Introduction
Hello- I've been lurking since I received official word of my Cancer on February 28th. I've been diagnosed with Nasopharngeal Carcinoma(Poorly differentiated, nonkeritinizing, HPV+, EBV-, stage III T1,N2,MO) Whew! Since diagnosis I've had multiple consultations, Blood work, PET scan, Contrast MRI, Radiation mask fitting and simulation, surgery to install a VAP, review of the Oncologists plan and exam and consultion at the Stanford Tumor Board and the Dental checkup and cleaning. I was supposed to start treatment on Monday but the Radiation Oncologist wants another MRI to complete the mapping. I hate the delays!!!! Not that I'm looking forward to what they have in store for me, but this Cancer isn't shrinking. Anyway, just wanted to say Hi and let everyone know how informative this website has been. I'm one of those guys who has to research everything until I'm exausted and then research some more. There is lots of scary stuff out there on the web and I found this sight to be both informative and somewhat comforting. Anyway, wish me luck as I embark on the journey!
Comments
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Welcome
You are most welcome at our little club. Sorry, you are a full member (rather than an honorary one). We all are supportive of each other. Each of us has a little piece of the picture and from this board, from your friends and family, and from you professional health care team, you will receive the care and support needed to pull through the challenges. Rick.
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Welcome to a community of people who understand and care
I, too, was so glad to find this forum when my son was diagnosed with throat cancer and I was desperate to find out as much as information as I could as quickly as possible. The train seems to leave the station really fast after the biopsy report is onboard. Without this online community of caring people so generously sharing their experiences and tips for survival, I would never have been able to provide the level of support needed while serving as a caregiver for my son while he went through treatment. If you have someone who will be staying with you as a caregiver during your treatment, I would encourage you to have them join this website forum, too. While many of the members are patients and survivors, there are also many caregivers who post and provide valuable insight about their role in this journey. The survivors and caregivers who have been through this have been wonderful in offering the benefit of their wisdom through experience. I am very grateful for all of them and glad that you, too, have found this place of comfort and information.
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Hi and welcome to the club
nobody wants to be part of. Sounds like you've been moving right along....tho it seems to take a LONG time to get the show on the road, it appears you are almost there. Yes....regardless of what they have in store for you, getting on the bus and finally getting to participate in in the fight does wonders for our mental health.....waiting is the worst part.
I was diagnosed with almost exactly what you were.....NPC, Stage III T3,N2, M0.....not EBV or HPV that I know of, tho. Sending you huge Mojo and prayers.....you will get thru this, that's a fact.....and as my ENT says....this bump in the road will soon be in your rearview mirror.
p
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Lettum...
LTW
First, now that you have found a good, informative, and supporting froum..., minimize your internet searching, it'll scare the crap from you, LOL...
Once you get started, you won't have a chance to look back for a few months..., so even though it's dragging a little, they get you going soon...
Hang in there, check the SuperThread like mentioned... Oh, and hang on for the ride...
Best,
John
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Welcome Letum...Skiffin16 said:Lettum...
LTW
First, now that you have found a good, informative, and supporting froum..., minimize your internet searching, it'll scare the crap from you, LOL...
Once you get started, you won't have a chance to look back for a few months..., so even though it's dragging a little, they get you going soon...
Hang in there, check the SuperThread like mentioned... Oh, and hang on for the ride...
Best,
John
Sorry you have to join our club....but I agree, they are a great bunch.
We're with you on this journey....keep us posted and know we care. Whispered a prayer before I hit submit that your treatments go well and you will be well at the end of them all.
Best,
Tim
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Thanks
Thanks for the warm welcome. I have already utilized some of the recommendations in the superthread and began to build an arsenal of supplies. I appreciate the hard work that must have gone into compiling the list. I will keep everyone posted on my progress and will try to remain positive throughout the process. Looks like I'll be getting Cisplatin every 3 weeks concurrent with radiation to the Tumor and neck and then a bonus round of Cisplatin and 5FU with a pump after the radiation. Sounds fun! I hear it's a grueling regimen and difficult to complete. We'll see soon enough! Take care everyone!
