Posted By: venkat Welcoming myself to OCF - 08-12-2011 05:06 PM
Hello All, I am Venkat (Age 34) from India working as a Software Engr with the big Blue. 8 month ago, started seeing a small leukoplakic patch on right lateral border on bottom side of tongue. Contacted Oncologist, and he said it is leukoplakia and advised to grind the sharp teeth, but the dentist said no need to grind as it is equally sharp as the other side of the tongue. It slowly started becoming ulcerous in around 4 months. This time dentist said, go for a biopsy. Well, it proved to be SCC which I was suspecting for nearly 6 months. The tumor size was around 1.5 cm x 1.5 cm which doctor said is small enough and very localized by that time.

Now, surgery was done on June 10th 2011. MRI showed lymph nodes were good, but doctor did a neck dissection and removed 9 lymph nodes, 1 submandibular salivary gland and etc., All were negative for metastasis. That was good news. Post surgery, I was able to speak, but with a slur. I was feeling really better 20 days after surgery. Tongue healed completely, but was numb. Lost only 3 kgs by that time. Every pound counts as I am lean.

In the next consultation post surgery, the tumor board advised to go for preventive adjuvant radiotherapy aided by sensitizing chemo (cisplatin). This scared me really very much and it proved correct.

After 2 chemos, acidity started showing up which I never had in my lifetime. Radiation and chemo combined was causing enough distress. Now into 20th exposure among 30, here are my major problems...

1. Trismus...Able to open only 2 index fingers width...max 3 cm.

2. Very thick saliva, pungent in odor, turns yellowish if kept in mouth for around 15 to 20 min. Fills up the throat during night depriving of me sleep (on sleeping pills for the past 2 days)

3. Left lateral tongue border ulceration of around 1 cm width, 4 cm length. Yellowish in color representing mouth sore.

4. Forgot to tell, 2 teeth adjoining tumor were removed, but the last teeth (if I can call it as third molar) was spared. That should have been removed, because that kind of touches the rear edge of the mouth and kind of gets a little inside. Not sure what to do with it as I was advised by a dentist, not to go for extraction after for the next 6 months.

5. Cisplatin chemo has induced acidity, which I think is slowing reducing.

For #1 above, have ordered Therabite. Hope that helps.

For #2 above, practically how much time it takes for the saliva to thin ?, whatever is produced (I am ready to embrace dry mouth but not thick saliva). For every sentence that I have to speak, I need to spit it out.

For #3 above, I believe ulceration will go away.

For #4, I can bear with it.

Now coming to the emotional aspects, yes it feels depressed to bear through the trauma of these treatments and the strong urge to talk to people, get back to work, lead normal life whatever the new-normal is.

Hope some day, doctors could come up with a cure all kind of a medicine which helps our immune system to fight it rather than the chemo and radiation which cause way too many side effects disturbing the normal life. Atleast I am hoping in a 20 year span, some easy medicine will come up or a vaccine.

Will keep posting updates to this topic when my pending radiation finishes and I start getting normal.

Otherwise, sometimes I feel it is just one of the phases that we have to go through as authored in our life-diaries that God has desired. Scientifically, the complex machine makeup has some started developing wear and tear and perhaps with many bugs as in software. Nevertheless, things do not get fixed in fast and furious ways. So I am looking for a brighter tomorrow to lead a happy life with my one year baby girl. Not worrying too much about the future. This earth is already in a turmoil and I am just a speck on it. I guess the problem lies with God creating us so intelligent to analyze so much and write so much. Getting too philosophical, I am ending this here.

Thanks
Venkat
Posted By: ChristineB Re: Welcoming myself to OCF - 08-12-2011 07:06 PM
Venkat, welcome to OCF! You are no longer alone in your battle! Now is the time during radiation treatments when most of us started feeling pretty lousy. You are 2/3 finished already so no matter how rough it becomes, do not give up.

As far as the trismus goes, while waiting for the therabite, begin doing some mouth opening exercises. This is important so your limited opening doesnt get worse. Open your mouth as wide as possible and hold it for 7 seconds. Repeat it 7 times in a row and do this 7 times per day. Stretch as far as you can when holding your mouth open.

Soon the mucous will disappear and the dry mouth will start. If I remember correctly, it was about 3 weeks after I finished radiation when that change happened. Some patients get a suction machine to use at home. Ask your nurse about it when you go for your treatment. Its helpful to rinse your mouth a few times per day with a baking soda mixture. Mix about 2 cups of warm water with 2 tsp. baking soda and 2 tsp salt. If the salt burns, cut it back or omit it. This will also help heal your mouth.

