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First check up following Rads/Scan ?

PJ47's picture
PJ47
Posts: 349
Joined: Sep 2013

Had first check up following rads; throat feel, nasal scope and met local rad/onc.  Seems C21 R/O does not have many follow up appointments, hmmm. They had time to see me before treatment started...

Anyway, he said all looks great!  Also liked his + outlook.

Now for the usual confusion about best practice regarding PETs, CTs etc.  My original R/O said have one at 8 weeks, which I questioned due to reading about false positives and then they came back and said do it at 3 months.

My Otolaryngologist at Vandy said not until 6 months, and the new R/O said 3 months is good.  So back to 2 out of 3 Docs say...

Guess I will go with 3 months+ unless the group disagrees?

FYI: Had my first cold/sinus infection since surgery and treatment which was also an adventure.  Can't hock anymore to clear out mucous, so have been using saline solution in Netie pot 3 X a day so I can breathe.  Just discovered Alkolol which is an interesting old natural remedy with eucalyptus and other ingredients in it.  It is supposed to break up and thin the mucous and it is actually working!  Yes!  It is very strong and I can only ue it at 1/3 strength, but it really helps.  Had difficulty finding it but one CVS had it and Rite Aid had one bottle left.  

Glad to have some good news to share.  I can eat most anything even popcorn.  However, taste buds are still lacking or hypersensative.  Had dinner at my fav Thai/Chineese restaurant tonight.  The egg drop spinach soup was good as were the pot stickers.  I boldly went where no head and neck scc patient should go and tried a smidge of hubby's double green curry tofu and rice.  Had to leave the table quickly as I sarted gaging and coughing from the spice which he ordered the mild I might add.  I used to eat it all the time B TORS/RADS.   Do not know I it will ever happen now.  Do not like to spending half the evening in the ladies room, having people check on me, and stare when I return to eat.  Good grief, will I ever learn?

Thanks in advance for advice, wisdom and support,

PJ

jim and i's picture
jim and i
Posts: 1759
Joined: May 2011

Glad this first report was positive. As far as CT/Pet it seems doctors vary from 3-6 months. Jim's was 3 months.

Whenever you get it I pray it is NED

Debbie

CivilMatt's picture
CivilMatt
Posts: 3264
Joined: May 2012

PJ,

Your check-up sounds good and your scan will confirm this.

Practice eating the spicy condiments at home first.  When you are successful at home, hit the road.

When I go out for a nice juicy hamburger it (on average) takes me 4 to 5 glasses of water and ice-tea.

Keep experimenting,

Matt

PJ47's picture
PJ47
Posts: 349
Joined: Sep 2013

I would try thai foods at home, but have never been able to master them.  I think you have an excellent idea though, much less embarassing to have a "melt down" in private.  Have not tried a hamburger yet.  Working on homemade chicken soup this week.  The popcorn, any bread, crackers or chips all have numerous swigs of water or rice milk in order to get "er done".  

Let's see 4 or 5 classes of water and ice tea, guess you make your fluid intake quota for the day with that burger!

PJ

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

Same boat, I had to start out bland and move to spides, manages cinammon and salt, pepper but hit a skid at pickle relish, now past pickly relish and like you and Matt said never have I gone through so much water in my life - starting out almost every bite was with a sip of water, now I can eat some foods without water every bite -keep moving forward - and isn't it great to eat chinese food again!  When we first got takeout I ate two pieces of shrimp and the broccoli only now I can eat it all - by the way veggies in the wok without spices seemed to have flavor to me, then you can add just a little spice as time goes on

congrats on the good news and keep positive moving forward, thinking good thoughts your way

Steve

Hondo's picture
Hondo
Posts: 6136
Joined: Apr 2009

Try using Alkalol in your Sinus wash you will be amazed. You can get it at Walgreens or CVS just under $10. Buck. It will help to keep your nasal clean and keep you from any infections and keep the Mucus down. It will take time before you can eat again the way you once did, just remember your new normal might be a little different then what it once was.

 

Take Care

Hondo

hwt's picture
hwt
Posts: 2143
Joined: Jun 2012

When you go for that first hamburger, use a cut with high fat content. I still have difficulty eating a burger out if it's sirloin or chuck, too dry. Anxious for my 1st burger, my husband got me a fast food one and ran it though the blender, bun. onions and all. Satisfied the craving but my husband said it was too hard to clean the blender afterwards so I moved on.  If you hit upon something too spicy, try milk to calm an angry mouth. I asked the pharmacist for a small empty medicine bottle and carry a bit of Magic Mouthwash and plastic spoon in a baggie wherever I go. Kind of a security blanket. 

PJ47's picture
PJ47
Posts: 349
Joined: Sep 2013

moon and do not crave one.  I do crave Itallian food like eggplant parmesean, gnocchi, and a good spinach calzone, but tasting them now is not even close to what they used to taste like.  Dissapointing.  

