Bone Mets Thread
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Hi All!
DH & I are back from a trip to the Okanagan, Kelowna, Penticton & Osoyoos. The weather was spectacular, it was top down every day. We took all the back roads around the area, visiting several wineries and basically enjoying each others company while we can.
Dune, I'm sorry that you're dealing with progression, hopefully your Dr's can get it under control & stable.
Patty, I cannot believe that you are still dealing with this, you poor thing. It's got to be just kicking the daylights out of your body.
I tried to keep up with the threads while I was gone but didn't do a very good job of it. Hope everyone else is good! KCM, hope you got all moved in & I see that Linda is still dealing with winter, you better come out here & visit the interior of BC!!
Hi to everyone else... Cheers, Dee
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gg. - welcome back. So glad you had a great time and made some soecials memories
Dune - checking on you.
Hello snd hugs to all feeling too miserable for individual responses but hugs to all
Today I slept most all day. Which was better than vomiting for sure. Feeling a little better just so sick and tired if being sick snd tired. Trying to stay positive. No progression. Hoping the thyroid solved this problem. Of course no one has days that but I am hopeful. Thanks for all the support ladies. Yes I am waiting in an appt at uams in little rock for a 2 nod opinion.
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GG27 - Welcome back! I was wondering about you - didn't remember your little get away. Glad you had a nice time. Hope the wine was good.Linda
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Good on you for second opinion, Patty!
Welcome back, Dee! Sounds like a great trip!
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Ahhh...GG...my DH was director of US Customs for northern border & I tried to go with him when he'd visit the ports....so absolutely gorgeous! I'm sure you had a marvelous time soaking in nature's beauty...and being together!
Woohoo Patty...we'll be waiting for a second opinion that gives you a break from feeling miserable!!!
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Wow -- this board moves so fast! Sharon - thanks so much for the detailed post about your story. So similar to mine.
My PET Scan never happened!!! Insurance denied it at last minute. My MO even discussed my status with their MO. Still denied. Said I wasn't "advanced" enough. So I'm to get a Bone Scan/CT Scan this Wed. If, after that my team doesn't get the info they want, then I can have the PET. Sounds like a lot of radiation to me!
Thanks to all that have welcomed me!! You ladies sound so sweet. I'm looking forward to getting to know you all. I 'll try to post often, but for sure I'm always reading your posts!!
Have a great week
Bev
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Bev same thing happened to me with the PET grrr those insurance companies! First Medicaid denied it and I had the ct and bone scan, which came back stable, but my tumor markers keep rising and I;m having more pain than usual so I bought new insurance and I'm scheduled for a PET on the 29th, fingers crossed it goes through the insurance.
Aurora
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Bev, my usually great Cigna PPO has yet to approve a PET since my re-dx, insisting that a CT is adequate. And don't be misled by the "peer-to-peer" review stuff. A heart surgeon acquaintance reported this conversation when she called an insurance company for a peer-to-peer review regarding a denied procedure:
Person at insurance company introduces self: "Hello, I'm your peer."
Heart Surgeon: "Hello. Are you a heart surgeon?"
Person at insurance company: "I'm your peer."
Heart Surgeon: "Yes, but are you a physician?"
Person at insurance company: "No, I'm your peer."
If it wasn't so sad, it would be even funnier than it is!
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It must be very difficult for my mother to watch all this happening. Shhhhh. Don't tell anyone, but I think she is losing her mind. LOL. She tiptoes around me acting like I can't do anything, but she won't talk about what's going on. She kept it together at the hospital, with making appointments and getting prescriptions, but she confuses the hell out of me by interrupting to ask the doctor one thing while I'm seeking an answer to something else. Now, LOL, she doesn't want us to open and close closet doors too often. They are bifold doors. Simple to put up. I pay her $700 room and board, so we can certainly replace the doors if that should actually need to happen, but OMG, I have to make sure I condense my trips to the closets. She has totally lost it!
I bought a bunch of scarves from TLC today. I definitely wanted to be prepared with the caps that catch my hair as it falls out at night. I think I should get a really short cut right after starting treatment. That way the pieces will be smaller and I will be better used to seeing myself sort of bald. What did you all do to deal with this? I'm just trying to get myself as physically and emotionally prepared as possible.
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Deanna,
That conversation really is funny, save for the fact that it really happened. Sorry that some of you are having insurance issues. How many people would want to get a PET scan if they didn't need one (ok, maybe a few)?
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Not as critical or drastic, but my GP wrote me a script for my nonfunded (i.e., I have to pay a fair amount for it) arthritis meds. I misplaced the script. Asked for another one. Had to jump through a billion hoops to make that happen to verify that I wasn't getting multiples to fill and sell on the black market. Black market generic Celebrex? Oxy, I could understand. But Celebrex???
