Need Support - Told today I'm on Palliative Care

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mariane
Posts: 676
Joined: Sun Sep 13, 2015 6:16 pm

Re: Need Support - Told today I'm on Palliative Care

Postby mariane » Mon Jul 29, 2019 2:28 pm

Good luck! I signed palliative care papers 4 years ago. My twins were 6 and I was 40. I am still here, doing good. I wish you best of luck!
mom of now 10 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!

tbt4snow
Posts: 26
Joined: Sat Oct 27, 2018 3:16 pm
Facebook Username: Tina tran

Re: Need Support - Told today I'm on Palliative Care

Postby tbt4snow » Wed Aug 21, 2019 5:57 am

Hi Nynessie,
You under went a huge surgery, I Hope all is well for you. Let us know how you are doing when you are up to it.
Take care.
DX: CC stage 4/w ovaries & omentum mets in 12/17 49/F
High grade pT3N1bM1b sigmoid Adenocarcinoma colon
MSS-h TMB=16, NRAS-mutant
Lymph nodes: 1/2 left colic; 3/8 regional
12/2017: Exploratory laparotomy & resect of sigmoid & ovaries
Folfox/avastin 12 sessions from 1/8-6/18. 6/18 CEA 2.1
1/19: CT shows peri mets;
CEA: 12/18 5.1, 1/7/19 7.9; 1/15/19 9.1; 1/30/19: 10.6
4/3/2019 CRS/HIPEC after 4 Folfiry sessions...

nynessie
Posts: 20
Joined: Mon Jun 25, 2018 1:39 pm

Re: Need Support - Told today I'm on Palliative Care

Postby nynessie » Sat Sep 07, 2019 7:34 am

One month ago I had my CRS-HIPEC surgery. Cannot believe it's been a month already.

So far nothing to report, except that my husband tells me that when the surgeon came out to see him afterward, he said things went well and he was positive he'd gotten 99% of it. It was a long surgery - I went in at 8am, and my husband said the doctor came out around 8-8:30pm. Paul was able to see me once I got into the ICU at 10:30pm. He deserves a medal. He said the hardest part was the lack of progress reports all day.

I am looking forward to seeing Dr. Cusack on Monday, and will also see my oncologist Dr Jeff Clark. I'm not sure about everything that was done - though know it included sigmoid, liver, small intestine, diaphragm resections with a complete hysterectomy. I've an incision a little longer than 13 inches with about 48 staples.

I am doing well, at least with the PT and napping parts. :)

Thanks for everyone's support, and I will update next week.
06/2018 KRAS negative for mutation; PDL1 negative, CEA 22.7
07/2018 - 07/2019 -- 5 rounds FOLFOX; 19 rounds FOLFIRI
08/05/2019 CEA 2.9; CA125 13; CA19-9 113
** 08/07/2019 CRS/HIPEC surgery (PCI 25 pre-op; 4 post-op)
12/19/2019 CEA <0.5, CA125 36, Scan no change

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juliej
Posts: 3078
Joined: Thu Aug 05, 2010 12:59 pm

Re: Need Support - Told today I'm on Palliative Care

Postby juliej » Mon Sep 09, 2019 4:44 pm

nynessie wrote:One month ago I had my CRS-HIPEC surgery. Cannot believe it's been a month already.

So far nothing to report, except that my husband tells me that when the surgeon came out to see him afterward, he said things went well and he was positive he'd gotten 99% of it. It was a long surgery - I went in at 8am, and my husband said the doctor came out around 8-8:30pm. Paul was able to see me once I got into the ICU at 10:30pm. He deserves a medal. He said the hardest part was the lack of progress reports all day.

I am looking forward to seeing Dr. Cusack on Monday, and will also see my oncologist Dr Jeff Clark. I'm not sure about everything that was done - though know it included sigmoid, liver, small intestine, diaphragm resections with a complete hysterectomy. I've an incision a little longer than 13 inches with about 48 staples.

I am doing well, at least with the PT and napping parts. :)

Thanks for everyone's support, and I will update next week.

Thinking about you today and hoping you get a good report from your surgeon and oncologist. You might ask for a copy of the pathology report so you can see what all was removed, extent of clear margins, etc.

I had 54 staples so I know how you feel! It looked like I had a giant zipper going from my breastbone to my pubic bone! :D

Eat lots of protein to speed up the healing process. You are right about your husband deserving a medal. I think it's hardest on the ones in the waiting room. We sleep through the whole thing! :D

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

nynessie
Posts: 20
Joined: Mon Jun 25, 2018 1:39 pm

Re: Need Support - Told today I'm on Palliative Care

Postby nynessie » Wed Oct 02, 2019 4:35 pm

Reports are coming in from my surgery at MGH...

Pathology says all the margins are clean. YAY!

