| Joined: Jul 2014 Posts: 29 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2014 Posts: 29 | 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" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 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 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2014 Posts: 29 | 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!  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) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | 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 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | 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 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | 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: 247 Likes: 1 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2008 Posts: 247 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) | "OCF across the pond" Supporting Member (50+ posts) Joined: Jun 2014 Posts: 56 |
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) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 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 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!
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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