Met with oncologist for first time after tumor removal. Biz.

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Jason43
Posts: 42
Joined: Sat Nov 16, 2013 7:39 am
Location: Southeastern Mass

Met with oncologist for first time after tumor removal. Biz.

Postby Jason43 » Thu Dec 05, 2013 8:43 am

Since I've been home basically trying to feel better and get my body the proper nutrition for the second step I have not posted in about 4 days. So I went yesterday and it finally hit me. Really bad day. I began by asking the question of what to eat and drink to get ready for this battle with chemo. The answer I got blew my mind. Eat what're you want jason. Enjoy yourself. After that statement she came back to say that 11 of my 18 lymph nodes in liver are cancer. They are all spread out and as far as me hearing those dreaded words your liver is absolutely non respectable and your disease is non curable. She mentioned for me to go see a liver cancer specialist at mass general that she works hand and hand with but she said we must do the chemo first. But she said straight out to myself, girlfriend and family that as of right now we are not even close to those goals. I was prepared to make a regimented diet while on chemo so that my body would be ready. I was ready to do whatever it took. But now, it seems like it doesn't matter. This frightens me. Does this mean that I'm at the end? She kept saying enjoy every day jason, enjoy every day. My mom said I was taking it all wrong but was I? I leave the board with this question. Since the tumor is out now does that give me a limitless more life span, so to speak? My labs show my iron extremely low but other than that my liver is still working. My mind is taking over. I feel helpless, however I want to make a difference. I want to be strong. My mind keeps telling me different. I keep thinking about my girlfriend. She is 30 I'm 43. We have been together almost 5 years. She deserves a family, she deserves a real man who is not going to be hooked up to pumps and meds and bags. I feel I'm a burden to everyone in my circle wich is small anyway. My 7 year old who doesn't stay with me thinks after I get my staples out of stomach I will be all better. This is all so hard. If I never went to the colonoscopy all this wouldn't even be a issue. My tumor would have burst and I would have been dead. Now it seems I'm making everyone around me suffer and that's never been my intention. I am not a rich man by no means. I live week to week at best. So about 3 weeks ago I had my son for the day. Actually a couple hours. A way I was pumping gas at a 7/11 and he went inside to pay with me. On the way out a street person asked me for a dollar for something to eat, I had bout a Milky Way inside to share with my son. So I gave it to him. My son was fascinated. At 7 years old he had over 200 questions about the entire incident. Next I took my son to the barber for a haircut. Then he begged me for crab ragoons. Lol lol. I'm a softie so off to Chinese food we went. After finishing our meal there were left overs. My son out of the blue said daddy maybe that guy who lives at 7/11 is still hungry can we bring him this food. I excused myself went to bathroom and thanked god I had a little boy that grasped the entire situation. My son doesn't have fancy new video games, he actually plays Mario still from the 90s and loves it. My point of rambling on about this, is I haven't been involved in his life as much as I should have, however being sick humbles you quickly. I have so many things I'm thinking about its crazy. I'm sorry for all this writing but I'm home alone and it feels without this board to vent. Let's just say I wouldn't be attempting productive things. Thanks for everyone's ear. I don't want to die.
Stage 4
Many spots on liver 11/19/13
Unable to resect liver
Tumor removed 11/26/13
Liver resection 11/7/14
Lung resection 1/10/15
New tumors on liver already after 1st scan after surgeries.
Back on chemo 2/4/15
CEA from 1.7 to 37.2 8/10/2015
CEA 22.5 but have quadrupled in my lungs
Went through every chemo
I fought the fight. Gods hands now. Or Trials?

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: Met with oncologist for first time after tumor removal.

Postby skypup » Thu Dec 05, 2013 9:12 am

Jason, I had three years of being potentially curable before I joined the ranks of the incurable. Even having had that time, it was a difficult transition. And here you are facing it straight out of the blocks. Will you have limitless time ahead? Sorry, no. But can anyone tell how much time you'll get? Nope. I've had three years incurable and it looks like I can count in a couple more. There are good people who unfortunately pass on in a year, but many of us here have fought well, with decent quality of life, for four, five, or more years.
Some of the things I have found are: don't expect others to really understand and accept where you are, they want to but simply can't; life gets very, very sweet as one comes to terms with death--get ready for the best of times mingled right in there with the worst of times; rest as you need; I have found it has been a blessing in the lives of those around me to find a way for them to help, even just telling them that text messages cheer me up on the tough chemo days--it's a gift they can give, like your candy bar, that makes them feel good; you are immediately eligible for Social Security Disability and would be approved quickly as of your diagnosis date, but it takes five months to start getting checks, so if you have enough SS bucks in the system think about applying, you can earn an extra $1000/mo and not affect your payments. Of course, if you love your job as some on the board do, SSDI may not be for you.
Finally, to repeat what some have said before, one onc may say there is no hope for future surgery, while a liver surgeon may find a way. I'm so glad your doc is sending you to a liver specialist!
Hugs to you!

