Hello all

Am a newbie to this great forum and am amazed by the content here...not just the survivor stories, but, every single post and how it shows the great spirit of the patients to fight and to persevere...I hope I would get some real good advice here...

Since I am very new to the cancer terminology, I will try to explain the case in a layman's language...and have attached some reports that summarize the patient's condition...

My maternal uncle (42 yrs) was detected of mouth cancer around 4 yrs ago (2009), when, it was just a blister on his lower lip...it had not spread to the chest at that time...after biopsy, it was found in his left cheek as well...

He started with surgery of his mouth in early 2010 followed by some reconstruction. He then underwent some RT, and, was doing okkish...his cancer came back 2nd time in 2012 and he underwent another surgery...

Biopsy in early 2013 showed no signs of disease, but, another one in June showed the disease had came back...

He then visited India's best known Cancer Speacialist in Mumbai who has done miracles to some patients. This doc got a Pet Scan done that showed the disease came back not only in his mouth, but, also at two more points in his upper chest. He ruled out PDT as a cure and recommened Chemo...but his body langugage didn't show that he was confident with this case...

So, he came back to Delhi and underwent Chemo every weekend in July 2013 except for the last weekend, when his doctor said that it was not working...

This morning, his doctor got a Pet scan done and said a big "No" to the survival. He said my uncle would live anywhere between 2-4 months...

What I can see physically is that he his open wound on his diseased cheek has become bigger (around 3 inches dia) and looks really messy (can't describe in words), and, its causing him real pain...a spot on his chest that was probably cancer has now developed into a 1 cm red spot with pus developing...

He is a true fighter, talks normally (though not clearly), walks, cooks for family, still goes to his work for 2-3 hours per day, but, after this morning, he is feeling totally broken and demotivated...

I still might have messed up the sequence of his treatment, hence, request the learned people to visit the links and give the reports a read and tell me how bad it is...

ADMIN NOTE----**** OCF is made up of fellow patients and caregivers, not medical professionals who can interpret pathological reports. The links removed by admin for privacy reasons. ****

Thanks a ton...

They are saying the cancer is in the nodes of the mediastinum which is usually very bad news - I would be asking how many and if they are removable - surgically - also re his cheek and chest lesions, I take it based on your description that it has broken through to the surface... Not sure why photodynamic therapy wouldn't work since this is ideal for that kind of treatment as it has to be accessible to the light. I would be pushing for removal of more tissue in the areas of the cheek, and nodes of the neck and chest (since by the sounds of it they are superficial and surgically removable. I think the dr. Is thinking as advanced as it is it must be in his lungs on a microscopic level which is likely but everyone is an individual so that may not be the case. If your uncle is insistant on fighting I would find the top ENT/surgical oncologist in your country and ask them to do what they can, and since he's had radiation already (did this include chemo?) they may not offer it to him but depending on location and amount they may be able to squeeze in some more. there is another woman here who is going through a similar situation in India (persistent oral cancer with a still existing open wound - however it has not moved from the location) as well but she is much older, and has recently completed radiation and the cancer is still persistent. Since it looks like its been a few years since treatment for your uncle I would push for this. Best of luck

Ps based on your description I assume they haven't done a biopsy are just basing this off scans - it is possible it could be infection in his nodes, and not cancer, since he still has persistent cancer at the primary, though this is unlikely - I would want to know for sure. Hugs.

Hi Cheryld...

Thanks for your detailed and motivating response....but, I would need some time to answer all your queries...

In the meantime, I visited India's biggest hospital AIIMS, Delhi (a govt. run hospital and famous for great care where doctors known for giving genuine advice without making a hole in your pocket, unlike at private hospitals in India)

I was able to get in touch with a surgeon at surgical oncology department and discuss the case briefly...he said that since, the disease has spread to chest (its something like metastatis, meaning disease at multiple places in body), surgery is not an option...because, once in the chest, the disease would have spread to other parts (if not lungs) at microscopic level...hence, doing a surgery of the chest would not prolong the remaining lifespan of the patient at all...he also added that many clinical trials have been performed around the surgery option but have not yielded results...

I can't comment on this and can only trust him for this...

Additionally, he added that I should see doctors from medical oncology dept. who will give the best advice, like if some targeted therapy or a stronger chemo could help...

so, I have got an appointment for Monday after which I will share the details on the forum for further advise...I will also ask the doc the questions you have asked me...

Will try to get some answers later tonight...

Thanks again

Good luck with the oncology department. I can tell you the outcome of the chest involvement really depends on how involved it is. One or two others here have had lung mets but one had only two nodules - they gave her a clinical trial, and removed one nodule - she is going strong now

Hey guys...

Sorry for not coming back with the response in time...got no time between work and doctor visits...

so, here's a summary of what happened between the last post and today...

1. Med. oncology dept @ AIIMS was super busy, so, saw my uncle for 2 min and suggested FNAC of the superficial lesion/blister on the chest. Result-Negative (Non-malignant cells)

2. Doubt was whether the part highlighted in PET CT (lymph nodes near neck in upper chest) was disease or not. Med. oncology department suggested PET CT guided FNAC of this part. Result-Negative (non-malignant cells)

So, it seemed some relief, but disease is getting worse on the face. Patient is technically candidate for surgery of his mouth/face.

