Never able to be cured....I need u guys more than ever

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Trying
Posts: 228
Joined: Sun May 13, 2018 10:11 pm

Never able to be cured....I need u guys more than ever

Postby Trying » Tue Feb 11, 2020 11:31 pm

Today my dr. Told me that he reviewed my file for the second time with a board of oncologists and they all agree I will never have surgery. He said at the beginning he thought it was possible as the oxy knocked out 8 tumors but after a year and half of chemo and how tumors are and lymph nodes are responding it will Never happen surgery would kill me as it's through the lymph nodes and lymph nodes travel through the blood stream and they would basically have to take put all my blood and lymph nodes. ???? I haven't grown new cancerous lymph nodes. Please know we are getting our files out to other major hospitals in the usa. Please don't advise I go to a certain hospital because we are already going to be sending to the top ones including usa. Dont really want to hear "sorry to hear" because I don't want to read it and start crying. I Need stories of inpsiration
when you or someone you know of being told they couldn't have surgery after a year and a half of chemo as it would kill them and had a miraculous turn around or something.... or chemo being able to keep people alive for a very long time or being told such a death sentence and then being told otherwise. please know we are already contacting usa hospitals. I need to be at my babies graduation. That's all I ask. Please no negativity or telling me to accept it
I'm falling apart and so is my family
I Need you guys more than ever right now. Hollistic treatments anything ...positive stories to give me hope...please...even if it's just someone u heard about
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy

stu
Posts: 1267
Joined: Sat Aug 17, 2013 5:46 pm

Re: Never able to be cured....I need u guys more than ever

Postby stu » Wed Feb 12, 2020 8:18 am

Ok. Coming from the UK and watching things unfold over the last ten years we are much more conservative in treating stage 4 cancer than USA . Part of that is we have a health care system that serves all people . It’s great in my opinion but one shortfall is its got quite strict criteria that on reading up on the USA does not seem burdened with . This is slowly changing and particularly with surgeons going in more aggressively. The guidelines have just been updated to look at disease in more in one place using more local treatments where the window of opportunity exists . Reducing tumour loads etc . Ten years ago if disease existed in more than one area away from the primary tumour they only offered chemo. Canada has yet another form of healthcare which I am sure serves the general population well but may again be conservative with stage 4 patient management . Long and short I believe where one country or surgeon reached their limit does not mean treatment is not available.

Because my mum had a time lag between her liver and lung mets she was allowed to go to surgery . If they had appeared at the same time she would not have been referred and been classed as inoperable due to the criteria. In fact she was operable and both surgeries brought about the removal of the disease. If she lived in the USA she may never have had that issue and this is the intricacies of healthcare that must be navigated . I suspect that’s what other people are picking up on too . Can’t say what the review will say but they want to ensure your not being held back by criteria. We have top cancer specialists too and brilliant cancer centres . We never have to worry about insurances or finances but we do have to navigate criteria and resources.

Many people live on and off chemo for years and years . You have a responsive result on chemo .I think we made much more progress as a family when we switched to think more along the lines of disease management , reducing tumour loads etc . I think you have come far on reducing the tumour load in your body . Perhaps some other specialist has an idea to reduce it further . That is a very real possibility . You know I have talked in the past a lot about second opinions . I did not go into panic mode when my mum’s oncologist at the time said no to a further liver resections . In my mind I thought thank you very much for sharing your clinical judgement with us ( his professional right to do so ) but we will be asking the top liver surgeons for their views . Three months later she was in the other side of a resection . Her oncologist called it a potential blood bath , that she could bleed out on the table . None of that actually happened . Apparently the surgeon has an incredible knife that seals as it cuts !!

Her lung surgeon said he wanted her on a clinical research project to observe how her tumour grew instead of surgery . I felt an instant headache . My husband knew him professionally and was in the room with us and I knew I was were going to have to do a bit of advocating without standing on toes . She had her surgery two weeks later . It often comes with a difficult path . It’s not easy but it’s worth pursuing.

Lastly adding oxy back in might open up other options on its own .

It must have been circulating in my mum’s blood or in her lymph nodes too as it made it’s way to two other organs away from the primary tumour . She has not had her blood replaced or lymph nodes stripped or however it was put but she has embrace good disease management. Slowly reducing the tumour load each year till there was just one solitary lung met to manage .

So I think along with others here , it is a gentle nudge to see if it’s a criteria issue and to see if other options are there for you . I longed to hear the worded cured in the first few years , over ten years later I see the benefits of good disease management instead . I still think they would never use the word “ cured” for her .

Well done on reaching out to other hospitals , make sure it’s the best in that field and I will be thinking of you as you pull this together . I know this has been a big thing for you to do and has not come easy to you but your in the process .

Take care ,

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 .

