Bone Mets Thread
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Lulubee - thank you. I cannot believe what you go through, but even more amazing is how you approach it.
Wendy - You look awesome. And you can complain, just know that you look great while complaining.
Love, peace, hugs to all.
PET scan tomorrow. If anything lights up, I'll blame it on the ice cream sandwich I just inhaled. So much for the low carb, high protein, pre-PET scan meal.
I did lie around all day and do nothing. That instruction I decided to follow to the letter... I should take this all more seriously.
>Z<
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Wendy, you look fabulous with short hair!
Have fun with cool earrings and lipstick shades.
Just because we now have short hair (or no hair) doesn't mean we can't play around with our other features.
You are a warrior!
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Wendy, you look great with short hair!!! The rest will regrow, in time. Such a hard thing, to lose our hair.
Z, will be praying and thinking of you tomorrow! Hoping you get a good scan (I won't breathe a word about the ice cream sandwich!).
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lulubee, you are both eloquent and inspiring -- not to mention quite amusing. I'm so happy you are past needing oxygen -- or at least the kind delivered from a tank. I'm truly a bit in awe at the turnaround -- especially hearing about the superbug episode in there. Yikes!
And Wendy, you were gorgeous with long hair, but I have to say your previously hidden bone structure and features are stunning in your new photo. Wow!
Lita, so happy to hear you're already getting some much needed pain relief, and praying things continue to improve!
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Wendy. Love the new fighting Wendy pic. Looking great !!
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Wendy, Keep visualizing yourself on the dragon boat where one day you will be again and see all of us in surrounding boats with you.
Patty, What is the latest with your move? How are you holding up?
Z, Good luck with scan today.
Louis, Does KD come home soon? This has been a rough ride for both of you. She is lucky to have you by her side.
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Wendy. You look great with short hair!
Lulubee. You are truly inspiring
Z hoping your scans never know about that ice cream sandwich!!!! May they be boring scans with no changes except regression
Lita so glad you're getting some relief
Patty so glad to see you. How are you feeling.
I had a horrible night. On the left side in my back hip I had excruciating pain last night. I was in tears. Plus I felt nauseous. It was so weird. I've never had any pain or SE from this dumb disease!!!! This morning I'm fine!!! Later today I have my first Gemzar infusion. I hope it's an easy one to tolerate!
Babs
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Wendy you are beautiful, your blue eyes pop,you are truly beautiful and I think you are rocking your new Wendy. Prayers are surrounding you. You're amazing. Hugs ~M~
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wendy, you look fabulous
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Wendy- beautiful! I agree with Deanna, it shows off your beautiful cheeks and eyes!
Z- I have PET today and MRI tomorrow. Hope we have just boring news next week.
I have been hit with extreme fatigue and weakness. A couple of weeks of almost all lying on the couch doing nothing. I think I could sleep all day. MO has run extra bt, which look ok. RO predicts I'll feel better by next Monday when I see him. He thinks it's the accumulation of lots of chemo and rads since January. The additional dx of brain lining issues caused us to put as much treatment into as little time as possible. Anyway, been exhausted and truly pretty depressed.
Lulubee, your words are what I needed to hear. I do truly wonder if there is a reason I'm still here. Not contributing much to the world at this point.
Next week will bebetter!!
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Kaption~ you're a beautiful strong woman and you contribute to each and everyone here that is walking the same road you are, but it just might be in different locations, every single day. You're part of this amazing sisterhood! Your body knows when rest is needed, so listen and be good to yourself! Drink a lot of fluid to rid your body of the toxins. I am sorry that we all are in this shit soup together. Hugs and prayers always! ~M~
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Thank you, micmel. It means a lot to hear that. Hugs! For all of us.
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Babs, hope that infusion goes well..will be thinking of you today also.
Kaption, wishing and praying for good scans for you today and tomorrow. Evidently your body needed rest, so that was probably good. Let us know how you are
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Good morning! We are still alive and hearing spring sounds like the spin cycle on the washer...ahhh
Sending hugs t🤗 you Wendy and Babs and scanxiety friends. Wendy...your new look is nice, but hair loss is a big deal! I know I am dreading the word chemo and I know it will happen. If it gets us back to NED then It's worth it. I see you in the dragon boat and Babs, I see your joy filled face at your daughters wedding. We all have people to live for.
BTW- Lita you make me laugh! Thank you!
Well, I got the job in Colorado and start Monday. Found a place to live on Craigslist yesterday and fly out on Sunday. DH is staying here for now but we will be doing some visits! It's for 3-6 months which Is doable if I remain stable. As I approach the next set of scans May 8 I don't expect good news, but that could be the normal scan panic.
Z, I will let you know about my experience at The University of Colorado cancer center!
The best thing about the job, in addition to making enough money to pay for my drugs, is that I am not thinking about cancer all the time. I realized how much of my day is spent thinking about it! Steals my health and my time
My girls think I am depressed but I think that me having cancer is just depressing for the whole family.
