Saliva back

phillyboy

One year post radiation of pure hell and I just got saliva back. Doctor said it wouldn't happen. I did have faith and stuck with it. Taste not back but I am eating and I feel it coming. Those of you in similar situations keep the faith and pray. You have nothing to lose. Best wishes to all and good luck.

bugsyboy

Congratulations!

It took my tastebuds about three years to level out.  I kept trying and trying.  I'm four years out now and most stuff is back.  Congratulations.  Keep up the good work.

Bugsy

AnotherSurvivor

At 23 months post I have seen

At 23 months post I have seen wide swings in quantity and character of my saliva, but today it seems likely to be close to old normal without assistance from the saliva stimulators.   I wouldn't bet on that for tomorrow, and always travel with a small baggy of xylimelts.  Taste is functional, also seems to go thru swings, but is usually more stable than saliva.  My neck skin where I had my burns does the same.  Yesterday I was out in the sun without my neck tube and I'm paying for that today.  Eventually my neck skin will loosen, I will sag for a couple of days, things will recover and then the cycle will repeat. 

My ENT says recovery goes on until I am old enough the whole thing falls apart.  Tho improvements are slower now approaching the two year mark they do seem to continue.

The big thing is my weight was 187.3 this morning.  Acceptable range is 185-190.  I started at 230, wanted to lose, did it the hard way, and now religiously work to keep it off.  That seems likely to be a permanent battle.  I am slowly rebuilding muscle, but that is taking longer, and I now just accept I will never be as strong as I was before treatment, the consequence of losing 40 pounds.  But my blood chemistry is great, an old cholesterol problem seems to have gone, and my pulse and BP are the same as when I was 30 years younger.  Tomorrow the DW and I hit the road to hike and bike a couple of the national, state, and provincial parks here in the west.  Living in a van down by the river.  I spent Xmas 2017 on day 3 of a 10 day hospital stay in an ICU.  This is progress.

rrmartins71

I think I was pretty lucky

taste fully recovered in 4 months, and saliva 80% normal after 6 months, I was up and running 2 weeks after treatment ended. Very speedy recovery. Treatment, on the other hand, was living hell. 

donfoo

different for many

Glad you are progressing. Hang in there as your body is recovering a bit slower but good news so wait for more to return!

Dean54

Maybe I do have hope

I keep waiting for mine to get better (taste and saliva) as it's been maybe 9 months now and no signs yet except for a brief couple day period a while back. I'd say I'm back to where I started right after treatment so it IS really hard to think positive.

patricke

GREAT NEWS

Congratulations on getting your saliva back, that is great news!  Mine came back after 11 years following my esophagus being reconstructed. My docs were a tad surprised.  I was surprised, and oh so happy; I ,at last, no longer had to have spray bottles of Mouthkote with me everywhere I went.  Another surprise unexpected bonus was that the industrial grade viscosity mucus disappeared. Thus, you just never know what can and will happen correctively as time moves along. 

Patrick

Dennis from Kansas

hope

Great news,still waiting for saliva and a taste of normal.year and a half post treatment,thanks for giving hope

 

whoisjohngalt

Dean54 said:

Maybe I do have hope

I keep waiting for mine to get better (taste and saliva) as it's been maybe 9 months now and no signs yet except for a brief couple day period a while back. I'd say I'm back to where I started right after treatment so it IS really hard to think positive.

Dean, I know you are

Dean, I know you are struggling with this but please keep the faith, I'm pulling for you!

Dean54

whoisjohngalt said:

Dean, I know you are

Dean, I know you are struggling with this but please keep the faith, I'm pulling for you!

Thanks John

And for you also sir.

phillyboy

saliva back

Reacted too soon. Only partial saliva back maybe 50%. Comes and goes. Still need xylamelts and plenty of water. Disappointed that still no taste  but can eat eat anything including snacks. Didn't think you could eat much with partial saliva and no taste. Have nerve damage from radiation. Behind ear, spreading to neck and ending at arm. Neurologist has me on Gabapentin with a dosage increase after 2 weeks. Neck is bulging at surgery site and my Oncologist has me scheduled for a cat scan. Lastly I have an unknown allergy that is causing laryngitis , mucus  and cold symptoms. No fever.  My ENT thinks it is from radiation. In spite of these issues, I am trying to stay positive and be active as much as I can. Those of you that have issues from neck cancer never give up. It takes time and you may recover fully or even partially. Have faith.

momall25ofu

phillyboy said:

saliva back

Reacted too soon. Only partial saliva back maybe 50%. Comes and goes. Still need xylamelts and plenty of water. Disappointed that still no taste  but can eat eat anything including snacks. Didn't think you could eat much with partial saliva and no taste. Have nerve damage from radiation. Behind ear, spreading to neck and ending at arm. Neurologist has me on Gabapentin with a dosage increase after 2 weeks. Neck is bulging at surgery site and my Oncologist has me scheduled for a cat scan. Lastly I have an unknown allergy that is causing laryngitis , mucus  and cold symptoms. No fever.  My ENT thinks it is from radiation. In spite of these issues, I am trying to stay positive and be active as much as I can. Those of you that have issues from neck cancer never give up. It takes time and you may recover fully or even partially. Have faith.

Phillyboy, this sounds real

Phillyboy, this sounds real similar to what my husband is going through.  He has the pain from behind his ear, down the neck, and into his shoulder and down back.  He also has a bulging area above his scar site.  Crazy.  We're going to ask the doctor about it tomorrow. I hope you get better soon .... we're just starting.  He still has radiation to go through.

Drivingdaisy

Saliva & Taste

Congradulations to all those who have regained their saliva & taste.  More help to feel more normal & eat!  Mine worked entire time in fact taste intensified.  6 mo after treatment Salivary glands became clogged with saliva due to radiation.  Ducts were damaged.  Gone was the saliva totally after having it .  Had specialized surgery to open ducts which worked but what came out was So bad.  They called it Chemo Saliva, mucus, thick , nasty saliva.  Does nothing for dry mouth.  Products not helping, now taste buds changing & swallowing.  It is now 2 1/2 yrs later.  Eating is an effort especially fruits, salads, fish, so many foods taste funny or hard to swallow.  It’s been 2 yrs only getting worse.  Anyone run into to reverse saliva?  I am so frustrate, tired, body is rebelling, thyroid is gone.  Sodium issues so on salt pills all day long......yuck.  How can you go from doing so well to crash & Burn.  Reaching out for ideas.  Thank you.