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angelinohio's picture
angelinohio
Posts: 4
Joined: Oct 2010

Looks like I finally found a good place. My husband Doug was diagnosed with T1 N2 Stage4 HPV Type Squamish Cell Carcinoma of the left tonsil, with large left side tumor mass and invading lymph nodes We have already done the biopsies, have opted out of neck dissection and should be starting radiation-chemotherapy within the next month. I'm scared to death, can he survive this, just how awful will THIS become? He is a big strong guy who runs 5 miles everyday and never even takes so much as an aspirin. I don't know how to keep it together for him, any help? PLEASE.

Noellesmom
Posts: 1397
Joined: Aug 2010

Angel,

You have come to a good place where you will find many others who will be glad to help you through this.

There are many people who will be posting. Read through some of what is posted here and don't forget to go to the Caregivers postings you will find here, also. There is strength there for you in this fight.

Ask specific questions when you have them and you will get answers.

You are not alone, Angel.

RushFan's picture
RushFan
Posts: 219
Joined: Aug 2010

I'm sorry you have found this group...but what a great group you have found.

I completed my treatments almost seven months ago for stage4 SCC (unknown primary, HPV+) T0,N2b. After removal of a single "suspicious" lymphnode, I had 35 IMRT radiation treatments to both sides of my neck and seven once weekly chemo (cisplatin) infusions.

Doug can survive this! The treatments stink, but with a possitive attitude and support, you both can fight this beast and win! I'm very fortunate that I had loads of support from my wife, family, friends and work associates. I've been back at work full time now for the past three months. I'm not 100% yet, but working on it!

I suggest that you scour the subjects and posts on this message board and post as many questions as you want...there are some really super people here...patients and caregivers who will bouy you up and offer loads of great info.

Best to you, your husband and all here.
Chuck.

Army_Guy's picture
Army_Guy
Posts: 53
Joined: Oct 2010

Hi Angel,

This is the right place. I had a stage 3 squamous cell HPV+ 4cm tumor at the base of my tongue. I had radiation therapy twice daily and chemo infusion (Cisplatin) once a week for six weeks (June 28 to Aug 12th....with a one week break). My tumor disappeared in July and a follow up visit last week including an Endoscope check confirmed it's still gone. I am about 9 weeks out of treatment and eating (had feeding tube removed Sep 28th) 3 squares a day, the fatigue is diminishing and I am back to work on a modified schedule. My mantra through treatmeent was (and still is):JHLD - Joy, Hope, Love and Determination. This coupled with the loving, caring support of my wife, family, friends and colleagues helped me get through this and they still are extremely suppoortive. View this discussion group as sort of an extended family...there is plenty of support on this site. Your husband will get through this if he stays determined. It isn't an easy roadd to travel, the temporary side effects stink but the reward is beating cancer and extending his life. Both of you: STAY STRONG and don't be afraid to post questions or concerns. Someone will provide a positive answer.

Dave

Kent Cass's picture
Kent Cass
Posts: 1756
Joined: Nov 2009

You state that you've opted out of the neck dissection. I hope your Drs. are okay with this. Many, here, have had the dissections. I have not- I'm NPC with two tumors on the left side of my neck. The somewhat radical Cisplatin delivery, along with the rads, seem to have aced the tumors/C, and my last rad was in 4/09. So, the C&R do a good job, but your Drs. would know best about the dissection issue.

As for his survival- yes, he can. If he really is tough, then don't worry about him being able to handle it. I would strongly advise him to get real, though. He's not dealing with a co-worker, or a couple punks on the street. He's dealing with D, angel. If he really is tough, then he'll allow the Drs. to do whatever they deem necessary, because he's tough enough to take it. Rule of thumb is for the Drs. to error on the side of aggressive treatment. Make certain he gets Cisplatin as his Chemo med, preferably with an FU5 infusion.
Just around the bend is the time for him to roll-up his shirtsleeves. All of us, here, have been up around that bend, and ain't a one of us sorry we fought the battle, because we've all won it- just as your husband will. As man, angel, I can honestly say that all I really needed was to know I would survive it, as I did, with the help of the Lord, and my will to survive. That one little thought- I will survive this- is the Positive foundation upon which one forms the defense. There's a lot else, of course, such as Nutrition, pain management, etc., that goes into it, but if one knows he/she will survive it- then all else becomes secondary issues. Yes, H&N can get ugly, but the body does recover well. And, this is 2010, so take solace in that Doug has found a better time to join us than was the case not so long ago. The chances of surviving H&N C, now, are over 90%- he will survive.

