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Pet Scan results-Not what I hoped for


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Hi Fellow Warriors, I got the results of my pet scan after chemo, immuno and SBRT radiation treatments and I was hoping for NED. Well, I didn't get that. My Tumor went from 1.3 x 1.6 x 1.0 cm with SUV of 5.6 (last scan) to this scan showing  2.0 x 2.4 x 1.5 cm with SUV max of 9.9. The good news is there was no evidence of metabolically active metastasis. I an Onc appt Thursday to talk. I'm wondering what we are going to talk about. I'm stage IV so surgery is out. I hope I don't have to go through chemo again. I feel that i am just getting my life back somewhat (covid stops most things) and I know it sounds stupid but the thought of losing my hair again makes me sick to my stomach. I guess if that's gonna happen that's what is gonna happen. I am currently on Keytruda and have been since I started with chemo back in March 2019. I'm nervous but I need to kick this things *ss. Thanks for listening. Peace, light and great scans for all, Claudia

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Actually, before this latest cancer was diagnosed, I had made a decision to let my gray grow out. I'd been wanting to do that for a while, but because my job involved traveling and presenting training

Hi all, I went to my God this morning and Rower Michelle you were right. He wants me to see a thoracic surgeon. The cancer in my hip has been gone for over a year and he feels that I might be a candid

Good Morning Everyone,  Good morning world, Good morning sunshine.  God called early this morning.. I'm cancer free!!!!!! I'm NED!!!!! He said I'm in remission!!!! They got it all!!! I'll be stay

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I was on Abaraxine and Carboplatin with Keytruda as I remember. I only made it through 4 months of that before my Onc took me off because it was killing me but I've been on Keytruda ever since. . My pet scans after that were good, good, good, not so good, good, good and now not so good. 

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Crap Claudia,  not the news anyone wants to hear.  You've been feeling pretty good too right?  Sucks.  I'm wondering if they plan to do another biopsy to asses how to match up your chemo options?   You know, I'm not so sure about surgery being out of the question anymore.   I've seen a few (granted handful) of people with Stage IV get surgery if there are no other organs or bones involved.  Doesn't hurt to throw it out there as a possibility (even if it's a long shot).   

Looks like my Mom is going to be headed for another round of chemo and she's not all too happy about it since she just spent a fortune on a perm (It's a Jersey thing, even the old ladies have big hair).      

Maybe they can come up with an immuno cocktail for you (and keep your hair).   Fortunately there's lots of options out there, including getting a second opinion if you need one.   

Hang in there my friend, 

Michelle 

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LOL Michelle, I'm from NY and we like big hair too! Maybe that's where I get it from. I wanted wish your mom the best luck possible with her treatment. Thanks for understanding about my hair and also for telling me about the possible surgery option. Not sure I would want to do that. I've heard too many stories about people with stage IV and dying from surgery. Probably old info. I'll wait to see what God (that's my nickname for my onc) has to say. He is brilliant and I trust him completely. I'm trying to stay positive which is my natural way until I get crap pet scans. I'll let you all know what happens on Thursday. Peace, light and great scans to all. Claudia

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Hey, Claudia,

Sorry to hear about the disappointing scan. Does your god have a preferred sacrificial rite? I may be losing my hair soon and my daughter who's come to stay with me during treatment is drooling at the prospect of giving me a mohawk and green hair or something as a prelude. So I might be able to offer up some hair for a good cause, lol.

Hang in there--hopefully your deity has a plan B that will get you back on track.

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Lexie, not sure about god's sacrificial rite but wouldn't be surprised if he did. He says he has his "bag of tricks" so I hope there is something in the bag that will help me. Oh I would love to do purple hair and if I do lose my hair this time I very well may do that. I am naturally pretty grey but I color it dark. My color my whole life. Good luck with your treatment. Hope it works and you get to keep your hair. I hope you are right and my deity has his bag of tricks ready because I am raring to go and kick some cancer butt. 

 

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Actually, before this latest cancer was diagnosed, I had made a decision to let my gray grow out. I'd been wanting to do that for a while, but because my job involved traveling and presenting trainings, I had to avoid the awkwardness of growing it out (I was NOT gonna pay exorbitant salon fees to gradually color my way through going gray). When the pandemic hit, I decided it was the perfect time to do it, so I haven't colored my hair since early March. Here's a pic from a couple of weeks ago: 

IMG_0421 (1).jpeg

Those are my kiddos--son has gone back home to Colorado but my daughter's staying here till the end of the year, at least. 

