My wifes Stage IV Nasopharyngeal Cancer
Comments
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Not much help...
Stage 4 Oropharyngeal here, rather than nasopharyngeal, but I see Dr. Michael Kaplan at Stanford (Chief, Head/Neck Surgical Oncology), and he has been wonderful! Obviously, I trust him with my life. I'm 15 months out from end of concurrent chemoradiation with cisplatin chemo, and so far all is well. Best wishes for a good outcome for your wife. It meant so very much to me to have my husband by my side the entire time.
Deb0 -
That is so much helpD Lewis said:Not much help...
Stage 4 Oropharyngeal here, rather than nasopharyngeal, but I see Dr. Michael Kaplan at Stanford (Chief, Head/Neck Surgical Oncology), and he has been wonderful! Obviously, I trust him with my life. I'm 15 months out from end of concurrent chemoradiation with cisplatin chemo, and so far all is well. Best wishes for a good outcome for your wife. It meant so very much to me to have my husband by my side the entire time.
Deb
Just hearing someone that went though the process is a great hope for me and my wife. Thank you for your response. She's on the 3 tier cocktail chemo, then the Rad therapy. Thank you again for your response. I can breathe a little easier and get some sleep now. Thank you.0 -
Hi Robert
Sorry to hear this but don’t give up, you will find a lot of us here with NPC like your wife and we are all still living and doing well. Let your wife know there is nothing to be afraid of with the scope it is just a normal procedure we have to do every time we see the ENT. You and your wife are in for a ruff ride but we will be here to help you both through to you reach the finish line.
PS: Welcome to the family
Hondo0 -
Thank you allHondo said:Hi Robert
Sorry to hear this but don’t give up, you will find a lot of us here with NPC like your wife and we are all still living and doing well. Let your wife know there is nothing to be afraid of with the scope it is just a normal procedure we have to do every time we see the ENT. You and your wife are in for a ruff ride but we will be here to help you both through to you reach the finish line.
PS: Welcome to the family
Hondo
Thank you all for your words of encouragement. I just wish they had something for her mouth to stop it from being raw. saline rinse isn't enough. My wife is tiny but she really wants to eat by mouth. Never thought that comming from southern china would lead to something like this. We find strength from within, not from without.0 -
Robert, NPC is morerobertjuy said:Thank you all
Thank you all for your words of encouragement. I just wish they had something for her mouth to stop it from being raw. saline rinse isn't enough. My wife is tiny but she really wants to eat by mouth. Never thought that comming from southern china would lead to something like this. We find strength from within, not from without.
Robert, NPC is more common in your area of the world. I wasn't a nasopharyngeal cancer survivor (NPC), I was a squamous cell carcinoma stage four survivor.
Some things that may help your wife with mouth sores and a raw mouth and throat, are 'magic swizzle' or sometimes also called 'magic mouthwash'. It's a few different medications mixed, like liquid lidocaine, benedryl, and maalox, and you swish and swallow, and it numbs your mouth. Also swish and swallow with L-glutamine also helps with mouth sores. It's a powder, and you put a heaping teaspoon in a glass of water and swish and swallow. You can order it on line or here, it's often found in vitamin shops.
GLUTAMINE
ARTICLE ON BENEFITS OF GLUTAMINE
ABOUT MAGIC MOUTH WASH or MAGIC SWIZZLE FOR MOUTH PAIN
GLUTAMINE
ARTICLE ABOUT GLUTAMINE AND THE PREVENTION OF MUCOUSITIS IN BMT PATIENTS
There is also a superthread of links that could be helpful to you:
HNC SUPERTHREAD0 -
The word Stage 4sweetblood22 said:Robert, NPC is more
Robert, NPC is more common in your area of the world. I wasn't a nasopharyngeal cancer survivor (NPC), I was a squamous cell carcinoma stage four survivor.
Some things that may help your wife with mouth sores and a raw mouth and throat, are 'magic swizzle' or sometimes also called 'magic mouthwash'. It's a few different medications mixed, like liquid lidocaine, benedryl, and maalox, and you swish and swallow, and it numbs your mouth. Also swish and swallow with L-glutamine also helps with mouth sores. It's a powder, and you put a heaping teaspoon in a glass of water and swish and swallow. You can order it on line or here, it's often found in vitamin shops.
