Bone Mets Thread
Comments
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Aurora - We know the horror your feeling.. soooo sorry.
Beautiful flowers. Happy Anniversary Kiwi.My bone pain continues to be much better with the Hyromorph Cotin slow release and fast release for breakthrough pain. Chemo #4 (weekly Fridays- so far non off) coming up again Friday. I get about 2 good days before it happens all over again. However it is so worth it to put the raging cancer fire out. My lung mets have to be getting better as is my terrible cough. Praying it also shrinks my liver mets, doctors are most concerned with those. Keep up the fight ladies. Hugs to all. You ladies are such a support - Thank you to everyone.
Cathy
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Terre, Happy Anniversary to you and dh 💑💕. What a beautiful gift from your friend. Wish I could reach in and grab the chocolate! Sometimes we can learn so much from those who face the greatest challenges in life, it's amazing how in the face of such tragedies the human spirit comes shining through. I will celebrate my 25th anniversary this year and my 50th birthday both in the same month so I will officially be married half of my life!
Cathy, glad to hear your bone pain is so much better. And I am feeling good that your lung mets are improving too, especially since your cough is better. I just wish you had more good days before you have to go for your next chemo but I guess we have to grab all the good we can and run with it. Visualizing your liver mets shrinking away too.
Hugs to all, Annie
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Good morning all,Slept in till 10:00 this morning! Shame on me and now enjoying my morning coffee.
Aurora - I'm sorry. I hope your next tx kills those buggers and is gentle on you. Enjoy your Mom's visit.
Terre - Congrats! And what an inspiring story.
Cathy - I take the same pain meds as you and it works wonders for me. So glad your pain is controlled. Praying the chemo shrinks all your mets. And you're right, so much support on this thread. And like Annie said, meaningful friendships have developed here. Hope to see more sisters popping in.
I've said this before but will say it again, don't know what I would do without you all. Wishing peace and pain free day to all of us.
Linda
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wow so glad too see almost everybody posting again. Yea ! I feel such a connection to you wonderful ladies and I love keeping up with how you're doing.
Carla- hope all is well. Please post a short hi when you have time .
Dune - glad you've posted but miss your wonderful daily stories. Post as often as you can feel like it.
Annie - I agree with you when people are off a few days I am always wondering if everything is OK. So glad Deanna is keeping a contact list for us. And yes the sun can make a huge difference for the better in my day too.
Auroaya - you can lurk or post whatever makes you comfortable but we sure would like to get to know you better also. I bet you could tell us some stories with your mom being from mexico. I always love to hear about places I haven't been such as traditions andlufestyles . And some great recipes too I bet. Were you raised in mexico? Do you speak Spanish fluently? I can not but I think it is a romantic sounding language. Sorry about your biopsy results. What is your new treatment? Hope you enjoy your mental break from cancer land and enjoy your mother's visit. My mom died of cancer almost 4 years ago and I would give all I have to spend another day with her.
Terre - happy anniversary !!!!! What an awesome friend with an excellent attitude. Thanks for sharing her inspiring story with us.
Trying to stay calm \ Cathy - hi I don't think I knew your name was cathy . good to know your name. I'll praying agreement with you that those liver mets are shrinking even now as we talk. That the raging cancer fire is being put out by your chemo. Glad to hear your cough is better
So meme pushed back the day she could meet Dh to bring us our boys. So not today but def tomorrow. Man I've really missed them - ea I know I mentioned this a lot sorry. School summer break is halfway over already. I am not ready for school to get started again. Loving the break. Now we just got to think of some fun things to o do thus summer that I can handle. Which is limited walking and can't ride very far.most years We usually spend most weekends at a friends lakehouse. In the boat and in the water all day come home and grill some yummy grub then cold coronas or lemonade on the porch with the radio on and all the family gathered up , exhausted from the day, just sitting around telling stories and laughing. Glorious time. Haven't done that in two years because of the darn back pain and exhaustion limiting me so much. So having a hard time deciding what to do. Any thoughts ?
Hugs all around. I really appreciate you wonderful ladies !!!!
Oh BTW I opened the packet from the funeral home last night and filled out well over half. Feels good to finally be working to get my affairs in order. I know there is a very detailed thread regarding everything we need to do but I gotta go back and find it. I can print it off and mark them off as I go but thinking about starting a new thread. I would rather walk thru it with other people doing the same thing. Would be good support I think
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good morning!
In fact, it is evening in my country. I am from Eastern Europe, Baltic States, Latvia. Small country. We even don not have PET/CT. So I collect information where and how much cost PET/CT or PET/MR somewhere around. I even considered going to India
for cheapest PET/MR (www.petmri.in) but I didn`t have company so I will maybe go to Germany for PET/CT.0 -
Thanks Annie, Patty and Linda. Appreciate the support and prayers! You gals are awesome!Hoping you all good results with your treatments and happy days!