3. Went back to original doctor of patient (surgical onco) to assess surgery. He says surgery would be extensive and patient might lose speech, as the tongue would lose support & recede behind blocking the throat, and, patient will breathe through a tube that would be fitted in his neck for few months. Also, no guarantee that disease won't come back after surgery. So, he suggested Targeted Therapy along with Chemo. If chemo response good in next 2 months, surgery could be considered.
Suggested Chemo: Cetuximab + MTX/5FU + Cisplatin/Carboplatin
Result: Overall, doctor not very positive as cost to success ratio seems too less...since, the previous chemo (Paclitaxel+Biocarb) didn't work at all.

4. We went to another successful cancer hospital for a 2nd opinion (lot of foreigners coming there for treatment too). Met their surgical & medical oncologists...surgical onco did say that surgery would be major but not as bad as told by previous doc. He said, the breathing pipe would be removed in 1-2 weeks post surgery. But, like previous doc, he said that unless he gets some encouragement from targeted chemo (after 2 cycles of 3 weeks each), he wouldn't do the surgery, as disease might come back in a week after surgery...sent us to his medical onco. Medical Onco (one of India's top 5 cancer specialists) suggested target chemo as follows:
Palliative Chemo (Irinotecan + Cisplatin) + Cetuximab
Result: He asked for a CBC/LFT/RFT report to suggest final course of action on Monday.

My Question to fellow forum members: Sorry for the long description, but, need to know if anyone has had experience with the above chemo/target therapies and what kind of side effects did the patients undergo? Has it shrunk anybody's tumors/wounds?

The pain on patient's face is increasing each day and he is getting very demotivated...

Pls also advise if I can post a photo of patient's face wound so someone could tell how bad it is.

Thanks

Nephew,

Please understand that we are not doctors of any kind so posting a picture wouldn't really help.

I'm a tad confused because of the 2nd opinion MO's chemo suggestion with the word PALLIATIVE in front of it? Palliative means, to my knowledge, not trying to kill the cancer but just trying to treat the pain caused by the cancer.

Posting a photo will not help us to help you over the internet.

If your uncle has seen all kinds of specialists hasnt anyone given him anything for the pain? I suggest you call one of the doctors he has had consults with and ask for pain meds to help him.

The chemo I see mainly used to treat SCC oral cancer here in the US are Erbitux, Cisplatin, Cetuximab and Carboplatin. There are many different types of chemo. Only certain ones have been proven effective against the SCC type of OC. Those are the ones I previously named.

My impression of palliative is that the cancer will be controlled from growing if possible. To me I hear palliative and I think its just to maintain the patient not to cure them, that their cancer is terminal. As you can see both David and I have slightly different ideas about what the physician is attempting for your uncle. We can only give our opinions. Even when we try to help, you still need to find proper medical specialists to treat your uncle. Being in another country things there are much different than how it is here in the US and most members are not familiar with the international differences.

Best wishes!

Hi David & Christine

I appreciate your concerns and prompt responses...
I understand that people on this forum aren't doctors, but, my expectation was to find people who might have undergone treatment with similar drugs, if the drugs helped them and if yes, to what extent?

The patient's family is in a big dilemna, as different doctors are suggesting different chemos with exorbitant prices, and, we are simply handicapped to take a decision, since, we don't know what is better...its not as easy as comparing iPhone and samsung galaxy over the internet...its about trusting a doctor...and, the doctor we have trusted for 4 years is himself negative now...the only thing that has become clear till now that surgery of his face is not on the cards at this moment, and, he should go for targeted therapy...but which one...

If you guys know of any persons who underwent similar treatment, I will be thankful...

Cheers

Your Uncles situation is not an easy one. Your uncle has cancer in multiple places which makes things much more complicated. If the cancer has spread into his lungs then that may be treated a different way than what he had in his mouth. If the cancer has spread past the lungs as you previously suggested, there may not be alot anyone can do to help your uncle.

If surgery is not an option then the only other way to completely eliminate the oral cancer is thru radiation with or without chemo. The chemo's I listed in my previous post are what the majority of oral cancer patients here in the US have been given. If I had to give you a number, I would say 90% of SCC OC patients are given one or a combo of those listed. Then maybe 8% are given something called 5-FU which (I think) is a combo chemo but Im not completely certain about the 5-FU or what chemos its made up from if its a combo chemo. This is for treating the oral cancer only. I dont know what would be given for the lungs or other areas the cancer spread to.

Im very sorry about everything your uncle and family are dealing with! Watching a loved one go thru cancer is a very hard thing for everyone. There are some tough decisions that need to be made. I cant think of anyone on this forum who went thru something similar where their cancer had been on their lip, then cheek, and now back in their mouth but also lungs and other areas too. Time could become a factor in all of this if the cancer is spreading. From what I have learned, in some cases doctors will use chemo (and radiation) to reduce the size of the tumor as surgery would be too involved with taking too much tissue.

Best wishes!

Nephew,

I guess bottom line is are they trying to cure him or keep him alive longer?

1. If they are trying to cure him then surgery would probably be first on the table followed by radiation and chemo. If surgery is ruled out then radiation and chemo would be the choice.

2. If they are trying not to save him but prolong his life then either concurrent radiation/chemo or chemo alone.

3. If neither 1 or 2 is decided upon then he should be made as comfortable as possible until the end.

4. Even if 1 or 2 is selected pain management must be pursued.

Again we are not doctors and while most of us have had some of the chemo's you mention we are not in a position to advise which one or which combination would be best suitable for your Uncle's diagnosis.