| | Joined: May 2013 Posts: 11 Member | OP  Member
Joined: May 2013 Posts: 11 | I completed all treatments 5/10 expecting to feel better each day. Well I have thrash, so back on medicine for that(fluconazole), along with anti nausea(ondansetron), saliva stimulator(pilocarpine), & Zantac.
Swallowing is so painful I was instructed to take a pain medicine.
What is going on? I want to get better.
I have not eaten in five weeks. When should my taste buds come back and my saliva?
1/31/13 CAT scan right tonsil, thyroid, lymph node,brain 2/5/13 MRI brain-no tumor  2/15/13 surgery,biopsy,removed 1/2 tonsil. 2/28/13 PET, diagnosis Oropharyngeal cancer stage IV 3/12/13 PEG 3/19/13 chemo(7 total) 3/22/13 radiation(35 total) 5/10/13 last treatment 7/29/13 2nd PET scan- CLEAR!! 10/28/13 PEG removed smoked 20 yrs ago 54 | | | | | 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 | Patricia,
It seems like you are experiencing about everything you should right now. I don't think everyone gets thrush...just everyone I know! It is in our digestive system and opiates affect the immune system which could explain it for some but any type of sugar will feed yeast as well. Thrush=candida=yeast.
Many people opt for Fentanyl/Duragesic patches for the intense throat pain. They are time release and you only have to change them every 5 days.
More importantly, you need to start eating again. Things will return soon...it is just different for everyone. Hang in there it will get better!
Ed
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: Feb 2013 Posts: 78 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Feb 2013 Posts: 78 | Everyone is different and heals at a different rate, but I've found I'm able to eat softer/wet foods now. I'm 6 weeks out of radiation. Things started to improve ~2 weeks out of radiation for me and continued to improve as I was able to reduce the medicine I was on.
It takes a long time for your body to heal and each day there are only miniscule improvements.
For a lot of people, they begin to see light at the end of the tunnel after 2 or 3 weeks post treatment. Radiation has a delayed impact on the body, so effects are not felt immediately. I have to keep looking back where I was at the end of treatment now to see how truly far I have come to keep myself sane. It's frustrating but it will get better.
Last edited by AndrewL; 05-15-2013 04:44 PM. Reason: clarity
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: 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 | As I mentioned in your other post, it will be about 3 weeks after rads before you begin to have some better days. Recovery can be a painfully long and drawn out process. A complete recovery can take a full 2 years. Most patients will begin getting their sense of taste back after about 6 weeks.
You MUST get nutrition! You will not recover and end up hospitalized for dehydration and malnutrition if you dont take in at least 2500 calories and 48 oz of water every single day. If you cant eat, drink! Get some Boost of Ensure and force yourself to get those down. If you are doing that badly, ask your doc for a nasal tube to get you thru the next couple weeks. At the very least ask your doc to write a prescription for hydration so you can at least get fluids.
If your mouth hurts too much to eat, ask for a prescription for magic mouthwash. Ask the doc to up your pain meds if you are in pain. Being in pain will not help you to recover.
I know it is a very hard time for you right now. It really will get easier very soon. Radiation continues to work for a few weeks after finishing treatments.
Hang in there!
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: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Mar 2013 Posts: 421 Likes: 1 | Hi Patricia,
I'm sorry you're hurting. Unfortunately, you're feeling pretty much as you should be.
I'm 3 weeks post treatment today and I'm still hurting pretty bad. I haven't had any food by mouth since April 23rd. With the exception of water, I'm getting all my nutrition and hydration through a PEG (which I had to have put in the last day of treatment). I've been on narcs for pain for months now.
Fatigue has been the biggest challenge. Even the smallest of exertion wears me out. It's getting slightly better but it's still a big obstacle.
On the positive side I never lost my taste buds so I can taste but unfortunately it hurts too much to eat ~lol~ My sense of taste and smell have become over sensitive. I tried a sip of chicken broth the other day and I ended up vomiting. Smells that I normally like are grossing me out. My partner and caregiver made a wonderful seafood and pasta dish for herself and I ended up having to go upstairs and close the bedroom door because it was making me nauseous.
Saliva has vacated the building for the most part since about week 4 of treatment. I'm getting a little bit back but it's thick. The mucositis has eased up a lot and I'm grateful for that.
