Bone Mets Thread
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Lulubee!!! You have such a great attitude. Thanks so much for sharing it with us. I don't know about anyone else, but my mind seems to be wandering into some pretty dark places these days. I really needed to read what you wrote.
Cristina, of course you may have a small prayer. Don't tell anyone, but I do it nearly daily. I do think a lot about you and I have to tell you, I hate how controlling my mom is, but I become ever more grateful that she is here for me. I am trying to hook her up with a support group for caregivers. I can sense she needs it, and she is open to the idea. It may take some pushing to actually get her to go though.
Oh God Linda. You need a hug really badly. Oh gosh I get so mad when these things happen, and I search but cannot find words of encouragement. This crap is really such a struggle at times, and I'm really sick of it. I hope others have some words of hope for us. For the most part, I can think that this will pass (not when it is actually happening though); but after multiple hits in succession, I just slip-slide into the "I'm dying" state of mind. GROWL!!!!!!! I still have a terrible cough with difficulty breathing so I couldn't actually scream that GROWL, but it felt good just pretending. Cool. Another tool in my bag of tricks.
Oh Patty. I'm so sorry you are still so sick. Way to much vomiting. (for me, once is too much) They can't discharge you until you can keep some food down. I think. Do they know what is causing this yet? I truly want to read about you playing with your "boys" who tower over you. You are such a sweetie.
txmom, for rbc counts to be more robust the nurses at my oncologist unitl recommended dark green leafies, like kale and spinach.
Myra you are so right about all of the ugliness going around. We must focus on our health and tend to every aspect of it. I sure wish I still had my motorcycle. Oh gosh. What am I thinking? It's raining and cold. I spend way too much time inside.
Dee, what a nice little gem you got from the book store. It was thoughtful of you to think of us and share.Hi everyone. I'm still trying to catch up.
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Hello to All,
Anyone lose their hair, get sick on a hormonal regiment? If so what type of hormonal drug. Just trying to get my bearings around the meds before I start treatment.
I wish a good, pain free day for all of you...
Karen
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Linda, very very scary what you went through! Thank God you came through everything! I truly hope things turn around for you, you deserve a break
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Good Morning
A lot has happened since I read yesterday.
Lynne, I'm glad you were able to speak with your surgeon. She sounds very compassionate. You and your dh are going through a lot and we are here for you whenever you need us.
Linda, How frightening for you. You've had enough now and a break for you is on the horizon.
Patty, Have they found a reason for your vomiting? Hope your wbc goes up so you can go home.
Moma, I've heard the phrase "stay the course" from my RO too and I think somehow that is reassuring.
Dee, Thanks for the quote.
Thinking of all you as we move forward to a new day and hopefully less pain, and more joy. Thanks for the cartoon Deanna.
Linda
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Hi all! Sorry for those who have had recent grief.
Saucy - hormonal treatments are the easy ones. Just think of it as menopause without a weaning off period. I'm on tamoxifen because I wasn't yet in menopause. Although some women do experience a bit of hair thinning, like some women do after menopause, I have just as much of an unruly mop as I did before. I tend to have strange reactions to meds when I first start taking them, so I did take a little dramamine with my first pill just to be sure, but I have no stomach issues at all. I got my period the day I started the tamoxifen, but I haven't had one since. I was peri-menopausal, though, so it might just be timing. The hot flashes can be inconvenient. I take my pill at 10:30 am and I think (or imagine?) that the night sweats are lessened on that schedule. I started xgeva soon after I started the tamoxifen, so it's hard to tell which side effects go with which drug. I had a period of foot cramps that seem to have improved. I get some facial ezcema, and I'm pretty certain that's from the xgeva. I think the tamoxifen has brought on a bit of arthritis at sites of previous injury, and I have gained about 20 pounds which I really didn't need. Now in the "too much information" category: my stool is a bit hard, and I get killer crotch itch for some bizarre reason. But the treatment is working! Whatever minor (and they are minor) side effects are worth it.
cjanet - by all means, get your husband a book, but please don't give it to him for his birthday! Get him something fun that shows you know him and appreciate him. It's worse than a husband giving his wife a toaster for her birthday. It's dehumanising! Okay, maybe it's just me, but I would feel that you didn't see him as a man, but as an extension of your disease.
