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4 Weeks Post Rads #199542
11-30-2019 02:23 PM
11-30-2019 02:23 PM
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
I'm just over 4 weeks post rads and I've developed a salty taste in my mouth again. It's just like the one I had during rads. I honestly hope it'll go away as it's constant at the moment. Although I do have white patches at the back of my throat, so I'm wondering if its thrush as I believe that also gives a bad taste. I've got an appointment with my sarcoma team on Monday so will get them to check it out.

I've been sick a few times, but from trying to cough up mucus that had got stuck in the back of my throat. It can trigger my gag reflex.

I'm starting to flag a little bit this week. My positivity is waning. I'm back sleeping n the sofa at night as my mouth gets so dry I wake up coughing, so sitting up while I sleep eases that. Being sick a few times are calories I'm not getting back. Being frightened of choking has put me off food. The salty taste that i've not had for weeks is back. I feel like I'm going backwards. I have a horrible feeling my Christmas dinner will be ensure plus through my feeding tube. frown

Sorry to be negative, especially when I've been upbeat for so long.


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: 4 Weeks Post Rads [Re: Dizz_zzey] #199550
12-01-2019 06:13 PM
12-01-2019 06:13 PM
Joined: Aug 2019
Posts: 7
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Thankful Girl Offline
Member
Thankful Girl  Offline
Member
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Joined: Aug 2019
Posts: 7
Hey Dizzy,

I just got through Thanksgiving with VHC Boost. It bummed me out. I am 8 1/2 months post radiation. I'm beginning to get very anxious that I'll never get off of a liquid diet, for the most part. My doctors sure were correct when they said this is a slow........... recovery. I had surgery, 2 cisplatins and 35 rads. The main issue I have is saliva and my burning tongue. Although, I have noticed in the past couple of weeks that all of a sudden I will have spit and can lick my lips, then it will go away, but then happen again a couple of days later. Yay!! It truly does feel like we're taking one step forward, and two steps back. Every one of us is so different, I sure hope you progress quicker than me. A couple of things to help you in case you don't already know are VHC Boost 530 calories. I tastes really good and you don't have to drink as much, or put as much in your tube. God knows it's bad for our teeth. It's available on amazon. Another one are Xylimelts. They're pretty effective with dry mouth. Also on amazon.

Hang in there sister, I'm hangin' in there too.

Re: 4 Weeks Post Rads [Re: Dizz_zzey] #199558
12-02-2019 06:13 PM
12-02-2019 06:13 PM
Joined: Aug 2019
Posts: 31
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Barry Toronto Offline
Contributing Member (25+ posts)
Barry Toronto  Offline
Contributing Member (25+ posts)
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Joined: Aug 2019
Posts: 31
Hey Dizzy. We received radiation and chemo treatments about the same time - my treatments also were finished about a month ago (but I didn’t have surgery). Like you, I have been frustrated at the slow pace of recovery in my mouth (dryness, mucous, sores, pain, swallowing). My solid food intake has been pretty minimal. Absent solid food I have been having a tough time regaining weight, strength and stamina. All this is to say, I met with radiation and medical oncologists last week and they said I was doing really well. It sounds that despite your recent setbacks that you are also doing well. I don’t think it’s possible to recover from this scourge as quickly as we would like but stay positive (and patient). I think that a positive attitude will generally help with the pace of recovery.


Preliminary diagnosis of SqCC at base of tongue August 2, 2019.
Biopsy surgery on August 15
Confirmed sqcc from biopsy Aug 20 - hpv type 16
33 radiation treatments ended October 25, 2019.
3 (large dose) cisplatin treatments.
Re: 4 Weeks Post Rads [Re: Dizz_zzey] #199559
12-02-2019 06:25 PM
12-02-2019 06:25 PM
Joined: Aug 2019
Posts: 7
T
Thankful Girl Offline
Member
Thankful Girl  Offline
Member
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Joined: Aug 2019
Posts: 7
Hey again,

Just wanted to say I don't mean to be discouraging at all by sharing my slow progress. I apologize for that. I was just commiserating with you. I've read lots stories where OCF patients are eating within a few months. Besides the food issue, the rest of my life is pretty much back to normal. I still need to get a bit more energy back. It absolutely gets better!! Oh, another tip. When you're ready for it, use an electric hand held massager for your neck, shoulders, head and chin. Get one that really works muscles. My lymphedema is almost completely gone. It's amazing!

Take care,

Thankful Girl

Re: 4 Weeks Post Rads [Re: Thankful Girl] #199560
12-03-2019 09:29 AM
12-03-2019 09:29 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
Hey Thankful Girl,

You're not discourahing me at all, actually it's great to read your progress and know that I'm worrying over nothing. smile
I love your idea for the massager. My husband has decided to get hunt around for one for Christmas. Hurrah.
Yesterday I had a pep talk with my speech therapist and lead nurse on my ENT team. They both said that I worrying over nothing as I'm still way ahead of progress, I'm just pushing myself a bit too much, although they understand my drive to improve. They also reminded me just how much my body has been through an needs time to heal.

My energy levels are actually quite good, although they can be better. The weather here has turned cold and wet so I'm loathe to go outside. The warmth in the house has lured my inactivity, haha.

I'm so glad you're pretty much back to normality. I think once I go back to work then it'll help. Plus I find out next week if I can have my port removed. If it goes this month I'll be so happy. I still have immunotherapy but it's once every 3 weeks for the next 30 weeks, so I'm thinking I don't need it anymore. Fingers crossed smile

Last edited by Dizz_zzey; 12-03-2019 09:30 AM.

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: 4 Weeks Post Rads [Re: Barry Toronto] #199561
12-03-2019 09:33 AM
12-03-2019 09:33 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
Hey Barry,

Thank you for your message. My specialists are also really happy with my progress, they keep reminding me that it's marathon not a race with regards to healing. I just want to eat something warm! lol.
You sound like you're doing really well. Keep going fella smile


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: 4 Weeks Post Rads [Re: Dizz_zzey] #199568
12-05-2019 01:55 PM
12-05-2019 01:55 PM
Joined: Jul 2009
Posts: 1,397
Los Angeles
D
David2 Offline
Patient Advocate (1000+ posts)
David2  Offline
Patient Advocate (1000+ posts)
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Joined: Jul 2009
Posts: 1,397
Los Angeles
Hey Dizz - I'm so sorry to read about your problems. I can certainly relate, though I didn't have it neaaarrrrly as bad as you. But based on that experience I can assure you that things will improve. After my rads I was basically on the couch for 3 months (I was older so maybe that was part of the reason), and I don't recall eating anything solid until about this time of year... 6 months after the end of treatment. So you're already doing a whole lot better.

Hang in there. We're all pulling for you, and soon enough today will be a distant memory!
David


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 10 years all clear in 6/19 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
Re: 4 Weeks Post Rads [Re: David2] #199570
12-05-2019 07:38 PM
12-05-2019 07:38 PM
Joined: Oct 2019
Posts: 19
Boston, MA
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r0se Offline
Member
r0se  Offline
Member
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Joined: Oct 2019
Posts: 19
Boston, MA
Hey there,

Just wanted to check in! I am 6 treatments away from
finishing radiation, so I've been following your progress! Keep up the good work and keep us posted.

R0se


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