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Re: PNI present, what to do next? [Re: son_of_patient] #196171
04-17-2018 08:26 AM
04-17-2018 08:26 AM
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son_of_patient Offline OP
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Thank you so much for replying tlc356, Paul and gmcraft!

Paul,
They removed the nasal tube because Dad asked them to. He was experiencing irritation in throat due to the tube.I informed him that we may need the tube again once RT starts, he said we'll again get it installed if we need it. He's more cheerful now with the tube gone, probably psychological. Still, whatever makes him happy. smile

gmcraft,
We haven't contacted the radiation oncologist yet. The surgeon who performed dad's surgery is saying that RT won't start before atleast 3 weeks from now. We will have weekly follow-up visits till then to see dad's status. Once the surgeon says we can start with RT, I'll ask the radiation oncologist about the radiation dose, fractionation, areas to be radiated etc.
Thank you so much for your advice! I will ensure that dad stays hydrated during RT and will watch out for sores.

Hoping that he won't have to go through any permanent side effects.

Will update after the next weekly follow-up.

Thanks once again everyone! Your help means a lot to me. Hope you and your loved ones recover soon! smile
Kind regards


Son of patient with moderately differentiated squamous cell carcinoma of the tongue.
Histopathological report results post surgery which involved resection of tongue with sufficient margins and neck dissection upto level IV:
Staging: pT1N0M0
Margins are clear, so are nodes
PNI present
Degree of keratinization is moderate
Brynes infiltrating pattern 3

"Impediment to action advances action. What stands in the way, becomes the way." - Marcus Aurelius
Re: PNI present, what to do next? [Re: son_of_patient] #196173
04-17-2018 11:09 AM
04-17-2018 11:09 AM
Joined: Jul 2012
Posts: 3,135
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PaulB Offline
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You’re welcome son of patient! If any questions pop up, ask here, besides with the doctors!

Good luck!
Paul


10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent






Re: PNI present, what to do next? [Re: son_of_patient] #196192
04-19-2018 08:19 PM
04-19-2018 08:19 PM
Joined: Jun 2007
Posts: 10,225
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ChristineB Offline

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ChristineB  Offline

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Welcome to OCF! Im sorry its taken me a while to welcome you. I knew you were in great hands with Paul and the other members who have been helping you. Some of the more technical things that have been discussed, you should discuss with your fathers medical team. Since our members do not come from medical backgrounds anything said is never intended to replace the medical advice of a physician.

The 3 weeks until rads starts will go very quickly. There are lots of things that need to be done to prepare for rads. He should have a full blood panel done including thyroid and testosterone levels. Down the road most patients who have had radiation to the head and neck areas have issues with those things. Its important to get the numbers now, later when your father has issues with his thyroid and testosterone levels his doctor needs to know what is normal for your father.

Radiation treatments for OC patients has a major impact on the patients ability to eat. Patients sense of taste, ability to swallow, saliva and painful mouth sores (almost all patients who have rads will eventually get mouth sores) may be some of the issues patients go thru during rads and in their recovery phases. The side effects I mentioned are on a temporary basis but to the patient it seems to be forever! Im sure at this time after the surgery your father had he isnt able to eat as well as he normally would be. When going thru radiation and the recovery phase (after completing radiation treatments), most patients struggle to take in enough calories and drinking enough water. Eating and drinking are the most important things a patient can do to make everything as easy as possible. The better your father can do with taking in at the very least 2500 calories and 48-64 oz of water every single day, the easier this will be for him. I know it sounds like alot but those are the bare daily minimums, if you can get your father to push himself to take in more that will only help to make everything easier on your father. Cancer patients going thru a cancer diagnosis, treatments and then the recovery phase affects how their body burns calories. Trying to fight the cancer and rebuild the body causes patients to burn calories at an incredible rate which is why they need such a huge amount of calories and water. I tend to nag our members about intake. I hate seeing anyoen struggle especially when its something that they can change just by upping their intake.

Best wishes for your fathers continued recovery.


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
Re: PNI present, what to do next? [Re: son_of_patient] #196208
04-21-2018 04:15 AM
04-21-2018 04:15 AM
Joined: Apr 2018
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son_of_patient Offline OP
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Wow, that was really informative. Thank you so much Christine!

I will make sure to get the testosterone and thyroid hormone levels noted before the RT starts. Will also read up about it as to why these hormones are affected.

