New member: Stage IV at 25 currently with Dr. K

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saffa
Posts: 19
Joined: Sun Nov 15, 2015 7:20 am
Facebook Username: Alexandra bergs

New member: Stage IV at 25 currently with Dr. K

Postby saffa » Fri Apr 29, 2016 8:51 pm

Hi all,

I was diagnosed at the end of October 2015 and found this site in the first weeks but have not posted until now.

So diagnosed with Stage 4 (liver mets and potential lymph nodes in chest) - completely blindsided me. I was living life to the full in London: working 16 hours a day in banking, traveling every weekend around Europe and partying far more than what would be considered healthy. I thought I was on track for a life that I had worked so hard for, years of schooling and university but the rug got pulled from underneath me... There is a part of me that acknowledges I should have expected this - my mother passed away in 2009 but we never managed to find a primary due to widespread progression upon diagnosis, my grandmother was pancreatic, my great-aunt colon - I asked my GP if I should be doing anything after my mother passed - he said "Don't worry for now, start getting tested at 25"... turns out that 25 was too late. Despite the prevalent family history by some twist of fate I tested negative for most known genetic mutations and positive for KRAS.

I was diagnosed on a Tuesday afternoon and by Friday I had been started on Folfox and Avastin, I was being treated in London and decided against returning to South Africa (where I grew up and where most of my remaining family is). The oncologist in London was extremely optimistic stating that he expected me to be around in five years due to current advances, at first I was almost elated to hear this prognosis because all of my family members had not lasted 6 months from diagnosis but the more research I began to do, the more the nagging feeling turned into a full fledged disbelief at what he was telling me. Through this forum I found out abut the HAI pump and within a week I was sitting in Dr. Kemeny's office. Not only was the radiologist and her interpretation of the scans different (she didn't think the lymph nodes in my chest was cancer nor my 6th rib which is now thought to be fibrous dysplasia) - she thought that the HAI pump could be potentially be a good option for me given the tumour burden in my liver. Well my oncologist in the UK flipped out when she called him and literally called her crazy on the spot - he thought the HAI was outdated and it overlooked the fact that my disease was ultimately a systemic one and should therefore be treated as such.

After deliberating the pros and cons of each proposed treatment, I decided Dr. K offered me a realistic shot and not pipeline dreams. I called my younger brother in South Africa and asked him to move with me to NYC so I could get treatment here. I had my primary resected and HAI implanted on 02/24/16 and after a tough surgery with a few rather scary complications, I started treatment of FUDR and Folfox. Much to my dismay my CEA has doubled since I started treatment - I asked Dr. K what was going on and if we could move my scans up or switch up my chemo (given after 10 rounds of oxaliplatin I may have become resistant to it) - she seems to think that since my LDH has decreased significantly and my liver panel has improved so much this could be a case of CEA flare... I again am a sceptic. I know at some point I have to hand over my care and trust the doctor I have chosen but I feel the most difficult part of this has been the lack of control and helplessness. I had a scan today and will get my results on Monday (bit bummed because Dr. K wont be there) - I am freaking out but to be honest I have convinced myself that it is going to be awful.

I am scared and am not sure where to turn next - there is a part of me that says I currently have no symptoms and for the sake of QoL I should accept now what seems to be inevitable and pack up my bags and head home. The other part says that this was never going to be easy and the next step should be trials given that I am still strong enough to do it (currently the only one I am aware of is the Prof. Rene Adam liver transplant trial in France).

I am reaching out to this community and wondering what your thoughts are - is it possible for the FUDR and Folfox to have failed so spectacularly within two months? Any success once Folfox failed with Folfiri? Any experience with a CEA flare (or am I delusional for even thinking this could be a possibility)? Is now the time to consider a trial given I am still relatively strong? Sorry for the million questions, which there are probably no single right/easy answer to.

