, maybe.

The oncologist called today and told my husband that she has literature for me to pick up that will help answer my concerns. I will get the documents Monday and will post an update when I can.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

mike1965
Posts: 118
Joined: Mon Jan 25, 2016 11:07 pm

Re: Just got post-surgery results and they aren't good

Postby mike1965 » Tue Jun 27, 2017 1:47 am

My oncologist offered xeloda with Oxi or 5fU with Oxy. He told me there was not difference in effectiveness. I chose 5FU with Oxy because I would rather be on the pump for 48 hours instead of taking pills each day. I do not like to take pills. The Oxy was the hard part of the treatment. The Oxy was tough on my body and mind. My neuropathy from the Oxi really kicked in after my last chemo session last September. I am still battling the neuropathy but it is getting better. I pray all goes well with the treatment.
Colonoscopy 09/06/15 Doctor removed polyp
DX - Rectal cancer 09/10/2015 T1M0N0
Surgeon recommended wait and see approach 09/2015
Tumor board recommended LARs Surgery 10/2015
Oncologist and PCP recommended LARs Surgery 11/2015
Seeking 2nd opinion from another Surgeon 01/2016
Having Sigmoidscopy on 02/01/16.
Figured out treatment 02/2016
LARS Surgery 03/2016
Stage 3A T1 N1C M0
Chemo Folfox to begin 04/18/16

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Just got post-surgery results and they aren't good

Postby mpbser » Tue Jun 27, 2017 6:01 am

Hi Mike1965,

My husband doesn't mind taking pills if it means he doesn't need a pump.

Yes, that's what I have read on this board, that the oxi is what causes severe side effects due to its toxicity. That's exactly why I was taken aback by the sudden switchero from Xeloda to Xeloda/Oxi (Xelox).

Husband and I will be at the hospital tomorrow for his colonoscopy so I will be stopping by the Cancer Center then to pick up whatever the oncologist has copied for me.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

jdepp
Posts: 488
Joined: Sun Sep 28, 2008 7:53 pm

Re: Just got post-surgery results and they aren't good

Postby jdepp » Tue Jun 27, 2017 7:14 am

I read this the same way as Tdubz. I think the oncologist means Xeloda + oxaliplatin is more effective & cytotoxic than just Xeloda. I agree.

Incidentally, I've had many rounds of oxaliplatin. After an initial presentation with liver mets and 19 infected lymph nodes, six rounds of it helped get me to NED.

I'd suggest going for the stronger stuff to start & saving milder options for later.
Colon dx 08 @ 41 Poorly diff. 12+ liver mets, 19/28 LN
Colon rsx /14 x Folfox-Erbitux 08-09
PVE / Liver rsx 09
Lung & LN mets 10
Folfiri, Xeloda, Avastin 10-13
Xelox, Erbitux, UFUR, TS-1, Oxi, Lonsurf 14-16
Stivarga & TIL trial 16
Brain lesion, RO688 trial 18

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Just got post-surgery results and they aren't good

Postby mpbser » Wed Jun 28, 2017 8:35 am

I am at the hospital waiting for husband's colonoscopy #2 (looking for additional adenocarcinoma in a different part of his colon as the last colonoscopy was incomplete due to left hemi tumor). I picked up the literature that his oncologist had for us and just read it.

Absolutely nothing in here supports her revised recommendation for Xelox over Xeloda. Similarly, nothing in here supports a conclusion that Folfox should be preferred over Xelox or Xeloda alone. No data is presented that supports the categorization of Xelox as "inferior" as she claimed.

What IS shown in the literature:

Two identically designed randomized trials have shown similar efficacy for Xelox Monotherapy compared to IV FU/LV for the first line treatment of mCRC. In one of the trials, Xelox was associated with a modestly but significantly higher response rate than FU/LV but similar median time to tumor progression and overall survival. ...Xelox alone is an inappropriate treatment strategy for patients who have failed FU-based regimens.

In a different section of the literature:

Xelox/Capox is a reasonable alternative for first line therapy of mCRC patience for whom ambulatory infusional FU therapy using a pump is not visible or desired. The available data suggest that Xelox has approximately similar antitumor efficacy, but there is a possibility of more toxicity as compared with Folfox. The article goes on to further compare Xelox and Folfox.

That's all there is in this 50 page article as the rest deals with completely different therapies, e.g. bevacizumab, etc.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED


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