Bone Mets Thread
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Bluefrog, welcome! So sorry that you have to be here, but this place has been a godsend to me! Very sorry that you had to endure such pain, I can't even imagine how much it hurt! I hope your pain has improved. You will find a lot of useful information and support here as you go through your treatment.
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Rachel, Welcome to the bone mets thread. It sounds like you have found a good MO that you like. It is so important to have an MO you are comfortable with and you can trust. Things can be crazy and scary at first, but as you have probably read on previous posts, it does get better. People here know what you are going through and are very supportive every step of the way.
Lynne
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Rachel, welcome, although I'm so sorry to learn about what you've been through that got you here. But I'm glad you've found us.
I thought I was reading everyone's posts, even though I haven't felt much like posting myself. But at the moment, I'm lost re. what's been going on with everyone, except I remember Dune had a clear brain MRI -- thank God! And Leva, it sounds like you've had an amazing response to your RT! That's wonderful news! And Lynne, it sounds like your tx is working, so hooray for that! And Terre, I am also sending positive prayers & vibes that the new house purchase goes smoothly, if it's meant to be! The last thing any of us needs is stress, but it sounds like you have a back up plan in place, if you need it. And I loved the photo of your wooly visitor!
I have just come through one of the worst relapses I could ever imagine. I don't want to dwell on it, but if I could share one thing, it would be, if your TMs are clearly rising (as mine were since May), don't delay in getting your meds switched (as I did), hoping the TMs were an anomaly (in denial) just because you don't have increased pain. My pain came on like a freight train and literally had me unable to function even with pain meds for a couple of weeks. Thank God, my new meds seem to be kicking in big time in the last two days, but since they, too, came with SEs (mostly gastro issues from the Ibrance and hip pain from the Faslodex), it hasn't been a pretty picture. As I told Annie when she PM'd to check on me, I have a new appreciation for what some of you have been going through -- the pain and the dark places it takes you to. But I guess the remainder of the message is, there is hope -- if you and your onc can find the right med(s).
Hoping to get caught up on anything and anyone I missed. In the mean time, much love and caring going out to all! Deanna
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Deanna, I'm sorry life has been so tough and painful for you lately. Prayers for a reversal of misfortunes for you but thankful your new meds seems to be working. Please remember every one of us here, is here for you.
Amy
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Deanna, I am sorry to hear that you have experienced so much pain lately. I am glad that you have begun new meds that have helped. I hope the SEs can be managed or are temporary. It is so easy to try to ignore things like changes in TMs hoping that they really are of no significance. I think we all do that to some extent, but we usually suffer for it. I hope you feel better soon. I wIll keep you in mythoughts.
Lynne
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Yes, I would say that means the radiation worked. I had T-8 done like six years ago. I remember the radiologist saying the cancer would never return to T-8. PET scans sometimes mention a thickening there but no more cancer. Happy for you.
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Deana, so sorry that you have been having a rough time, and hoping that things will be turning around for the better for you.
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Deana I am sorry that it has been so difficult for you. The good news is you are getting the pain under control. Are they sure that its the Ibrance that is giving you stomach issues or is it the pain meds? Also, did they follow the proper protocol when giving you your injections, ie warming it up etc? I know they did not when I started and I suffered terrible backaches and hip pain for months. It all went away when I insisted they do it properly! Hope you start feeling better soon!
SusanAnn
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Susan, you're right. I think it's been a double-whammy. I've always had a sensitive intestinal tract, and suffered with IBS for many years until I figured out (and eventually confirmed with an IgG Antibody Food Intolerance Test) that wheat was causing my flares. Ibuprofen and Acetaminophen are also both very hard on me, even causing some gastro bleeding. But the Ibrance has brought some new and distinct upper GI stuff, like heartburn/indigestion and nausea. Plus then you add stuff to combat the constipation, and oh my goodness....
And you're so right about the Faslodex injections. Although I did everything mentioned on the Faslodex thread, the gal who did my first injections did not employ the best technique. I did okay, but didn't realize until the second set how much better it was when a different technique was used. If I don't get lab tech #2 next time, I'm going to ask if she's available. My hips weren't nearly as sore, but I still had lots of deep aching, which I think is the drug at work/lack of estrogen.
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Oh Deanna, I am so sorry you're going through this. Here's to the new treatment kicking your cancer to the kerb and to the pain getting under control. Sending big (but gentle) hugs.
