Need Support - Told today I'm on Palliative Care

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nynessie
Posts: 11
Joined: Mon Jun 25, 2018 1:39 pm

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

Postby nynessie » Mon Jun 10, 2019 6:53 am

Updates:
(1) The hospital is hiring a full-time oncologist in July. :) Finally don't have to see a different onc every three months.
(2) Saw the latest onc (#4 for me in a year) May 30. Long story short he looks up from papers he is reading, asks if we'd seen a surgeon. No, we say, a little confused. Ah, he says. Reads the papers again, making them with a red pen. He looks at us and says: I think you might be a candidate for surgery, and explains the HIPEC surgery to us. Finished with saying we should think about it, and that he, unfortunately is a locum, and is there really only to approve my treatment each time. He recommended we make an appointment with the onc we saw in October rather than wait until sometime in July when the new doctor arrives. We call for an appointment when we get home.
(3) Saw the onc in Burlington June 6. He showed us the scans from September, January, and the most recent one at the end of April. Things look good :) He agreed that I might be a candidate, referred us to someone at Mass General.
(4) Friday morning I spent quite some tie navigating Mass Gen's phone system to secure a medical record number so the onc in Burlington can send my records to the surgeon there. Now we wait.

I will admit that when the prospect of surgery was "pie-in-the-sky" I was not anxious at all. Now I am quite anxious about it. Hubby said there are only a few options -- surgeon calls and says after seeing records I am not a candidate or I am a candidate. If not, we are not any different than before. If yes, then we likely head to Boston for an appointment. He keeps me grounded.
06/2018 KRAS negative for mutation; PDL1 negative, CEA 22.7
07/11 (ONC#1) FOLFOX started; 07/25/2018 FOLFOX+Avastin started
09/05 (ONC#2) Avastin discontinued
10/03 CT-scan showed no improvement
10/04 Appt w/ONC for 2nd opinion, change to FOLRFIRI due to increase in small nodules in abdomen
10/16 FOLFIRI+Avastin; Neulasta; Savaysa (Lovenox) treatment started
02/11 (ONC#3) Avastin discontinued
04/29 CT-scan showed both masses decrease to 8cm (from approx 12cm in June 2018)
05/06 CEA 3.7 :)

stu
Posts: 1103
Joined: Sat Aug 17, 2013 5:46 pm

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

Postby stu » Mon Jun 10, 2019 8:01 am

Hi ,
I have found that the oncologist generally has a rough idea if it’s operable . Holding out for good news for you .
Your husband is doing a great job too .
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 .

tbt4snow
Posts: 18
Joined: Sat Oct 27, 2018 3:16 pm
Facebook Username: Tina tran

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

Postby tbt4snow » Mon Jun 10, 2019 8:48 am

(3) Saw the onc in Burlington June 6. He showed us the scans from September, January, and the most recent one at the end of April. Things look good :) He agreed that I might be a candidate, referred us to someone at Mass General.
(4) Friday morning I spent quite some tie navigating Mass Gen's phone system to secure a medical record number so the onc in Burlington can send my records to the surgeon there. Now we wait.

I will admit that when the prospect of surgery was "pie-in-the-sky" I was not anxious at all. Now I am quite anxious about it. Hubby said there are only a few options -- surgeon calls and says after seeing records I am not a candidate or I am a candidate. If not, we are not any different than before. If yes, then we likely head to Boston for an appointment. He keeps me grounded.[/quote]

I would recommend you to see Dr James Cusack at MGH for hipec. He was my surgeon for crs/hipec in April. He is the best.
Hope more good news coming your way.
Tina.
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...

radnyc
Posts: 368
Joined: Tue Apr 06, 2010 6:32 pm

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

Postby radnyc » Mon Jun 10, 2019 6:03 pm

Don't give up! I know, it's easy to just say that, but, there have been many people who have been told that surgery is out of the question, and have become candidates. Not all doctors/surgeons have the same skill and confidence, sometimes it's a matter of looking a little harder. Sounds to me that cytoreduction maybe an option for you, find the centers that are known for this and make and appointment, I'm pulling 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

boxhill
Posts: 242
Joined: Fri Apr 06, 2018 11:40 am

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

Postby boxhill » Wed Jun 12, 2019 10:07 am

Really glad to read that you are responding to chemo now. I think that there is no doubt that you need to get involved with a real cancer center. It's great that you are consulting with someone at Mass General. I would suggest that if you are going to travel to Boston you might try to get a referral for a consultation at Dana-Farber.

I'm not sure where you live, but assuming that the Burlington you refer to is the one in VT, you should also have options such as Dartmouth-Hitchcock. You really need to be a patient somewhere with better resources.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemicolectomy
11 of 25 nodes,5 of 5 mesentery nodes
5mm liver met removed
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED, 2mm indeterminate lung nodule
11/20/18 CT NED, Lung nodule calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis, CT review shows progression on FOLFOX
12/31/18 Keytruda
6/5/19 Triphasic CT LNs shrunk to normal, Liver node stable


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