GLUTAMINE
ARTICLE ON BENEFITS OF GLUTAMINE
ABOUT MAGIC MOUTH WASH or MAGIC SWIZZLE FOR MOUTH PAIN
GLUTAMINE
ARTICLE ABOUT GLUTAMINE AND THE PREVENTION OF MUCOUSITIS IN BMT PATIENTS
There is also a superthread of links that could be helpful to you:
HNC SUPERTHREAD
The word is bad enough to hear, any comparison to just the word cancer gives me great direction. But we fight the good fight because we have the will to live and survive. I will look into everything you have written about magic swizzle. She wants to continue to feed herself. I'm getting the house ready cleaned and getting rid of all the smells now for her arrival after round 1 chemo.0 -
Stage 4 tonsil
Hi Robert,
I'm sorry that you/your wife have to go through this but very glad you found your way to this website. It's a great place for support and lots of information/resources (as you can tell).
My partner Mike is 14 months post treatment for Stage IV tonsil cancer and all PET scans to date have been clean.
You are so right...peace love faith and hope powers us all. Thoughts and prayers with you both as you go through this journey!
Chris/Mike0 -
about stage 4+ Nasopharyngeal Cancer
I was only 24 and only been married for 6months when I found out I had stage 4+ Nasopharyngeal Cancer back in 2010 and started out with a sore throat then it moved to a ear infection. I dealt with the ear infection from christmas of 2009 to feburary of 2010 and I went to see the doctor 2 times and they gave me all antibiotics and the ear infection didnt improve so I went to the ER on the 3rd time and told the ER doctor that my right ear still hurts and she looked in there and she said there was still a ear infection so she stepped out for 10mins and after waiting 20mins she came back in and she said she ordered a MRI. So when got the MRI done and went back to the waiting room and the ER doctor came back in about 25mins and she said there was 2 masts that they cant determined what the mastes was. So she told me to contact a ENT doctor about the ear infection so I went and seen a ENT doctor and he was able to put a tube in my ear and he also felt a lump in my neck. So he ordered a biopsy and week later I had surgery to remove the lymph node and after the surgery was done waited about a week and went back to ENT doctor and he told me, my wife and my mom I had Nasopharyngeal Cancer. So after meeting with the ENT doctor he setup a apt with the chemo and radiation doctor. So I started Chemo on March of 2010 and was done with chemo by june 30th then I started radiation for 7 weeks 5 days M-F 20mins in july and I was done with radiation in last week of August of 2010.
Then couple months later I had PET scan in nov and after that PET scan last nov I been cancer free so far.
But here is the very late side effects I am dealing with right now:
TMJD
dry mouth
neck and shoulder problems
hearing problems in both ears due to chemo/radiation
lung problems now with hacking up green thick green mucus and blood with it.
Which next month I am seeing the lung doctor (for the first time) and the ent doctor again. Then in oct I get my yearly PET scan then I see my chemo/radiation doctor.
I do see my ENT doctor every 2 months for first year post treatments.0 -
I had stage 4A NPC,
I had stage 4A NPC, diagnosed Jan, 2010. Finished 2 chemo rounds and 35 rads with weekly chemo, May, 2010. Have had clean scans since.
The radiation was rough and I had a bad reaction to the chemo and ended up in the hospital for a week with pulmonary embolisms. Took about 1 and 1/2 months after the rads before I felt well enough to go back to work. I'm still struggling with the standard radiation side effects, dry mouth and diminished taste. Other than that, I'm feeling really well and am mostly back to a normal life.
I am sending your wife all the good vibes and thoughts I've got.0 -
Robertmeinken said:I had stage 4A NPC,
I had stage 4A NPC, diagnosed Jan, 2010. Finished 2 chemo rounds and 35 rads with weekly chemo, May, 2010. Have had clean scans since.
The radiation was rough and I had a bad reaction to the chemo and ended up in the hospital for a week with pulmonary embolisms. Took about 1 and 1/2 months after the rads before I felt well enough to go back to work. I'm still struggling with the standard radiation side effects, dry mouth and diminished taste. Other than that, I'm feeling really well and am mostly back to a normal life.
I am sending your wife all the good vibes and thoughts I've got.
I was stage-3 NPC back in late 08. Last rad was in April of 09, and have gotten back only good PET results. Excellent success rate with our C, but it does take a toll. I, too, had to spend 4 nights in a hospital shortly after the second cisplatin/FU-5 session, but turned the corner those last 24-hours.
