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Re: Home Time [Re: Dizz_zzey] #198968
08-30-2019 06:04 AM
08-30-2019 06:04 AM
Joined: Jun 2019
Posts: 46
San Antonio, Texas
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Mokie Offline
Contributing Member (25+ posts)
Mokie  Offline
Contributing Member (25+ posts)
M

Joined: Jun 2019
Posts: 46
San Antonio, Texas
Hi Dizz.
I’m doing Ok. Had some swelling under my jaw both sides and left side of neck under ear where I can feel swollen lymph nodes. Had surgery on 22 July and have 2 more weeks before my 6 week check up and really don’t want to pester the surgeon as I’ve already called him twice and had to go see him cause a wound was draining yellow exudate where a suture was coming through and rubbing the floor of my mouth whereI didn’t want to talk or eat. There was no infection and he just had to cut the suture which gave me some relief until a 1/2 inch thread finally came out of the wound and it closed. Been having intermittent numbness of left cheek and left side of my mouth also. Really don’t know if I should wait the 2 weeks since there’s no tenderness or redness in the neck and the sensation is coming back slowly in the tongue which maybe the cause of the intermittent numbness in the cheek and mouth. I hate playing doctor so I can spare them from something that maybe completely normal for this Partial Glossectomy. Then again it could be an ominous sign of recurrence in the lymph nodes already. They should have a walk in Office with a nurse practitioner to evaluate these kind of things so you don’t have to pester the surgeons. I know their overwhelmed at times.

Last edited by Mokie; 08-30-2019 06:48 AM.

SSC Lt sublingual tongue; Age 62
Positive biopsy 20June2019
Staging done 2 Jul : Stage 1
Quit smoking 15 years ago; not a drinker; no HPV
Pet/ CT 6Jul2019 : Negative. Not even the Lt tongue lit up.
Partial Glossectomy 22Jul2019
Re: Home Time [Re: Mokie] #198974
09-03-2019 06:32 AM
09-03-2019 06:32 AM
Joined: Jun 2019
Posts: 128
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Dizz_zzey Offline OP
"OCF across the pond"
Dizz_zzey  Offline OP
"OCF across the pond"
Senior Member (100+ posts)
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Joined: Jun 2019
Posts: 128
Oh Mokie,
I know what you mean by requiring a walk-in office with a nurse. You start questioning things, then second guessing them and then before you know it you get yourself in a tizzy.
I hope everything is setting down and the intermitten numbness has gone.


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 subtotal glossectomy neck dissection RFFR
33 doses RT Start 17th Sept '19
2x cispltin
Re: Home Time [Re: Dizz_zzey] #198976
09-04-2019 07:22 AM
09-04-2019 07:22 AM
Joined: Mar 2019
Posts: 77
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Crystal J Offline
Supporting Member (50+ posts)
Crystal J  Offline
Supporting Member (50+ posts)
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Joined: Mar 2019
Posts: 77
Hi Dizz,

It sounds like you are progressing rather well!! That's awesome!

Back later, Crystal


4/2017- Stage III SqCC- Tongue
+PNI
Posterior Margin +
Invasive moderately differentiated keratinizing SqCC
Tumor- 6.3 Centimeters
Invades tonsil & salivary glands
Negative for all HPV types
Subtotal Glossectomy, bilateral ND, Tracheo, Mandibullect, Free Flap reconstruction.
10/2017 Relapse, Recur to tongue, Mets to lip, All Pos. Margins.
12/2017 Recur BOT + Marg, re-xcisn Lip, + Marg
2/2018 - 7 wks IMRT
4/19 New Primary SqCC, Floor mouth & tongue flap . 1 mm Marg
New Dx Field Cancerization

Re: Home Time [Re: Dizz_zzey] #199045
09-13-2019 02:42 AM
09-13-2019 02:42 AM
Joined: Jun 2019
Posts: 128
D
Dizz_zzey Offline OP
"OCF across the pond"
Dizz_zzey  Offline OP
"OCF across the pond"
Senior Member (100+ posts)
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Joined: Jun 2019
Posts: 128
Hey everyone,

I was told last week that I need 33 doses of radiotherapy due to a 1mm margin by whats left of my tongue. They want to ensure that I don't lose that little sliver of tongue and have to go through the whole surgery again. I am OK with that as I am in a good place right now.
I am also going to have chemo. 3 doses of cisplatin once every 3 weeks, 10 hours each session, but they will admit me for an overnight stay for each dose. Again I am happy with that.
My immunotherapy (pembrolizamub) will start at the same time, this will be once a week every 3 weeks for 12months.

