Bone Mets Thread
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Hi Romansma. Since I started Gemzar and Carboplatin, the ugly nodes on my chest, (huge, bulbous, and inflamed) are flat! You can still see the dark skin there, but the cancer that was living in those nodes has died.This is after only one cycle I am hoping this external sign also reflects what is going on in my liver, lungs, and bones. I had a lot of queasiness, so I have all sorts of things to help with that: zofran, a 3 day patch, and ativan (which had the opposite effect than what it should have). So, you can do it!
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Lynnwood196: Most insurance company will not approve PET scan for cost reason, and will only approve a bone scan every 3 months. In my experience, CT has shown more details of my bone mets than PET or bone scan did. so recently my local Onc has only ordered CT scans. However, I do have CT/Bone scans at MD Anderson annually for second opinion. You should ask for bone scan periodically, but not getting this time with CT may not be a worry.
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hi Romansma
Sorry to just jump in but I saw you are in SC. I lived in Long Beach and LA area for 15 years until last week when we moved to the East coast to be closer to family . I had my treatment at USC. ( I used to work there so I knew all the doctors) and I worked for Cedars Sinai since 2011 so I know the doctors there too. My experience as a patient at USC was excellent. I only saw the doctors as Cedars Sinai as a second opinion but my experience with them was excellent too. I don't know about the trials available at USC for your type if cancer, but i know that Cedars has a Center for experimental cancer therapies that has a bunch of phase I and II trials with the newest drugs. You might want to inquire there. I'll find out the exact name and contact info.
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What great news, Dune! So happy to know just one cycle the huge nodes are flat!
Hi, everyone! I've been lazy lately, overwhelmed by everything and frustrated by not doing much. But mowed the lawns today!
Lynnwood, I think you should ask for a bone scan added in order to compare with the baseline initial one to see if there is any change or not. I remember Deanna said that only the same kind of scans can be compared. But may be your onc is mostly concerned with soft tissue clearance. Still.
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good afternoon friends. I am doing well. My and DSS actually got out of the house today and not going to Dr or hospital. I always feel SO much better mentally when I get out even for a short ride. Nothing like singing along with the boys and dancing in our seats. Sillyness required. We ran several errands, ate at O'charleys, and loaded up on candy at the store. We rarely do candy but tonight we are having a family movie night. Dh is out of town for hunting stuff. We are gonna make pallets on the living room floor and all sleep together. We are gonna watch dolphin tale 2 and something else ( I forgot what they picked ) and popcorn and candy for supper. Neighbor kids have been over swimming all afternoon so hopefully they won't be too tired and fall asleep on me. I bet all that sugar will help energize them.
Hope - enjoy the concert tonight with your son
LindaE - how frustrating. From stable to actually met in cervical region. I actually read this way too much on here. I am very glad here I can pull up all my med records online and read them for myself - even if I have to use Google for some words.
Kartz - nice new avitar. Thanks for sharing
Dee - hi always glad to hear from you. Glad you and dh going to have some fun before radiation starts. Visiting your friend has to make this all seem so much more real. You are a good friend.
Annie. - I agree. So many days I just want my mommy. I want to ask her how she made this all look so much more easier than it is. A world without cancer sounds perfect to me - hopefully one day. Our children's hurt is def heart breaking. Glad she is close enough to share her fears with you.
Deanna - I too would love to find a support group for children but no luck so far.
Dune. -how Exciting! Ugly nodes are flat after just one tx. Die cancer die. Woohoo!!!
Hugs all around and hello to all I missed
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Deanna, thanks for the info. I do have a copy of Bestbird's guide and I finished reading it this week. I'm also still waiting for a call from USC on a second opinion. Not sure how long I will have to wait. The Androgen positive result came in as a surprise yesterday. I'm still not sure I will be able to get the treatment off label or how long it will take to get an answer. Sooooooo, I really don't want to delay treatment for much longer. I've been off treatment for 3 1/2 weeks now and before that, it's obvious my treatment wasn't working for at least the last 3 months, maybe longer. I believe the cancer has been progressing and I need to get moving on something if I'm going to have a chance of slowing it down. Wish I knew what the right answer was! For now, Gemzar is the proven treatment and unless something better comes along, I'm preparing myself.
Just got to a hotel in LA. Taking my son to Imagine Dragons tonight. TGIF all!
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Hi Romansma,
The program is
Experimental Therapeutics Program at the Samuel Oschin Comprehensive Cancer Institute
Look up Dr Monica Mita, she is co-director of the program and breast cancer specialist . Hope this helps.
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Dune,
So glad to hear that your tx is working. Take it easy and enjoy the victory.
Greetings to everyone else. I think of you often!