If you scan the posts on this forum you can learn the basics, like the critical importance of hydration and Nutrition, along with the meds used to help on thru it- like Magic Mouthwash, etc. Sweet's Superthread is a great thread to explore.
One little tidbit I learned the hard way- is your wife on Flouride trays? The teeth take a major hit with the NPC rads, as does the entire mouth. The gums can (slowly) heal, but the teeth don't. I watched the tops on all my teeth disappear into flat-tops with exposed innards, then finally went to the University of Iowa's hospital Dental Specialist. He told me Flouride Trays have been the standard with all H&N patients for the past 30-years, and they start the trays even before tx starts, then during, and then continues for life. The U of Iowa is ranked #4 in the US for Otolaryngology, I might add. If she has her teeth- then she should be on the Flouride trays.
We are all Survivors, here, Robert. As we have all survived this H&N thing, so will your wife. That single fact was enough for me to keep it in the Positive thru all treatment, and every one of us knows the importance of keeping it in the Positive. Keep us informed on how it's going- and do not hesitate to ask any questions that arise, or express your concerns.
Believe
kcass0 -
Hi Timtimreichhart said:about stage 4+ Nasopharyngeal Cancer
I was only 24 and only been married for 6months when I found out I had stage 4+ Nasopharyngeal Cancer back in 2010 and started out with a sore throat then it moved to a ear infection. I dealt with the ear infection from christmas of 2009 to feburary of 2010 and I went to see the doctor 2 times and they gave me all antibiotics and the ear infection didnt improve so I went to the ER on the 3rd time and told the ER doctor that my right ear still hurts and she looked in there and she said there was still a ear infection so she stepped out for 10mins and after waiting 20mins she came back in and she said she ordered a MRI. So when got the MRI done and went back to the waiting room and the ER doctor came back in about 25mins and she said there was 2 masts that they cant determined what the mastes was. So she told me to contact a ENT doctor about the ear infection so I went and seen a ENT doctor and he was able to put a tube in my ear and he also felt a lump in my neck. So he ordered a biopsy and week later I had surgery to remove the lymph node and after the surgery was done waited about a week and went back to ENT doctor and he told me, my wife and my mom I had Nasopharyngeal Cancer. So after meeting with the ENT doctor he setup a apt with the chemo and radiation doctor. So I started Chemo on March of 2010 and was done with chemo by june 30th then I started radiation for 7 weeks 5 days M-F 20mins in july and I was done with radiation in last week of August of 2010.
Then couple months later I had PET scan in nov and after that PET scan last nov I been cancer free so far.
But here is the very late side effects I am dealing with right now:
TMJD
dry mouth
neck and shoulder problems
hearing problems in both ears due to chemo/radiation
lung problems now with hacking up green thick green mucus and blood with it.
Which next month I am seeing the lung doctor (for the first time) and the ent doctor again. Then in oct I get my yearly PET scan then I see my chemo/radiation doctor.
I do see my ENT doctor every 2 months for first year post treatments.
I am with you my friend; I too am starting to have problems with the lungs not sure why they have been good for quite a number of years. A few months ago I notice blood in my mouth so I went to see my ENT she could not see any problems so I just went on about mu business. Now a few weeks ago I notice in the morning I have very think mucus in my lungs and when I hack it up there is some blood in it. I go for PET next month on the 8th & 9th so will see what it showed then.
Let me know how you do with your lungs doctor visit if you don’t mind.
Wishing you the best
Hondo0 -
Thank you again everyoneKent Cass said:Robert
I was stage-3 NPC back in late 08. Last rad was in April of 09, and have gotten back only good PET results. Excellent success rate with our C, but it does take a toll. I, too, had to spend 4 nights in a hospital shortly after the second cisplatin/FU-5 session, but turned the corner those last 24-hours.
If you scan the posts on this forum you can learn the basics, like the critical importance of hydration and Nutrition, along with the meds used to help on thru it- like Magic Mouthwash, etc. Sweet's Superthread is a great thread to explore.
One little tidbit I learned the hard way- is your wife on Flouride trays? The teeth take a major hit with the NPC rads, as does the entire mouth. The gums can (slowly) heal, but the teeth don't. I watched the tops on all my teeth disappear into flat-tops with exposed innards, then finally went to the University of Iowa's hospital Dental Specialist. He told me Flouride Trays have been the standard with all H&N patients for the past 30-years, and they start the trays even before tx starts, then during, and then continues for life. The U of Iowa is ranked #4 in the US for Otolaryngology, I might add. If she has her teeth- then she should be on the Flouride trays.
