Nasopharyngeal carcinoma
I am a 39 year old mom of 2 and a step mom of 2. I have just been diagnosed with stage 3 nasopharyngeal carcinoma. I had my peg tube put in this past Thursday and am still struggling with the idea of having to need to use it sooner than later. I begin my chemotherapy and radiation treatments on the 21st. I am still in disbelief and shock that this is all happening to me and all so fast. I am otherwise a very healthy person and I know I want let this beat me. Any advice with what to expect or how to handle with my first few weeks of treatment would be hugely appreciated.
Thank you and God bless.
Catherine
Comments
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Catherine
Number of us were/am afflicted with NPC. Had my PEG for a little over 15-months, also, so I can relate to where you are, now.
Did you Onco/ENT Drs say they found the Primary source/tumor of your C? If not, then you are unknown Primary. Have your Dr's told you which is the case for you? Might make a difference in your rad treatment.
Catherine, I was also stage-3, as my two tumors were less than 2 1/2-inches in size. My treatment shrunk them into obllivion, and my last rad was over 26-months ago. You are gonna survive this thing, and find life is great on the other side of treatment. I returned to work a month after my last rad. It is no walk in the park, Catherine, because it is H&N C. Important thing is to keep your Drs in the Loop with how you're handling it all, as it's their job to make sure it goes well for you. And it will. The one certainty is that you will survive this C thing, as many of us bear testimony to. Hold onto that Positive fact, and keep that constantly in mind-
Believe
kcass0 -
Welcome
Hi Catherine,
So sorry to read that you have NPC and yet grateful that you found our little board. I had NPC and I am also 39, was 38 when diagnosed. I was stage 4 with distant mets to bone but have finished treatment and I'm doing well.
Advice is just this: ask a lot of questions and don't ignore anything going on in your body. Let your docs know everything and run it by us here also. Sometimes this board has an answer that the docs don't. Since you have a week before treatment starts I'd say enjoy it as much as you can. Go see a baseball game and eat something you really like (the Giants are doing really good and the garlic fries rule). Get your nutrition plan in place now with tube feedings and such. A little reading might be helpful; I recommend "Life over Cancer", "The China Study", "Anti-Cancer" and "Beating Cancer with Nutrition".
There's a post on this board about H&N Kits that I sent out where everyone said what they thought would be useful products for new H&N people. It might be on the superthread. Definitely check out the superthread.
Take it as it comes. It's different for everyone. Surround yourself with friends and loved ones. Pray without cease. Believe that you're gonna be cancer free soon. Know that you're not alone.
Let us know how we can help. Someone is always here.
Bob0 -
Hi Catherineadventurebob said:Welcome
Hi Catherine,
So sorry to read that you have NPC and yet grateful that you found our little board. I had NPC and I am also 39, was 38 when diagnosed. I was stage 4 with distant mets to bone but have finished treatment and I'm doing well.
Advice is just this: ask a lot of questions and don't ignore anything going on in your body. Let your docs know everything and run it by us here also. Sometimes this board has an answer that the docs don't. Since you have a week before treatment starts I'd say enjoy it as much as you can. Go see a baseball game and eat something you really like (the Giants are doing really good and the garlic fries rule). Get your nutrition plan in place now with tube feedings and such. A little reading might be helpful; I recommend "Life over Cancer", "The China Study", "Anti-Cancer" and "Beating Cancer with Nutrition".
There's a post on this board about H&N Kits that I sent out where everyone said what they thought would be useful products for new H&N people. It might be on the superthread. Definitely check out the superthread.
Take it as it comes. It's different for everyone. Surround yourself with friends and loved ones. Pray without cease. Believe that you're gonna be cancer free soon. Know that you're not alone.
Let us know how we can help. Someone is always here.
Bob
I hat to say Welcome, but this site will prove to help you in many ways in the coming months, support, guidance and we will just let you **** if you like. The forum is yours to ask, and do with as you see fit.