Terre
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Deanna just wanted to mention I also had severe heartburn/indigestion and nausea from the day I started. My oncologist started me on omeprazole Dr 20mg daily. Thankfully it helped with all three issues, although I did have breakthrough nausea occasionally. Just know that eventually it may cause low magnesium levels which in turn cause severe cramping. I am still taking omeprazole Dr daily as it never went away.
SusanAnn
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Thanks, Susan. I've jotted that drug down and will ask about it if my SEs continue or worsen. I'm glad it worked for you. For now a Melaleuca product called Calmicid has worked well enough for the indigestion and heart burn. And I didn't know that about magnesium, but I have not only been craving bananas, I recently dug out a body oil by Body Bliss that I hadn't used in ages that has magnesium in it! Isn't it interesting how our bodies know?!
Thank you all for the good wishes. During the few days I wasn't on here, I had shared how bad I was feeling with a couple of close (non-bc) friends, and got lectures on the downward spiral pharmaceuticals put you in -- as if it was my choice to do these drugs and feel this bad -- as well as total disbelief that I could feel so bad when I was feeling so good a few weeks ago. Clearly, no one gets it like we do.
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Deanna, sorry you've been having a rough time of it. I hope your new regime kicks your mets to the curb. I've had gastro intestinal issues for the past couple of years & I know that it's tough on your whole system. No one gets it until it happens to them. Someone once told me that everyone has "minor" surgery until they have surgery then it's anything but minor!
We're heading out for a couple of days to Alert Bay, Port McNeill, Port Hardy & Sointula (google them if you've never heard of them) I'm really hoping that we see some bears, tho maybe not too up close & personal! Very little connectivity up there so I'll check back in in a few days. Take care everyone, painfree thoughts for all. Cheers, Dee
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gg27 enjoy your travels. It sounds beautiful.
Deanna sending positive energy your way.Your words are so helpful, as I find myself taking.more pain pills but not wanting to. talk to MO much, because I would like to avoid scans for a while.
Bluefrog welcome and sorry you had to find us. I hope you and your doctors are working on a good plan for your pain. life does get easier when paon is managed.
Hello to all wishing everyone a good week.
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Thanks to everyone for their congratulations on the good news I got from my MRI. I guess the problems I'm having with my thinking and memory could be chemo-brain. That's what my nurse navigator -- or someone, lol -- mentioned. Still, I'm going to look into that luminosity product. I was having problems with my memory before the cancer. That can come from long-term benzo use, and I certainly have used it for a long time. Perhaps I can counteract some of that by exercising my brain using luminosity. I have heard good things about it.
Congratulations to you, Jobur. I'll take that one week too. And project it out to further weeks. I'm hearing good things about Ibrance too. I go to Hopkins tomorrow for that 2nd opinion so many ladies encouraged me to do. They keep mentioning studies. I wonder if I will be a candidate for Ibrance. I was sure we were on the right track last cycle, but this cycle it appears those lymph nodes are at war again. They are purple-y tonight and possibly a little bit raised. Well, I see my doctor the day after the PET and those are the end of the first week of September. I'm only slightly worried. I will mention this to the Hopkins doc and I will mention any trials he mentions to my onc next week or the week after. I'm still in charge of arranging our 40th reunion, so I'm needed around a bit more. Rock on to all of us!!!!
Lynne -- WOOHOO for sure!!!!!
Leva, I'm no expert, but that sounds really good. You needed that, and I am so glad it worked. You get a ROCK ON and a WOOHOO!
Kiwi, billygoat chin hairs and eye pearls from a cat hair. You live an interesting life. Will you raise animals at your new house? Or garden? or both? I wonder what you will produce. LOL What is this chin hair stuff anyway? Is it part of the whole glorious chemo adventure? Well, I'm keeping fingers and toes crossed and wish you the best with your real estate adventure. It can feel overwhelming, but trust your realtor. It is way too much to read then and there, so they explain what it is you are signing and where you are to initial. I know. It takes a lot of faith, and with all the paperwork that will pass between you all, you will likely have times where you are not thinking the most trusting of thoughts. It's done in legalese so that it would take us too long to read it and understand it. Enjoy the process, and hold those keys proudly when it is done.
Myra, I hope you feel better tomorrow too. I really think we need to be cautious about how much we do. I'm trying to increase gym time to 2 days a week. Pretty pathetic, but better than one. However, I frequently notice ladies who are much more active than me suddenly being in the hospital for something or other. I tend toward exhaustion which makes my brain act weird, but this has been the 2nd time I've had it tested after it acted strangely. Remember? The vacation? And then this incident? It's exhaustion. I don't think we realize how much chemo takes out of us. That's today's theory.
