Bone Mets Thread
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Bosco
I am also taking Gemzar and my platelets keep going down also. This week they were only 67 and I am supposed to get my tx on Thursday. This medicine that you said they give you to raise the platelets. How do you take it??
Thanks
Rosieo
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LindaE, are you still fatigued from Xgeva? I wasn't at first but now I'm really tired and still acid reflux. Sunny here today which always helps.
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Lindalou - No, I'm fine. It lasted about 48 hours. That really sucks. Prisolec (sp? stomach coating) doesn't seem to help you?
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Rosieo
- It's the drug I mentioned a few weeks ago. They are Revolade (Eltrombopag) tablets -one a day in the morning. Can't take dairy within 4 hrs either side. My haematologist said it takes 4 weeks to kick in which is about the time I have been taking it. I will know more about whether it's working end of next week.
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Happy Anniversary Deanna! I'm also married 35 years! My poor husband is a saint!
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LindaLou,
I don't know if you drink tea, but my acid reflex was really bad since my first radiation 8 years ago, and is so much better since I cut out tea recently. Once in a very great while I allow myself one cup, but other than that I have kicked the habit (was hard to do since I'm Irish and it's kind of a social thing as well). I can still drink coffee (but I have toast first to line the stomach), but the tea was what was really aggravating the reflex. I used to take Prilosec for it, but recent reports on damage to stomach and heart attack questions made me go back to the Zantac since it has been around longer and is well tested(150 mg Zantac, but you can take it twice a day if needed). Can also take tums, but not near time of other meds since it blocks absorption. I take Zantac at night since that is when the reflux is worst. The reflex gets worse on certain meds - was bad when I was on Ibrance/letrozole (it was then that I tried cutting out tea, so glad since it has really worked for me). If not tea, there might be something in your diet that can be changed, and I would definitely try the Zantac and tums if needed. Hope you feel better soon!
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Happy Anniversary Deanna! DH & I will be 35 years in January, I honestly don't know where the time went! And like Lynnwood, he is a saint to put up with me.
If there is anyone here from Vancouver Island, there is an RN who works in palliative care and she is doing her doctoral on living with MBC.(ironically she is MBC & had 2 near relatives die of MBC) Anyway she is looking for those of us who would volunteer 1-3 hours of time for an interview. Please pm me for her email addy as I don't want to post it here. She will meet up with you at your choice of venue, no need to travel.
Happy Sunday everyone. Cheers, Dee
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Deanna, Happy 35th Anniversary! Hope you are doing something special.
Dee, glad you're feeling a bit better. I've been having bad reactions to the pamidronate as well, after being on it for a year. Glad you enjoyed the concert despite how you were feeling.
Chelle, I loved your post about the wine and mac and cheese!
Lindalou, sorry to hear you're feeling fatigued.
Terre, when do you expect your results?
Hydranne, as Lindalou said we love hearing your good news, and I think your well wishes are healing for sure.
Hugs to all of you, Annie
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Loves how gr8 to hear from you! Speedy recovery to you.
Dee - wow, that was a bad one. So glad you coming around. I had 2 wks of headaches and migraines, I would say for lack of sleep, so I did not even call the doc, what am I a gonna tell him, I am up at night?? And did not tell the kids, bcs than they would freak out, Meds are my best friend, a pill here another there and so we move on.
Terre- look at this cheerleading team you got here, we are practically carrying you over to the new place!
Chelle- love the humor, and yes! for strong women, as they saying goes: ain't got time for the bad stuff. Hope to hear good news!
Deanna - nice!! Oh the memories, Sept. was 35 for me,also!!!! I really don't know where time has gone. This year has been extremely difficult,i told the kids we were celebrating privately, did not wanna put Dani through it, it's more me, I just could not face her.
Tomorrow is a biggie, scans and then conference with doc!
Warm hugs, check on you guys tomorrow.
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3Holly, Thanks for the tips. Prilosec hasn't done much so I will switch to Zantac and the pharmacist today said to also try Gavison.
Hope everyone has a good week with less pain and good scan reports. Dee, I saw a plaque today that said "Cheers" and I thought of you.
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Good luck momallthe time with Dani's scans. I will keep her in my thoughts.
I too have been having horrible heart burn. The GERD has been nauseating. I don't think I have time for more meds. Myra.
