Bone Mets Thread
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Anita, sorry to bother you, BUT maybe do you think you could ask your DH to find out among his colleagues (or maybe he himself knows) what is the deal with CT vs PET/CT. I think actually a lot of ladies here would like to know. Also important is if someone has a PET/CT isn't the CT part as if someone took a regular CT? Yes, they would have had the added PET but the CT should satisfy a doc that is looking for a CT result no?
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moma, I can feel your frustration. I was going to recommend you speak to head of trial but I see you are already on that. Trials sure do dictate what we can and can't do and MO's and RO's are often locked into that as well. However, it doesn't make it any easier on you or Dani. Do the docs listen to Dani and does she voice her concerns? Hope it all gets settled for her.
Finished my radiation to hip today so I'm glad that is over. No real relief in pain yet but I know from past experiences that it takes a while. RO went over scan with me again. He is a hoot. Always asks me scan image questions like I'm a med student. I'm happy to report that I passed his oral exam!! The rad techs gave me a gift card that entitled me to a free lunch at a local restaurant because this is my 5th time around with rads. How sweet is that?
Thinking of all of you as many are facing scans, uncertainty and pain. Diana, hope this all gets sorted out and you get the medical attention and relief you deserve.
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Wendy, my eyes aren't doing well with all these Tx either. I can't read more than a few pages in a book. It sucks.
Prayers for Dani going out, Mom.
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Hi, vancouverdeb
It's been a little ruff these 2 days. I don't remember being sick when I had it years ago. I just remember being very tired.
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Overjoyed4life - So sorry to hear your not feeling well. I had the same thing happen and lita57 gave me great advice. If you have anti nausea drugs, take them religiously. If you don't have any, call and get some asap. Also, take 2 omerprozol a day, 1 in am, 1 in pm. Stay away from spicy, fatty foods. If you find you are having diarrhea, stay away from fruits and vegetables, keep everything bland and don't forget to drink, drink and drink fluids. It is hard to do but imperative that you do it.
Momall - I feel your frustration and anxiety coming out loud and clear. I wish I had answers, but all I can do is wing special prayers your way for you and D.
Vancouverdeb - If you mean the one in Florida, that is me and dh's favorite day at the beach place! We are about 45 minutes from there!
To everyone having scans this week, I am wishing you well.
Hugs and prayers everyone
Claudia
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I'm in recovery from having my liver biopsy. All went well!!!!
Bab
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Hi all!
Momall, I'm sorry to hear Dani is having such a hard time on the trial with the docs. I don't know anything about trials, but can hear your anxiety from your post. I'm hoping and praying you get some answers soon. Not being able to do things, and taking steps that completely change our lives seems to be something we with stage four face. Prayers for you and for her.
Babs, glad to hear things went well and hoping you feel better soon, and get good answers!
Wendy, I'm doing a little better thank you.
Z, I'm still here, hanging on, I told Mel, by my fingernails, but hanging on.
I'm on an anti depressant. I've never been able to tolerate any of them, because they have a tendency to exacerbate my colitis, making life not worth living. I'm trying Wellbutrin, which so far (fingers crossed) seems to not be bothering me too much. I know I've been deeply depressed since I lost my Mom and Tom, and although I have been seeing a psychologist, I just couldn't shake it this time. AL is going to live with my daughter and son in law. That's part of what pushed me over the edge. It's just one more thing I can't do!!! With the lymphedema, I just cannot handle him, physically on the leash and training collar, and he's figured that out and has been taking advantage of it, one day snapping at me, and at the leash. That was just the end. I cannot have him bite me, especially on my right arm or hand with this lymphedema. So, I had to wrestle with losing yet another thing I had come to care about. I know he's just a dog, but it's the whole picture that threw me for a loop. Thank you to Mel, you have been just so awesome helping me with all of this and the lymphedema and everything. We have just hit it off and I want you all to know she is a wonderful person! Love you girlfriend!
The hardest part of cancer, for me, is trying to work around all my other health issues at the same time. With Lupus, two different types of colitis, celiac, heart murmur, asthma, allergies, migraines, and high blood pressure, all I needed was one more thing. But cancer doesn't wait for any of us.
