Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Annette,
I am reposting what I felt like 4 months post Tx and 5 months post Tx below. I hope it may be helpful. As far as the tongue pain, she may have thrush which her docs can treat with diflucin.
I am now 10 months out and my taste is almost 100% back; my dry mouth is probably 90% normal and I take a daily thyroid pill but have no symptoms. Otherwise I am back to doing EVERYTHING I did before this whole mess started. I did a 40 mile bike ride this am and I feel as if I could do another tomorrow.
Here's the 4 and 5 month post:
One month ago (duh) I posted "How I am 4 months post Tx" and I didn't expect to give an update so soon but something has happened to change my mind. I will first start with the 4 month post for those that didn't see it:
Today marks the end of the 4th month after completeing my Tx and I thought it would be useful to others to post my progress.
Taste-I have almost all my taste back. I would rate it 9 out of 10.
Hair on the back of my head-Beginning to grow back.
Weight-Lost 35 pounds and have regained 5. Not sure I want much more back.
High frequency hearing loss-Was tested at Moffitt and they confirmed permanent HF hearing loss caused by Cisplatium. MO wasn't so sure and said to wait. Either I am getting use to it or it has slightly improved.
Mental capacity-Fully recovered or I'm worse off than I think. LOL
Physical-Muscle strenght 7 out of my 10. Haven't exercised like I use to due to dry mouth.
Stamina-Am able to almost work as much as I use to. Work 9am to 7:30pm. Use to work till 9pm but I am pretty tired by 7:30. Can't keep my eyes open by 10 to 11pm.
Turkey chin-Gobble, gobble, still have it.
Dry mouth-This has been the worst side effect to deal with by far. Not in pain but in affecting quality of life. Just in the last 2 weeks I have noticed a slight change for the better. It's hard to describe but it has improved. I would rate this 9 out of 10 being the worst.
All the other side effects I was dealing with at the end of Tx went away around the 3rd week post TX. Those being: nausea, throat pain, constipation, and maybe a few that I can't even remember now.
All in all I am very pleased with my progress especially considering the way I felt at the end of my Tx and I hope that others who are currently in or recently completed Tx will find this useful.
That was one month ago.
As I said I wasn't planning to followup so soon but just in the past 2 weeks something has improved with my dry mouth. I say something because it's hard to define BUT it has made a great improvement in my eating. I still sip water throughout the day but I don't wake up during the night with mouth related problems any more and my eating has taken a hugh turn for the better. I even look forward to meals now as I am beginning to try some of my old favorites that I had given up on. For instance, I ate a small thin crust pizza by myself the other day (well not all the crust) and I even ate a whole slice without having to swallow liquid. I find myself eating almost like normal, I mean taking 2 or 3 fork fulls before I feel the urge to drink. I don't think my taste has improved but that dry mouth crap has.
It's really hard to describe but something has happened and I wanted to share this improvement so that others may be on the lookout.
Please understand that her body was taken to the brink of death during Tx and the recovery will be a slow process but on the other hand 1 year out of her life is a mere bump in the road she has traveled.
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.
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