I also had a PEG tube for 13 months and used it daily. I lost about 10% of my weight which is pretty good I've found out. I had Base of tongue cancer with lymph nodes on one side affected. I had 36 rads and 6 chemo treatments. I am now 15 months post treatment and have no evidence of disease any more. The treatment works, I can verify that. But, I suggest you get a very good support system, a caregiver is a necessity during the late rads for sure, at least for me. The treatent is tough but it works. We are all here to tell you it works and you have to be very patient in the healing process. I suggest you get some good books, movies and help with your kids (don't know their ages). You will be tired a lot and all side effects are individual for sure. As you progress through the treatment, we're here to give you advice. I had some side effects that other did not and vice versa. But we all have many things in common, they just hit us at different times. You'll know what to ask and then we'll give you advice. Right now, go out and eat a wonderful dinner and drink a fine glass of wine prior to your treatment. Get your hair and nails done. Get feeling good about yourself now and then set your eyes on the prize, coming out of this free of disease.
I wish you all the best in your treatment and please come back and let us know how your are doing. We are here to listen and of course to help you get through this....
All the best, Steve0 -
H&N Kitsadventurebob said:Welcome
Hi Catherine,
So sorry to read that you have NPC and yet grateful that you found our little board. I had NPC and I am also 39, was 38 when diagnosed. I was stage 4 with distant mets to bone but have finished treatment and I'm doing well.
Advice is just this: ask a lot of questions and don't ignore anything going on in your body. Let your docs know everything and run it by us here also. Sometimes this board has an answer that the docs don't. Since you have a week before treatment starts I'd say enjoy it as much as you can. Go see a baseball game and eat something you really like (the Giants are doing really good and the garlic fries rule). Get your nutrition plan in place now with tube feedings and such. A little reading might be helpful; I recommend "Life over Cancer", "The China Study", "Anti-Cancer" and "Beating Cancer with Nutrition".
There's a post on this board about H&N Kits that I sent out where everyone said what they thought would be useful products for new H&N people. It might be on the superthread. Definitely check out the superthread.
Take it as it comes. It's different for everyone. Surround yourself with friends and loved ones. Pray without cease. Believe that you're gonna be cancer free soon. Know that you're not alone.
Let us know how we can help. Someone is always here.
Bob
Bob, I don't think I did add that thread. I will check it out, and if i didn't add it, i will next time i bump it up.0 -
Hi CatherineKent Cass said:Catherine
Number of us were/am afflicted with NPC. Had my PEG for a little over 15-months, also, so I can relate to where you are, now.
Did you Onco/ENT Drs say they found the Primary source/tumor of your C? If not, then you are unknown Primary. Have your Dr's told you which is the case for you? Might make a difference in your rad treatment.
Catherine, I was also stage-3, as my two tumors were less than 2 1/2-inches in size. My treatment shrunk them into obllivion, and my last rad was over 26-months ago. You are gonna survive this thing, and find life is great on the other side of treatment. I returned to work a month after my last rad. It is no walk in the park, Catherine, because it is H&N C. Important thing is to keep your Drs in the Loop with how you're handling it all, as it's their job to make sure it goes well for you. And it will. The one certainty is that you will survive this C thing, as many of us bear testimony to. Hold onto that Positive fact, and keep that constantly in mind-
Believe
kcass
Like Kent said there are a number of us here who are NPC Nasopharyngeal Carcinoma. We were all treated and are still alive to help others who are just going through this fight in there lives. It is not easy but you can do it, you will need the help and support of your family and friends. Also get people praying for you; to me there is nothing more importance then pray and the more the better.
Also welcome to our family here on CSN we are so glad to have you just wish it was not for C.
Hondo0 -
Welcome Catherine
So sorry to hear you are about to partake in this journey. But you have found an awesome site with great people and tons of experience to help you through the journey.
If you haven't, scan though the SuperThread that sweetblood22 (Dawn) has built...huge amount of information...
SuperThread
Thoughts and Prayers,
John0 -
Good luck
Try and relax as much as possible. Also make a list of all the questions that you would like to ask the doctors. I know sometimes i would forget a question or two. Try and stay hydrated as much as possible. That was my biggest problem. I had to have ivs every other day. Another thing to ask about is Magic Mouthwash that seemed to help some. Thats all i can think about. Good luck and God bless. David0 -
About NCPsweetblood22 said:H&N Kits
Bob, I don't think I did add that thread. I will check it out, and if i didn't add it, i will next time i bump it up.