Scans at the end of August and it's been a year, so am pretty nervous, hoping the Wellbutrin will help with that anxiety level too.
Thanks to all of you who were concerned about me. I think and hope I'm digging out of this hole.
Blessings!
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Gracie~ I love you too girlfriend. We support one another. It's what we do. As long as I have my breath I will be here to support my friends, you have become so precious to me. I am so sorry about AL.I know they become a constant source of company, I pray every night for you. You're someone I will always call my friend. Big hugs and so pleased to see your name. God bless you sweetheart ~M~ Remember one day at a time. One foot in front of the other. It's all we can do.
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Oh Gracie so so nice to see you!!! You doing good girlfriend, you are taking care of yourself. You are right on, the antidepressant should help you. Fingers crossed it will get along with you. You are right it's just too much, thanks for your prayers. I remember you saying how AL was a good companion, it's devastating, but you are doing the best for him also. So little control, then I think WHAT are they thinking??? If I could at least trust, but it's way too late for this. I keep reading the PET/CT is right for her, but gotta get that across. What you went through this year would be tough on anyone, and add this monster, you are a superwoman!! Check in when you can.
Babs now you just sit back and wait. Take it easy a bit, DD also said it was not too bad.
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Gracie, you ARE superwoman! And who wouldn't be on an antidepressant? You hang in there. Let the meds work.
My dd is finally getting results from the Zoloft. It takes several weeks to start working. She'd been battling low grade depression for years, and me getting St 4 put her over the edge. Yep...just what she needed...all her g'parents are dead, her favorite uncle has COPD and CHF and is on death's doorstep, and then my dx. Great life, yeah? Lots to look forward to. Prez Dump's shenanigans didn't help either. She finally became suicidal, and we had to do something. She's seeing a better therapist, too. The one she had been seeing didn't do squat for her.
Thank God I have you guys, and all your love and support.
L
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Gracie so glad to see you!!! I'm glad you and Micmel are there for each other!!!! It's so hard sometimes and we need someone who " gets it".
Momall. Your frustration level is through the roof and I get it. Unfortunately with a study the protocol is the protocol. If it calls for Ct then that's what you get. Maybe Danis regular mo can request the PET CT in addition? I'm not sure that's allowed though.
Just woke up. Feeling fine and will go to work today! The IR did say that I'm a great candidate for Y90 if the trial fails me. I'm happy about that!
Babs.
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Good Morning Everyone,
Been a little busy so I'm just catching up on the threads. Thank you all for the compliments on the NEMO photo. It does look surreal, only because its so deep in the sea and the colors become so different with a flash. I totally feel for everyone with the work issues. It is such a huge adjustment when you can't do what you are used to. I find myself so frustrated that when I have to tell someone what to do, I just wish I could do it myself. From greenhouses to a produce stand with all of 60 acres of picking and selling I feel like I can't do anything labor intensive. Thank goodness I have a big family of brothers and a sister, plus mom and dad.
Bighome, nice photo of the butterfly and the flowers I wish we could grow that but our season is too short up in NYS so I always enjoy going somewhere and seeing those brilliant colors.
I hope I haven't missed too much, sounds like you are all hanging in there like myself. I think of you all everyday, my hopes and prayers that all of us find good treatments that keep us going for a good long time. I'm posting this photo today just because I think you can all relate. I was in Botswana and this huge family of Baboons were fighting and they kicked this youngster out of the trees and he just caught some branches to hang on. It always makes me laugh. Sometimes you just feel like you are at your wits end and then you just hanging in there and things get better!! Hope you get a laugh out of it.
Hugs to all and hanging in there even when you are at the end of your rope!!!
Anita
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Lita WTH are you going through?? You gotta keep it together for her, no choice. At least you were able to see that therapist did not work, that's half the battle, they could really make a difference in someone's life. Let us know how things go, good luck.
Babs, did you get body CT? Or CT of the chest/abdomen? What kind of scan did you do. Happy that you are up and around. Also, are your liver lesions on both sides of the liver or one side? I am thinking of the Y90, can I ask you what does it mean you are a candidate?
