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Nasopharyngeal- treatment specifics

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

A big hello to everyone- I just joined this forum minutes ago. A year ago I took the two tumors on the left side of my neck to my regular Dr. By the time the biopsy and Pet Scan was done, and chemo and rad were started, it was early February of 2009: 34 radiation zappings-20 places per session, during which I carried two chemo pumps for four days of week #1 and #4- 6880 mgs of Cisplatin and 125 mgs of Flouracil (sp) for each of those two four-day durations. My mouth was turned into a trainwreck, and week #6 found me in the hospital for four days when a 101-plus fever developed. The initial biopsy Op. sent 5 samples into the University of Iowa from different areas of my mouth and neck. Only the upper-tumor sample came back as positive, and I was told it was Nasopharyngeal.
1) Others of you have this treatment- with chemo pumps?
2) And if so- did your gum tissue taken a major hit, like mine has? And what were you told about your gum tissue recovering? Did you have canker sores?
3) Anybody else told you have/had Nasopharyngeal? If so- how long ago were you treated, and have you had any recurrences? And what were you told about long term hope?
4) Were any of you told the "source", or "point of origin" of your cancer was never found?

jestawoman
Posts: 35
Joined: Oct 2009

I am pretty new here on this board as well. My 42 year old brother is a recurrent nasopharyngeal patient. The treatment and symptoms you describe sound exactly like what my brother went through during his first round of treatments in 2005. Unlike my brother, partly due to being SO sick at the end of radiation, you sound very well educated regarding just what treatments you had. My brother, I think, would have benefited from asking questions such as you do. May not have always gotten answers, but those questions have a way of bringing together the means to process them.
I am replying to your post as a kindred spirit first, and second to tell you that I found a quick way to ferret out nasopharyngeal subjects in this forum by typing the word 'nasopharygeal' into the search box in the upper right of the screen while I was browsing.
I was able to get answers and/or info on most all of my questions and curiousities by simply reading through the search results. Hope this helps you get a jump on your concerns. If not, be ready for some very eloquent and compassionate replys from people that humble me just to read their stories and their advice. When I find a members posts especially interesting, or I want to know more, I click on their name. Many members, including myself, have more about themselves on their member page. You can go to mine and be updated regarding my brothers long journey with NPC.
Stay tough as nails and you CAN beat this.
Peace...Kelly

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Thanks for the reply, Kelly. The "SO sick at the end of radiation," for me, was very key to my forum entry. Radiation was nothing to me- I recovered while getting radiation five days a week. It was the combination of the chemo pumps and radiation that took the toll and put me in the hospital, and I do wonder if others have experienced the same.
And, I thank you for the search suggestion, along with your kind words of caring. God bless you, and your Brother.
KCass

cjamesfu's picture
cjamesfu
Posts: 14
Joined: Sep 2009

During the treatment for NPC, after the first week of combination of chemo and radiation sessions, my body became severe sick ending up staying in the intensive care unit for the following week. My doctor told me it was a reaction to ethyl, which was injected into my body to protect the thyroid during radiation treatment. The doctor terminated the ethyl injection and the treatments resumed smoothly without accidents. I am now in the fourth year of remission. Good luck to you.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

cjamesfu- 4 years! You give me cause for hope, and I thank you for it.
Did you carry the two pumps to get your chemo?
Did they tell you they had found the source/point of origin for your cancer? I do not mean to pry- it's just that my Otolaryngologist has told me that's still something to be concerned about.
Again- 4 years! And thank you.

cjamesfu's picture
cjamesfu
Posts: 14
Joined: Sep 2009

I did not carry a chemo pump, three chemo sessions were done at the clinic, 10 mg cisplantin each. During staging, I took CT, MRI and PET, all showed cancer origin was at nasopharynx. Hope this information would help.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

cjamesfu- yes, I thank you, but I am still confused about my cancer: it was the lab at the University of Iowa that said I have/had NPC, and it's my understanding they could tell this by the cell structure of the one positive biopsy sample, from the upper of my two neck tumors, they got. Is this your experience- that they can identify the specific cancer by the cell structure? My two PetScans have never found cancer, anywhere, other than the first finding it in my two neck tumors. That is what I have been told. My Otolaryngologist has told me how surprised he's been by the PS results, including the first one- which resulted in a second biopsy just before my chemo/rad began: he figured by my stage it would show elsewhere. DID YOUR SCANS ACTUALLY REVEAL CANCER IN A NUMBER OF PLACES IN YOUR NASAL AND PHARYNX AREAS?
My second/last PS was clean, with the possible exception that "something might've shown-up below my tongue." My Oto., however, said he wasn't concerned about it- that the specific area is subject to frequent false-positives. Have you, or anyone, heard of such as this from an Oto./ENT Dr.?
Also of note- by the third week of chemo/rad my two tumor's shrinkage had become very obvious, and by the time the second pump-toting (6880 mgs of cisplatin and 125 of flouracil pumped into me over four days, 24/7) was done the tumors were gone. And still, my Oto. has advised me that the problem is- that they never did find the source/point of origin of my cancer. Did you have neck/lymph tumors? And did they vanish like mine did?
kcass

cjamesfu's picture
cjamesfu
Posts: 14
Joined: Sep 2009

I did not have lymph node when I was diagnosed with NPC. The PET scan also showed indications in my upper chest and abdomen areas. The doctor said they were the wounds where the mediport and G-tube were put in. So the doctor did interpret the indications. I believed what the doctor said.

Dazey
Posts: 86
Joined: Sep 2009

I also have/had the unknown primary - when I questioned both the radiation oncologist and the surgeon I was told that it could still be very microscopic somewhere in the neck area (Waldmeyer ring) or my body might have already eliminated the primary. They said these cells can live a very long time above the shoulders, but the cure rate with radiation is very high. They both emphasized the word cure. The surgeon (from Sloan Kettering) assured me that this is curable, not palliative. Best wishes from another on this journey. Keep posting on your progress! Dazey

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