Bluefrog that sounds so painful. Do you have a treatment plan yet. Any radiation included? It sure seems to have helped a lot of people with vertebral mets.
Deanna, I'm so sorry you've been in such pain. I hope the side effects from the Ibrance and Faslodex let up quickly, if that is possible. And you are right. Clearly no one gets it like we do, and personally, I learn more and more all the time, from my own experiences and from experiences of all these fantastic ladies here. Feel better soon.
Dee, if you are going around bears, make sure you have bear-smell-block containers. They really come after food these days.0 -
Deanna,
So glad to see you posted, but sorry you are having so many problems. Starting Faslodex and Ibrance at the same time has to be kind of a double whammy to the system. Hope some of the se's subside as your body becomes more accustomed to the drugs. I'm sure your non bc friends are well meaning, but it is difficult for them to understand without having walked in our shoes. I prefer to keep my rx drug regimen as minimal as possible, but if you find drugs that help you to keep living your life, it makes sense to me to use them. I like to add things one at a time when possible to make it easier to keep track of what drug is causing what se.
How often are you getting blood work done? Will you be able to complete your1st cycle of Ibrance at 125mg?
It sounds like you have been kicking yourself for being slow to change tx, but I thought you were very proactive, going for the change even before getting your scan results. I had quite a bit more pain too just after starting Faslodex. I was convinced it wasn't working for the first couple months, but the pain decreased as the months went by and my July scan showed regression. Hope it will be the same for you.
There is a discussion on page 7 of the Ibrance thread regarding using antacids and the like while taking Ibrance. When I questioned my specialty pharmacist about this, she was unaware of any interactions/problems, but suggested taking any needed antacid type medication several hours before or after the Ibrance. I would be interested to hear your mo or pharmacist's opinion on this.
Feel better soon!
Jo
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Dune, looks like we were posting at the same time! Aren't we the chatty ones tonight? And hey, it looks to me like your brain is working just fine! I wish your #$%@ lymph nodes would behave themselves! Sound like you are in for a busy and hopefully informative week in Sept. Went to my 40th reunion this summer. Saw all my old slumber party girlfriends from junior high and it was a blast! When is yours coming up?
Bluefrog, Welcome, but sorry you have found yourself here. What a blessing that you found a great ortho doc who properly diagnosed and treated you. Sounds like you are in good hands now. It's still a lot to deal with though, especially with 2 kids to care for. Hope you are feeling better and your tx is good to you.
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Hi Everyone, Getting caught up with all of your news........Just got back from my trip to Chicago. As long as I took OXY every 6 hours I was ok. Interesting that nobody knew my husband or I have cancer so it was very freeing feeling for both of us. Nice to get caught up in the energy of the city and not dwell on cancer for a few days. I'll post pictures later. We had a drink at the Trump tower over looking the city at night and got a little emotional in the moment of it.....ah.... the little things right?
Dune, so happy for you and your good brain MRI !!!
Bluefrog, Welcome, the women here are so supportive and understanding.
Deanna, I will go get some Calmicid today. Hoping that you are on the other side of your pain flare. It is so hard I know. and thanks to Susan for omeprazole suggestion.
Jo, I'll check out page 7 for antacids
Dee, have a great trip and post pictures when you get back.
I'll go and read some back pages, but for now I wish you all a good day.
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Good morning All
I read a bit here every day and so appreciate everyone's presence, though like all of us, it's not a road we would have chosen.
Deanna, I too send gentle hugs and hope your pain has eased up.
Jobhur I really appreciate what you wrote about wanting to start things for rx one at a time. I am just at the beginning and my plan is tamoxifen which I will start this week ( procrastinated a little on getting the script filled) and Herceptin which I will start in 2 weeks so I have a little time between the two.
Lindalou- you look fantastic! and I totally get how it must feel freeing not having everyone 'know' what's going on. I have been VERY selective with whom I share this news. luckily it's summer and flowy tops and dresses give me some room to 'breathe' with my 'uni boob' situation lol
Welcome Bluefrog, sorry for the pain, I have vertebral mets too... hip bothers me more though...
annie and xavo thanks for the well wishes.
I really wish we had a like button or the abilty to comment post by post as I have a hard time keeping each story straight, but I am thinking of all of us!
Hugs
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Gaia, I was initially on tamoxifen and zometa when diagnosed and after a few weeks my hip felt so much better. All the aching went away.
Lindalou, I love Chicago. The outdoor bar by the bean has the best Bloody Mary's ever. Glad you got a break from cancerland.
