Scan results- my journey continues
So much to take in and so many mixed emotions. Flew to Mayo early yesterday, had scan, met with ONC and then Radiologist, finished about 6pm and flew back to STL. Got some awesome news and some not so good. I will start with the great news...the SBRT tx worked! The life threatening tumor wrapped around left carotid artery is GONE! No mets to lung, bone or liver. In my wildest dreams, I did not expect the tumor to be gone...shrunk yes, but not gone. With all of the good having been said, I had another spot crop up on the opposite side. Previously, everything has been on the left. This is at lower base of skull on right. More good news, Radiologist can do SBRT again in that spot and rid me of it. For anyone new, the SBRT was 5 tx over 1 week with virtually no side effects for me. This may even be in a spot where it could be surgically removed. Back to the bad...the assumption that that there could still be microscopic cancer cells not large enough to see on PET. The ONC encourages chemo. The Radiologist has a "slight" preference of chemo and SBRT over just SBRT. He can do SBRT numerous times but not in same area twice. Mayo is very big on biopsies but like the last spot, there is risk with going in to biopsy. On a slim chance that this could be an inflamed lymph node, is the biopsy worth the risk? I was very fortunate at the skilled hands of Mayo last time but with the likeliness such as it is, I believe I will by-pass that risk. At encouragement of family, I am leaning toward chemo first. Mayo will come up with the concoction but it will be administered here in STL. Probably once a week for 6 weeks. Then back to Mayo for SBRT. Thankful for options but wishing no need. Feeling very blessed and unable to quit thinking that if I did not have the family, the means and the opportunity to go to Mayo, I would be left standing back in front SLU crying and hugging my siblings and chosing between letting nature take it's course or getting tx from a doctor that was so negative and creepy that I wouldn't get a tatoo from him. I will always remember that as the day my hope was taken away. Something that I hope never to feel again. My heart aches something fierce for the less fortunate right now. While my future is undetermined, I have continued hope.
New spot is not huge so I will have the holiday to enjoy before starting any tx.
Blessings to all and Merry Christmas!
Hugs,
Candi
Comments
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candi, great news that the
candi, great news that the original tumor is GONE! I'm doing a happy dance around the kitchen for you. I'm very sorry to hear there is a new spot but praying that it is just an enlarged node. for now, i hope you can concentrate on the good news and enjoy the holidays. continue to have faith and believe and pray. prayer really has a lot of power. you will remain in my prayers. Have a Merry Christmas and a Happy, Healthy New Year!
God bless you,
dj
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Candi....I popped in here
first thing this morning because you were on my mind, and were the only one with a PET this week we hadn't heard from. Great news on the last tumor....gone! Gone!! Gone!! As for the new "possible" spot.....crap! You've been through SBRT, tho....and know it's not like going through IMRT (thank God).....I think you decision to skip the biopsy, and do the chemo is a good plan......then on to the SBRT to kick cancer's butt out the door!!
Heartfelt hugs going out to you from me.....I hope when this is all said and done, you get to run into Dr. Creepy, and thumb your nose at him....
p
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Good news, bad news
Glad to hear treatment worked on first tumor, sorry to hear about something new. I saw that you commented on many posts this morning and was wondering how your tests came out.
Just to let you know. I was in shock last Sept to hear that I had cancer again 6 months after treatment, so shocked that I only heard nerve in cheek. I found out and saw scans of TUMOR in skull!! Now I know why I had the headaches that sent the doctors to look further. Glad to say the 'c' is aggressively DYING. I have been fighting this since 2010. I know that treatment is the last thing that any of us want to do but, I did it 3 times and then Cyberknife, you can do it to. I agree with Phrannie, skip the biopsy and get on with treatment after the holidays.
Bless you and yours, I know this is difficult but one day at a time. Last December I was told not to make any long range plans, in Sept I didn't think that I would see Christmas and now NED for Christmas.
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Best wishes
Candi,
The good news is great, the bad news is blah. Thank goodness, ou have great doctors guiding you along from battle to battle. As to decisions ahead, my own view of course, is I would want to be sure the planned treatment is to attack a verified tumorous cancer, not a highly suspect thing. If odds are 99% the diagnosis is cancer then go ahead but at some point when does it become reasonable to do the test to verify the need for the therapy.
Given you are comfortable with the diagnosis then chemo can and does kill most if not all microscopic cancers that hide away from current diagnostic tests. Chemo is really tough but if it nuks all micro cancer from your body then that makes it an easier option. My view is biased as I had induction chemo with the dreaded triple cocktail: TPF. Even though there are no guarantees with cancer, I sleep well knowing it killed whatever micro cancers were around at that time. Given the chemo rounds shrunk/minimized/killed the primary and nodes, I KNOW it KILLED all micro cancers of the same entiology. I then did have full course of rads and chemo too.