Trying
Posts: 228
Joined: Sun May 13, 2018 10:11 pm

Re: Never able to be cured....I need u guys more than ever

Postby Trying » Wed Feb 12, 2020 10:13 am

Thank you. That's hopeful. I appreciate it.

Nicole
Last edited by Trying on Wed Feb 12, 2020 10:46 am, edited 1 time in total.
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy

Claudine
Posts: 268
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Never able to be cured....I need u guys more than ever

Postby Claudine » Wed Feb 12, 2020 10:29 am

I longed to hear the worded cured in the first few years , over ten years later I see the benefits of good disease management instead . I still think they would never use the word “ cured” for her .


We are in the same boat; because one cannot resect a vertebrae, my husband won't even ever be considered NED. When all this began, something that helped us a great deal was to compare stage 4 cancer to diabetes - a chronic disease. Many people are now "living with cancer" instead of "dying of cancer". And with medical progress, who knows what kind of treatment may be around the corner?
I have a friend whose sister has been living with cancer for over 20 years now. And a colleague with an inoperable met (from small bowel adenocarcinoma) who, after 5 years of monthly chemo, recently had a clear scan! She suspects the tumor is still there, but since it is reacting so well to chemo, she's not too worried, knowing that if it starts going again, she can resume her treatment. And I hear more and more stories like these :)
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin since 03/19
6.7 cm left adrenal mass 03/19, 3.67 cm 12/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 10.2
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: 2 calcified granulomas, one 1mm stable nodule

Trying
Posts: 228
Joined: Sun May 13, 2018 10:11 pm

Re: Never able to be cured....I need u guys more than ever

Postby Trying » Wed Feb 12, 2020 10:48 am

That helped greatly!
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy

Lee
Posts: 6005
Joined: Sun Apr 16, 2006 4:09 pm

Re: Never able to be cured....I need u guys more than ever

Postby Lee » Wed Feb 12, 2020 1:08 pm

This is Sleen's journey. Hope it helps,

viewtopic.php?f=1&t=49736

Or have you looked into Keytruda?

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Trying
Posts: 228
Joined: Sun May 13, 2018 10:11 pm

Re: Never able to be cured....I need u guys more than ever

Postby Trying » Wed Feb 12, 2020 2:32 pm

Thanks lee. I've been tested and immunotherapy not an option. Will take a look at article in bit. I appreciate it
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy

Claudine
Posts: 268
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Never able to be cured....I need u guys more than ever

Postby Claudine » Wed Feb 12, 2020 2:49 pm

Trying, I'm not sure if this is the same type of immunotherapy. My husband is also MSS (micro-satellite stable) so he should not be a good candidate for Keytruda, but this is something different; if I understand correctly, TIL immunotherapy has been given to MSS folks (e.g. Sleen - I was making reference to the link).
Last edited by Claudine on Wed Feb 12, 2020 4:36 pm, edited 1 time in total.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin since 03/19
6.7 cm left adrenal mass 03/19, 3.67 cm 12/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 10.2
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: 2 calcified granulomas, one 1mm stable nodule

Detox
Posts: 55
Joined: Fri Apr 28, 2017 5:27 pm

Re: Never able to be cured....I need u guys more than ever

Postby Detox » Wed Feb 12, 2020 3:42 pm

I'm sorry but I still don't believe your oncologist and his "army" of doctors.

Obviously, I'm no expert but one doctor I talked to told me about ablation or some kind of procedure where they cut off blood supply to the tumor in the liver and it kills it. I'm sorry but I don't know what the procedure is called but hopefully someone else here does.

Also, being a stage IV patient myself, I think you have a chance of keeping the cancer stable or at least slowed down. I can't prove it unfortunately but I've worked hard to eat right, exercise, sleep, etc, and I've recently celebrated my 5 year anniversary as a stage IV patient.

In other words, I think there's a lot you can do for yourself outside of doctors, hospitals, chemo drugs, etc.

Trying
Posts: 228
Joined: Sun May 13, 2018 10:11 pm

Re: Never able to be cured....I need u guys more than ever

Postby Trying » Wed Feb 12, 2020 6:23 pm

Very helpful. Thank you guys
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy

User avatar
juliej
Posts: 3093
Joined: Thu Aug 05, 2010 12:59 pm

Re: Never able to be cured....I need u guys more than ever

Postby juliej » Wed Feb 12, 2020 6:23 pm

Of course, every case is different, but here's my story.

