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We are starting our journey to recovery

tgcap's picture
tgcap
Posts: 12
Joined: Aug 2013

We were enjoying life when it turned on us with a diagnoses of scc tonsil hbv T2N2bMO. First I am having trouble getting over my husband being missed dx for at least 6m and 3 docs and a CT. Just sore throat doing its job! I guess that is the angry part of this nasty C. Fortunately God put a great ENT in our lives two weeks ago. Now we are on sch for beginning Tuesday for Chem then rad at MD Anderson in Houston. Time frame is mid Dec. 

i started reading this forum last night. First it scared me then I began to see hope courage and strength. We have lots of family but it really boils down to the two of us. I must be strong, courageous, gentle, and positive as he has been with me for 35 years. The term Caregiver and partner has taken on a new meaning. God has set us on a path and we take it knowing he is with us every step .

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

You have found a great site, and awesome people......

Don't be afraid to ask anything, we have all walked your path in one way or another. More than likely anything you can think of or your hubby experiences, one of us if not more have alreay gone through it...

I too was STGIII SCC Right Tonsil, and a lymphnode, HPV+... That was Dx in January 2009, sixteen weeks, four chemos, seven of which were concurrent with rads, ending in June 2009... All clear since...

As for being miss Dx, I wouldn't necessarily agree, as myself and others went through the exact same scenario..., maybe a bit shorter... It took a good three months for them to go through the regular antibiotic route, with no results before referring me to also an awesome ENT. He recognized and Dx me basically the same day, just confirmed it with a CT, then biopsy when he took the tonsils out three days later.

Not sure of your hubby's background, but for me it was a complete surpise (shock), and no thoughts or suspect of my throat irritation being cancer. Never smoked, no alcohol abuse or family history..., HPV, the new big H&N Cancer contributor in men and woman in their 40 - 60 ages.

As a side note, check out the SuperThread (first on this forum), it has tons of great info...

Best,

John

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

Hi tgcap,

Sorry you found us but it's good you did as well. This is a great site for info, support and encouragement as you begin your battle with the beast. You're in good hands at MD Anderson as they're the top rated comprehensive cancer center in the US.  I was Dx'd - Tx (unknown primary) N2b, MO Stage IV. Treated at Johns Hopkins, 30 rads 6 chemos, finished 4-24-13. Doing well. 1st post PET NED :) 

I won't sugar coat it... Treatment is brutal but you'll both make it. Follow the advice of your team. Do the best you can to keep your husband hydrated and nourished and be sure to take care of yourself as well! Manage the side effects before they show themselves (nausea and pain) and pick our brains for advice and tips to get through this. Start prepping his neck with a cream now before the rads start. There are many that are good. I used 'Special Care Cream" throughout several times a day (NOT BEFORE A RAD TREATMENT) and had very minimal burning and peeling. 

Positive thoughts and prayers

"T"

tgcap's picture
tgcap
Posts: 12
Joined: Aug 2013

Thk u

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

I've walked your path, I'm now six months out of treatment (SCC BOT S4 N2C HPV+).  I also went though the MD Anderson protocol, 3 rounds of Induction Chemo followed Eributux and Rads though at Baylor in Dallas.  My family Doc also missed my diagnosis (thought it was strep) by six months so don't feel like the lone ranger.  The bad news is the treatment is not a walk in the park.  The good news is it is very doable and, with the help of this group, your husband will come through it.  The VERY good news is our disease has an exceptionally high cure rate especially using the MDA protocol.

Any questions feel free to ask, there is an amazing wealth of knowledge here.  If you would like to ask anything of me on the MDA protocol feel free to send me a private message.

Good luck to you and your husband.

Joe Cortney

Dallas, TX

longtermsurvivor's picture
longtermsurvivor
Posts: 1755
Joined: Mar 2010

It sounds like you have a good plan.  Now is time to hunker down and just plough through the treatments.  One day at a time.  All of us have been there.  Some of us more than once.  As John said, the delay in diagnosis is a pretty ordinary situation, many here have had those types of delays.   Keep the faith, both of you.  Welcome to the board.

