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Update on mets

First, thank you to everyone for their well wishes and support. I had the PET scan yesterday and my sister, brother, husband and I met with the doctor. The good news is no uptakes in lungs, liver or bones so reoccurance is isolated. Tumor board is meeting tonight but some type of radiation will likely be the tx. even if this area received it previously. Yes, you can radiate the same area twice with additional concerns. If it is the traditional IMRT(?) he said the side effects would be much less than before. Other options on the table are gamma knife, cyber knife or proton therapy. Leaning toward gamma knife and getting a second opinion from Mayo in Rochester. I heard the words treatable and still cureable so I am up for the fight. Of course, there always has to be that little something extra which was a slight uptake on floor of mouth on other side, thought to be residual or movement and not of concern "at this time". I always thought of cyber knife and gamma as surgical procedures, I guess because of the word knife. They are both radiaiton therapy. There are risks but it's a one time shot rather than 7 weeks. Knowing others here have fought the fight two and three times with success gives me hope.
Hugs,
Candi
Comments
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Candi
Candi,
Just saw your earlier message. Hang tough, you’ll beat this! Being another St. Louisan, but going to a different facility, I could give you another local name if you are interested. I would highly recommend him and I think LTS would also. If you’re interested PM and I can give you more info.
Positive thoughts and Mojo being sent your way!
Greg
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Mets
Candi it sounds like you got better news than you expected ! Treatable - Cureable sounds great and no mets to lungs, bones or Liver !!! I agree with everyone else you can do this !!! I too thought Cyber knife andgamma were surgeries . One time sounds a lot better to me than 7 weeks .
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Thanks everyone!Hondo said:Hi Candi
3 C’s for me, twice radiation all in the same area, yes you can do it and survive. Keep your positive attitude and prayer and you can do almost anything.
God Bless
Hondo
I'm back in the whirlwind of appts. and scans. Got a call last night at nearly 10pm and met with ENT at 8 this morning. Tumor is too low for gamma knife. He said time is of the essence. In retrospect, this lymph node was enlarged a year ago but nobody noticed. Now aggressive. An exam today did not show any hidden source in the mucus membrane. Have an appt. tomorrow to see if cyberknife is an option and next step would be to look into proton therapy. Hard to believe, STL doesn't have proton therapy yet. If I go that route, maybe Tampa. Everything has been sent to Mayo. Yet to hear. Concern is this node did get 56 grays a year and a half ago and apparently, it did not kill it so dr. is concerned maybe resilient to rads altogether. No chance of cure with chemo. No clinical with rads. Will keep you posted.
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good 2 c u, rick! have aToBeGolden said:Keep Up the Fight
Having gone through multiple treatments now (including radiation, surgery and several rounds of chemo), there's nothing to do but keep up the fight. Keep the Big C at bay. Best wishes. Rick.
good 2 c u, rick! have a great nite.
dj
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Candihwt said:Thanks everyone!
I'm back in the whirlwind of appts. and scans. Got a call last night at nearly 10pm and met with ENT at 8 this morning. Tumor is too low for gamma knife. He said time is of the essence. In retrospect, this lymph node was enlarged a year ago but nobody noticed. Now aggressive. An exam today did not show any hidden source in the mucus membrane. Have an appt. tomorrow to see if cyberknife is an option and next step would be to look into proton therapy. Hard to believe, STL doesn't have proton therapy yet. If I go that route, maybe Tampa. Everything has been sent to Mayo. Yet to hear. Concern is this node did get 56 grays a year and a half ago and apparently, it did not kill it so dr. is concerned maybe resilient to rads altogether. No chance of cure with chemo. No clinical with rads. Will keep you posted.
I have heard a lot of good things about the Proton Therapy mostly that is does not have a lot of the bad side effects that normal radiation give. Just keep up the fight and remember we are all here pulling for you. I am praying that God will open doors for you to get the help you need.
God Bless
Hondo
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Hi ChristieHummingbird3 said:Prayers are going up. Pray
Prayers are going up. Pray you get a peace about your decision, all thE right people are put in your path and I believe you already have the will, strength aNd endurance to Beat this! Many blessings Candi......Christie
Welcome to the family here on CSN. Sorry to know you are in this boat with us having C, but as you already know your faith in God will only become stronger in this walk with Him by your side.
God Bless
Hondo
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Options narrowingHondo said:Hi Christie
Welcome to the family here on CSN. Sorry to know you are in this boat with us having C, but as you already know your faith in God will only become stronger in this walk with Him by your side.
God Bless
Hondo
Gamma knife is off the table because tumor too low below brain. Met with Cyberknife doc here in STL yesterday and he said he wanted to "take a shot at it" but did not offer much optimism and was filled with very risky side effects to the point that I must consider quality of life. Proton therapy is next investigation (MD Anderson or Indiana Univ). Dr. at Mayo calling back Monday or Tuesday, team is reviewing now. Other than some anxiety, I really feel good physically. Occasional headache where tumor is. Doctor yesterday asked when those headaches started and I said "when they told me it was there". I have a strong faith, loving and supportive family and have been blessed with the ability to travel where and when needed for tx. if there is one. Will keep you all posted.
Hugs
Candi
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