Hi Catherine
I am sorry to hear you was diagnosed with NPC. I was diagnosed last year (march 2010) at age 24 with NPC stage 4 I do believe if I can remember from the results on paper said. I was only been married less then a year when I found out I had this nasty NPC cancer. But I can tell you the doctors still dont know how I got it. My Cancer did spread to one side of the lymph node on the right side and I had surgery to remove it then I went through 3 treatments with Cisplatin and 3 treatments of 5FU at the same time for 3 months then in August I went for 7 weeks with 5 days straight with Radiation with IMRT and with mask. I never did have PEG tube put in but I was told if I didnt start to eat my chemo doctor was going to get it placed so after I meet with him I forced myself to start eating again to gain weight because during that 7 weeks of radiation I didnt eat at all I went from 205 down to 130LBS in 7 weeks. As everybody said like tim aka hondo,kent cass,sweetblood22 PEG tube saved them.
Also food is going to your main medication that is the major thing I want to point out make sure you eat everyday. Also drink alots and alots of water.
Which I wanna thank tim aka hondo,kent cass,sweetblood22 for helping me during this nasty time.
here is a good pointer if you lose your saliva after post treatments drink water everytime you take a bite before you swallow because your throat will be raw after radiation treatment reason why I am saying this because your food will get stuck I learned out the hard way because my food would get stuck and feels like your going to choking to death. Plus by drinking water with your food will help the swallowing part go down alot better. I learn that trick from tim aka hondo,kent cass,sweetblood22. Yes I still take take a slip of water everytime I take a bite to eat and before I swallow because I am still having swallowing problems nearly year post treatment.
Here is some late things you might get after all treatments are done:
TMJD
loss of saliva but will come back about 12-18 months post treatments.
neck and shoulder problems
sleeping problems
swallowing problems
hacking up small traces of blood
heavy green dried up mucus
hearing loss/problems
these things ^ I just said that is what I am dealing with right now after nearly year post treatments.
if there is anything else we can help let us know we are here to help you get through this nasty NPC.0 -
WELCOME TO THE GROUP
I am not an NPC patient, but have survived Stage 4 Tonsil CA with Mets to 19 Lymph Nodes in my neck.
The others have done a great job outlining what potential side effects you may have, ETC. Just remember that keeping a positive mental attitude during treatment and post treatment will go a long way.
Know that you can ask of us anything, and someone here will be able to supply some advice and or usefull information.
I am just 8 months post treatment, and my scans from Monday all came back clean.
This can be done, but it will be the hardest thing you most likely will ever encounter.
Stay strong.
Best!!
Mike0 -
THANK YOU!
Thank you all! Its incredible how much better I feel after reaching out. I don't feel so alone anymore. Here is a bit more info on my case. They have found the primary source right in the center of my nasopharynx and also a mass to the left. Also there are a few lymph nodes in the left side and center of my neck that have tumors. No surgery for me right now other than the PEG tube. My doctors believe that 35 radiation treatments with Chemo (every third week (cisplatin)) for the next 3 weeks followed by more chemo (cisplatin and 5FU) for 2 more months could be the answer. They suspect that the EB Virus and my being half Vietnamese might have a role with this cancer. I cant help but keep shaking my head in disbelief.
Here is a question....Did most of you continue working or try to through your treatments?0 -
No wayCathelen72 said:THANK YOU!
Thank you all! Its incredible how much better I feel after reaching out. I don't feel so alone anymore. Here is a bit more info on my case. They have found the primary source right in the center of my nasopharynx and also a mass to the left. Also there are a few lymph nodes in the left side and center of my neck that have tumors. No surgery for me right now other than the PEG tube. My doctors believe that 35 radiation treatments with Chemo (every third week (cisplatin)) for the next 3 weeks followed by more chemo (cisplatin and 5FU) for 2 more months could be the answer. They suspect that the EB Virus and my being half Vietnamese might have a role with this cancer. I cant help but keep shaking my head in disbelief.
Here is a question....Did most of you continue working or try to through your treatments?
