Calling all NPC Starters & Survivors

Kent Cass

debbiejeanne said:

congrats, Kent!!
God
congrats, Kent!!
God Bless,
Debbie

the new belly button
Got it out of 5/4, saw my regular Dr. on 5/24, and am still having to keep it covered. Largest negative- picked-up a nasty Cold at the Dr's. office on 5/24, and it's running me thru the ringer- had to go back to see him today for an Antibiotic.

Good idea to add to this NPC thread- still new NPC people coming forward, you know.

Thanks

kcass

Hondo

Kent Cass said:

the new belly button
Got it out of 5/4, saw my regular Dr. on 5/24, and am still having to keep it covered. Largest negative- picked-up a nasty Cold at the Dr's. office on 5/24, and it's running me thru the ringer- had to go back to see him today for an Antibiotic.

Good idea to add to this NPC thread- still new NPC people coming forward, you know.

Thanks

kcass

Hi Kent

You are so right for many years I thought that I was the only person in the USA with this NPC. It was not till I found CSN that I realized that there are many others who have been there and survived and other just starting the journey.

I am just glad that like you I can be part of a family of support for other who have been told they have NPC cancer.

rbw60

Survivor
I was first diagnosed in 2-2009, treatment started in May, finished Chemo, then Rad around end of Sept.
Do not know How long I have left to live, My second CT showed a Tumor in Right Lung.

God Bless to all and Live life to the fullest everyday, enjoy the little things and do some things you always wanted to do before time slips away.

Robert

Hondo

rbw60 said:

Survivor
I was first diagnosed in 2-2009, treatment started in May, finished Chemo, then Rad around end of Sept.
Do not know How long I have left to live, My second CT showed a Tumor in Right Lung.

God Bless to all and Live life to the fullest everyday, enjoy the little things and do some things you always wanted to do before time slips away.

Robert

Hi Robert
I am sorry to hear that the cancer is now in your lungs too, as I know the feeling of hearing a doctor telling you that you have cancer again. You are a strong man of faith as I read on your post and God has a mission for each of us here on this earth, sometimes we don’t understand the mission when sickness comes our way. Why cancer three times for me I will never understand but I do plan to ask him when we all get to heaven. I do my best to help everyone I meet by helping there physical need first and if they are open trying to help there spiritual needs. About five years ago my cancer came back but stopped growing all of a sudden; doctors can’t understand it as I was not on any treatment at the time. Like you said I don’t know how long I have to live, but I will live until my mission is finish.

Faith is the substance of things hoped for, the evidence of things not seen.

God bless and be with you in his work shop.

survivor31

Hondo said:

Hi Robert
I am sorry to hear that the cancer is now in your lungs too, as I know the feeling of hearing a doctor telling you that you have cancer again. You are a strong man of faith as I read on your post and God has a mission for each of us here on this earth, sometimes we don’t understand the mission when sickness comes our way. Why cancer three times for me I will never understand but I do plan to ask him when we all get to heaven. I do my best to help everyone I meet by helping there physical need first and if they are open trying to help there spiritual needs. About five years ago my cancer came back but stopped growing all of a sudden; doctors can’t understand it as I was not on any treatment at the time. Like you said I don’t know how long I have to live, but I will live until my mission is finish.

Faith is the substance of things hoped for, the evidence of things not seen.

God bless and be with you in his work shop.

Im a NPC cancer survivor of
Im a NPC cancer survivor of four months God bless everyone

Kent Cass

survivor31 said:

Im a NPC cancer survivor of
Im a NPC cancer survivor of four months God bless everyone

Bob
Prayers are with you. Know it, and please don't give-up Hope.

Believe

kcass

shine1113

rbw60 said:

Survivor
I was first diagnosed in 2-2009, treatment started in May, finished Chemo, then Rad around end of Sept.
Do not know How long I have left to live, My second CT showed a Tumor in Right Lung.

God Bless to all and Live life to the fullest everyday, enjoy the little things and do some things you always wanted to do before time slips away.

Robert

prayer power...
Hi Robert!

I am an 11-year survivor. I underwent external(cobalt) and internal (brachytherapy) radiation. By Go's grace, I have remained "so far, so good" in this our spiritual journey.

Let's continue to pray for one another. Graces are in place... Our Almighty Big G is with us every step of the way from day 1 of our NPC.

Blessings are upon you!

lady4darknight

stevenl said:

coughing
Hey George,
I have found that when I cough 3 to 5 times I am going to sneeze. And boy, does that hurt.
Oh yea, hey Mick got that voice back eh? That's great because I know that will help you recover more quickly if you can jam and sing some. Whip out the axe and and start whackin away man!!!

George, hang in there man. I finished treatment 3 weeks ago. IT WAS HELL GOING THROUGH IT,
but there does come an end to it. If you have pain get something for it so you nare not fighting the pain, but the C instead.

Best to you both,
Steve

sneezing
Hey Steve,
The same happens to me when I get coughing, I sneeze and it does hurt. But since I haven't sneezed in 2 years I take that as progress.
George it does get better. I can talk, swallow, and eat albeit slowly and I am 6 weeks post with repeat scans in the morning. And do get something for the pain...one this thing to deal with.
Mick, great news on the voice and love your new pic.
God bless to all.

