Bone Mets Thread
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Oh, also I forgot to mention that I'm attending a Gilda's Club Support Group on Tuesday mornings. I think it's going well. They have people there that have all types of cancer. I really admire some of the people that attend.
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Rushjackson, YAY for the good onc appointment. I am glad that your tx seems to be working. It will make your holidays that much more enjoyable. You and your son will have a great time at Star Wars. I am sure that a movie theater is the best place to see it with all the special effects and booms and crashes and other sounds.. I want to see it too, all in good time. Enjoy your son's winter break.
Sue, I am sorry to hear about your cough and pain. I do hope that you are better by New Year's Eve. You and your husband will undoubtedly enjoy being in NYC to welcome in 2016.
Julieho, My bone mets were diagnosed with a bone scan. I have not had a PET scan. I have to admit that after having mammogram, ultrasound, chest x-ray, CT scan, MRI, and bone scan last June, I would not have wanted to have any additional scans.
I hope everyone is enjoying the weekend. DH and I rode around town looking at Christmas lights this evening. I never lose interest in seeing them year after year. It is amazing to think how much effort some people put into the displays.
Lynne
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Hello Ladies! I'm sure you all have discussed the effects of zometa in this thread many times. It's just so time consuming to search for it. Please forgive me for my laziness. My doc and I discussed starting zometa when I get my next herceptin infusion. Can any of you share with me any side effects you have experienced with this med? I appreciate any info you are willing to share
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rushjackson,
Wonderful news! Did I mention I was born and raised in the Bronx (hence my screen name)? Hope you enjoyed the movie
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Beanrn
It is a good question. I had pretty uncomfortable side effects in my firat three infusions. I was exhausted with chills and increased hot flashes. But since then some minor leg pain but no other se. Good luck
mary
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Myra, I was thinking about you all week, imaginingall too well what you were going through. I'm glad you got the best news possible under the circumstances. Bon voyage and enjoy the well deserved R and R!
Stefanie
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Myra, I know you're off on your cruise -- and what a super hubby to do that for you! But I just wanted to add my sigh of relief and tell you I'm so happy that all the testing you had cleared you of anything beyond the skull mets, which it sounds like you already have a plan to take care of quickly!
And such a happy update from you, Rushjackson! So glad things are looking up and you're doing well! Enjoy having your son home for his break.
Sue, enjoy NYC on Christmas Eve. That sounds magical!
Terre, I can't believe how busy you are! And, geez -- a client emergency this week? You have far more patience than I would to add him into your schedule right before Christmas!
julieho, great (preliminary) news on your scan results! Wohoo to no mets!
And Lindalou, I'm very, very happy to read about the "0" PSA score! YaY!!! And to having your son home for Christmas!
So lots of good news for a change! Now we need to hear that Dune is okay. Dune???? Where are you????
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Dune hasn't checked in BCO since 11 Dec. I just texted a message on her cell phone and hope to hear back soon. Will let you know.
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Just checking in, and catching up, but this thread moves so fast! Just have to say @TxMom the cankles comment made me chuckle! I also was on Taxotere (last tx 10/22) and MO checked ankles at each appt, but I never knew it was the Taxotere that may cause swelling; didn't ask. Never had any, but I do take a diuretic for HPB, so maybe that helped? ha.
Re: PET, my MO ordered a PET as routine after my dx, which found the bone mets. I guess she knew my insurance would pay because I've never had a bone scan and I'll have a PET every 3 months going forward for at least a year.
@BeanRN, I'm also on Herceptin and Zometa. I would say the only SE I've experienced is some achiness especially in my legs which I attribute to the Zometa since I didn't have it with TCHP tx. I read on this thread (I think) to make sure the infusion is at least 30 min. My onco nurse said it would be 15 min, but I asked for 30 and she obliged. Also, I've read hydration is key. It seems to be key with everything, chemo, rads and zometa! For me, just Tylenol or Motrin helped the aches.
So glad to read the good news for many of you after recent scans. And, to those who will be traveling or on break, enjoy the well-deserved R&R! Hugs and best wishes to all of you experiencing troubles and pain that it will all quickly resolve and you'll be able to find peace and joy this holiday season, and here's to a better new year!
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Linda thx for checking, it has been really rough on her. How u r holding up waiting for results?
Deanna so sad about Carla, but so thoughtful of you to share. No words.
Terre oh how smart those little ones could be. All my neighbors are feeding a family of cats around here, and that family already had puppies, so we have cats galore here. They don't even move from the front steps if that is where they decide to rest, sometimes they have really spooked me. Almost all are black with green eyes! I think Papa has white paws, and one is grey.