LindaE54 - Yikes! How terrifying for you! I don't get contrast medium since I got a little nettle reaction and now I know why. I had one technician ask me if I wanted it anyway...um...no...
As for being able to diagnose bones, I asked my oncologist on Tuesday if there was any sign of my holes filling in. She said that they can't tell because even a simple bone break looks exactly the same in scans for a really long time after. In fact, I'd love to hear what test they used for those who have been told that the lesions are filling in. Was it an MRI or a PET, maybe?
She did send me for a neck xray, though, in response to my complaints of crunchiness. Just degenerative, so that's good. They did mention a lesion on my C5 which they had also seen on my MRI a year ago, which looks sclerotic. I didn't know about that one...on the original bone scan and CT scan, I was told it was degenerative. Sometimes I wonder if anyone actually knows what spread I actually had at diagnosis! But either way, still stable. She told me emphatically that my sore knee wouldn't be mets, and said there was no need for a post-radiation heart test because the beam didn't go anywhere near it. I asked about my blood levels at diagnosis, and they were great. Damn it! I can't even count on good blood work to reassure me. I get to reduce my xgeva to every three months! Woo-hoo! Getting the blood work was a major source of irritation.
Off to the Dicken's Christmas Festival in Rochester this weekend! Not Rochester, NY...Rochester, Kent. It's a really nice little cobblestoned town with a ruined castle and a cathedral. Gotta love the UK!
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Hi all,
I'm trying to catch up but my brain is on "off". Just wanted to check in and thank you all for your support, but can't concentrate right now. One my girlfriends took me to bone scan last night, bless her. Oh, I was so happy to crawl in my bed last night. Face is still swollen, look a bit like a little monster LOL but otherwise I'm ok. Will come back after more rest.
Welcome to newbies and oldies coming back. Lynne - So sorry about hubby, please keep us posted.
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LindaE my heart stopped beating a bit while I read your reaction to iodine - I am so happy you were in a place equipped to deal with such a life-threatening situation. Oh my gosh... I hope you are feeling better.
There's no way I can address each of you and your personal stories right now, I'm off for 8 of 10 rads in a minute but want to say I am with you in spirit and hope today is a great day without drama.
Amy
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So now there is some good news on the cancer front. This morning UBC Vancouver and the Canadian Cancer Society announced new medication in the fight again prostate cancer. Apparently this is huge isn treating this disease in advanced stages. Trials start today on humans . I know it's not breast cancer but it is a hormone blocker of sorts so who knows we may be next! I don't know all the detail I was at the gym when I saw it on the teeny tv's there. Break throughs are always good news.😊
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OK, just got a call from onc office. MD who was supposed to do bone bx threw his back out picking up car keys...lol .....see s**t happens to everyone!!!! Myra.
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Myra, I am laughing so hard. How mean of me to do that. I just keep thinking that if it happened to me, I would start to imagine that the sudden pain was somehow caused by new mets. That's just where my mind goes sometimes.
Picking up car keys? Seriously? Lol.
I hope your bone bx isn't delayed for long
Lynne
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Hi Ladies,
Hope all is going well with you all. My mom started bone infusion treatment (Zometra) this week and begins radiation to her hip on Monday. She will be out of work for a bit. I don't think she is ready to share full details of the diagnosis but she is staying positive. She told my brother yesterday and he is in shock, Not sure he understand what it all means. I'm going to call him tonight.
Wendy3 - great news on the prostate cancer. My dad is off the charts for having it and they have been doing biopsies for years and still cannot find it. Can't operate until then. He is a high bracket for it as all the men on his side have had it and passed away from it. Longevity is just not in our family.
Amy- hope the rad session isn't painful and those tumors shrink down asap!
Linda - wow! So glad you made it through and recovering. My thoughts go out for you.
Patty- from your picture you look so young! How old were you at your original Dx if you do not mind me asking? So sorry to hear you have been in and out of the hospital.
50sgrl - so sorry to hear that further surgery is on hold right now. Happy you were able to calm down and have a nice conversation with her. So nice to get support from all angles and that she gave you her attention. Most doctors are out the door on to the next case. I feel for you - my folks are in the same boat as my dad is putting off surgery as he will need to take care of my mom. I offered to stay with them a few days a week and work from their house as needed (luckily I can work from home) as I am an hour away and we shall see if it ends up coming down to it if and when both parents' health starts to go. This shouldn't happen - both are under 60! Praying for better outcomes for you and your family.
