Mother stage IV, terrified

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Mother stage IV, terrified

Postby njf » Mon Jan 08, 2018 9:47 pm

I am not even sure what I can say. My mom was DX'ed in October with Stage IV and is inoperable. There are 11 mets (7cm largest in left lobe, 4cm largest in right and the rest are 2cm or smaller) to the liver and a 7cm applecore shaped lesion in her colon. Her local oncologist told her that she can only give her 2-3 years and that is if she responds to treatment. She has not had genetic testing done and the current office she is seeing has lost the slides somehow so she has to go through another biopsy. We had a second opinion at MD Anderson and while the doctor there didn't give a different opinion on the current treatment he wouldn't give a time frame like the other doctor but did confirm that the current mets are unresectable. We realize the situation is bad but we are hurt that the first doctor gave so little hope. We are also confused as to whether or not resection might be possible down the road as neither doctor has given much input on that if treatment is shown to work. Her CEA prior to chemo was 115 at time of DX, she had a drop down to 59.5 prior to her first treatment and both her oncologist made a remark about said drop (we had changed her diet and started on several supplements, not sure if this had anything to do with it, one can always hope something was working) and after her 3rd round of treatment her CEA has dropped down to 14.2 (Folfox + Avastin). I am just wondering if anyone has made it to resection in similar situations and if there are others that can give her support in her time of need.

I am also beyond terrified for her, she is strong and brave and is doing what she can including exercise after a sedentary life/desk job most her life (she is up to 15mins recumbent bike despite being on her 3rd treatment round) and weight lifting, eating good including juicing and taking different supplements that are said to help but I can see the look of fear in her eyes and it hurts me so bad. I want the best for her and I want her to beat this despite the odds.

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Re: Mother stage IV, terrified

Postby Mercy110 » Tue Jan 09, 2018 2:12 am

I am so sorry to hear the news about your mum. Look at my signature and you will find me having similar experience with you except my mum's met seems more controllable. She is also doing Folfox with Avastin and told to be inoperable. My nurse friend did what your first onco did but I see my mum is doing well so far. Actually what I would like to say is that no one would know how long exactly your mum will live, but the most important thing is that she is tolerating chemo well so far and she is still here. Don't worry abt something not yet happen.

Prayers to ur mum and family. Stay strong.
Daughter of Mum age 56, NRAS-mutate Q61R
2017-05: Surgery done. Temporary stoma. Path: T4N1M0. Stage3C. Chemo - Xeloda. Rejected radio. CEA: 7.3
2017-08: CEA: 8.0 (1st) CEA: 9.8 (2nd) CT Scan: Multiple lung nodules. Stage4.
Start from 2017-09: Chemo - FOLFOX + Avastin, 85% for serious diarrhea CEA: 7.0, 4.7 (10/10), 3.7 (11/10), 2.9 (12/3), 2.2 (12/21), 2.4 (01/09)
2017-11: Stable Multiple Lung Nodules from CT


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Re: Mother stage IV, terrified

Postby stu » Tue Jan 09, 2018 3:01 am

Hi ,
Sorry to hear about your mum . The Dr has a duty of care to tell your mum what she is up against so she can be prepared in all aspect however No one can say how she will respond to treatment and that becomes the bigger question . They will want her to respond but work in an environment where they have to be guarded to prevent false hope . We found it all pretty dismantling too at the beginning and felt as though they had given up on her but they had not by any means . That was back in 2009 and my signature on her behalf tells her story . Your mum has shown an initial downward trend in her CEA and that’s good , just what they like to see . Don’t be surprised after a few it pops upwards as chemo itself and tumour death can do this .
I wish your mum every success . They review the scans and see what has been achieved . Remember there is Radio Frequency Ablation also .
Take special care , my mum had one tumour the size of a small orange . It went down to a dot on the scan . A little tiny dot!!!
Take care,
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

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Re: Mother stage IV, terrified

Postby Robino1 » Tue Jan 09, 2018 7:49 am


I, too, have been given the 2 year talk. I think it's standard talk for cancer that is not able to be operated to remove. Like your mom, I have changed my diet and doing the supplement thing. Exercising and anything that can possibly give me a better chance at knocking this cancer out of me.