I had chemo for 14 months straight. At the end of that, I was told emphatically that I was not and never would be a candidate for surgery. I had mets in every lobe of my liver and both lungs. They said if they operated on one area, then the other areas would grow while I was off chemo. They also brought up "micromets" and said they must be everywhere in my body. They said this decision was "standard practice" for Stage 4's with advanced disease. They referred me to a therapist to help me better accept my fate, while also telling me to get my affairs in order and by the way, did I want to meet with the hospice team now??? :shock:

That's when I got a second opinion at MSKCC and everything changed. They were able to think outside the box, evaluate what had been working to reduce the size of my mets, and come up with an aggressive new plan. I was young and healthy (except for the cancer), so I was willing to do whatever it took to have a chance of surviving. Going to an exceptional cancer center that doesn't view all Stage 4's as hopeless cases was the key to my survival. There were no guarantees, but hell, anything was better than being told there was no hope of anything besides chemo or life (or until it quit working).

I'm alive now because I took that chance. That's pretty close to the "miraculous turn around" you mentioned in your message. Get a second opinion. Or a third. Find doctors that are more aggressive with treatment than the ones you have now. Get evaluated by doctors who are experts in difficult cases.

I know how you feel because it was very dark before things improved for me. Keep strong and keep fighting.

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

Lee
Posts: 6005
Joined: Sun Apr 16, 2006 4:09 pm

Re: Never able to be cured....I need u guys more than ever

Postby Lee » Thu Feb 13, 2020 12:13 am

juliej wrote:Of course, every case is different, but here's my story.

I had chemo for 14 months straight. At the end of that, I was told emphatically that I was not and never would be a candidate for surgery. I had mets in every lobe of my liver and both lungs. They said if they operated on one area, then the other areas would grow while I was off chemo. They also brought up "micromets" and said they must be everywhere in my body. They said this decision was "standard practice" for Stage 4's with advanced disease. They referred me to a therapist to help me better accept my fate, while also telling me to get my affairs in order and by the way, did I want to meet with the hospice team now??? :shock:

That's when I got a second opinion at MSKCC and everything changed. They were able to think outside the box, evaluate what had been working to reduce the size of my mets, and come up with an aggressive new plan. I was young and healthy (except for the cancer), so I was willing to do whatever it took to have a chance of surviving. Going to an exceptional cancer center that doesn't view all Stage 4's as hopeless cases was the key to my survival. There were no guarantees, but hell, anything was better than being told there was no hope of anything besides chemo or life (or until it quit working).

I'm alive now because I took that chance. That's pretty close to the "miraculous turn around" you mentioned in your message. Get a second opinion. Or a third. Find doctors that are more aggressive with treatment than the ones you have now. Get evaluated by doctors who are experts in difficult cases.

I know how you feel because it was very dark before things improved for me. Keep strong and keep fighting.

Juliej


YES to what Juliej just wrote!!!

Lee

P.S. Please also keep Sleen journey as a possible alternative. That thread has helped many people!
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

User avatar
ANDRETEXAS
Posts: 632
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Never able to be cured....I need u guys more than ever

Postby ANDRETEXAS » Thu Feb 13, 2020 1:20 am

I've followed juliej's journey since I arrived here on Valentine's day, 2014. She always has good advice from a personal perspective. She's full of accurate information.
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023

ONE DAY AT A TIME !

kandj
Posts: 275
Joined: Sun Sep 27, 2015 11:29 am

Re: Never able to be cured....I need u guys more than ever

Postby kandj » Thu Feb 13, 2020 8:44 am

I emphatically agree with juliej! My husband had well over 15 mets in his liver. Well scattered and in every lobe. The surgeon at MDAnderson basically told us to keep doing chemo until chemo didn't work and he died. Such bullshit. So we went to MSKCC (MDA was a 40 min trip from our house, so they were our first choice obviously). Leaving NYC after meeting with Dr. K was the first time we had felt hope since DH's diagnosis. After 5 months of pump chemo (and systemic) DH had a good enough response to get his liver resection. He had a liver recurrence after 15 months and had radiation to treat those mets. His liver has been stable (dead mets from the radiation) since Dec 2017. He has had a few lung mets pop up and an adrenal met, but they are going to zap/cut those out in a few weeks. MSKCC is very aggressive in their treatment. Can I say that DH will live to see our kids graduate? No, I can't. But I can tell you that we have far more hope of him doing so now than when he was diagnosed. And if we had stayed with our original plan he would be dead.

You mention lymph nodes. Are distant nodes throughout your body lighting up or is just the ones near your liver and Colon?
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
New spot seen in lungs and adrenal gland 11/2019

Claudine
Posts: 268
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Never able to be cured....I need u guys more than ever

Postby Claudine » Thu Feb 13, 2020 10:22 am

When we first got DH's diagnosis, a good friend told us that it's crucial to be an advocate/have an advocate for the fight ahead. Everything I've been reading on this forum confirms it.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin since 03/19
6.7 cm left adrenal mass 03/19, 3.67 cm 12/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 10.2
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: 2 calcified granulomas, one 1mm stable nodule


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