Myra! How wonderful. unbelievable what you had to go thru. Dani has lots of skull mets, she had Gamma to some, and the others are being watched.
Lynne, you seem to have top of the line care, so that means so much. You guys are proactive, best of luck, we will be cheering for you.
DaughterL good for you. Nice that you had this experience with counseling.
Lindalou great news for you.
RuthJ so glad for you.
I know I did not address everyone, sorry - GN
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Hi Everyone,
BeanRN, zometa is different for everyone. Since I get it with Taxotere, H&P, I really can't tell which side effects are from which meds. I do take my nausea meds starting the day of infusion for 4 days. Some women experience flu like symptoms, bone pain, achy. To help with symptoms, some women ask for a slower drip time and take Claritin.
Deanna, my swelling has pretty much gone away. I had it for about 4 days. I decreased salt, increased protein,water and potassium, slept with my feet elevated. I did talk to my OC. She said some is normal but if it interferes with walking or hurts or one leg is more swollen than the other to call her back. Coconut water has a lot of potassium in it....
So happy to read about everybody's good scans. Makes me so, so happy, really...just wonderful. Hope everyone has a really great day today. LindaE54 let us know if you hear from Dune. XO
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Hi,
Julie, I get bone scans and CT scans. I have lots of sclerotic bone mets & also some lytic mets that are not PET avid for some strange reason (they are more like prostate mets than BC mets) so they don't show up very well on a PET scan. According to my ONC they use CT and bone scan in the beginning because the combo of both shows both lytic and sclerotic bone mets. Then when they know the type of bone met they continue to follow with the most appropriate type of diagnostic scan for your particular lesions. One of my mets sisters at the cancer center gets CT scans and sometimes they add a PET scan. Everyone has their own type of metastatic disease.
Myra, so glad there are no brain mets. good luck with the rads after your cruise. Have a wonderful time on the lovely warm ocean. (My head MRI also showed no brain mets just big old skull lesions that have calmed down and swelling of meninges is down with steroids, no rads just yet. But, rads to head are now in my plan book for the future.)
I have been busy back and forth to Cancer Center(1.5 hr drive from home both ways) for more diagnostics and transfusions due to new bone marrow involvement. So, I haven't had time to post much, but have been reading during my 4 hr transfusions in between falling asleep from the benadryl pre med. So, I'm trying to get caught up on some holiday prep.
Wishing all Lightness, hugs, no pain, and wishes for good scans, no scanxiety, and lots of holiday cheer to all.
Beth
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Hello all. I was out of town and offline for a few days and had lots of catching up to do here.
Deanna and Dee, Thank you for checking on and posting about our sister Carla. I am so devastated to hear that her bright and beautiful smile is gone from this world. I can only hope she was surrounded by love and comfort in her last days. Now she can indeed fly, free of pain and troubles. I am just so sad to hear this.
Chelle, Bluefrog, Tracy, and Rachel1, a long and crazy happy dance is in order for your good scan news! Rachel1, cry all you need to, but when you are done remember there is still lots of hope too. And you aren't a weenie! When I called myself a woosie my onc nurse told me this is tough and there are no woosies here! So no weenies either, ha ha!
Lynne, Holding you and DH close in thought today. Hoping that tricky surgery goes flawlessly and your DH is home and healing soon.
Myra, Only here would we think "only" a skull met was good news, but so glad to hear it! Enjoy your cruise to the max!
Valerie, Good luck with mammogram and ultra sound Tuesday! Hope they find that lump is nothing to worry about.
Mommall, you asked a question several pages back as to whether PET can find anomaly in breast tissue and the answer is yes. I have had several PETs where activity in both the lumpectomy and other breast were noted on the report. It is apparently not able to distinguish activity due healing (after surgery & biopsy in my case) from active cancer, but I believe only biopsy can do that.
Hindsfeet, So sorry to hear of your numerous skull mets. I don't know anything about gamma knife but hope you have gotten answers from others on bco. Hope this tx stomps those mets out and brings you relief. Sending big hugs as you go through this difficult time.
Terre, Sounds like your new home is Eden incarnate! No rush to unpack, this is your home and you can take all the time you need. Sure wish you could get a nice break from work though.
Lindalou, Yea! for being done with rads and your DH score of 0! Hope you enjoyed our couple days of sunshine.
PattyP, Thank you for checking in once in a while, even with a quick post. Hope you feel better this week and can have a wonderful Christmas with your DH and sons.
Wishing everyone not addressed by name a fine and painfree week. Hugs to all!
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Hi ladies,
Myra, enjoy your cruise! What wonderful news to be "only" a skull met, and good luck with radiation.
Where is Dune?