But I'm an outdoor guide. It would have been pretty rough doing what I do. I might have been able to do office type work but it sure would have sucked(more than normal). It was like a full-time job getting chemo and rads and then tube-feeding. Can't imagine working through it.
Bob0 -
WorkingCathelen72 said:THANK YOU!
Thank you all! Its incredible how much better I feel after reaching out. I don't feel so alone anymore. Here is a bit more info on my case. They have found the primary source right in the center of my nasopharynx and also a mass to the left. Also there are a few lymph nodes in the left side and center of my neck that have tumors. No surgery for me right now other than the PEG tube. My doctors believe that 35 radiation treatments with Chemo (every third week (cisplatin)) for the next 3 weeks followed by more chemo (cisplatin and 5FU) for 2 more months could be the answer. They suspect that the EB Virus and my being half Vietnamese might have a role with this cancer. I cant help but keep shaking my head in disbelief.
Here is a question....Did most of you continue working or try to through your treatments?
I was diagnosed with stage 4 nasopharyngeal carcinoma last December, had 3 cisplatin and 36 rad. Waiting for my first PET scan next week. The cancer itself stopped me from working, and after the treatment began, it was so overwhelming, work would have been impossible due to weight loss, and the oral issues from the rad. My blessing was a great home-visitation nurse that gave me IV fluids and support rather than drag myself to the treatment center.
It was a challenge to get this far, but you will do it :-) My thoughts are with you,
Rick0 -
WorkedCathelen72 said:THANK YOU!
Thank you all! Its incredible how much better I feel after reaching out. I don't feel so alone anymore. Here is a bit more info on my case. They have found the primary source right in the center of my nasopharynx and also a mass to the left. Also there are a few lymph nodes in the left side and center of my neck that have tumors. No surgery for me right now other than the PEG tube. My doctors believe that 35 radiation treatments with Chemo (every third week (cisplatin)) for the next 3 weeks followed by more chemo (cisplatin and 5FU) for 2 more months could be the answer. They suspect that the EB Virus and my being half Vietnamese might have a role with this cancer. I cant help but keep shaking my head in disbelief.
Here is a question....Did most of you continue working or try to through your treatments?
I worked during treatment...but.
I am an IT person and mainly work on database modeling, forecasting, planning, etc...
I worked from home from Jan2009 - August2009, going into the office during meetings and such. I connected to my work computers over the internet and worked on my schedule. I met all of my reports and deadlines...
But if I would have to work a strict regime or out in the elements with a lot of physical activity, I couldn't have done it.
I did go fishing and do yard work etc, most of all that time other than abut the 4th week into the concurrent chemo/rads. LOL, that's when I wasn't doing real work...
I had a similar regime as you will go through it sounds.
I had nine weeks (three week cycles of Cisplatin, Taxotere and 5FU (5FU in a fanny pak work for 4 days of the cycle)). Then seven weeks of concurrent weekly Carboplatin and 35 daily rads.
No surgery other than the tonsils coming out. I did have a port installed in my chest for the chemo induction...no peg though.
Best,
John0 -
Hi CathelenCathelen72 said:THANK YOU!
Thank you all! Its incredible how much better I feel after reaching out. I don't feel so alone anymore. Here is a bit more info on my case. They have found the primary source right in the center of my nasopharynx and also a mass to the left. Also there are a few lymph nodes in the left side and center of my neck that have tumors. No surgery for me right now other than the PEG tube. My doctors believe that 35 radiation treatments with Chemo (every third week (cisplatin)) for the next 3 weeks followed by more chemo (cisplatin and 5FU) for 2 more months could be the answer. They suspect that the EB Virus and my being half Vietnamese might have a role with this cancer. I cant help but keep shaking my head in disbelief.
Here is a question....Did most of you continue working or try to through your treatments?
I am also half Vietnamses. My husband is 47 years old and is also Vietnamses. He has just finished with his treatment for NPC stage 3 at Johns Hopkins hospital 1week ago so he is still vey sick and weak. His treatment was exactly like your.Chemo (cisplatin and 5FU) and 35 radiations. He is - for EB but + for HPV. My advice is relax and enjoy the food that you like while you can. As I understand this type of cancer is very responsive to chemo/radiation treatment and you can beat it. My husdand handled the chemo fine but the radiation was very brutal. It is definitely
is a very aggressive treatment. The last 4 weeks of the treatment is the hardest and my husband had to depend on the feeding tube 100% for his nutrient and hydration since he could not even swallow liquid and is still using it now.
