We were very happy 3 months ago, when my brother was discharged from a cancer hospital with very favorable prognosis. Despite huge weight loss, eating and swallowing difficulty, he dared joined his work back.

But, a couple week ago, we had a major setback. he had terrible headache. they did CT nothing in there so they assumed neuralgia and rxed Lyrica and some other pain meds. a few days after that, he developed left eye ptosis. We consulted a neurophysicain. He ordered MRI.

Findings of the MRI are devastating. it says that they see a lesion on exterior wall of nasopharyngeal wall extending to few more places also edema around optic nerve (likely metastatic). we asked for Biopsy but his current drs are adamant that it is not possible. they have advised 10 days RT. Should we approach other Dr.?

Im very sorry to hear about your brothers possible recurrence.

It is always a good idea to have a second opinion. Recurrences can be fast moving so do not let any time waste before getting this taken care of.

Good luck!!!

Cancer can only be confirmed by biopsy. None of the diagnostic tests are 100% accurate, except FNAB, which is very close. They are probably right, based on CT, MRI, experience, but I would like to get a 2nd opinion, if I could, to proceed further. Why can't they do a biopsy, under anesthesia, on the nasopharyngeal wall? 10 days radiation? Type of radiation? Surgery? Alternative treatment? It takes over 50Grays to kill SCC, certain areas lower due to max toxicity levels, previous radiation, and the optic nerve probably has a lower toxicity level, maybe nasopharyngeal wall also. Sometimes for reiirdation in certain area they do a flap. No chemo planned as a radio sensitizer? This is really the best shot for a cure now to avoid another rcurrence. My last recurrence, my 5th, my consulting RO said 50Gy IMRT would not work, so I left my treatment center, had a different treatment at his institution.

Good luck with everything.

Thank you Christine and Paula for Prompt response.

Is it ok, to do RT without CT in recurrence? I spoke to an Oncologist here, and he said Erbitux for lifetime is your best shot to prevent future recurrence.

thanks

Erbitux can be given long term. I know they give this for palliative care too. and my local onvologist suggested putting me on long term Erbitux, due to my recurrences, but never happened since she was not my treatment doctor. Tarceva, also called Eroltinib, is used as chemo prevention too..Dr Dong Moon Shin, from Emory University, did some studies with this for chemo prevention with Tarceva and a Cox-2 Inhibitor. Are they seeking a cure with treatment.

http://clincancerres.aacrjournals.org/content/early/2013/02/12/1078-0432.CCR-12-3149.abstract

I think your question is can they do radiation without chemo? Yes they can, I did, due to my condition, but chemo can improve radiation by 5-20 or 30 percent, depending on chemo. I forget what Erbitux is. Dr James A Bonner, an expert with Erbitux, also called Cetuximad, did a study or several, if you look him up. If I find, I'll attach.

http://www.docguide.com/adding-erbi...ents-head-and-neck-cancer-presented-asco

I had Erbitux my last recurrence, along with Taxotere. I read a report from MSKCC, adding Cisplatin was disappointing, plus I could not have it due to my kidneys, maybe carboplatin instead said one doctor. The biggest side effect is the rash, can be managed by antibiotics.

Time is always of the essence if you are facing a recurrence but how do you know it's a recurrence if they haven't biopsied? admittedly it if they are going in to biopsy it would make sense that they go in with the intent of taking it all, but they are radiating a sensitive area without confirmation it is a cancer. I am sure they are experienced but that's a tad scary. I wouldn't do anything that would slow the process, but do look into it further to make sure they are experienced at this. Take care and best of luck... you are at a CCC right?

Thank you Cheryl and Paula.

We went to another Cancer hospital today and they opined that surgery or biopsy is not possible because of location of the tumor. MRI findings are: "an intensely enhancing ill-defined lesion involving left lateral wall of nasopharynx with involvement of left parasellar and cavernous region extending to orbital apex through orbital fissure with subtle bony erosion, edematous left optic nerve sheath near apex and adjacent extra-ocular muscle with left retro-orbital fat haziness. in given clinical settings possibility of metastasis appears most likely."

They would start Radiation from Friday. No chemo yet. I am flying back home to be with him. Prayers please.

Hey Cheryl,

Is CCC a hospital? if yes, then we are not at CCC but at HCG cancer hospital in Ahmedabad, India.

Thanks,

[quote=pmb]Is CCC a hospital? [/quote]
CCC is an abbreviation for "comprehensive cancer center," meaning a medical facility where a cancer patient's case is considered from the outset by a team of specialists representing different areas (surgery, chemo, radiation and other specialties depending on the type of cancer) -- taking a "comprehensive" approach to treatment, as opposed to the patient having to find a surgeon, a chemo doc, a radiation doc etc. on his/her own and then hope that they talk to each other.

