Im a little confused.

ponderit

I was diagnosied with stage 4a tonsil cancer with two lymph nodes locally. I did 7 cisplatin and 39 rads. The confusing part is I came out of it almost damage free. I did have a burn around my neck which lasted about a week. I have some thick mucus but not like some are talking about and my mouth is a little dry. However that is it. I am due for my 6 month petscan in November. One of the lymphnodes are there but it has moved drastically up into my neck where you can almost not feel it anymore. The radio onc and the ENT said that we will wait to see what the Petscan says to see if I need surgery and the medical onc said I was free of cancer.  I am confused about the difference in opinons and confused as to why I am not having the many side affects most here seem to be having. Do the side effects come later? 

In addition I was in a lot of pain from my back issues prior to the cancer diagnosis. I wasnt able to get adequate help in relieving the pain since I live in Florida and they are very strict on issuing controlled narcotics. It wasnt until I got the Dx of cancer that I was able to get some Fentnyl patched. It changed the quality of my life dramatically, however now that I am out of treatment that option is not available to me anymore. Any suggestions?

Skiffin16

Welcome

I was STGIII Tonsils and a lymphnode, HPV+...

I had three cycles (three weeks each cycle) of Cisplatin, Taxotere and 5FU.., nine weeks.. Then an additional seven weeks similar to you.., weekly Carboplatin, and 35 daily rads..

I too suffered very little during treatment.. I did peel some around the radiation site.., and it was sore when eating and drinking.., so I opted for liquids mostly. I did lose all taste and saliva, but it all returned eventually.

As for your onco..., I really can't understand how they can conclude you are cancer free after treatment.., with no scans and most don't really give you that statement until 2 years or most post Tx..

The Pet may, or maynot light up, depending on if you still have something going on.., or just residual damage that hasn't completely healed from the rads.

Enjoy that you had it realtively easy.., some do, most don't.. That's where the ole, "everyone is different" comes into play...

I too am in Florida...

Not sure on the pain that you were having before, and now and if that's related to your H&N cancer..

BTW, I have been given the all clear as well... But mine was five years post Tx..

I am now over six years post and doing well.

Best,
John

ratface

Skiffin16 said:

Welcome

I was STGIII Tonsils and a lymphnode, HPV+...

I had three cycles (three weeks each cycle) of Cisplatin, Taxotere and 5FU.., nine weeks.. Then an additional seven weeks similar to you.., weekly Carboplatin, and 35 daily rads..

I too suffered very little during treatment.. I did peel some around the radiation site.., and it was sore when eating and drinking.., so I opted for liquids mostly. I did lose all taste and saliva, but it all returned eventually.

As for your onco..., I really can't understand how they can conclude you are cancer free after treatment.., with no scans and most don't really give you that statement until 2 years or most post Tx..

The Pet may, or maynot light up, depending on if you still have something going on.., or just residual damage that hasn't completely healed from the rads.

Enjoy that you had it realtively easy.., some do, most don't.. That's where the ole, "everyone is different" comes into play...

I too am in Florida...

Not sure on the pain that you were having before, and now and if that's related to your H&N cancer..

BTW, I have been given the all clear as well... But mine was five years post Tx..

I am now over six years post and doing well.

Best,
John

Gifthorses

Gifthorses should be ridden wildly until they stop walking. Leave it there and enjoy the great news, six months will come around soon enough. More than likely the doctors see a positive response to the treatment.  The shrinking of the lymph node is a classic sign. Six years and still riding here! All the best and welcome to the Board.

phrannie51

Welcome to this great forum!!

My thinking is that your ENT and the RO are waiting for the PET scan before they pronounce you clear...chances are you are, but I don't recall anyone telling me I was fine till after the PET was done. 

I thought I slid through treatment easier than most, too....I had a feeding tube, but didn't use it until I was getting adjuvant chemo....I didn't get any of the mucous because they were giving me Amifostine to save my saliva glands, and though I had horrible mouth sores, I never really had a sore throat.....I felt guilty sometimes.

As for your back....you almost have to go to an Ortho or at least a GP to get a referal....probably get to a root cause of the pain so you don't have to just treat symptoms with narcotics??

p

debbiejeanne

hello and welcome to the

hello and welcome to the family!!  not all people suffer with the full gammit of side effects.  so, count yourself blessed and start living it up!!  it is too bad we can't all be that lucky.

God bless you,

dj

wmc

Welcome to the H&N Group

Welcome to thr group, an sorry you need to be here. As others have said, don't look a gift horse in the mouth, you just drew 3 cards, and got the inside straight. I'm stage 3 severe bullous emphysema, but I have a 98% O2 saturization [I do get short of breath] so I asked my doctor how can that be? He said we both have seen your lungs and that should not happen and you smoked for 42 years, but it is. We are not going to question it, just be greatful it is, because you should require oxygen most all the time, but don't. Some side effects do come later to the ones that had some during treatment, so you may never get any. Just be thankful.

Like John [skiffin 16] most doctors will not say you are cancer free until 5 years and some have gone as low as 2 years. My tumor was just above my vocal cords and they removed all of my larynx, so they got the tumor, and a lot more. I'm just at two years next month and my doctor knows it is all gone, but won't say I am cancer free until I hit five years. I get NED [No Evidence of Disease]

 

As for the pain and the Fenynyl, that is hard to be on and can only be done through a pain managent doctor. Good luck with that. I have bone spurs in my neck and on both sides, one presses on my nerves and the other side presses on my esophagus when I swallow the food hits it. I had a neck dissection on both sides to remove lymph glands as a percaution. they took 48 on left and 38 on right side. I get Norco and muscle relaxers for pain and so I can turn my neck close to normal. Hope this helped, and remember you were a lucky one and just be greatful..........

Bill