| | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I tried a little cider last nite. It is a job without a jawvbone on the bottom to help keep your mouth sealed for juices . You have to get used to having a wet shirt and a stomach that feels like a waterfall but heck who cares. The easiest I tried was strawberry banana nuice and this cider was the one that causes the most pain in the mouth. But hey, pain is a part of our lives.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Forgeo the whole name for the glycol---- it is Polyethylene Glycol 3350. Sorry about that.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Aug 2013 Posts: 144 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Aug 2013 Posts: 144 | Wow thank you all for your timely advise, But am happy to report I had a poo! lol Yes this morning I woke up with a strong urge to go and was half asleep went to the bath and had a great normal movement. What I think worked is I decided to up my dose of softener to 3 tabs 2 times a day. I don't have to worry about my water intake because I have to use 500 ml just to take my morning meds. and more meds throughout the day. Hey PaulB, I sure am glad that I had a movement before I read your post above, sounds scary. Again thanks guys. Feeling really good this morning, Shawn U.
. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
| | | | | Joined: Apr 2013 Posts: 92 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2013 Posts: 92 | Just chiming in because during treatment I went 2 weeks 2 separate times and it is not something I want to relive. I use OTC Miralax. If I don't go a day two I start adding it to my water everyday until things are back to normal then I may back off for a few days. Luckily, as long as things are not backed up to bad this works for me, I am still on narcs so this is something I still do now.
AGE 38 10-2012 thru 3-2012 swollen lymph node,painful jaw and ear,2 antibiotics,X-ray,CAT scan,needle biopsy,scope, no answers
3-4-13 tonsillectomy and selective neck dissection, DX R tonsil SCC,METS to 1 lymph node,BOT,HPV+, stage IV
TX 35 RAD,3 chemo cisplatin/Taxol started 4-8-13
rad end 5-29-13
| | | | | Joined: Feb 2013 Posts: 78 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Feb 2013 Posts: 78 | I had some significant issues with this and food not digesting quickly and leaving my stomach. Very important to get it resolved as it can combine with feelings of fullness and nausea to make for a inability to eat and significant loss of weight. Its great you are feeling so well. I felt terrible but better to nip it in the bud before it becomes an issue. From most gentle to most aggressive  senna colase miralax magnesium citrate (didn't use, but heard of it) lactulose (also called generlac) - the heavy guns
Last edited by AndrewL; 09-17-2013 06:51 PM.
Andrew
age 25
early 10/12 - enlarged lymph node area
01/13 SCC of L tonsil, L BOT, 2 L lymph nodes
stage IVa, T2N2bM0, HPV+
2/13 2 doses cisplatin big bag, 2 doses weekly cisplatin + 35x IMRT
4/13 TX finished
7/13 PET/CT - NED!
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | I ended up with a small intestine diverticulum. It was horrible but resolved. With radiation to the chest and neck the nerve that controls stomach emptying gets damaged and results in gastroparesis anywhere in the digestive system it often between the stomach and small intestine.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Glad you're better. I remember the misery well. Tried everything without much success until my RO's nurse suggested buying some rubber gloves. Not pleasant, but gets the job done in a pinch. So to speak.
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 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Aug 2013 Posts: 144 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Aug 2013 Posts: 144 | the problem has resolved with the help of suppositories and stool softeners keeping it at bay for now. My pain is getting worse so a up in my pain meds has been made. so hears hopeing that I continue to poop daily. thank all of you for the advise.
. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
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