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Hey Everyone #199971
03-24-2020 12:03 PM
03-24-2020 12:03 PM
Joined: Jun 2019
Posts: 182
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: 182
Well now, I've been on a bumpy journey. (Aren't we all still on one). I've been ill and not enthused with anything.
So way back in Dec I started to throw up, 3 times a day. I reduced my calories down to no more than 900 and would still be ill daily.
I slept on the sofa every night. I went through 5 weeks of dry mouth (day and night). I felt cold, lethargic, upset, you know...rubbish.

I went back to work, but kept falling asleep at my desk. My boss wasn't very helpful. (Luckily the above power are)

I had lumps in my jaw. One was nothing, the other was nothing after a biopsy. I now have no evidence of disease. (Only 5 years until remission)

Hospital wasn't very helpful with sickness, tiredness, weightloss etc. Kept wondering why I was being sick, why was I losing weight (I've lost 40kg since Jan 2019), why am I dehydrated, but nothing offered, just more nutrition, more ensure, more calogen (high fat 30ml = 100 calories) but up it all came. I even threw up 2 lots of anti-sickness medication. Nothing worked.

I had a swallow test. Sadly all the vomiting and no eating has given me dysphagia, plus my throat was swollen. Exercises and swallow liquids until I'm encouraged to try thicker liquids.Boo.

Then 2 weeks ago every time I tried to drink anything other than cool water, I would cough until I was sick. I couldn't use the G-tube as I threw up straight away. I ended up in hospital for a week after contacting my team and asking for help. I had 6 days of no food, only water and weak squash.

Turns up I had a rare reaction to the immunotherapy. Inflamed stomach and small intestine. No pain, just vomit and lots of it.

I'm home now, I'm on strong steroids and immune suppressors. Isolation for me. My thyroid (low for 24 years) is now lower. I'm getting better though. I can vacuum the stairs now. I can stay awake with only one nap during the day.

My taste has returned too! My mouth wants everything! I'm lucky that I can have onions, peppers, tomatoes , garlic (all raw and cooked), mild salsa, smokey chicken, guacamole etc. Only for taste then spit out as food gets stuck halfway. I'm putting 3 ensure plus and 3 ensure juice (220 ml = 330 calories) a day, in the tube but drinking full fat jersey cows milk (100 ml = 79 calories) as a milkshake, fruit juice, water, coffee, hot chocolate. I want more! So I'm returning to my old self. My swallow is a worry. I'll contact my team about trying creamy soup again for thicker liquid to aid swallow. I might even try a thinner smoothie to give me something to work with.

My scars are coming out well. I'm rubbing in thick lotion into my neck, shoulders and jaw to help movement (Physio showed me what to do). Even my speech is improving (not bad for not having a tongue. Miming to songs helps with movement, or badly singing on my own).
Minimal dry mouth. I wake up once in the night so the toilet and some water. I'm doing housework (only a little), I'm doing my physio at home.I'm getting used to my smaller body. I've even booked an all inclusive holiday to Portugal with my my sister in Oct. I've learnt that I'm brave to ask for help, but I wasn't firm enough to ask for it earlier, which has put me in a worse place swallow wise than before rads. I will get there again. I have taste buds and I want to use them.


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 glossectomy neck dissection RFFR
33 doses RT 17th Sept '19
2x cispltin
Re: Hey Everyone [Re: Dizz_zzey] #199972
03-24-2020 06:32 PM
03-24-2020 06:32 PM
Joined: Feb 2020
Posts: 34
Michigan, United States of Ame...
D
DavidUofMsavedMe Offline
Contributing Member (25+ posts)
DavidUofMsavedMe  Offline
Contributing Member (25+ posts)
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Joined: Feb 2020
Posts: 34
Michigan, United States of Ame...
Now that you have found out why you've been vomiting alot & it is being addressed, you can begin to consume more calories & recover faster. Hang in there!


