Hi! First post - Just got cancer diagnosis

donfoo

Tim6003 said:

Hi Don....
Sorry you had to join our club ...but it will be a good thing.

I was Base of Tongue Stage III w / 1 Lympe node (so we sound familiar). I also was HPV 16 + (look that up if you have not already)

YOur in for a ride ....but it's doable and you can take us along since many of us have been there.

I only had Erbitux and rads ...never had to have the surgery as the rads and chemo seemes to have done the job well at killing off the cancer.

Best,

Tim

How are you? I read your log
How are you? I read your log and the pattern I am seeing for cancer survivors is this thing, even when beaten down up front, creates many long term side effects. Like laryngitis for a non-throat cancer survivor is more a nuisance but for you it was really much much more than that. What report did you get back from Seattle appt?

Skiffin16

donfoo said:

Pat,
Thanks for your
Pat,
Thanks for your comment. You are one tough dude (dudette?). I read your blog on your last journey, sounds like a pretty long and tough trip, but you are here typing so that is a good sign. After a bit more than a year, how much of your original quality of life do you feel you reclaimed, just curious?

Dude....
Medical/Gardener/Massey Ferguson ~ Extraordinaire...

donfoo

Mikemetz said:

Start with the SUPERTHREAD
If you haven't done so yet, start with the SUPERTHREAD at the top of this board. It has a lot of questions that you probably haven't even thought of yet--and good answers from people here who can answer them from first-hand experience and/or good knowledge.

As you have already learned, this is a wonderful site, with wonderful caring people. I didn't find it until I was 2+ years after treatments, and really wish I had found it at your stage of the game.

I started a blog right after my initial Dx and use that to post my longer thoughts to family, friends and whoever wants to read them. It helps to get the word out to people who are thinking of you, without having to write 10s of individual emails, texts, etc.. You can send me a private email on this site if you want to see my blog.

In the meantime, welcome to a quite exclusive club that no one ever applied for membership to join!

Mike

Personal blog
Hi Mike,

I could not find the link to send you email so was kind of curious if you hold your blog a bit closer and not directly public? As an IT pro who builds websites for a living I think I am going to build my own blog site and then have it private by having an approved registration step. That way everyone who is on the secure site know that what is said there stays only amongst those who are approved members. So far I have not considered create sub sections of the blog site or added access rules to further fence off content.

Given I am going to feel like poo pretty soon, I certainly do not want to make this too complicated for myself or others. Last night, I did sign up a peer buddy to keep watch over the well being of the back end of the site if I can not keep up.

Thanks
Don

donfoo

cureitall66 said:

Welcome Don...
Like you, we too stumbled across this forum and it was the best stumble you could ask for. My loved one was diagnosed this past August with Stage IV SCC BOT w/ 2 lymph nodes (HPV16+). We just finished tx about a week and half ago. It consisted of 7 weeks of rads/chemo. Chemo being Carboplatin with Paclitaxel given once weekly for the 7 weeks and rads were daily (5 days) weekly for the 7 weeks. About half way we needed a PEG (feeding tube). We opted to take our chances without it and were pretty much forced to get it midway as the eating/swallowing were becoming uncomfortable and losing some weight.

You will find this forum very comforting and full of advice from survivors and people that are going through treatment. We consider ourselves a BIG family that all rode the same bus, just had some different seats at times. Feel free to post a new subject of concern anytime. I'm sure you'll get many responders ready and willing to help.

You can pm any of us for any extra detail you would like regarding our specific dx or tx. Most have no problem sharing.

God Bless you on your journey,

~C
(Cureitall)

Hi Cureitall,
Thanks for the
Hi Cureitall,

Thanks for the kind words and validation of the folks on this site. Although already, I feel the warmth and love of true humans only and no a single troll or one to spill ill will and such.

At first I thought, man, it sure seems like a long time ago when getting the diagnosis until this past week finishing treatment. On second thought, the fingers flittering and time goes pretty fast, and in fact, it seems you got the ball moving rather quickly.

So, after a week post 7-week treatment, how are things going? fatigue, pain, other side effects?

Thanks
Don

patricke

WELCOME
Hey Don, welcome to the family. I must say, I am sorry to be putting out the welcome mat for you, but since you have been hit by the beast, this is a great place to call home during your journey. I too was diagnosed with BOT stage IV cancer a smidge over 12 years ago. Yes, you will go through a grueling gauntlet, but you will make it. Always (a word which I rarely use) remember to keep your eyes on the light at the end of the treatment tunnel, and with time your life will get much better on the other side of the treatment and recovery process. The adage "take it one day at a time," I beleive, is essential to remember, even modifying it to "one, hour, minute, second, or nanosecond" as circumstances may demand. The mantra which I have used and continue to use to get me through the most challenging times is "I can do this," which I give you my full and complete permission to also utilize if it fits for you. It's important to keep a sense of humor as much as possible, seek humor stimuli (TV Shows, movies, etc), and positive, enjoyable diversions always, but especially during this journey. These are just some of the things that have enabled me to make the journey, for your to consideration.

I haven't plugged into any of the blogs, and this is the only discussion area that I use, except for the general Chat Room from time to time.

You have started the thousand mile journery, you are in good company.....*

PATRICK

longtermsurvivor

Skiffin16 said:

Dude....
Medical/Gardener/Massey Ferguson ~ Extraordinaire...