Best wishes with everything!

Posted By: ConnieFL Re: Welcoming myself to OCF - 08-12-2011 07:45 PM
Venkat..sorry you have to go through all of this. Your signature reads similar to mine, but I didn't have the radiation or chemo.

If you didn't have mets in the lymphnodes what was the reason your Doctor ordered Radiation and Chemo, I don't understand?

Best Wishes,
Connie
Posted By: Deejer47 Re: Welcoming myself to OCF - 08-12-2011 09:04 PM
Welcome, Venkat, that's a hard road to go but plenty of support here for you.
Posted By: venkat Re: Welcoming myself to OCF - 08-13-2011 05:44 AM
Hi Christine,

I guess I have seen more posts of yours than from any other on OCF and expected a reply from you. Thank you very much for following up on my post.

1. Yes I have started mouth opening exercises. I discovered it when I was not able to mouth wide enough to keep the mouth bite during radiation. Waiting for Therabite.

2. On the cleaning front, yes I am rinsing with baking soda + salt water solution. That kind of eases the sticky / greasy mouth.

3. Good to know that the mucous will ease shortly. Not sure about the experience of dry mouth though. May God reduce that a bit.

Finally, you are doing a great service to the OCF community.

Thanks
Venkat

Posted By: venkat Re: Welcoming myself to OCF - 08-13-2011 05:57 AM
Hi Connie,

Thanks for following up on my post.

[quote=ConnieFL]Venkat..sorry you have to go through all of this. Your signature reads similar to mine, but I didn't have the radiation or chemo.[/quote]

You are very lucky to have escaped these draconian treatments.

[quote=ConnieFL]If you didn't have mets in the lymphnodes what was the reason your Doctor ordered Radiation and Chemo, I don't understand?[/quote]

Yes, that was the initial expectation from me and my family...that post surgery all is well. But sadly my surgeon after discussing in tumor board decided to go for preventive radiation therapy. The reason doctor stated...[quote]You are too young for this disease and being an individual with no bad habits like smoking, alcohol, may be I am genetically predisposed for this. So they want to make sure any microscopic level residue cancer if at all to be cleared.[/quote]All on the basis of probability, but no evidence. This really freaked me out. I didn't have a big say on post surgery treatment and so here I am in the world of radiation.

Thanks
Venkat
Posted By: Eshwar N Re: Welcoming myself to OCF - 08-13-2011 06:32 AM
Hi Venkat,

Hope you are doing fine and it is unfortunate that you have to be here but this place is weath of information and will lead you to the road of recovery.

For #1: Therabite is expensive so I hope you have read the feedback. Honestly speaking, some regular excercise will help you more.

For #2: Post-radiotherapy, it takes almost an year for saliva to thin out and develop taste-buds. Considering you are from AP, you may not be able to tolerate acidic and spicy stuff for a very long time. Once RT is over, you can probably try Papaya (Juice) to thin out saliva.

For #3: Yes the ulceration will go away, drink lot of water (atleast 4-6 L a day). If it is troubling you, you can try aloclair gel.

You need to regain weight, if you are veggie then it is going to be problem.

Take care and hope to hear from you soon.
Posted By: venkat Re: Welcoming myself to OCF - 08-13-2011 09:45 AM
[quote=Eshwar N]
For #1: Therabite is expensive so I hope you have read the feedback. Honestly speaking, some regular exercise will help you more.[/quote]
I am actually doing mouth stretches meanwhile, but was feeling a bit scared of it and so had some of my good friends in US order it for me. Let me hope it gets better. Thanks for the info.

[quote=Eshwar N]
For #2: Post-radiotherapy, it takes almost an year for saliva to thin out and develop taste-buds. Considering you are from AP, you may not be able to tolerate acidic and spicy stuff for a very long time. Once RT is over, you can probably try Papaya (Juice) to thin out saliva.[/quote]

Heard about Papaya benefits in thinning. I am going to try this out. Hope it helps. Many thanks reminding this natural way.

[quote=Eshwar N]
For #3: Yes the ulceration will go away, drink lot of water (atleast 4-6 L a day). If it is troubling you, you can try aloclair gel.[/quote]

I am on grinded liquified diet without any spice for the past 3 weeks (since third week of RND). That kind of makes me drink as much water as possible.