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i've read its a tough butletumwork said:Thanks
Thanks for the warm welcome. I have already utilized some of the recommendations in the superthread and began to build an arsenal of supplies. I appreciate the hard work that must have gone into compiling the list. I will keep everyone posted on my progress and will try to remain positive throughout the process. Looks like I'll be getting Cisplatin every 3 weeks concurrent with radiation to the Tumor and neck and then a bonus round of Cisplatin and 5FU with a pump after the radiation. Sounds fun! I hear it's a grueling regimen and difficult to complete. We'll see soon enough! Take care everyone!
i've read its a tough but doable road. you will do it. i will keep u n my prayers.
God bless,
deb
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Howdy
letumwork,
Welcome to the H&N forum, sorry that you qualify. Lurking or not , glean what you can from us, radiation has given us super powers (not really I am just full of it).
Anyway, you sound ready, but you should check out the superthread for recommended items to have prior to going into battle. The scary stuff will calm down soon as your body adjusts to the treatment regime. Drop in anytime to ask questions.
Wishing you a smooth ride,
Matt
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Tough, But Doable...letumwork said:Thanks
Thanks for the warm welcome. I have already utilized some of the recommendations in the superthread and began to build an arsenal of supplies. I appreciate the hard work that must have gone into compiling the list. I will keep everyone posted on my progress and will try to remain positive throughout the process. Looks like I'll be getting Cisplatin every 3 weeks concurrent with radiation to the Tumor and neck and then a bonus round of Cisplatin and 5FU with a pump after the radiation. Sounds fun! I hear it's a grueling regimen and difficult to complete. We'll see soon enough! Take care everyone!
Many here have had a similar regime'..
I had Cisplatin, Taxotere and 5FU infuse in three week cycles (nine weeks), up front, then seven weeks of concurrent weekly chemo and 35 daily rads. With Amifostine Injections each of those days just before the rads.as a bonus... STGIII Tonsils and Lymphnode, HPV+ ~ 2009.
Best advice, stay super hydrated, take in your calories in whatever way you can, keep a positive attitue, and have a sense of humor...(abi-normal in my case).
Love your Lab photo, there's many pet lovers on this site as well..., occasionally I'll start a thread to post them up... My wife and I are lab lovers too..., here is my two hard workers enjoyig the pool, LOL.
Kali & Jazzy ~ Pool Side
Best ~ John
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Before you know it....
Welcome letum,
Between the 2nd opinions, surgeries etc, it was 3.5 months until treatment actually started treatment. I did the same thing concerning research but still got hit upside the head
Now that I'm on the front lines (2nd week of 6 starting tomorrow), I'm a bit more battle hardened Positive thoughts and prayers.
"T"
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Welcomeletumwork said:Thanks
Thanks for the warm welcome. I have already utilized some of the recommendations in the superthread and began to build an arsenal of supplies. I appreciate the hard work that must have gone into compiling the list. I will keep everyone posted on my progress and will try to remain positive throughout the process. Looks like I'll be getting Cisplatin every 3 weeks concurrent with radiation to the Tumor and neck and then a bonus round of Cisplatin and 5FU with a pump after the radiation. Sounds fun! I hear it's a grueling regimen and difficult to complete. We'll see soon enough! Take care everyone!
Welcome to the forum.
You have found the best possible source of support you can ever imagine. Everyone here has either been thru the battle or is currently in the fight. We all do our best to help each other.
This is the time where everything is a bit of a blur with tests, consults and scheduling. It sounds like you already have a treatment plan, so now it's a matter of getting started.
So, ask any questions you may have and keep consulting the SuperThread. It was compiled over the last few years by one of our own members (Sweetblood) and is updated by her and Skiffin 16.
You are doing a great job getting yourself prepared.....you must have been a Boy Scout. The treatment sucks, but it is doable.
