how patient should you be

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mike218
Posts: 28
Joined: Mon Dec 07, 2015 5:34 pm

how patient should you be

Postby mike218 » Thu Jan 26, 2017 11:34 am

I keep lurking -trying to absorb other posting, but just looking for more advice
seen at University MD Med Center-was happy there but have liver mets (about 12 small)-they referred me up to Univ. of PA for liver resection/ablation-saw MD 1/4, he advised surgery in March-no date, no follow up apt, no pre-op visit set etc- (and we've called as has oncologist) -starting to feel we are sitting to long on this
past advice has been kemeny @MSK so I've e mailed up there for appt

Am I just being to impatient--I'm starting to realize this liver mets is really serious and may indicate a time line on life... Univof PA doctor was blunt but also glad that we were not throwing in the towel
so question how patient should you be before running for another consult??
mike
Colon Ca surgery 8/28/14-open laparotomy, hemicolectomy, 1 area 1/23 nodes positive, left hemicolectomy site, 10/34 nodes positive
6 months chemo FolFox (oxyplatin held 2 doses neuropathy
T4aN2b--K-Ras positive
2015 scope April clear
CT 3/2015 no disease some lung nodule
CT 7/15 lung nodules stable
CEA up 10.8 in Sept-CEA 19.3 in Oct.
CT/PET November 11mm left para aortic lymph node
HIPEC? proton therapy?
March 2015 Folfiri /Avastin 6 treatments
can't find tumor
May 2015-CEA rising-waiting on tumor

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: how patient should you be

Postby jhocno197 » Thu Jan 26, 2017 12:11 pm

My patience would be exhausted at this point.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

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mypinkheaven
Posts: 459
Joined: Fri May 20, 2016 4:29 pm
Facebook Username: Sally Cunningham
Contact:

Re: how patient should you be

Postby mypinkheaven » Thu Jan 26, 2017 12:13 pm

mike218 wrote:saw MD 1/4, he advised surgery in March-no date, no follow up apt, no pre-op visit set etc- (and we've called as has oncologist) -starting to feel we are sitting to long on this
past advice has been kemeny @MSK so I've e mailed up there for appt

Am I just being to impatient--I'm starting to realize this liver mets is really serious and may indicate a time line on life... Univof PA doctor was blunt but also glad that we were not throwing in the towel
so question how patient should you be before running for another consult??
mike


The MD you saw on the 4th is way too disorganized - he/she hasn't even answered your oncologist's call? That ridiculous. Run, don't walk for another consult.
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

teri3
Posts: 405
Joined: Fri Jan 09, 2015 11:03 am

Re: how patient should you be

Postby teri3 » Thu Jan 26, 2017 2:37 pm

I agree get a consult fast and Dr. Kemeny seems to be the one for liver mets. Good luck and always trust your gut.

Teri
58 yrs old female
MSS KRAS mutation G12V
adenocarcinoma sigmoid colon dx 11-14
sigmoidectomy 11-14
Stage 3A
3 out of 20 lymph nodes involved
started FolFox 1-27-15
11 rounds FOLFOX last one 6-30-2015
7-29-2015 PET clear
5-14-2016 CT 2 nodules one in each lung
Confirmed pulmonary metastasis stage 4
FOLFIRi + Avistin started 8-16 11 rounds complete 12-16
CT 12-16 nodules shrunk chemo break wait and see :?
CT growth
VATS l lung 4 10 17
VATS r lung 4 24 17
CT 2 nodules r up and l low :(

TeamCM
Posts: 12
Joined: Tue Apr 21, 2015 4:42 pm
Location: Ohio

Re: how patient should you be

Postby TeamCM » Fri Jan 27, 2017 1:14 am

Hi Mike,

I am sorry your are experiencing this. You are not being impatient at all.

I would call every day, several times a day if necessary. I would also set up appointments with other oncologists/facilities. You don't have to go if your original plan works out. I find that having several back up plans makes it a little easier when waiting for the next intervention.