[quote=Eshwar N]
You need to regain weight, if you are veggie then it is going to be problem.[/quote]
I am almost 6 kg down in 2 months post surgery, chemo and 20 rad. 2 more weeks of radiation to go.

It is been very nice to see you taking care of your father so diligently. In my case, it is kind of opposite....My mother is taking care of me, almost treating me like a kid...I tend to get irritated at times though I feel very bad after that, but she bears all those. Everyone around me are helping in one way or the other. Thanks to all those folks.
Posted By: Eshwar N Re: Welcoming myself to OCF - 08-13-2011 10:22 AM
[quote=venkat]I am on grinded liquified diet without any spice for the past 3 weeks (since third week of RND). That kind of makes me drink as much water as possible.[/quote]

Venkat, few food suggestions:

1. Kerala Banana (Nendran), if you have some Mallu friends they can get it for you. You can have your mom boil it for you. Peel, deseed and mash, add some sugar and Ghee. This will make you full.
2. Porridge with Moong Dal Dhuli (2:1) pressure cooked to make loose khichidi
3. Coconut water instead of water.
4. If you eat egg, nothing better than full boiled egg.
5. You can try Nestle Resource and/or Threptin
6. Idli with Fresh Yoghurt

Eat whatever you could.
Posted By: David2 Re: Welcoming myself to OCF - 08-13-2011 09:01 PM
Venkat, adding my welcome and sorry you're going through all this. I wish you courage and strength.

Many of us myself included survived for months on various commercial brands of liquid nutrition - things like Ensure and Boost and their clones here in the States. Are these readily available to you? I found them indispensable and even now more than 2 years out still use them regularly.

As others have written, the mucositis will eventually go away. It's unpleasant and keeps you awake at night, I know. But hang in there!

Ditto for the dry mouth that inevitably follows. That one generally takes longer to abate, but there are sprays and gels and things to help. Plus just keep water handy at all times.

I was prescribed viscous lidocaine during RT to help numb the sores in my mouth so I could drink. I had a lot of those so it was only marginally successful. Maybe you'll get off with a lighter sentence! Anyway, you might ask your doctor about it.

Try and sleep as much as possible. I could barely do anything but during RT and I didn't have chemo. And keep us posted. We're all in your corner.
Posted By: Maria Re: Welcoming myself to OCF - 08-14-2011 02:18 AM
Hi, Venkat
In addition to the the liquid nutrition (which my husband hated), I made him protein shakes with whey power, Carnation Breakfast Essential powder, and various milks - rice milk, soy milk and cows milk. Typically, I would do dairy-based in the morning, then call him at work and nag him to drink a couple of Ensures, and then soy-based at night. I also added fruit to the mix - peaches were the easiest at first, then pears, prune juice and bananas for variety. We also had some monumental failures, but that's the way it goes. My guess is that Eshwar has made some very good suggestions - the Ghee in particular with help with the calories.
Now - about your mom. If she is able to make something you can swallow to keep you going, is will make her feel happy. Make sure that you give her enough information that she can help you; try to get across to her, though, that your tolerance for various foods will changing for a while, and sometimes things just don't work.
Posted By: Cheryld Re: Welcoming myself to OCF - 08-14-2011 02:49 PM
Hi there venkat! Sorry you are in the position that you have to be here but if you have this disease then this is a great place for support and advice - and everyone here has given you great suggestions. Congrats on being a 3rd of the way through treatments. It does get harder but you'll get through it fine. Do see if you can get the magic mouthwash where you are. It's a combination of numbing medications. It helps during eating - I used it in combination with my pain medication for about a week and a bit at the end of my treatments to help me get through it. The mouth sores are all part of the process... The whitish stuff might be thrush - ask your doctor - if it is cut down on the sugar you are taking in (not sure if you are eating sugar or not but it can have an impact on thrush). And yes the drool will eventually be replaced by dry mouth. Most of the time I'm okay -(I'm 3 months out) but if I talk a lot im blessed with sahara mouth! But for now just do the rinses religiously!
Also exercise your jaw as much as possible! I used to manually stretch it (make sure your hands are clean) and I was told this by my naturopalth - if your mouth isn't too sore and too tight (which it probably is at the point) - put on some clean gloves - take two fingers and if you can massage the muscle at the back of your jaw where your teeth meet - that should help with the trismus - it apparently helps relax the muscles- keep stretching though - all the muscles actually - it's important during the first year post op - because radiated tissue - can lead to fibrosis - helping to return blood flow to the area through massage and exercise (neck too) can help with this. it may not completely prevent it but it can certainly minimize it. You may not feel up to doing all this now, but if you can - do.