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momallthetime I'm so sorry you're dealing with this crap. I had also problems with a trial I was on last year they really keep to the rules I hope you figure out a way around it. When you do let us all know . They give and take away it's the nature of the game. I also had to give us my business so I can understand Dani sadness another part of who we are gets stolen away. But we press on and find something else to occupy ourselves. Dani is a super strong woman and she has you by her side together you will get through this.
Gracie I'm hoping the meds help with the depression . Sorry to hear about your pooch but getting bitten is a no go situation you don't need that . Can you visit her / him where he's going that would make you both happy I'd wager. One of my stupid cats managed to escape from my apartment yesterday morning and I was frantic. Cars dogs raccoons I saw it all. Took myself out for a bike ride crying the whole way and I came home and the little shit was at the French doors. I swear animals are wonderful but sometimes....
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Wendy you managed to make me teary eyed and smile at the same time. Can only imagine your fear when you thought your little one disappeared, ughhh but you got a happy ending. Thank you so much for your words, i am so restrained and patient, think straight jacket.
Lindalou reading back, so glad you done with the Rads, and thank you for your kind words. It's so nice to know you will feel better soon.
Claudia thank you sweetie. it's more like i wanna do the right thing. And above all i would like to catch IT b4 IT catches us, the docs seem to be more like when we get to THAT part we'll deal with THAT.
Anita, we all feel that way I believe, if we could just hang on. Incredible pictures. And if you could read my post above re: the scans, I'd love to hear a professional opinion. I did a lot of reading on Google, but...thanks
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Mom, I simply cannot imagine your and Dani's frustration. You are an astonishing mother. You are so fortunate to have each other.
Anita, love the photo of the baboon hanging on!!
Babs, great news on the liver biopsy....HOORAY!!
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Momallthetime,
I will ask him about the difference. I did ask him once and he said it would take a while, but when he gets home I'll sit down and have him tell me in layman terms and try to get him to explain it for all of us.
Babs, I'm so happy about your liver biopsy!! Good luck with study!! I'm thinking of you. Hang in there for that big baby boy. I never had my own children but took care of all my nephews. All boys. No girls.
Going to work. I'll have the info later today.
Love Anita
PS. It's good to have a radiologist on board!!!
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Thank you Anita. CT's are cheaper, and i believe Onco's that are owned by conglomerates, like Centers, Hospitals etc...have to answer why they are ordering the more expensive PET/CT scan. I know that. That's why they always make you have first a CT then MRI and then the PET/CT. BUT I saw pictures on Google, and there is no doubt that PET/CT are clearer images, and even i saw one where a tumor did get smaller, but the CT could not really read it and on the PET/CT it did. PET/CT lights up with "real" time lesions. We'll have to settle for the CT I know, but it's not the highest modality quality for mets. And i've read in multiple sites that PET/CT could read much earlier when a new lesion appears than it would be caught by a CT.
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Hello Momeallthetime and Everyone on the board.
I got my DH to explain the difference between a PET/CT and CT and the reason why they do it. Here it is in his words as best as he can describe it in our layman terms.
The PET (Positron Emission Tomography) part of the study measures the metabolic activity. It helps identify tumor that can be anywhere in the body. It can identify tumor sites that a CT can not see. It is a nuclear radioactive study. It can also identify possible areas of abnormal activity.
The CT scan is a visual evaluation to try to see the tumor. It is used to visualize tumor that the PET/Scan identifies. The CT scan visualizes to try to visibly see the tumor.
I hope this explanation is helpful MOM, I guess that is why the PET/CT are $6000.00 and a CT is much less. My last PET/Scan I had, insurance said they would not pay for because it was too soon after the first one. I had to pay out of pocket, thank goodness my husband worked for the company and he cut him a deal $3000.00. It is all so crazy. I don't know how people deal with the finances and co-pays alone. Its just a crime that this disease is so expensive!!! It really makes me mad.
