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Great to hear from you. Sounds like life is moving on and still getting better and better. Always good!!
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
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Posts: 1,275
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Jay, when my husband was diagnosed and then when he started treatment, I followed your posts diligently because I found in them hope for me. Congratulations on the continued improvement.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Posts: 145
"OCF Down Under"
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It has now been over 5 months since Jen's last radiation treatment session.

Since the last update, nothing really much has changed apart from some of the sweet tastes becoming a little bit stronger, and the swelling from the lymphedema subsiding.

Still no pain or discomfort in and around the treatment area which I assume is a good sign, and speech function is probably now 90%+ of what it used to be which everyone is considering a bit of a miracle considering the extent of her surgery.

Been very fortunate with her recovering so well, and we are trying our best to focus our minds on our now 9 month old bubs, my business & just everyday life. We have our next check-up with our ENT doctors on the 28th of June, and I look forward to posting again with some good news once more in a few weeks time!

Jen, Jay & Hunter


6/8/12: Wife 33y/o with no risk dx with Stage IVa SCC L of Tongue(T4aN2bM0)
3/9/12: Induced birth @ 36 weeks - Baby Hunter!
11/9/12: OP - 3/4 Partial Gloss, Radical ND & Tongue Rec.
24/10/12: 33xRad + 7xChemo
7/12/12: Tx complete
21/3/13 & 21/6/13: NED
24/7/13: SCC in Lungs - OP: Lobectomy (VATS)
29/1/14 passed away
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Posts: 8,311
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Sounds GREAT!!!!


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Awesome best of luck


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
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Life is sounding great Jay.
So thrilled for the 3 of you.
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!
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Posts: 145
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Hi all,

Well - it has been a month and a half since my last update and I was thinking whether or not starting a new thread or keeping the updates in one spot.

I thought it might be best to continue this thread although we are technically in after-treatment phase as I thought it might be useful for people currently in treatment to see how others recover and regain portions of their life back over time.

Firstly the good news - we were given another NED last week by our ENT doctor who was very happy with how Jen has been recovering and told us that all the swelling in and around the nose cavity, throat & tongue have now settled down and it looks all clear. This is reinforced by the fact that Jen has much better speech & eating functions (she is able to have spicy food again - hooray!) and has not been any pain since treatment ended 6 months ago.

We also had our meeting with the endocrinologist for her thyroid related issues and we were told that the hypothyroidism was not caused by the radiation therapy as first assumed but was due to Hashimoto's Disease - a common thyroid related problem with females which would have occurred sooner or later but was accelerated by Jen's pregnancy.

On the other side of the spectrum, we do have some concerns over Jen's recent CT scans which showed some focal consolidation in her left lung. All three doctors we have spoken to think its either mild pneumonia or bacterial infection but have not been able to disregard it being something malignant. To make things more mysterious - Jen has shown zero symptoms apart from shortness of breath when carrying our baby around which makes things even more confusing..

Our ENT doctor has now passed this onto specialists at our treatment hospital for a final opinion and we are waiting for our next step while they figure this one out.

All in all, progress has been good but we are consistently reminded that this is a long-term fight and we will need a few more years for us to be given the all clear.

Wishing everyone all the very best in their quest to ridden the beast and I will make sure to keep you all in our prayers.

Jay, Jen & Hunter




6/8/12: Wife 33y/o with no risk dx with Stage IVa SCC L of Tongue(T4aN2bM0)
3/9/12: Induced birth @ 36 weeks - Baby Hunter!
11/9/12: OP - 3/4 Partial Gloss, Radical ND & Tongue Rec.
24/10/12: 33xRad + 7xChemo
7/12/12: Tx complete
21/3/13 & 21/6/13: NED
24/7/13: SCC in Lungs - OP: Lobectomy (VATS)
29/1/14 passed away
Joined: Dec 2010
Posts: 5,260
"OCF Canuck"
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Posts: 5,260
Fingers crossed it is only pneumonia or some other such thing... keep us on board with what is going on, and I am saying prayers for you. 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
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