Cathy
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leva. - good evening. Glad to see you post. So you may have to go to Germany? How far is that ? How will you get there ? I often forget how lucky we are in America to ave access to health care. Thanks for reminding me. Have a good evening
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Cathy - returning the awesome compliment right back to you!Linda
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Hi all,
Cathy - you have my good thoughts and prayers too. Hope you have more good days than bad and that the chemo kicks all your cancer to the kerb.
Leva - Latvia. Wow! I think I've only met on person from there and I lived in Vegas for a long time so have met people from all over the place. Traveling to another country for a PET scan has got to just make everything harder.
Linda - good on you for sleeping until 10! I'm envious, but in a good way.
Patty - don't know if this is of value or not, but here goes (another long post from me). My parents were divorced when I was 18 months old. My mom worked at the library Monday - Saturday plus Mon & Wed nights. And my great-grandmother, who was bedridden, lived with us. Mom was 19 when I was born. We had no money, and mom was chronically exhausted. She was healthy, but tired all the time. We had an old clunker of a car, so long trips weren't on the agenda. The reason I'm telling you this is because our options for fun times were limited. Similar to your situation, albeit for different reasons. My grandmother took me travelling every summer as she was a teacher and had summers off. It was a great experience, however, what are my favourite childhood memories? Going to the local park and feeding the ducks with my mom. Reading together, snuggled up on the sofa. Having mom watch me accomplish something (like riding a bike without training wheels for the first time). One of my teachers said to her that it was apparent that she spent a lot of time with me - more than most parents did. This was in the day when I was the only kid in school with a working mom. The teacher assumed my mom was a stay at home mom. But when we were together, feeding ducks, reading, etc., her attention was on me and her time was mine. I've talked to other friends about their upbringing/childhood and they reflect the same concept - their favourite memories are things like their mom teaching them to bake, or playing catch with them in the yard, or going to the park together. So I wouldn't stress about what to do - the memories your children will have are those memories of you laughing together, doing silly simple stuff together, and feeling your love. Just having your attention is enough. At any rate, that's my take on things.
Thanks for the good anniversary wishes! Hard to believe that it's been eight years since we pledged our love in a sacred ceremony involving a pink Caddy convertible, laser lights, smoke, and Elvis.
Hugs to all...hoping for a pain-free day for everyone.
Terre
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WOW Leva - that's quite a distance! and with 2 children. You have all my admiration.Linda
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Patty - The love that transpires through your posts for you children is so strong that I'm sure they can feel it from afar.No more hot water today - my old hot water tank is kaput! Crap - could have used that money on something else. Plumber coming tomorrow. Sigh.
Linda
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leva. Wow that is far over 800 miles. Hoping your brother will go with. Are you children boys or girls? They are very young. Wow. You must be one busy mama
Terre - thanks for the reminders about memories and for sharing some of your background. Sounds like there is def a story to be heard about your wedding with link caddy and Elvis. Sounds like you are fun. Got pics ???
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Patty - I practice Buddhism and my husband is agnostic, so we didn't want the church thing. I lived in Vegas and DH's family are all in New Zealand. We wanted them to see the wedding (they stream it over the internet in Vegas), so our choices were something high end, like Mandalay Bay, where you can get a suitable room (just the room, chairs are extra) for $3000 an hour. Or, you can go to the Viva Las Vegas Wedding Chapel and have the world's tackiest, most camp wedding ever for $600. So that's what we did. I did not walk down the aisle, Elvis drove me into the chapel in a pink caddy. It was quite memorable, funny as heck, and everyone says it was one of the most fun weddings they've ever been to. Every pic of me has my mouth open because I couldn't stop laughing.
Sadly, my computer has sucked the big kumera (as they say here) and I can't access my photos. Have a friend who's going to pull the hard dive out for me so I can retrieve stuff. I have a backup disk, but no clue where it is since the move. We had decided not to unpack much since we're moving again in about 4 months, and the backup disk is in one of the boxes! Once I get my act together a bit, I may post some pics. They are funny.
Linda - bugger @ hot water heater. That's no fun!
Leva - you have my admiration. Wow...two little ones makes it even harder.
Hugs to all,
Terre
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Terre - thanks for sharing. ☺. So how did you Guys meet? Oh so say something like an online match making service. Maybe famers only . com ???? That would be a good story.
