Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
Joined: Mar 2016
Posts: 7
scg Offline OP
Member
OP Offline
Member

Joined: Mar 2016
Posts: 7
My father,65, was diagnosed in October 2015 of moderately differentiated squamous carcinoma of right upper gingiva , right upper gingivobuccal sulcus. The underlying maxillary bone was involved by tumour. The affected area was surgically removed and local RT was given for 6 weeks. Two weeks ago, PET scan results showed clear head and neck but distinct mets in both lungs - lesion measuring 2.2cm x 1.6cm in right lung lower lobe along the major fissure and another smaller lesion in left lung.

He is diabetic but in good health and has not shown any symptoms of spread to lungs (no breathlessness etc.).

MO is suggesting Metronomic Chemo with Methotrexate and Celecoxib as palliative treatment. MO said no to Cetuximab because "there is only one study which supports its use". He also refused RFA and RT of lungs, "because the lesion is in centre of lung and it is not feasible". Are there any other options? We feel the suggested treatment might be too mild, feels like giving up even before trying.

Also, is resection really not an option in his case? Should we seek another opinion. Appreciate any help!




CG for my father,65, diabetic.
Primary: squamous carcinoma of right upper gingiva. Oct'15.
Surgery+RT, primary clear.
Secondary: both lungs. Mar'16.
About to start treatment for secondary.
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)
Offline
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,024
I am sorry to read this.
I personally would not be happy with the proposed treatment plan. I do urge you to get another opinion , preferably from a Comprehensive Cancer Centre of world renown.
I'm sure someone who lives in the USA will come along soon and point you in the right direction.
Research has proven that these CCC's get better outcomes for their Patients. They deal with these complicated Patients on a daily basis and use a whole team approach with a Tumour Board coming up with the best treatment option.
I wish your Dad the best,
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Mar 2016
Posts: 7
scg Offline OP
Member
OP Offline
Member

Joined: Mar 2016
Posts: 7
Thank you Tammy. We are trying for a second opinion in next couple of days.

I am mainly just confused about why are they not going for a curative treatment, is it normal to jump from surgery to palliative? I was hoping they would give curative treatment a good hard shot first.

Naive reasoning would suggest that resection followed by chemo should be more effective, as chemo would have much fewer cancer cells to kill.

Pardon me if my questions are too basic.



CG for my father,65, diabetic.
Primary: squamous carcinoma of right upper gingiva. Oct'15.
Surgery+RT, primary clear.
Secondary: both lungs. Mar'16.
About to start treatment for secondary.
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Welcome to OCF! No question is too basic. You came here for help and we will do our best to assist you. Read both the posts here and also on the main OCF pages (click on the words OCF Main up towards the top left corner).

A second opinion at a CCC is what I would suggest. Waste no time in getting your father to one of the country's top CCCs. Being in Texas, MD Anderson is one of the very best CCCs in the country.

Im not sure why your fathers treatment plan is for palliative care as a first choice. Please understand our group is made up of caregivers and patients/survivors of oral cancer. We are not medical professionals, we lack years of schooling and training, we also do not know the patients background or test results. Which is why we may not be able to always answer your questions. We will always try our very best to help you.

Heres a couple link that may be helpful. Best wishes with everything!


OCF Main Pages, Treatment Guidelines and NCCN Info


NCI CCC list


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
Joined: Dec 2014
Posts: 55
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Dec 2014
Posts: 55
I would for sure seek another opinion. I have mets to both lungs and was on Erbitux for 4 months. The Erbitux kept the tumors at bay until now. I am now waiting for approval to start immunotherapy. The first drug will be Opdivo. Although only 15-20% of people respond to this treatment, there are many people who have been on it for two years and still going strong. There are also many trials that have different immunotherapy and targeted therapy drugs available. Standard chemo will not cure let alone hardly slow down the tumor progression once it has spread to the lungs. Although my care is still considered palliative, there are many who have pretty much wiped out the tumors on these new treatments.

Please seek out a CCC or at least an oncologist who has been prescribing these new treatments.


Jeff - 41yrs old/previous smoker
SCC buccal mucosa/jaw bone Stage 4
Nov '14 Partial Mandibulectomy with fibula flap, neck dissection
Jan '15 Rads x35 Cisplatin x2
Apr '15 PET/CT concerning area Follow up MRI no mass.
July '15 PET/CT 11mm nodule in right lower lobe the lung.
Oct '15 PET/CT right lung nodule 3cm mass also new left lung nodules
Nov '15 erbitux
Mar '16 CT tumors are growing again, waiting on next step
June'16 hospice had 3 Opdivo infusions trying to regain health
Joined: Mar 2016
Posts: 7
scg Offline OP
Member
OP Offline
Member

Joined: Mar 2016
Posts: 7
Dear Jeff, thank you for your encouraging words. MO has now decided to go with Erbitux. Though he has suggested that side effects could be extreme, as Erbitux is considered toxic. Would you please let me know how your personal experience with the medicine has been.

Not that we have a lot of choice, but it would be good to know. Many thanks again for your help. You have my best wishes for your treatment.



CG for my father,65, diabetic.
Primary: squamous carcinoma of right upper gingiva. Oct'15.
Surgery+RT, primary clear.
Secondary: both lungs. Mar'16.
About to start treatment for secondary.
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)
Offline
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,024
Hello again, I do want to urge you to get another opinion from a CCC such as
MD Anderson. A recurrence of an Oral cancer really does need specialist help from a big centre . One that deals with this on a daily basis and provides cutting edge treatment.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Mar 2016
Posts: 7
scg Offline OP
Member
OP Offline
Member

Joined: Mar 2016
Posts: 7
Thank you Tammy. I should have mentioned before, my dad is in India. I have been looking at CCCs outside (including MD Anderson).

My concern is that on the current plan, he will start his Chemo in 2 days and visa might take 1-2 weeks. If we start the treatment, he might not be able to travel in a long distance flight with his immune system weakened. But if we dont start the treatment, risk is we might not get the visa and this will delay the treatment by roughly 2 weeks.



CG for my father,65, diabetic.
Primary: squamous carcinoma of right upper gingiva. Oct'15.
Surgery+RT, primary clear.
Secondary: both lungs. Mar'16.
About to start treatment for secondary.
Joined: Mar 2016
Posts: 7
scg Offline OP
Member
OP Offline
Member

Joined: Mar 2016
Posts: 7
Just heard back from MD Anderson, they would need five business days to consider whether they can admit us. Once that is done visa will need atleast another 5 days.

If we start chemo before that, they will cancel the application. Does it make sense to wait for what could be 2-3 weeks.

I'm also in touch Harley Street Clinic and Royal Marsden (CCC) in London and have my appointment day after tomorrow. Would anyone please have suggestions for me or if you have any reviews for the two alternatives. Thanks!



CG for my father,65, diabetic.
Primary: squamous carcinoma of right upper gingiva. Oct'15.
Surgery+RT, primary clear.
Secondary: both lungs. Mar'16.
About to start treatment for secondary.
Joined: Mar 2016
Posts: 7
scg Offline OP
Member
OP Offline
Member

Joined: Mar 2016
Posts: 7
First chemo tomorrow morning. Wish me luck!

MD Anderson refused us due to some very vague reasons. But thats not important now.



CG for my father,65, diabetic.
Primary: squamous carcinoma of right upper gingiva. Oct'15.
Surgery+RT, primary clear.
Secondary: both lungs. Mar'16.
About to start treatment for secondary.
Page 1 of 2 1 2

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5