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!
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
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.
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
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.
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.
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
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.
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!
First chemo tomorrow morning. Wish me luck!
MD Anderson refused us due to some very vague reasons. But thats not important now.
If you are still going the route of Erbitux the side effects can vary. Most people including myself had a lot of skin issues. Really dry skin and some pretty bad rashes. The rash was all over the body and was very uncomfortable. I was prescribed some gels and stuff that helped some. Also I had issues with my fingertips and toes. They would get really sensitive and cut open easily. I ended up using the liquid bandage stuff so that I could still use my fingers to grab stuff. Other than that, I didn't really have any more side effects. I am sure that there are some other people with different effects than me.
I would look into Opdivo. I am hoping to start that soon. Still waiting on approval.
Dear Jeff,
Thank you for your reply. I will certainly keep your advice in mind. Yes, we are going ahead with Erbitux. I'm sorry that you had to go through a lot of skin related side effects.
Best wishes,
Ruchi
Hi Ruchi,
I wish your dad well on his treatment plan. I think in general if cancer has metastasized in a distant area, the general prognosis is not so good. In that the docs generally won't state there is a cure. So if not curable but treatable, it falls with the palliative label. I'm sure no doctor but that is the impression I get of the use of the terms curable and palliative.