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

Re: Met with oncologist for first time after tumor removal.

Postby jdepp » Thu Dec 05, 2013 9:46 am

Jason43 wrote: But she said straight out to myself, girlfriend and family that as of right now we are not even close to those goals. I was prepared to make a regimented diet while on chemo so that my body would be ready. I was ready to do whatever it took.


That seems right to me. I'd stick with that sentiment for now and forget about trying to solve the problem of mortality and life expectancy -- it's not solvable.

More immediately: you don't know what chemo will do but the odds are quite good that you'll get a response. There are a lot of weapons to use against colon cancer, so even if the first doesn't work, the second line might.

Having been in your shoes (see my signature) I'd recommend going all in for the chemo and telling yourself that you can't worry about what's happening in your liver until you get the next scan. Until then, your time is basically your own -- you have to give some of it to chemo, but most of it is yours.
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

stephenlamb
Posts: 148
Joined: Wed Aug 29, 2012 6:41 am
Location: ohio

Re: Met with oncologist for first time after tumor removal.

Postby stephenlamb » Thu Dec 05, 2013 10:13 am

My wife was told absolutely no resection stop asking about. So off to other onc at bigger hospitals the next to said the same. Made our way to msk and guess what she has had the first of a two part resection and the second being n five days. She uncountable Mets so anything is possible. Put the boxing gloves on and kick some butt
Wife age 29 dx 7/5/12 stage 4
Mets liver ovary
Hai pump Feb15 2013 folfiri start
1st stage liver resection Aug 13
2nd stage liver Dec 10 ned just 5fu
3/14 peritoneal met folriri/erb

janderson
Posts: 679
Joined: Tue Mar 27, 2012 11:46 am

Re: Met with oncologist for first time after tumor removal.

Postby janderson » Thu Dec 05, 2013 11:15 am

Definately seek a second and even a third opinion. Dont give up and don't worry about cure. I have had 3 liver resections with poteential of cure but I don't worry about that anymore. Cure is too overwhelming of a word for me now after 8 years of fighting. I look at my condition as a chronic disease as many do. Its about surviving another. Another day closer to a new treatment or dare I say cure. I have seen several new treatments an proceedures come out in just the 8 years that I have been fighting some of which I haven't had to use yet. But its nice to have other weapons in your aresenal.
DX 10-05 stage IV
liver resection 12-05 Folfox1-05 to 7-06
Liver resection 8-07 Folfiri 9-07 to 3-08
Liver resection 12-11
Recurrence 2/7/2014, liver, chestwall mets, 16 rounds chemo
7/3/14, y90 radioembolization, steady shrinkage
12/8/14, cryoablation to liver and chest wall
6/1 to 6/26 SBRT radio surgery
7/2 more cryo ablation to right lung
7/16 lung infection drain tube installed
9/4 chest wall resection to remove 2 ribs

radnyc
Posts: 446
Joined: Tue Apr 06, 2010 6:32 pm

Re: Met with oncologist for first time after tumor removal.

Postby radnyc » Thu Dec 05, 2013 11:32 am

Jason, tough words to hear. But now is not the time to fold, it's time to work. I for one believe that diet, exercise and state of mind play a critical part in how we survive this disease. This is my opinion, based on my experience, I'm not implying every one feels the same. I would not just eat what I want, tasty food. Eat healthy, organic, cut red meat. Exercise, daily, at least one hour, run, walk. Supplement, Vit D, PSK mushroom, Milk thistle, aspirin. Take care of your inner self, wether you're religious or not. Meditate, breathe. I kept telling myself that I would survive this, everyday. So far, so good. And get yourself another opinion, I still strongly suggest you go to MSK, see what they say about using the HAI pump. DON'T GIVE UP!

Peace,

A
DX Jan 2010, at age 47
Feb - colon resection - 2/17 nodes positive
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April 2011
HAI Pump removed Dec 2015

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chrissyrice
Posts: 1171
Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

Re: Met with oncologist for first time after tumor removal.

Postby chrissyrice » Thu Dec 05, 2013 11:50 am

Oh Jason, I am so sorry that you are going though all this. Your post sure touched my heart and your son is even more amazing as well.

So how do you feel physically... before you heard what the doctor told you? You have a choice to fight or to just sit back and eat anything you want. You are in charge here. No not ever forget this about your health. Choose to eat well and get the fluids you need to heal. Healing doesn't always mean cured... but you can have lots of quality of life and live with cancer.