Molecular Diagnostics:
NO amplification of the HER2 gene.
Immunoreactive for MLH1, MSH2, MSH6 and PMS2 - consistent with a microsatellite stable tumor. [MSS]
POSITIVE for variant(s) in SMAD4, APC and KRAS. [mutated not wild]

It's the last one we were interested in, given the two previous reports (from a different hospital) showed both mutated and wild, so we couldn't decide on a treatment. This means I'm not a candidate for the EGFR therapy. I see the oncologist next week and I'm sure we'll come up with a chemo treatment. Not thrilled I am still going to have to do this every 14 days, but it is what it is.

I'm doing fine at the moment, trying to gain weight, and beginning to get braver with my food choices. My body seems to be following a path of its own, with my emotions all over the place, and I'm hoping it's just a little more time before everything settles down. Physical therapy is fantastic, and I'm very glad I am doing this. I go twice a week, working on my posture, endurance, stability, and strength. A lot of walking too. Surgeon has not signed off yet on any exercise involving my abdomen. Staples are out, and of the two dozen or so steri-strips, only five stubbornly remain.

I'm hoping I can get back into my normal clothes soon as it's getting cold here in the northeast. I am rather tired of my two pairs of baggy sweatpants. Also find it funny how much I want to wear a bra again. Darn incision went a little higher than he said, so the bad is just a bit too tight. Anyway, I've set Friday as my day to try on some fall clothes. Wish me luck!
06/2018 KRAS negative for mutation; PDL1 negative, CEA 22.7
07/2018 - 07/2019 -- 5 rounds FOLFOX; 19 rounds FOLFIRI
08/05/2019 CEA 2.9; CA125 13; CA19-9 113
** 08/07/2019 CRS/HIPEC surgery (PCI 25 pre-op; 4 post-op)
12/19/2019 CEA <0.5, CA125 36, Scan no change

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juliej
Posts: 3078
Joined: Thu Aug 05, 2010 12:59 pm

Re: Need Support - Told today I'm on Palliative Care

Postby juliej » Wed Oct 02, 2019 7:23 pm

nynessie wrote:Pathology says all the margins are clean. YAY!

YES!!! That's the best news ever! :D :D :D

nynessie wrote:I'm doing fine at the moment, trying to gain weight, and beginning to get braver with my food choices. My body seems to be following a path of its own, with my emotions all over the place, and I'm hoping it's just a little more time before everything settles down. Physical therapy is fantastic, and I'm very glad I am doing this. I go twice a week, working on my posture, endurance, stability, and strength. A lot of walking too. Surgeon has not signed off yet on any exercise involving my abdomen. Staples are out, and of the two dozen or so steri-strips, only five stubbornly remain.

I'm hoping I can get back into my normal clothes soon as it's getting cold here in the northeast. I am rather tired of my two pairs of baggy sweatpants. Also find it funny how much I want to wear a bra again. Darn incision went a little higher than he said, so the bad is just a bit too tight. Anyway, I've set Friday as my day to try on some fall clothes. Wish me luck!

I had to go "commando" in the bra area too. The girls weren't thrilled with the idea, but the incision was just too sensitive to have anything touching it. When you get those last steri-strips removed, you can start wearing more normal pants. Warning: I was horrified when I went to buy new pants right after my surgery and saw my bruised and swollen abdomen in a dressing room mirror. :shock: Just realize it's part of the healing process and try to ignore it. Pick out something in a color you love that fits you and makes you feel good about yourself. They strongly discourage any ab exercises for at least 3 months though. But it's fantastic you're doing physical therapy! And walking can't be beat for strengthening your core.

I had a hard time regaining weight too. Keep trying different foods and see what tastes good. And don't forget to make sure you're eating lots of protein to help with the healing process. You're doing fantastic! Keep up the excellent recovery!

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

nynessie
Posts: 20
Joined: Mon Jun 25, 2018 1:39 pm

Re: Need Support - Told today I'm on Palliative Care

Postby nynessie » Wed Dec 18, 2019 11:02 am

So... GOOD NEWS! I remain chemo-free for now. :D

I met with both surgeon and oncologist this week for my 4-month post-op appointment.

The scan report shows there are still cancer cells present, but they are not doing anything. Just sitting there. :D

No limitations on movement, exercise, or what I can lift other than to avoid anything that hurt.

Last out-patient PT is end of the month, and I'll be on my own in the gym twice a week starting 2020.