Good luck you are doing well... Just a few more weeks to go!
Posted By: venkat Re: Welcoming myself to OCF - 08-16-2011 02:19 PM
Thanks David for informative reply.

[quote=David2]Many of us myself included survived for months on various commercial brands of liquid nutrition - things like Ensure and Boost and their clones here in the States. Are these readily available to you? I found them indispensable and even now more than 2 years out still use them regularly.[/quote]

Yes, I am taking Prosure as a supplement thrice a day. Otherwise, I am on the mashed Indian diet and even mashed boiled eggs.

[quote=David2]
As others have written, the mucositis will eventually go away. It's unpleasant and keeps you awake at night, I know. But hang in there![/quote]
Good to know this goes away. Baking soda + salt water rinse seems to be helping a lot keeping mouth neutralized.

[quote=David2]
Ditto for the dry mouth that inevitably follows. That one generally takes longer to abate, but there are sprays and gels and things to help. Plus just keep water handy at all times.
[/quote]

Yet to receive the God's gift of dry mouth, but in certain sense, I did experience it after the cisplation chemo.

[quote=David2]
I was prescribed viscous lidocaine during RT to help numb the sores in my mouth so I could drink. I had a lot of those so it was only marginally successful. Maybe you'll get off with a lighter sentence! Anyway, you might ask your doctor about it.
[/quote]
Fortunately, I am able to drink liquids or gulp mashed food without too much discomfort till now. Yes, some other doctor whom I know personally (not the one treating) has prescribed Viscous Lidocaine and suggested to take only when the throat hurts while taking food. Have not taken yet.

[quote=David2]
Try and sleep as much as possible. I could barely do anything but during RT and I didn't have chemo.
[/quote]
Sleeping with sticky saliva depositing in throat is the most irritating of all my experiences. A continuous urge to spit it out to avoid coughing keeps me awake. Otherwise, when that sticky thing becomes really sticky, then the cough abates and I get to sleep some time. Dont know how much. Doctor has prescribed sleeping pills recently atleast for the duration of remaining 2 weeks.
Posted By: venkat Re: Welcoming myself to OCF - 08-16-2011 02:25 PM
Hi Maria,
It is very encouraging to see many Caregivers contributing to this forum. Thanks Maria for following up with my post.

[quote=Maria]My guess is that Eshwar has made some very good suggestions - the Ghee in particular with help with the calories.[/quote]
I agree, Eshwar's suggestions are really great.

[quote=Maria]
Now - about your mom. If she is able to make something you can swallow to keep you going, is will make her feel happy. Make sure that you give her enough information that she can help you; try to get across to her, though, that your tolerance for various foods will changing for a while, and sometimes things just don't work. [/quote]
Yes, to a major extent she judges on her own. But also has been listening to what I say.
Posted By: bethers0808 Re: Welcoming myself to OCF - 08-18-2011 08:50 AM
sorry to read you have to be here, but glad you found it.

My doc told me I was genetically predisposed as well, but I did smoke on and off for 7 years, total of 4...but they say that didn't cause it...I don't believe that, lol.

I am glad you are able to still tolerate eating and drinking! That's great. I wasn't able to after my 4th treatment.

Hopefully you can continue to do this throughout your whole treatment!

I am surprised they didn't tell you to do mouth stretches before and during your treatment. Mine and most that I have heard of give you stretches and advise you start them before going to treatment and continue them throughout.

The one that was most effective for me was open mouth as big as i can and hold it there to the count of 5, and repeat about 10 times and do that at least 3 times a day, but I did it probably 5 or more times a day, and really don't have much of an issue opening my mouth anymore.

I am a year out of radiation...still can't tolerate acidic or spicy food and still have somewhat thicker saliva, and dry mouth when i wake up.

Everyone experiences different things...so my results may not be the same for you.

As for the tooth issue....my dentists and oral surgeons do whatever they can to keep me from losing or having to have a tooth pulled, and they said it will be like that for the rest of my life. They said if I do end up losing one or have to have one pulled, I will more then likely have to endure hyperbaric oxygen treatments to help me heal because radiation attacks the blood vessels in your jaw, which make healing a lot harder if not impossible.