It's not easy but there are other options you can explore before you make the decision that you are not going to fight this cancer. So many people here have been exactly where you are at and have had a good outcome.

I think what you have posted here is how we all have felt and I think your doctor was giving you the facts as to where you stand right now... but also said to see the liver surgeon. Chemo can get you to a liver resection, but it takes time and lots of support.

We will support you and understand exactly how it feels to have cancer.
DX 10-31-09 Surgery 12-1-09 Sigmoid Colon
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months

some
Posts: 578
Joined: Thu Jul 05, 2012 1:39 pm

Re: Met with oncologist for first time after tumor removal.

Postby some » Thu Dec 05, 2013 12:31 pm

Jason,

PRETTY PLEASE with sugar on top, consider Dr. K at MSK. I've been around here since July 2012 and I have heard MANY great things about her. She really specializes in the liver and she may be able to help you. Look up Jack&KatiesMommy and read her posts. I'm pretty certain she was told she would never get to resection, but Dr. K pushed and treated her and she did! You need an advocate like that so you can know you are doing everything possible to be there for your son. I know they are top notch at Dana Farber, but a lot of people poopoo the HAI pump and Dr. K. has made miracles happen as far as I can tell. Kepp pushing on, one day at a time. You can do this even if you hate the reality of cancer like we all do.

memberlist.php?mode=viewprofile&u=71560

Good luck!!!

Serena
DH (age 41) diag Stage IV mets to peritoneum - July 2012 (undetectable on CT PET or MRI)
Folfox 7 & Avastin started July 2012 CEA, CA 19-9 not indicators
HIPEC surgery 1/18/13
Folfiri/Erbitux - March 2013
Lots of prayers.

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

Re: Met with oncologist for first time after tumor removal.

Postby gfpiv » Thu Dec 05, 2013 1:20 pm

Jason,

I wish I had more time to craft a response, but I strongly second Serena's suggestion to contact MSKCC for a consult, specifically regarding whether or not you might be a candidate for the HAI pump. So many people with mostly liver-limited disease have had great results with it, even after being told they would never be resectable and/or having their local onc poo-poo the efficacy of the pump. Bottom line is that it's probably the main reason I am alive today. Best of luck with your treatments either way. Believe it or not, although treatments can indeed be really rough, you will eventually be much more mentally able to cope with being in battle with many of the rest of us...and still get as much enjoyment from life as you can.

-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

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Met with oncologist for first time after tumor removal.

Postby justin case » Thu Dec 05, 2013 4:40 pm

Jason you have a wonderful son. I would like to answer some questions. You need to do chemo before the doctors can do anything with your liver tumor. While on chemo, if you have read many things we ourselves have posted, eat whatever you want, just eat, you will need the strength. You need to hydrate, whether you feel like it or not. If you can't eat, drink Ensure to get protein. And I'll add this as it happened to me, you can get an iron boosting infusion along with your chemo, and it helped me immensely. I forget the name of the drug, and also I don't know if it can be given with liver involvement, butt put it on your list of questions for the doc. As you have experienced, sitting around not being able to do anything after surgery, sure does boggle the mind. You'll have a better outlook, when you know what the final treatment plan is. In the meantime, ENJOY EVERY DAY, even though you hurt all over 8)
Regards,
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

pfCml73183
Posts: 653
Joined: Sat Jun 22, 2013 7:49 pm
Facebook Username: Celeste Marie Comeau
Location: FL

Re: Met with oncologist for first time after tumor removal.

Postby pfCml73183 » Mon Dec 09, 2013 11:02 am

Jason, just checking in to see how you are doing?
Also there was an article in the Boston Globe Sunday about nutrition for cancer I thought you might like.
Peace and love, Celeste
Wife and BF to Peter, 54
mCRC/IV/BRAF+
Erbitux and Urelumab trial @MSKCC 3/15
went home 5/8/15

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Jack&KatiesMommy
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Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Met with oncologist for first time after tumor removal.

Postby Jack&KatiesMommy » Mon Dec 09, 2013 12:57 pm

Jason:
Here is my story.....I strongly suggest that you contact Dr. Kememny asap....she is an angel to those of us given no hope by other doctors:

I was diagnosed with Stage IV Colon Cancer in August 2011 at the age of 47. The doctor told me (in front of my husband and 4 year old and 8 year old babies) that without treatment I had months to a year to live and that WITH treatment (chemo as my liver had numerous tumors on both sides which meant surgery was not an option) I had 1 year to 22 months to live. I cried and the Doctor said, "What? Treatment can double your survival time."

I started chemo...and got a second opinion at MD Anderson. My CT Scans showed that I responded so well to the chemo that a liver resection was then possible. On March 15, 2012....I went in for a liver resection at MDA only to awaken from surgery to find that the procedure was aborted since they found my liver peppered with tiny sub centimeter tore everywhere....again...no hope was offered.

