| Joined: Nov 2014 Posts: 73 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2014 Posts: 73 | Hello everyone. I have been on treatment since 11/17/2014. I find it harder to swallow but can take in liquid and soft foods. I also have Ulcerative Colitus and need to take Lialda which are large. So I have been crushing them and eating in a pudding. My main complaints are the ear pain and a localized acid stomach pain. The ear pain feels like someone jamming a pencil in my ear. I am told it's nerve pain.Has anyone taken nerve pain meds which are successful?
Also why is the temp of 100.4 bad? To me that would normally not be high. But that's why I am here.
I have also noticed my urine has a red tinge to it. Is that just the chemo?
I want to thank you all here who have taken the time to answer my questions. You've been very helpful.
T4,N2,MO SCC of the BOT hpv+ Weekly Taxol/Carboplatin w/ 44 rad 73 GY Nov 2014 - Jan 2015 PEG tube feedings (Liquid Hope). Removed PEG 7/7/2015 Clear 4.9.2015 PET/CT H&N. 11mm low SUV nodule RUL on lung PET/CT 2nd PET 8.25.15 10+ numerous nodules bi later lungs 9.9.15 Lung biopsy SCC Org BOT Avastin and Torisel clinical trial 11/15-3/16 MDA Home 5/23/16 Pet scan 50% growth & +SUV Opdivo 6/2016 Synthroid 100 mcr Scan tumors shrinking Teeth decay 9/2016
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Gabapentin AKA neurontin works great for nerve pain. Ask your doc for a prescription for this in liquid form. Being in pain is not easy, its actually very detrimental to the patient. Get your doc working on somethign strong enough to manage the pain. Maybe the fentanyl patch would be a good option? Follow all directions exactly especially never bending, cut, tear, fold, rip or otherwise break the patch. Also do not take long hot baths or showers while wearing the patch as it will cause the patch to release too much medicine which can cause an overdose. fentanyl is the strongest pain medicine on the market and it comes in various strengths. It will take about 24 hours after placed for the first one to kick in and then you just put a new patch on every 3 days in a different spot. Very easy, and it works!
You must take in at least 48-64 oz of water every single day. Make sure you tell your doc about red urine. It could be blood in it??? Its especially important on chemo days to drink even more to flush the poisons out of your body. Chemo can be very hard on the kidneys which is why red urine is such a concern. ChristineSCC 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 | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Lyrica, aka Pegabalin, is a newer drug also used to treat nerve pain, but may be more expensive, needs pre-approval, or not covered by some insurers as Gabapentin is.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | Hi Larry - if you started treatment on or about November 4th that puts you exactly one year behind me. I estimated your start date from your post above.
I didn't have chemo, just surgery then radiation. So, I didn't have the symptoms you are experiencing, nor the need for the pain meds you are taking.
This post serves no other purpose than to let you know others made it through treatment just fine and you will too. Maybe one year from now you will be able to cheer up another new member.
take care, Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0. 11/13 start rads, no chemo 12/13 taste gone, dry mouth, 02/14 hair slowly returning 05/14 taste the same, dry sinuses, irrigation helps. 01/15 food taste about 60% returned, dry sinuses are worse in winter. 12/20 no more sinus problems, taste pretty good
| | | | Joined: Nov 2014 Posts: 73 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2014 Posts: 73 | Hello everyone. I had chemo yesterday 3rd one. I finally had the Fentanyl patch upped to 50mcr and it works. I still have pain but feel it is much less and managable. I am running out of breath, having a difficult time swallowing. I am to begin tube feedings very soon. The company is coming out. Has anyone else had trouble breathing? You guys have been great in helping know what to ask for. Thank you for your advice. I have less pain and am able to get out of bed more.
T4,N2,MO SCC of the BOT hpv+ Weekly Taxol/Carboplatin w/ 44 rad 73 GY Nov 2014 - Jan 2015 PEG tube feedings (Liquid Hope). Removed PEG 7/7/2015 Clear 4.9.2015 PET/CT H&N. 11mm low SUV nodule RUL on lung PET/CT 2nd PET 8.25.15 10+ numerous nodules bi later lungs 9.9.15 Lung biopsy SCC Org BOT Avastin and Torisel clinical trial 11/15-3/16 MDA Home 5/23/16 Pet scan 50% growth & +SUV Opdivo 6/2016 Synthroid 100 mcr Scan tumors shrinking Teeth decay 9/2016
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | There can be many reasons for this, but it's best to ask, see your doctor. Opioids can suppress the respiratory system, it does with me, making me out of breath, and can causes difficulty swallowing, tongue swelling, but with treatment that is a cause also. Then pneumonia can cause difficulty breathing, which I had several times, some were from aspirating. Dehydration can be another. If it's that bad, you can always go to the ER.
Good luck with the rest of your treatments, and tell your medical team.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | 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 | Any discomfort or especially anything new or different should be communicated to the medical team immediately. Breathing is essential to life and anything affecting that should be considered emergent or emergency care. The things that affect breathing are nerves, muscles, lungs and the brain. All of these require highly trained medical professionals.
From your post, I suspect you are not drinking very much water. Unfortunately, this is a must and not doing so only creates more problems.
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: Mar 2014 Posts: 31 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Mar 2014 Posts: 31 | larry6905: I'm going to join the chorus of folks telling you to report your breathing difficulty to your doctor. I adopted a policy of reporting everything to my doctor and letting him figure out if it was important or not. I had a bit of difficulty breathing for several weeks when the lymphedema first came into my life. So I told my doctor. Turns out my epiglottis was very swollen and a prescription for steroids for about 6 weeks put it right. Not being able to draw a breath was scary and I was glad the doctor was able to bring me some relief.
2/2014 SCC T4aN2bM0 HPV+ Tonsil/BOT 3/3/2014 PEG and port 3/10/2014 Chemoradiation therapy begins 260 mg Cisplatin x3, 2.12 Gy rads x33 4/23/2014 Final Cisplatin infusion 4/25/2014 Final radiation treatment 7/17/2014 PET scan. Lymph nodes clear. Primary tumor reduced both size and SUV (borderline hypermetabolic) so it's inconclusive. 8/2/2014 PEG tube removed. 11/24/2014 Saw MO, RO, ENT, and Head & Neck Surg. over past 10 days - all agree no recurrence but enhanced surveillance will continue. | | |
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