Remember that they are going by statistics. Not all of us will follow what statistics say should happen. My story is in my signature. I just finished my 12th session of chemo and it is still working. I'm not in remission but getting closer. I will continue until it does go into remission (God willing). I have dropped the oxaliplatin due to neuropathy symptoms. I made it 10 rounds with it. ;)

Keep doing what your doing as it seems to be working. She may get to a point where they can be operated on.

You found an awesome place to get support, answers to questions and this place has tons of info.

If my current treatment starts to fail, not an option, there are trails that I can look into.

My thoughts are with you and your mom.
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217 CEA 219
FOLFOX started 6/17
CEA 202 Not genetic
8/29/17 CT excellent melting of tumor. Ascites is gone.
12/8/17 Markedly decr ant peritoneal nodularity since 8/29/17 compat w/ marked posi respns to therapy
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3
BRAF V600e

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Re: Mother stage IV, terrified

Postby SweetC80 » Tue Jan 09, 2018 9:35 am

I'm so sorry you and your family are going through this. It is so hard on many levels and the unknown is the hardest for the loved ones (at least in my experience). My mother's mets are growing very rapidly and she was told if we can't find a chemo she can tolerate and respond to she has 3-6m, a lot of that is because her tumors are blocking multiple veins and growing so aggressively. He also told us if he is able to find a chemo that her cancer responds to and a dose she can tolerate she could have 1-2 years. He told us he doesn't like to talk timelines because he has seen patients he thought were responding great end up going down quickly and patients he thought had months live a decade. He said anything is possible, and as long as she is healthy enough and willing to continue trying different things we are chugging along. She is currently in the inoperable place, but anything is possible and that doesn't mean she won't be operable in the future. There are ups and downs but she is "fine" at the moment and we are hopeful this new dose is her magic ticket. I've seen some amazing things on this board that keeps my hope up when things are looking down. I've realized that I can't live in the what ifs. I tell myself today my mother is alive and still in active treatment and for that I will be hopeful for many more days to come.

I will keep you and your mother in my thoughts and I hope your mother responds well to treatment.
My Mom
12/16 Stage IIIb Rectal Ca CEA 1.2
1/17-2/17 Chemoradiation CEA 4.4
5/17 Entire Colon, Rectum & Anus removed Perm Ileostomy Bag
9/17 Stage IVb 9cm Liver Met & 7mm Lung Nodule CEA 197
9/17 FOLFIRI CEA 160
10/17 Confirmed KRAS Pos CEA 210
11/17 Met growths Liver 10cm & Lung 8mm CEA 425
12/17 FOLFOX again Met growths Liver 13cm & Lung 1cm CEA 405
12/17 Xifaxan due to Hepatic Encephalopathy
12/17 New 2cm liver Met
1/18 CEA 992

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Re: Mother stage IV, terrified

Postby crazylife » Tue Jan 09, 2018 10:19 am

Can you get her to see Dr. Kemeny in NYC at Memorial Sloan Kettering? She specializes in patients with liver only disease and may be able to help your mom. She has helped many people on this board live for many years and even be NED. I believe mariane (member on the board) had over 10 lesions and has now been clear for a year and a half.
Wife to DH, 41 years old, diagnosed 11/15
Stage 4, Mod diff, 13/24 LN, 1 liver met
Colon/liver resection at MSK, 11/15
8mm lung met (not confirmed) and enlarged lymph nodes 1/16
12 rounds of folfox (9 with Oxi) 6/16
NED - July 2016
NED - October 2016
3 lung mets - March 2017
7 lung mets, May 2017
RFA to largest met, June 2017
Lung mets growing slowly, October 2017 (off treatment since June 2016)

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Re: Mother stage IV, terrified

Postby juliej » Tue Jan 09, 2018 7:09 pm

I too was diagnosed Stage IV like your mom. I had 7 lesions in my liver (all lobes were affected) and a tumor in each lung. They gave me a 6-month life expectancy without chemo, and 18-24 months if I managed to "do well" on chemo.

After 13 months of chemo and considerable shrinkage of all tumors, my local oncologist still said I was inoperable due to the number of tumors. I got a second opinion at Memorial Sloan Kettering Cancer Center in NYC with Dr. Nancy Kemeny. She said I was a good candidate for surgery! :D Six weeks later I was underwent a liver resection and had an HAI pump implanted. The HAI pump delivers chemo directly to the liver. Three months later I had double-lung surgery to remove the lung tumors. That was over 5 years ago. I am completely free of all cancer now.