I am struggling with anxiety/depression and trying not to let it get the best of me. I was referred to a psychiatrist several weeks ago who never returned my call. So I really have no help there. I've put in numerous calls to pain management. I am terrifued of running out of medications and going into withdrawal. I left 2 messages today. They probably think I'm drug seeking, which I am. I just want to make sure I am not left with no meds, that's going to be ugly.
My coworker got me a cute gift basket for Christmas. Trying to enjoy the kindness people are showing me.
Hugs, peace and love to everyone.
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Hi all,
Lynn - thinking of you today and praying dh's surgery goes well.
I haven't heard back from Dune. I hope she's just taking a break but I find it odd that she didn't reply to my text message.
Cristina - can your nurse arrange for pain med scripts?
Got my results at my Onc's appt today. All bone mets are stable with the exception of 2 on pelvis which show some regression. Axillary lymph node (which was the size of a small egg at dx) reduced by 20% over the course of 2 years and is stable. No more iodine for me, Onc will continue CT scans without contrast and bone scans every 3 months and will add an abdominal ultrasound every 6 months.
Sending hugs all around.
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Linda, That is such great news and so happy you received such a good report. You deserved a break and now you can head into the holidays with a smile. YAY!!!!
Rushjackson and Caryn, The Bronx.....what can I say..... The GW bridge has memories for me. I love going over it, because it means I'm going to see my son. I have a photo of it surrounded by fog that I love. Rush, I saw Star Wars last week. You will enjoy it.
Lynne, Long long day for you. Let us know how you and your dh are doing. Hoping his surgery went well.
Beth, Are you feeling better after the infusions? 1.5 hours is a long way but it sure sounds like you are getting quality care.
Jo, No more sunshine for us!!
Thinking of all of you......hope this week brings better days and more good news.
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Linda, such great news! You deserve some, you've had a tough go of it lately. Wish you had heard from Dune, I've also send her a PM, but like you, not heard anything. I may send her a text as well.
Lindalou, good news for you & DH too!!
Lynne, good luck today with your DH's surgery, do let us know how things go.
Cristina, I hope someone gets back to you, not having meds isn't good for you physically or mentally.
Beth, I too have to travel for treatment, it's a pain, sometimes we just stay over, it's easier than trying to drive back especially if the weather isn't great.
Terre, your new place sounds great, I'm so jealous that you're heading into summer & we're heading into winter! DH & I will celebrate the solstice tonight.
Hello to everyone else on this thread! Must get back to baking. Cheers, Dee
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Thank you all so much for the prayers and good wishes for my DH. The surgery lasted about 9 hours. He needed many units of blood. The removal of the tumor thrombus was much easier than they expected, but the complexity of the veins in the horseshoe kidney and the growth pattern of the tumor in the kidney were worse than anticipated. As one of the surgeons said, he earned his money today. All in all things went well. They had to remove the right kidney and part of the left one as well as the isthmus that connected them.They think they got all the cancer, and it looks like he will have adequate kidney function. DH is in ICU and still heavily sedated. They hope to remove the breathing tube and move him to a regular room tomorrow or the next day. I was glad to have three of my sons with me today. My sister-in-law who works at the hospital also stayed with us for a while.
Sorry that it is all about me today, but I am exhausted. Thank you all for your support.
Lynne
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Lynne,
Such a relief to have this surgery behind you. Continued prayers and good wishes for a speedy recovery for your DH.
Amy
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Lindae. - great news ! Have you gotten your new dog spoiled rotten yet ?
Too tired to respond to all but know i keep younin my thoughts and prayers
Iam back in the hospital. Was admitted early sat am. Same ole thing. Uncontrollable vomiting, diahrea, dehydration and uti. I am having a really hard time mentally. Plesse Keep my boys my husband and myself in your prayers for a quick recovery to be home for Christmas .
Dune. Hope u r OK.
Hugs all around
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oh PAtty. So sorry to hear you are back in the hospital. I hope you get some relief andcan get home to be with your family for Christmas.
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Awww, Patty, I'm so sorry. Something needs to be done to get you out of this exhausting cycle! I know your boys (including hubby) must be terrified that this keeps happening. And you've got to be beyond exhausted. You're always in my prayers -- even more so tonight.
Lynne, I'm so glad everything went so well for your hubby's very long surgery. Hopefully, you can get some rest tonight. I'll be praying for him tonight and looking for an update tomorrow.
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So glad your DH's surgery is over and was successful.
Sending good thoughts for recovery.Patty - so sorry you're back in the hospital. That just sucks! Praying you're home for Christmas.
Great news, Linda!! Whoo Hoo!