As for you- Kim is the Authority for you to trust. I would urge you to converse with her by PM, if need be down the road, as she has been down a road not so far away from where you will find yourself.

kcass

Pam M's picture
Pam M
Posts: 2193
Joined: Nov 2009

You did indeed find a good place. Your hubby can certainly survive this; some times may be rough, but the treatment is doable. both of you need to prepare yourselves for some hard work; folks here will help with providing support and info - I can't tell you how helpful this group was when I was going through treatment (and after, too). We've got some great folks here. Good to hear hubby is a big strong guy. That, along with having a good support base will really act in his favor. He can accomplish a lot with his strength, your support, and determination. Add the medical support team into the mix, and things are looking even better. Of course you're scared - it's only normal; even when you know he can get through this.

I find that I feel more in control when I'm doing something. Now is a good time to get your ducks in a row (if you haven't already) - get a binder, and start tracking/collecting info. You can set up tab dividers for things like test results, tracking meds taken/side effects experienced, info on new contacts, recipes or notes on foods that are/are not tolerated. If hubby can listen to CDs during radiation treatments, figure out what music you'd like to collect for him. If you have other folks offering to help, let them know you will take them up on the offer - you may have plenty of work on your hands just seeing to his needs. Ask tons of questions (here, and at the doctors'). If you can, take another person to his appointments, someone who can be a little removed, someone who can take good notes.

Don't let me frighten you. I was stage four with lymph nodes involved, and made it through treatment without a caregiver - chances are, even though he'll need you, he won't be totally dependent. Do well. Keep us updated. Ask questions.

angelinohio's picture
angelinohio
Posts: 4
Joined: Oct 2010

What a great group here, thank you all so very much.

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

Fellow caregiver here. You and he can do this. Like others have said, it's not going to be easy and there are no guarantees, but you will get through it. It doesn't seem like it now, but once you get in the middle of it there is so much going on you will be coming out the other side before you know it.

It can be overwhelming and scary and he may be grumpy, ungrateful and distant - but that's not him - it is the treatment and what he is going through. Take it one day at a time, one side affect at a time, one treatment at a time.

((Hugs)) to you and praying for strength for you both in the coming weeks.

Scambuster's picture
Scambuster
Posts: 973
Joined: Nov 2009

Hi Angel,

Yes he can beat it. The going may get rough between now and then. I am 1 yr 1 month of a very similar Dx.

I have info on my 'Expressions' page re diet and nutrition (Vitamins and supplements) which I think is paramount to winning this fight so if interested, check out the info there and the few blog articles.

Scam.

luv2cut1's picture
luv2cut1
Posts: 288
Joined: Oct 2010

Hi Angel,

I am a caregiver as well. My husband had T2NOMO SCC of the epiglottis originally diagnosed in May 2008. Went through chemo/radiation. March 09 had a lump on right side of neck, positive for SCC 4 lymph nodes. Doctors actually think it was a miss with treatment the first time. Had radical neck dissection and chemo/reirradiation. It was brutal. He is very much like your husband - active and tough and rarely takes medication. He went through the treatment without a feeding tube and, while he lost some weight, he actually did pretty well. He absolutely had to force himself to eat (soft foods only) and drink Ensure. There are times when we thought we could just not go on through the treatment, but with determination, he did it. I am happy to say that he is now 14 months out from his last treatment. PET scans so far have been NED for head and neck cancer (he has CLL as well - watch & wait). He is doing great - no medication, eats normally and works just like he did before. He has been working a brutal schedule of 12 hrs/day 7 days/wk for the last three months and while it wears him out, he is doing fine. He is an electrical contractor so the work is very physical.

It is hard to watch someone go through that kind of treatment. I hope your husband's will not be as brutal. Be patient with him and know that this too shall pass. It is definitely worth it in the end! My husband has next PET in November. We are hoping and praying for a good result.

Good Luck and know that the people on this board are some of the most helpful, positive, supportive people around.

Take care,
Myka

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

I am 5 months post treatement for scc of the hypopharynx. The battle that your husband has to face is tough. but it is doable. The ent decided against neck dissection for me when he determined that he could not remove the orginal tumor with causing to much damage.
The chemo and radiation elimated the cancer, and I have gotten a couple No Evidence of the Disease diagnosis. Your family will be in my prayers.

fisrpotpe's picture
fisrpotpe
Posts: 1345
Joined: Aug 2010

Your at the right place, I sure wish when I was young at 38 14 years ago I would have had a place to go like this.

I believe that having and maintaing a Positive Mental Attitude is approx. 80% of whipping this ugly sickness. Believe you will the fight and you will win. Keep your faith as God is always there for you no matter what your past was. Never, Never, Never give up. Last give up your pride and accept help, for man it is the hardest for them to do at this point.

Keep you smile and positive attitude, listen and do as much as you can.

Happy to see you reaching out now and please continue as neither he nor you can do this war by your selfs.

