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#132440 04-03-2011 01:58 PM
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Thanks to everybody for such encouraging words this past week. I am starting week three of recovery tomorrow. Question: I was determined today to only swallow, not spit up, but the secretions are so goopy and sticky they stay in my upper throat. Should I even try to swallow them? The doc said they can't hurt me but they don't seem to go down. My throat still feels restricted, like it is blocking anything moving down. (Dead cells?) Also, at my last appointment I could not open my mouth wide enough for the doc to take a good look but told her I thought the thrush had come back. She gave me Diflucan. I have this floating patch on my tongue that won't come off. Not the same kind of pain as my first and second bouts with thrush. Can it present itself differently at different times. Some of you mentioned that week three usually sees the end of the sticky secretions. Do they just up and stop? Sorry for all the questions. Desperate to know what is going on with me. I must be healing, but I don't feel much change. Did go for a short walk outside. A cool New England spring day. -Michelle


SCC left tonsil, stage IV, HPV+, metastatic to one lymph node. Biopsy 12/23/10; tonsillectomy 1/13/11; DX 1/25/11; Peg in 1/28/11. Peg out 6/29. TX 1/31/11-3/21/11: 35 IMRT plus 3 Cisplatin. Pet-Scan 6/20/11 = CLEAR! Three years out, learning to live with the long-term side effects of radiation while reminding myself to feel blessed.
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I have been using a suction machine to pull the junk that is coming up from my throat. I don't know if it is all from radiation or from dry mouth or what but I needed the suction machine for my trach when I came home and I have kept it here to use pulling the junk out of my mouth. Works well!

Michele in IL


Female - 53 no smoke/drink
tongue Biopsy 8/2010
Surgery 9/21 for SCC left side tongue stage II. Prtl removal tongue/left side lymph nodes. All Clear
Radiation started 11/2, ended 12/17
Lymph node involved left side along with gum involvement 2/9 Fibular flap failed 2/22.
passed away 1/12/12
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Even if I wanted to, yuck, I could never swallow that stuff because IMO it lacked the part of the mucous that was liquid enough to mix with it to make it swallowable. Even 5 years out I still manufacture a very small amount of that stuff all throughout the day (strangely not at night) and I still "cough" it up and out.

As far as the rest of your questions....just give yourself time, you know "time heals all wounds"..... You just may be coming out of the tunnel which is when your recovery just begins and it may very well take all of 2 years for you to get to the point where you won't recover anymore and no one here can accurately tell you how you will recover so calm down and be patient and go with the flow for the next month or so and I'll bet looking back you will see some positive changes from today.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
davidcpa #132457 04-04-2011 12:40 PM
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Yes, you're right. Patience. Patience. Last night, toward early morn, I did feel a slight abatement in the secretions, both in texture and amount, and woke with a slightly drier mouth. I jumped out of bed, quite happy for the small step. I just have to let the demon thoughts go, like I am dying, I am not getting better because the cancer is still here. Let those thoughts go. Patience. I just started week three of recovery. Some of you and the docs say this week could bring noticeable improvement. Patience! -Michelle


SCC left tonsil, stage IV, HPV+, metastatic to one lymph node. Biopsy 12/23/10; tonsillectomy 1/13/11; DX 1/25/11; Peg in 1/28/11. Peg out 6/29. TX 1/31/11-3/21/11: 35 IMRT plus 3 Cisplatin. Pet-Scan 6/20/11 = CLEAR! Three years out, learning to live with the long-term side effects of radiation while reminding myself to feel blessed.
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That's great to hear, Michelle. I found the first 6 months of recovery just as hard and in fact in some ways harder than the radiation period itself. The dark thoughts are unavoidable. You're dealing with them the best way, I think, just letting them be... and letting them go.
d2


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 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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I had the same diagnosis and treatment you did. Finished mine Feb 27th 2009. I use a OroStretch from CranioRehab.com for mouth exercises. My dentist measured the opening of my mouth prior to treatment and had me exercising all during treatment. I did not know I would need to continue using it after tx. About a year later I noticed that I was having difficulty opening my mouth. The scarring of the muscles continued for me long after tx. I cannot open the same as before treatment but its much better. I still use the OroStretch daily.

DebraH #133157 04-19-2011 07:16 PM
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Try green tea - it dries my mouth up for ome reason! Weird I know! But it works and can't hurt!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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