Cristina - I hope you begin to feel better soon. Treat yourself to something nice , you deserve it.
To all, I've tried to search through these forums and online but hoping for an idea what to expect as my mom starts radiation and zometra. How bad can side effects get? Is Zometra chemo? My mom is not ready to share this type of information and makes it sound like it is simple as ib profin.
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It's not chemo, it's a biphosphonate designed to interfere with the breaking down part of the bone renewal process. People get them at !ower doses for osteoporosis. They are usually well tolerated, and the only serious side effects are rare. Jaw necrosis is one of those and can be triggered by dental trauma like extractions. She should go to the dentist before she starts treatment to make sure everything is in good shape. Another rare side effect is spontaneous breaking of the femer. She'll have regular blood work done to keep an eye on her calcium levels and her kidney and liver function. If she has any choice in her treatment, she might want to ask about xgeva, which is similar but is a quick monthly injection. Radiation side effects vary by dose and location, and can involve nausea if the beam goes through the digestive system. That ends a day or two after the last treatment, and they should provide her with good strong anti nausea meds if necessary. Rads can make you fatigued for a while. Are they putting her on an AI inhibitor?
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Daughterlove, I am glad that your mom has started treatment. That step makes a big difference and can provide a feeling that things are falling into place. Zometa is a drug that helps strengthen bones. Many of us with bone mets are on this type of drug. I have monthly Zometa infusions and have not suffered many side effects. Some people do experience flu-like symptoms and/or joint/bone ache, especially with the first dose. Here is good advice I got from people on this thread. 1. It is important to be well-hydrated before and after the infusion. i drink lots of water the day before, the day of, and the day following treatment. 2. The infusion should be set to take at least 30 minutes. My cancer center automatically sets it for 45 minutes, and I have had no issues. Some on this thread had SEs when the infusion was only 15 minutes. If your mom's is set for 15, she can request a change to slower setting. 3. Take Tylenol the day of the treatment and for a day or two afterwards. I think that's about it. Thank you for the kind words about my DH. I am finding it much easier to be the person wit cancer than the spouse of someone who probably has it. I just want to get treatment started.
Patty - Are you home yet? Are you feeling any better? I hope you are.
Linda- I hope you are regaining your strength. We are still sending hugs your way.
Terre - Are you buried in boxes? It must feel wonderful to be in your own home. Are the cats settled in?
I am beginning to decorate my house for Christmas. My DH and I plan to take two of our grandchildren with us when we pick out our Christmas tree tomorrow. That will be fun. I set up my nativity set on my mantle today. It brought back so many memories. It is a Hummel set, and my family gave my grandmother a piece of it is a gift each Christmas until she had the complete set. It was handed down to my mother and then to me. I think of both those loving women every time I look at it.
Have a good night, everyone.
Lynne
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Saucychiq - My experience with Tamoxifen is very similar to Milaandra's. I'm on Tamoxifen and until a few weeks ago Lupron (it may have changed to Trelstar. I'm not sure if they changed the drug and they weren't sure at the oncologist's office. It scares me to think about that.) My hair has thinned quite a bit and there are hot flashes and night sweats.
I started Xgeva at the same time as the Tamoxifen and Lupron, so it's hard to tell which side effects go with which drug. Sometimes there are foot cramps,facial eczema, arthritic pain in my hands and feet, and fatigue. If I go for a walk the fatigue is under control however.
Sometimes my arm is sore where they've injected the drugs for a few days.
The worst experience so far is forgetfulness. Many women become more forgetful after menopause so perhaps it was inevitable. Maybe it was hardest for me because it was so sudden.
Karen
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Lynne, I am a Hummel collector myself, and I bet your nativity set is beautiful! I only have Mary and baby Jesus, I keep them out all year because they are beautiful
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Hi everyone,
Have not been able to check in as much lately, very slow doing everything due to pain from blood blisters (hand-foot syndrome), spine mets, and now shingles, but maybe I'll get relief from the spine pain with rads and cement procedure starting next week. Worst thing is my mom is in the hospital and lost blood and I can't get there - thank God for my sister and brother.