Caryn0 -
Thanks for your support ladies,
Deanna - I didn't have the brain scan yet, but hope your cheering YAY will become true. I was the one with the ticket - thought about the cancer card but felt a little guilty - I really missed that stop! I thought mea culpa was more in order.
Dune - that's great news!
Patty - sounds like a "sweet" evening. Enjoy!
Romansma - Good luck with your next tx!
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Lynwood - My Onc usually orders CT and bone scan every 3-4 months. While my current Onc was on mat leave, the other one didn't. I prefer the 2 of them on a regular basis.
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Ibgal, I found the information. Where you giving this to me for 2nd opinion options or for the clinical trials? I see she is heading up a phase 1 trial for Vantictumab. My brain is a bit slow these days! Thank you for the info!
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Good Morning All, A friend of mine who passed away had the opportunity to take her children on a trip through Inheritance of Hope. I don't know a lot about the program but I understand it is for children and families dealing with a parent who has a life-threatening illness and offers a cost-free vacation. She went with her family and found it wonderful. I think families get to interact with one another and kids get to share.
LindaE...I've had similar reports that indicate a progression when my onc didn't mention it. I asked the radiologist about it last time I had a scan and he said that radiologists have to report any suspect finding on a report..... and that different radiologists read/report differently. Often oncs don't mention it as it can be a flare or it is so small they deal with the most important lesions first. I still ask for all my reports as I'm sure you do. I like to stay on top of it.
Hope...how was your concert with your son? Hoping the new pain med regime allowed you to enjoy your time.
Patty- glad you are feeling better
To everyone else.....hoping you all have a good weekend as pain free as possible.
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Thank you Lindalou
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Hello to everyone,
Lynnwood, regarding bone vs CT scan I always find it so confusing. Last CT scan I had the radiologist said my bone mets were healing so I'm assuming it does show bone well enough for them to see what's going on. That being said I've been having bone scans every 4 months and a CT every 6 months. My mo said they need to do the bone scans because they are more precise in showing everything going on in the bones. Best of luck, praying your scan shows good results.
Dune, I'm ecstatic that your treatment is working, shrinking nodes is a good sign! So happy you checked in, I always think of you and I'm glad you've been out and enjoying yourself.
Deanna, I hear you on getting overwhelmed easily, story of my life lately. Do you sell antiques?
Patty, so glad you had a great day with the boys, feels so good to just do normal stuff doesn't it? I had a mom and daughter outing with my friend and her daughter last night, dinner and a movie and it was alot of fun although my back is so sore from sitting in those uncomfortable seats. My back has been so weak lately, starting to wonder if my MS is flaring. Patty I watched my mom die of cancer too, it was so hard and I took care of her everyday. She died of brain cancer and I had to get her out of bed every morning but she still would fix herself up everyday, put on her lipstick and take care of how she looked. I always found that amazing and inspiring, so everyday no matter how terrible I feel I get up and put my face on, sort of a tribute to my mom.
Romansma, praying you get all the answers you need real soon so that you can get your next treatment plan underway. How was the concert? I hope you had a great time and weren't in too much pain.
Hi Linda, Xavo, Lindalou, ibgal, Cling and everyone here!
Caryn, I read about your skin biopsy on another thread, praying it turns out to be nothing and if it is that it can be easily treated.
Hugs to all, Annie
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Annie,
Thank you. Won't have the final word, of course, until,the path report is complete, but derm seemed fairly sure it was basal cell. This is highly treatable, and she actually did more than a biopsy by excising it and using electrodessication (I think that's what it's called), so no further tx should be needed.
Caryn
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hi Romansma, you are welcome. I was thinking of the Cedars option because they seem to have a number of clinical trials and my understanding was that you might be interested in those. Good luck.
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Thanks Ibgal, great information. When I looked before at Cedars, I didn't see all that so it opened my eyes and made me feel better about that as an option. I was told USC would call me with an apt this week and they have not. Might be time to try Cedars now. Really wanted to get in this next week.
The concert was awesome. My son was so excited. He told me his hands were shaking earlier in the day with excitement. I got us a hotel in LA so we could get to LA early (we are about hour and a half from The Forum). We checked in around 4 and I rested for about an hour and then we went to dinner and off to the concert. I was achey and the stairs were tough, but it was all worth it. Imagine Dragons put on a great show and I think they made a fan out of me too! The guys next to us were maybe 30ish and they were singing all the lyrics at the top of their lungs, they were so excited too. It was contagious! My son got his first concert shirt. Best of all? I got to be there with him for his first concert and when he's 30 and is reminiscing about his first concert, he will remember his mom being there with him singing along, dancing, and having fun!
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that is awesome, Hope! What a great picture of you with your son. That will definTely be something neither of you will ever forget.
So, why no UCLA on your second? They ranked exceptionally high on the recent U.S. Report.
