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AdCC Six month post treatment CT scan.

lts's picture
lts
Posts: 75
Joined: Nov 2012

Hi all,

It's been awhile since I've posted but I do read many posts. First 90 day post treatment MRI was surgical site where they removed submandibular gland with tumor in it. NED. Had a CT of chest last week and my appointment today with ENT\Surgeon. No evidence of disease in lungs. That’s 180 days post tx. Whew!

 I have an appointment in November with Oncologist for a 9 month checkup and won't have another scan for 6 months. Not sure I agree with that as Adenoid Cystic Carcinoma, no matter what stage( for me stage 2 ) is always graded as a high grade malignancy with a very high reoccurrence rate and I feel I should be watched closely. I mentioned this to my ENT and he reassured me I could contact him anytime and, after meeting with Onc in Nov, if I am not comfortable, to see him and he would take care of it. I like my ENT.

Anyway, I feel really good today! Better than I have felt in a couple of years. Most of the side effects of rad tx's are gone, just some stiffness in neck and under chin, I can usually stretch that minor discomfort away. I've put all the weight back on and then some  but who's counting?

I am struggling with smoking. Made it 7 months and found myself with a cigarette in my mouth. Quit and started. Quit and started. Quit and on day 5. Will wake up and ask for strength. Ugh! You think with a c dx it would be easy.

Go Tigers!!!

 

Regards,

 

 

Luke

fishmanpa's picture
fishmanpa
Posts: 1157
Joined: Jan 2013

Luke,

Thats great news about the NED! Nothing better than Mr. Ned. I hear you about the apprehension concerning Dr.'s visits. While I'll be seeing my team every three months for the next two years, I won't be getting another scan. I'll be getting scoped and of course if something seems amiss, they'll order an xray or more if they feel it necessary but I was a little taken back by that. However, on the other hand, they're that confident they got the beast so I'll take that positive attitude anyday! 

Now... smoking... Dude! what are you doing? Get off the tobacco! Go out and get yourself an electronic cig kit and wean yourself off the nicotine! That's how I got off the cigars last year. I used South Beach Smoke. It's a vapor. Even my team agreed that it was better than inhaling the 4K chemicals in tobacco. You can step down in nicotine strength to 0 and stop. I ain't gonna lie, I still crave a good stogie but just the thought of treatment quells that right away!

Positive thoughts and prayers for strength!

"T"

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

While I'll be seeing my team every three months for the next two years,

Does the 3 month visits include all the major players: ENT, MO, and RO? I am seeing each regularly now but the longer term visit schedule has not come up, just curious. Actually, more than curious - seemingly will offer me much greater comfort knowing regular checks will ensure quick action if need be down the road. don

fishmanpa's picture
fishmanpa
Posts: 1157
Joined: Jan 2013

Yes, I'll be seeing all three docs (MO, RO and ENT) as well as SLP for the next two years. However, this last time, I was supposed to see my MO a couple days after my scan and RO/SLP visit and she said she didn't need to see me because the reports were so good from everyone else. She ordered my bloodwork to be done locally and faxed/emailed to her. 

I'm seeing my ENT in Sept. (last saw him in June) and my RO, MO and SLP in November. After two years it will go to every 6 months and after 5 years they cut me loose.

"T"

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

Luke,

It is well documented how addicting nicotine is yet many do kick it as "T" just offered himself as a living example. You gotta be proactive to quit the habit or after some time it is just going to be near impossible. Do it early, work hard to beat it. Even smoking some medical marijuana would be less harmful to your heath. Checkout the other thread on that topic.

don

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

Hi Luke,

Good report on post check-ups and side effect recovery.  The H&N world is all over the place on scans and appointments.  As long as your ENT keeps a close watch you should be fine, virtually all of us have a 5-year stretch to make, it sure places a different spin on time.

Also, good luck on kicking the tobacco.  I reckon you already know all the pluses and negatives.

