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Another NED - me!

sonyk728's picture
sonyk728
Posts: 102
Joined: Jun 2011

Woo Hoo! Just got NED after my last PET scan in July. The onc. was a little concerned about an area in my neck but he thinks that was just me swallowing during the exam. Let's hope for another NED on at my follow up in March. It may sound small but going from a 3 month PET follow up to a 4 month PET is big to me! 2 year cancerversary in Dec. Two chemos, 1 rad and Cyber Knife. Oh and 3 surgeries.

Just one more scan to contend with- a follow up CAT scan from Cyber Knife in December. They treated a 8mm spot on my left lung (the PET I just got was monitoring every thing else). I'm pretty confident they got it.

I've just noticed a lot of NEDs on the boards tonight and that is so great. Hang in there if you're still fighting - there's hope!

Wishing you a wonderful Thanksgiving and healing.

- Sonja

ditto1
Posts: 630
Joined: Mar 2012

on all your good news and now you can sit back and just enjoy your blessings this Thanksgiving.

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

So glad to hear from you and super happy to hear everythng is going well....

Keep On Keeping On..rock star...

Best Always,
John

phrannie51's picture
phrannie51
Posts: 3594
Joined: Mar 2012

I'm so happy for you!! All the good news on this board tonight is making me dizzy...LOL.

p

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

OUTSTANDING.

luvofmylif
Posts: 344
Joined: Sep 2012

Good to see positive news and am so happy for you . No matter who we are on this site and what we are dealing with, we all have alot to be thankful for this Thanksgiving and always. Enjoy your health and your holiday.

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

Hi Sonja,

Good update, NED all-a-round. I’ll have to remember “no swallowing during scan”.

By the way, last July I asked about how to describe “taste” “no taste” and I liked your answer the best, you said “I have no SENSE of taste” (at least during the summer of 2011). Well, I think you nailed it, that’s what I was looking for.

I truly hope you have the sense of taste (now) to fully enjoy your NED, you most certainly deserve it.

Best,

Matt

sonyk728's picture
sonyk728
Posts: 102
Joined: Jun 2011

Many of us have been there, not being able to taste any thing. That was about the worst side effect of all my treatments. When people kept asking "how are you" I had to repeat over an over how awful it was I couldn't taste food. And it struck me that "I have no taste" was bad so I clarified with "I have no SENSE of taste". Fully taste-functioning now. Loving food, can't wait for the wonderful meal my sister-in-law will prepare. I swear if they could make a no-taste pill, we would not have the obesity epidemic we do.

Take care,
- Sonja

Vikeman10
Posts: 62
Joined: Jul 2012

Great to hear about the Ned as it seems to be spreading to others. Happy Thanksgiving and to future Ned scans.
Randy

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Forgive me for prying. But I'm getting a CAT next week which may confirm metastasis to the lung for me. I was given the impression that if there are indeed metastasis, there would be no attempts at a cure only treatment to slow the growth. I have a half-dozen nodules, if indeed they are cancerous.

So why did you get cyber knife? (Again forgive me for prying. I'm trying to formulate the right questions for my CAT results.) Did you have H&N metastasis to the lung? Did you have just one nodule?

Dennis is also in the same boat as me. And his docs are doing a wait and watch also.

Any information would be appreciated. But don't give any information if you're not comfortable in sharing. Thanks Rick.

sonyk728's picture
sonyk728
Posts: 102
Joined: Jun 2011

Rick- you are not prying at all. That's why were here on this message board is to share.

After chemo and radiation in summer of 2011, a spot showed up on my right lung. I had 30% of it removed last December. Finished chemo #2 last March then a spot showed up on my left lung. Very small, only 8mm. I was given the choice of "ablation" where they laser it off but my onc. recommended Cyber Knife, as I had chemo 2x and only finished a few months before that. I had the treatment in Sept. and will be getting a CAT check on Dec. 12.

Hang in there Rick!

- Sonja

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Great news! Congrats, too, on going from every three months to every four. I think it only sounds small to people who haven't been there. Happy Thanksgiving.

Mikemetz's picture
Mikemetz
Posts: 331
Joined: Nov 2011

There's never a bad time for good news, but when it comes at the holidays, it's extra-good! Congratulations on your NED.

mike

katenorwood
Posts: 1801
Joined: May 2012

Sonja,
You're right it is a big deal when they start spacing out those scans and re-checks ! I am so happy you received NED for the holidays ! You're also right on all the NEDS....wonderful always ! Katie

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

GOOD NEWS! AMEN!! :)

rush1958's picture
rush1958
Posts: 197
Joined: Jul 2010

Congrats on the news!

