Nasopharyngeal cancer

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Nasopharyngeal cancer

by kissncook on Mon Jun 08, 2009 12:00 AM

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I have a b/f who was recently diagnosed with stage IV Nasopharyngeal Cancer. I am trying to learn everything I can to be able to be there for him and help him be comfortable in every way possible. He is currently looking for the best place to get treatment, somewhere that has had some experience in treating this type of cancer, he is open to locate anywhere. So, if anyone has any type of information at all on this cancer, I would love to hear from you. I want to be as informed as possible in all aspects of treatment and care before, during and after! :) God Bless U all! 

RE: Nasopharyngeal cancer

by CAW888 on Thu Jun 11, 2009 12:00 AM

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My husband was diagnosed FEB 2008, with stage IV NP cancer. He is in remission, and he was treated at Beaumont hospital in the metro Detroit area. He had a second opinion from University of Michigan in Ann Arbor and they felt that his disease was so advanced, Beaumont was about a week ahead in preparation for his radiation, and they would do exactly what Beaumont had planned, so they suggested we get going with Beaumont. From my memory of doing some research early on, it seems like there are centers that have dealt more with NP and that was John Hopkins (?) and MD Anderson in Texas. We did not deal with either of those. We were told by more than one doctor that unlike other cancers, the treatment for NP is fairly standard. Cisplatin concurrent with radiation (35 sessions over 7 weeks) followed with Cisplatin and 5FU - three doses over three months. My husband had an ototoxic reaction to the first Cisplatin, so they switched him to carboplatin. There were not many studies in the US to support this, but it was the next best option. Everyone (all 4 of them) that I talked to who had NP, had the same treatment. It is pretty grueling, so we were happy to be within 40 minutes of the hospital because you are driving there everyday for 7 weeks. Some days it was hard to get there and back. If you have questions or would like to talk, you can do a private response and we can e-mail or I can give you my contact info. THis site was also a life saver for me as a caregiver - the people are awesome and knowledgeable. While NP is a little different than some of the throat cancers, parts of the treatment are the same, so there is a wealth of information. Good luck. Catherine

RE: Nasopharyngeal cancer

by pedler130 on Sat Jun 13, 2009 12:00 AM

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Hi kissncook,

I have recently been treated for stage IV Nasopharyngeal carcinoma.  My treatment ended a year ago in April as at this point I am cancer free.  I was treated locally but consulted with the people at the Roswell Park Cancer Institute in Buffalo NY.  The specialize in head neck and throat cancers and see Nasopharyngeal Carcinoma on a regular basis.  Fortunately our local hospital has an association with Roswell Park.  As the other poster mentioned there really is only one defined treatment.  It seems to be pretty effective but it is a rough ride, one of the roughest I am told short of surgery.  I put up a blog about my treatment and the recovery process at www.nasowhat.blogspot.com.  Like most blogs it has the latest posts first but if you check it out you can navigate back to the beginning and read what my treatment was like.

I would be happy to answer any questions I can about my experience with treatment.  Feel free to contact me through this group.

 Good luck.

RE: Nasopharyngeal cancer

by pedler130 on Tue Jun 16, 2009 12:00 AM

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On 6/13/2009 pedler130 wrote:

Hi kissncook,

I have recently been treated for stage IV Nasopharyngeal carcinoma.  My treatment ended a year ago in April as at this point I am cancer free.  I was treated locally but consulted with the people at the Roswell Park Cancer Institute in Buffalo NY.  The specialize in head neck and throat cancers and see Nasopharyngeal Carcinoma on a regular basis.  Fortunately our local hospital has an association with Roswell Park.  As the other poster mentioned there really is only one defined treatment.  It seems to be pretty effective but it is a rough ride, one of the roughest I am told short of surgery.  I put up a blog about my treatment and the recovery process at www.nasowhat.blogspot.com.  Like most blogs it has the latest posts first but if you check it out you can navigate back to the beginning and read what my treatment was like.

I would be happy to answer any questions I can about my experience with treatment.  Feel free to contact me through this group.

 Good luck.


Hi kissncook,

 

I did drive myself to appointments for the first few weeks and then my wife had to drive me.  Most of the time I did take care of myself with regards to meds and feedings but he should have someone look in on him regularly.  Also if he isn't an e-mail kind of guy now is the time to pick it up.  That will become one of his primary forms of communication.

