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Minimal residual disease
Kimo Carew
7 Posts

I just received the PT/CT BONE SKULL BASE TO MID THIGH scan results and unfortunately I have FDG avidity within the right tonsillar fossa and right base of tongue/vallecula region. Minimal residual activity is present. I searched the site and couldn't find another discussion string on the topic. Does anyone have a similar experience or knowledge they could share? I am 12 weeks out of treatment and feeling pretty darn good otherwise. I ran 2 miles today, did 45 pushups and I am eating and maintaining my high school weight. My throat still hurts, but it certainly isn't as bad as it was. I have my fingers crossed that this isn't the curtain call.

9 Replies
Brighty
8498 Posts

@Kimo Carew welcome!!! You are a super star forsure…running 2 miles and 45 push ups!!!! Good for you!!!! I dont have experience with your cancer type but I'm going to tag @law1

@Kcp1007 and @Ilse58

and @JamesT to join in.

You might be interested in our fitness connection group if you click under ‘groups’ . There might be a few other groups you would be interested in joining as well. Im sure you will get other responses soon. Welcome!!

Boby1511
1029 Posts

@Kimo Carew

Hi there, welcome.

Wow, that is a lot of exercise! So good.

I wasn't aware there was a fitness group here, thank you Brighty.

I have no familiarity with your cancer. Thank you for sharing.

Sending you best wishes.

Ilse58
7 Posts

@Kimo Carew hello. My husband has stage 4 sarcomatoid differentiated squamous cell cancer of the tongue with bilateral nodal disease and lung metastases. I searched through his records and could not find anything about FDG Avidity. He has been thru 8 doxatacel, cisplatin and 5FU treatments with 35 rads. That finished in December. Just started Opdivo as immunotherapy. He has a trach as well as a Peg Tube. Awesome that you are able to run. My hubby also ran. Couple of half marathons and lots of 5 and 10km. Keep on running. I am a hamstring injured runner so I walk for now. I wish you all the best in your journey. Reach out any time.

ACH2015
2344 Posts

@Kimo Carew

I've found its always best to discuss scan results with your oncologist. Many times my PET or CT would include wording I could not put properly into perspective. The oncologist always could, and provide next steps (surveillance, monitoring, intervention) moving forward.

Hopefully your consult will clear up your specific circumstances.

Keep well.

ACH2015

Kimo Carew
7 Posts

Seeing radiation oncologist on Monday and regular oncologist on Tuesday. I just have the weekend to stress about it. It is obviously not good that they didn't get all of the cancer the first go around.

ACH2015
2344 Posts

@Kimo Carew

PET scans show up any type infection or areas that are injured and are under repair. It is easy for our minds to go to the worst case scenario, and hopefully the news is not as you suspect. Regardless, I have always looked at surveillance scans as my friend to keep me in the loop for any potential issues and if so - that they are caught at the earliest timeframe to reduce the level of intervention.

All the best and keep well

ACH2015

law1
731 Posts

Hi and Welcome, Kimo Carew, from a fellow survivor of tonsil and basal tongue cancer on the right side only----HPV positive, former cigarette smoker who still loves gin!!! @Brighty tagged me as she knows you and I have/ had oral cancer . It is wonderful news that you have finished radiation (I had 36 rounds) and that you are able to eat via your mouth….did you have any difficulty opening your mouth wide enough to yawn? to speak? to eat or drink?, any pain? Or, like some of my oral cancer colleagues---they had no pain or any negative recovery stories. Go figure!!

If you have upcoming meetings with various oncology medical staff, you are on the right track---sometimes it does take a few treatment options to eradicate the cancer cells. Did you have a PET scan? Making a list or a journal may help with questions you may ask of your medical team.

How about any medications? and, do you have any difficulty eating or swallowing? I can suggest a great toll-free phone resource staffed by cancer specialists who listen, support, and advise you greatly…perhaps you have tried it already: 1-888-989-3333.

Additionally, via this website, links which have huge amounts of info are: Publications; Forums/Types of Cancer/Head and Neck; Blogs; Resources. Please keep posting your journey, as cancer is a beast!!! I am 3 yrs. cancer free and can relate to your ups and downs. Hang In There!!!….and ask me anything…..

Kimo Carew
7 Posts

Thank you counselor… my jaw on my left side (opposite the cancer) is sore as hell, and yes, it hurts to open my mouth… but i am doing my rehab pretty religiously. Going off to see oncologist in a few minutes and hoping for good news.

ACH2015
2344 Posts

@Kimo Carew

Glad to hear the scan shows what is likely healing and not cancer. Don't let the radiation oncologist get under your skin. We have more important things to concern ourselves with than adding additional stressors.

Keep well

ACH2015

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