| | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Hi, Ambra
I was hoping to hear good news from you, and now I have. I think that finding a therapist is going to do you a world of good. In the meantime, please try to get a little physical activity as that will help with your endorphin levels.
This website is tremendously helpful but it is intense at times. Take all the time you need off - we will be pulling for you and hoping for an update when the spirit moves you!
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Yeah!!! On the zit... Am ra... Good for. You for recognizing an potential issue and dealing with it. Don't let cancer do this to you... It's great at stealing joy. Hugs.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Nov 2013 Posts: 33 "OCF Canuck" Contributing Member (25+ posts) | | "OCF Canuck" Contributing Member (25+ posts)
Joined: Nov 2013 Posts: 33 | Ambra, please do stay around here. In spite of our circumstances there is much that is positive. Folks on this forum have lots to offer, and you just can't think of everything yourself. (Sort of like having a good co-writer on a paper.)
Ja 2013 tongue, red sore spot, r/r edge + white strip underneath, no pain
Al Bx on spot, strip, and vocal cords, lab rep benign
Oc 24 Surgeon follow-up, larger Bx req'd
Oc 25 Bx bits to Vanc. Cancer lab
No 14 MD said more ca investig'n req'd
No 19 Prince George CC, MRI & CT
No 20 PGCC Oncol says cancer
De 2 Vancouver Cancer Centre, PET/CT
De 31 VGH partial glossX + ex spot on vocal cords
| | | | | Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Oct 2011 Posts: 225 | With two teenage boys I never thought I'd be celebrating zits and acne! That's great news.
Ambra, I can never believe anybody gets through this situation without depression and post-trauma anxiety. My brother's whole family (wife and kids 5 to 15) is dealing in each of their own ways with the stress and anxiety of having gone through this. One of the kids called him 11 times at work the other day, so worried about him she is whenever he is out of her sight. I also feel I've forgotten how to have fun. So good girl you for seeking help - and remember we're here if you need us.
You'll be fine. XX
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
| | | | | Joined: Apr 2013 Posts: 76 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2013 Posts: 76 | Ambra--So glad it turned out to be a zit....and so great you did get it checked out. Everyone is so right; the depression is a normal response to the emotional trauma. I have been thinking about you and hoping you will soon begin to feel better physically and emotionally.
Best,
Mary
Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
| | | | | Joined: Sep 2013 Posts: 94 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Sep 2013 Posts: 94 | Hi all, Just wanted to pop back quickly and say hi to everyone and thank you for all the kindness and support. Also to wish everyone belated happy holidays! I would also like to thank everyone for the kind PMs you have been sending, and I promise to try to answer them latest this weekend. Overall, I am medium. Physically things are improving, though I am still very very tired. I had my first post treatment checkup this Monday (4 weeks post rads) and everything looked fine according to my surgeon. Emotionally, well, it is rough. I have just come back from my normal doctor, and we have both agreed that what I seem to suffer from is lots and lots of anxiety and not depression. There is a baseline of anxiety which is something I can deal with most of the times. But then there are spikes, such as this lump here from this thread, then there was spending Christmas alone, more recently some strange blisters on my tongue that turned out to be nothing, than this checkup... I got some anti anxiety meds for these episodes, and I am looking for a therapist, but still no luck. And the anxiety/stress is making me not being able to eat, and I have already lost some weight which is not good. Unfortunately being on this site seems to fuel my anxiety even more, because as soon as I read somebody's thread about something bad, my brain immediately goes to "what if" that happens to me. I feel very guilty about it, and I wish to comment to other people's threads and help others; but right now it is better for me to stay away till I get a better control of the whole anxiety thing and not freak out about everything. I hope you will forgive me for staying away for a while. Maybe once I find a therapist and/or a local support group I will be able to deal with it better. As for the sources of anxiety that I believe I was asked in a PM, there are plenty. Other than the expected cancer/recurrence fears, there is dealing with waiting for a biopsy of a thyroid tumor I have that is in 4 weeks (which lit up like Christmas tree on a PET scan), then dealing with a big financial mess the disease got me into, and worries about how capable I will be to perform at work once I am back and look for a new job in a year or so as my position is temporary. And finally, I am extremely, painfully lonely, and very anxious about staying single and childless for the rest of my life because of the whole HPV thing.
36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | I think we all certainly understand the anxiety being on the forums can cause. Take some time off, but update us as you feel you can. You won't be forgotten!!
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Hi Ambra: It's good to see you back with us. Just in the last day or two several members have been discussing this what HPV positive status does to our relationship future question. As you have likely realized, it has changed your future. Of course we are not unlimited in our options as we were before diagnosis. I too initially thought my future was rather bleak, but once I googled std dating sites I found there are many like us. Just think how many you've seen here on the forum that are HPV positive. There are way more than that out in the general population, and if my info is correct, the number is growing rapidly. Look up STDmingle and PositiveSingles, both them are .com. I'm sure there are many other sites also. Now, if this is going to stress you out maybe you need to wait until the anti-anxiety meds start working. I created a profile but decided to wait until treatment was over and life started returning to normal to pursue it further. Imagine this, I ask someone out to dinner, but have to drink Ensure because I still have mucositis or throat burns making eating solid foods impossible. That would likely be our one and only date. I am positive about what I've seen; just within 100 miles of my hometown I have found several I would at least be interested in talking too. It would be so much easier if we had no restrictions on our future, but I just couldn't play dumb about it and then possibly infect someone. I've read that knowingly infecting another with an STD is a felony, and since we have been documented as HPV positive that would be a slam dunk conviction in the legal system. This is unfortunately just one more something we will have to learn how to deal with. We've already learned how to deal with a whole host of new things, dating is just one more to add to the list. I'm positive about my dating future, I hope you can get there too. I even expect to find someone who enjoys dancing. Welcome back Ambra 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: Aug 2011 Posts: 269 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Hey Ambra! Not a day has gone by when I have not thought of you. I can relate to a few of the things you are going through. it's not been an easy recovery road for me either, physically and lately emotionally. There's an old PM from me, but noooo pressure to write back. But hopefully we not lose touch for too long of a time. Also I'm sure everyone agrees not to feel guilty about supporting people here on the forum right now. There is a season for everything, it's not your season, yours will come at another time. Take care of yourself. xo
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
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