Thank you to everyone on this forum for being so open with their experiences - I honestly cannot express how much of a support it is both in terms of knowledge and experience.
25 yo Female diagnosed 10/10/15 Stage IV (sigmoid primary and liver mets inoperable)
KRAS-mut (G12V) Tp53-mut MSS
Folfox 10/15-04/16
HAI/LAR @ MSK 02/16
CEA rising
Lung nodules confirmed 05/16
Switch to Folfiri/FUDR/Mitomycin 05/16
Looking for clinical trials
CEA dropped from 842 (05/02/16) to 257 (06/29/16) - scan confirms liver and lung shrinkage

stu
Posts: 1343
Joined: Sat Aug 17, 2013 5:46 pm

Re: New member: Stage IV at 25 currently with Dr. K

Postby stu » Sat Apr 30, 2016 3:05 am

Hello ,

Sorry you have to be here but I admire your proactive approach. I can just imagine how your previous London life was and the adjustments you require to make. My mum is treated in Scotland and has been a stage 4 patient for seven years. She chased surgical windows of opportunity when possible.
Cea flares are accompanied by soaring anxiety. My mum's cea was always on the lower side but half way through treatment it double , higher than its ever been. It did it the second year also. Her cea just becomes an unreliable reading during chemo. So for now I think its reasonable to trust your Drs judgement on this one.
Enjoy the rest of the weekend.
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Stanfordmom
Posts: 612
Joined: Wed May 14, 2014 1:32 am

Re: New member: Stage IV at 25 currently with Dr. K

Postby Stanfordmom » Sat Apr 30, 2016 3:06 am

Hi There,

I was diagnosed with stage 4 colon cancer with liver mets in 2014. I went to sloan and got treated by Dr. K. I had a surgery in Sept. 2014 to remove my primary, ovaries, and implant the HAI pump. My CEA also went up and almost doubled in the first two months of FUDR and folfiri treatment. Then it went down steadily and I was able to have a pretty extensive liver resection in April 2015. So far my liver looks ok. So in my case, it was most likely a CEA flare.

So hopefully yours is, too. Hang in there and be strong! It is a long and hard journey. We will support you on the board.

Sha
DX 4/2/2014 at 44, stage 4, mets liver and ovaries
Mom to 2 boys
Three surgeries, HAI pump and lots of chemo
fighting!

peanut_8
Posts: 2334
Joined: Sun May 25, 2014 1:31 pm

Re: New member: Stage IV at 25 currently with Dr. K

Postby peanut_8 » Sat Apr 30, 2016 10:57 am

Hi saffa. Welcome to Colon Talk.

I can understand you being nervous about how your treatment is going. As a point of reference, my onc didn't check my CEA during adjuvant chemo. He feels it is an unreliable measure during the time of treatment. Once you see the results of your scan, you'll know how effective the HAI, FUDR and FOLFOX are. I'm sure you know this, butt Dr. K has amazing statistics on how well her patients do. If I were to develop liver mets MSKCC would be the first place I would go, without hesitation.

How's the weather in NYC today? Maybe you could take a walk in Central Park to clear your mind, or perhaps a baseball game. Just anything really to ease your nervousness until you get the results of the scan on Monday.

Best Wishes,
peanut
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

Andrea1976
Posts: 383
Joined: Sun Jan 03, 2016 10:32 am

Re: New member: Stage IV at 25 currently with Dr. K

Postby Andrea1976 » Sat Apr 30, 2016 3:35 pm

So sorry about your disgnoses. You seem so gifted, acomplished and full of life!!! But fight girl!!! You can do it!!! I don't have any experience to help you. But my impression is that you MD is one of the best in the world.
Stage I
pedunculate polyp in descending colon
moderately diff adenocarcinoma 0.6 cm
Tumor confined to the head of the polyp
Stalk margin 2 cm negative for dysplasia and malignancy
Polyp removed during colonoscopy 1/15/16
No lymphovascular involved
No surgery

User avatar
elise
Posts: 1519
Joined: Fri Apr 27, 2012 5:09 pm
Location: Ontario (Canada)

Re: New member: Stage IV at 25 currently with Dr. K

Postby elise » Sat Apr 30, 2016 9:16 pm

Hey :)

Saying hi! I was dx stage 2 at age 30 and stage 4 (liver met) at 32. resected and now NED at 34.