The number of people involved in my care (@ a CCC) is humbling. Doctors, nurses, therapists, support staff, & of course, family. With everyone fighting for me to beat cancer the least I can do is fight back and win!
Re: Hey Everyone [Re: Dizz_zzey] #199973
03-24-2020 09:43 PM
03-24-2020 09:43 PM
Joined: Jun 2019
Posts: 57
San Antonio, Texas
M
Mokie Offline
Supporting Member (50+ posts)
Mokie  Offline
Supporting Member (50+ posts)
M

Joined: Jun 2019
Posts: 57
San Antonio, Texas
I wondered why we hadn’t got an update from you lately Jazz.
This sure wasn’t what I wanted to hear, but happy they got to the bottom of it. I’ve been there where you don’t what to complain and try to tuff things out, but we’ve got to advocate
for ourselves. Too often we let things go too long and make a bad situation worse for ourselves all because we don’t want to feel like we’re complaining or hoping it will resolve on it’s own. Do something fun now that your feeling better. Forget the cleaning!! Lol.


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: Hey Everyone [Re: Dizz_zzey] #199974
03-24-2020 10:27 PM
03-24-2020 10:27 PM
Joined: Jan 2020
Posts: 50
Los Angeles, ca
K
Kevster Offline
Supporting Member (50+ posts)
Kevster  Offline
Supporting Member (50+ posts)
K

Joined: Jan 2020
Posts: 50
Los Angeles, ca
So sorry for your ordeal but glad they sorted out what was happening. Glad your taste buds are coming back.


Stage 3 cancer of right side of tongue
Tumor: t2.
Lymph nose spread
Partial glossectomy and neck dissection (2/12/20)
Never smoker
Completed six weeks of radiation on 5/6/20
Re: Hey Everyone [Re: Dizz_zzey] #199977
03-25-2020 06:26 AM
03-25-2020 06:26 AM
Joined: Oct 2019
Posts: 31
Boston, MA
R
r0se Offline
Contributing Member (25+ posts)
r0se  Offline
Contributing Member (25+ posts)
R

Joined: Oct 2019
Posts: 31
Boston, MA
So glad to hear from you ❤️. Props for persevering through all of that. Vomiting and dysphagia are so disheartening - especially when you've been progressing. I remember trying to eat a bowl of mushroom cream soup after radiation. I could not taste or swallow it. I burst into tears. And vomiting is so awful...I couldn't eat anything during chemo and fainted at the doctor's office once. I'm really glad that you found the problem. Keep singing and drinking and tasting!!!!

Re: Hey Everyone [Re: Dizz_zzey] #199986
03-25-2020 08:33 PM
03-25-2020 08:33 PM
Joined: Sep 2019
Posts: 32
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Paan Offline
Contributing Member (25+ posts)
Paan  Offline
Contributing Member (25+ posts)
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Joined: Sep 2019
Posts: 32
Hello dizz,glad to hear they found the problem I hope you recover quick there are people like me need you here.I was so scared before my surgery and you gave me so much valuable info thankyou praying for you.

Re: Hey Everyone [Re: Dizz_zzey] #199989
03-26-2020 08:43 AM
03-26-2020 08:43 AM
Joined: Jun 2007
Posts: 10,489
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: 10,489
PA
Glad to see you update and hear you are doing pretty much ok, Diz!!! The stomach issues are something I struggle with almost every single day. I take zofran frequently which helps tremendously. After OC treatments are over, remember the recovery takes a LONGGGG time!!! All kinds of things pop up and while they're not anything as serious as OC, they can keep us down, feeling lousy. Glad you are on top of your health issues and doing what you can to improve.

Hoping you are taking good care of yourself and having a great day!!!


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: Hey Everyone [Re: ChristineB] #200005
03-30-2020 10:13 AM
03-30-2020 10:13 AM
Joined: Jun 2019
Posts: 182
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: 182
Thanks Christine. It was a rare side effect (only person in the trial) to have this stomach inflammation. Ahh well. I take lanzaprazole which helps with other stomach issues.

Well I've been doing well. My weight has been stable for 2 weeks now. I've not used the feeding tube in neatly a week. I'm mixing foods and ensures (dinner tonight is soup, ensure and ice cream). I'm hoping that a few more weeks of this will mean no more tube. Then, once isolation has lifted, I can go swimming.

I'm keeping safe at home during this awful time. I hope you all are too


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 glossectomy neck dissection RFFR
33 doses RT 17th Sept '19
2x cispltin

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