Hang in there! Make sure you hydrate as much as you can and get nutrition into you or you could end up in the hospital. Sleep when you can. If you can, get up and at walk around. Even if it's back and forth in the room. Any tiny bit of exercise is beneficial. I'm finally at the point of going shopping and walking around the market. It exhausts me but I know it's doing me good.
You should start to see and feel some minor improvements by the 2nd week out.
Positive thoughts and prayers
"T"
Last edited by fishmanpa; 05-15-2013 08:32 PM.
57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | The first 2 to 3 weeks POST TREATMENT are usually the worst for everyone so in a gruel sense you are normal. Most of us finally walk out of the tunnel in our 3rd week post Tx and keep in mind your recovery from this Tx can take every bit of 2 years so even when you think you are out of that dark tunnel you still may have bad days mixed with good ones until the bad days slowly disappear.
Be patient.
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.
| | | | | Joined: Nov 2012 Posts: 17 Member | | Member
Joined: Nov 2012 Posts: 17 | Hi Patricia,
Eric finished treatment on 12/31/12 and his experience was very similar to yours. He was greatly discouraged when after two to three weeks post treatment he still didn't see or feel much improvement. His only nutrition was delivered through his PEG tube because his throat was so sore. He was forced to be patient and trust that the improvement so many people felt after two weeks would soon come to him....and it did. We all want a definite timeline of when the bad goes away and the good arrives but everyone is different. I'm happy to report that Eric is steadily improving....we try to celebrate the baby steps. Hang in there!
Kat fiance/CG to:
Eric: age 57
DX 10/19/12, HPV16+ SCC stage IV lft tonsil, BOT
nonsmoker,casual drinker
TX 11/5/12 Cistplastin wkly x 7, IMRT x 35
PEG placed 11/9/12
ALL CLEAR PET SCAN - 4/16/13
PEG removed - 4/29/2013
| | | | | Joined: May 2013 Posts: 11 Member | | OP Member
Joined: May 2013 Posts: 11 | Ed,
Thank you! Almost thrush free. Tomorrow is last day of medicine. I am concerned my Dr will put me back on Clorimazole lozengers. Previouly, they made me sick. I should not stress over this, it will clear by tomorrow, right?
May I ask, have your taste buds and saliva glands come back?
Patricia
1/31/13 CAT scan right tonsil, thyroid, lymph node,brain 2/5/13 MRI brain-no tumor 2/15/13 surgery,biopsy,removed 1/2 tonsil. 2/28/13 PET, diagnosis Oropharyngeal cancer stage IV 3/12/13 PEG 3/19/13 chemo(7 total) 3/22/13 radiation(35 total) 5/10/13 last treatment 7/29/13 2nd PET scan- CLEAR!! 10/28/13 PEG removed smoked 20 yrs ago 54 | | | | | Joined: May 2013 Posts: 11 Member | | OP Member
Joined: May 2013 Posts: 11 | "T"
Thank you for the encouragement! You are so fortunate to still have your taste buds. I believe mine will return, along with saliva. I have to believe!
I wanted to pass on a medicine that will increase saliva, Pilocarpine 5 mg.. The problem for me is since my regular saliva glands are not working right now it produces that terrible thick mucus. I am so tired of medicine I opt out for now. Maybe I should try one a day. During treatment I took four, but no mucus. That only came when treatment ended.
I understand about sensitivity to smell. My husband is anxious to be able to make coffee in the house again! However I am much better then 3weeks ageo. Just the mention of some food made me sick.
I guess you are right , baby steps!
Prayers, Patricia
1/31/13 CAT scan right tonsil, thyroid, lymph node,brain 2/5/13 MRI brain-no tumor 2/15/13 surgery,biopsy,removed 1/2 tonsil. 2/28/13 PET, diagnosis Oropharyngeal cancer stage IV 3/12/13 PEG 3/19/13 chemo(7 total) 3/22/13 radiation(35 total) 5/10/13 last treatment 7/29/13 2nd PET scan- CLEAR!! 10/28/13 PEG removed smoked 20 yrs ago 54 | | | | | 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 | The thick mucous is part of the first few weeks after finishing rads. That thick gunk usually will be replaced at around a month post rads with dry mouth. Unfortunately you can expect the dry mouth to become worse soon.
Pilocarpine will help with saliva, but it also can make you sweat.
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 | | |
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