Maintenance Chemo or No ?

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Achilles Torn
Posts: 68
Joined: Fri Dec 16, 2016 2:41 pm

Maintenance Chemo or No ?

Postby Achilles Torn » Fri Jul 28, 2017 4:38 pm

Hi all,

I'm reaching out because I am at a crossroads and value the opinions of many users here. I am Stage 4 with distant lymph node spread- details you can see in my signature (spread was only diagnosed via PET). I completed 12 rounds of FolFox in June, had a 5 week break and then a PET scan this week (2 previous CT's showed significant shrinkage). I had been hoping for some reduction in mets to allow for surgical removal of some infected nodes, however, I met with my Onc yesterday who reported the PET scan was totally clear. He said this was unexpected and gave me the choice of continuing the break with monthly CT scans until cancer re-appears, or maintenance chemo of 5FU and Bevicuzimab in 2 week cycles. He told me there is no scientific evidence supporting either choice and this is the first time he hasn't been confident on a treatment plan with me. He said if it were him he would continue the break....but he honestly didn't know what was best.

Having read many anecdotes here I am leaning towards continuing chemo as I think it is far more likely my cancer will grow faster without it... but am I just too fearful after being touched by the stories of others who went before me ? Would it be worth having at least 3 months treatment free for the risk of rapid growth ? Is it better to let my body fully recover for the next big treatment ? I just don't know.

I don't mean to sound ungrateful for where I am now, I am, but I try to follow the advice of someone I read early on here to not get too high on the "ups" nor to low on the "downs" (might have been BrownBagger). I know there will be downs in the future...just not sure when.

I should point out I did relatively well on FolFox, just average fatigue, a little clustering, and some lasting neuropathy from the Oxy in feet and fingers (funnily Lhermitte just started today)....but I felt no different when they added Avastin and I think I can tolerate the 5FU well (knocks on wood)

Any thoughts would be greatly appreciated.

Thanks
AT
40 yo Male. BC Canada Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX Commenced Jan 9/2017 - Avastin(Bev) added after round 1.
June 2017 Dose Reduction on Round 11 due to Neuropathy.

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GrouseMan
Posts: 717
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: Maintenance Chemo or No ?

Postby GrouseMan » Fri Jul 28, 2017 5:03 pm

My wife's situation was probably worse than yours but she continued with every two weeks 5-FU and Avastin for about 6 months and then they moved her to once every three weeks for another 9 I think it was. She was pretty stable for almost 18 months then she started to see progression and they put her on 5-FU, Irinotecan, Avastin, and that seemed to give her another few months. Next they tried a trial combo of just Irinotecan, Avastin and Erbitux. That also slowed things down I think for a while... All in all my wife who at diagnosis already had mets to her liver and spleen, managed to make it almost 4 years. What got her was peritoneal tumors that were hard to see on CT eventually started pressing in her colon and ureter, The Liver tumors had calcified pretty well during the FOLFOX+ Avastin treatment, and her spleen mets disappeared. I suspect you will do much better than that as it appears you didn't have as much spread. My wife managed Chemo very well. Almost no side effects or at worst mild ones. She really was never off some form of chemo for almost the whole time. At the end an experimental MAB for a couple of months that didn't really help any.

It you can tolerate it and perhaps have some good blood markers as well that they can monitor in addition to the PET and CT scans I's go with the maintenance therapy

Good Luck

GrouseMan.
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

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betsydoglover
Posts: 870
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Maintenance Chemo or No ?

Postby betsydoglover » Fri Jul 28, 2017 5:18 pm

Based on my experience, I would continue chemo. BUT, I would do Xeloda (much easier - no pump) plus Avastin. Maybe after a few rounds discontinue Xeloda and stick with Avastin only.

Good luck (it's great to have good results now).
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
6 cycles Xeloda + Avastin,
NED (PET every 3 mo)
Avastin only 10/09-5/11

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Maia
Posts: 2397
Joined: Fri Aug 24, 2012 8:00 am

Re: Maintenance Chemo or No ?

Postby Maia » Fri Jul 28, 2017 5:28 pm

Instead of nothing, I would do capecitabine (LOW dose, metronomic dose) + celecoxib (XCEL or ADAPT) as Sophy is doing viewtopic.php?f=1&t=57644&p=454418 Total oral regimen, ideally, it should be imperceptible. Just because you asked for opinions : )

Achilles Torn
Posts: 68
Joined: Fri Dec 16, 2016 2:41 pm

Re: Maintenance Chemo or No ?

