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Reoccurence #200480
10-11-2020 12:31 AM
10-11-2020 12:31 AM
Joined: Nov 2013
Posts: 34
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Mandy Offline OP
Contributing Member (25+ posts)
Mandy  Offline OP
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Joined: Nov 2013
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Biopsy confirmed cancer again.they done a punch biopsy of my gum.had a pet scan last Friday,will meet the tumour board on Tuesday. Already had salvage surgery 5 years ago..I can't stop thinkng about the surgeons final words as they took me into operating room 5 years he ago..he said this is your last shot.if it comes back there is nothing we can do..I've never forgot it...Already had neck dissection both sides.rafiation both sides,certuxamab as well.i don't k ow what is left for me.


nov 2013 ssc of buccal mucosa stage 2
jan 2014 neck dissection because of cancer in lymphnodes
feb 2014 6 weeks of radiation
march 2015 tumour buccal mucossa stage 4
june 2015 lower jaw removed
nov 2015tumour in left node on neck
jan 2016 radiation and chemo to commence
Nov 2015 left deck dissesction,1 posative node
Re: Reoccurence [Re: Mandy] #200481
10-11-2020 09:34 AM
10-11-2020 09:34 AM
Joined: Oct 2012
Posts: 1,226
Toronto, Canada
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gmcraft Offline
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Joined: Oct 2012
Posts: 1,226
Toronto, Canada
Mandy, I’m so sorry about the reoccurrence. Five years is a long time in terms of drug/treatment development. What was not available five years ago may now be something that’s routinely done. My husband was in a phase 1 immunotherapy trial in 2013 but now it’s something that is regularly given to patients. You will probably learn more when you attend the tumor board. Keeping you in my thoughts.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Re: Reoccurence [Re: Mandy] #200482
10-13-2020 06:02 AM
10-13-2020 06:02 AM
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Posts: 10,498
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ChristineB Offline
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ChristineB  Offline
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Mandy, I’m very sorry to read about your recurrence!!! After going thru OC diagnosis 3 consecutive years I understand what you are going thru. It’s very hard to handle being told the cancer has returned.

The surgeons chat right before your surgery telling you there weren’t any options left for you if the cancer returned definitely would be something all of us would have remembered too. However, don’t ever rule out a 2nd or 3rd opinion! Nobody can predict the future, not even the doc who said you had no other options left. What one doc isnt able to do, does not mean another doctor can’t help you either.

Since the immunotherapy drugs have come out after being fast tracked thru the FDA, maybe some other new methods of managing recurrences is out or almoyready to get approved? I’m sorry but I don’t remember when the first immunotherapy drug that worked for some OC patients. Erbitux, centibumax?, keytruda or one of the other names it goes by has saved a great many patients who may not have had any other options several years ago. It always hurts my heart when patients have no hope left. I always try to see the positive in all situations which some may consider a waste of time or pointless. It sounds like you are already at a CCC. Is it possible to get another opinion at another CCC? There’s help available for free flights and housing if transportation is a problem.

One of the most important things I have learned from being part of OCF actually saved me life. When my third round of OC happened, I was sure there weren’t any options left. I thought long and hard what path would be the best one for my teenaged children after I’m gone. I was convinced I had no chance to survive. Although I didn’t know of a single 3x OC survivor, Brian assured me there are a few 3timers out there. After weeks of weighing options, intense contemplating and coming to my conclusion for the hardest decision I’ve ever had to make, I chose to not seek treatment. This was what I considered to be the easiest for my children. They’d have me with them while I felt strong and healthy to mentally prepare them to live their lives without me. Then I went about making the most of every single day, making positive memories my children would always remember (they still do remember everything from 11 years ago).

My OCF friends refused to hear it! They (especially one person who was especially persistent.... I’ll call her “D”) It took a lot of convincing but it finally sank in. D repeatedly told me I can’t quit before I try to beat it. By giving up and refusing treatment I didn’t actually know if I could survive the 3rd round of OC. Luckily I did get thru it even thought I had a great many complications requiring me to stay in the hospital 2 very long months plus a long hard year of recovery at home. The way everything turned out for me was a big surprise to everyone, especially my doctors. The odds of my survival were less than 20%. who did not expect me to survive such high odds against me.

Of course it’s completely up to you what path you take but please do yourself a favor and at the very least get a second opinion. It can’t hurt to hear what another experienced CCC doc has to say. The comment your doc gave you 5 years ago may not be relevant now. The doc may not remember they even said it unless they marked it on your chart. Hopefully your doc will have some options. I would suggest asking if another opinion is something you should do. That question always brings interesting answers.