Me and my dh met 24 years ago. We were young I was 20 a few months from 21. He was this tall , long haired well kept , muscular, successful 25 year old. I had just gone thru a breakup and had decided just to enjoy life and not be looking for that perfect mate. We met while both plasyin sand volleyball at the local park. He looked hot and had a very outgoing , fun attitude. I was instantly interested and so was he. We watched the sun come up the next morning while we were still sitting at the park. We had told stories and laughed the entire night ( no sex don't think that I am that easy , promise ,). Actually that just made it sweeter. I couldn't believe the entire night was gone and we still had plenty to say. The rest as they say is history. Good time's _bad times and everything in between thru 24 years but I would still go back and pick him again. He makes me a better person.
Makes me feel so guilty to die first and leave him with all his emotions plus taking care of the needs of my boys. Anyone else feel like that ? Surely I can't be alone on this.
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Terre, you never cease to amaze me! In one post, you are so heartfelt and genuine about your childhood memories, I was getting choked up. Then within a few minutes you have me -- and I'm sure everyone else -- cracking up picturing your Elvis-inspired wedding! Oh, I hope you can find the photos for us! And Happy Anniversary! Your friend sounds awesome! Clearly a case of similar souls attracting one another.
Ugh, Linda, I can empathize with the water heater going kaput. Same thing happened to one of our two air conditioners a couple of weeks ago, to the tune of $2600. Those unexpected expenses really hurt when you're also juggling stupid medical bills.
leva, almost 900 miles is quite the long haul to get the care you need! Wow. It hadn't occured to me how spoiled we are here in the US. No more complaining about my 3 hour drive into L.A.
auroaya, I'm so sorry about the positive biopsy. Without trying to flip back a few pages, was it a lump or a rash or ???? What sparked the biopsy? And glad to know your Mother is visiting! Enjoy your time with her!
Hugs and hello to everyone else ~ Deanna
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But PET/CT is not always needed, I mean, we have good MRI and CT diagnostics and World class specialists, too. Just in my case, I need to perform Pet scan to decide about next steps. And My spine surgeon (which is from another European country) asks for exactly PET/CT.
I contacted also MD Anderson Center for Oligo bone metastasis trial, they said - I fit for that perfectly, but I need to pay for everything (as I don`t have US insurance) myself and that was too much for me.
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I know that next year there will be PET/CT also in my city, but it will take some time to find out how it works.
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What do You think about Anastrazole? I see You all are taking Letrazole.
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Leva, I've been on Anastrazole since January 2014. It's been a wonderful drug for me. Very easy, with very few SEs.
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Patty - thanks for the great story of how you met your DH. I know that cats do not equal children, but I do feel guilty about having cancer and leaving DH and the kitties behind. I'm the primary breadwinner and I want DH to be able to keep the cat family together. I've set up a trust fund for care of the cats. If I die before DH is 65, then he'll end up on the benefit (basically welfare) since I can't get much life insurance. And the benefit won't pay for Fancy Feast. So I set up a trust that he will administer and it's for care and feeding of the cats. That's also why it's so important to me to buy a house ASAP. We're looking at lower end houses in reasonable areas with the idea that we can pay it off quickly so DH and the cats always have a place to live. It's a tough one - the guilt. I don't have any magic answers for you other than to say that feeling guilty doesn't change the situation and it's not a productive place to be. That's what I tell myself anyway.
As to how we met - through my having breast cancer. I had been through a really rough year; my family all decided to die at once; mom was first on 01 September and grandma was the last to go on 16 October. Then the guy I had lived with for five years decided he was in love with someone else and they wanted to keep the house. It took a bit to get myself back together. Just after I turned the corner and being reasonably happy again, I was dx with Stage I BC. When my mother was dying, she said she didn't regret thing she had done, only what she hadn't done. I'd always wanted to go to NZ (had friends from there who had moved to the US). No one wanted to go with me. So I decided to go on my own. I was participating in an on-line photographic group (place to share pictures and get critiques, etc) and asked if anyone had gone to NZ and if they had any tips. This guy answered my discussion board question and said he lived in NZ and what did I want to know, etc. So we corresponded via email and he gave me some good advice. He also invited me to a photographic club meet up at a park the day after my arrival, and I accepted. And we clicked. (No pun intended, but it is a nice one.) I spent 6 weeks in NZ. On my last day here, he proposed, and four months later, he was in the US and a month after that, we were married by Elvis.
Deanna - bugger @ air con. Ouch! Exactly what you don't need.
Leva - glad to see you won't have to travel so far in the future for a PET scan. It's not dissimilar here in some respects. For example, if a child has "extreme" medical needs, they typically end up in Auckland, where they have a specialist hospital for children - everything from injuries to cancer. And if you have spinal problems, you end up in Christchurch at the specialist unit there.