John

forme's picture
forme
Posts: 1161
Joined: Aug 2010

Hi Angel,
I just wanted to add my welcome to you and your husband. I am a 2 time survivor and now have 2 different cancers to fight. I am also a caregiver to my mom and soon to my mom in law. Tough days ahead, emotions will be all over the place, but you both can do this.
Peaceful healing always
Lisha

Skiffin16's picture
Skiffin16
Posts: 8208
Joined: Sep 2009

Hi Angel, you both will do what you have to do to get through it....not easy, and definitely a rough diet, but doable.

Myself and many others have all been in the place he and you are in now...you have to start somewhere.

I also had Right tonsil, SCC STG III HPV+ and a lymph node involved also. That was Jan09, got the tonsils out, port installed, no PEG, and started with nine weeks of chemo in three week cycles. Cisplatin, Taxotere, and 5FU which was in a pump 24/7 for a few days each cycle.

All of that followed with seven weeks of concurrent chemo (Carboplatin) and daily Eythol (Amifostine Injections) and daily rads for 35 days.

Finishing up that around mid June09...all clear to date, hoping to continue to say that well into the future.

BTW, my tumor dissolved away around the end of the third cycle, hoping his will as well.

Where in Ohio, I just got back from visiting relatives in Cleveland, Mansfield, and Mt. Vernon.

Best,
John

luv4lacrosse's picture
luv4lacrosse
Posts: 1412
Joined: Jul 2010

Hi, I am one week post Chemo and Radiation. My side effects are probably as bad now as they have ever been. I too "was" a big guy, I used to compete in Powerlifting, played Ice Hockey and Lacrosse. I started my journey at almost 240 lbs and weighed in yesterday at 180.9 lbs. I went ahead and had the PEG inserted just about one month ago as there was no way with my throat issues I was going to ingest 2500 -3000 calories per day. Trust me, if you need it, get it. I played the big tough guy and that caused me to delay the PEG by a month or two.
I was diagnosed with Right Tonsil as primary with Mets to 19 Nodes. I also had some soft palate invasion. My surgeon performed 2 surgeries on me and felt confident he got clean margins everywhere he removed tissue. I then did 30 Rads to both sides of my neck and 3 Cisplatins. I will not lie, all of my treatment was an asskicker, and my side effects are more severe and will last for a longer amount of time. Take your day one day at a time, and when you feel down, which you will on some days, check into this site and just vent for awhile.

YOU WILL DO THIS!!

MIKE

angelinohio's picture
angelinohio
Posts: 4
Joined: Oct 2010

I wrote this in an email to a member here, since I am so overwhelmed at the moment I'd thought I'd just SHARE.
I thank EVERYONE for the kind words.
Cheryl~

Dear Chris,
OMG I couldn't have read your message at a better time. I swear I'm going crazy on a downward spiral and don't know how to fix this. Monday, my husband Doug had surgery for his feeding tube and med port. You can't believe what I went through just to get him to agree with it. When we left the hospital and returned home before he even got to the front door he passed out. Now it wasn't just any passing out; to ME I swore that my husband was dying right before my eyes and there wasn't a thing I could do. His eyes were wide open, his body rigid and I couldn't see him breathing. Thank god by the time the EMT's arrived as he was gaining consciousness and the big giant man of coursed refused to go back to the hospital.It was THE MOST FRIGHTENING experience in my life!
Yesterday he was doing really well, and told me he wanted me to drive him to work for a couple of hours today, he has been so stubborn about everything I agreed to take him.
This morning when he didn't wake me to take him I knew something was off, so he admitted that he didn't go to the office because he felt woozy, it was there that I made what it seems another mistake in a line of many. I told him if he was woozy he shouldn't be climbing the basement steps back and forth to work on his computer down there.
It turned into a huge fight!
To put it that Doug is a big strong proud man is putting it mildly, and I know I have to let him handle HIS Cancer the best way he knows how, but how do I love him and protect him without fighting him every step.
There are many people that love us but I have No One to talk to about this. He needs to fight his cancer- not ME!, yet I can't seem to keep my mouth shut and let HIM do what HE WANTS TO DO, even if it hurts him.
What am I going to do, treatments haven't even started yet?
I can't thank you enough, a stranger listening, you are to kind. Below is our website on Caring Bridge. If you'd like to read our story and read through the journal, it might give you more insight to who we are.

Cheryl Shanteau
http://www.caringbridge.org/visit/dshanteau

Noellesmom
Posts: 1397
Joined: Aug 2010

Doing anything wrong.

This is a tough fight and some people have a harder time of it than others.

Please remember that it could be just the procedures he underwent that caused a problem and you may have a calmer experience from here on in.

It IS overwhelming. It IS frustrating to try to get someone you love to do the best thing for themselves.

It IS important you let him fight this fight.

Hugs to you. I know you need them right now.

Keep coming back here. There are plenty of experienced people on this board.

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