I also understand that in order to get advice on technical issues I must see the doctors and I do exactly that. However, people at OCF have learnt so much from their experience that I love to get your perspective and note down what all I need to tune my ears to when the doctor brings something up, or what all to ask the doctor.

I will also make sure that my father's calorie and water intake is sufficient. Will ask the doctor to recommend a dietitian who can give us the right diet plan.

Thank you once again. Take care! smile


Son of patient with moderately differentiated squamous cell carcinoma of the tongue.
Histopathological report results post surgery which involved resection of tongue with sufficient margins and neck dissection upto level IV:
Staging: pT1N0M0
Margins are clear, so are nodes
PNI present
Degree of keratinization is moderate
Brynes infiltrating pattern 3

"Impediment to action advances action. What stands in the way, becomes the way." - Marcus Aurelius
Re: PNI present, what to do next? [Re: son_of_patient] #196485
05-22-2018 08:48 PM
05-22-2018 08:48 PM
Joined: Apr 2018
Posts: 9
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son_of_patient Offline OP
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Hello everyone!

I followed Christine's advice and got CBC and KFT done before the RT to have his testosterone and thyroid numbers. Wanted to share the developments as of now.

So today is the 15th session of IMRT (28Gy/60Gy received). Dad is developing ulcers in mouth and throat but he seems to be determined to go through the remaining 15 sessions without nasal feeding pipe.
  • Diet:
    • That said, he is having difficulty swallowing food because of the above mentioned ulcers and doctor recommended that he should use glycerine and Mucaine gel (mild local anesthetic) 15 minutes prior to eating anything to reduce pain in ulcers when he tries to eat something.
    • We have modified his food intake to semi-solid and liquid diet which consists of oats, protein shake, cooked pulses with boiled rice. He is drinking around 70-74 oz water everyday.
  • Other symptoms:
    • He's also experiencing headache and Dr. recommended Ultracet to take care of that.
    • Apart from that he's experiencing mild fever ~99-100 degrees fahrenheit which comes and goes.
    • His teeth have become particularly sensitive as well, we are planning to start using toothbrush with soft bristles and thermoseal RA toothpaste to take care of this sensitivity.

That's it as of now. Let me know if you have anything to say on the above points.

Thank you!


Son of patient with moderately differentiated squamous cell carcinoma of the tongue.
Histopathological report results post surgery which involved resection of tongue with sufficient margins and neck dissection upto level IV:
Staging: pT1N0M0
Margins are clear, so are nodes
PNI present
Degree of keratinization is moderate
Brynes infiltrating pattern 3

"Impediment to action advances action. What stands in the way, becomes the way." - Marcus Aurelius
Re: PNI present, what to do next? [Re: son_of_patient] #196496
05-24-2018 08:18 PM
05-24-2018 08:18 PM
Joined: Jun 2007
Posts: 10,225
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ChristineB Offline

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ChristineB  Offline

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Joined: Jun 2007
Posts: 10,225
PA
Your father is at the half way point where most patients begin to notice the side effects. For mouth sores, your father should be rinsing his mouth at least 4x a day with one cup warm water, 1 tsp baking soda and 1 tsp salt. The salt will probably burn like heck. Its ok to cut it back to 1/2 tsp or even less. Just try to get some salt into the mixture. Swish it around for 30 seconds or longer if he can tolerate it and spit it out. Over the years Ive heard from quite a few members who have touted the wonders of using manuka honey on their mouth sores. Im sorry but I cant remember which number is the best for the manuka honey but it was discussed a good 5 years ago, maybe longer.

Pay close attention to your fathers intake. Every single day he must take in at the very least 2500 calories and 48-64 oz of water. Sounds like he is doing great with his water consumption. Weight loss is an indicator that your father isnt getting enough calories. Doctors prefer to have their patients maintain their original weight when going thru treatments, even those who have extra weight they could easily afford to lose. Its very difficult to eat when you have a sore throat and mouth sores.

Another thing to get is a prescription from his doc for magic mouthwash (MM). Theres several variations of MM. The combo I had was malox, benedryl and lidocaine. Your father would swish this around in his mouth and spit it out before trying to eat. It will numb his mouth long enough for him to eat without so much pain.


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
Re: PNI present, what to do next? [Re: ChristineB] #197719
12-24-2018 02:20 AM
12-24-2018 02:20 AM
Joined: Apr 2018
Posts: 9
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son_of_patient Offline OP
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Hello everyone!