Take care everyone! ❤
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That's taken right now, hope it makes you smile and perhaps be wig confident 😃0 -
Wondering if anyone has had a biopsy to their skull? MRI shows lesion on my superior frontal bone. Have been having headaches and dizziness. This has been there for several months. Dr. says it is a difficult place to biopsy. It could be a vessel island or met according to my oncologist.
Thanks!
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Z good luck on your scan I'll be thinking of you all day❤️
Babs good luck I hope all goes well.
Iwrite you may go a very long time without doing chemo we just never know. There are lots of options and more coming everyday. I know what you mean about depression . I am trying to keep a happy face with my three kids at home now it's so hard on the family too and I'm constantly aware of that fact. In a good way it forces us to be more positive.
Jeanne I'm so sorry I think you must be a new addition and if so I'm sorry I didn't give the you virtual hug welcome. I lived in NS for five years I was in the navy back in the day (another life). Love love your city nicest people ever and back in the day a great party town. Was posted in Shelburne for two years as well so beautiful good memories😊
Lindalou you are all with me everyday for sure I may not name you all off each post but trust me I'm thinking of you all. Wouldn't it be something if we could all get together on a holiday island somewhere for two weeks and spoil ourselves and talk and heal . Ah well I need something to fill my dreams.
Thank you all for your kind words over the last few days I've really needed them. I will go outside today and hold my head up high. No more hiding😊
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Thanks Wendy. Althought I am not new to BC, I am new to bone mets. I am still trying to get used to the idea. You and all the other women on this tread as soooooo inspiring, and helping me soooo much! I would be lost otherwise. I may not post often, but I read all your posts. Now part of my daily routine,
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Z and Kaption,
Praying for really good news in your scans today and tomorrow.
Lulu, you made KD cry when she read your post from last night. Thank you again.
Sitting here in the hospital watching KD sleep peacefully. Much needed rest. The hypervolemia has made it difficult for her to breathe. They started her on oxygen late last night. She is so overloaded with fluids that we are waiting to see if they will do paracentesis to drain off a good bit of excess fluid.
She's caught in a Catch 22 right now. They won't discharge her until she is eating and drinking, but she is so full of extra fluid that she can't take anything else in. GRRRR
So the waiting continues........
Louis
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Babs - I am concerned about your pain, even though it was brief. Let us know how you are doing and if you have any further theories on the cause or how to deal with it. I am always very concerned about pain because it effects our ability to fight. And staying in the fight is what this is all about. Good luck with the infusion too.
I went to a different facility for my PET scan today and things went so much better. They don't prick me for glucose or require creatinin testing ... apparently the later is not even required for PET. I don't know why they have been doing it. The tech was 6 years out from a kidney cancer diagnosis and very positive. Also knowledgeable and somehow more senior and empowered. He's been doing scans for 17 years.
Dose of radioactive glucose is 1/5 what I was getting at the other facility ... machine at new facility is much more sensitive.
He definitely wanted low glucose ... talked a lot about being in a starvation state and how that helps the PET scan quality. Ice cream last nigh was not a good idea, but it was tasty. He believes that you just need to refrain from exercise in the few hours before the PET ... he wanted me perfectly still for the hour while I waited for the glucose to get into my body. He said that he doesn't see brown fat light up due to chills more than once or twice a year ... and you really have to be shivering on the table.
They put my report online so I don't have to shlep to the hospital to get it ...
Who knew one could shop for a better PET experience?!?
And the PET scan at this place (with very recent machinery) is less than $1500 if my co pay is to be believed. Certainly no financial reason for the insurance companies to deny PET scans if those are the economics. I am guessing newer machines are cheaper as well as better ... and so that brings down the price. Perhaps the lesson is to make sure the machine at your facility is recent.
Thanks for all the kind thoughts. Waiting begins ... but Kaption and I are going to have boring scans. I am very busy this weekend so no time to think about scans anyway. Off to Denver to chaperone the Los Alamos Middle School Choir trip.
Read everyone's posts ... thinking of you all ... keep your chins up and rock on ladies!
>Z<
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Louis~ sending prayer and strength that the rest she needs she's getting and that she will begin to get stronger each day. She is always in our prayers and thoughts. Bless you both. I know how hard it is on my DH, you're a wonderful man and she's blessed to have you. Remember to take care of yourself as well. Gentle hugs for KD I don't want to wake her ! Always holding all close in prayer ! ~M~
Z~ sending positive thoughts and energy to the chaperone! Hugs! ~M~
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Wendy, you look awesome. Pick that head up and strut around like a badass
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Had my PET with a brand new HD machine. Larger, longer tunnel (not the usual donut shape). And, I didn't have to sit in the dark for the hour wait. I could watch tv, could have brought my iPad if I'd known. Can get up and use the restroom while waiting. I guess the results are high definition and very detailed. It will be interesting to see what they see. I may not know anything until Monday since my MO has Fridays off. But, I'm more nervous about tomorrow's MRI anyway.