All of this starts next week, where I'm being admitted on 16th Sept. I'll have immunotherapy first and then the cisplatin over night. Radiotherapy will start on the 17th at 9am.
With the way everything has planned, I will have chemo and rads done by Oct 31st. I am super happy with that as I'm 40 a week later, so I'm hoping I will be well enough to have the birtday gin and tonic I promised myself laugh

I've still got numbness in my left thumb and part of my left hand, my ears, both sides of neck and parts of my chest. I still have some swelling in my jaw, neck and chest. I've no mucus, but I still over salivate, except when I'm laying down and thats when my mouth goes dry. I get a dry mouth at night, so I drink water to freshen my mouth up. I use biotene occasionally but I can't always get the correct amount (one night I put a bit too much in and my mouth went really sticky). I might have to try the mouthwash rather than the gel.

I'm now using my RIG/feeding tube very little. I have one medication that I put through it, and a protein drink as both taste awful, so I'm happy to bypass my mouth.

My speech is doing well. I still struggle on the phone so my husband is on stand-by should I have an issue.

I don't feel as vulnerable as I did before when I'm out of the house. It's only when I get really tired do I feel that vulnerability more. I had one incident with a man who got into my booked taxi. I had my walking stick as I was so tired and shaky after a full day in hospital. I politely said to him that he'd got into the wrong taxi by mistake and he started having a go at me telling me it was his. Once the taxi driver asked him if he was Mrs XXX the guy got out of the taxi and started to yell at me telling I need to learn some manners.
At this point my mouth had started to become foamy, I'm shaking as I'm getting into the taxi and I couldn't talk. The guy was still yelling at me as we drove away.
The old me would have given him what for, but I just couldn't talk to tell him to grow up and go away.

Ah well.

I'm starting to eat foods such as soup, custard, smothies, etc. I made a jacket potato and mashed the hell out of the flesh, adding lots of butter, yoghurt, cheese and chives. It took me 90 minutes and a big glass of water, but I did it and it was sooo good. I also made a guacomole by mashing a very ripe avocado with lime, yoghurt and garlic. That was great too.

I'm going through my recipe books for ideas to see what I can adapt for OC patients and I'm thinking of writing a recipe book. I see it that I've got quite a bit of time off work and when I'm having good days that'll be the time to concentrate on the book. Plus it'll put my chef skills into good use.

Hope you're all OK


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 subtotal glossectomy neck dissection RFFR
33 doses RT Start 17th Sept '19
2x cispltin
Re: Home Time [Re: Dizz_zzey] #199046
09-13-2019 05:23 AM
09-13-2019 05:23 AM
Joined: Jun 2019
Posts: 46
San Antonio, Texas
M
Mokie Offline
Contributing Member (25+ posts)
Mokie  Offline
Contributing Member (25+ posts)
M

Joined: Jun 2019
Posts: 46
San Antonio, Texas
So happy your doing well Dizz. Sounds like your mentally ready for the chemo and radiation. I maybe following in your footsteps. My first post op appointment with the my surgeon is this morning. I’ve been having intermittent numbness of my Rt face and lips especially in the mornings. Lips feel swollen during that time. I also feel some swelling over the angle of my Lt jaw (? Parotid. Gland). Tongue is still burning and I have nausea every morning now for a couple hours then occasionally throughout the day. I have a feeling my check up for Stage 1 Partial Glossectomy is not going to be good. I’m prepared for the worst. I hope to be as strong as you Dizz should my pathway follow yours. Keep up the good work and thank for the detailed update. Hugs.