Postby Achilles Torn » Fri Jul 28, 2017 6:59 pm

Thanks all. This is excellent feedback and exactly what I was looking for.

Grouseman, I was saddened to read about your wife and it is very kind of you to continue to help us out here. Your posts are valuable and informative. Your wife's story is one I have read which does swing me to the maintenance side of the fence. There seems to me longer term success with continued Maintenance chemo.

Thanks Maia- I had forgotten about ADAPTI will bring it up with my oncologist. I'm not sure if they see it as an option at the BC Cancer Agency but it never hurts to ask. I do feel a little differently about my situation as it comes through chemo rather than surgery (aka I don't 'trust' Chemo as much) so still lean towards Avastin + 5FU (if that makes sense).

Betsy I think I'd like to switch to pills and either way, will also ask about that...I think I was a little stunned by the news and all the rational things I should have asked flew out of my head.

AT
40 yo Male. BC Canada Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX Commenced Jan 9/2017 - Avastin(Bev) added after round 1.
June 2017 Dose Reduction on Round 11 due to Neuropathy.

Basil
Posts: 128
Joined: Thu Mar 16, 2017 12:33 pm

Re: Maintenance Chemo or No ?

Postby Basil » Fri Jul 28, 2017 7:12 pm

Achilles,

Wishing you the best and congrats on your progress! This is a selfish question but do you mind sharing how you were diagnosed with stage iv through PET? I'm stage iii with (obviously) no evidence of mets through two rounds of cts/MRIs at Baylor College and MDAnderson. I haven't had a PET yet and it frankly scares me to death, wondering if there's something there they just haven't found yet.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ostomy
pathological complete response
NED
adjuvant chemo cancelled
reversal scheduled 9/25/17
(praying I don't have to add on from here)

Achilles Torn
Posts: 68
Joined: Fri Dec 16, 2016 2:41 pm

Re: Maintenance Chemo or No ?

Postby Achilles Torn » Fri Jul 28, 2017 8:11 pm

Hi Basil,

Seeing others 'selfish' questions answered has provided me with heaps of useful info so don't worry about it. My cancer was found during a routine surveillance scope (long story) and I had a CT same day to prep for colon surgery the next. The Dr. told me the CT was clear except for a few visible lymph nodes ('LN's') which he assumed were local. After my surgery, my pathology came back with dire results....19/24 Lymph nodes positive, Tumor budding/Deposits, vascular and perineural invasion (basically all bad except for clear margins). From my research both here and elsewhere I knew this was very bad and sometimes CT's don't catch everything so I pushed for PET scan. The PET scan showed many enlarged lymph nodes with high FDG uptake spreading from my resection site up to the Para-aortic region. Although I was never biopsied (tough locations) the nature of spread and FDG uptake meant this was about 99% certain to be mets making me stage 4 (important because it meant Avastin (Bev) was included in my treatment).

All that being said when I got my medical records and read the initial CT scan report it commented on visible lymph nodes over 1cm distant from the tumor, which I now know from scientific papers should have been suspected as Mets all along.

Sorry that was long winded but I would take away this ----

1 - My initial CT showed nodes which should have been suspicious all along...if you don't have any visible LN's from CT or MRI this is good.
2 - From my reading here CT missing things a PET scan picks up is often related to lymph node spread - See 'Tytiff', 'dorat', or 'Alessandria''s posts for examples (or was it Alexandria ?) BTW they all seem to have had good outcomes :)
3 - My initial Pathology was very bad and indicative of lymph node spread, PET or No.
4 - I never had an MRI which is an excellent diagnostic tool in itself.

No scan is infallible or certain and a PET certainly picks up different (not necessarily better) information. If you have a clean CT and MRI I would take that as face value, unless like me you have information that makes you think otherwise.

The chances you have mets are low, but it is never wrong to try and get more information from another source (like a PET).

Hope that answers it, I kinda rambled.

AT
40 yo Male. BC Canada Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX Commenced Jan 9/2017 - Avastin(Bev) added after round 1.
June 2017 Dose Reduction on Round 11 due to Neuropathy.

Basil
Posts: 128
Joined: Thu Mar 16, 2017 12:33 pm

Re: Maintenance Chemo or No ?