 One thing I did during treatment was keep a log of when I took my meds and did feedings.  There is a side effect called chemo brain which can cause you to forget things.  I used a basic steno pad.  The type that is spiral bound at the top and has a red line down the middle of the pages.  I used a separate page for each day and on one side recorded the times and dosage for the meds and on the other the feedings. 

 It is a rough ride but the treatment plan appears to be effective if you can tolerate it.  The key I found to making it through was my attitude.  A positive attitude doesn't have any effect on how well the treatment works but it can make the ride a bit easier to handle. 

 I wish him the best of luck with his treatment.  Everyone reacts differently to it.

 Tom.

RE: Nasopharyngeal cancer

by philip5malin on Tue Jul 28, 2009 12:00 AM

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I am also stage 4 NPC victims. going through Cis-plain, did not work, now using Erbitux. OK. but my life expectancy is 6 month. I have my experience on www.geocities.com/nasopharyngeal Also other support groups: yahoo group: npccancer yahoo group: nasopharyngeal_carcinoma google group: alt.supports.cancers google group: alt.sci.med.cancers Good Luck to all of you. Hang in there. *************

RE: Nasopharyngeal cancer

by tonylevn on Thu Feb 11, 2016 08:43 PM

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On Jun 11, 2009 12:00 AM CAW888 wrote:

My husband was diagnosed FEB 2008, with stage IV NP cancer. He is in remission, and he was treated at Beaumont hospital in the metro Detroit area. He had a second opinion from University of Michigan in Ann Arbor and they felt that his disease was so advanced, Beaumont was about a week ahead in preparation for his radiation, and they would do exactly what Beaumont had planned, so they suggested we get going with Beaumont. From my memory of doing some research early on, it seems like there are centers that have dealt more with NP and that was John Hopkins (?) and MD Anderson in Texas. We did not deal with either of those. We were told by more than one doctor that unlike other cancers, the treatment for NP is fairly standard. Cisplatin concurrent with radiation (35 sessions over 7 weeks) followed with Cisplatin and 5FU - three doses over three months. My husband had an ototoxic reaction to the first Cisplatin, so they switched him to carboplatin. There were not many studies in the US to support this, but it was the next best option. Everyone (all 4 of them) that I talked to who had NP, had the same treatment. It is pretty grueling, so we were happy to be within 40 minutes of the hospital because you are driving there everyday for 7 weeks. Some days it was hard to get there and back. If you have questions or would like to talk, you can do a private response and we can e-mail or I can give you my contact info. THis site was also a life saver for me as a caregiver - the people are awesome and knowledgeable. While NP is a little different than some of the throat cancers, parts of the treatment are the same, so there is a wealth of information. Good luck. Catherine

Hi Catherin

I know it's been about 6 yrs now. but just wondering how your husband is doing. I am recently diagnosed with NPC and will start treatment soon. Just wondering how your husband is doing and how was the treatment process like. I would like to find out as much as I can so I can be better prepare for whatever is going to come as best as I can. Thank you

RE: Nasopharyngeal cancer

by paularae on Fri Feb 26, 2016 11:06 PM

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I am am six year survivor of NPC. I would goo to Baltimore MD. for treatment. They do salivary gland transfer so you don't end up with dry mouth. I am on another cancer website called Inspire. I can get the phone number there. Life without saliva is not a picnic. If I had known this, I would have gone there. I will post again once I have that phone number.

Paula

RE: Nasopharyngeal cancer

by paularae on Fri Feb 26, 2016 11:13 PM

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 The phone number to GBMC Head and Neck Center is 443-849-8940. This is the only place that does the salivary gland transfer to get out of the radiation rays.

Paula

RE: Nasopharyngeal cancer

by paularae on Fri Mar 04, 2016 11:21 PM

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Please let me know what you decide. My only hope is a gene therapy clinacle trial for one parotid gland. My quality of life is bad. It effects talking, breathing hard, eating, and lack of taste. I used to be an active person. Now if I do anything, I end up with a very soar throat. I would see if your friend is a candiadte for the salivary gland procedure. It will save their quality of life.

Paula

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