I am not patient about anything for my guy when it comes to his illness or treatment. The times I have been, stuff was missed, follow up appointments were not made, certain issues fell through the cracks and metatisies spread. I learned early on that no one is going to make sure you are getting what you need (as far as your trearmenr goes)but you and your loved ones. I sure have upset medical staff along the way. But if it helps my guy then that's ok. I'm not rude but I do hold his doctors accountable for the treatment plan they have recommended.

So to answer the question "how patient should you be"? My answer is not st all. :) This is your life. The cancer sure isn't patient. You shouldn't have to be either.

My heart goes out to you... I wish you the best.
Caregiver to my Guy
DX 4/2015 @ 37
Stage IV Colon Cancer
Colon Resection 4/17/2015, 2/38 Lymph Nodes, 4-6 Liver Mets
Folfox 5/18/2015
Liver resection 8/2015
2 Liver ablations 1/2016, peri mets
Y-90 3/2016 & 4/2016
Failed HIPEC 6/2016, metastasies to spine, additional liver mets, peri mets increased significantly
Folfiri 8/2016
Scans 10/2016 revealed shrinkage, jaundice, chemo reduced
Scans 12/2016 revealed growth, hospitalization
Biliary drain & stents placed 1/2017 but jaundice persists

mom_2_3
Posts: 361
Joined: Sat Nov 29, 2008 8:09 pm

Re: how patient should you be

Postby mom_2_3 » Fri Jan 27, 2017 11:10 am

Mike,

Dr. Kemeny at MSK is the person to see, especially with multiple small mets that would hopefully respond to resection and HAI. I remember as clear as anything the day 2/09/09 when I went to see Dr. Kemeny for scan results after 4 treatments (FOLFOX). Saw her on that Monday and she said my mets were responding and I was heading into surgery the following Friday am (2/20/09). What? Surgery in 9 days? I started to bluster in my response to her and basically she asked if I had anything more important to do than save my life. Um, no.

When I told her we would go ahead with the surgery I discovered she already had the appointment scheduled with the liver surgeon and colon surgeon for that afternoon for pre-surgical consults. It was a frenetic 11 days preparing (cardiac workups, signing authorizations, more bloodwork, colonscopy, preparing my home and family for me to be away for a week, etc). But I had the surgery and remain NED today, almost 8 years later. I have had other similar experiences there. Had a cyst show up on one scan and she already had the ultrasound scheduled for me when I got there for scan results. Walked in one time with a swollen eye (and office staff terrified I had shingles but I had actually gotten Drano in my eye) and I was sent immediately to one of the eye doctors and when I walked into that appointment 1 hour later they had all my records and were ready to see me. I like the efficiency there although it can be somewhat overwhelming.

I love Dr. Kemeny. She is a genius and while not warm/fuzzy, I would recommend her to anyone. My feeling after having been treated there and also from speaking with the staff and other patients is that MSK doesn't (to use vernacular) "F--- Around." If it makes sense and will give you a shot, she will throw the kitchen sink at you.

You are not being impatient. You need to move. Call the appointment telephone number at MSK. Ensure you have all medical records on hand and ready to send over.

Best wishes,
Amy
CC discovered during c-section (11/4/08)
Diagnosed Stage IV 11/10/08 -- Happy 39th Birthday! 5 bilobar liver mets
02/09: Colectomy, liver resection, HAI pump implanted, 7 of 42 nodes
7 months of FUDR and 5FU ended 11/2/09
10 years NED.

kandj
Posts: 308
Joined: Sun Sep 27, 2015 11:29 am

Re: how patient should you be

Postby kandj » Sat Jan 28, 2017 10:08 am

mike218 wrote:
Am I just being to impatient--I'm starting to realize this liver mets is really serious and may indicate a time line on life... Univof PA doctor was blunt but also glad that we were not throwing in the towel
so question how patient should you be before running for another consult??
mike