 

Pat

 

phrannie51's picture
phrannie51
Posts: 3594
Joined: Mar 2012

As John said, you have found the best...most supportive forum on the internet.  Lots of tricks and tips up our sleeves for getting through treatment (things the Dr.s....who have never been through treatment....don't think about).  This place has become second family to me, as they held my hand all during treatment and after, with encouragement, shared delight....and laughter, too.

Read the top thread in this forum....Super Thread....lots of ideas there for what you might need to start treatment....lotions and potions for his neck.....food ideas for when things get dicey once rads start.....Ask your Onc about Mugard to avoid mouth sores (worked for many of us).....

Most all of us had a delay between the first time we went to the Dr. and finally getting a diagnosis...and another delay getting treatment started.....that's pretty par for the course. 

You and your hubby are going to get through this.....a mile or two on gravel in this road of life.....and then back to pavement....

Keep close to this board, ask anything you want, somebody here will know something about your questions....and you don't have to wait very long for an answer.

p

 

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

tgcap,

Welcome to the H&N forum, no delays from here forward (bold statement)

I did not have any delays in diagnosis, treatments that is a different story.  As mentioned you have a good team, a good medical facility and good family.  While you might not think so, it will be over before you know it and you can get on to living life.  We are ready for any questions, all heavy hitters have already introduced themselves.

Best of luck, enjoy eating all your favorite foods and start gathering your preparations you should have (superthrread)

Matt

TracyLynn72's picture
TracyLynn72
Posts: 634
Joined: May 2013

I'm sorry you're here, but also glad you found this group!!  These people are huge inspirations for me and are truly what got me through my treatments.  God led me to this site and I found nothing but encouragement and answers to questions that I couldn't get from medical staff.  Wishing you both the best as patient and caregiver and I will certainly add you to my prayer list!  

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

I'm not one  of the "heavy hitters" on this board but I can vouch for them , and they are the best ! You could not have found a better place to be if you are having to go through Head and Neck treatments . I have been to MD Anderson Houston and it's a great place if you have to be there . Probably the best in my humble opinon . If I can answer any questions about MDA feel free to ask away or private message me on here . Do you live close or will you need a place to stay ? My best to you and your husband . Peggy

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Hey..., I've been riding my bike, watching what I eat, etc......, LOL...

Hummingbird3's picture
Hummingbird3
Posts: 67
Joined: Aug 2013

Welcome to the ACS support family here.  I am fairly new myself and have already gained a wealth of information and very thankful for thE support and prayers.  It's good to be able to talk and share and hear from those that are going thru an experience similar to yours.  I hope your journey is short and you have an amazing team to get you through this journey at home and medically also. That is huge.  Never regret a question asked or acknowledge a fear you face...it's when we face our fear and don't embrace them that we find out how strong we really are.  

Take care,

Christie

phil. 4:13

tgcap's picture
tgcap
Posts: 12
Joined: Aug 2013

Glad my wife signed me up for this.  Starting treatment next week. Scheduled 3 rounds of chemo followed by 6 pr 7 five day per week radiation treatments.  I'm claustrophobic and get very anxious.  Any suggestions on how to handle the mask?  Appreciate any feedback.  Thanks for all the support. Great forum!!

phrannie51's picture
phrannie51
Posts: 3594
Joined: Mar 2012

during my radiation treatments.....it's a tiny little anti-anxiety pill, but it also helps with nausea from the chemo.  If they haven't already gotten you a script for it, ask the Oncologist for one.  I was really nervous the day they made my mask....I honestly didn't know if I was going to be claustropobic or not.  I wasn't when they made it...actually felt to me like a warm washcloth placed over my face.  However when it drys it's hard, and not near as comforting as a warm washcloth.  My Rad assistants cut eye holes in mine, and I'm sure that helped in not feeling so trapped.  Still....Ativan everyday about 30 minutes before rads, and I was dozing the whole 12 minutes it took to get the job done.

p

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

P is right,

When the mask hardens, it's really tight. Depending on the set up (mine had a mouth piece to hold my jaw in a specific position), it can make it feel like its hard to breathe. I used a squirt of Afrin 30 minutes prior so I could easily breathe through my nose. As mentioned, music made the time fly by! Three to four songs and I was done!