Live long my friend,

Matt

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

T's suggestion about the ecigs.  I used them to quit smoking, also....You might feel a little "twinge" the first couple of days, but that's because you are withdrawing from the "other" 1001 ingredients found in processed tobacco.....but you'll still be getting nicotine, and the "feel" of smoking, only you'll be inhaling vapor instead of smoke from burning material.  It's not very expensive either to get a starter kit....WAY less than one carton of smokes.  Smoking is a bit** to quit....the ecigs were my ticket, and they worked....It's amazing how much less addictive nicotine is by itself, than when it's mixed with all the other crap in they put in cigarettes....

On the check ups....I've wondered if my Docs are taking as good of care of me as they should....Last CT was in March....my next one is at the end of this month.....that's five months!!  Asked them to CT my chest while they're at it....and they said no, I have no symptoms of anything going on in my chest (yeah....but I smoked Pall Mall reds for 40 years)....asked if I'd ever have another PET.....no, just a CT of my head and neck.....and who knows when the next one will be.

 

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

Sounds like you are doing well...., stay at it...

As for the smokes....

Look at your avatar..., look really hard.... You have a mini-me.. He sees you as an example..., kick the smokes and be here for him to a very ripe old age..., or at least give him all of the possibilities of that happening.

Thoughts & Prayers,

John

TracyLynn72's picture
TracyLynn72
Posts: 756
Joined: May 2013

about you being NED!

 

I was a smoker for 10+ years.  I enjoyed smoking.  I liked the taste.  I found out I had a tumor and the day of my biopsy was my last smoke.  It's been since January 10th, and thankfully the smell now makes me feel sick.  I haven't had one and don't plan on it.  I'll pray for you to kick that habit...I'm so much happier without having to have a cig all the time.  I smell so much better, too!  You are strong and can definitely do this!! 

katenorwood
Posts: 1890
Joined: May 2012

Fantastic news !  You know your stuff on our DX well !  Stay on top of it.....remember we are our best advocate !  Also on the smoking.....it's not easy I know !  But for your immune system to stay top dog ya gotta do it !  We can also get a second primary.....none of us need to face that if we can avoid it !  ADCC was not caused from your smoking.....we know this.....good luck Luke !  It's really great to hear from you !  Hugs sent !   Katie

debbiejeanne's picture
debbiejeanne
Posts: 2895
Joined: Jan 2010

luke, congrats on NED!!  that is always wonderful to hear.

i smoked for 40+ yrs.  when i got cancer i quit for 7 months.  then my nephew died and i started again.  i smoked for months and then was told the cancer was back.  i had to have a complete laryngectomy to get rid of the cancer.  that was 2/28/12.  needless to say, i haven't had a cig since.  my point being, i was just like u, i kept on smoking b/c i wasn't strong enuf 2 quit, so i completely understand.  try the patches, they work for a lot of people.  u have 2 find something 2 help u quit.  i wish u the very best as i know how hard it will be.  but U CAN DO IT!  lets us know how you do.  good luck.

dj

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

I know it is hard to quit those cancer sticks. I tried many times to quit before I finally went cold turkey and succeeded. My daughter has tried everything out there to no avail. The best advice I got on quiting came from a hypnotist. "If you really want to quit smoking, you will quit without anything. If you do not want to quit, nothing will work." My husbands first wife was hypnotised to stop smoking and it worked for a few weeks but then she started back. She never kicked the habit and died a few years later from lung cancer. All this is to say, chose life over those cigarets and depend on God to give you the strength. I am praying you succeed.

Debbie

debbiejeanne's picture
debbiejeanne
Posts: 2895
Joined: Jan 2010

deb, i tried the hyptonist.  i quit for a while and started again too.  unfortunately, i'm afraid u r right, the only way to quit is to make up your mind and do it.  there is no easy way.  Yell  i wish all smokers the very best and say a prayer that they gain the strength to quit.

dj

meaganb's picture
meaganb
Posts: 239
Joined: May 2012

Congrats Luke! So good to hear that you're doing well. I have never been a smoker so I don't have any wisdom to offer on quitting, but the others' suggestions sound helpful. Good luck with it! Keep us updated!

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