I don't know much about SBRT but if it is basically a more targeted form of IMRT then you do have the issue of that therapy not killing other micro cancers outside the field. Ask about the chemo admiistered with SBRT. Is it there as an assist, a radio-sensitizer to help the SBRT or is it given with the goal to kill off all micro cancers throughout your body? After all the time here, I'm still not sure if the chemo, large bag or small, 3 cycles or weekly, serves both purposes.
As you say, this can wait a couple weeks so have a great holiday with your family,
Don
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MOJO!donfoo said:Best wishes
Candi,
The good news is great, the bad news is blah. Thank goodness, ou have great doctors guiding you along from battle to battle. As to decisions ahead, my own view of course, is I would want to be sure the planned treatment is to attack a verified tumorous cancer, not a highly suspect thing. If odds are 99% the diagnosis is cancer then go ahead but at some point when does it become reasonable to do the test to verify the need for the therapy.
Given you are comfortable with the diagnosis then chemo can and does kill most if not all microscopic cancers that hide away from current diagnostic tests. Chemo is really tough but if it nuks all micro cancer from your body then that makes it an easier option. My view is biased as I had induction chemo with the dreaded triple cocktail: TPF. Even though there are no guarantees with cancer, I sleep well knowing it killed whatever micro cancers were around at that time. Given the chemo rounds shrunk/minimized/killed the primary and nodes, I KNOW it KILLED all micro cancers of the same entiology. I then did have full course of rads and chemo too.
I don't know much about SBRT but if it is basically a more targeted form of IMRT then you do have the issue of that therapy not killing other micro cancers outside the field. Ask about the chemo admiistered with SBRT. Is it there as an assist, a radio-sensitizer to help the SBRT or is it given with the goal to kill off all micro cancers throughout your body? After all the time here, I'm still not sure if the chemo, large bag or small, 3 cycles or weekly, serves both purposes.
As you say, this can wait a couple weeks so have a great holiday with your family,
Don
Candi,
I was out on a project, but saw this and wanted to send you my best, so I made my way to the nearest computer (too old to figure out how to respond via phone).
I'm so very, very glad to hear that your tx worked and that the tumor is gone! I definitely think it's a reason to celebrate. Sounds like you've got an excellent team working in your corner at Mayo with proven experience treating this.
Relax, enjoy your family on the Holidays and come out kicking booty in the New Year!
As always, sending you my best and some good Mojo!
Greg
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Glad for the good news
Glad for the good new. Not thrilled by the bad news. Is going to Siteman an option? Since there is one so close to your home. Better than that drive to SLU.
I'm sitting here working (well, when I'm done here) waiting to hear from my GI. During the dilation on Monday - he found a suspicious growth. Wasn't there the first 11 times. Something was there on the 12th time (but it was so close to #11, he was hoping it just hadn't healed yet). But, it was bigger on 13 - with plenty of healing time in between. If it is something, I think I'll check out Siteman. But, if an ENT needs to remove it, then there is one at SLU that specializes in reconstruction - and maybe I can get rid of the scar tissue so I can swallow - and get my vocal cords fixed up - all at the same time.
So back to work. (the doctor's office emails me because I can't talk on the phone anymore).
Keep us up-to-date with what's going on!
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I am almost crying
to read the tumor is gone. I am THRILLED for you! Merry Christmas and Happy New Year to you!! ((HUGS)) Prayers for the new spot to be nothing and to vanish!
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I'm glad to hear the original
I'm glad to hear the original spot is clear now, and that any second is treatable. I wish so much that you didn't have to go through any of this again, but I'm also relieved and glad that there are good options for treatment--especially that it's not especially long. I'll be thinking of you--try to relax and enjoy the holidays with friends and family. We're all blessed to be here for another year!
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Hi Candi
We live on a roller coaster up one day and down the next and take the good news with the bad at the sametime. I am very happy to hear the tumor around the carotid artery went by by. I have problems everyday with the radiation damage to the carotid artery, both High and Low BP. Will continue to keep you in prayer my friend.
God Bless
Tim Hondo
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As alwaysHondo said:Hi Candi
We live on a roller coaster up one day and down the next and take the good news with the bad at the sametime. I am very happy to hear the tumor around the carotid artery went by by. I have problems everyday with the radiation damage to the carotid artery, both High and Low BP. Will continue to keep you in prayer my friend.
God Bless
Tim Hondo
A huge thank you to everyone for their continued support. I don't know where I would be without all of you. Wishes for a Merry Christmas and Blessed New Year to each and every one of you.
Hugs,
Candi
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