Pet scan results. : Good morning peeps... - Lung Cancer Support

Lung Cancer Support

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Pet scan results.

ynkefan08753 profile image

Good morning peeps! I know I said I would share my pet results but I’ve had to take a little time to absorb it all myself. We were expecting bad news but sometimes you’re just not prepared for what you’re going to hear. That was the case here when they told me I was 100% CANCER FREE! Holy moly I wasn’t expecting that and neither was my oncologist lol. As it turns out, the symptoms I’ve been having are likely Lupus or MS. Further testing is happening to confirm but even if it’s one of those ...it’s better than metastasis because I’ve reached my lifetime radiation allowance and the only treatment that works for bone mets (and even IT doesn’t cure anything the second time around) is radiation. My doctor thinks the immunotherapy trial (and a lot of praying) is what caused my incurable cancer to have disappeared. I hadn’t had a clear scan in the almost 4 years since diagnosis. Even in September my tumor showed some progression but apparently that’s how these immunotherapy infusions work. Here today gone tomorrow. I’m going to find out the name of the drug since it’s finally been approved for use outside the trials. It could help some or all with stage 3 or worse NSCLC.

I am a team leader for my team in the Jersey Shore Free to Breathe walk for lung cancer research this Saturday and I had to rewrite my speech because of my results. I wanted to post the link on here in case anyone was interested in walking but this site doesn’t allow paste and copy. I’ll try and figure out a way today but in the meantime if anyone wants to register to walk or to just sponsor a team member, it’s easy to register. You can get the website off my Facebook page (Deana DAmelio Stowman) or look for the info on here in a few. Funding lung cancer research is what’s going to save lives. Without this drug I likely wouldn’t be here because of the location of my tumor and all the pressure it was putting on my heart and bronchial tube. Our cancer doesn’t get near the awareness and attention it deserves and there are no pink parades and nfl players wearing white ribbons and socks. We are the “red headed stepchildren” of the cancer world and it’s time it stops. I don’t want to sound like a broken record or a lunatic lol...I just want everyone to hear the great news I heard for themselves or loved ones. There IS a cure out there but until lung cancer gets the same awareness as the other, less ugly cancers then it’s jist not going to happen. Thank you to everyone for all the support and also know that I’m not going anywhere. This group has done wonders for me and my cancer journey and I won’t abandon ship just because of my results. We all know how likely it is for the cancer to return at some point and I’ll need my support pals if it does(hopefully it won’t ) but I want to be here to support everyone else like you’ve done for me. Having this group to bounce options and ideas off has been cathartic in so many ways and as long as you’ll have me...I’m staying. Good health to everyone xoxo

18 Replies

participate.lcrf.org/site/T...

Here’s the link for the free to breathe walk. It’s this Saturday in Asbury Park NJ and everyone is welcome to come watch me stumble through a 4 minute speech lol. I’m great in writing but have never made a speech in all my 48 years. Hopefully I kick butt just like I did to my cancer !! Yay! Hope to see you Saturday. P.S. NJ is BEAUTIFUL in the fall to anyone who’s not been here and is in the mood for a road trip. Hint hint lol.

Denzie profile image
DenzieModerator in reply to ynkefan08753

Congratulations! That’s an awesome report. Did the doctor say you were NED?

Thank you for raising funds for FtB. Their new partnership with the Lung Cancer Research Foundation makes them the largest nonprofit for lung cancer research funding in the US.

The Bonnie Addario Lung Cancer Research Foundation is also an important player. I know of two lung cancer patient groups who’ve done fundraisers to find seed money to fund the next treatment for their extremely rare lung cancer mutations. The Addario Foundation put them together with researchers and found funding to sponsor that research.

FYI, Chris Draft is a retired NFL player who lost his young, 38 yr old, wife to lung cancer. He has a family foundation that is dedicated to funding lung cancer research. He’s out there raising awareness. A week and a half ago I was a guest of his at the Lions/Green Bay game. He tried to put a survivor in every stadium as part of the NFL Make the Right Play cancer education program.

chrisdraftfamilyfoundation....