Do the Happy Dance with NED this Thanksgiving!

Rush

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Adding to Golden's questions / prying :)

I just had a scan of the lungs Nov 7. The scan showed "ganulated glass appearance" in the top of the lung and the bottom of the left lung. It also showed several small nodes (largest being 7mm in size) in my left lung. Nothing was said about the right lung so I presume it was clear. My cancer treatment center (not a comprehensvie one) oncologist said it appears to him to be infection. He said the nodes were "puffy in appearance" and "flakey around the edges" ...he prescribed Levaquinn 500 mg for 7 days. Of course as an onco he said he could not rule out cancer, but felt "strongly" this was just an infection. The oncologist originally wanted to wait 3 months for a follow up scan...I politely said no way on the 3 months and he agreed to do another scan in 6 weeks.

However, I decided now is the time to have a 2nd opinion AND to move future follow up care to UW/ SCCA (that's the University of Washington Seattle Cancer Care Alliance. They now have my records and will be calling me back with the 2nd opinion if they have any concerns..and I have my first appt December 13 with them.

I am an extremely pro-active type..probably almost annoying to the docs when it comes to follow up care (bless their hearts). I feel great, spent the whole month of Sept hunting and cutting wood where I live (I live at 5500 feet elevation and the weather is cold and damp here that time of year in Idaho) so I feel too the onco doc is correct...but then that pro-active planning / annoying guy part in me always has irons in the fire.

So (now that I have written a book) ...may I ask why the cyber knife was offered to you before they knew it was c or did they know already? May I have some information on where you had your procedure performed (location / doctors name)...do you have any suggestions or feedback on questions I might should ask that maybe I did not already?

I did ask about a PET and a fna ..onco said 7mm is too small for fna...PET would show hot if infection or cancer and waiting is the best thing to do. I also agree with that (but not the original 3 months he wanted) ...

Very glad you are NED ....I have followed your posts and boy you have been through it ...so your NED post was super encouraging and made my day!!

Best,

Tim

NOTE: I did not think the 7 days of Levaquinn was long enough....My wife and I think I am aspirating and need a barium swallow test (never had one). I clear my throat all the time and I choke often...originally I felt this was due to still trying to eat to fast and takig too big of bites (before my dx I was a fast and big portion eater :) Some habits are just hard to break!! :)

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

This is just wonderful!!! Congrats and let it stay that way!!

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

So happy for you, I've been following your posts and this makes me so happy! I am curious to see how you answer Tims questions. I have some which are much the same, my ENT put me on a 10 day round of 500mg Levaquin. I had/have a cough and sometimes it will produce something but most times not. my PET/CT showed some activity in my lungs and both ENT and rad onc said that it looked like rad induced pneumonia. I've since finished the Levaquin but still cough. What were your symptoms, if any?

Congrats again.....now go and have a very Happy Thanksgiving!!!

Billie

sonyk728's picture
sonyk728
Posts: 102
Joined: Jun 2011

I was offered Cyber Knife after my doc threw his hands up in there air.

The C started in my mouth (surgery 1/11) then to my neck (another surgery 5/11 and then chemo and rad summer). Yet, it still spread to my right lung Nov. 2011 (surgery followed by chemo #2). Then it showed up in my left lung (8mm)this past July. That's when the doc threw his arms up. He didn't want me back on chemo in July after just finished in March for the second time. Ablation was another option that my biopsy doc gave me, where they just laser it off, but my onc. wanted me to do Cyber Knife instead.

I had Cyber Knife at St. Joe's in St. Paul, MN with Dr. Kim and Dr. Fink. The staff was AMAZING and I go for a follow up there in a few weeks. Here's their site: http://www.healtheast.org/cyberknife-center.html

Best to you!
- Sonja

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Keep us posted ....and again, glad you are doing well and got that NED. I'm going to print this and give it to a doctor who actually told my wife "once it goes to the lungs, that's it" (and trust me, half the stuff he says does not jive with what most in his profession say) ...you are proof that is not true and my wife will be delighted to see your posts :)

I'm glad you share your experiences.

Tim

yensid683
Posts: 222
Joined: Apr 2012

Congratulations! It feels SOOOO good, doesn't it?

Have a wonderful Thanksgiving, I'm thankful that we have another member of the NED club!

Peter

josh r.
Posts: 176
Joined: Oct 2010

That's wonderful news Sonja! Yesterday, Thanksgiving Day the 22nd, was my 21st anniversary of NED and I am going to go for 21 more years! I wish you and all our brothers and sisters the same blessing that I have received. All the best, josh r.

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