I wish you a quick and uneventful journey. You can do it !
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Thick Skinned...fishmanpa said:Before you know it....
Welcome letum,
Between the 2nd opinions, surgeries etc, it was 3.5 months until treatment actually started treatment. I did the same thing concerning research but still got hit upside the head
Now that I'm on the front lines (2nd week of 6 starting tomorrow), I'm a bit more battle hardened Positive thoughts and prayers.
"T"
Yup..., we are all (at least the rads people), are ummm, a bit more thick skinned than before...
JG
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That's exactly the treatmentletumwork said:Thanks
Thanks for the warm welcome. I have already utilized some of the recommendations in the superthread and began to build an arsenal of supplies. I appreciate the hard work that must have gone into compiling the list. I will keep everyone posted on my progress and will try to remain positive throughout the process. Looks like I'll be getting Cisplatin every 3 weeks concurrent with radiation to the Tumor and neck and then a bonus round of Cisplatin and 5FU with a pump after the radiation. Sounds fun! I hear it's a grueling regimen and difficult to complete. We'll see soon enough! Take care everyone!
I got....3 Cisplatins, every 3 weeks concurrent with the rads.....and then 3 Cisplatins with 5FU in a pump after radiation was over....I would have liked to skip the last 5FU, but of course didn't.....5FU didn't like me much......
p
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Right behind you.
My husband will be starting his treatment just a few days after you. He had robotic surgery and a neck dissection at Stanford two weeks ago, healing nicely. However, he will be getting treatments at UCSF since it's consderably closer.
I want to share an interesting tip that our radiation oncologist gave us. She said that a recent patient of hers kept a tight schedule of eating, swishing, etc. He wrote it all dwon and had some method of reminding himself. But the most interesting thing was that he brought a thermal container with him filled with crushed ice and held ice and ice water in his mouth until the minute before he had radiation. I think he then took more ice water in his mouth afterwar as well. The doctor said that chilling the mouth tissue before and after really made a difference. This patient developed no sores!
I have never heard of doing that on this board and I love the idea of it! It's practically free! We will certainly try it.
Are you in the bay area?
Helen
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IceHelenBack said:Right behind you.
My husband will be starting his treatment just a few days after you. He had robotic surgery and a neck dissection at Stanford two weeks ago, healing nicely. However, he will be getting treatments at UCSF since it's consderably closer.
I want to share an interesting tip that our radiation oncologist gave us. She said that a recent patient of hers kept a tight schedule of eating, swishing, etc. He wrote it all dwon and had some method of reminding himself. But the most interesting thing was that he brought a thermal container with him filled with crushed ice and held ice and ice water in his mouth until the minute before he had radiation. I think he then took more ice water in his mouth afterwar as well. The doctor said that chilling the mouth tissue before and after really made a difference. This patient developed no sores!
I have never heard of doing that on this board and I love the idea of it! It's practically free! We will certainly try it.
Are you in the bay area?
Helen
That's an interesting tip- I haven't heard of doing this but it's worth a try! I'm located in Clayton which is next to Walnut Creek. I will be getting my Chemo and Radiation at John Muir Hospital since the plan and all of the scans are already complete except for one more MRI needed which will happen Monday and it's 20 minutes from my house. Stanford reviewed the plan and agrees with the treatment as it is pretty standard. Stanford offered a clinical trial that puts the Chemo before the concurrent chemo and radiation but I would have to start the whole process over at their facility thus creating another 3 week delay plus having to either battle hours of traffic each way for treatment or find temporary housing in the area away from my Wife and Daughter and Dog and support group as well as creating issues with my insurance to redo everything that has already been done. I will be receiving follow up treatment at Stanford after the initial treatment is completed since they are better equipped to do surgery for secondaries or recurrence if needed. I guess we're lucky we have so many quality Hospitals in the Bay area. I feel for those that have to travel hundreds of miles to receive the care they need. That would add an extra hardship to the battle that would be difficult to deal with on any level let alone while fighting Cancer.
