Previous Thread
Next Thread
Print Thread
Joined: Mar 2016
Posts: 2
lat Offline OP
Member
OP Offline
Member

Joined: Mar 2016
Posts: 2
My husband was diagnosed about a 15 months ago with STage 4, HPV, oral cancer, base of tongue and lymph nodes. He went through a month of triple chemo and then 7 weeks of brutal radiation. He did eventually get a PEG tube but otherwise did so incredibly well. I should note that he was in great shape before the treatments which I'm sure helped. He had very little nausea or stomach upset. His throat was uncomfortable but nothing like the nightmares I have read on this board and others. He didn't even use any pain meds. He never stopped being able to swallow or take in water but just couldn't eat because things "tasted too weird."

He is now eating pretty normally though his taste buds have not all returned. He has less saliva but doesn t even need medication anymore. He lost about 20 lbs which have stayed off but hes at a good weight. Hes back to exercising and his other healthy habits. He has had 2 ct scans so far every 3 months both negative. He otherwise seems completed 100% back to normal.

However, as a nurse, I know the odds. I feel like I am holding my breath. I read these boards when he was first diagnosed and had to stop because the fear of what might happen was causing such anxiety I couldn't function and I am the only breadwinner. Now I'm back for two reasons. I guess I want to know what the oncologists wont really talk about. Does anyone get through this disease 100% cured with no reoccurrence? I couldn't find any literature on this. I'm supposing that if people were cancer free they might not be posting here anymore. Any ways I am an anxious mess again not knowing what to expect...when will the shoe drop? Does anyone have any good reports?

Also my 82 yr old mom was just diagnosed yesterday with tonsil cancer. We are awaiting final diagnosis but her's is probably from smoking. She smoked for about 40 yrs but quit cold turkey...looks like this evil is coming back to haunt her. I know my mom will choose not to do any treatment so that also has me scared to death. I'm so stressed for both my mom and husband. Thanks for reading my post.

Joined: Jul 2011
Posts: 945
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Jul 2011
Posts: 945
Hi, Lat -
Try googling: oropharyngeal cancer HPV alternate staging

The old-style staging is being revisited by some of the top researchers for HPV associated cancer. There is a recent paper by Dahlstrom you should be able to find that will probably make you feel better about your husband's prognosis though nobody can say 100% cured. Maybe you can dial down the fret level.

I'm sorry to hear about your mom - that is a tough diagnosis at 82. Even if you pretty sure she will refuse treatment, it wouldn't hurt to look into some of the immunotheray clinical trials.

Best wishes and don't be like me and get a massive RA flare from all the caregiving stress!
Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Welcome to OCF! You certainly have your hands full! No wonder you are stressed out about this, I cant imagine how hard it is to have 2 of your closest relatives have this horrible disease.

Most patients will get thru their OC treatments (some easier than others) move thru their recovery phase and go on to live happy, health long lives. Having a recurrance is not as common as you may think. After going thru such brutal treatments many patients (or caregivers) get anxious around scan times. This is completely normal to fear the worst after such a life changing event. Many patients and caregivers take anxiety meds to help them manage their fears. Talking with a therapist can do wonders to make it easier to handle.

Being a nurse you can probably have conversations with oncologists on a deeper level than the average patient or caregiver. Next time your husband goes for a check up, try asking the oncologist about these things. Im sure they can relate to you better than someone without a medical background.

Im very sorry to hear about your mother's diagnosis! Its extremely rare hearing about 2 members of a family having OC. Since your mother quit smoking, she is taking a positive step for her future. Her decision might just surprise you. I know treatments are not easy but some do get thru it easier than others. Ive noticed those who sail right thru are the ones who focus on their intake and have very minimal weight loss.

Being a caregiver is a tough job!!! Be kind to yourself and find some way to relax and get your mind off worrying, even if its just for a couple hours. It will help you manage all of this a little easier.

Best wishes!



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Jul 2009
Posts: 1,406
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,406
Hi lat - congratulations to you and your husband for getting through the very tough treatment that so often comes along with any head and neck cancer diagnosis. As I've been told, and can attest to personally, being HPV+ is an advantage with this disease (versus the older and more traditional smoking-caused cancer). When I finished treatment nearly 7 years ago and asked my RO whether I was now in remission, she responded, "Oh no, you're cured."

So it is indeed possible. And although there's always a tiny voice in the back of one's mind reminding one of possibilties (nothing's ever 100% in life as we all know), I've basically stopped worrying about a recurrence.

I recommend reading some of the survivors' stories on the appropriate forum.

My thoughts are with you all, and especially with your mother. I know this must be very difficult for you and for her. Please keep us posted, and ask any questions that come up. We're here to help.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
The odds are in your husbands favor! HPV positivity is the best prognostic measure we have so far in regards to head and neck cancer survival, as was mentioned. There are articles on this. Just recently, one small study about scanning and physical exams finding most HPV positive oropharyngeal cancer, and general times to recurrence.

Most of these recurrences were detected by either persistent disease appearing on 3 month post treatment imaging or by patients presenting with symptoms at follow-up visits. I can attest to that since I found all my recurrences, except one, by self palpitation, which were confirmed by imaging, biopsy. The other, was only found by imaging, due to the pec flap.

In this article, which are similar to others I've read, within 3 years, local control was 97.8% of all patients, regional control in 95.3%, locoregional control in 94%, and freedom from distant metastases was 91%. Even this article mentions "high cure rates", which term I heard used many times before.

I wish the best for your mother!

http://oralcancernews.org/wp/imagin...es-of-hpv-positive-oropharyngeal-cancer/


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 2014
Posts: 23
MAK Offline
Member
Offline
Member

Joined: Oct 2014
Posts: 23
Hi there. My husband also was diagnosed with Stage 4 oral cancer, base of tongue with lymph nodes, so I think I understand your concern. My husband was diagnosed about 20 months ago and was treated with surgery and radiation, but no chemo. That scares me a bit, but so far so good. I have to force myself to say "today he is fine" and to go with that mantra. I too find this site very helpful, but also a bit scary although I can't seem to pull myself away from reading it routinely. I enjoyed reading the responses to your post from folks who have been dealing with this for a long time. Good luck to you and your husband, and your mother. And it sounds like a cliche, but take care of yourself!


Maura
Working caregiver of husband Don ,56yrs, non smoker, casual drinker
6/14 DX squamous cell carcinoma on base of tongue, HPV positive
8/28 Radical neck dissection w/ removal of 31 lymph nodes and partial pharyngectomy T2 w/ MET to lymph node
8/30 emergency surgery to cauterize bleeders in throat
10/1 Began 1st of 30 tomotherapy
11/14 end of radiation
Joined: May 2008
Posts: 551
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2008
Posts: 551
I was diagnosed in 2008, non-HPV and no recurrence. I am considered cured. Yes, there are some pesky side-effects; have recently started experience muscle cramping in my neck, have reduced saliva and ongoing non-cancerous sores on what's left of my tongue, but these are really minor concerns.

The first few years, when you're really waiting for bad news are tough. Really tough. But yes, some of us do survive.


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5