SSC Lt sublingual tongue; Age 62
Positive biopsy 20June2019
Staging done 2 Jul : Stage 1
Quit smoking 15 years ago; not a drinker; no HPV
Pet/ CT 6Jul2019 : Negative. Not even the Lt tongue lit up.
Partial Glossectomy 22Jul2019
Re: Home Time [Re: Mokie] #199047
09-13-2019 06:06 AM
09-13-2019 06:06 AM
Joined: Jun 2019
Posts: 128
D
Dizz_zzey Offline OP
"OCF across the pond"
Dizz_zzey  Offline OP
"OCF across the pond"
Senior Member (100+ posts)
D

Joined: Jun 2019
Posts: 128
Oh blimey Mokie, I hope it's better than you think. The numbness could be anything. If you do end up following me I know you can do it. You are a lot stronger than you give yourself credit for. Look how far you've come.
I'll be thinking of you tomorrow for your appointment


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 subtotal glossectomy neck dissection RFFR
33 doses RT Start 17th Sept '19
2x cispltin
Re: Home Time [Re: Dizz_zzey] #199086
09-17-2019 01:17 PM
09-17-2019 01:17 PM
Joined: Jun 2019
Posts: 128
D
Dizz_zzey Offline OP
"OCF across the pond"
Dizz_zzey  Offline OP
"OCF across the pond"
Senior Member (100+ posts)
D

Joined: Jun 2019
Posts: 128
One chemo down, 2 to go.
One rad down, 32 to go.
One immuno down, 14 to go.

It's been a busy 24 hours!

Chin and neck area red and stinging. My team were meant to give me some cream to rub into the area and on my facial and neck scars, but they didn't. I've used pure aloe flesh from my plant to ease the stinging.
My dentist at the hospital was supposed to provide me with mouthwash, but didn't. I'm going to have a chat with my team to find out what went wrong. I was in hospital for the whole day on Monday and wasn't contacted (they make appointments and let me know where to go)


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 subtotal glossectomy neck dissection RFFR
33 doses RT Start 17th Sept '19
2x cispltin
Re: Home Time [Re: Dizz_zzey] #199087
09-17-2019 01:54 PM
09-17-2019 01:54 PM
Joined: Jun 2007
Posts: 10,409
PA
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,409
PA
I posted this on the wrong thread... SORRY!!!! Even though the Magic Mouthwash was discussed recently on another members thread I wanted to bring it over here to your own thread to continue any conversation on it so it wont take away for anyone elses questions.


Magic mouthwash (MM) is a combination of a few ingredients which can vary. The kind I used was made of lidocaine, Maalox** and Benedryl***. In the US only the lidocaine requires getting a prescription from the doc. Maalox and Benedryl are over the counter meds. Some patients get a different version of the MM, often nystatin is added to cure thrush. When you talk to your doc about MM, ask if this is something you can mix at home yourself. You may only need the doc to write a prescription for liquid lidocaine if Maalox and Benedryl are over the counter items. Im very sorry, unfortunately I do not know what portions of which item are to recreate the MM but your doctor or pharmacist may know. Ive used MM on and off for over 6 years my ongoing health issues. Sometimes pharmacies arent the right "type" of a formulary pharmacy and have sent me with my prescription to another drug store where they do make medication concoctions.

Another thing to mention about the MM is always swish it around in your mouth for 30+ seconds... I always tried to make it to the 1 minute mark, then spit it out. Even if you get a prescription for it and it says swallow it... DO NOT SWALLOW IT!!!! MM can create issues for patients by numbing everything so much as it goes down patients arent able to feel when they are choking, so whatever you do if you are able to get the MM, be careful and DO NOT SWALLOW it. Its always better to be safe than sorry.


** Maalox... an antacid thick liquid medication that coats the esophagus all the way down to coat your stomach, its used for minor stomach aches, gas, bloating, nausea (the mild kind, NOT what OC patients get!!!), diarrhea, etc.

***Benedryl.... another over the counter antihistamine thats used for colds and/or allergies, runny noses, watery eyes, scratchy throat, it helps alleviate swelling caused by an allergic reaction, hives

Hope this extra info helps!!!