I also love spicy Thai curry and Chinese food and obviously will have to put a hold on these cravings.  My sweet taste buds are the most recovered which I am concerned about as I do not want to over do it with sweets.  I can taste salty things now and just tasted a carrot for the first time in months.  

Since the sinus infection follwoing the cold and not being able to smell much, it seems the taste buds are not working as well this past week  or perhaps it is 2 steps back time?

Like your idea of carrying MM in a small medicine bottle for emergencies.  I guess our throats are raw for a long time from the radiation.

 

PJ 

PJ47's picture
PJ47
Posts: 349
Joined: Sep 2013

The Alkalol has worked wonders overnight for me.  It really broke up the mucous from my sinus infection.  Walgreens where we live has "stopped carrying it." It is a great thing to know about.  I think my new normal will mean a lot less spicy food for a long long time.  Thanks,

PJ

hwt's picture
hwt
Posts: 2143
Joined: Jun 2012

If you have a local Panda Express, try the honey shrimp to satisfy your Chinese cravings, absolutely no burning for me. I can do sweet & sour chicken but have to exclude the pineapple. Mongolian Beef also works for me. Tried Orange Chicken the other day and it was still a no go. 

Hondo's picture
Hondo
Posts: 6136
Joined: Apr 2009

I am just happy as I can be that it is working for you as well, what great stuff, just wish I knew about it years ago..

 

Take care

Tim Hondo

donfoo's picture
donfoo
Posts: 1407
Joined: Dec 2012

Hi PJ,

The general consensus is to wait until at least 12 weeks post rads before doing that PET/CT. Any earlier and there is just too high a chance of false positives and that starts a whole road you don't need/want to go down.

Glad to hear about the food. You are doing very well at your point post-tx. Hang in there and keep trying things here and there and hotter and hotter and you will be
AOK. I'm now 9 months post and have no issue with any amount of heat and spice. Only side effect is my head starts sweating a lot sooner than pre-cancer. Just need to make sure I have a few napkins handy to wipe the near bald head several times during the meal.

You are doing great!

 

phrannie51's picture
phrannie51
Posts: 4004
Joined: Mar 2012

Three months seems to be the common time between end of treatment and first PET scan....doubt you'll hear much disagreement on that here.

I got a chuckle out of your eating experience when it comes to spice (made me think of when you ate the almond in the car waiting for the grandkids to get out of school without any water on hand).....I've done the same thing when they have the freebies in the grocery store....like sausage or something that can be hot.....and there's no where to run for water! Surprised  I seem to be a slow learner....

PJ47's picture
PJ47
Posts: 349
Joined: Sep 2013

Yes I also am a very slow learner when it comes to trying stuff I shouldn't. AKA walking on ice.

I am now scheduled for the full body PET/FDG dye first week in April which will be a week after the 3 month mark.  I am just concerned it may be too early as my otolaryngologist thinks it should be done at 6 months (which I worry may be too late).  With so many experts it is difficult to discern which way to go sometimes...

Liked the new local R/O who said he usuall sees patients post rads one month alternating with the ENT the other month for the first year, which seems reasonable and much better follow up than what C21 has offered.  Have to call and let them know the standard of care.  Haha.

Here is another bone head admission; the same night we went to dinner and i tried Mike's green curry dish and landed in the bathroom, I put a spoonfull of what I thought was a sweet red sauce to dip my pot stickers in and touched it carefully to the tip of my tongue which then sent a wave of heat through my mouth throat and nasal passages.  Talk about clearing the sinus area!  Wow it had red peppers in it, so I went back to the soy sauce.  

Watch out for that sausage,

PJ

Ladylacy
Posts: 553
Joined: Apr 2012

When my husband first was diagnosed he underwent radiation and chemo.  They did a PET/CT about 6 weeks after treatment and said he was clear.  Wrong.  2 months later he had difficulty breathing and was sent to the ENT that day.  He told us after scoping that my husband needed a trach and another biopsy with showed the cancer was back.  Wrong again.  We were referred to a head and neck specialist.  He said 6 weeks was too early to do a PET/CT because inflammation would hide any signs of cancer.  He said the tumor never went away and was still the same size as before.  He had a complete laryngectomy.  Then  was followed every three months with check-ups and PET/CT scans. 

Wishing you the best -- Sharon

 

Skiffin16's picture
Skiffin16
Posts: 8185
Joined: Sep 2009

Everything sounds excellent....

I'm sure given some time your taste will be back to it's old self..., actually for just being out and doing so well, more than likely a huge portion will be back before you know it.

As for the PET, 3 months is a good start more than likely.. I had my first around 3 months or a little less and I was good to go.

Some work out OK, some have a little residual show up.. At least you are aware if that's the road your results travel..

Keep on exprimenting, if it doesn't work out, try again in a month or so...

Best,

John

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