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Linda,
Wishing you the best of luck with your appointment. Obviously a follow-up with MD Anderson is a different situation and I would certainly fly for that purpose, preparing myself by checking over the tips mentioned in this thread.
Lottie.


CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
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Linda- thanks for the suggestion about the humidifier. Yesterday was a particularly bad day in regards to the excess mucus. It won't stop! I constantly have my spit cup at the ready and last night was particularly bad. Part of my frustration is that I get a tickle at the back of my throat and when I try to cough, the sores on my tongue hurt. So, I do a half cough and then I start to gag! I'm a mess!
I had taken a nap in the mid afternoon and when I was heading to bed around 10pm, I felt tired. But after reading for a few minutes I felt wide awake and I couldn't sleep. It didn't help of course that I couldn't stop drooling!!! I was up for at least 3 hours and I was getting upset. And then your post about having the humidifier jumped in my head and I thought, well let's try it. I ended up taking a pain meds and after hooking up the humidifier, I was able to sleep! Whoo-hoo! I got in about 6 hours, so I should be good until after lunch. smile

Good luck with your travels!!


Kristen S.
Stage 3 SCC Surgery 2/18
35 radiation treatments-completed 6/18
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Denise- when did all of your mouth sores resolve themselves? I have one particular sore that's on the side of my tongue and it feels like it extends down to the floor of my mouth. It's the grand-daddy of all sores and I keep thinking that if this one would just heal, I'd be much better off!

Yes, being patient is the key.

I have used the Magic Mouthwash here and there but since I'm still using my PEG 100% of the time, I haven't used the mouthwash recently. I'm thinking that when my mucus settles down a bit and I'm ready to try eating orally again, then I'll refill my prescription and use more frequently. The mouthwash I have now expired last month. I used it the other day and it had turned a weird brown color. I think it's best to just get a refill! smile

Another question- how is your speech coming along? Have you had any speech therapy as part of your healing process? My speech was pretty good until the last week or two of rads. My speech now (3 weeks post rads tomorrow!!) is marginally okay. I find that I have to repeat myself more than once. I think part of the difficulty though is the mucus. Whenever I try to speak, it sounds like I have marbles in my mouth. And then all of a sudden, the flow of mucus erupts! You just have to laugh!!

smile



Kristen S.
Stage 3 SCC Surgery 2/18
35 radiation treatments-completed 6/18
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Thanks for sharing your concerns about the travel plans. Thankfully the trip is still just shy of 6 weeks away. I'm starting to feel a lot better week by week. As Christine says, it feels nice to wake up and feel less crappy than the day before!

I will definitely be prepared for different scenarios and I will be cautious. smile


Kristen S.
Stage 3 SCC Surgery 2/18
35 radiation treatments-completed 6/18
Joined: Mar 2018
Posts: 45
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Hello to the other Kristen S!

Thanks for the encouraging and supportive comments about my upcoming trip! Yes, I'm planning on keeping the PEG tube in and if I need it, it's there. If not, oh well. I've had it in since February so I'm pretty used to it by now.

Did you feel that your tube came out to early? Were you eating w/o any difficulty about 4 months post treatments? My oncologist said that most of his patients leave in their tubes for about 3-4 months post treatment. I'm okay with that!

Thanks for the warning about the sun. I've already have 1 squamous cell carcinoma and multiple basal cell carcinomas removed from various areas of my body, so I am very cautious about sun exposure. Somebody else had told me about the sun exposure and radiation. Also my arm and leg where I had grafting done. I was told that both sites should be covered up from any sun exposure for a year. When an oncology nurse told me at the beginning of this journey that I wouldn't really feel back to "normal" for a year, I didn't believe her. Now I do!!!



Kristen S.
Stage 3 SCC Surgery 2/18
35 radiation treatments-completed 6/18
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I just want to mention that when putting lotion/sunscreen, make sure you pay extra attention to where there are folds in the skin, e.g. in the neck where we bend our head. Don’t miss those places.


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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Hi Kristen, I am going to say that it was at least 5 weeks to where I didn't need anything for pain. My areas of pain were where the radiation was directed to on my tongue and the back of my throat, so swallowing was a problem. I think the back of my throat is still irritated because the mucous is still there. The tongue feels ok except when anything hot, spicy, tart, acidic or sharp hits it in the treated area. Even if you are not eating or drinking much, you might go ahead and get the magic mouthwash filled to be more comfortable now. Just swish it around and either swallow or spit. I really didn't have any problems with speech unless it was just too painful to talk during treatment. So, no, I did not have to do therapy. I do find that the dryness is a factor in speech. With no saliva, if I talk too much or have a long conversation with someone, I really need to have a drink handy.


Diagnosed 11/17 SCC right side of tongue
Surgery 2/18 Partial Glossectomy
Radiation 3/18 - 5/18
Clear PET scan 10/18
Non smoker, occasional alcohol use
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Hi Kristen S!
Glad to hear something helped....we need everything we can get! I’ll be so glad when my sores are completely gone and I have more energy. I’m not a sit around the house type of gal. It keeps me feeling positive when I get the gloomies. Ran into a distant family member whose dad was treated 8 years ago. He said he dad was riding motorcycles on Pike’s Peak today, which made me really happy.


Stage 3 SCC of tongue/floor of mouth. Originally Stage T1N0M0 but one pesky lymph node discovered in neck after resection.
Now T1N1M0
Surgery 2/16/18 at UAB.
30 Proton Therapy Treatments
Cisplatin Chemotherapy
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Thank you for the advice- will do!!!


Kristen S.
Stage 3 SCC Surgery 2/18
35 radiation treatments-completed 6/18
Joined: Mar 2018
Posts: 45
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Hi Denise- good advice on the mouthwash. I'll get it refilled and start using again. I'm at the point now where I'm only taking ibuprofen during the day and then before bed I take the oxycodone.

My speech is affected now because when I start to talk, mucus starts flowing out!! I also find that it hurts the tongue to talk. In time....

I actually woke up today and felt great! I've accomplished more today than I have in a week. But I'm starting to slow down because I don't want to overdo it. I'm enjoying this energy but will be cautious.

Your advice has been so valuable- thank you sooo much for answering my questions!!!


Kristen S.
Stage 3 SCC Surgery 2/18
35 radiation treatments-completed 6/18
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