 

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Hang in there, my wife had the same treatment and she to had good results until she didn't. The triplet shrunk the tumor and she was just in Keytruda then the next scan showed it grew back bigger than the original. She did 2 rounds of chemo, 1st round put her in the hospital for 5 days. Second round the dose was lowered and she did better, then the Oncologist said there was a new targeted therapy called Tabrecta which is a pill you can take at home. She was scanned a few weeks ago and the Dr. said her tumor had shrunk more than 1/2. Keep at it until they find what works best for you.

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Hi all, I went to my God this morning and Rower Michelle you were right. He wants me to see a thoracic surgeon. The cancer in my hip has been gone for over a year and he feels that I might be a candidate for laparoscopic surgery as my lung tumor is only 2 cm. He's got a guy that is the only guy he wants me to see about this. If the surgeon says no then it's either "light and short chemo" (there goes my hair) or a total change of treatment drugs which he does not seem to want to do. He feels that the Keytruda has been very effective in keeping the cancer away from the rest of my body. I would be thrilled to have the surgery as it would get it the hell out of my body. My God onc is making the arrangement for the visit so I don't yet know when it will be. I'll let you know what happens. Please keep me in your thoughts. Peace, light and great scans to all, Claudia 

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Alright Claudia!  That’s a fantastic option which puts you officially in the trail blazing leading edge of treatment.  I love your oncologist!  Remember even if this guy has reservations, a second surgical opinion is always an option. 
 

PS You made me smile- as you know my parents are still in Jersey, my Dad who is the least handy husband on the planet (no joke) always says... I gawtta guy..... maybe this is a good omen! 

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Just now, LexieCat said:

Well, sounds like good steps toward figuring out the next move. Would be great if you could get the surgery--I found that minimally painful/inconvenient.

Good luck, and keep us posted!

Hi Lexie, I didn't realize you had this surgery. Thanks for letting me know about your experience as I am scared and happy all at the same time. Scared that the surgeon will say no and happy that he might say yes. LOL Nice to know that it wasn't that bad. The waiting is the worst. Take care, Kid. Be well. 

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6 minutes ago, Rower Michelle said:

Alright Claudia!  That’s a fantastic option which puts you officially in the trail blazing leading edge of treatment.  I love your oncologist!  Remember even if this guy has reservations, a second surgical opinion is always an option. 
 

PS You made me smile- as you know my parents are still in Jersey, my Dad who is the least handy husband on the planet (no joke) always says... I gawtta guy..... maybe this is a good omen! 

That sounds like a good omen to me. Thanks for suggesting it Michelle.

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I agree with Lexiecat that laparosscopic lobectomy is easy (as surgeries go). I would light a candle for you but we're not burning ANYTHING in the house these days due to the wildfire smoke in the air, which is seeping in. So I'm sending this candle instead.  Bridget O

 

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15 hours ago, BridgetO said:

I agree with Lexiecat that laparosscopic lobectomy is easy (as surgeries go). I would light a candle for you but we're not burning ANYTHING in the house these days due to the wildfire smoke in the air, which is seeping in. So I'm sending this candle instead.  Bridget O

 

Bridget, thank you so much for this candle. I love it. I appreciate you all so much. Thank you for all of your comments and uplifting words. I woke up this morning really hopeful about this surgery. I hope "the gawy" says yes and I hope it works. I'm more positive than I have been in a very long time. Thank you all. Peace, light and great scans to all, Claudia

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Perhaps it could be pseudo regression. I've heard that treatment can cause swelling and make it seem that the cancer has increased when it hasn't. You said that there's no metabolic activity. Surely if the tumours had grown, there would be metabolic activity. Radiation can often cause swelling. It's something you should ask your oncologist about as it could be a possibility.

I'll keep you in my prayers. Even if pseudo-regression isn't the cause, it seems like you have so many treatment options available which is fantastic. It seems like there's so many options available; if one option doesn't work or stops working, there's plenty more treatments to consider.

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Hi Catlady91. I was hoping for that myself but alas it was not to be. The tumor that is left is tumor. My God (Onc) said that he feels that the Keytruda is keeping all mets at bay. I will continue the Keytruda I am awaiting the call to set up the consultation with the surgeon. I want this so bad I can taste it but at the same time terrified as to what it will be like. I wish I knew more.  Thank you for your prayers. I do appreciate it. Peace, light and great scans to all, Claudia

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Hi Claudia,

If the surgeon doesn't want to do the surgery, don't throw in the towel--you could always get a second opinion. Laparoscopic surgery is pretty easy, as surgeries go.  I came out of the anesthesia perky and wanting lunch and was released from the hospital the next day. I'd prefer it to chemo any time!

Bridget O

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Hi Bridget, Thank you for your post. I'm still waiting to find out if it is the way to go for me and if it is I hope to be just like you!!! Thank you for putting some of my fears to rest. Peace, light and great scans to everyone, Claudia

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