Debbie

hawk711

Coupe35 said:

Question: Optic nerve damage
Did anybody have any optic nerve damage while taking the radiation.

eye damage
Hi
I had a torn retina that I think was caused by the radiation.....I has to have eye surgery just 2 weeks after the radiation ended. I blamed it on the vomiting that I went through, but I have a strong feeling about the radiation now...
Steve

hawk711

shine1113 said:

prayer power...
Hi Robert!

I am an 11-year survivor. I underwent external(cobalt) and internal (brachytherapy) radiation. By Go's grace, I have remained "so far, so good" in this our spiritual journey.

Let's continue to pray for one another. Graces are in place... Our Almighty Big G is with us every step of the way from day 1 of our NPC.

Blessings are upon you!

prayer power
I love this post! Keep it all in perspective, we all have 24 hours in a day and we can be happy or depressed. It's our choice. I am not a religious man, but this cancer brought out the desire to be closer to god. I am working on how to do that now. I am starting to attend church and want to help others somehow. Thanks for the positive note. It is good to see someone with 11 years of surviving is still positive and helping others.
Bless you
Steve

Hondo

hawk711 said:

prayer power
I love this post! Keep it all in perspective, we all have 24 hours in a day and we can be happy or depressed. It's our choice. I am not a religious man, but this cancer brought out the desire to be closer to god. I am working on how to do that now. I am starting to attend church and want to help others somehow. Thanks for the positive note. It is good to see someone with 11 years of surviving is still positive and helping others.
Bless you
Steve

Hi Steve


Glad to have you here with us

All the best to you
Hondo

johnlax38

I'm still in treatment but I
I'm still in treatment but I recognize myself as a survivor because I am still here. The tumor itself cannot be seen by the eye nor felt by the hand. I have two chemos left, went through 8weeks of rads. I was diagnosed April 2010 and my last treatment is on the week of September 30th. I can see the light at the end of the tunnel and I can't wait.

Hondo

johnlax38 said:

I'm still in treatment but I
I'm still in treatment but I recognize myself as a survivor because I am still here. The tumor itself cannot be seen by the eye nor felt by the hand. I have two chemos left, went through 8weeks of rads. I was diagnosed April 2010 and my last treatment is on the week of September 30th. I can see the light at the end of the tunnel and I can't wait.

Hi John

You are at the finish line my friend and ready to cross over to a Survivor we are all glad to have you here as part of our family.

shine1113

hawk711 said:

prayer power
I love this post! Keep it all in perspective, we all have 24 hours in a day and we can be happy or depressed. It's our choice. I am not a religious man, but this cancer brought out the desire to be closer to god. I am working on how to do that now. I am starting to attend church and want to help others somehow. Thanks for the positive note. It is good to see someone with 11 years of surviving is still positive and helping others.
Bless you
Steve

blessings!
Welcome to our on-line home!

Being united and supportive of each other through this community is a blessing that heals our whole being - mind, body and spirit. Definitely, God is making His loving moves in each of us. Let's continue to draw close to Him through prayer. Indeed, our NPC is a spiritual journey that has all the more deepened and strengthened my faith. Alongside being thankful for managing to stay "so far, so good" for 11 years now, is gratefulness to the Most High for making me a conduit of hope, love and inspiration to family, friends. For these reasons, I persevere in staying positive and helping others (in my small way) to see the graces that line our big c path.

Let's celebrate life everyday! God bless you more!

shine1113

survivor31 said:

Im a NPC cancer survivor of
Im a NPC cancer survivor of four months God bless everyone

great!
As my radiation-oncologist always remind me... Stay with God, by His grace all shall be well! He is taking care of us as we take care of ourselves. Be assured of my prayers!

shine

shine1113

survivor31 said:

Im a NPC cancer survivor of
Im a NPC cancer survivor of four months God bless everyone

great!
As my radiation-oncologist always remind me... Stay with God, by His grace all shall be well! He is taking care of us as we take care of ourselves. Be assured of my prayers!

shine

adventurebob

NPC and me
Hey all. Been on the boards for awhile but hadn't seen this from Hondo. I was diagnosed May 20, 2010 with NPC Stage 4 with mets to both lymph nodes, the brain stem, sternum, sacrum, tailbone, and assorted other bones of the spine. I completed 3 rounds of Cisplatin/Gemzar in August and had a clean PET scan. I've had 5 weeks off from chemo now and just finished a 40 mile solo backpacking trip in the high sierras of Yosemite last week. 2 days after that I checked in to same day surgery to have a PEG installed for the 35 rads and 3 rounds of Cisplatin scheduled for tomorrow. The procedure was supposed to be routine but ended up being a mini-nightmare of sorts as my digestive system shut down and my cavity filled with gas applying horrible internal pressure to my organs. I was released from the hospital today as I finally passed gas last night and began releasing the pressure. It looks like I'll start chemo/rads on Wednesday. I need a little time to recover from the PEG surgery so maybe even next week. I am a survivor and plan on being that way until I'm old. I'm only 39 and have been very healthy and active most of my life. I'm actually an outdoor guide in the SF Bay area and guided for years in Grand Canyon as well. Cancer sucks! I didn't choose it but I damn sure choose to fight it. And that's what I'm doing. I really love this board and look forward to chatting with the people on it and helping each other out.