Best wishes with your appointment!!!! We’re here to lean on whenever you need to. Sometimes a bunch of strangers who have been thru the same horrific things can offer the best support. Please update us when you can.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: Reoccurence [Re: ChristineB] #200487
10-13-2020 01:10 PM
10-13-2020 01:10 PM
Joined: Nov 2013
Posts: 34
aus
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Mandy Offline OP
Contributing Member (25+ posts)
Mandy  Offline OP
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M

Joined: Nov 2013
Posts: 34
aus
Thankyou.i seen the team yesterday.my pet scan was clear apart from tumour in my mouth.ENT want it taken out but plastics are very concerned about what they are going to put in it it's place as my vessels etc arnt very viable after previous surgery and radiation.thev plastic wreckon that is more extensive then scans are showing,I'm having a general on Friday so they can look in my mouth better..I mentioned clinical trials etc but they brushed me off saying that's palliative not curative..if they don't want to operate doesn't thst make it pallative


nov 2013 ssc of buccal mucosa stage 2
jan 2014 neck dissection because of cancer in lymphnodes
feb 2014 6 weeks of radiation
march 2015 tumour buccal mucossa stage 4
june 2015 lower jaw removed
nov 2015tumour in left node on neck
jan 2016 radiation and chemo to commence
Nov 2015 left deck dissesction,1 posative node
Re: Reoccurence [Re: Mandy] #200489
10-13-2020 03:37 PM
10-13-2020 03:37 PM
Joined: Jun 2007
Posts: 10,498
PA
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
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Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,498
PA
Your reasoning sounds correct to me, it’s exactly what I thought as well. I’m sorry I hadn’t noticed you were from Australia and the advice I gave in my previous reply was directed toward someone in the US. In the US the CCCs are the top facilities for cancer treatment. In Australia, you have a different health system than the YS. If I remember correctly, the Australian system is more like what Canada provides its residents. Several years ago, I had a good friend Gabe from Australia who sadly is no longer with us. All I remember is it sounded like she had excellent coverage but often had long waits for specialists. That was about 7 or so years ago, things could have dramatically changed by now. Please forgive me for assuming you were here in the US! Gabe was one of my OCF friends who convinced me to seek curative treatment before I gave up.

If a second opinion is an option please start making calls as soon as possible. You will need a specialist who has the most experience in this kind of surgery. Not that your current doc isn’t one of the best, just be careful in your selection. What one surgeon does, another might not be able to handle. This kind of surgery is very complex, wayyy too many teeny tiny blood vessels to see up and watch closely to ensure adequate blood flow is working. It’s not something the average surgeon would see on a regular basis. That’s not including the complications of operating on an area that’s been radiated. I suggest asking how many cases the surgeon has per year for this highly complicated surgery.

In the US, HBO (hyperbaric oxygen treatments... laying in a thick clear glass tank in pressurized oxygen) would be added to treatment to help with healing. There’s varying opinions on doing HBO so if thinking of doing this start by asking your current medical team. but for me, it worked great. Also some doctors will say it’s necessary while others say NO WAY!!! due to cancer cells loving all the extra oxygen will grow faster. It’s possible the Marx Protocol of 20 HBO dives before and 10 after the treatment used mostly for extractions if any teeth after having rads. There’s also rads sometimes used. It’s In the US on a case by case basis some patients have had a second round of rads. Make sure you ask about these things cuz you never know what other options may be available unless you bring everything up.

Thru no fault of my doctors, the complications I had from my big surgery left me disfigured. Many would hide in their house but I go out and do whatever I need to do ignoring anyone who stares at me. That is until in the US, it’s mandatory to wear a mask when going out from the Corona pandemic. I’m NOT a fan of wearing it but, boy is it nice to not have everyone staring at me!!! I never stopped doing what I needed to do due to my disfigurement and hadn’t realized it really did affect me. I’m mentioning this just in case it would be possible this could happen in your situation. Ask your doc thrust if any of their patients became disfigured and if yes then how many. Going into this requires a great deal of thought so I’ve tried to put this kind of thing out there just In case it fits your situation. Without having any experience working in the medical profession. By passing along things that could be possible, I’m trying to ensure every single option is mentioned to ask your doc. I’d also suggest asking if your doc can’t (or won’t) do the surgery if they know if another highly skilled surgeon that can do it.... maybe ask them if their own mother needed it who would they send her to.

Best wishes with everything!!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile

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