I know exactly how scared your mom is because I have been in her place. Don't give up! There are many doctors who discourage Stage IVs from anything but palliative treatment, but I guarantee you there are others who will fight for her life. If at all possible get an appointment with Dr. Kemeny. If NY is too far away for you, ask MD Anderson about getting an HAI pump. I believe they also have an HAI pump program there, although Dr. Kemeny is the expert in the field.

Your mom's drop in CEA is a very good sign that the chemo is working. Her CT scans should be showing a reduction in the size of the tumors too. Now is the time to find someone who will be aggressive with her treatment. It doesn't sound like her docs are mentioning all the options out there -- HAI pump, immunotherapy, TIL, etc. Those things should have been discussed with your mom. It leaves me thinking she needs a doc who will be more aggressive on her behalf. Stay strong. Good things are still possible and I am the living example of that.

Let me know if you or your mom have any questions about the HAI pump.

Below is a link to Dr. Kemeny.

And here is a link to a video about our Sleen and her TIL therapy.

Hope this helps!
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 12/13/2017, CEA<1

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Re: Mother stage IV, terrified

Postby mariane » Wed Jan 10, 2018 8:53 am

I can echo Juliej.
I was diagnosed in June 2015. My situation was very similar to your mom's. I had 10+ tumors in my liver. The largest was 7.5cm almost completely overtaking the left lobe of my liver, many smaller tumors, some of the around 4cm, badly located.

I had HAI pump treatment by Dr. Kemeny and after 3 liver surgeries I got to NED status.

Your mom's situation's again looks a lot like mine. I also had this sudden drop in CEA. Very good prognostic factor. My CEA dropped from 140 to <2 after 4 FOLFIRINOX treatments and I got complete pathological response. I was NED - no evidence of disease on all my check ups since my last surgery in May 2016. My CEA dropped in October 2015. At that time my surgeon came to me with my pathology report really jumping from joy and said that I would make it. Dr. Kemeny said that my cancer that my cancer was dead due to chemotherapy.

My next check up approaches and of course I am scared what it will bring. Anyway I feel very well. I eat, exercise, ski, jog, do all the pleasant things I thought were forever denied for me and most of all I can see my small kids grow.

There is hope! 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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Re: Mother stage IV, terrified

Postby njf » Fri Jan 19, 2018 6:15 pm

Thank you for the responses! I have been looking at the HAI pump for awhile so its great to see people recommend it and see those that have obtained results. We are now looking more into the TIL trial if things go that way and she doesn't or is no longer responding to treatment.

I do have an update on her though. She was seen for a CT scan on Wed (pending results, will know next wed) and a biopsy on yesterday (Thursday). The results from the CT scan didn't make it to the hospital performing the biopsy so the doctor there did a ultrasound to locate the tumors to do the biopsy, he said then that he could tell that the largest liver tumors are now smaller, exactly he can't tell but he COULD tell from the results from her old CT scan that they are smaller. During the biospy though the doctor was unable to obtain good samples again. He attempted 9-10 samples and could come up with only cells that are already dieing and not enough to perform any testing. His only recommendation would be to biopsy the primary tumor in the colon in the hopes that it still has viable enough samples to do the genetic testing.

They are saying the tumors are almost mostly necrotic including the outer edges and they can't obtain samples, this doctor said its a good thing and I hope that is the case because I have read that this sometimes just means that the tumors are fast growing and starving themselves so they sometimes die from the inside out and thats when they spread because the old soil is no longer fertile enough. I am hopeful though that because the outer edges are also showing signs of necrosis of the tumor this means that she is having a really good response to treatment but again it is just worry some because I read conflicting things on necrotic tumors and what they mean.

Is there anyone that has went thorugh anything like this? I am kinda frustrated we are unable to find out the genetics of this disease but at the same time I am not sure of what any of this means and its scary.

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Re: Mother stage IV, terrified

Postby stu » Sat Jan 20, 2018 12:59 pm

Sounds very good news for your mum . To be honest I have never heard of spread that way . My mum had fast growing tumours in her liver the rate of cell division and her chemo responsiveness were a good combination . Her oncologist said he had actually never had such a good responder . That made him reluctant to pursue surgery as he liked she did so well on chemo .
Your mum has achieved the very best you can hope for just now . Being responsive to chemo in her circumstances is everything . Enjoy her good news .
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

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