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update: I think I have turned the corner a tad bit. My calcium was really low, could that be from the xgeva shot I got on Wed? Also my potassium was a bit off and they claim they found an uti that grew bacteria. I hate hospitals for this reason. Also never into life did my blood sugar read 180 after eating. The good news I can walk on my leg! Hard to lift it up to the bed but other than that all had improved.0
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We just bought our son's bus ticket to come home for Thanksgiving. He's away at Trinity College in Hartford, CT. I think he will want to lay around and rest. He will be eating up all the food since he's used to the buffet at his school. lol We miss him so much because now we are empty nesters. It will be so good to see him again.
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Wow, that's great news, Loves! And chances are the slightly high blood sugar is just an anomaly, and maybe has something to do with a mix of meds and hospital food. But great to hear you sounding upbeat already!
3Holly, thanks for your thoughts about tea and GERD. I've had some never before digestive stuff going on since starting Ibrance, and your comments make me think I will keep a log and see if I can pin it on anything in particular. I use a natural heartburn relief product by Melaleuca that works pretty well, but some nights I have to chomp down several of them to relieve the burning.
Mom, I am praying that Dani's scans show improvement!!! You and she will be in my thoughts tomorrow!
rushjackson, so glad your son will be home for Thanksgiving! Is he a freshman this year?
Thank you for all the anniversary wishes! I was doing some last minute packing for a trip today and shocked to find out that the pants I haven't worn all summer no longer fit right, thanks to Ibrance. Oh, well. Since it's keeping me going, I guess I can't complain. But it was a bit of a shock to realize that the bloated tummy and "matronly middle" feeling I never had before Ibrance is definitely real. Anyway, I'll try to keep up with this thread to know how everyone is doing, but I won't be on-line as much as usual this week.
Hugs and a great week to all! Deanna
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Hi dlb823,
Yep my son is a freshman. He's really excited to be at his college.
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Myra and everyone with heartburn - sending deepest empathy and sympathy. I take two prescription antacids and that seems to usually keep it under control. Didn't realise how much until I left them at home last week during my business trip. Was getting heartburn and reflux from toast. Ugh. Hope all of you find something that brings relief. It's another thing we really should get a pass from, I reckon.
Loves - great news on the leg! The physical therapy will teach you how to lift it.
Rush - great news that your son is headed home!
Momallthetime - The cheerleading section here is overwhelming and humbling to say the least. All the good wishes are overwhelming. And no one has yet called me a nut case for being 60, having Stage IV BC and buying a house.
Sending good thoughts, prayers, energy, etc, for Dani to have great results tomorrow. Crossing fingers, toes, eyes, legs, arms for her and for you. Hydranne - I think I already said congrats on your good news, but even if I did, it deserves more than one!
Annie - I should have results tomorrow or Wed. Hoping it's just me being neurotic and overdoing things but something feels different in my back and I have a new rib pain. So we shall see. Will post when I get the results. Hoping for tomorrow....
Dee, Lindalou & Annie - hope you're both feeling better.
Deanna - have a good trip.
I'm going to have to stalk Dune on the boards and see if I can find her...
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Deanna how exciting have a great trip enjoy yourself and congrat on 35 years. I've got twenty under my belt and happy for each year.
Terre I'm hoping it all turns out well you are in my thoughts. We make ourselves crazy with these scans eh? The worst is the waiting I find.
Rushjackson how wonderful to have your son at home. My daughter is in her third year and I look forward to every moment she can spare for her old mother.
Dee I'm sorry you are having issues with your drugs. I hope you get it resolved soon and are back at what gives you joy.
Chelle you are a sweat heart through and through. Funny how the weather turns and I'm all up for noodles and stews and all things warm and fattening. Lol
I'm terrible at getting to all of you but believe me when I say each and every one of you are an inspiration and are in my heart daily.
Wendy
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Good morning to all, it's Monday again, wow the weekends just fly by!
Loves, it is so nice to hear that you can walk on your leg! Sorry about the other incidental findings but I'm sure they'll have it all under control soon. Great progress so far, makes me happy for you.
Deanna, have a great trip. About the weight gain I totally understand how you feel, I couldn't get into any of my capris I just bought the summer before because of my matronly middle. I actually cried for a few minutes and then went out and bought new stuff.