I have another stinking cold. My nose is pouring and I have a sore throat. Woke up at 3 running a fever. Just feel like crap. One would think that having recently survived strep throat and tonsillitis that I would have built up some form of immunity to the latest bug going around our office. But no! Whine whine whine. I don't do "sick" very well. And I have to fly to Auckland for two days of meetings tomorrow. And the weather is supposed to be crap. If I keep up my complaining, I'll need cheese to go with my whine.
Compared to what many are dealing with, a cold is nothing. It's just annoying.Back to work...
Hugs to all,
Terre
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Hi Everyone,
New to the Bone Mets thread. I have had repeat radiation. Twice to mets in my upper ribs and twice to T-10 area. Radiation relieved some of the pain but my tumors continue to grow. I had spinal fusion last spring and had two 10 inch rods and screws placed in my spine from T-8 to T12 to stabilize my spine. Spinal compression fractures and rib fractures. My neurosurgeon thought I was at risk for paralysis if I didn't have the surgery. It was a long painful recovery, and I'm glad to be on the other side of it. I had SBRT and IMRT radiation. I can not have any more radiation. Too risky for additional spinal cord injury etc. I would ask the surgeon what he/she thinks about the surgery and risks involved. I'm glad I had the surgery. Just wish the radiation and hormone therapy would have stopped the tumors. So the short answer is radiation can be done more than once in same area but not 3 times.
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Welcome to the group Lindalou. Sounds like you've been through a lot. Glad you've found us, but sorry you're going through this.
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Welcome to this thread Lindalou. That was quite a surgery!Patty, Terre - I love to read your romantic and spicy stories. Almost 3 yrs ago, I'd been a widow for 3 1/2 years and although I had/have super girlfriends, I missed talking to a man (and other stuff - I had libido at that time LOL - can't say the same with Femara now...). So I decided to go online without expecting much of it. I met 3 guys and had coffee with them. I started dating 1 of them. I actually had the guts to call him back after a few days after our coffee. I made it clear at the time that I was not searching for my soul mate, I just wanted male company and do things together. He agreed. A little more than 1 yr into the relationship, he wanted something more serious and move in together. I was getting used to the idea until I was dx stage 4. I told him I would understand if he didn't want to stick around. I figured if you can't take the heat, get out of the kitchen. But he stayed and has been so supportive. He's really a good guy. We didn't move in together. We still have our respective houses - it makes things a bit more complicated but there's always that anticipation of seeing each other again. It's been almost 3 years. Once in a while I broach the subject with him that he would be better off without me, and the answer is always the same. We will go through this together one day at a time. I honestly never thought I would fall in love again after my husband's passing. We just never know what the future holds for us. And yes I feel guilty at times that I am robbing him of happiness. Not to mention the guilt I had towards my late husband. I felt I was unfaithful to him although I know he would want me to be happy. I sincerely hope that when I'm gone, my boyfriend eventually finds someone.
Linda
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That's awesome, Linda. And I'm sure you late husband would want you to be happy. And with someone by your side while you go through this Stage IV crap. Thanks for sharing that!
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Patty, Terre, Lindar, moved by your love stories and saddened by the underlining sentences "when I am gone". Hang in there. In 5 years, hopefully there will be a cure!
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Hello everyone, wow this thread has been busy today. Terre, Patty and Linda, thanks for sharing such personal stories. Terre so sorry about your cold, I sure hope it buggers off quickly. I think you just work too hard, I think you need a little more relax time but you're always so busy with work. Sending healing hugs your way.
Lindalou, welcome to the thread. Sounds like you've had quite a bit of radiation, I just wish it would shrivel up those tumors. I've also had SBRT to my sternum and humerus.
Tomorrow is Canada day here and dh and I are heading to the States for a couple days. We'll be back late Thursday. Terrible Canadians we are but we have a gift package for an overnight stay that dd's bought us almost 3 years ago. We really need a get away. Hoping the borders won't be too busy with the American holiday coming up on the 4th of July, which is also dh's birthday ☺. Try not to miss me 😉. I am planning a little retail therapy as well. Talk to you all soon, hugs, Annie
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I enjoyed getting caught up on your stories. Those few pages went very quickly.
I had a PET scan today and should have the results tomorrow. I just have to be able to reach the doctor between appointments I have: acupuncture and shrink. I'll let you know as soon as I find out. The purpose of this scan was to see if the Taxol is working. If not, she will switch me to something else. If all this pain translates into mets, then it isn't working. That's kind of depressing. It's OK, though. It will be what it is supposed to be.
Hopefully, more of our MIAs will pop in to say hi and tell us how they are doing. I don't know why I have become so unpredictable with my postings. I still think about you all.
Be well. Live well.
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I just wanted to post that I love all the stories! It gives a human touch to all your names. I've had a really long day today, but wanted to say hello to all. Happy Canada Day! Cheers, Dee
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