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acceptence & what next?

tonyanddenise's picture
tonyanddenise
Posts: 70
Joined: Jun 2010

This is my second attempt @ the posting as advised by "scam"? Thanks.
I just need to vent a bit. I did not think I saw this all coming, or the events ahead. It seems that everything moves so quickly, overwhelmingly fast. I suppose that is a good thing.
I have had the neck dissection. the tonsillectomy. now waiting for some of the nerves to work again. Trying to back off the pain pills today. RND was this past Wed. day 2 home and already stir crazy. I fear this is more than my wife can bear. Any way, there are so many with bigger troubles. I do not want to fall into the trap of depression. rambling.
How bad is the Rad? really? they want to do both sides of my neck. I asked my ENT about the feeding tube. He just kind of looked @ me in acknowledgment. We don't know what the reality of this is. any input would be appreciated.

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi Tony and Denise,

First, welcome here. Second sorry about your diagnosis. I was diagnosed Jan. 15th with scc stage 4 right tonsil and had a right neck dissection, tonsillectomy and 32 lymph nodes removed. I finished treatments April 9th. There were some rough times during treatment but all in all it went pretty smoothly. I will be returning to work July 5th. I had 6 rounds of chemo, cisplatin, and then 5FU overnight with a fanny pack that administered it overnight. Also, 33 rads. Let me say now that you and your wife CAN do this. No, it will not be easy but it is doable. Everything does move very quickly and that is a good thing. As I said, Jan 15th diagnosed, then 7 days later surgery then 7 days later 6 teeth pulled then 2 weeks later treatment started. It is a whirlwind of activity.

Keep on this site and ask questions the people here are kind and caring and will help you any way they can. Remember a lot of us here have been through it. Hang in there.

Best,
Steve

miccmill's picture
miccmill
Posts: 247
Joined: May 2010

Welcome Tony and Denise and I'm sorry for the reason you've joined this board.

I'm a caregiver. There's a few of us around here.

Encourage your wife to post here and we'll rally around for support. She can do it. You'll do it together.

I know exactly how overwhelming this all feels. Glenn was diagnosed SCC TxN2bMo on 4/1 and he also had CT Scan, PET Scan, Panendoscopy with blind biopsies, Right neck dissection, teeth removal, PEG installation......Chemo started yesterday.

Having that whole planning phase of treatment over with will help some of the feelings of fear and being overwhelmed.

Everyone here is super supportive and everyone has a wealth of information about what treatment may be like.

Keep coming back, the people here are wonderful and have probably been the most important help I've received so far.

Best wishes and God Bless
Lisa

tonyanddenise's picture
tonyanddenise
Posts: 70
Joined: Jun 2010

thank you all for your kindness. Denise an I are .. well stunned at best. Strange how we live our lives knowing these things exist and always happen to "those" other folks. We never realized how prevalent this disease (cancer)was. Denise will be here looking for info and support just as I have been. I am taking your advice to read all. This really helps. Must admit the thought of a feeding tube, sore(beyond) throat maybe losing teeth, hair and good lord knows what else is mind boggling. Going to keep my head up and jump the rest of the way in I suppose!

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

tony, I'm sorry about your diagnosis and welcome you to the CSN. i had cancer on my voicebox. I had 35 rad trmnts. I definitely had to have the feeding tube b/c my throat sweeled so much I could not get food down it. I had the feeding tube approx 7 months and was glad i did. it was the only way to get food in my body. Most here have had the tube and know that it got them thru. We all lost weight and it would have been worse w/o the tube. I lost 80 lbs. As for the rad, it burned my neck really bad, as tho i'd been in a fire. thank God for Aquaphor, it made it better and releived the pain. That pain only lasted a while as the Aquaphor worked quickly. I still have trouble swollowing food sometimes but it has gotten a lot better. My last trmnt was 10/22/09. My tastebuds are still off and I've kinda decided that they always will be, but I don't know for sure. I am best able to eat things in bbq sauce b/c it actually tastes the way it should and the way I remember it tasting.
It is a hard road to travel but you and your wife can and will get thru this. You will find people here are extremely helpful and willing to share their experience so you will know what to expect. It is also ok to come here to vent. We've all done it and it actually helped us feel better. Good luck with your battle and we will all be praying for you and your wife.
God Bless you friend,
Debbie

D Lewis's picture
D Lewis
Posts: 1545
Joined: Jan 2010

Tony;

Ask your ENT (or your oncologist) to refer you to a gastro-enterologist for installation of the feeding tube. Outpatient procedure, doesn't hurt, only takes part of a day. I had lymph nodes removed and the tonsillectomy, then 8 weeks of radiation and three rounds of chemo for a base of tongue cancer that had metastisized to lymph nodes on both sides. I was told that it wasn't that big a deal to get radiated on both sides of the neck. Everyone being treated gets some to both sides. I just got a bit more. Finished treatment on May 12th.

