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Joined: Jul 2014
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Joined: Jul 2014
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So tomorrow we drive a couple hours to go to hubby's first appt. The journey will officially begin. Is it normal to have my stomach feel like I just went down the biggest slope on the biggest roller coaster ever?


Husband tongue cancer 7/01/14 (forward/right half of tongue)
43 years old at diagnosis
Partial glossectomy/node removal 7/31/14
PEG tube placed
2 mos high dose radiation
2 treatments cisplatin, 3rd was cxld due to hearing issues
cancer in both lungs, stage 4, 05/18/15
chemo port to be placed on 05/21/15
Full scan on 05/21/15
Chemo, 3-4 types (names etc coming soon) for 7 mos
4th type depends on clinical trial and if placebo or not
He is planning to defy all odds and kick this cancer!

Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
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"OCF Kiwi Down Under"
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Posts: 1,024
Oh yes. I remember this.
We had to drive 2 1/2 hours to our treatment centre for our first appointment with the tumour board. Our accommodation had been booked at the Cancer Lodge just down the road.
I could not get out of the car. I just burst into tears and told Kris that we just shouldn't be there. We shouldn't be there and this should not be happening to us.
Poor guy, he got out of the car and sorted things at the reception desk. I literally felt paralysed with grief and fear.
Of course things got better. Once we knew the treatment plan I felt so much better and able to cope. I put my Caregivers hat firmly on and once again became the control freak I am.
So yes, you are completely normal. I promise you it will get better. It sure is a hell of a roller coaster , but you both will get through this.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Jul 2014
Posts: 29
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Oh thank you, I so needed to hear that! You sound a lot like me, and my Chris may actually be talking me out of the house tomorrow! Doing a lot of praying and deep breathing. I feel once I know what is going on more specifically I'll be able to handle it better. I sooooo don't do not knowing very well! Plus, I don't feel in control right now and I sooo suck at that, too! smile Going to take my unisom and get some sleep now! Thank you so very much, I actually have a little smile right now!


Husband tongue cancer 7/01/14 (forward/right half of tongue)
43 years old at diagnosis
Partial glossectomy/node removal 7/31/14
PEG tube placed
2 mos high dose radiation
2 treatments cisplatin, 3rd was cxld due to hearing issues
cancer in both lungs, stage 4, 05/18/15
chemo port to be placed on 05/21/15
Full scan on 05/21/15
Chemo, 3-4 types (names etc coming soon) for 7 mos
4th type depends on clinical trial and if placebo or not
He is planning to defy all odds and kick this cancer!

Joined: Oct 2013
Posts: 559
Likes: 1
"Above & Beyond" Member (500+ posts)
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Joined: Oct 2013
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It looks like fear of the unknown is your biggest problem. The OCF website has lots of stuff to educate you about the disease, it's treatment and getting past the fear it causes. It was written to help turn the unknown into known.

Your husband has cancer, he needs you to be strong right now. It's time to get our of fear mode and into fighting mode. Knowledge is what will lead you there.

He's been on deployments and TDY's before. You had to be strong then, this time is no different.

I know you can do this.

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Joined: Jul 2012
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Posts: 3,267
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If someone didn't have some type of fear/anxiety, I would say something is wrong, and don't really care what happens then. It's what you do with this fear that matters..fight or fight!

Good luck.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Oct 2013
Posts: 559
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"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Oct 2013
Posts: 559
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Many of us have written detailed summaries of what we went through during treatment in the Currently in Treatment forum. It will do a lot toward educating you as to what your husband will face and side effects he will encounter during treatment.

Mine is found on page 5 of that forum if you are interested, entitled Old B-52 Bombardier #2. Many other worth reading treatment threads are there also.

I hope my previous post wasn't too upsetting, but now is the time for you to be strong.

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Joined: Oct 2008
Posts: 246
Likes: 1
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Joined: Oct 2008
Posts: 246
Likes: 1
I certainly remember the horrible anxiety, inability to sleep or focus, desire to runaway together (maybe it will go away if we don't go to F/U appt, and stomach bottoming out.

Two things helped: I told MO that I had some idea about how brutal this tx was going to be. I could toughen-up if there was a chance for a cure and they were not just experimenting.

The other thing that helped, a treatment plan was put into place. That put me into battle mode and I never felt that helpless again. Even while waiting for F/U PET scans, I felt we had done the best we could.

It also helped that I was busy all the time providing care of one type or another. You become focused to cope with all that needs to be done.


CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
Joined: Jun 2014
Posts: 56
"OCF across the pond"
Supporting Member (50+ posts)
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"OCF across the pond"
Supporting Member (50+ posts)

Joined: Jun 2014
Posts: 56
Thinking of you x x x x


Mar 99 white patch tongue
Dec 11 white patch changed shape. biopsy neg
Sep 13 white patch ulcerated. Biopsy
Nov 13 diag Tongue SCC T2N2BM0 poorly Differ.
Dec 13 Hemigloss. neck dissect.Trach.Caldwell Luc (suspect cysts inside face, neg), teeth out. forearm flap, abdo graft
Feb 14 PEG tube
Feb/Mar 14. 30 x radio 60gy Grade 3 Mucositis, burns, hair loss, very ill. Nerve damage ear neck shoulder
Jun 14 *now* PEG out. Have lost 98 lbs in 1 yr. Anorexia. Dysphagia, liquids only. Dysphasia. Fatigue.
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)
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"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

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Posts: 1,024
Hello again. How did your day go?
When we were given the treatment plan the radiation oncologist specifically said
" the aim of treatment is cure" . That boyed me a lot. Yes ! This was curable. I then felt that we would and could do anything and everything to facilitate that cure.
I set about planning for everything I could think of. I fed Kris up with lots of added calories and managed to put 5 kilos on him before treatment began.
I rang the hospital weekly to ensure all appointments were booked. Chased up the Dental team for the necessary tooth extractions he needed before radiation started. Chased the surgical team for the PEG placement he had to have before they would start radiation. Not to mention the chemo team and the mask making department . Through this period we celebrated Christmas with our family and yes, it was a happy time. I knew the treatment plan was in place and that this was curable. Hang on to that.
You will both get through this.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Jul 2014
Posts: 29
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Jul 2014
Posts: 29
You guys are so amazing! I so appreciate everything y'all have said, it truly helps! I have read of what some of y'all have posted on what you've gone thru and it has given me strength. I was able, because of your sharing, to meet with his doc educated and prepared for the right questions. That itself was empowering! (Doc even asked if i had medical training! :P ) I will forever be terrified of that which i don't know-the unknown is my undoing on bad days. I have coping skills that help most of the time, but every now and then the whirling worry overcomes until i fight it back. We now have surgery planned for him and what seems a very great team taking care of him. Still much unknown but am now going to focus on what i DO know and go from there. Not entirely sure how to enter the upcoming surgery info in the signature, but will do my best! Thank you all soooooo much! Never worry about being too blunt or direct, i usually respond quite well to that! smile


Husband tongue cancer 7/01/14 (forward/right half of tongue)
43 years old at diagnosis
Partial glossectomy/node removal 7/31/14
PEG tube placed
2 mos high dose radiation
2 treatments cisplatin, 3rd was cxld due to hearing issues
cancer in both lungs, stage 4, 05/18/15
chemo port to be placed on 05/21/15
Full scan on 05/21/15
Chemo, 3-4 types (names etc coming soon) for 7 mos
4th type depends on clinical trial and if placebo or not
He is planning to defy all odds and kick this cancer!

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