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Stage IV tongue cancer, recovering in L.A. #200169
05-29-2020 10:45 AM
05-29-2020 10:45 AM
Joined: May 2020
Posts: 1
K
ken2esq Offline OP
Member
ken2esq  Offline OP
Member
K

Joined: May 2020
Posts: 1
A few months ago, I was diagnosed with Stage 4 tongue cancer, then within a few weeks I was off work and getting daily radiation and weekly chemo treatments, which went on for seven weeks / 35 radiation sessions. I finished the treatments May 15. I'll find out from the PET scan in a few months just what if any cancer remains.

I'm joining now because I've been on all-liquid diet for most of this treatment due to mucositis, and even drinking liquids is very painful for me. My doctor has been trying all this different pain relief stuff, and my head is spinning from it all. Most recently, he has me using Fentanyl spray for "breakthrough" cancer pain. However, this has not worked well IMO, and I wanted to see what other people were doing about pain and, in particular, if any were using Fentanyl spray and, if so, how that was going for them.


~~~~~~~~~~~~~~~~~~~~~~
2/26/20 (est): dx Stage IV squamous cell tongue cancer, inoperable due to size / spread into lymph nodes
3/26/20 - 5/15/20 (est.): chemotherapy (7) & radiation (35) treatments (outpatient, San Fernando Valley, CA)
5/16/20 - present: post-treatment recovery awaiting PET Scan 12 weeks post-treatment (early August?) to assess cancer presence.
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Re: Stage IV tongue cancer, recovering in L.A. [Re: ken2esq] #200170
05-29-2020 05:04 PM
05-29-2020 05:04 PM
Joined: Feb 2020
Posts: 32
Michigan, United States of Ame...
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DavidUofMsavedMe Offline
Contributing Member (25+ posts)
DavidUofMsavedMe  Offline
Contributing Member (25+ posts)
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Joined: Feb 2020
Posts: 32
Michigan, United States of Ame...
I'm sorry to hear about your cancer diagnosis and subsequent treatment. I finished my treatment two and half months ago and have my PET scan in 2 weeks. While the pain I went through was bad it never got so severe that I needed fentanyl (I used low dose morphine). I managed to eat throughout my treatment, though towards the end I was on soft foods. But it would take up to an hour to eat sometimes because of the pain. I used to use oral lidocaine before eating to lessen the pain, but it did not always work well enough.

I would advise you consume enough calories (and protein to help with healing) every day. Stay hydrated too.


The number of people involved in my care (@ a CCC) is humbling. Doctors, nurses, therapists, support staff, & of course, family. With everyone fighting for me to beat cancer the least I can do is fight back and win!
Re: Stage IV tongue cancer, recovering in L.A. [Re: ken2esq] #200203
06-18-2020 12:27 PM
06-18-2020 12:27 PM
Joined: Jun 2019
Posts: 158
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Dizz_zzey Offline
"OCF across the pond"
Dizz_zzey  Offline
"OCF across the pond"
Senior Member (100+ posts)
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Joined: Jun 2019
Posts: 158
Hi ken, so sorry about your diagnosis. I too had stage 4 tumour in my tongue but I had a total glossectomy done to remove it. I had the same amount of radiation. I found I couldn't eat from the end of week 5. I didn't use fentanyl though, I was on pregablin (from the gabapentin family) and rinsed my mouth out with warm water to help ease the pain. It wasn't too bad, just the ulcers were painful


F 39 x-smoker, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 glossectomy neck dissection RFFR
33 doses RT 17th Sept '19
2x cispltin
Re: Stage IV tongue cancer, recovering in L.A. [Re: ken2esq] #200216
06-21-2020 01:31 AM
06-21-2020 01:31 AM
Joined: Oct 2017
Posts: 26
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Michael Young Offline
Contributing Member (25+ posts)
Michael Young  Offline
Contributing Member (25+ posts)
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Joined: Oct 2017
Posts: 26
I didn't feel much pain during my treatment, not sure what the doctors used. Hope you have good PET result


T4aN2cM0 left tongue SCC 10/17
Moderately differentiated SCC
PEG, Trachy, glossectomy, en bloc neck dissection and reconstruction 11/17
Radiation (IMRT variant) and Chemo therapy ( 2xcispltn) completed 2/18
PET - NED 05/18
CT - NED 07/18
CT - NED 10/18
CT - NED 02/19
CT - NED 06/19
MRI H&N, X-ray chest - NED 10/19
MRI H&N NED 05/20
Re: Stage IV tongue cancer, recovering in L.A. [Re: ken2esq] #200227
06-27-2020 03:45 PM
06-27-2020 03:45 PM
Joined: Jan 2020
Posts: 49
Los Angeles, ca
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Kevster Offline
Contributing Member (25+ posts)
Kevster  Offline
Contributing Member (25+ posts)
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Joined: Jan 2020
Posts: 49
Los Angeles, ca
I was prescribed Lyrica also for the pain

Also a medicine called Doxepin, which is a powder-filled capsule pill that you pull apart, dissolve the power in water, swish it for a minute and spit. It was helpful.


Stage 3 cancer of right side of tongue
Tumor: t2.
Lymph nose spread
Partial glossectomy and neck dissection (2/12/20)
Never smoker
Completed six weeks of radiation on 5/6/20
Re: Stage IV tongue cancer, recovering in L.A. [Re: Kevster] #200229
06-29-2020 03:29 AM
06-29-2020 03:29 AM
Joined: Aug 2019
Posts: 52
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Barry Toronto Offline
Supporting Member (50+ posts)
Barry Toronto  Offline
Supporting Member (50+ posts)
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Joined: Aug 2019
Posts: 52
I was prescribed hydromorphone and lyrica. Took a while to get the dosage right but eventually effective.


Preliminary diagnosis of SqCC at base of tongue August 2, 2019.
Biopsy surgery on August 15
Confirmed sqcc from biopsy Aug 20 - hpv type 16
33 radiation treatments ended October 25, 2019.
3 (large dose) cisplatin treatments.

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