has anyone else experienced this??

Bud,

I had cancer on left side and had treatment to both sides and all around, kind of like a good sprinkler.

I had 3 masks, one for the ride home (just kidding).

Matt

welcome Bud, sorry you need to be here.  i have nothing to add, just wanted to welcome you to our family.  we will be here to cheer you on as you go thru tx and here to celebrate with you when you finish!!

God bless you,

dj

Sailor123 said:

Hi Bud:
I think its standard

Hi Bud:

I think its standard to have it on both sides.  Its also STANDARD to give every person despite the size of tumor, age, health etc. the same number of rads. (33)

It is a cookie cutter approach.  

If I could go back I would have stopped at 25 rads.  The doctors don't know how many rounds you need to kill the tumor so they give everyone the maximum dose and as you will learn most of the long term damage we sustain is from the radiation.  Many decisions are made in haste as we all want the cancer expelled as quickly as possible.  I wanted to quit after 25 but my husband strong armed me into continuing.  He was afraid for me but looking back, I should have listened to my instincts.  On the other hand, things turned out pretty well for me.  I don't have ANY taste and saliva production is low but aside from that I'm thriving for sure.

Its a judgement call, but there is no question that your personal cirmumstances are not being weighed in the treatment approach.  We all were given the same recipe for success.  2 or 3 chemos, 33 rads, diet of ensure/jevity.

Some of us had tumors 1/3 the size of others, but the recipe is always the same.

These things are tough to call.  I can only tell you my personal stance.  Most importantly make sure you get EXCELLENT nutrition and plenty of water and rest through your treatment.  Thats really the most we can do as we know so little about this process when we begin it.

Its so much to take in, but you will get there.  You don't have to know everything going in.  There are lots of helpful people here to answer your questions.  

I wrote a short piece about my experience under expressions.  You might enjoy it.  

Shirley

and tho the cancer was on the right side, they did both sides of my neck.....I had NPC, John (Skiffen) had tonsil, Matt had BOT....and it appears "both sides" must be some what standard for the rads. 

Shirley....when they say healing takes time....they aren't kidding.  I can't believe how much better my taste buds are now than they were 6 months ago....and I'm about 2 1/2 years out.....so the improvement keeps happening...it's just slow.

p

Sailor123 said:

Hi Bud:
I think its standard

Hi Bud:

I think its standard to have it on both sides.  Its also STANDARD to give every person despite the size of tumor, age, health etc. the same number of rads. (33)

It is a cookie cutter approach.  

If I could go back I would have stopped at 25 rads.  The doctors don't know how many rounds you need to kill the tumor so they give everyone the maximum dose and as you will learn most of the long term damage we sustain is from the radiation.  Many decisions are made in haste as we all want the cancer expelled as quickly as possible.  I wanted to quit after 25 but my husband strong armed me into continuing.  He was afraid for me but looking back, I should have listened to my instincts.  On the other hand, things turned out pretty well for me.  I don't have ANY taste and saliva production is low but aside from that I'm thriving for sure.

Its a judgement call, but there is no question that your personal cirmumstances are not being weighed in the treatment approach.  We all were given the same recipe for success.  2 or 3 chemos, 33 rads, diet of ensure/jevity.

Some of us had tumors 1/3 the size of others, but the recipe is always the same.

These things are tough to call.  I can only tell you my personal stance.  Most importantly make sure you get EXCELLENT nutrition and plenty of water and rest through your treatment.  Thats really the most we can do as we know so little about this process when we begin it.

Its so much to take in, but you will get there.  You don't have to know everything going in.  There are lots of helpful people here to answer your questions.  

I wrote a short piece about my experience under expressions.  You might enjoy it.  

Shirley

Actually, I think the standard is pretty loose....

Most on here have had a standard of 35 rads.., those that could tolerate the full course.. Most have, but a few needed to switch to a different plan.

Some facilities give less, not many more. Though I have seen a few that had less days, but doubled up rads sessions...

Same with chemo.., some have had no chemo, some one, two, three and more.., myself I had four.

The protocul that I had back a few years ago, several on here had the exact same, some less, and a few with different types of chemo or Erbitux..

There's one thing that is standard.., we all (or most) end up having one or three Tx plans.. Surgery, chemo and/or rads.., or some combination of the three.

As for you not having your taste back yet Shirley.., It took all of two plus years for me to completely get my taste back and nearly all saliva.. Matt is three years out and still seeing some improvement.. I'd be willing to venture, yours will continue to improve also...

its easy to second guess Tx once finished and successfully completed. Who knows the actual amount of Tx each of us really need. But the cookie cutter approach is one that has a fairly proven track record. As can be seen from the many survivors just on this site.

its rough for sure, and Im glad for every minute that I endured to be in the place that I'm at  

Thoughts, prayers and good vibes your way..

John

cancer on one side.  Radition on both.  Ditto to the treatment.  Seven weeks of chemo (1x per week) and rads (35).  The results on the studies keep coming out.  HPV+ means 80+% 5 year survival assuming no tobacco use.  Prior tobacco use-stats  not good.