We are all Survivors, here, Robert. As we have all survived this H&N thing, so will your wife. That single fact was enough for me to keep it in the Positive thru all treatment, and every one of us knows the importance of keeping it in the Positive. Keep us informed on how it's going- and do not hesitate to ask any questions that arise, or express your concerns.
Believe
kcass
I am in disbelief over the number of responses in the last 48 hours. My wife feels better just to get the iv out of her pic line. She'll be home today after our first round of treatments. White blood cell Shot tomorrow, Then back again for round two. We will keep it extra positive and have developed a newer outlook on life. That and getting rid of refined sugars. Thank you for lending us your strength. She can't believe all the posts. We'll be reading them over tonight.
Prepare for the worse, Pray for the best.
Robert and Annie0 -
NPC 4
Hi Robert,
I was diagnosed with stage 4 NPC with mets to the spine and sternum in May of 2010. My last day of treatment was December 28 2010. I'm doing well now with a clean MRI under my belt and a fairly clean PET (1 spot on my pelvis that most likely is inflammation from a mtn. bike ride 2 days before the scan). I got my treatment at the Marin Cancer Institute as Dr. Pinto at Stanford told me the cancer was uncurable and that I would die within 3 years. My doc in Marin has always held the belief that it's curable and that we've got it beat. Stanford is a great place to get treatment though. Dr. Pinto is just an ****. You guys can definitely kick cancers ****. Make nutrition and exercise a priority and ask as many questions as you need to here and of your docs. Let us know how it's going. Stay strong.
AB0 -
Mouth painrobertjuy said:Thank you all
Thank you all for your words of encouragement. I just wish they had something for her mouth to stop it from being raw. saline rinse isn't enough. My wife is tiny but she really wants to eat by mouth. Never thought that comming from southern china would lead to something like this. We find strength from within, not from without.
My ENT prescribed lidocaine in a viscous solution and I used it on a q-tip or wet foam "sucker". Tasted terrible, but killed the pain before attempting to sleep for the night. Best wishes and luck to both of you.0 -
Stage 4 pharyngeal
My husband had stage 4 pharyngeal cancer . He found lumpes in his neck in August 2006. Dr sent him for MRI and they found tumor . He had chemo 5 round and then 5 weeks of radiation . That was 5 years ago this week . That we found out . He is cancer free. Good luck and God bless you both !!
Valerie0 -
Last nightvsudd said:Stage 4 pharyngeal
My husband had stage 4 pharyngeal cancer . He found lumpes in his neck in August 2006. Dr sent him for MRI and they found tumor . He had chemo 5 round and then 5 weeks of radiation . That was 5 years ago this week . That we found out . He is cancer free. Good luck and God bless you both !!
Valerie
My wife and I got to spend the night together at home. She's home but silence is suffering. I've setup our radio so she has some sound. Her friend will be over soon to take her out to the doctors for the white blood cell shot. Every day is new and we're appreciating life more now then ever. Thank you for sharing your stories. It gives us great hope. love to you all. Annie, Robert and Xavier.0 -
About the lung doctorHondo said:Hi Tim
I am with you my friend; I too am starting to have problems with the lungs not sure why they have been good for quite a number of years. A few months ago I notice blood in my mouth so I went to see my ENT she could not see any problems so I just went on about mu business. Now a few weeks ago I notice in the morning I have very think mucus in my lungs and when I hack it up there is some blood in it. I go for PET next month on the 8th & 9th so will see what it showed then.
Let me know how you do with your lungs doctor visit if you don’t mind.
Wishing you the best
Hondo
Hondo
I will keep you updated on the visit with the lung doctor what happens or what me and my wife finds out.
I am shocked that your ENT doctor didnt order a Bronchoscopy with all the heavy mucus. I have been dealing with this ever since last nov. But I will keep everybody updated on this test.
I dont want to sound sick by doing this but when I hacked up my heavy green or what ever color mucus with blood in it I would take a picture of it with my ipod and when I see my ENT doctor I would show him it and every time he sees it he doesnt like it and he always is telling there could be some serious damage done from the treatments.0
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