| Joined: Sep 2013 Posts: 40 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Sep 2013 Posts: 40 | Today I am 8 weeks post tx. I seems like the roof of my mouth in the back and the back of my throat are taking forever to heal. It is still painfull to swallow anything more than liquid or very soft wet food. Even taking pills has become a challenge. They were easier to take a few weeks ago. I still have the PEG and would love to get rid of it, but I still use it regularly. Haven't been able to put any weight back on yet. Do I need to go to the hyperbaric chamber to help the healing process, or is this normal for some? Also the fatigue is awful, I really have to push myself to get going. Will this get better? Is this a thyroid problem?
Age 54 at DX 06/20/13 Left Neck Mass 07/11/13 DX SCC OC T0N2bM0 Stg IVa p16 neg. 08/09/13 Tonsilectomy and Adnoidectomy, Panendoscopy. Unknown Primary. Begin RAD 09/30/13 Cisplatin 10/01&22/13 PICC 10/21/13. PEG 10/25/13 to 1/24/14. Erbitux x 3. End 35 RAD 11/22/13 Clear PET 02/25/14
| | | | 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 | Your best answers are your doctor(s). Sometimes it's a combination of ailments like mucocitis, thrush, bacterial, viral infections, inflammation, that needs to be treated with different medications, some oral rinses, pain meds may be simililar. To check the thyroid a TSH is done, and should be at least 2x a year since chance of hypothyroid dysfunction can increase the further you are out from radiation. In addition, other tests should be done, monitored that may be effect by treatment, energy, organs, like creatine, Liver, D-3, RBC, WBC, Hemaglobin, B12, glucose, testosterone, and others. 8 weeks post treatment is still early. Radiation continues to work just as long as radiation does, and some cells take months to recover, and metabolism can change fighting cancer, repairing body.
I don't know if they would do HBOT or even be approved, but it's being used more often for radiation patients, under what circumstances, not sure all, but unhealing ulcers, osteoradionecrosis, prior to tooth extractions post rads, are a few, but they don't do it unless they know you are cancer free since HBOT can feed cancer. I need it, but have to wait until Chemoradiation is completed, an probably not until a three month clear scan.
Maybe see a nutritionist about getting adequate nutrition, hydration, which goes by our BMI, height, weight, activity levels, and others, so each person is different. The same with water, which basically comes down to half your body weightin liquid ounces, daily, if not more. There are on-line calculators that can give you an estimate, but our health care providers can answer best what your needs ate to repair, recover, which can be as much as 1gram of protein per pound weight, 1/2, and again they use nutritional formulas. Sometimes excess protein puts a stress on the organs, if they are already compromised. If the doctor approves, physical therapy can be useful to get you out of being de-conditioned, before jumping into a full scale exercise program. The YMCA has 11 week LiveStrong programs for Free throughout the country for cancer patients, if one is in your area.
I hope this helps.
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: Sep 2013 Posts: 40 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Sep 2013 Posts: 40 | Thanks Paul. Good luck with your ongoing treatment.
Age 54 at DX 06/20/13 Left Neck Mass 07/11/13 DX SCC OC T0N2bM0 Stg IVa p16 neg. 08/09/13 Tonsilectomy and Adnoidectomy, Panendoscopy. Unknown Primary. Begin RAD 09/30/13 Cisplatin 10/01&22/13 PICC 10/21/13. PEG 10/25/13 to 1/24/14. Erbitux x 3. End 35 RAD 11/22/13 Clear PET 02/25/14
| | | | 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 | Its pretty common to still have what you described above going on at 8 weeks post rads. Im sure you must be alot better than you were 8 or even 4 weeks ago. Recovery can be a frustrating time when you dont make progress as quickly as you feel you should. Everything will get better, it just takes a heck of a long time for some patients. Still focus on your intake with doing the daily minimums, that will help you heal. If you are feeling any worse or if in a month you still feel like this see your doc and ask about getting a full blood panel done including thyroid and testosterone.
Best wishes with your continued recovery! 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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Slow healing is commonplace everyone heals at a different rate radiation isn't like any other kind of burn, it not only does immediate damage but it has long lasting repercussions. I doubt at this point Hyperbaric dives are needed you are too close to the end of treatment still for it to seem like it is a real problem.
However, a few things you can do to help.
treat it like a wound. Ever cut your finger or scrap your knee? What do you do? Clean it bandage it and let it heal.
Same premise (without the bandage) Anytime you take something by mouth. Clean (brush teeth - using a mild toothpaste - like a children's toothpaste even - cuz minty adult stuff BURNS and you really don't want to irritate something already irritated) and rinse. Keep that lovely baking soda mixture too and use it in between to clean, and rinse your mouth out (the mixture is actually healing too) The idea is to keep it clean to facilitate healing. next - up your protein (iron) - I'm a veg head so I use a protein power to ensure I get my daily supply of protein.
Why? well protein (converts into iron) iron binds with O2, which facilitates HEALING (this is what a HBO dive does but it does it on a much faster/larger scale) Not enough protein/iron - not enough O2 transportation - poor healing.
MOVE - okay I know you feel crappy and fatigued... but MOVE - walk the dog around the block even once or twice a day - and that will increase your circulation, increase your O2 intake and therefore support/promote healing - more 02 to bind to that iron, and it moves faster to the area - if your circulation increases... force yourself. I'm not saying run a marathon... just don't lay on the couch all day either...
finally PATIENCE...
I healed VERY quickly post treatment - now they say it takes one month for every week you've had of radiation - that puts you at 6-7 months to feel OKAY. Now as I said... I healed very quickly however - it's almost three years out since I had my surgery (feb 4), and three months shy of my having finished the three year mark for rads (may 4) and guess what? I still get improvements monthly. And to be honest - it's almost double the time frame they suggest to even touch feeling - GOOD.
hugs.
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
| | | | Joined: Sep 2013 Posts: 40 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Sep 2013 Posts: 40 | Thank you Christine and Cheryl. I'm taking your advice. I went to see all my doctors this week. They said everything was going great. The mouth and throat will heal in time. Had the PEG removed, it was a life saver but glad to see it go. My energy level has improved quite a bit too. I have the PETSCAN scheduled in about 3 weeks. I feel better every day. We will see.
Age 54 at DX 06/20/13 Left Neck Mass 07/11/13 DX SCC OC T0N2bM0 Stg IVa p16 neg. 08/09/13 Tonsilectomy and Adnoidectomy, Panendoscopy. Unknown Primary. Begin RAD 09/30/13 Cisplatin 10/01&22/13 PICC 10/21/13. PEG 10/25/13 to 1/24/14. Erbitux x 3. End 35 RAD 11/22/13 Clear PET 02/25/14
| | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | I was a very slow healer post RT. My RO stated I was the slowest healer he ever saw. I agree with the advice given above and be patient Also, avoid food that is acidic, spicy, sharp or hard and hot. I would frequently get painful mouth ulcers often triggered by something I tried to eat. My RO prescribed various mouth rinses and eventually a medication called trental combined with vitamin E to promote healing. I eventually had HBOT (which did help) but that was about 2 years after RT.
Good luck and try to be patient!
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | |
Forums23 Topics18,168 Posts196,925 Members13,103 | Most Online458 Jan 16th, 2020 | | | |