HCG is a CCC in Ahmedabad - Private institute but has some decent reputation.

All the best for treatment, RT is going to be terrible! Erbitux is an option but it will be an expensive one in India. Rather than RT, Proton Beam Therapy may be more effective in this setting, discuss with oncologist and locate a center (I do not think we have one in India yet) where your brother can have it done.

HI there.. someone else answered for me so that's great. Best of luck with it. I do offer you many prayers. hugs and luck too.

I am sorry to hear this. I hope the docs get on top of it and that your brother gets the treatment he needs. I'll be sending healing thoughts your brother's way. -Michelle

I havent seen any update. Hope things are coming along. Did they ever test for Epstein Barr virus? Which is common caruse of nasopharyngeal cancer.

Thank you all for Prayers.

Treatment seems helping. We are seeing 10% improvement in his headache. I met his Radiologist, he is cautiously optimistic. H said though this is highly unfortunate, they know where it is and it is contained in one place. So if luck favors us, we could expect positive out come. His left eye ptosis has aalleviated a bit too. But no great progress yet.

I plan to see their HOD tomorrow. There are 4 more RTs left, what should we expect after that? My brother is taking TB meds too, it seems he has contracted TB post treatments.

I hope his headache goes away with that lesion and recover very fast. Drs don't give good pain meds here. He is taking diclofenac+ paracetamol for HA and Xanax .5mg 1 tab for sleep. That is not much for his level of pain+ insomnia+ anxiety.
Thank you for Your prayers and help.

Since there are only 4 more rad treatments left that would explain why there are so many issues happening right now. The next 3 weeks will be very difficult. Rads are cumulative and they build up even after the treatments have ended.

The one thing that can be controlled is good nutrition and hydration. By taking in every single day (for at least the next year) a minimum of 2500 calories and 48 oz of water it will help him to get thru this and to recover. I would ask about getting hydrated in the chemo lab, it will make a huge difference!

Take some time to read thru posts and you will find all the answers to your "whats next" questions. Things like thick ropey mucous will hang around for a couple weeks to be replaced by dry mouth. At this point you probably dont want to get too far ahead of yourself with whats happening next. Focus on what is happening right now and push that nutrition, fluids and pain meds.

Ive never even heard of those pain meds. No wonder he is feeling awful!!! At that point when I was going thru tx I was on 150 mg fentanyl patches. Sometimes the caregiver needs to put on their "nurse hat from heck" and be a squeaky wheel until they get some action. Nobody should be in pain like that!!!! There have been studies done showing how detrimental it is to the patient to be hurting. They will do so much better when they arent in pain. If you need me to find the study and post it for you to print out I will, just say the word. Tell those doctors that they MUST do something to help him handle the pain. It really is inhumane for his doctors to allow him to suffer. This really ticks me off when I hear of an OC patient suffering in pain when those doctors have no clue how bad it can be and they have the capability to change that but they dont. GGGRRRRR!!!! Speak up and tell them he needs the fentanyl patch and he should be starting out with a 50 mg and if that doesnt work they need to move it up to 100mg. It takes 24 hours to kick in so if you get some action tomorrow he could be feeling better on Tuesday. Do not take NO for an answer.

Good luck!!!!!

Oh PMB you poor thing!

Ask for a referral to a pain management team/specialist - diclofenac and paracetamol are not even close to good enough! For the US readers this is Voltaren and Tylenol.

The treatment for TB interacts with a lot of other medications and it sounds a lot like your doctor is not confident enough to prescribe serious pain killers when your brother is also on TB medication. I agree with Christine, now is the time to make a fuss. Your brother should not be allowed to go through this on the most basic of pain medications and you need impress upon the doctor that current medications are not adequate. And don't let your brother underplay the pain he is in. Try and get him to agree that on this occasion, when he gets in front of the doctor, he should not be "brave". I remember after a hour of discussion at home with my Alex, we agreed that his pain was severe enough to warrant a request to escalate his pain medication to the next level. When the doctor asked how he was managing he replied that he could handle it... aarrggghhh!

I have come to the conclusion that this is something that men do, for no reason that I understand other than pain tolerance appears to be attached to sense of worth somehow

Is it possible your brother thinks that to admit to pain is a sign of weakness or failure? If so, maybe it would help if you reassure him that others in his position need something opiate based to even touch the pain. Some possible options to ask the doctor about are fentanyl, oxycodone, or morphine to see if any of these are available ?

They have agreed to add Tramadol 100 mg BID. They want to reserve Morphine for later stages.

I was devastated when his rad oncologist told me that prognosis is not very good for such type of early recurrence. They are not giving any Chemo right now, at the end of the treatment they may refer us to an Oncologist. He is loosing vision in his left eye too. Everything from his left eye seems so hazy. So he may loose his left eye. He is already struggling with left eye ptosis and severe headache on left side.