I found the tonsillectomy to be more painful than the radiation and chemo. Also, the stir-crazy part became less significant as the treatments made me feel worse. (Too much info - sorry).

Read everything you can, on this site. I found that my questions were answered before I even knew they were questions. You can get through this.

Deb

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Welcome to our family.
You've already got some things done, as did a number of others, so it's begun for you. This is good- you've already hit the C with a couple of good punches. And that is the way to think, Tony- focus, above all else, on the single facts that you will survive this, and the life after will be entirely acceptable. Trust me- and everybody else on this forum- that you will come to know this as fact.

You mention Radiation, but not Chemo. If you don't get the Chemo, also, then it will not be nearly as bad as if you'd gotten both. Worst of times, for me, were the two weeks after each time I got the Chemo. That said- you still gotta gear-up, Tony, and get prepared to fight your best fight, with the help of Denise and all others close to you, and your Drs. This is 2010, and the state of H&N in the medical community is not what it used to be. Be very open with your Onco/Rad Dr., and/or maybe your regular Dr. about how you're handling this. H&N C throws all protocol out the window when it comes to the meds to help you get thru it. Your Drs. will provide help with the physical negatives you experience along the way- but you gotta keep them in the loop as to how you're doing. You'll be okay.

As for the PEG- had mine for 15+-months, and used exclusively for 7 weeks of my 8-week treatment. They seem worse than they are. Outpatient Op. for me, and I came to know mine as a very-okay thing to have. Can be a bit of a nuissance, but not a big deal.

Keep us informed, Tony- we are all here to help.

Believe

kcass

pattyanny's picture
pattyanny
Posts: 523
Joined: Jul 2009

Welcome (unfortunately) to our CSN family. I had both sides radiated, plus chemo. Looking back, I should have gotten the feeding tube. So many factors enter into being able to get nutrition, so the feeding tube is a must. I am still struggling to gain the 30 lbs I lost.
I used Aquafor for burns (near the end and silvadene (sp) I took anything I could to get thru when it came to pain medication. Be honest with your Drs about your discomfort level. You should do quite well, especially having a supportive wife.
I, myself did not wish to "get ahead of myself" by reading too many posts. I did not want to put negative effects in my head. As things progressed, I searched for answers, and boy, oh boy did everyone come to my aid here. This is THE place to be for info, support, and friendship.
One step at a time, keep copies of all reports & records, and stay positive.
You can do this! Prayers, Patty

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Tony,
I too am sorry that you find yourself with a diagnosis that resulted in you finding all of us. But find us, you did, and that is a good thing. I am a caregiver, and have found these boards to be informative, strengthening, and caring. Both roles are hard, the person undergoing all the poking, proding, pricking, cutting, radiating and bombarding with chemicals; and the person on the front line caring, supporting, and learning. We caregivers are on a huge learning curve, to know this disease, the treatments, and how to best get the one we love through it.
I have found that the process is not linear, in that one does not move through it in a straight line; hence we accept, move to a new stage, accept again, move to a new stage and accept again; all the while learning as we go. People who have been out of treatment will talk of the "new normal"; an acceptance of the outcome, the long lasting side affects, and the wiser, better person everyone seems to feel they have become.
To ask what comes next is a wild card. Everyone has their own story that helps you develop and understanding of the big picture; and then you will have your own journey that is unique to you.
You have already recieved good advice from this post. Ask questions...folks here know. Suggest your wife read and then get on board. No one can do this alone...no one.
Stay connected, you will get through.
Kim

Fire34
Posts: 353
Joined: Feb 2010

Tony & Denise
I had both sides of my neck with radiation. I was an unknown primary with HPV+. I believe that the unknown was why they did both sides. Just to make sure
Once treatment starts a positive attitude is a must, I myself felt like quitting the third week of rads( twice daily) if not for my very supportive wife. She made me see the light at the end of the tunnel.
As been mentioned before I would look up swallowing exercises and start on them before treatment begins, just to keep those muscles active. Ports & PEGs have been mentioned I would not have been able to get thru without mine, especially the port.
Best Wishes & Prayers as you both start this journey
Dave

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

... "We never realized how prevalent this disease (cancer)was."
Yes, cancer is prevalent, and our cancer is not terribly exotic, but it's still obscure enough that unless you have it or know someone who does, chances are you never heard of it.
When I tell even well-informed, educated people that I had tonsil cancer, the inevitable reply is, "Tonsil cancer? Never heard of it!"
The way I look at it, I'm a member of an exclusive club.
So, welcome to the club -- though I'm sorry you've joined.
Keep hanging out here. This is a good place.

--Jim in Delaware

tonyanddenise's picture
tonyanddenise
Posts: 70
Joined: Jun 2010

once again I am amazed at the level of support , kindness and understanding in your community here. Thank you for welcoming us. Met with the medical oncologist yesterday. Received a lot of info.My cancer is stage 4a. I guess that is not very good, or on the flip everything else was level 5. mother in law just walked in heres the quick run down. port scheduled , peg yes.
does anyone know about erbitux? 2 hr drip once a week for 7-8 weeks? combined with neck rad. on both sides? start july 9. soon as neck heals a bit.