My husdand did work a little bit for the first 3 weeks then stayed home for the rest of the treatment and he is still home now 1 week post treatment Where are you being treated? Make sure you are going to experts in the head and neck cancer.
Stay strong. It is not easy but you can do it.0 -
workTuongvi said:Hi Cathelen
I am also half Vietnamses. My husband is 47 years old and is also Vietnamses. He has just finished with his treatment for NPC stage 3 at Johns Hopkins hospital 1week ago so he is still vey sick and weak. His treatment was exactly like your.Chemo (cisplatin and 5FU) and 35 radiations. He is - for EB but + for HPV. My advice is relax and enjoy the food that you like while you can. As I understand this type of cancer is very responsive to chemo/radiation treatment and you can beat it. My husdand handled the chemo fine but the radiation was very brutal. It is definitely
is a very aggressive treatment. The last 4 weeks of the treatment is the hardest and my husband had to depend on the feeding tube 100% for his nutrient and hydration since he could not even swallow liquid and is still using it now.
My husdand did work a little bit for the first 3 weeks then stayed home for the rest of the treatment and he is still home now 1 week post treatment Where are you being treated? Make sure you are going to experts in the head and neck cancer.
Stay strong. It is not easy but you can do it.
Tuongvi- very glad to get the update. Sounds like your hubbie's right on track with how it can go, though some may have it better. We are all different.
Catherine- one thing I considered, bigtime, was the immune system getting maxed just dealing with the chemo, and in the work place you may be subjected to something your system cannot deal with good enough to prevent a complication. Most of us, depending on the particulars of the job and treatment, do take a leave of absence. I took 3-months off.
Are you being treated at a major C center? It would seem to me that if the Primary is known, and can be removed, it seems that route may be typical. You might wanna ask your ENT why he doesn't want to remove it, if said Tumor is the Primary from which your C has spread. Knowing the Primary does give them a specific target to blast with the rads, but it is asking a lot of the rads to get the job done- though they could be doing this to shrink and neutralize the Primary so that later they may remove it with an Op that enables them to remove less mass than if they did the Op before tx. Good to hear they did find it.
kcass0 -
Cathelen, love your picture,Cathelen72 said:THANK YOU!
Thank you all! Its incredible how much better I feel after reaching out. I don't feel so alone anymore. Here is a bit more info on my case. They have found the primary source right in the center of my nasopharynx and also a mass to the left. Also there are a few lymph nodes in the left side and center of my neck that have tumors. No surgery for me right now other than the PEG tube. My doctors believe that 35 radiation treatments with Chemo (every third week (cisplatin)) for the next 3 weeks followed by more chemo (cisplatin and 5FU) for 2 more months could be the answer. They suspect that the EB Virus and my being half Vietnamese might have a role with this cancer. I cant help but keep shaking my head in disbelief.
Here is a question....Did most of you continue working or try to through your treatments?
Cathelen, love your picture, the light is gorgeous on your pretty face.
I did not work through treatment. I had a neck dissection then 7 teeth pulled, then peg tube placed, then 30 rads. I was the manager or a shoe store though and I was REQUIRED to work a minimum of 48 hrs a week. Must work at least 8 hrs every Friday, Saturday, and Monday. Must close three nights a week, getting out at 9:30 at night. 10 pm by the time I got home. Then I also would work two 12.5 hr days a week. There just weren't enough hours in the day, impossible. Even if they would have worked with me on the hours, I couldn't physically handle the job requirements, never mind being constantly exposed to the public and their germs. I also have a serious blood disorder and just a fungal infection or a cold during radiation and I could have died.
I know others that had calmer jobs, and less hours, and flexible bosses, and not as many side effects as I had, were able to work. For me, honestly, I looked at surviving treatment as my new job. Also between my neck dissection 1/7/09 and the start of rads 4/6/09, I worked on trying to boost my immune system, gaining some weight, and getting a 2nd and 3rd opinion. I tried to eat nutrient dense foods and I juiced every day, as I said, I looked at kicking cancers arse as my new job.