kit0

11 month survivor
Hi all, my husband was diagnosed with NPC Stage II - Sep 2009, tumor was right behind nasopharynx. Treatment was 30rads and 2 cisplatin. I remember talking to Hondo and couple of you others when he was going through treatment and I want to thank you all for your support. He is about 95% recovered, only lingering issue is the dry mouth. Taste buds are back, although different, he can still enjoy food. He's getting back to playing sports (football/basketball) although he notices he tires more easily. CT scheduled in a few days and I have no doubt that it will be all clear.

There is one thing I would like to mention, which I found very little information on when we were going through it, was the effects of infertility. Onc was not concerned at first bc treatment was to be only 30rads to head/neck, then when PET scan showed signs of mestasis cisplatin was recommended, thats when the question of infertility was asked and Onc could not give us an answer. We did not like the uncertainty, so before chemo decided to sperm bank. 6 months post treatment, his sperm was abnormal (special term for non-existent in the fertility world). We started seeing a fertility specialist that recommended herbs and meds that is helping in the recovery. Family is very important to us and one day we hope to start our own. So for those that are in the ages of fertility and going to start treatment, look into banking. I have posted more details on another thread http://csn.cancer.org/node/191610

To all the survivors, congrats and live life to the fullest

timreichhart

kit0 said:

11 month survivor
Hi all, my husband was diagnosed with NPC Stage II - Sep 2009, tumor was right behind nasopharynx. Treatment was 30rads and 2 cisplatin. I remember talking to Hondo and couple of you others when he was going through treatment and I want to thank you all for your support. He is about 95% recovered, only lingering issue is the dry mouth. Taste buds are back, although different, he can still enjoy food. He's getting back to playing sports (football/basketball) although he notices he tires more easily. CT scheduled in a few days and I have no doubt that it will be all clear.

There is one thing I would like to mention, which I found very little information on when we were going through it, was the effects of infertility. Onc was not concerned at first bc treatment was to be only 30rads to head/neck, then when PET scan showed signs of mestasis cisplatin was recommended, thats when the question of infertility was asked and Onc could not give us an answer. We did not like the uncertainty, so before chemo decided to sperm bank. 6 months post treatment, his sperm was abnormal (special term for non-existent in the fertility world). We started seeing a fertility specialist that recommended herbs and meds that is helping in the recovery. Family is very important to us and one day we hope to start our own. So for those that are in the ages of fertility and going to start treatment, look into banking. I have posted more details on another thread http://csn.cancer.org/node/191610

To all the survivors, congrats and live life to the fullest

I am 2 months survivor
I am an 2 month survivor of NPC and now the focus for me is getting more better and hopefully start a family here soon.

kdwers

adventurebob said:

NPC and me
Hey all. Been on the boards for awhile but hadn't seen this from Hondo. I was diagnosed May 20, 2010 with NPC Stage 4 with mets to both lymph nodes, the brain stem, sternum, sacrum, tailbone, and assorted other bones of the spine. I completed 3 rounds of Cisplatin/Gemzar in August and had a clean PET scan. I've had 5 weeks off from chemo now and just finished a 40 mile solo backpacking trip in the high sierras of Yosemite last week. 2 days after that I checked in to same day surgery to have a PEG installed for the 35 rads and 3 rounds of Cisplatin scheduled for tomorrow. The procedure was supposed to be routine but ended up being a mini-nightmare of sorts as my digestive system shut down and my cavity filled with gas applying horrible internal pressure to my organs. I was released from the hospital today as I finally passed gas last night and began releasing the pressure. It looks like I'll start chemo/rads on Wednesday. I need a little time to recover from the PEG surgery so maybe even next week. I am a survivor and plan on being that way until I'm old. I'm only 39 and have been very healthy and active most of my life. I'm actually an outdoor guide in the SF Bay area and guided for years in Grand Canyon as well. Cancer sucks! I didn't choose it but I damn sure choose to fight it. And that's what I'm doing. I really love this board and look forward to chatting with the people on it and helping each other out.

A little in common
Hi, Hope you are doing well. Wondering how you are after your treatment. My husband completed treatment the end of February for Stage IV NPC with mets to nodes and liver (both lobes). Other than weight loss (45 lbs) he is doing very well. He was treated at MD Anderson in Houston, TX. He too had a clean scan after his Chemo and before radiation. He is now due for his 2nd PET since completion of chemoradiation. He was on a different Chemo. He had Carboplatin, Taxotere, and 5-FU. He had Cisplatin with the radiation. Just wanted to check and see how things were since you were both a stage IV. We are believing in a miracle, and praying we don't see this nasty illness ever again!