Rushjackson, I'm so happy your son will be home for Thanksgiving. Enjoy your visit with him.
Momallthetime, thinking of you and Dani this morning, praying that her scans show improvement.
Terre, I hope you don't have to wait too long for results but I'm sending out positive thoughts for continued NED. I always find I have new pains just before a scan, crazy!
Chelle, lol to all things warm and fattening, yep tis the season. Well it's comfort food and we need all the comfort we can get.
Myra, is it almost time for you to go see your granddaughter? I think it's soon, can't wait to see more pics.
Hugs to all, Annie
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did anyone ever have low calcium? My calcium was normal until I had the xgeva shot last Wednesday.
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Hi, has been a long time since I posted in the bone mets thread - probably several years in fact. I just took a break from the board, one that I felt I needed at the time. .
I had the IM rod placed, hip to knee, I have been on Xeloda for 31 months. Started out at 4500 mgs and was down to 2000mgs. My scans showed stable but I had a pathological fracture of my scapula and T10 and my energy level has just fallen to zero. I break out in a sweat if I try to do anything. Oncologist ordered a PET and I honestly felt it would be ok as all my other scans didn't show any new tumors. The PET showed the bone mets were worse than the one in Feb. 2014 so tomorrow I start Havalen.
Has anyone been on Havalen? In reading it sounds as if it is a shot given over 2-5 minutes but oncologist made it sound that it was an IV chemo.
I would appreciate any input on Havalen and I sure hope you have sunshine where you are. We have had over a week of rain, damp, humid, dreary days. Now we are having a cold front come through so not quite as warm. but started raining last night and hasn't stopped all day. Am so ready to see a little sun - just gives a lift to ones spirit, at least mine. Many thanks ladies
PS Have any of you taken an antibiotic called Doxycyclin with your chemo? My daughter found an article talking about using it. Never heard of it - will try asking my oncologist about it and see if he has seen the reports and what he thinks.
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Loves, I have never had low calcium but it is my understanding that Xgeva draws a lot of calcium out of your body. My onc told me to double up aon the calcium with vitamin d on the day of my Xgeva shot. I usually take it twice a day but take it 4 times a day on shot day
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Guys I am quite drained. Unfortunately the scans were miserable. We even got the report already. Actually Dani went home, she was too tired and did not have the energy to hear what doc had to say. I went to Onco's office, he did not know how to tell me. He started just by saying it's worse. The whole skeleton if there was any more room for some horrible monster malignancy it found a spot. It's now in even more places and a small nodule that grew on soft tissue and another on the mediastinum. He does wanna start on Palbociclib, and some others. Deanna, I was just reading your issues with Palbo, I am so scared she will have to deal with that also. Bowel issues, agh!!! weight gain, she is like 90lbs, she was never more than like 100 she doesnt even know what is like to have extra weight! And how soon can we see some responses, Onco didnt say a/t to me, but he WAS worried!
Sorry, I know so many were rooting for us, I felt bad in even letting you know, but maybe someone could think of something. The blood biopsy showed that there are different possibilities to treat this thing, but nothing changed in the makeup of the type. She doesnt even know it all, i came back late in the evening and I could not bring myself to tell her late at night, gonna wait for tomorrow...I just told her he said it's not stable. She is already sad just by these words, we put so much hope into this tx. Maybe at night is better, so she cud cry w hubby?? I don't know what to do??
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Mom, I am crushed at this news. But am never going to give up hope for Dani, not unless I have to. All of our prayers are with you and your family tonight. Love Chelle
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Momallthetime I'm so sorry your heart must be very heavy right now. The shock of it all is always so awful . It's good that there are options for treatment that is very hopeful. As most of the woman on this thread already know I'm an advocate for medical marajuana I know it sounds hollow but if it works? I've known people who were very ill and they bounced back. I hope this doesn't offend you I mean this kindly. But when I hear of such pain I want them to be better it's that simple. Your both in my thoughts.