Postby Basil » Fri Jul 28, 2017 8:20 pm

I appreciate your response. Thanks. I will eventually have a PET and, even though things look good, will continue with low grade worry.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ostomy
pathological complete response
NED
adjuvant chemo cancelled
reversal scheduled 9/25/17
(praying I don't have to add on from here)

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CRguy
Posts: 9133
Joined: Sun Feb 10, 2008 6:00 pm

Re: Maintenance Chemo or No ?

Postby CRguy » Sat Jul 29, 2017 12:10 am

Achilles Torn wrote:Hope that answers it, I kinda rambled. AT


Hey buddy :
you WILL miss more for not LOOKING .. than not knowing !
SO ramble on my friend ! and keep LOOKING !!!!!!

In our world, MORE info is better = ALWAYS !

My personal take = my sit rep = I had pseudoadjuvant chemo after resection of a "clean" lung met
it was controversial BUTT I chose FOLFOX x 12 cycles after having had only Xeloda for neoadjuvant chemorad and post-op adjuvant for the primary resection.

One note ( BC / BCCA related ) depending upon who you may have extended health care with,
you may be faced with out of pocket $$ for Xeloda.
I have bitched about it here and still hate Screwed Blue Cross :twisted: , BUTT got some coin back from Roche patient assistance.
IF it is not an option with BCCA through BC Medical .... prepare to pay ( I would and I did, and would do so again )

Keep us in the loop and PM me anytime

Cheers and Harmony
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing NONrandomized UNcontrolled experiment with N=1 !
Review of my Journey so far

rp1954
Posts: 1161
Joined: Mon Jun 13, 2011 1:13 am

Re: Maintenance Chemo or No ?

Postby rp1954 » Sat Jul 29, 2017 2:36 am

If you are still KRAS/BRAF wild (CA199 and LDH [~LDH4/5] are still low like earlier?), that sounds good. We seem to deal with several populations, but I'm not as studied on the wild ones. Largely we were able to cut the worst KRAS wild survivors out 6 years ago, and some part of our program has been successful with oral chemo+celecoxib and supplements suppressing CEA surges (Kras wild tends to show as CEA drops with Erbitux) over time by revving various immune components.

I'd probably be looking at your MCV and CEA history more closely if they're not too noisy from cyclical chemo. Trying out the 2010 Life Extension supplements (including things like PSK and plainer supplements) without worrying about the cimetidine but perhaps doing WGP and Prendergast's high vitamin D3/K2 because that roughly corresponds to what suppressed CEA surges with the oral chemo and celecoxib. For us, chemo is not so low dose (daily averaged toward the total cyclic 5FU dose) as much as we suppress side effects with various nutrient strategies.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

NHMike
Posts: 180
Joined: Fri Jul 21, 2017 3:43 am

Re: Maintenance Chemo or No ?

Postby NHMike » Sat Jul 29, 2017 3:37 am

CRguy wrote:
Achilles Torn wrote:Hope that answers it, I kinda rambled. AT


Hey buddy :
you WILL miss more for not LOOKING .. than not knowing !
SO ramble on my friend ! and keep LOOKING !!!!!!

In our world, MORE info is better = ALWAYS !

My personal take = my sit rep = I had pseudoadjuvant chemo after resection of a "clean" lung met
it was controversial BUTT I chose FOLFOX x 12 cycles after having had only Xeloda for neoadjuvant chemorad and post-op adjuvant for the primary resection.

One note ( BC / BCCA related ) depending upon who you may have extended health care with,
you may be faced with out of pocket $$ for Xeloda.
I have bitched about it here and still hate Screwed Blue Cross :twisted: , BUTT got some coin back from Roche patient assistance.
IF it is not an option with BCCA through BC Medical .... prepare to pay ( I would and I did, and would do so again )

Keep us in the loop and PM me anytime

Cheers and Harmony
CRguy


Generic Xeloda is class 3 on my insurance plan which means that it has the highest deductible (I guess that's because it's "optional" compared
to 5 FU infusions). It cost me $180 for the first batch of pills (4 weeks) and it will cost another $180 for the second batch. That's just a second
datapoint.
Mike in NH: Rectal Bleeding biopsy June 23, Diagnosed Stage 3B rectal cancer late July 2017 via MRI.
T3, N1b, M0.
Started Xeloda + Radiation 07/31/17, to continue until 09/07/17.
CEA before treatment: 2.7. CEA after 14 treatments 1.9.