Does anyone have any advice to alleviate the excruciating spine pain from getting up from the radiation table? I feel like when they pull me up suddenly they are doing serious damage to my already fragile spine, and I am dreading the pain next week (sent me into a wheelchair for a while last time). My sister in law who is a nurse said some rooms have a harness that extends from the ceiling and will pick you up from the table - sounds great, but they must not have one in radiation since they didn't suggest it (they suggested I drug myself up on morphine prior instead, but I'd prefer not). At home I always have a wedge pillow behind me and sort of inch my way up very slowly in the morning, but I guess that would be hard on the narrow radiation table. I think someone on Sharktank should invent a self-inflatable slow lifting pillow!
LindaE, I am praying for some positive things to go your way, you are so due for a change in luck.
Patty, hope you are also finally turning the corner, you have also suffered too much, praying for you and your boys.
Wendy3, thank you for the info on prostrate cancer, will be interested for my Dad.
Lynne, great idea to get out the nativity scene, have been thinking of mine since my aunt and uncle gave it to me and it is very special. Was happy to be able to get out for a little walk and I loved seeing the little capes in my neighborhood getting all decked out for the season, plus the smell of the pines is so therapeutic. Hope my mom gets out of the hospital soon and that I can see her soon, but I can't give her shingles since she once suffered a horrible case of them. Hope you can all enjoy some peace, love, joy and pain free time this holiday season.
Hugs to all.
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3Holly - Oh not shingles on top of everything else? Are you getting the anti-viral tx called valacyclovir? They gave me this at the hospital but must be started within 72 hours of when the rash appears. I wish I had some advice to get up from that rad table - so much going on for you at the same time. Sending you my best wishes! and hugs.
Slept a good part of the afternoon, it seems as if my brain is starting to function again! I want to thank you all again for all your support, concern and kind words. I really don't know what I would do without you all, I've said it before but I say it again. I love you all.
Sending hugs all around.
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LindaE, yes that is the drug, and it seems to be working. Actually the big blood blisters from Hand-Foot syndrome have been far far more painful than the shingles, so maybe I caught the shingles early, hope that you did also. Glad you were able to get some rest, you certainly need as much as you can get to recover from all you've been through. Hoping you get as much TLC as possible.
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Myra we all could use a nice laugh, so it goes
Lynne good for you in sharing this time, take pictures, I am big w pict. first everyone gives me a hard time, but when they see it, oh they love it.
Wendy yeah any news of them moving forward with some new tx is great.thanks
3Holly do you think they would help if you would specifically ask them to help you just so, then maybe they would? Unfortunately a lot of ppl unless they went thru it cannot comprehend the agony a small move could cause.
LindaE hope you have a nice sleep. Hoping for the best.
Patty - you know I think men get tired of care much faster than a woman would. You must have spoiled him. Let it go (like in frozen...) otherwise it will eat at you. ( I am working on myself too)
Linda thanks for sharing, it does make me feel better. Annie thanks for the wishes. All of you. I just gotta believe and hope.
txmom- for Dani they worry more for the Platelets being low, if it gets under 20 they will panic, it didn't yet. if you have been on the same tx for awhile, why do you think the rbc are going down?
Dune the way you express yourself it seems to me you are already following what Lulubee posted, going with the flow...
Daughter i could feel your agony, and can so empathize. You could do some reading if it will help, it helps me, I have read so many books on the topics of doctors, how to talk to them, how to understand people in healthcare, even funny accounts of people going thru this monster hole, you could check Youtube, Dr Google, it might be more reassuring to you. Everyone goes thru life's ordeals in different ways, I like to know, some people choose not to. So see what works best for you. I think in time your mom will be able to speak more freely to you, but I so understand she not wanting you to feel bad it's a merry go round, then you feel worse because you are not sure how she is, that is what happens to my daughter and me, she needs me, but she hates that I have to listen to these things, she cannot stand in the same room when doc tells us stuff, even thou I am such a good actress she internalizes what I must be feeling. It is what it is. Not good.Hugs. You know your mom is a lucky gal to have you.