PS... I dont mean to confuse anyone reading this, but Id like to clarify some feeding tube info. I wanted to further explain about US feeding tubes, your recent post said the UK has different feeding tubes than in the US. Im not sure what it was called in the UK but theres actually several different kinds here. in the US we have several different ones. The most common is the PEG tube which stands for Percutaneous endoscopic gastrostomy or sometimes called a G-tube. This type of feeding tube is surgically placed thru the abdominal wall into the stomach with a small balloon inside the patients stomach to hold it in place. Theres the nasogastric tube also called a nasal feeding tube or a NG tube. The nasal tube requires no surgery, its more of a temporary feeding tube not meant for long term use. The NG tube is a very thin tube that goes up thru the nose, down the throat and into the stomach. It can easily be inserted and removed at any time, its great for those patients who dont mind putting it in and taking it out or some will leave it in taping it to their face. Theres the J/G tube or some reverse it and say its a G/J tube?? Many feeding tube patients are not even aware of the 3rd kind the J/G option. The J/G tube is not normally the first kind of feeding tube patients are given. The J is for jejunostomy and the G is gastrostomy. is done surgically where the regular PEG tube goes into the stomach and theres a second tube inside that goes into the large intestine. The top of the J/G feeding tube has 3 "ports" with one going into the stomach and the second very tiny thin tube on another "port" that completely bypasses the stomach. This works best for people who have overly sensitive stomachs or had previous feeding tube complications. Many who have the J/G tube will use one port for meds and the other to take their formula in thru. The third port is for nurses using a shot needle to put something into the patients stomach or large intestines. The 4th kind is the MIC KEY button which is another type doctors normally do not offer their patients. Its small without the long tube so its much more comfortable than the bulky PEG or J/G tubes are. It comes with an attachment tube (for feedings) which pretty much turns it into the PEG feeding tube. Its just a little round disc (like the plunger holding the PEG feeding tube in place) with a plastic flip top lid thats inserted thru a small cut into the abdominal wall for the inner tube to go into the patients stomach. This type is preferable for children so they dont end up hurting themselves by pulling on the J/G or G tubes hanging out of their abdomens. The biggest downside to this type is it needs to be frequently replaced... at home by the patient and/or caregiver. Hope I didnt overload anyone with too much info!!! Feeding tubes can be problematic for patients and caregivers as they do not usually get the most attention after they are put in so too often patients and/or caregivers feel like their on their own to figure that kind of thing out which is NOT easy!!! Too many things can and do happen like clogs, nausea, not tolerating the formula, feeling too full/bloated are just a few of the issues patients can have with that kind of thing. But, it is a wonderful temporary tool (for most) to get the patient thru some rough weeks/months until they can eat more normally and maintain their weight.


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: Home Time [Re: Dizz_zzey] #199088
09-17-2019 03:58 PM
09-17-2019 03:58 PM
Joined: Jun 2019
Posts: 46
San Antonio, Texas
M
Mokie Offline
Contributing Member (25+ posts)
Mokie  Offline
Contributing Member (25+ posts)
M

Joined: Jun 2019
Posts: 46
San Antonio, Texas
Somewhere on this site Dizz I read where a lady’s husband carried a bottle of lubriderm with him to radiation therapy and slathered it on after every treatment. His wife said it really minimized his discomfort during his treatments. You could ask them if it’s OK.


SSC Lt sublingual tongue; Age 62
Positive biopsy 20June2019
Staging done 2 Jul : Stage 1
Quit smoking 15 years ago; not a drinker; no HPV
Pet/ CT 6Jul2019 : Negative. Not even the Lt tongue lit up.
Partial Glossectomy 22Jul2019
Re: Home Time [Re: Mokie] #199089
09-17-2019 05:16 PM
09-17-2019 05:16 PM
Joined: Oct 2012
Posts: 1,155
Toronto, Canada
G
gmcraft Online
Assistant Admin
gmcraft  Online
Assistant Admin
Patient Advocate (1000+ posts)
G

Joined: Oct 2012
Posts: 1,155
Toronto, Canada
John used Lubriderm. It was advised by the RO. We brought it to radiation and when he came out of the treatment, he put it on his neck where he had received radiation. It’s really good. Pay attention to where there are foods in the neck, such as the folds that for. When you’re looking down.


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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