WarriorSpouse
Posts: 69
Joined: Tue Aug 16, 2016 9:02 pm

Re: Maintenance Chemo or No ?

Postby WarriorSpouse » Sat Jul 29, 2017 9:11 am

Hey AT,
Good news to read from you... I have been wondering about you lately and was happy to see things are working.

You and my wife appear to have similar metastasis, so whatever I can share with you I will. Her primary doctor is from Dana Farber in Boston, and they suggests similar to what you described as, "maintenance chemo of 5FU and Bevicuzimab in 2 week cycles."

My wife does a reduced Zeloda maintenance for two weeks on, and then 3rd week off... Each three week cycle starts with an Avastin infusion, after blood work and evaluation with local oncologist from a Mass General Hospital affiliate. We are an hour outside of Boston, MA, so we follow the Dana Farber plan and execute it locally with a MGH Partners affiliate. She gets the best of both worlds, frontline practices (DF) through local care (MGH/Partners).

The rationale from Dana Farber is to keep he cancer cells that are not yet visible at bay... The Avastin does not allow them to grow as long as the drug works. We have learned through the "CAIRO Study," circa 2012 review, that Avastin works better with use of 5FU or Zeloda pills. The study, also showed me a double number of reoccurrence / survival of those on maintenance vs. not. They were small numbers in review group, but I recall 16/8, and as time went on 4/2... I guess some think these difference were negligible, but I see the maintenance group as a double probability of success based on the math in the small subgroup.

Also, in 2012 Avastin was not used immediately or was initially a 6 month program. For my wife, she has been on it for over 2 and a half years now. She did take a break when her numbers showed to do so. She was sick for a month with kid related flu. (She works with young kids in a school.)

Anyway, if you can tolerate a maintenance program, and it will not make you bankrupt in the process, my suggestion would be to do it and adjust as blood work (CEA), how you feel, and scans dictate.

I read a lot from historical posts on CT, around longtime lymph node metastasis survivors who lead me to posts from John603 (and others around him from circa 2008). John spoke very freely of his journey and passed away after almost four years, but he discussed how taking a chemo break may have caused him an expedited recurrence that just got out of hand to stop.

As we all walk along the similar paths of lymphatic metastasis with patients, we must learn from those who were ahead of us. Remember, cancer is unique to each patient, and only you know how treatment feels to you, vs. taking a break... You are a good study and have an excellent grasp of the situation. Situational awareness saves Cops, Fire fighters and Soldiers every day. I see how it can relate to someone on the cancer battlefield as well. As CRGuy says, more information is always better than no information, and this is why we are all here and grateful for the CT forum. I have learned so much here from others.

Continue to be proactive in your care. Offense always is needed to win any game in life, but defense is as necessary too. Maintenance is the defensive line that nobody notices in sports, but was crucial in any team's victory. Play the game of life with purpose and good things will follow. You have already showed your commitment to win by being here and sharing. Keep up the great work!

Be good my friend and best wishes in your progress going forward.
WS
Spouse of wife 47 years old
10/2014, Stage IV Metastatic CC
Lymph node involvement 12/15, w/ positive PET on para-aortic lymph nodes.
5 cm sigmoid tumor resection as well as positive Virchow lymph node.
KRAS mut, Highly Differentiated, Lynch Negative
Folfox and Avastin 1 YR (Oxi for 5 months) NED 05/2015
Zeloda and Avastin since 01/2016
Chemo break 03/2017, back on Zeloda and Avastin 04/2017.

"...Perseverance is not a long race; it is many short races one after the other."
-Walter Elliot

sdino
Posts: 35
Joined: Tue Mar 28, 2017 5:32 pm

Re: Maintenance Chemo or No ?