Sorry if I did not address everyone
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Holly,
My team is very gentle when moving me from the table to a seated position, for a number of reasons, one is sudden drop in blood pressure could cause fainting, number two is injury to a delicate spine. I guess I'd ask them to be more gentle and move you more slowly.
Amy
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I have this on my fridge, thought you guys would appreciate it.
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I am scheduled for a colonoscopy the end of this month but I'm of the mind, why bother? I've got Stage IV bone mets which have progressed rather significantly recently, I'm going through radiation to hopefully kill the cancer and now I have to subject myself to a colonoscopy to see if I have cancerous polyps? Why? Who cares? I certainly don't give a sh*t if I do. I'm so fed up with this cancer crap, feeling like crap, anxious and worried about what the future holds it's almost laughable - hey Amy you need a colonoscopy just for the hell of it. Let's see what other humiliations we can pile on...
Am I wrong? Would you?
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Totally agree, Amy - I would refuse the colonoscopy at least for now. Good luck with your rads, hope they give you relief.
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Hello everyone!
Daughter, I have a pamidronate infusion which a bit different from your mom, but similar. The first time I had it, I felt like I'd been run over by a truck. The bone pain was quite bad, but a tylenol & an ibuprofen work quite well. I quite often feel a bit flu-ish for 48 hours afterwards. I'm sorry that your mom still isn't being forthcoming, but maybe she is thinking that she is not worrying you if she shields you a bit.
Amy, I had a colonoscopy not long ago, apparently there is a connection between the 2 cancers. My friend just passed away from colon cancer & she suffered quite a bit. It's really not that bad, they give you sedation that is pretty good & the relief I felt from knowing that I had no polyps was good.
3Holly, I can't believe they aren't helping you get up off the table. Where I go, they are so helpful it's kind of embarrassing. Maybe ask them to help, they could just be clueless. And shingles??? Ok, I'm going to get my shingles vaccine next week.
Infusion tomorrow... sucks, but better than the alternative.
Take care everyone. cheers, Dee
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Milaandra, I've been watching "The Monarch of the Glen." Is it anything like that? Amazing scenery! I'm still coughing a lot, but we got the little guy today and took him to Kenelworth Mall to see the Christmas train/garden. I just wore a mask, and guess what?! I wasn't the only one. We had a nice time and my little guy got to spend a whole day with only the mask to show I'm sick. It was a really good time.]
Hopefully, this link, which opens in another window, will show you my 4 year old best friend.
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dune you had a motorcycle? pics please. That rocks.
Lindae- glad your friend took you to your scans. And glad you're feeling better today. Oh yeah we all love you too.
Daughter I was 31 at time of original diagnosis. I am 45 now but my body feels like it's 90. Lol
So I'm still the hospital. Low wbc. Definitely going home tomorrow, even if I have to escape. My eldest son spent the day with me. He really needed to see that I was doing okay. I had a really really good day. We shared the bed all day. And snuggled up. Was pretty funny this big giant boy and this little old me sharing the bed. And he felt much better when Dh came to pick him up this evening.
Thanks for all the support and love. Can't wait to pay it forward.
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hi dune,
Just getting caught up ans saw you had a motorcycle, us too!, Rode through out the U.S. And Canada, loved it! Hated getting rid of it, I actually cried when the couple ride away on it. Still have my riding gear, jacket, chaps, boots, gloves etc.. Love too know what you rode? Cheers, dee
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Holly, my rads were a few weeks after my stabilisation, so I was recovering from that. I got off by shifting slowly onto my side, then using my arm to push my torso up while swinging my legs down until I was sitting on the edge.
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Wendy3 - I noticed in your recent post you said you'd been at the gym. With bone mets, do you have to be extra careful in your workouts? I ask because i am thinking about signing up at a gym to use the elliptical machine, but am concerned that it might put too much movement/stress on my T11 vertebra where the tumor is. Also, do you lift any light weights to strengthen you muscles. I have fibromyalgia & osteoarthritis as well. Thanks.
Patty - I was 31 also with my initial BC dx, then 40 with Bone CA dx, and 54 with BC mets dx.
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Hi Dee. Mine was a Yamaha 550. I gave up one coat, the rain coat which totally saved my life in the 2005 "Ride Across Maryland." They have their own special ways of lr ud
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