Newly diagnosed 36 yo male with stage IV

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del
Posts: 111
Joined: Thu Mar 03, 2016 11:21 pm
Location: Sydney, Australia

Re: Newly diagnosed 36 yo male with stage IV

Postby del » Tue Dec 18, 2018 10:58 pm

Rock_Robster wrote:I got second opinions from Dana-Farber and another smaller centre, and have one underway with MSKCC for my peace of mind. All generally aligned so far, but of course it’s early days.


Hi Rock Lobster, sorry to hear about your recent bad luck. Hope the DVT is not too painful and heals up quickly. I'm in Australia too and just curious how you got second opinions from Dana-Farber and MSKCC? Did you fly to the US or are you doing this remotely somehow? And I'm assuming it would not be covered by Medicare/insurance so you are paying for this out of pocket?
Male, 33 @ dx, stage 1 RC (T1N0M0 0/29 LNs)
2016-02 - Cancerous polyp removed during colonscopy, 0.5 mm margin
2016-03 - ULAR & TME surgery, temp ileostomy
2016-04 - DVT, pulmonary embolism
2016-11 - Ileostomy reversal
2018-10 - Another DVT & PE

Rock_Robster
Posts: 394
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Newly diagnosed 36 yo male with stage IV

Postby Rock_Robster » Thu Dec 20, 2018 2:23 am

del wrote:
Rock_Robster wrote:I got second opinions from Dana-Farber and another smaller centre, and have one underway with MSKCC for my peace of mind. All generally aligned so far, but of course it’s early days.


Hi Rock Lobster, sorry to hear about your recent bad luck. Hope the DVT is not too painful and heals up quickly. I'm in Australia too and just curious how you got second opinions from Dana-Farber and MSKCC? Did you fly to the US or are you doing this remotely somehow? And I'm assuming it would not be covered by Medicare/insurance so you are paying for this out of pocket?


Hi Del, both MSKCC and Dana-Farber do Remote Second Opinions which you can start via their website. No doubt this isn’t the same as being seen in person but it did help my peace of mind without yet having to travel to the US. Of the two, I found the MSKCC opinion to be a bit more helpful, faster turnaround, and also a bit cheaper.

As far as I’m aware Medicare doesn’t cover it; for insurance however probably best to check with the insurer directly - mine did but it was an international fund so may not be the norm. Good luck and let me know if I can be of any help with this.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

del
Posts: 111
Joined: Thu Mar 03, 2016 11:21 pm
Location: Sydney, Australia

Re: Newly diagnosed 36 yo male with stage IV

Postby del » Thu Dec 20, 2018 11:07 pm

Interesting. I didn't realise remote second opinions were possible and it didn't even occur to me to check when I was seeking opinions. Good to know for future.
Male, 33 @ dx, stage 1 RC (T1N0M0 0/29 LNs)
2016-02 - Cancerous polyp removed during colonscopy, 0.5 mm margin
2016-03 - ULAR & TME surgery, temp ileostomy
2016-04 - DVT, pulmonary embolism
2016-11 - Ileostomy reversal
2018-10 - Another DVT & PE

crazeekahl
Posts: 2
Joined: Sun Dec 30, 2018 9:04 pm
Facebook Username: kath.clark

Re: Newly diagnosed 36 yo male with stage IV

Postby crazeekahl » Sun Dec 30, 2018 10:40 pm

We too are in Melbs. It is still crazy for us & our head continues to spin. My husband has just completed round 4 chemo. His liver is inoperable atm. We are hoing for big changes.......
Care Giver to Husband @ 47 yrs
2 x Adult kiddies 20 & 22 yrs
Gastroscope 16/10/18
Colonoscopy 17/10/18
Abdo UScan 18/10/18
PET Scan 25/10/18
Nuclear Liver Scan 1/11/18
Power Port 2/11/18
Bowel Cancer dx Oct 2018
Liver Mets x 30
Chemo: Folfoxiri + Avastin
Hx: Mitral Valve Replacement @ 29yrs
Clexane x 2 daily (Warfarin ceased)
CEA - Onco tells us reduced and in normal range.

Rock_Robster
Posts: 394
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Newly diagnosed 36 yo male with stage IV

Postby Rock_Robster » Mon Sep 23, 2019 9:23 am

crazeekahl wrote:We too are in Melbs. It is still crazy for us & our head continues to spin. My husband has just completed round 4 chemo. His liver is inoperable atm. We are hoing for big changes.......

Hi crazeekahl, I’m sorry I just realised in the chaos of my initial diagnosis I never responded to your message above. I hope you and your husband are doing well, and have had positive news in the meantime. Also hope you survived the Melbourne winter, and maybe even are Tigers fans :D
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal


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