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Kerri #189059 04-08-2015 11:25 AM
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So, it's been nearly a month on diflucan and the thrush is gone, severe pain remains. I can deal with the pain because I had a scan and check up with my MO and I have a clear CT and scope! I'm so relieved!

Thanks for all of your live and support. I'll keep you posted.

Love in OCF,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Kerri #189069 04-08-2015 02:31 PM
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Posts: 1,024
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Great news Kerri. I so hope the pain goes too and that you can manage this well.
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!
Kerri #189073 04-08-2015 06:39 PM
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Just a little more information as I also saw my Palliative Care Specialist today, as well.

My MO will check the final results of the CT when radiology reads it. She didn't see any evidence of residual thrush. I'm relieved. I will see her in 6 months with a CT of the neck and chest; also CBC for white blood count.

As far as the pain goes, I have been followed by Palliative Care Specialists at the Cancer Center since I was in treatment. We have been trying to reduce the narcotics and she wants me to take ibuprofen 600 mg, 3x/day for 2 weeks. This will hopefully break the inflammation cycle.

She also said that at this point, the narcotics might be working against me in that my nerves have gone into overdrive. She thinks that I have residual inflammation from the infection, even though it's cleared.

My MO said that I have a lot of scar tissue where the pain is; it's where the tongue (partial glossectomy site) is tethered to the floor of my mouth. She said since scar tissue doesn't heal up like the normal surrounding tissue and the radiation damage just makes things worse. Of course, scar tissue doesn't stretch or have blood supply.

So, the plan is to gradually decrease the narcotics again, as I had begun just prior to the onset of the infection. It will likely be a slow process due to the extended length of time that I have been taking them, but I know that I am in good hands with my team at the MGH Cancer Center.

Thanks, all!

Love in OCF,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Kerri #189075 04-08-2015 07:33 PM
Joined: Jun 2007
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Glad to hear your thrush has finally been eliminated. Hopefully you will begin to feel better soon.

(((HUGS)))


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
Kerri #189077 04-08-2015 07:48 PM
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Thank you, Christine and to all of you who have supported me on this thread.

((Hugs))

smile Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Kerri #189079 04-08-2015 09:55 PM
Joined: Dec 2003
Posts: 2,606
Likes: 2
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Great news, Kerri!


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Kerri #190077 06-23-2015 05:34 PM
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Posts: 596
Kerri Offline OP
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Hi, friends.

I am adding to this old thread because I'm not sure if it's related or not, but here goes.

I explained earlier in this thread that my oral pain has been much worse following a fungal infection this past Spring.

Now, I am experiencing a different kind of phenomenon in addition to the pain. The surface of my tongue is extremely sensitive to any spices (even salt), toothpaste, gentle/non-alcoholic mouthwash, any carbonated drinks (which I could previously & occasionally enjoy), and certain textures are intolerable.

I am wondering if these are typical changes due to radiation that come later post-treatment. My last radiation treatment was 10/31/12.

My next scan was supposed to take place in October (to include the chest), but my SO ordered an MRI for this weekend. He wants to cover all bases due to the persistent pain and hypersensitivity. He said that he doesn't expect to find anything worrisome, but I have proven to be the exception to the norm.

I am getting a bit ramped up with anxiety because as I type this, I camped in my 6 y.o. daughter's hospital room. She has been very, very sick and wasn't getting better. She was admitted for IV fluids. Her stool culture showed that she has contracted salmonella. She'll be starting on some heavy duty abx and continued hydration. We will be taking things one day at a time. All of this brings me back to my first signs of cancer in early 2011. She was admitted at that time due to dehydration and a UTI. I can remember that my tongue was really bothering me and I knew deep down that something was wrong. I know that this situation doesn't predict an outcome for me, but it's just like bad deja vu. I am worried about her. It's awful to see your child suffer so much.

I would appreciate any feedback or shared experience that anyone might have.

Love, hope, and strength in OCF,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Kerri #190092 06-24-2015 12:34 PM
Joined: Nov 2009
Posts: 644
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That's really hard, Kerri. I hope by now that your daughter is a bit better. I know exactly what you mean about hypersensitivity. Most of my oral tongue has gone but there's a bit on join that hates toothpaste or anything spicy. I used to have total sensitivity back in the days when I had thrush a lot plus lichen planus. Do you find that milky things work best?

I know that it's the worry of what lies beneath that is the worst thing about this. The fact that the doctor thinks it is nothing worrisome is a relief, even if the d�j� vu of your daughter's illness in combination with your feelings about your own health make you very uneasy. My mind goes along those lines too. Sometimes I've been very wrong and a few times I've been right. I feel and hope that you will be okay. It leaves you with a sore tongue but you can work around that, painful as it is, if you are basically healthy.

I had radiation a year ago and don't have any worsening of the membranes in mouth ... It's just my teeth that are taking the rap.

Best of luck to you and your daughter.
Maureen


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Kerri #190398 08-01-2015 09:31 PM
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I have the same sort of problems with mouth/tongue pain. It has never gone away and my cancer was 2001. Soda, toothpaste, mouthwash, fruit, alcohol all hurt. I never know if something will be painful until I taste a bit and my mouth seems as though it is on fire. There seems to be no help that I can find for this. I carry Anbesol Maximum liquid and q tips in my purse, have it in my nightstand, and in the bathroom. It's the only thing that helps, even though it is very temporary and I have to reapply often. I have never heard of anyone else having this problem. Good luck to you.

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