Before returning home from MDA I had already made contact with Dr K at MSKCC and she gave me hope...saying we may be able to help you with the HAI pump. On May 2, 2012, I had the primary resected from my colon (although the surgeon questioned this since I wasn't curable...why worry about the primary?) and had the HAI pump installed.

I used the pump for @ 7 months...and it looked like a liver resection was again possible! However the surgeon was very concerned that they would find the same innumerable tiny tumors peppered throughout my liver if we proceeded. In February 2012, they performed an ablation procedure on a tumor on the right side of my liver that was too close to an artery to attempt surgical removal. This went well, but the surgeon remained cautious saying it was likely we were going to find a lot more cancer than we can see via the CT scan and the MRI.

CURRENT STATUS: liver resection performed on April 16, 2013 at MSKCC. Everyone amazed! No evidence of additional cancer in liver. Surgeon removed the entire left side of liver (which had two tumors remaining and had begun to grow again) and removed one small tumor on the surface of the right side via wedge resection. No one could believe this. They did ultrasound of liver during surgery....biopsies, examined again...nothing!! Surgeon says he can't believe it but he was able to remove all of the cancer from my liver...which no one ever thought was possible.

I hope this gives you hope Jason.....
Cynthia
Mommy to Jack (8) now (18) and Katie (4) now (14)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

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j'swife
Posts: 76
Joined: Tue Feb 12, 2013 7:06 pm

Re: Met with oncologist for first time after tumor removal.

Postby j'swife » Mon Dec 16, 2013 11:14 pm

Jason,
We all can sympathize with the exhaustion and worry making it so hard to challenge doctors and do research we are not experts to understand. But consider how many many members of this forum are teling you they or their loved one, like my husband, left doctors who said "your liver is not resectable now,.and the only cure for colon cancer that is in the liver [those are tumors, not lymph nodes] is taking out (resecting) the tumors there. SO sorry." Many of us went to MSK to get the HAI pump, and that changed the whole prognosis. Will you feel you did everything possible if you do not look into it by contacting Dr Kemeny's team? Maybe you will be turned down, which would be AWFUL, but at least you will have tried. We all recognize the experience you are having with your oncologist and other medical personnel and we really remember how horrible it was ; by contrast, we now are SO thrilled to have found an alternative and real hope...and/or to have bought more time..

Actually, to be fair I must say our original oncologist was an exception who encouraged us to go to MSK and, based on the research and my husband's experience is now referring all his patients in this situation of being unresectable up to MSK.
Send me a private message if you would like me to send some medical journal articles Dr Kemeny and team wrote about their results. Dense reading for sure..
Wishing you strength and peace along with the best medicine can offer!
Meg
DH 63 12/12 unresectable liver mets. 2/13 Ffx-Avstn fail. 4/13 HAI pump@MSK. 8/13 mets 50%;Resectn & LAR 10/13.NED! Folfiri & FUDR. reversal 4/14. 3 lvr spots 10/14. 5FU+FUDR. 5/15 resectn/IRE . 7/15 lung 'thingy' 9/15. FUDR, Xeloda. HFS. 2/16 RFA of lung met. FUDR/IRI. 4/16 2 lung 1pelv spots. XEL, stop FUDR. 6/16 RFA 2of 3 mets. XEL. D.10/3/2016 of infection post surgery to remove aortic clots (rare Budd-Chiari syndrome) in local hospital. HAI success! then blindsided...

Ashley272203
Posts: 35
Joined: Mon Mar 11, 2013 11:45 am
Location: Ohio

Re: Met with oncologist for first time after tumor removal.

Postby Ashley272203 » Tue Dec 17, 2013 9:35 am

Jason. My husband stephen posted on this as well. After being told may times by many oncs that i would never b operable, I just got out of the hospital yesterday from my liver resection with the news that they think they got out all evidence of disease. My third surgery this year.
I truly encourage you to seek other opinions. I spoke to so many people in so many states. Its a lot of work but I look at where I was an where I am now. We fly from ohio to nyc at least once a month. Check out corporate angels network on flight assistance. Miracle house is a place n nyc to stay on the cheap. My onc is Dr Nancy Kemeny at msk, try an get an opinion from her. U have today to enjoy so enjoy it!
Wf of StephenLamb ~ dx 7/ 5/12~ 20+ mets to liver, rt ovary
8/12 - 1/13 folfox 2/13 HAI pump, rmvd prmy tumor, rt ovary ~ 0 of 19 nodes + 3\13 Folfiri
8/20/13 70% lvr rsctn. Some tumors rmvd 100%dead
12\10\13 2nd lvr rsctn,50-60%~ full hysterectomy.


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