It was interesting!
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Hello all,
When I was first diagnosed, if someone disappeared from the boards I always thought it meant something bad had happened. I hoped that maybe it meant they were out living their life. So I'm just checking in. I'm still doing well on my first line treatment (Herceptin, perjeta, Xgeva). My cardiac function lowered a bit, but seems to have rebounded with some cardiac meds. I had some head symptoms, but I had a brain MRI and then orbital MRIs and they ruled out anything sinister.
I've been trying to "carpe diem" as much as possible. I realize that I am almost two years post diagnosis and am statistically tempting fate. But life is good! We were in the Grand Canyon earlier this month, something that at diagnosis I was convinced I would never see. And I just hosted an event for my daughter's first middle school play, which was so wonderful to be a part of. She's the green flower below. And I'm busy planning my son's 10th birthday with all his friends.
I'm attending the LBBC metastatic conference this weekend. I applied and was selected to their Hear My Voice program/advocacy training. I'm excited to see so many of the women I know from Facebook groups in person. I was just asked to serve on a panel for the Patient Advocate Foundation in May.
I try to read weekly and I think of you all often. Sending much love.
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Shoot!!! Just typed a lengthy post and tablet went nuts and I lost the whole damn thing, so I may do this post in stages and to hell with any typos. Yesterday was rough. Finished last session of rads and then went to Costco to buy a few things. By the time I got home i was totally wiped out from cumulative fatigue and spent the rest of the day in the La-Z-Boy watching trash TV and dozing. Couldn't even make dinner, so all I had was a small banana, yogurt and a few almonds. Dh bought a few cartons of Mexican food this afternoon (carnitas, langua, chile verde, etc.) so I won't have to cook for a few days.😃
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Post no. 2 b4 the tablet goes nuts...
I was going to start my Xeloda agsin this evening but decided to wait until tomorrow to give my body one more day to rest up after all the rads and the Zometa infusion I had a few days ago. This is the longest i've gone without it - 2.5 weeks, and I can actually FEEL my fingertips again, easily make a fist and put my tiny earrings on without difficulty. Better enjoy it while it lasts because once I'm back on X, it'll be HFS all over again.
My lower back itches and burns from the rads, but I'm using aloe vera to deal with the sting. RO said not to use the heat on the La-Z-Boy but massage unit set at gentle is OK as long as it doesn't irritate my back. Have a thing to go to up in SF this weekend, and I'm bringing my wheelchair. RO said it will probably take a few more weeks to reap the full benefits from Rads. He also said don't wait so long next time I have pain. I know I should have had the rads a month ago.
Babs, I agree with Z. Get that hip pain looked at...at least mention it to dr. Any pain that brings tears to the eyes is not good. I have hip Mets, and RO says we'll probably have to blast those too if they start acting up.
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Post no. 3 (I told you my initial lost post was a long one 😅)
Greetings to the new people. This is a fabulous, supportive thread.
My upper thigh is still numb, but RO is pretty confident that should improve as the radiated lesions heal. The arc of the rads should also have reached some adjacent muscle mets next to the lower spine, too, but I won't know until some weeks pass. There will be pain as things stabilize back there. I'm saying this for the newbies to let them know that rads don't necessarily work over night. You will get some relief but it takes time...usually weeks. At least I don't have to deal with the swallowing and esophagus issues I had the last time I had rads to the upper spine. That was no fun.
Kaption, no, fatigue is not fun. I'm still fatigued...but i'm just accepting it for what it is. Our bodies are at WAR with this disease, and unfortunately there is no furlough for us MBC warriors right now. Even my EYES get major fatigue so I can't read or watch TV as long as I'd like to. So I just have to close my eyes, meditate and pray until the blurriness goes away.
Dh got a coupon from Costco, and bought me a nice stool for the kitchen so it ended up being for free. Now I can sit down while I chop up vegetables. I'll try and include a picture soon.
Wendy, how are you holding up? I used to love my shoulder length hair, too, but now I console myself with how much time I save by not having to take care of it and how much $ I'm saving by not having to buy hair care products.
My eyes are going, so time to sign off.
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Blue~ lovely family. So good to see such smiles and happiness and may you keep doing well on your treatment. Very gorgeous scenery. Thank you so much for sharing. Keeping all in prayer. ~M~
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Lita, Bluefrog - thanks for the thorough update.
Kaption - have a great weekend, its the best revenge. Wish I had access to an HD PET here in the boondocks ...
>Z<
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Blue lovely to see your lovely face and to hear all is well warms my old soul. I know what you mean I worry about Terra and Christine but people have lives and if they feel great get out there and live them totally get that. You have a beautiful family
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