No, you are not being impatient. In fact, you are being way too patient. You saw this guy over 3 weeks ago and no word? that would not fly. I would run, not walk, to Dr. K. After a bad experience with MD Anderson, our next stop was MSKCC (we are 30 miles from Houston, 1500 miles from NYC). I was calling them as we were leaving MD Anderson in fact. It did take a bit of time to get all his info sent over to them, but from the time I call, to the time we were in the office consulting with Dr. K was about 25 days, DH's HAI pump surgery was scheduled for 5 weeks later ( would have been sooner, but he had had Avastin the week before and they make you wait 6 weeks for surgery after Avastin). He had 4 FUDR treatments to shrink his tumors (Bi-loblar, I think they counted 9-11 on the first scans) and he was ready for his resection. He had that in May, where the surgeon removed all the tumors or ablated them. DH would not be alive right now without MSKCC. Or, if he was, he would still be on chemo, and that would probably have stopped helping by now.

You are your own best advocate. No one cares about your life as much as you do. Do what you have to, everything you can to preserve it.
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (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 lung/adrenal gland recurrence 11/19
Adrenal ablation2/20 Robotic Assisted VATS 3/20 Xeloda again
9/2020 SBRT on Adrenal Met 11/2020 New liver met to deal with

User avatar
HopeForJesse
Posts: 249
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

Re: how patient should you be

Postby HopeForJesse » Mon Jan 30, 2017 8:30 pm

Just echoing all of the above as another MSKCC - Dr. k survivor's wife. Read signature below. Get there as fast as you can. Don't wait because if you get too much chemo you might miss the right timing for them to help. Good luck! Let us know...
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS TP53 APC,BRCA2
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
5/18 5 days SBRT radiation to sternum 10/22/18 surgery to remove zyphoid process met
6/11/19 5FU added to cetuximab and irinotecan CEA 16
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

User avatar
HopeForJesse
Posts: 249
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

Re: how patient should you be

Postby HopeForJesse » Mon Jan 30, 2017 8:31 pm

Just echoing all of the above as another MSKCC - Dr. k survivor's wife. Read signature below. Get there as fast as you can. Don't wait because if you get too much chemo you might miss the right timing for them to help. Good luck! Let us know...
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS TP53 APC,BRCA2
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
5/18 5 days SBRT radiation to sternum 10/22/18 surgery to remove zyphoid process met
6/11/19 5FU added to cetuximab and irinotecan CEA 16
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

mariane
Posts: 687
Joined: Sun Sep 13, 2015 6:16 pm

Re: how patient should you be

Postby mariane » Mon Jan 30, 2017 9:42 pm

I crossed the ocean to seek Dr K's help when I was told that I have unresectable liver mets (largest 7.5cm) and nobody wanted to try to remove them, to give me hope. 10 months after I had my first appointment with Dr K, after my 4th, and last surgery I was NED...

Good Luck!
mom of now 12 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!

mike218
Posts: 28
Joined: Mon Dec 07, 2015 5:34 pm

Re: how patient should you be

Postby mike218 » Tue Jan 31, 2017 10:25 am

thank you all--UofP still without surgical date-or call back---hoping for call back today (my wife can get pushy) and she has run out of patience, have contacted MSK and asked for appt with Kemeny-they took insurance info and waiting on callback-already faxed up some history-MSK had previously said no to seeing me because we used them as 2nd opinion 2 years ago and did chemo with our oncologist (as MSK Basking Ridge said) --now seems like it could happen, hoping to hold Avasitn this week in hope for surgery mid March-that was the target date with UofP so I, hoping someone, somewhere will get the ball rolling-feel like everyday is another day lost (even though we're on chemo)

mike
Colon Ca surgery 8/28/14-open laparotomy, hemicolectomy, 1 area 1/23 nodes positive, left hemicolectomy site, 10/34 nodes positive
6 months chemo FolFox (oxyplatin held 2 doses neuropathy
T4aN2b--K-Ras positive
2015 scope April clear
CT 3/2015 no disease some lung nodule
CT 7/15 lung nodules stable
CEA up 10.8 in Sept-CEA 19.3 in Oct.
CT/PET November 11mm left para aortic lymph node
HIPEC? proton therapy?
March 2015 Folfiri /Avastin 6 treatments
can't find tumor
May 2015-CEA rising-waiting on tumor


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