Beth - hope the infusion helped and you're feeling better!
Momall - So sweet of you to think of me with all you have on your plate. Hope Dani's little one is feeling better.
Sue - NYC for New Year's! Wowsa! How fun!
Rushjackson - sounds like you'll have a great Christmas with your son home. Glad your checkup was good.
Cristina - Sorry you're having such a hard time. Have you asked the Cancer Society if they have someone you can talk to? We had someone for my mom and she was really helpful.
Lynnwood, tx mom, Bosco, BeanRN, Caryn, Jobur, Mary, Stefajoy, Julieho, BJSMiller, Lindalou, Amy, Dee, Deanna, Dune (where are you?), and all who I haven't listed - wishing you a great week and that regardless of your religious beliefs that you enjoy the spirit of the holiday season!
Terre
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Patty, I am keeping you and your family in my prayers. I hope you recover quickly and are home for Christmas
Lynne
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Patty, prayers for a quick hospital stay and that you will be home with your family for Christmas!
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Patty, You and your family are in my thoughts and prayers. We are all here for you and are hoping you get home soon. Sending you a little peace in the photo below. I know you like pictures.
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Hello to all,
I've been a little absent getting wrapped up in the holiday season and nursing a terrible ear infection but have been reading and thinking of each and everyone of you.
Lynne, I'm relieved to hear your husband's surgery is over and was successful. Praying for a speedy recovery and sending you both healing hugs.
Linda, woohoo to your great scan results! I am beyond happy for you and after all you've been through I'm sure you must be relieved.
Patty, I am so sorry you have to go through this vicious cycle and I know you must be frustrated and exhausted from it all. There has got to be something they're missing as to why this keeps coming back. Sending you lots of love and healing energy and prayers that you will be home for Christmas.
Myra, I hope you're enjoying the cruise and I'm relieved to hear that there is a plan to treat the skull met. I know there is great success with that. Wishing you all the best!
Rachel, Chelle, Bluefrog76 and all who have received good news, it makes my heart happy.
Dune, really feeling your absence, praying you're just taking a break and out having some fun.
I can't remember much beyond what I've posted but will go back and catch up more later. Hugs to all, Annie
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I'm back after doing a little more reading. Terre your new home sounds ideal and I can just picture it. I'm so happy for you and dh to finally have a place you can call your own. I also see you have been one busy girl, wow! I hope you get to enjoy some down time over the holidays.
Kendrasue, thinking of you today as you have your mammogram and ultrasound and sending positive thoughts that it will turn out to be nothing. (((Hugs)))
Hindsfeet, praying for good results with the gamma knife and success in getting rid of the skull mets and brain lesions. I met a woman at the cancer centre who went through something similar and her latest scan shows her brain is clear and no sign of mets!
Hugs, Annie
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annie - hope you feel better soon. Do you commonly get ear aches ? My mil would say put Vicks vapo rub on your feet and cover with socks. Not sure it works but worth s try. Course she also used to make my dh as a child eat a gob of it when he was congested. The label clearly says do not injest.
Lynne - hoping your dh is getter better and resting comfortably as possible.
Lindalou - love the peaceful pic. Thanks. Put a huge smile on my face
Deanna - hugs. You certainly keep this thread alive and interesting. THanks for sharing your wisdom, experience and compassion with all of us
Lindae - how's the new dog ???
Hugs to all I missed
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Good morning all,
Lynn - how sweet of you to keep us updated! So happy to hear surgery went well, 9 hours wow. I hope you managed to get some sleep and glad you were well surrounded. Keeping you and hd in my prayers.
Patty - darn, I'm so sorry you're back in the hospital. I just wish they could stop that vicious circle. Your strength is an inspiration for me. Your boys, hd and you are in my thoughts and prayers. Praline is absolutely priceless. And yes too spoiled! But oh how lucky I am to have found such a good dog, she's perfect!
Mommal - Stable TMs! I know you don't want to get your hopes too high but that is certainly good news!
Annie - so happy to hear from you! Ouch on that ear infection! You certainly don't need that on top of your miserable acupuncture adventure.
I'm worried about Dune. Dee, have you heard back from her? Do you all think we should call her home phone number and perhaps be able to speak to her Mom?
Thank you all for your kind words. It's the best X-Mas gift ever! Never thought I would have those results on my 3rd X-Mas since dx.
My sister is coming over for X-Mas with her camera. I will post pix of my fur babies. I should really invest in a camera, I love to see pix. It will be quiet for me as Xgeva is on the agenda tomorrow. Lindalou - that pic also put a smile on my face.
Wishing you all a good X-Mas filled with joy and peace wherever you are, hopefully not in hospital.
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