Hope the rest of your treatment comes quickly and with no more complications and you are able to continue eating and drinking throughout!
Posted By: Maria Re: Welcoming myself to OCF - 08-25-2011 06:20 PM
Hi, Venkat
just checking up on you!
Maria
Posted By: walknlite Re: Welcoming myself to OCF - 08-26-2011 02:51 AM
Just checking in to see how you are doing? This is no easy treatment.
Posted By: venkat Re: Welcoming myself to OCF - 08-27-2011 05:56 PM
[quote=Maria]Hi, Venkat
just checking up on you!
Maria [/quote]

Hi Maria, I just finished my final radiation session today. Have managed to get through 30 fractions finally. Now I am looking forward for a little bit of recovery so that...
1. I get sleep, which essentially is a problem with sticky yellow saliva filling up my throat and an urge to cough and spit it up. Not sure how much time this would take to subside.

2. My cisplatin chemo induced acid reflux does not let me sleep for atleast 2 hours after food.

3. Just need a fresh mouth ..it is been nearly 3 months now that mouth feels so toilety pungent...surgery, chemo, RAD...too many treatments for 1.5 cm x 1.5 cm tumor.

Hope in a months time, I will be a little better than what I am now.
Posted By: venkat Re: Welcoming myself to OCF - 08-27-2011 06:00 PM
[quote=walknlite]Just checking in to see how you are doing? This is no easy treatment.[/quote]

Hi, sometimes I just get so irritated with the doctors around, though in hindsight they are doing a good job of treating me. But today I finished my last radiation session and this is the end of current treatment.

Some questions...not sure if you could answer...
1. What would be a good alcohol free mouthwash. This yellowish plauqe thing is difficult to clear without a decent mouthwash. I stay in India, but can get some products from US courtesy my friends. One helped me with Therabite.
Posted By: Eshwar N Re: Welcoming myself to OCF - 08-27-2011 06:04 PM
Hi Venkat, good to hear from you. Now since your treatment is over, try Papaya (Juice) to get rid of thick saliva. Continue to gargle and drink plenty of water.

You can now try Extra Virgin Olive oil. Just swish 2 tsp and spit. It will help you lubricate your mouth.
Posted By: venkat Re: Welcoming myself to OCF - 08-27-2011 06:17 PM
[quote=Eshwar N]Hi Venkat, good to hear from you. Now since your treatment is over, try Papaya (Juice) to get rid of thick saliva. Continue to gargle and drink plenty of water.

You can now try Extra Virgin Olive oil. Just swish 2 tsp and spit. It will help you lubricate your mouth. [/quote]

Hi Eshwar,

I almost forgot about Papaya, the last time you told me. I have marked it now for immediate attention from my mother and family around.

I am able to swallow liquid foods which I am OK till I get around with the remaining ulcer on tongue. I will definitely try the Olive oil.

Could you please suggest any mouthwash that you might have used for your dad ?

Thanks
Venkat
Posted By: Maria Re: Welcoming myself to OCF - 08-27-2011 08:53 PM
Congratulations on completing your treatments! My husband uses the Biontene products - although even they were stingy immediately after rads.

It may help you to sleep propped up. The pain meds will either help you sleep or keep you awake - if they keep you awake, talk to the docs about it. Be sure to keep water next to you; if you don't have to get up to get water you may be able get back to sleep more easily.

I am glad to hear that you are able to manage fluids. If it gets a bit harder to swallow in the next week or so - don't be alarmed as the radiation is still hitting. About 10 days from the end, that will be over and you can begin to heal in earnest. Until then, sleep, take nutrition, read or watch movies, and be patient. We're rooting for you!
Posted By: ChristineB Re: Welcoming myself to OCF - 08-28-2011 01:25 AM
Biotene makes a very good mouthwash. If it is too strong for your sensitive mouth, dilute it with some water.

Congrats on finishing your treatments!!! I know right now you are feeling the worst you have felt thru this. Very soon you will begin to feel better. Yes, in one month you will have improved alot!

If you rinse your mouth with 2 cups of warm water, 2 tsp baking soda and 2 tsp salt it will help with the mucous. Repeat this several times per day. Alot of us have also taken some cold medications like Musinex to help cut the phlegm. In about 3 or 4 weeks the thick gunk in your mouth and throat will subside and turn into dry mouth. For that, you will want to get some Biotene dry mouth gel. It will help you manage the dry mouth. I also slept with a humidifier.