I also did a ton of research when I had my reoccurrence. HAI vs surgery. USA vs my home in Canada. There are so many options.

Personally I've learned a few things along the way. You've gotta trust your onc. Simple as that. Do research, know your options, push for yourself BUTT also trust. Go to your apt with your list of questions and options but also be ready to listen to what they have to say.

Have you had a scan since your original dx?

Elise
2012
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
2013
Feb - NED
2014
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Oct - CLEAN SCAN
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
2015
Ap, Oct - NED
2016
Mar - NED

kandj
Posts: 289
Joined: Sun Sep 27, 2015 11:29 am

Re: New member: Stage IV at 25 currently with Dr. K

Postby kandj » Sun May 01, 2016 10:55 am

My DH is also a patient of Dr. K and has the HAI pump. We were given little hope at another large cancer hospital and then sought out Dr. K. DH, like you, has numerous mets in his liver and he has had a very good response to the FUDR and will be having a liver resection this May and ablation. His CEA has also risen during treatment. Funnily, it was below .5 when he was diagnosed and he had multiple 2-3cm tumors in his liver then. At Sloan it has been 6-7 yet when he gets it done at his local oncologist it is usually 1.7-1.8.
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19 lung/adrenal gland recurrence 11/19
Adrenal ablation2/20 Robotic Assisted VATS 3/20 Xeloda again

saffa
Posts: 19
Joined: Sun Nov 15, 2015 7:20 am
Facebook Username: Alexandra bergs

Re: New member: Stage IV at 25 currently with Dr. K - Update

Postby saffa » Mon May 02, 2016 9:20 pm

Thank you for all the responses - they definitely did help quieten my nerves over the weekend.

Dr K was still not in from today but I believe she is back from next weekend - she took vacation after ASCO 2016 (I know a few members have been asking).

So my results came in and weren't what I hoped - there are three liver mets that have grown slightly (two FUDR treatments - 100% and 50% I believe) - covering doc is now switching up my whole chemo combo. I was on Folfox and FUDR but we are now doing CPT-11, mitomycin-C and FUDR. She said she was 'hopeful' since my body had never seen any of the chemo before that we could get a good result. I have a few concerns, mainly that Dr. K wasn't there to oversee my new regime and 2. that I have not heard that mitomycin and FUDR really work for anyone else.

I think at this point I am going to start applying for trials, for now I know of three:

1. TIL at NCI (they are no longer recruiting due to reaching capacity but an email to a few people never hurt anyone)
2. TIL at MD Anderson starting in August (although this seems a little too far away to me)
3. Liver transplant trial in France under Prof Adam (there have been some nodules picked up my recent scan that would have to be resolved, I have heard Folfiri can be useful for this but again I think this is me shooting in the dark a bit)

So not the best news today, I think what scared the most is that I have only been on a first-line chemo and with that having failed I do not feel that I have that many options in the world of chemo open to me due to KRAS mutation.

One step a time but also approaching this with a realistic mind-set and now forming a bucket list of end of life care facilities so that there is a silver lining to every cloud :)
25 yo Female diagnosed 10/10/15 Stage IV (sigmoid primary and liver mets inoperable)
KRAS-mut (G12V) Tp53-mut MSS
Folfox 10/15-04/16
HAI/LAR @ MSK 02/16
CEA rising
Lung nodules confirmed 05/16
Switch to Folfiri/FUDR/Mitomycin 05/16
Looking for clinical trials
CEA dropped from 842 (05/02/16) to 257 (06/29/16) - scan confirms liver and lung shrinkage