John
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Clinical Trial..letumwork said:Ice
That's an interesting tip- I haven't heard of doing this but it's worth a try! I'm located in Clayton which is next to Walnut Creek. I will be getting my Chemo and Radiation at John Muir Hospital since the plan and all of the scans are already complete except for one more MRI needed which will happen Monday and it's 20 minutes from my house. Stanford reviewed the plan and agrees with the treatment as it is pretty standard. Stanford offered a clinical trial that puts the Chemo before the concurrent chemo and radiation but I would have to start the whole process over at their facility thus creating another 3 week delay plus having to either battle hours of traffic each way for treatment or find temporary housing in the area away from my Wife and Daughter and Dog and support group as well as creating issues with my insurance to redo everything that has already been done. I will be receiving follow up treatment at Stanford after the initial treatment is completed since they are better equipped to do surgery for secondaries or recurrence if needed. I guess we're lucky we have so many quality Hospitals in the Bay area. I feel for those that have to travel hundreds of miles to receive the care they need. That would add an extra hardship to the battle that would be difficult to deal with on any level let alone while fighting Cancer.
John
Not sure on the "trial" you mention...
That is somewhat how my treatment played out four years ago...
Tonsils out, nine weeks of chemo, (Cisplatin, Taxotere and 5FU) in three weeks cycles. Then seven weeks of concurrent with weekly Carboplatin and daily Amifostine Injections just prior to the 35 daily radiation treatment..
From my understanding there is no specific standard, just what is best currently at the facility. My facility has offered the treatment concuurent first at times, but during the time I had it, chemo before concurrent was their protocul.
JG
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TrialSkiffin16 said:Clinical Trial..
Not sure on the "trial" you mention...
That is somewhat how my treatment played out four years ago...
Tonsils out, nine weeks of chemo, (Cisplatin, Taxotere and 5FU) in three weeks cycles. Then seven weeks of concurrent with weekly Carboplatin and daily Amifostine Injections just prior to the 35 daily radiation treatment..
From my understanding there is no specific standard, just what is best currently at the facility. My facility has offered the treatment concuurent first at times, but during the time I had it, chemo before concurrent was their protocul.
JG
The trial they were offering was a phase 2 trial designed to study if the trial treatment was easier for patients to complete than the standard therapy. It is now a standard therapy for BOT cancer but hasn't been proven to be better for NPC yet. They also indicated that the trial was designed for more advanced cases than mine but they were confident I could participate because my type of Cancer is so rare and they were having problems finding participants. It would have been Neoadjuvant Chemotherapy with TPF(Taxotere, Cisplatin and 5FU) followed by concurrent Cisplatin weekly with radiation. It is probably the same as what you received. I would have done it if it didn't require me to start over creating more delays and the whole logistics aspect of moving the treatment over to Stanford. I can feel the lump on my neck getting bigger so at this point I really want to get going with treatment. Hopefully it is the right choice!
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Howdy and welcomeletumwork said:Trial
The trial they were offering was a phase 2 trial designed to study if the trial treatment was easier for patients to complete than the standard therapy. It is now a standard therapy for BOT cancer but hasn't been proven to be better for NPC yet. They also indicated that the trial was designed for more advanced cases than mine but they were confident I could participate because my type of Cancer is so rare and they were having problems finding participants. It would have been Neoadjuvant Chemotherapy with TPF(Taxotere, Cisplatin and 5FU) followed by concurrent Cisplatin weekly with radiation. It is probably the same as what you received. I would have done it if it didn't require me to start over creating more delays and the whole logistics aspect of moving the treatment over to Stanford. I can feel the lump on my neck getting bigger so at this point I really want to get going with treatment. Hopefully it is the right choice!
I am 3 years out of treatment and had all my treatment at john muir also. They do a great job. Just get started, stay focused, be positive and you will do fine.
all the best,
steve
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