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Joined: May 2013
Posts: 63
Meli Offline OP
"OCF Kiwi Down Under"
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"OCF Kiwi Down Under"
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Joined: May 2013
Posts: 63
Well I made it through treatment. Had my last radiation treatment on Tuesday 20th August and after loosing hearing in my ears only ended up having 1 of the 3 planned chemo's.

So it's now 2 weeks tomorrow since treatment finished. I'm still taking M-Eslon long-lasting morphine morning and night and Sevredol fast-acting short-term morphine several times a day for pain and to try to eat. I'm only managing weetbix (runny with lots of milk), soups, 2-min noodles (with lots of soup/water) or custard. The pain in my throat seems to be at it's worst and I'm so over eating the same things. I know it's early days but when will thing start to improve.

My saliva is already a very little bit better and even a very small part of my taste buds seem to have come back and even though it's such a small increase I'll take what I can get and I'm relishing the change.

Tried to eat mashed potato last night and it stung so much and felt like it had chilli in it (which of course it didn't).

What's next? How will my recovery proceed? I know everyone's different but please give me some hope that this won't continue for another 3 months...


2013 - 39yr old female, DX BOT SCC Stage IVA (T1N2bM0) HPV+
28 May 13 - Pharangoscopy & tongue biopsy
29 May 13 - BOT Surgery & right ND (lvls 2-5)
31 May 13 - Hemorrhage, emergency trach, critical care
BOT clr mgns, 9/67 nodes & extracapsular extension
Finished 30 rads & chemo (cisplatin) stopped after 1 round due to hearing loss
May 2015 - left supraclavicular swollen lymph node & area - CT planned 9 May
Joined: May 2013
Posts: 188
Likes: 4
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Having finished July 16 I can tell you that you will make progress but use a week as as a unit of measure. Resist the "temptation of improper expectation" which I describe as measuring daily. (I have been guilty of this because I was ahead of the curve thru treatment)You will progress and you will have setbacks. Not need pain meds and then need them. Able to eat then not able to eat. Keep trying everything! Food - you know you can't eat fried chicken but you maybe ground chicken. If you can't eat go for protein smoothies. Try a milkshake - Keep pressing the edge! If you can do a walk from porch to sidewalk do that. Work your way to a walk around the block. I hope you get the idea; we are all different but we all try to make improvements. Don't stop trying.I should have listened to my Doctor when he told me before treatment to set 12 weeks as the measure once you finish treatments. It is proving to be the wisdom I have needed to keep fighting discouragement.


Age 55 HPV 16+ SCC, BOT 050613 Stage IV
great team at OSU
Tx 6 weeks of rad started June 3
8 weeks of chemo started May 28
RTOG Phase III trial Cetuximab group.
Treatment completed 7/16/2013
PET Scan completed 10/08/13
Results discussed 10/11/13
NED - Free but am I
Next part of the journey?
1year PET 10/24/14 NED
Good reports now 10 years out.
Joined: Sep 2012
Posts: 64
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Posts: 64
I kept a daily chart of my symptoms so I'd be able to compare. Many things do improve but I'm now one year out of treatment and my taste has not improved, it seems to have gotten some what worse. I have a constant strong taste of salt that makes almost everything taste terrible, together with hypertaste, in general, along with very little saliva.

As my Docs told me, everyone has different responses but you should be aware of what the range is. They don't like to tell you that little or no recovery is one end of the spectrum.


Stage 3-4 Squamous BOT diagnosed 3/19/12
Molars removed 3/29/12
(Cisplatin) inpatient: 4/11/12-4/16/12; 5/2/12-5/9/12; 5/29/12-6/4/12
Feeding tube: 8/9/12-11/21/12
Radiation 8/10/12-8/29/12
Chemo 1X/week 8/10/12-8/22/12
Last PET/CT clear: 9/17/13
Joined: Sep 2013
Posts: 4
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Posts: 4
I am nearly two years out from my last tx (Jan 2012) I too was BOT stage III HPV+

It seemed to me like forever to get better, but it was only 2 months / 3 at the most. My pain / "feeling like I was run over a few time by a truck" was the worst right after treatments. I had terrible neck burns from the rads, a terrible reaction to the Erbitux (top awards per my Oncologist) .. smile

I remember telling my wife "I don't think I can take another day of this" ..but I did and one day, almost overnight it seemed to improve, then improve quickly it did after that. Mine was about the 8 week mark. I was on a feeding tube for 7 months, lost 70lbs in treatment (even with the tube) ...throat was terribly painful, mucus was quite bad ...(btw, my feeding tube was inserted the first week of treatments).

It will get better, as you know we are all different, but it will get better. My taste buds came back around the 6 month mark pretty strong, then they went away again for a few months ,then back again now ...at about 50% ...I still can't taste anything sweet, but living is sweet enough for me. HA!

Hang in there, you are a survivor and that's what counts!


Timothy1963

Stage III HPV16+ Base of Tongue: DX Oct 2011 - TX were Erbitux and Radiation Only. Last TX was Jan 2012
To Date: NED
Joined: May 2013
Posts: 63
Meli Offline OP
"OCF Kiwi Down Under"
Supporting Member (50+ posts)
OP Offline
"OCF Kiwi Down Under"
Supporting Member (50+ posts)

Joined: May 2013
Posts: 63
Thank you. Doc said I was on the outer range of normal recovery but at least I can notice a small improvement now and that was all I was hoping for... at least it now feels like I"m heading in the right direction.


2013 - 39yr old female, DX BOT SCC Stage IVA (T1N2bM0) HPV+
28 May 13 - Pharangoscopy & tongue biopsy
29 May 13 - BOT Surgery & right ND (lvls 2-5)
31 May 13 - Hemorrhage, emergency trach, critical care
BOT clr mgns, 9/67 nodes & extracapsular extension
Finished 30 rads & chemo (cisplatin) stopped after 1 round due to hearing loss
May 2015 - left supraclavicular swollen lymph node & area - CT planned 9 May
Joined: Aug 2012
Posts: 214
Likes: 1
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Joined: Aug 2012
Posts: 214
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I bottomed out between week 2-3 after treatment ended. I was a wreck, nothing by mouth and I thought the pain meds made is worse. From there the improvement was Sooooooooooo Sloooooooooooow. But improvement came. By 6 weeks after treatment I found signs of permenet improvement.

Right now, and for the next couple of weeks, focus on getting though the next feeding, and nothing more. Feedings turn into days, which turn into weeks.

Things will get better.

Good luck. and keep us posted.



Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
Joined: May 2013
Posts: 188
Likes: 4
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Senior Member (100+ posts)

Joined: May 2013
Posts: 188
Likes: 4
Glad to hear about your improvement. Do not expect more than those small signs. The Trend Line slopes upward but not at a high degree. Keep pressing through and taking care of the fundamentals everyday. I am in week 10 now of post and still have to function like that. You will keep improving.


Age 55 HPV 16+ SCC, BOT 050613 Stage IV
great team at OSU
Tx 6 weeks of rad started June 3
8 weeks of chemo started May 28
RTOG Phase III trial Cetuximab group.
Treatment completed 7/16/2013
PET Scan completed 10/08/13
Results discussed 10/11/13
NED - Free but am I
Next part of the journey?
1year PET 10/24/14 NED
Good reports now 10 years out.

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