kandj
Posts: 289
Joined: Sun Sep 27, 2015 11:29 am

Re: New member: Stage IV at 25 currently with Dr. K

Postby kandj » Mon May 02, 2016 10:12 pm

I am sorry it was not better news. :( I am hopeful for you that this change in chemo will be what does it for you though! Don't give up until you have tried absolutely everything!
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19 lung/adrenal gland recurrence 11/19
Adrenal ablation2/20 Robotic Assisted VATS 3/20 Xeloda again

gfpiv
Posts: 157
Joined: Tue May 25, 2010 9:24 pm

Re: New member: Stage IV at 25 currently with Dr. K

Postby gfpiv » Mon May 02, 2016 10:15 pm

FOLFIRI/CPT-11 is often very effective, and in many cases FOLFIRI is used instead of FOLFOX as first line treatment. And mitomycin C can also be helpful, though likely to a lesser degree. (Personally I'm intrigued by metformin too, but I digress.)

In any case, the point I wanted to make here is that, unfortunately, the VAST majority of clinical trials do not have positive results. And I may be biased, but given that you are being treated by the #1 or #2 best cancer hospital in the US at the moment, in your case I would definitely give your new regimen a shot. Honestly, my blood boils a bit when I read your UK onc's statement - frankly I would have no confidence in her at all. First, five year survival for stage 4 colon cancer is "possible", but unfortunately it is by no means likely...much less an "expectation". Secondly, as you've seen here, HAI is NOT an outdated treatment...I and many others would not be here today without it. Thirdly, if she's most concerned about systemic treatment...well, after failing on FOLFOX, Irinotecan/CPT-11 IS by far the most widely-accepted second line systemic chemo (with or without systemic 5-FU). And frankly, 10 txs of Oxaliplatin is just about as much as anyone should be given anyway.

I'm sorry you haven't gotten as fantastic results as you might have hoped for so far, and I understand how disheartening that can be, but please don't resign yourself to the grave just yet. You still have many options left. (Incidentally, ever look into SIRT / Sir-Spheres?) I think you are smart to be "prepared" for the worst case, and you've done a good job researching and look into your tx options, including the possibility of clinical trials. However, I might humbly suggest giving Dr. K's new regimen a brief chance first - especially if you've only had 2 FUDR txs (why was one at 50% if your liver panel looks good? assume it was low WBC or platelets?)

In any case, I wish you the best of luck in beating this.
-Chip
Chip
DX stage IV CC Jan '10, numerous unresectable liver mets
FOLFOX + Avastin Feb-Jul '10
Colon resection, HAI install Aug '10
Systemic FOLFIRI and hepatic FUDR Dec'10-May'12
Chemo break May'12-pres (tumors calcified & stable, knock on wood)
Billiary bypass surgery and SBRT on pesky liver met in 2015