Wendy
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Mom, I'm sorry. Such a tough day. For me, I'd rather know at night so I could cry my eyes out with my husband and pull myself together for the kids the next day. You know your daughter best. I am really, really sorry. Hoping the next treatment will be more effective. I'll be praying for her and for you. Hugs tonight. Love, Dana
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I'm on the I phone and so hard to address all in the hospital but i am reading and praying. Mom, I'm lost for words but my prayers are first for Dari. LynnW thanks for info on calcium. I may be going home tomorrow.
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Oh no @ Dani. I am so so so so so very sorry, Momallthetime. How heart wrenching. I so wish I could give you a huge hug and make it all better. I am just crushed on your behalf. And please don't apologise for posting - we are all rooting for you and Dani and we all want to know what's going on. Sending HUGE hugs and prayers to you and Dani. I am glad there are options for her. I know they're scary, but having options is what matters.
Loves - glad you may get to go home! And it is amazing when you can stand on the sore leg so quick after surgery, isn't it? I went from "no weight bearing" due to fracture to "full weight bearing" immediately after surgery. Very glad for you.
Lots of hugs and love to all,
Terre
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Mom, so sorry about those results. I assume you are very close to my age, with a very sick daughter. I don't know how you hold it together. I worry about mine when they have a cold, once a mother always a mother. I think Dani already knows the results are not positive, just by the fact you are not dancing, smiling and opening champagne. Her imagination might be going to the very dark side, so perhaps giving her the straight story with the "more tx " angle would be helpful. Good luck and I will think of you and Dani and hers and your DHs.
Annie, yes we are up to Mallory this weekend. We can't wait, 3 months old already! She has changed so much, she is already smiling and giggling now.
Have a wonderful night all. Myra.
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Momall, my heart ached reading your post. Tough day! Is it so far cancer is active mainly just in the bones(besides the small nodule in the soft tissue)? Have you discussed the option of internal radiation with the doctors? Internal rad can target all the lesions at once. Dani needs something that works quickly to reduce the tumor burden and thus stabilize the condition. So sorry for your worries. Please try to rest tonight. Tomorrow the fight continues!
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Loves can't believe you worrying about someone else, when u r just comg out of this surgery, very special.
Hydranne - tomorrow will be a phone conf w doc, he is waiting for TM's results tomorrow then will call and get the whole picture. But TM's have been going up, so I am sure tom will be worse. Her TM's always were paralel to whatever was going on. I am planning to cal Rad doc early in the AM, hear it from him, he was very nice since we met just a few weeks ago, and will mention what Xavo said about the internal radiation. I think it's a gr8 idea. Definitely too much of a tumor burden. You can't imagine what the report looks like. I will let you know what he says bt that Xavo.
Myra sweetie, yep, we could always tell even when they just look at you if something is not going the right way w the "children", we also happen to be a very close bunch, and she is not sharg w anyone besides her sisters, so it's...i will mention it the way you said it, but she is cynical by now, and even when I told her he got the biopsy back and he is excited she told me - yeah I heard that expression many times b4.
Chelle Wendy Terre I really feel your support and I know you feel, that's why I was hesitant to write, Dana i kinda let time pass while I was overthinking it, and now it's late, then I told her kinda something that the larger lesion in the skull did not get worse, and she already picked up something, she is like, that is not good enough...and tomorrow after I spk to the Radiologist and again to Onco I will have to tell her. I don't know what to think.
He wants to use Palbo then immunotherapy injected straight into the THING in the mediastinum. I will try to see if the NP has a simpler way to explain to me. they don't have a nurse navigator. I called our Primary he will be speakg to Onco tom also. He is very straight, he asked me if I want he will spk to Dani, I am not sure which way is better. Sorry to make it difficult, it's just that much I know, she really thought she could push it, she was willing to get this stuff for 6 hrs for 2 days every wk, or every other wk,plus transportation time IF she could see results, i know she will be devastated. AND she doesn't wanna make ME feel bad, so it's a crazy situation.She so wishes I as a mom, would not have to deal w something like that. And then i kinda told my hubby, I did not let him read the report, and he looks like he was hit by a train, his little girl. Wait, I didn't even tell sis yet, I told them, I gotta get facts together first.
Wow, that's a bad post. You guys are the heroines, and so so special. How you are there for each other, I am just crying now just thinkg about it. You know what, tomorrow will come and maybe they will come up w something brilliant. I will be in touch when I know more. Everyone take care
(so sorry if I forgot to mention someone)
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