It's been a while and I'm back again to share the progress as of now and to listen to you guys in case you have an idea as to what's going on/ if there's someone who's been through a similar situation before.

So 6 months after my father's radiotherapy we went for the first post RT/surgery MRI scan as per the doctor's advice. The MRI report said the following:

  • No abnormal enhancement in the primary site (tongue) to suggest any recurrence. (YAY!) smile
  • Mildly enhancing soft tissue thickening involving left mylohyoid which was not seen in the previous MRI (?)
  • Few small nodes seen in level 1b and 2 (?)
  • Degenerative spondylotic changes in visualized cervical spine. Mild posterior disc bulge at C3-4 level and diffuse disc bulge at C4-5 and C5-6 levels. (?)


I have an appointment with the doctor today to understand points 2,3 and 4 but I'd love to know if anyone else has faced something similar.

As far as the psychological side of things are concerned, father is more moody now. Gets angry quite easily but realizes there was no need to get angry afterwards. He has all of my love and support. He stopped smoking but resumed alcohol consumption a month after the radiotherapy despite my constant questioning. He doesn't drink too much, it's more like either a pint of beer or half a quarter whisky (not both of them together) but that's on a daily basis which worries me given that the doctor had asked him to use a non alcoholic mouth wash. frown

That's is as of now. Hopefully points 2,3 and 4 are not to be worried for. Hopefully dad will stay football fit. smile

I hope everyone's happy, healthy and making progress in their lives. There's a beautiful hymn in sanskrit which I'd like to end this post with:

सर्वे भवन्तु सुखिनः
सर्वे सन्तु निरामयाः ।
सर्वे भद्राणि पश्यन्तु
मा कश्चिद्दुःखभाग्भवेत् ।
शान्तिः शान्तिः शान्तिः ॥

Here's the line by line meaning:

1: May All become Happy,
2: May All be Free from Illness.
3: May All See what is Auspicious,
4: May no one Suffer.
5: Peace, Peace, Peace.


Son of patient with moderately differentiated squamous cell carcinoma of the tongue.
Histopathological report results post surgery which involved resection of tongue with sufficient margins and neck dissection upto level IV:
Staging: pT1N0M0
Margins are clear, so are nodes
PNI present
Degree of keratinization is moderate
Brynes infiltrating pattern 3

"Impediment to action advances action. What stands in the way, becomes the way." - Marcus Aurelius
Re: PNI present, what to do next? [Re: son_of_patient] #197720
12-24-2018 07:18 AM
12-24-2018 07:18 AM
Joined: Oct 2012
Posts: 1,055
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gmcraft Offline

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Thanks for the beautiful hymn.

I’m afraid that, like you, I have no clue what the radiology report means. It really is best you take it up with the doctor. I would also talk to the doctor about the drinking and get him to speak to your father. If you father won’t listen to you, he may listen to the doctor.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Re: PNI present, what to do next? [Re: gmcraft] #197721
12-24-2018 09:50 PM
12-24-2018 09:50 PM
Joined: Apr 2018
Posts: 9
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son_of_patient Offline OP
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Thanks for the advice gmcraft!

So, according to the doctor the above mentioned suspicious looking points are RT side effects. He did a physical examination by pressing the mylohyoid area, he said it seems clear as of now. He asked to come back again for a checkup after 3 months. I want a second opinion though.

I also had another conversation with dad about alcohol and he said he'll quit altogether. I told him if he can do that then that's great otherwise start slowly. Reduce the frequency and gradually get to the point where you don't feel like having it. He seems on board. smile


Son of patient with moderately differentiated squamous cell carcinoma of the tongue.
Histopathological report results post surgery which involved resection of tongue with sufficient margins and neck dissection upto level IV:
Staging: pT1N0M0
Margins are clear, so are nodes
PNI present
Degree of keratinization is moderate
Brynes infiltrating pattern 3

"Impediment to action advances action. What stands in the way, becomes the way." - Marcus Aurelius
Re: PNI present, what to do next? [Re: son_of_patient] #197722
12-25-2018 12:10 PM
12-25-2018 12:10 PM
Joined: Oct 2012
Posts: 1,055
Toronto, Canada
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gmcraft Offline

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Posts: 1,055
Toronto, Canada
Glad to know it’s good news all around.

So much better that your Dad buys into the idea of giving up alcohol, it will make it so much easier for him and the family.

Wishing you happy holidays!


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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