mariane
Posts: 677
Joined: Sun Sep 13, 2015 6:16 pm

Re: New member: Stage IV at 25 currently with Dr. K

Postby mariane » Mon May 02, 2016 10:56 pm

Saffa,
I am sorry you are dealing with this especially being so young.
I think you found the best colon cancer with liver mets oncologist in the world. Dr K knows more about liver mets than anybody else. I heard about mitomycin working well on the liver. I would at least try it.FOLFIRi is easier chemo than FOLFOX. I was given FOLFIRINOX as first line chemo and it was survivable. FOLFIRINOX + Avastin gave the longest survival rate according several trials. FOLFIRINOX + FUDR is too harsh for the liver at this point for you.
Are you Lynch/MSI by any chance? It would expand your treatment options. I suppose you are not because it is the first test nowadays :( but Your family history suggests Lynch.
Did you get any shrinkage of your mets when given systemic chemo: FOLFOX + Avastin by LOndon oncologist??
Did your scan brought mixed results - some tumors growing (3), the rest shrinking?? Or you have just these 3 mets?
I think you should stay in NY and at least try the mitomycin.
Maybe ASCO 2016 will bring some new interesting news from immunotherapy trials??
I think NIH trial could be dangerous if your liver mets grow fast. You need several off chemo months. Achieving control and stabilizing the liver is priority at this point.
I sent my primary tumor to CARIS to do profiling and check whether there is more chemo options for me than the standard ones. IT came back that I have Taxols available as well. Foundation One is doing profiling.
I also did the fruit fly study at Mount Sinai in NY. They are testing all the available meds on fruit flies with my primary tumor genes. I do not expect much but who knows.
I got final shrinkage with FUDR + FOLFIRI. I had excellent results on FOLFIRINOX than zero shrinkage on FOLFOX + FUDR. After first step liver resection I got shrinkage on FOLFIRI which allows resecting the mets from my right lobe without PVE. So FURY worked.
I do not like your LOndon oncologist opinion either He is very wrong that your disease is not being treated as systemic one. You got systemic chemo and local hepatic chemo. The best option available at this point.
Every cancer treatment success depends on tumor biology. Sometimes aggressive, fast growing cancer starts dying as fast as it grew. I wish you this with all my heart.
Good Luck! Praying for you,
mom of now 11 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, 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!

saffa
Posts: 19
Joined: Sun Nov 15, 2015 7:20 am
Facebook Username: Alexandra bergs

Re: New member: Stage IV at 25 currently with Dr. K

Postby saffa » Tue May 10, 2016 9:08 pm

Sorry about the delay in response - I think I needed a bit of down time after the bad news!

Chip - I had looked into SIRT but I had thought this treatment was no longer available after HAI? I had massive complications post op from the avastin (internal bleeding which when being reabsorbed caused my bilirubin to rocket so I think Dr. K was being careful). However I haven't seen her in a month but I am seeing her Monday hopefully so I am holding thumbs she will be able to shed a bit more light on the situation. Thank you for the motivation I was feeling hopeless but I have to remind myself that it was first line chemo and I still have other options.

Mariane - I didn't have any shrinkage but I have multiple mets on the liver of which some where stable and growth on three (the three largest). I am hoping that CPT-11 does the trick, although I was a bit surprised because they left off the 5fu with the treatment. The chemo nurses seem to think it was because of the mitomycin for the liver. I have read a few papers where the mitomycin with the FUDR had good results but a little worrying was the lack of posts on this forum and those that I found were not that positive. Again, I really have been anxious not seeing Dr. K so I think being able to speak to her will help. I see you are there on Monday?
25 yo Female diagnosed 10/10/15 Stage IV (sigmoid primary and liver mets inoperable)
KRAS-mut (G12V) Tp53-mut MSS
Folfox 10/15-04/16
HAI/LAR @ MSK 02/16
CEA rising
Lung nodules confirmed 05/16
Switch to Folfiri/FUDR/Mitomycin 05/16
Looking for clinical trials
CEA dropped from 842 (05/02/16) to 257 (06/29/16) - scan confirms liver and lung shrinkage

mariane
Posts: 677
Joined: Sun Sep 13, 2015 6:16 pm

Re: New member: Stage IV at 25 currently with Dr. K

Postby mariane » Tue May 10, 2016 10:11 pm

Saffa - yes, I will be there on Monday. We could meet if you like. I would love that. I will spent the whole day at Sloan - appointments with surgeon, oncologist, tests etc.

I received a phone call from my surgeon's nurse today and asked about Dr K. She confirmed that Dr K will be back to work on Monday. Saffa, hold on tight. Immunotherapy is coming fast. Huge money are being pumped right now into it so we need to keep hope. Did you meet your liver surgeon? Maybe your tumors are resectable even with mixed results from the last scan?? I started with 10+ liver tumors and will have my hopefully last liver resection on Tuesday next week. It will be my 3d liver surgery. Even multi stage liver surgery can lead to NED.
mom of now 11 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, 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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