Any other questions, I will try to help, my husband is a real trooper and a long time Radiologist 39 years and still working. I don't think I would have survived this far withouthim helping me understand things either.
Have a good day everyone,
Anita
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momallthetime I'm so sorry you're dealing with this crap. I had also problems with a trial I was on last year they really keep to the rules I hope you figure out a way around it. When you do let us all know . They give and take away it's the nature of the game. I also had to give us my business so I can understand Dani sadness another part of who we are gets stolen away. But we press on and find something else to occupy ourselves. Dani is a super strong woman and she has you by her side together you will get through this.
Gracie I'm hoping the meds help with the depression . Sorry to hear about your pooch but getting bitten is a no go situation you don't need that . Can you visit her / him where he's going that would make you both happy I'd wager. One of my stupid cats managed to escape from my apartment yesterday morning and I was frantic. Cars dogs raccoons I saw it all. Took myself out for a bike ride crying the whole way and I came home and the little shit was at the French doors. I swear animals are wonderful but sometimes....
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Is any body else having problems posting stuff or am I just totally technologically inept...
So adding to Anita's little monkey hanging in there I wanted to tell you ladies about I woman I met the other day, I may have mentioned her before and if I have sorry for the repeat. She is sixty years old she paddles on another boat but we ended up talking because she is also stage four. She has had extensive liver mets and lung mets. She did do chemo a few times early on in her diagnosis and was then cancer free. She has been plugging along for 17 years. She is still very active and just goes and sees her oncologist every four months for a scan. We can all dream can't we ?
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Wendy-if you did tell us that story before a repeat is certainly welcomed- Hope is something we always want!
Anita- loved that picture! It reminds me that we are all just hanging on from our highs (not really very high) to our lows. This is some kind of roller coaster we're on.
Momall- My MO always does Pet/CT scans but the study I'm on now called for a CT scan with contrast for the chest and abdomen areas-as I'm sure that is their protocol too. Knowing my MO , if my TM's jump high and the next CT shows any changes she will then order a PET CT to make sure what I'm dealing with. But first we MUST follow the protocol. The IR said I'm a good candidate for the Y90 because my progression has been in the liver. I know it's in a few sections of the liver top and bottom. I honestly never looked up the areas that they state on the scans- some things I don't need to know! Seriously, since I don't have any symptoms, I never looked it up on line.
How is Dani feeling though? Sending hugs and prayers!
Babs
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Anita thanks for the trouble really, it's so sweet of you. The way I see it the PET/CT IS more detailed. And THAT what keeps me up at night.
Babs, thanks for the info, very helpful. Dani was today there for her BT, she gets the trial drugs every 3 weeks now and BT every week, and still follow up with the opthamologist and Echo. So NP made a deal with her, this time she will get a CT as is the protocol and next one a PET/CT. They know it's screwed up, but it's a stupid rule they have to follow. It makes sense what you said if God forbid it will not be favorable, we'll ask for a PET/CT.
I wasn't sure that Y90 was done with scattered lesions, i thought only if it's localized, i don't know then why Onco was so against it, I feel like maybe I should have pushed more for it.
Wendy I like that woman!
I bumped into a talk from Dr. Kwon he deals mostly with prostrate cancer he is connected to the Mayo Clinic, and he said imaging IS everything. And he is a big believer in getting rid of stuff as it comes along, and not wait for progression. He disagrees with most doctors. I agree with him. He says these things multiply. Period.
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Great news babs, I hope you are on to Y90!
Linda, Hope the rads kick in soon and you are turning somersaults soon.
Gracie, We all know AL is not just a dog, he is part of your life and family. That is so hard and as you said just another thing you have to give up. My dog has been being weird too like she knows I can't handle her so she is acting up a bit. Makes me sad. My doctor gave me Prozac which I hesitate to take simply because it says can cause nausea and fatigue which is the last thing I need. Let us know how the Wellbutrin does.
Lita, OMG, how you endure with such grace and humor astounds me. I hope your daughter finds the peace she is seeking for you all.
Wendy, that little rascal! Glad you found your sweetie! I also find it difficult to read for long spells now which is very frustrating as I am an avid reader..
