Seeking support from Nasopharynx Cancer Survivors

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Seeking support from Nasopharynx Cancer Survivors

by Faithnofear on Mon Dec 21, 2015 01:32 AM

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Hi All - I'm 34 yo and was diagnosed with stage 4 Nasopharynx Carcinoma on 10/23/15. I have had 21/33 radiations and 5/7 chemo (cisplatin). Last radiation is scheduled for 1/7/16!! Wahoo! My doctor recommends that I get a second round of chemo. He says: given stage IV disease, the chance of cure is about 60%. I recommend 2nd phase of treatment (chemo alone with Cisplatin and 5FU) to maximize the chance of cure. This 2nd phase will start about 4-6 weeks after radiation ends. Cisplatin will be given as a bolus. 5FU chemo will be given as a continuous infusion given via a portacath over 4 days. This chemo combination will be given once every 4 weeks for 3 cycles. So far I have been tolerating both radiation and chemo pretty well. I have lost about 12 lbs (no PEG tube), but am able to eat and drink. Anyone out there have had to do a 2nd round of chemo? My doc says my type of cancer responds well to treatment, but I'm afraid it might come back. Anyone else had cancer recur? Thanks, Faith No Fear

RE: Seeking support from Nasopharynx Cancer Survivors

by Qoemarie on Mon Jan 04, 2016 06:30 PM

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Hello...regret that you have had this happen, but we have a type of cancer that responds well to treatment. I was dx on Jan. 29, 2015. On march 1st I started 37 radiation treatments and 6 cisplatin treatments, with 3 during radiation and 3 after. In the last three they inclused 5FU. I was 59 at time of dx and treatment. I have a PEG tube ( coming out later this month) but still lost quite a bit of weight. Having extra pounds has not really made this an issue. About six weeks ago signs of neuropathy started in my left arm and hand. I am taking gabapentin for this. The holidays postponed neurology visit until the 13th of this month, hoping to find out more then. Fatigue has been my biggest issue, but have been told repeatedly by my treatment team that this is typical. Early on, I was worried about recurrance, but the faith I have in my treatment team has about erased those thoughts. I wish you all the best as you finish radiation and await the second rounds of chemo. If I learn more about the process or expectations, I will be sure to post.

RE: Seeking support from Nasopharynx Cancer Survivors

by Arman on Mon Jan 04, 2016 10:02 PM

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On Dec 21, 2015 1:32 AM Faithnofear wrote:

Hi All - I'm 34 yo and was diagnosed with stage 4 Nasopharynx Carcinoma on 10/23/15. I have had 21/33 radiations and 5/7 chemo (cisplatin). Last radiation is scheduled for 1/7/16!! Wahoo! My doctor recommends that I get a second round of chemo. He says: given stage IV disease, the chance of cure is about 60%. I recommend 2nd phase of treatment (chemo alone with Cisplatin and 5FU) to maximize the chance of cure. This 2nd phase will start about 4-6 weeks after radiation ends. Cisplatin will be given as a bolus. 5FU chemo will be given as a continuous infusion given via a portacath over 4 days. This chemo combination will be given once every 4 weeks for 3 cycles. So far I have been tolerating both radiation and chemo pretty well. I have lost about 12 lbs (no PEG tube), but am able to eat and drink. Anyone out there have had to do a 2nd round of chemo? My doc says my type of cancer responds well to treatment, but I'm afraid it might come back. Anyone else had cancer recur? Thanks, Faith No Fear

is your cancer positive for the HPV virus?

I was diagnosed Aug 2014 with stage 3 Tonsil cancer with one lymph node involvement. I consulted with 4 different Drs " 2 oncologists and two head and neck surgeons" and 3 of them recommended radiation alone and one oncologist recommended both radiation and chemo. I opted for radiation alone and got a clear petscan 9 months later September 2015. There are many cancer survivors on this site with stage 4a cancer who got both radiation and chemo but no one needed 2nd round of chemo unless they had a recurrence. I have been told for stage 3 or 4a tonsil cancer positive for the HPV virus, the cure rate is 90% or better. I have noticed that on this site, the recurrence rate is no more than 10% for the unlucky patients.

Good luck, I will be praying for you

Arman

 

RE: Seeking support from Nasopharynx Cancer Survivors

by paularae on Thu Jan 07, 2016 02:15 AM

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I am a six year survivor of nasopharygeal carcinoma. I had 3 cisplatin chemos three weeks apart and then 39 radiation treatment. I would get chemo on the Monday of each week of radiation. I had to have the peg tub, but was able to get it out a few months after treatment. I suffer from severe dry mouth. This is my worst side effect. I also have TMJ problems. I continue to have dental checkups and dental work. I am to be part of a clinicle trial for gene therapy for one parotid salivary gland. This is to be this February or March. If you have any question please ask.

Paula

RE: Seeking support from Nasopharynx Cancer Survivors

by Meowdle on Sat Jun 25, 2016 12:14 AM

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My mother was recently diagnosed with nasopharyngeal carcinoma. She will probably have to get radiation plus chemo soon. How did your gene therapy clinical trial turn out? Was there any improvement in saliva function?

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