| | Joined: Aug 2011 Posts: 17 Member | OP  Member
Joined: Aug 2011 Posts: 17 | [quote=davidcpa]Stay on top of the thrush. It will NOT go away on it's own. Some OC patients develop chronic thrush, i.e. constantly occurring and can only be treated by constant meds. [/quote]
It seems to be worsening every day. Doctor had advised Fluconazole tablet and Candida mouth paint. Looking at its rapid progress to the cheeks as well, it was only on tongue before, I am rather very scared of when this is going to go away !
Betadine mouthwash does not seem to help atleast within the last 2 days. Probably my immune system is too compromised with the Cisplatin chemotherapy.
The things are looking much scarier than when living with cancer. Not sure if the surgery was enough for me, why the docs had to treat me with aggressive chemo and rad when there was no nodal metastasis.
- Age 34 at DX 4th June 2011, Non-smoker, Non-alcoholic
- SCC on lateral right border of tongue, T1-N0,
- Surgery done to remove tumor on tongue
- RND to remove 9 lymph nodes, no MET(s)
- 3 weekly cycles of 50 mg cisplation chemo
- IMRT RAD 30 exposures, still 11 more to go
| | | | | 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 | Hi venkat - the reason they treated you with the rads and chemo was that this cancer can be aggressive. It's happened before that they have sent people home post op said you're cured only to have it recur again months later - also when it happens it can some times run rampant or be caught at a later stage - so then this requires more surgery - which is harder to heal etc...
Sorry you're having so much trouble with thrush - it does sound like your immune system is weakened - not a surprise with the chemo - try to take in enough protein and iron to help boost it - I know it's hard when you are having trouble eating. Also yogurts - etc... Check with your dietician they maybe able to help. Sometimes our bodies get so out of whack that it's hard to get it all sorted out.
Take care
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: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | We're all pulling for you, Venkat. You're going to get through this and heal. I think in some ways it's worse if you are young and haven't had a lot of physical misery yet.
The mouth stuff is just wretched - I hated having to watch my husband go through it - but he's doing much better now.
Do you like reading? If you like science fiction, you might like Charles Stross' work. It is very engaging, and takes you right into another world. I don't remember where I heard it, but someone described the idea of carrying an emotional and medical burden like it was a physical one. If you hold a weight in your hand, eventually it will seem impossible, and painful to carry. If you can put it down for a bit, and rest, you will be able to pick it up and carry on again. Books, music, meditiation - all let you put the burden down for a time.
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: Aug 2011 Posts: 17 Member | | OP Member
Joined: Aug 2011 Posts: 17 | [quote=Maria]We're all pulling for you, Venkat. You're going to get through this and heal. I think in some ways it's worse if you are young and haven't had a lot of physical misery yet.[/quote]
In one way, you are right in saying, being a healthy individual without any major ailment so far upto 34 years, make me emotionally very anxious about all bad things happening to my mouth. Now the thrush seems to be even weakening the gums..they seem to suggest tissue around them is reddening, which I never experienced before. All sorts of microbes seem to enjoy the sticky saliva. Every day, new things are showing up.
[quote=Maria]
Do you like reading? If you like science fiction, you might like Charles Stross' work. It is very engaging, and takes you right into another world. I don't remember where I heard it, but someone described the idea of carrying an emotional and medical burden like it was a physical one. If you hold a weight in your hand, eventually it will seem impossible, and painful to carry. If you can put it down for a bit, and rest, you will be able to pick it up and carry on again. Books, music, meditiation - all let you put the burden down for a time.[/quote]
I typically read less from books...may be this internet thing has killed the reading. I did take a spiritual book today and read for a while. Played with my little kid for a while. Anyways, let me stick around for sometime and see if things improve.
- Age 34 at DX 4th June 2011, Non-smoker, Non-alcoholic
- SCC on lateral right border of tongue, T1-N0,
- Surgery done to remove tumor on tongue
- RND to remove 9 lymph nodes, no MET(s)
- 3 weekly cycles of 50 mg cisplation chemo
- IMRT RAD 30 exposures, still 11 more to go
| | | | | 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 | Venkat... maybe cleaning more frequently will help a little. I used to rinse with the baking soda mix frequently, and at bed and in the morning brush my teeth and use a waterpik to clean out the sticky saliva. Also if you stay away from sugar it may help, apparently it helps thrush thrive. good luck sorry you're having so much trouble. If you are doing flouride treatments they may be why you're having trouble with redness, frankly though the radiation can cause all that but it does get better once you're done. take care.
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: Jun 2011 Posts: 147 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2011 Posts: 147 | Hi Venkat. Sorry that you are having trouble. Here is a suggestion: thrush is usually from an overgrowth of yeast. I have candida which is the same overgrowth but in my digestive tract. If you can stay away from sugar as was suggested then try to. Sugar feeds the yeast. Try drinking keifer if you can get it down. It is like liquid yogurt and will help to restore some good bacteria. My husband has been obsessive about brushing with fluoride toothpaste and using the trays until his mouth got too sore. That seemed to help too. Stay strong!
caregiver for husband
diagnosed with oral cancer May 2011 after 6 mo
node lft side and several in jaw involved
Base of Tongue Stage IVA
7 weeks radiation
Cisplatin-3 chemos (beginning,middle,end) IntraV administration
| | | | | Joined: Aug 2011 Posts: 17 Member | | OP Member
Joined: Aug 2011 Posts: 17 | Hi folks,
After having undergone cancer treatment for my tongue in June 2011, just wanted to let you know that I am doing good. Was back to work as a software engr at IBM after 3 months (around Dec 2011 I joined back). My daughter is now 3 years old. I have attained my new normal. The dry mouth does not bother that much, sweets do not taste sweet which is OK :-).
Otherwise, it is nearly 3 years now...after my stint with cancer. Infact, I forgot all the terminology of cancer that were cited in this forum.
I am posting this to let others know that, you can live on happily. Be patient.
On a happier note, I am enjoying my life with my 3 year daughter in my own house (no loan), my own car and a happy IBM job which recently promoted me inspite of my difficulty in communicating well.
- Age 34 at DX 4th June 2011, Non-smoker, Non-alcoholic
- SCC on lateral right border of tongue, T1-N0,
- Surgery done to remove tumor on tongue
- RND to remove 9 lymph nodes, no MET(s)
- 3 weekly cycles of 50 mg cisplation chemo
- IMRT RAD 30 exposures, still 11 more to go
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Great news Venkat! Thanks for caring enough to come back and share your successes. Best wishes for many kore years just like this.
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
| | | | | 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 | That's Awesome!! I hit my three year surgical mark a few days ago.. I have 3 more months before I hit my three year radiation completion date - I think your sweet taste is hanging out with mine...  somewhere in the nether regions...
Last edited by Cheryld; 02-07-2014 02:58 PM.
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: Aug 2011 Posts: 17 Member | | OP Member
Joined: Aug 2011 Posts: 17 | This is Venkat back again. 6 years down and I am doing good as ever.
New things in life - My daughter has grown to 7 years now and now I have one and half year son.
- Age 34 at DX 4th June 2011, Non-smoker, Non-alcoholic
- SCC on lateral right border of tongue, T1-N0,
- Surgery done to remove tumor on tongue
- RND to remove 9 lymph nodes, no MET(s)
- 3 weekly cycles of 50 mg cisplation chemo
- IMRT RAD 30 exposures, still 11 more to go
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