Good luck to those needing PET scans. I haven't ever had one either, and doubt that I will get one given our system here.
Hugs to all,
Terre
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I had a Pet scan only CT's & bone scans, so I'm not sure if I should be pushing for one or not, but I already feel like I have too many scans. I have blood work tomorrow & infusion on Friday.
The trip was great! Here's a pic of DH at Hester Creek winery in front of Terrafina which is supposed to be great (next time)
We ate at Mirodoro which is at Tin Horn Creek, where they have a grape tasting vineyard in the summer, great fun!! If you ever get a chance it is magical. The views, the food, the wine.... everything was lovely. We sat out on the deck overlooking the valley, grapevines for as far as you can see.
Hope everyone is well. Cheers, Dee
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Hi Dee. I am glad to see your pictures. They are gorgeous and helped distract me for a while. I haven't slept at all tonight. I've been having some hours of fear: fear of being unable to breathe. This is crap, man. I need to chill out!!!
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Dune I'd recommend going as short as you can before it starts falling out - mine started suddenly - washed my hair without noticing a strand falling out. 2 days later I was scooping a bin load of hair up off the shower floor. Shaved it off before I needed to wash it again :-)
I alternate between a wig & buffs as my little one doesn't like me without hair around her school friends, but I find the buffs much more comfortable.
It was horrible anticipating it, but for me, being bald really hasn't bothered me. My hair has started growing back since I switched to taxol - I look like a fuzzy duckling now :-)
thinking of you
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Dune, I did cut my hair real short before it all came out, then when I couldn't stand having little tufts of hair on my head I shaved the rest off, Anticipating the loss of hair was worse than losing it. My head gets cold easily. I do have a wig and plenty of pretty scarves, There is a discussion about wigs where I posted a list of places that offer free wigs. Loss of hair is just another lovely side effect.
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Dune, when I was on my original chemo 16 years ago, I lost my hair after 2 weeks from adriamyacin/5FU. A wonderful woman at the wig store shaved my head and then styled my wigs before turning me around to look in the mirror. The shock was much less that way. I know it is very hard on our older parents. My mother is 85 and she really can't deal with my illness. Speaking about it is almost non existent. Unfortunately the fear follows us all the time.
Dee, loved your pictures. British Columbia is beautiful. Still one of my favorite vacations.
Off to more blood work today. Feeling achy, hope that Ibrance is working or is it the femara making some bones hurt? I know I have extensive bone mets. I have had 3PET scans since dx last year.
Enjoy your day today all. Myra.
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I had one Pet scan when I went for a second opinion for which I'm very grateful because it showed the femur met which did not light up on the bone scan. Next to impossible to have another one - the waiting lists are just too long here in Quebec.Linda
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Been sick. Gosh this thread is busy, no way to catch up with you all.
Patty, I sure hope you start feeling better soon!
Dune... don't know you but am sending you all I have. With my recent Triple Crown of Pneumonia, Pulmonary Embolism and Radiation Pneumonitis I had a lot of breathing issues and now I have a cold on top of all that. Not being able to breathe is a very scary thing #
I have a PET scan scheduled for Thursday this week. this will be my third scan in 10 years and my second in six months so that they can find out if there is been progression. I am experiencing a small amount of scanxiety and I am sure it will get worse as the week goes on.
If it hadn't been for the second PET scan 6 months ago we would not know about the bone mets. The bone scan showed clear and so did the CT can. Only the PET scan showed the lesions. My oncologist says that the reason for that is that we caught them so early.
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Oh Dune, sorry you're so scared. ((hugs)) I lost all my hair, DH actually shaved it off for me, it was a most loving gesture. We both cried during it, but it was a very cathartic moment for us. I had a couple of wigs from the BC Cancer clinic & I wore little cotton hats at night because even in summer my head was cold.
Myra, we're both off to get blood work today, fingers crossed for both of us.
I've never had a pet scan I don't think. Many CT's & bone scans.
Jean, hope you're feeling better, I missed if it's the flu or just general not feeling well. I had a horrible flu earlier & it was miserable. Felt worse then than when I had chemo.
Off island again today for blood work, so have a good day everyone, Patty & Dune, hope you two are getting better. Cheers, Dee
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Hi all, as promised a few pics from Cuba
I thought I would spare you the bathing suit pics!
Linda
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fabulous Linda. Hopefully someday can get there now. Thanks for sharing. Myra.
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Love the winery pictures, Dee! Just beautiful! And Linda, you are an inspiration -- not letting needing a cane stop you from what must have been a truly amazing travel experience!