I hope you continue to thrive and share your experience here with others. New patients need to know there’s hope and your experience will bring that to them.

ynkefan08753 profile image
ynkefan08753 in reply to Denzie

Thanks Denzie and no, he skipped last NED and went straight to cancer free. I hadn’t heard of that nfl player before but it’s nice to knoebthere are people out there fighting just as hard forbidbas we are for ourselves 😀

Denzie profile image
DenzieModerator in reply to ynkefan08753

If you’re a fan and interested in an all expense paid trip to the super bowl join his challenge.

ynkefan08753 profile image
ynkefan08753 in reply to Denzie

Ill check it out. Thanks!

What a great answer of prayer ‘Praise God through whom all Blessings flow’. I wait for you to name the immunotherapy drug.

What a good report! So glad you can actively partipate in making more people aware of what a killer lung cancer can be. You keep on keeping on!

A couple of words sum this up ...

JUST WONDERFUL

I am so very pleased for you and your family x

Please let me know what the medication was. My husband's chemo and radiation failed and he was inoperable due to location of cancer. He was on Opdivo which is a immunotherapy med but after almost a year developed 5 other areas. Thank you

Good morning. I’m waiting for my research nurse to call or email me back to get all the drug info. I will let you know just as soon as I have it. Xo

Wow, great news! Keep it up! I'm a 69 year old being treated for g 4 nsclc since Dec 2017. The likely cause was agent orange from exposure from Army service in Vietnam. I was on pemetrexed and carboplatin for 6 cycles and radiation to the head for a week. My 3 pets scans have shown regression of my small tumor and now I'm on "maintenance" chemo only with just pemetrexed. Actually going today at 9:30 and having a new PET on November 1. I'm going to hit up your link and make some donations, thanks. I bet there's a lot of new drugs so I will talk to my oncologist about it when you find out.

Congratulations on being cancer free.

That’s a great report! We do give people hope! Good luck at your walk. We walked in Northern New Jersey on Oct 7. We reached our fundraising goal and it was a good day

Wonderful news, it must be a week for good news.

I'm happy to report that my latest CT scan (last week) showed I am still stable, and it's been that way for the last 27 months, while off treatment.

I'm having a lot of back and leg pain, but it seems that it's all related to Fibromyalgia and Degenerative disc disease and not any mets. Now to get this better controlled?

Huge relief.... I sincerely hope everyone does this well, never imagined I'd be here posting this when I was diagnosed on 3/27/15 with stage IV NSCLC, a brain tumor and pulmonary embolism. I feel blessed.

I'm also wishing everyone good wishes.

~ Lisa

Your wonderful news made my day! Doing the happy dance 💃 for you! I was initially being given chemo because after my right upper lobe was removed in March, cancer cells were in the lymph nodes and I was diagnosed as stage 1. Now I have an inoperable stage 4 NSCLC tumor close to my heart. I have not had a treatment since April because the 2nd round of chemo almost killed me. I lost 35 lbs. and was hospitalized with all my electrolytes outbof whack. While in the hospital from that is when this tumor was discovered by ct scan. I changed oncologists to the one who treated me in the hospital who was very knowledgeable and communication with him was much better. He wanted me to build up my body before more treatments and also the biopsies kept coming back negative. They finally did a mediastinoscopy and it was positive. The tumor measured 2.7 cm. I had another ct scan in September and my tumor had shrunk by 1 cm!

My oncologist was amazed by that. He said he wanted to wait another month before starting anymore treatments. So, your great news gave me so much hope that positive energy and prayers will render me cancer free too! Thank you for sharing with us.

ynkefan08753 profile image
ynkefan08753 in reply to Wils70

Please talk to your oncologist about immunotherapy. The side effects are minimal (rash, itching) and the results are so far ..amazing. I hope things work out for you. Xo

KimGO2 profile image
KimGO2Administrator

What a wonderful response to the Immunotherapy clinical trial and news to share.

Congratulations!

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