Mom, You have your hands more than full with all of this. I hope things settle down for you. It is so hard to give up your occupation too. I am on the brink of resigning my job which is such a hard decision but just don't feel I can do it anymore. Trying to figure out finances while I feel like crud is not working too well....
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Lita, I can relate to your DD's situation as hers was also my DD's a couple years ago; my dx certainly didn't help either. Here's to them both continuing to do well.
Anita, please thank your DH for letting us "use him" for his expertise and explanations; very appreciated.
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Gracie - G0 girl. One step at a time. I am so happy to see your post. Pain levels?
Hugs all around for everyone. A lot of challenges overcome on this thread these past few days. Really tough, be we are getting it done, ladies.
Keep going ...
>Z<
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Bigbhome - Florida! I wish I meant Florida - I'm in the Crescent Beach near Vancouver, Canada - more rain and a little chillier than where you are.
Overjoyed - Sorry to hear about the nausea. That's no fun. I've never liked the waiting - being patient and waiting to see what effect the drugs might have - hang in there..
Wendy - 17 years?! That's amazing - do you know if she did anything special?
Photogirl - the pic of the baboon put a smile on my face - thanks for sharing.
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Vancouver I asked her she said nope just went through treatment , I asked her about sugar and booze and she likes her wine and cookies. So no nothing special she would be a good candidate for that trial you are on Lindalou. Why do some make it so long? She is a happy person very positive maybe that's it idk.
You know that nagging little voice we all have in the back of our minds "How long will I have ? will this treatment work and if so for how long? Will I see my grandchildren? You know that voice maybe she doesn't have it. I just bought a book "You are the Placebo" I'll let you all know if it is of any use. I can't help but think the mind plays a huge roll in our success or lack of
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Wine AND cookies?! I want wine and cookies! Okay.... so I still love my glass wine but I've nixed the gooey chocolate-y yum yum yum fresh from the oven cookies my kids make..... oh so sad. That nagging little voice..... maybe we need a drug for that.....?
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Greetings to all you wonderful people! I am delighted to say I am still in the land of the living with all my mental faculties in place. Four weeks have flown by. We drove 4,335 miles between Northern Indiana and Eastern Oregon. We had a fantastic visit with my brother, which was the whole point of the trip. We also enjoyed the Tetons and Yellowstone. Two things on my wish list got covered.
Following are pictures of our trip and some wonderful things that happened right after we got home.
Supper with my brother's son and daughter. It was serendipitous that they were visiting at the same time.
My 80-year-old uncle and his wife drove 8 hours across Oregon just to see us. It was wonderful.
After spending two days visiting in prison, we headed off to the Tetons. We spent one night in a cabin. It was so nice to settle down and rest for a bit. We did our own food and just relaxed. My husband loves photography and is very good. He took three hours from dawn and just drove and took pictures to his heart's content. This is outside the cabin, about 2 miles south of Yellowstone.
Just a sample of his work.
Old Faithful obliged us during lunch.
My one walk was out to the Fountain Paint Pot and its friends. 8,000 feet and I didn't get on really well. I like breathing! The sun was really bright, hence the less than cheerful aspects.
i came home to another amazing experience. I've been working on my Master Guide for my Pathfinder Club. It's the highest level that can be reached and it takes a lot of reading and other time to get done. I haven't finished the material, but they Invested me anyway. It's such an honor.
After I got home that day, the best of all came to me. My sister, with some assistance from our mother, rapidly finished a quilt she had started for me. I saw all the bits and pieces before I left for Oregon. We were gone 10 days. The whole thing was completed by the time we got back!
This is with my mother, showing off the back a little. It is all quilted with notes and treble clefs. Because of the way it got done, it is completely reversible.
Myself, my sister, and our mother.
The title of the quilt is "The Music in Me". There couldn't be a more appropriate title for me.
Detail of quilt.
Just wanted you all to know how I'm doing and to encourage you. We take one day at a time, but we look ahead and set small goals of things we want to do. That's how we keep going in good health and cheerfulness. Blessings on each of you.
Raewyn0