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Hang on for the ride....

I didn't have Erbitux, my cocktails were nine weeks of Cisplaten, Taxotere and 5FU, then a schedule similar to yours with Carboplaten, daily rads and Amifostine injections for seven weeks.

STG III SCC Tonsil Cancer HPV+....

I didn't have the PEG, did have the tonsillectomy, but no dissection and loss no teeth.

It's a very doable treatment that you will be on, but that doesn't mean it's not a rough one. Most everyone here has went through it or going through it, you will also. A lot has to do with health going in, genetics, faith and a positive attitude...that being a biggie.

Good Luck & God Bless,
John

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Glad you've got the next round mapped out. I felt much better when I had an action plan. I did not have erbitux (I had the same drugs as Skiffin), but several people here have.

Hoping you do well in treatment.
- Pam

friend of Bill
Posts: 87
Joined: Mar 2010

Welcome! Radiation is rough but you can do it! At a couple of points my oncologist gave me a week off b/c I was really struggling psychologically and physically. That helped. I wanted to bail out a time or two - everyone listened, encouraged me and I went on. It feels at times that there is no end in sight but hang in there. It's worth it. Many questions will arise, so use these experts - someone here will have figured out a way and will generously give you their wisdom. Wish I had known about this forum at the time. My best to you and your wife. I know how hard it is for you.

Vince

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

Radiation wasn't the worse part of my treatment. They started out with 14 points of radiation. I developed a very deep tan, but I never burned. The tan skin just fell off when I was applying lotion and the skin underneath was very healty. At the beginning I was a bit stir crazy also. I set small daily goals for myself. As treatments progress the process of daily living will be very consuming. I did get a feeding tube. With the tube I still lost 14 pounds that I really didn't have to lose in the first place. I really don't like it, but I know that it is necessary. I finished my last treatment on June 8, 2010 and am feeling better everyday. This site is wonderful. It feels good to be able to relate to people who are living the same thing.

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

JudyV5, this is the first post I have seen from you and I apologize if you posted before and I did not see you. I want to welcome you to the boards, and also congratulate you on finishing treatment. Please let us know about you, and your recovery process. Every day people are entering that phase and it is so helpful to know from others what that is like and what might be expected.
My best to you and all that are on these boards,
Kim

Fire34
Posts: 353
Joined: Feb 2010

Tony & Denise
I had Erbitux once weekly for 18 weeks I was part of a clinical trial at U of Chicago. The only thing that was of any concern with Erbitux was the rash. Mine got pretty bad but was given meds to help control it somewhat.As has been said before by others, the worst the rash the better it is working. Mine itched like heck and it was extremely hard not too, they were of course afraid of infection from that.
I aslo had Carboplatin, and Taxol during induction chemo. Then during radiation had 5FU and hydroxyurea. Keep up a positive attitude as my wife and I were just as startled at my diagnosis. Best Wshes & Prayers
Dave

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

JUDYV5, welcome to CSN. I'm sorry you need to be here but glad you found the site.
CONGRATS on finishing your trmnts!!! That is fantastic. Also very good news that you didn't burn from the rad. That is a real blessing. Please keep us posted on your progress.
God Bless you,
debbie

tonyanddenise's picture
tonyanddenise
Posts: 70
Joined: Jun 2010

welcome! I am new too. The people here are wonderful. It is such a great help to have folks that truly know whats going on and personally experienced the trials . I am becoming a regular reader and occasional poster. Good to hear you are doing well!

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

Hey, Unfortunately my friend sounds we both ended joining the same fraternity; I am also a Stage IVa: Tonsil Cancer T2n2M0. I was diagnosed Mar 29th, Had Neck resection having 38 nodes removed but only 1 was( the original) positive. I am just about to finish 1/33 radiation treatments TX and have my last dose of chemo this week as well. 3 Cisplatin: 1 every 3 weeks. Needless to say TX sucked. I'm a military guy and it pretty much feels I'm a POW in a Torcher camp. Let me know if u have any questions. I've found this board helpful; I just try to stay away from the negative posts; at this point all I want is positive energy! Good Luck!!!!

Charles

P.S. I hope you got the PEG!

tonyanddenise's picture
tonyanddenise
Posts: 70
Joined: Jun 2010

I am an ex corpsman, genuine camo wearin field med. jarhead.
I try not to post negative, sometimes gets to me though. I have been reading your stuff to. Sounds very close to my issues. I am glad to see you doing well, aside from my obvious concerns! I hope you are up and back to somewhat normal soon. Nice tan by the way!

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Special KUDOS for you....Marines always consider Corpsman special and in high regards.....prior Marine Sargeant myself.

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