Best wishes with your recovery!!!
Posted By: Eshwar N Re: Welcoming myself to OCF - 08-28-2011 04:00 AM
Venkat, my dad was on primarily on Bicarb/Salt gargles and occasionally on Iodine gargles as due to lack of saliva, you may have occassional bouts of thrush (since the surgery and rt he was never able to use tongue cleaner). You can also try Biotene, if you can find it in India, probably ebay may help.

Doctor had prescribed Senquel-F toothpaste and adviced my dad to brush atleast twice a day.

All the best and hope to see you online more frequently now.
Posted By: Cheryld Re: Welcoming myself to OCF - 08-28-2011 03:02 PM
Hi venkat - glad you're done! Couple of things - it's usually 2-3 weeks before you start to feel better. But hopefully in a months time you will be on the road to recovery! Ok I know you're in India so product wise Im not sure what's offered there - here I use tom's of maine natural alcohol free mouthwash - it's minty! I put a capful into my waterpik with a bunch of water (frankly I'm four months out and mint burns still) and spray it about my mouth used to help clear out the mess in there!! It has different settings - from weak to strong - and different attachmets - for cleaning between teeth and along the gums - and one for your tongue! If you cant get the mouthwash the waterpik with even baking soda and water will help!

And I know how you feel one small sore can cause all this - bizarre! Good luck!
Posted By: venkat Re: Welcoming myself to OCF - 08-29-2011 11:41 PM
My thrush seems to be becoming worse day by day. Initially, it was a small ulcerish patch on the left border of the tongue, now it has reached the back of my last teeth (third molars, I guess). With that it becomes to difficult to even open the mouth a little bit. I was recommended Flucanazole by radiation doc, but I seem to have discontinued sometime last week because of constipation. I will start it back again.

Any suggestions on getting it under control?
Posted By: Eshwar N Re: Welcoming myself to OCF - 08-30-2011 12:47 AM
Hi Venkat, try using povidone iodine gargle (Betadine/wokadine). That will help kill thrush then you can continue with Salt/Bicarb gargles.
Posted By: venkat Re: Welcoming myself to OCF - 08-30-2011 07:21 AM
[quote=Eshwar N]Hi Venkat, try using povidone iodine gargle (Betadine/wokadine). That will help kill thrush then you can continue with Salt/Bicarb gargles. [/quote]
Thanks a ton Eshwar. I used to use it (Betadine) post surgery per my surgeon's advice. But later radiation doc said to stop using it during rad treatment. I have started using it from today. It does not seem to hurt mouth much though my mouth feels dry. My surgeon had told me to swish it for 5 min if possible and then spit it out. Not sure if 5 min is necessary.
Posted By: Eshwar N Re: Welcoming myself to OCF - 08-30-2011 08:50 AM
For my father, Betadine was prescribed by the Radition Doc, so I do not see any issue in using it post-rad for you. Swish it as long as you feel like so that it reaches everywhere and long enough to kill all microbes in your mouth.

My dad had a review today and the thrush seems to have come back for him so doc gave him Candid Mouth Paint to apply three times a day to get rid of it.
Posted By: davidcpa Re: Welcoming myself to OCF - 08-30-2011 12:27 PM
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.
Posted By: venkat Re: Welcoming myself to OCF - 08-31-2011 09:28 AM
[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.
Posted By: Cheryld Re: Welcoming myself to OCF - 08-31-2011 03:23 PM
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
Posted By: Maria Re: Welcoming myself to OCF - 08-31-2011 10:26 PM
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.
Posted By: venkat Re: Welcoming myself to OCF - 09-01-2011 05:51 PM
[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.
Posted By: Cheryld Re: Welcoming myself to OCF - 09-02-2011 12:38 AM
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.
Posted By: EllenB Re: Welcoming myself to OCF - 09-05-2011 02:53 AM
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!
Posted By: venkat Re: Welcoming myself to OCF - 02-07-2014 06:29 PM
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.
Posted By: Uptown Re: Welcoming myself to OCF - 02-07-2014 09:50 PM
Great news Venkat! Thanks for caring enough to come back and share your successes. Best wishes for many kore years just like this.
Posted By: Cheryld Re: Welcoming myself to OCF - 02-07-2014 09:56 PM
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... smile somewhere in the nether regions... smile
Posted By: venkat Re: Welcoming myself to OCF - 09-08-2017 04:05 PM
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.
Posted By: tamvonk Re: Welcoming myself to OCF - 09-09-2017 09:20 AM
Fantastic to hear your update Venkat.
Thrilled to hear of your growing family and that life is good.
Tammy
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