I return to see my Boston Oncologist at the end of March. In the meantime we watch markers.
06/2018 KRAS negative for mutation; PDL1 negative, CEA 22.7
07/2018 - 07/2019 -- 5 rounds FOLFOX; 19 rounds FOLFIRI
08/05/2019 CEA 2.9; CA125 13; CA19-9 113
** 08/07/2019 CRS/HIPEC surgery (PCI 25 pre-op; 4 post-op)
12/19/2019 CEA <0.5, CA125 36, Scan no change

teresajj1
Posts: 42
Joined: Sun Mar 27, 2016 7:36 pm
Location: Florida

Re: Need Support - Told today I'm on Palliative Care

Postby teresajj1 » Sun Dec 22, 2019 12:10 pm

I'm so happy for you! I remember how worried you were about the surgery and look at you now! :D

I'm hoping for a repeat cytoreductive surgery in the Spring. They are making me do 6 rounds of chemo first this time :x , but it should eliminate chemo post op.
Dx 3/16 @ 36yrs Stage IIIB
RT Hemi-colectomy
T3N1M0. 2/37 lymph nodes
4/2016 Started 12 rounds of 5 FU & Oxi Chemo
7/2016 Stopped chemo after 5 rounds due to chest pain
8/2017 MUYTH Gene
10/2017 Clear CT Scan; CEA 1.9
5/2018 CEA 447
6/2018 Stage IV w/drop metastases to peritoneal cavity
7/2018 Cytoreductive surgery & Hipec (3 tumors, 2 nodules on bladder, and ovaries removed)
05/2019 Clear CT
10/2019 2 new nodules in pelvic area/CEA 19
11/2019 6 Rounds of Chemo

radnyc
Posts: 419
Joined: Tue Apr 06, 2010 6:32 pm

Re: Need Support - Told today I'm on Palliative Care

Postby radnyc » Sun Dec 22, 2019 3:33 pm

Great news!! Happy for you.
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
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 '11
HAI Pump removed Dec '15

Lolly
Posts: 5
Joined: Sun Oct 07, 2018 2:04 pm

Re: Need Support - Told today I'm on Palliative Care

Postby Lolly » Sun Jan 05, 2020 8:46 am

The power of sharing on this forum is absolutely astonishing.

From "no surgical option, that I would likely not survive surgery, and that I was on Palliative Care" to your surgery and outcome here is amazing.

Vana3
Posts: 18
Joined: Tue Aug 13, 2019 11:40 am
Facebook Username: ma

Re: Need Support - Told today I'm on Palliative Care

Postby Vana3 » Tue Jan 07, 2020 11:22 pm

So so happy for you!!!!
36 year old mom of 3 kids (10 year old twins and a 6 month old)
T4aN2M1
5 cm tumor in cecum removed with clear margins
17 out of 45 lymph nodes positive
1 cm omental deposit removed
LVI present
Negative for PC
negative for Lynch
prior to surgery CEA level 5, post surgery 4.2
MSS, KRAS g12d, Braf WT
Mutational burden: 10.9
8/20/19 more scans (CAT, MRI. PET) showed small spots on right lobe of liver, peri aortic LN suspicious
9/04 second round of folfox with Avastin added on 9/18
1/02/20 CEA 3.6

nynessie
Posts: 20
Joined: Mon Jun 25, 2018 1:39 pm

Re: Need Support - Told today I'm on Palliative Care

Postby nynessie » Thu Jan 09, 2020 12:18 pm

2020! January no medical tests or appointments scheduled. February only has a port flush scheduled. March is local ONC, labs, scan, and the Boston ONC.

12/02/2019 labs showed CEA 0.6, CA19-9 12, CA125 50. Cause for concern, so the CEA125 was redone 12/19/2019 and came back at 36. :)

Last PT was end of December, and I went to the local gym for the first time to start my on-my-own workouts. Even got my husband to agree to let me drive once the roads cleared of the last snow. My 2-lb and 3-lb hand weights arrived and I was all set to begin my total on-my-own PT.

I got to drive for the first time since end of July on Tuesday. Yay! Except...
I followed the transport carrying my husband to the local hospital. He'd fallen on our back steps on his way to the gym. Nothing broken. He's wearing an immobilizer and using crutches. He has an appointment with the orthopedist Friday.

My revised PT workouts:
Lifting his leg several times a day. Whatever he did to it resulted in his inability to lift it at all. I'm sure his leg weighs more than my little weights.
Steps on my watch are totally at least 1 mile per day. Stairs are at least 5 flights. (14 steps up to our 2nd floor.)
Drove daughter to school (she's assisting in a classroom today) and I was amazed at the muscles it took to scrape snow and ice off the car. Ouch.

Other than not being able to return to work at the moment I am doing fine in my new role as caregiver. We'll know more Friday as to the extent of his injury and what the near future looks like. For now I keep him from doing crazy things, make lots of tea, and have time to sort through my mom's boxes which has been sitting in my office area almost 2 years. All is good.

Wishing everyone a healthy new year!
Agnes
06/2018 KRAS negative for mutation; PDL1 negative, CEA 22.7
07/2018 - 07/2019 -- 5 rounds FOLFOX; 19 rounds FOLFIRI
08/05/2019 CEA 2.9; CA125 13; CA19-9 113
** 08/07/2019 CRS/HIPEC surgery (PCI 25 pre-op; 4 post-op)
12/19/2019 CEA <0.5, CA125 36, Scan no change


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