Stefanie
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Would love UCLA but being told my insurance won't participate. I would like to establish an ongoing rapport. I'm good with paying out of pocket once, but not ongoing.
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Patty good to hear your home and hope there are better days ahead for you ... Hugs.
I have some great news to share. My one and only daughter is engaged to the most wonderful handsome man and I am so excited about it. My dream has always been to be a gramma. She promised one asap after the wedding which is April 30th. So hope I'm well enough to be the mother of the bride. She lost her dad so either my son or I have to walk her down the Ile.
Hope everyone has some great news in their life and happy days ahead. Enjoy every minute you can.
Love to all,
Cathy
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Hi all,
Just a quick hello.
Romansma - what an amazing picture and experience. You two look fantastic! The concert sounds wonderful. I rather like their music too. So happy you got to do this with your son. And happy you are getting a second opinion.
Patty - glad you're feeling better. Was so worried about you when you were back in hospital. Nice to see things going better.
Linda - so sorry about the "surprise" mets.
Great info, Lindalou! Thanks for sharing it.
Deanna - hope you get some down time - not fun feeling overwhelmed.
Dune - happy the treatment is working.
Tryn - Congratulations! So happy for you and your daughter and son-in-law to be!
Xavo, cling, lbgal, Annie and everyone else (no disrespect intended here, just crap memory) - sending hugs and hope.
Terre
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Hi All : I'm so glad that you're getting family time in ! My mother -in -law has a saying, I'm trying to look positive ! That's my favorite saying now when people tell me I look good ! I dress up and put on a little make up, just to go to the corner store ! It helps me to be sort of normal. I find that the only thing that helps my aching bones is a hot Epsom salt bath with baking soda and green alcohol ! I went grocery shopping the other day and didn't realize that the shopping cart was raggedy until I had filled it up ! There was no way that I was going to transfer all that food to another cart ! I think I should have in hindsight ! It was like pushing a 500 lb. elephant through the store ! I paid for it that night .I felt like I had been beaten with a baseball bat ! The only thing that helped was an Epson salt bath.
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Everyone sounds cheerful this morning!
Patty, glad that you are doing well now. You do not have to change your treatment, right? Hope so!
Romansma. nice picture and beautiful son. We used to do the same thing in NYC for concerts. Totally fun!
Linda, is it possible that the mets has been there all along, and is just newly mentioned? That will be no progression, right? Have you checked your previous records (better, the pictures)?
Everyone, all, have a great weekend!
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Love the photo of you and your beaming son, Hope! Thanks for sharing it, and hope you're feeling okay today after that big night out! I'm sure the music is still reverberating in your head today! If you decide to go to Cedars and want any firsthand knowledge about the oncs, I'd be happy to put you in touch with my friend who works there. She's a bc survivor, and has also worked at The Mayo and is very knowledgable.
Cathy, what wonderful news, and so sweet that your daughter is in tune with wanting a baby right away! I'm so excited for you all!
Dune, great news about those flattened nodes! WoHoo!
And Patty, hooray for your much improved energy level!
Happy Saturday to everyone!
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cathy. - how exciting !!! Glad you will be at the wedding and glad this is def something to look forward to
Hope. - great pic. So glad you got to take him to his first ever concert. Are you exhausted today ?
I am completely exhausted from yesterday. Seriously over done it but look at the memories I made for my boys. Back pain has me barely ale to move today. Not sure who asked but yes I still have to change tx. Waiting on pet scan then mo appt is 8-8
Hugs to all
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Hello everyone. And congratulations Cathy. Your joy pops out from the page. And Hoe, what an awesome picture! You are right. He will always remember his first concert and that you were there. Mine was Jesus Christ Superstar (sort f concert ), and I was with my mom, sitting to the right of her.
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Patty and Hope, What beautiful memories you are making. I just realized that you both need to make a change in your treatment, I hope you both find something to kick cancer's butt.
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awesome pic with your son Romansma! We are all happy for you!!!
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hi all
I havent posted in a while. This thred moves so fast. I do keep up reading it and. I am inspired by everyone.
Patty so glad you are home and able to enjoy your boys. I hope you are getting your pain addressed by doctors so you keep the best quality of life.
Romansma Good luck with your second opinion. I hope you find more hope.
I continue to struggle with pain but recent pet scan shows cancer still shrinking. I assume it is due to AI side effects. I may discuss changing AI with MO on Tuesday but I hate to move away from something that is working..
My exciting plans upcoming include my daughter and I are traveling to seattle to see Taylor Swift. It should be tons of fun.
Thinking of you all and wishing we all continue to build great memories this summer.
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Ok. I had to post a picture too. This is my daughter and I at a tomatoe throw by soldier field. I will do anything that's funny. Believe it or not, she is 24 and married. Looks like a teenager doesn't she??0