"T"

 

tgcap's picture
tgcap
Posts: 12
Joined: Aug 2013

Thanks for the feedback. I must admit that I'm still anxious but I've got some time to get my head around this.  I take Xanax from time to time.  Is there much difference between Xanax and the drug prescribed for handling the mask?  You all seem so strong in your approach and resolve in fighting this disease.  After getting through this I hope I can look back and and say the same thing for me.  I'm past the shock of hearing that I have cancer and now transitioning from dreading the treatment to realizing the treatment is my friend, there to kill this cancer.  I'm just not quite there yet.  Thanks again for all the response. 

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

I think there might be a few topics on this within the SuperThread...

But here are a few that helped me...

Xanax - I used it the frst day, it worked wonderful and got me through..., wasn't drugged at all, but sluggish later in the day. So I cut the next day in half, next day in half again. By the end of the week, I was use to the routine and no longer needed it.

Music - Bring a CD or music, most all facilities have a player that you can bring your own, or listen to theirs. The best thing with music, it gives you a reference for time.... 3-5 songs and your done for the day.

Comfy clothes - I wore a tank top, shorts and flip flops or slip off shoes... I would have to take the shirt off and they'd give me a cool sheet if needed.

Drink plenty of fluids all during treatments...

Depending on the severity of your burns, we can better advise ou down the road.

JG

TracyLynn72's picture
TracyLynn72
Posts: 634
Joined: May 2013

I closed my eyes, took deep breaths and prayed while the treatment was going on.  I prayed for my husband, kids, friends, medical staff and counted my many blessings.  I found that it got to the point that treatment ended before I was even finished.  :)  Wishing you the best! 

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

tgcap,

I was another lorazapam user (just like P51 said).  I never liked the mask, but came to find interest in what was going on around me.  I had eye holes also.so I could watch the line-up lasers.  I also listened to 60’s and 70’s rock music to soothe my soul.   My wife had the added benefit of me sleeping the afternoons away from the Lorazapam.

You will develop a routine to wearing the mask, as the rad side effects start to kick in, the mask becomes more challenging, but your techs will be right there to help you through (and we will be too).

Try not to worry and stress over what is happening, you and your team are working on a plan to rid you of this crap and then it is time to get on with life.

Best always,

Matt

Duggie88's picture
Duggie88
Posts: 515
Joined: Feb 2010

As John said, don't be afraid to ask questions chances are we can steer you in the right direction. I was diagnosed with a thorndat (no speel check) cyst and acid reflux. The reflux never got better so was sent to another ENT and was told cancer was having its way with me. They sent me to the Hospital at the University of Pennsylvania and here I am today. I've said it before and I'll say it again, doctors have a ??????? practice............. which means they are never perfect. The man upstairs is perfect, follow his lead. We can help with the obsticles.

      Jeff

jim and i's picture
jim and i
Posts: 1556
Joined: May 2011

This is the most wonderful site for cancer patients and caregivers, you couldn't get this support anywhere else. Where else could you ask a question or get support 24/7? Praying for you both.

Debbie

KTeacher
Posts: 874
Joined: Jan 2011

Welcome to our little group.  This group is very supportive and honest.  I believe that there is a discussion about the mask in the Superthread, everything that you need to know and more about the treatment that you will be going through.  Please stay in contact.  I didn't find this site until after my first treatment, evenso it has been so helpful.

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