Postby sdino » Sun Jul 30, 2017 1:09 pm

If I had a redo.... I would take the maint. chemo. My wife seen some shrinkage of tumor and lung mets w/12 rnds of Folfox+Avastin. She then had a 2.5 month chemo break, we enjoyed the summer went to OBX, NC for vaca. Last weeks CT scan revealed progression in Colon/Mets. All shrinkage was evaporated and grew back to original diagnosis in NOV 2016. Good news no new area's of disease. So Monday morning quarterbacking, we would have taken some Maint. chemo, but hey who doesn't want a break from all this BS. Back to chemo or possibly a trial in August.
Caregiver for Wife 52 yrs old
DX: 11/16-CC sigmoid colon 3 cm, Lung Bio-Adenocarcinoma Stg IV
Mets: 1.2 cm now 7 mm lung w/14 other nodules less than 6 mm. 7/17 growth in Mets
MSS, KRAS-mut G12D; TP53;
Completed 12 rounds Folfox/Avastin + Oxi 11/16 to 5/17
8/17 Start Xeloda + Avastin
CT Scans: 11/16; 1/17 lung mets/colon shrinkage; 5/17 colon & lung met shrinkage, 7/17 disease progression lungs/colon
CEA: 16 - 11/16; 4 – 12/16; 0.5 – 2/17; 0.6 - 5/17; 2.6 - 7/17

Achilles Torn
Posts: 68
Joined: Fri Dec 16, 2016 2:41 pm

Re: Maintenance Chemo or No ?

Postby Achilles Torn » Mon Jul 31, 2017 6:44 pm

rp1954 wrote:If you are still KRAS/BRAF wild (CA199 and LDH [~LDH4/5] are still low like earlier?), that sounds good. We seem to deal with several populations, but I'm not as studied on the wild ones. Largely we were able to cut the worst KRAS wild survivors out 6 years ago, and some part of our program has been successful with oral chemo+celecoxib Mand supplements suppressing CEA surges (Kras wild tends to show as CEA drops with Erbitux) over time by revving various immune components.

I'd probably be looking at your MCV and CEA history more closely if they're not too noisy from cyclical chemo. Trying out the 2010 Life Extension supplements (including things like PSK and plainer supplements) without worrying about the cimetidine but perhaps doing WGP and Prendergast's high vitamin D3/K2 because that roughly corresponds to what suppressed CEA surges with the oral chemo and celecoxib. For us, chemo is not so low dose (daily averaged toward the total cyclic 5FU dose) as much as we suppress side effects with various nutrient strategies.


Thanks again rp1954. I've been on a quest for some good blood-work markers since reading your posts early. I didn't get pre-surgery numbers but got one test in pre-chemo with normal CEA and CA19-9. Since then I added things a little liberally (with the initial support of my Onc who shut me down after I ordered ddimer and it caused a commotion) I think FolFox made a bit of a mess of some so I still don't have much to go on. I plan on getting a bunch re-run on my blood test this coming week as I've been off 5 weeks now.

Having good blood indicators would be much more reassuring as a monitoring tool....

If someone can see something in this data please chime in!

CEA (Roche assay) - Jan: 2.8 (pre-chemo), 2.8 Feb: 4.9, 4.7 Mar: 4.2, 3.7 Apr: 3.6, 2.9 May: 2.3, 2.7 June: 2.7, 2.7. July 2.8 (off Chemo 5 weeks). From this I don't see CEA as much of a marker although it did spike after a few Folfox Treatments.
CA 19-9- Jan: 7 (pre-chemo) Feb: 9 Mar: 11. Apr: 11 - Discontinued as Onc doesn't think it's a marker.
CA 15-3 March: 39 - this is higher than normal but Onc says Chemo havoc, will request a retest.
CA 125 Jan: 20 - this is high but in the normal range. Will request a re-test.
LDH - Jan: 136 )pre-chemo, never outside of norm spiked at 199 in the middle of FolFox and now July 136 again after being off Chemo 5 weeks. Doesn't seem useful as a marker.
ddmer - March = Normal
ESR: 8, 6, 5, 7, 10, 31 (infected wisdom tooth), 10.
MCV: Between 88-92 every test since January.

Whats it all mean?

AT
40 yo Male. BC Canada Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX Commenced Jan 9/2017 - Avastin(Bev) added after round 1.
June 2017 Dose Reduction on Round 11 due to Neuropathy.

mariane
Posts: 534
Joined: Sun Sep 13, 2015 6:16 pm

Re: Maintenance Chemo or No ?

Postby mariane » Mon Jul 31, 2017 8:24 pm

I think biopsy of one of affected lymph nodes and pathology of it will tell you most accurately what to do. The percentage of pathological response to treatment can help to evaluate the risk of chemo break.

Good Luck!
mom of 8 years old twins, dx @ 40 with upper rectal cancer, 10+ liver mets in 6/2015, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!


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