Just ran 10k
and made potato soup. Dang I'm good:) Headed to Orlando for the Capital One bowl. My Huskers are gonna have their hands full of Georgia, I'm afraid.

VivianLee5689

patricke said:

WELCOME
Hey Don, welcome to the family. I must say, I am sorry to be putting out the welcome mat for you, but since you have been hit by the beast, this is a great place to call home during your journey. I too was diagnosed with BOT stage IV cancer a smidge over 12 years ago. Yes, you will go through a grueling gauntlet, but you will make it. Always (a word which I rarely use) remember to keep your eyes on the light at the end of the treatment tunnel, and with time your life will get much better on the other side of the treatment and recovery process. The adage "take it one day at a time," I beleive, is essential to remember, even modifying it to "one, hour, minute, second, or nanosecond" as circumstances may demand. The mantra which I have used and continue to use to get me through the most challenging times is "I can do this," which I give you my full and complete permission to also utilize if it fits for you. It's important to keep a sense of humor as much as possible, seek humor stimuli (TV Shows, movies, etc), and positive, enjoyable diversions always, but especially during this journey. These are just some of the things that have enabled me to make the journey, for your to consideration.

I haven't plugged into any of the blogs, and this is the only discussion area that I use, except for the general Chat Room from time to time.

You have started the thousand mile journery, you are in good company.....*

PATRICK

Welcome Don
As you can see we have some great people here. They know a lot and freely give of their time, advice and support. I am sorry you had to find us, but that being said you are in great company. I look forward to seeing you on the other side of this soon.

ditto1

Welcome Don
looks as what could be said to you has been. These are great people and they never sleep or so it seems because if you need to shout out it seems a reply is almost immediate. I was dx with Bot IV back in March, long road to NED but for now thats where Im at. Hope to keep it that way when I have my PET scan on Monday. So again welcome to the best place to be when dealing with the worst thing you can go thru.

Skiffin16

longtermsurvivor said:

Just ran 10k
and made potato soup. Dang I'm good:) Headed to Orlando for the Capital One bowl. My Huskers are gonna have their hands full of Georgia, I'm afraid.

Orlando....
Give me a call, maybe we can get together for a beer, coffee, etc....

JG

cureitall66

donfoo said:

Hi Cureitall,
Thanks for the
Hi Cureitall,

Thanks for the kind words and validation of the folks on this site. Although already, I feel the warmth and love of true humans only and no a single troll or one to spill ill will and such.

At first I thought, man, it sure seems like a long time ago when getting the diagnosis until this past week finishing treatment. On second thought, the fingers flittering and time goes pretty fast, and in fact, it seems you got the ball moving rather quickly.

So, after a week post 7-week treatment, how are things going? fatigue, pain, other side effects?

Thanks
Don

The time....
Don,

Once we got the diagnosis in late August, there were many appointments that came shortly after. In early/mid September we met with the U of Michigan Hospital and were then greeted by our new ENT who gave the evaluation and had initial PET scan. Case was then referred to Board of doctors. Then from there we met with Radiologist & Oncologist that outlined the tx plan. He was then fitted for his mask and a complete dental check up. This all happened within about 1 1/2 - 2 weeks. October 8th we began tx. The first 3 -4 weeks seemed to go fairly quick and then as some of the swelling/discomfort that appeared in the mouth and neck came it seemed like tx slowed down (maybe because we wanted it to go faster it seemed like it). The PEG (feeding tube) was placed about week 4 (wished he would have gotten it before tx, by the time it was scheduled and done, it had been several days without food). Pic line was also inserted about that time as he then needed extra poking/prodding because of the need for IV fluids (which later came out within a week or so due to an infection in the arm). Tx ended November 27. At about 2 weeks post, we are still feeling the tx full swing. Waiting for the next week or two to hopefully see things settle down in regards to pain and starting to get some swallowing down. We will have the PEG for a couple of months.. This is very doable. Go with the mindset that "YOU CAN DO THIS" and "IT'S ONLY TEMPORARY". Take lots of notes from others here and keep coming back to give us your updates. We'll all help you through it.

God Bless you on your journey here. The bus door is open....

~C
(Cureitall)

Billie67

ditto1 said:

Welcome Don
looks as what could be said to you has been. These are great people and they never sleep or so it seems because if you need to shout out it seems a reply is almost immediate. I was dx with Bot IV back in March, long road to NED but for now thats where Im at. Hope to keep it that way when I have my PET scan on Monday. So again welcome to the best place to be when dealing with the worst thing you can go thru.

Don
You sound very happy with your surgeon and that is half the battle. I'm happy that you are in such good hands. I'm in Southern California and I feel equally as lucky with my surgeon at USC H&N keck medical school/hospital. Doesn't it feel good to know we have the best?!
Keep us posted :-)
Billie

donfoo

ditto1 said:

Welcome Don
looks as what could be said to you has been. These are great people and they never sleep or so it seems because if you need to shout out it seems a reply is almost immediate. I was dx with Bot IV back in March, long road to NED but for now thats where Im at. Hope to keep it that way when I have my PET scan on Monday. So again welcome to the best place to be when dealing with the worst thing you can go thru.

Good luck on PET on Monday!
Hoping the best for you on Monday. I rooting for you for sure!

Don