Dune... about the hair... when I had chemo (TC) in 2008, I didn't heed the advice to cut or buzz ahead of time. And I didn't realize how much was loose and ready to come out until I got in the shower and started washing it one day, and the wet lose strands got totally tangled up with the ones still attached to my head. What a mess! You definitely do not want to do that! But I also had a wonderful epiphany when I was wig shopping and actually found a much better, warmer hair color for my skin tone than my hair had been for several years. It truly was a silver lining, and I've kept that base color ever since. I also loved scarves from this website: http://www.anokhiusa.com/ ... a favorite of the girls in my August 08 chemo group. Oh, also... not sure if anyone mentioned this above, but the ACS does a monthly Look Good, Feel Better class for chemo patients, and our local one actually had a table of free wigs there, and helped us choose one. I've heard some have free wigs available at their offices or other ways of helping you get one -- it just depends on how they do it in your area, but maybe something to look into. That class also gives each participant a nice little collection of makeup (donated by cosmetic companies) and tips on scarf tying, etc. , so all-in-all maybe worth a couple of hours of your time to catch the next one closest to you. And lastly... if you have to buy one, some insurance companies (not mine, unfortunately) do pay for them with an RX written by your onc for a cranial prothesis.
Hugs to all. Hope the week brings only good news for those facing scans or still waiting for results. And special thoughts going out to you, Patty! Hope you're feeling better today. Deanna
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Linda, thanks for posting the pics, looks like a beautiful resort and nice you got to spend a couple of weeks with your sister! Your cane is nice and colorful.
Patty, how are you feeling?
JustJean, so sorry you've been feeling sick, I hope you're feeling better real soon. Sending healing hugs your way!
Dee, welcome back and awesome pics, looks like you and dh had a great time.
Dune, thinking of you and sending much love your way!
Hugs to all, Annie
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Deanna - we have the same insurance!! We also have SIGNA PPO.
Aurora - same for me with the tumor markers. They keep creeping up a little at a time! My MO says "how do you feel - what is your energy level?" I feel awesome! He said, then don't worry about it for now. I meet with him this Wed., along with my infusion.
Question - does anyone have fingernail issues? My nails seriously have not grown since starting treatment for Stage IV. . My hair, also. And, I lost a lot of hair due to SHINGLES!! Two weeks after my diagnosis of Stage IV, I got Shingles -- on left side of my face and head! It was unreal! Someday I'll show you a picture. It had gone into my left eye -- eye was completely swollen shut for two months. Doctors said it was one of the worst cases they've seen. Thanks. Couldn't go anywhere. I looked like someone had seriously beat me up and left me to die! At that time, I also was in severe bone pain/could barely walk with a walker. Sorry for the rambling. I will stop.
Seriously -- just wanted to know about fingernails!! My hormonal therapy is Exemestane (Aromasin) and Afinitor, and Herceptin every three weeks. My MO feels there's not a lot of side effects with Afinitor but I don't agree.
Sorry again for the rambling!!
Bev
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Bev, my fingernails have been horrible in recent weeks -- thin and peeling. It's got to be the Anastrazole.
And my UCLA onc said something similar to yours about TMs -- that they flucuate and in the absence of other symptoms, she wasn't concerned unless they doubled.
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Oh Linda those pics look great!! Probably a bit warmer than it was where I was on vacation! I hope you had a wonderful time.
Bev, my fingernails came completely off during chemo & have never been the same since. I have serious ridges in them. I'm only on anastrozole so I don't know if it's that or leftovers from chemo. I did start taking Biotin for hair & nails & I do think it helps a bit. My hair doesn't fall out nearly as much.
Annie, nice to see you, hope you're feeling well.
Hope everyone is well, good night! Cheers, Dee
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oh my Karz! It sounds like a horror movie. You just stepped up and dealt with it. I know, we all manage to do what must be done, but some kudos now and then are still nice.
NYC I NEVER thought the hair loss would bother me. It certainly didn't upset me when I was looking at the prospect in 2012. Since the stage iv dx I changed. Suddenly my old jewelry no longer satisfied me. I started preferring lacey camisols. I've always been such a tomboy. I hated long hair. I am thinking a really short cut would ease me into it in a number of ways. Do you mind telling me why you switched to taxol?
This is getting long, so will save and move on.
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OMG. Beautiful pics Linda. Beautiful car!
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Thanks to everyone for your suggestions about preparing for hair loss and being sure to take the ant-nausea meds, and the reassurance about the shortness of breath. Good luck with your scans and bloodwork. I have acupuncture early, so I'm going to try to get back to sleep.
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Dee ~ Just a thought on the biotin, which I also took with excellent results post-chemo to help my hair grow back. But since then, I read somewhere the suggestion that perhaps biotin in the high amounts in hair & nail supplements might also make cancer cells grow -- since they are basically the same type of fast growing cells, which is why those are both affected by chemo. I haven't looked for supporting research nor asked my onc about it, but it was something that so surprised me when I read it, and your comment about biotin made me remember it. Maybe someone else has heard this and looked into it. Otherwise, I'll make a note to research it and report back. (((Hugs))) Deanna
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