0 -
about worksweetblood22 said:Cathelen, love your picture,
Cathelen, love your picture, the light is gorgeous on your pretty face.
I did not work through treatment. I had a neck dissection then 7 teeth pulled, then peg tube placed, then 30 rads. I was the manager or a shoe store though and I was REQUIRED to work a minimum of 48 hrs a week. Must work at least 8 hrs every Friday, Saturday, and Monday. Must close three nights a week, getting out at 9:30 at night. 10 pm by the time I got home. Then I also would work two 12.5 hr days a week. There just weren't enough hours in the day, impossible. Even if they would have worked with me on the hours, I couldn't physically handle the job requirements, never mind being constantly exposed to the public and their germs. I also have a serious blood disorder and just a fungal infection or a cold during radiation and I could have died.
I know others that had calmer jobs, and less hours, and flexible bosses, and not as many side effects as I had, were able to work. For me, honestly, I looked at surviving treatment as my new job. Also between my neck dissection 1/7/09 and the start of rads 4/6/09, I worked on trying to boost my immune system, gaining some weight, and getting a 2nd and 3rd opinion. I tried to eat nutrient dense foods and I juiced every day, as I said, I looked at kicking cancers arse as my new job.
When I was going through first part of the cancer treatments like chemo I was able to work from home since I was working as a tech support for a local ISP at the time. But I could not work after I started my radiation treatments because my throat was so raw I could barely talk on the phone for 5-7 hours so basically them 7 weeks during radiation I wasnt working but I was on unpaid-FMLA (since I was only part-time). But after treatments was completed I could not work still but after 3 months I was able go back to work (dec 2010) but then came January of this year they let me go because I wanted to start my own business because I could not really talk on the phone that much because of raw throat and my speech was so messed up. As of today my speech is still messed up a bit and the rawness in the throat is still there but it not as much it was like last year around this time.
But I am on disability from the government due to this NPC cancer.
So come this December they are going to re-check my medical records to see if I am still disabled which I am sure I am going to get my permanent disability since I am dealing with neck and shoulder problems,TMJD, major hearing loss in both ears.0 -
Hi CathelenCathelen72 said:THANK YOU!
Thank you all! Its incredible how much better I feel after reaching out. I don't feel so alone anymore. Here is a bit more info on my case. They have found the primary source right in the center of my nasopharynx and also a mass to the left. Also there are a few lymph nodes in the left side and center of my neck that have tumors. No surgery for me right now other than the PEG tube. My doctors believe that 35 radiation treatments with Chemo (every third week (cisplatin)) for the next 3 weeks followed by more chemo (cisplatin and 5FU) for 2 more months could be the answer. They suspect that the EB Virus and my being half Vietnamese might have a role with this cancer. I cant help but keep shaking my head in disbelief.
Here is a question....Did most of you continue working or try to through your treatments?
I was able to work through both of my treatments but only because I work for a company that when they say they care about there people they mean what they say.
All the best to you
Hondo0 -
Hi RickKenspoppa said:Working
I was diagnosed with stage 4 nasopharyngeal carcinoma last December, had 3 cisplatin and 36 rad. Waiting for my first PET scan next week. The cancer itself stopped me from working, and after the treatment began, it was so overwhelming, work would have been impossible due to weight loss, and the oral issues from the rad. My blessing was a great home-visitation nurse that gave me IV fluids and support rather than drag myself to the treatment center.
It was a challenge to get this far, but you will do it :-) My thoughts are with you,
Rick
Welcome to the family of NPC my friend here on CSN glad you joined us and hope you plan to stay.
All the best and please keep posting
Hondo0 -
Hi Catherine
I was 37 with three children ages 9,3 and 6 months old when I was diagnosed with nasopharyngeal carcinoma stage II.I also had a peg tube put in before I started my 35 radiation treatments and three cisplatin doses which I was only able to take two.Having the peg tube was a life saver and I also could not have made it with out hydration therapy.It is a hard treatment but you can make it through.Just know that, as hard as it gets it will pass and you will get better and at the end you will have beat the cancer.
Laura0
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