Dune, my brain does weird things when I'm tired and my MO reassures me it's not cancer at every visit.
Deanna, hope you get relief for your pain. Chia seeds are a good source of potassium.
Have a great day everyone. XO
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Good morning ladies, I am back to the living. Hubby and I have sworn off 1500mile car trips!! It was for a wonderful reason, but for now on, JetBlue here we come! All that sitting caused a flare of numbness and muscle spasms in my right leg. Must do hamstring stretches and release that.
Deanna, sorry you are having so many pain and stomach issues. Job ur was correct there was a lot of discussion on the Ibrance board about antacid use. I haven't been having that issue, so i didn't pay much attention. A lot of us were lowered to 100 mg the first month because of low counts. Studies have shown there is no outcome difference between 100 & 125 mgs. I am having real problems with anemia, all my other blood work is good, except my TMs won't cooperate even though my scans show some improvement. Ibrance for those of us not newbies to tx has NOT been a walk in the park. We have lost several women on to other tx that started with us in March. Make sure you take the Ibrance after a large meal within 30 mins.
Dune wonderful news on the MRI. Good luck on your second opinion. I am going to a good MO in the Maryland area now.
Dee have a wonderful few days away.
Lindalou, beautiful picture. We all have so much left to enjoy in life. Let's just all promise to embrace what we can.
Xavo, glad you finally got good info and positive words from a caring and knowledgeable MO.
Rachel, dr silver should be in research NOT patient care. His words were ugly and unnecessary. When I was dx'd a year and half ago, my MO, RN, RO, Ortho all said the same thing: this has been a chronic disease just like any other. You can live 10 or more years.
Annie, so many wonderful celebrations, please cherish every one. Something I have tried so hard to learn. Being a Type A, it was difficult.
Well, this has become very wordy. Sorry if I missed anyone, will be back keeping up better, but for now will end with my new love.........
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Myra, such a beautiful love!! Who could look at that beautiful baby and not have a smile on their face?
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Jobur thank you for reminding me about Ibrance and antacids. In my case the heartburn was so bad they decided it was necessary. I just took the Ibrance in the AM and the antacid in the PM. But I do agree that its a good idea to check with your MO before you start!
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Lindalou, Lovely photos! You and your handsome DH look fantastic! So glad you had a nice trip and a bit of a vacation from cancerland. Good for you too, keeping a schedule on your pain meds instead of waiting for it to get away from you and then trying to play catch up.
Myra, glad you are home and have rejoined the living, ha ha! I'll bet you are missing that beautiful grandbaby already though! Something tells me Jet Blue is going to be getting a lot of new business...
Regarding Ibrance and antacids. I mentioned this more as a question than a warning. Keeping in mind there are a number of different drugs that might qualify as antacids (Tums/calcium carbonate, Zantec/ranitidine, Prilosec/omeprazole) has anyone's mo or pharmacists specifically told them NOT to take any of these at the same time as Ibrance? I use Tums for a calcium supplement and take one at lunch and one at dinner when I also take my Ibrance. This was ok'd by the specialty pharmacist I spoke with, but she did not seem very knowledgeable on this subject so I wonder how others are being advised.
SusanAnn, what kind of antacid do you take? OTC or rx?
The sun and summer has finally returned here after a bunch of grey and chilly days so am looking forward to spending the rest of the day gardening. Hope everyone else is having a good day!
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Hello to all,
Wow it has been busy here, I hope my tired brain doesn't leave anyone out. I actually have to go back a couple of pages.
Deanna, I sure hope today is a much better day for you pain wise, I know about the dark places our minds go to when it happens. Glad that your pain meds are helping you, it's always hard finding the right combination that will work for us.
Dune, prayers that your nodes are not acting up again. I guess we all have some kind of brain fog from our treatments because I am so forgetful lately too and used to have a sharp memory.
Dee, have an awesome time away, please take pictures and share them with us. I hope you're pain free and able to enjoy every moment!
Bluefrog, so sorry I haven't welcomed you yet, I don't know how I missed your post. So sorry for all you are going through and I'm sending you healing hugs and positive energy. This is an incredible group of women who will support and guide you.
Lindalou, omg you and dh are stunning! What a beautiful picture, thank you for sharing. I am so happy you were able to enjoy your time away.
Myra, I hear you about long car rides, I just cannot do it. I end up like the tin man, I can barely move I get so stiff. Your granddaughter is precious, I'm so happy for you.
Ok that's as far as my foggy brain takes me, not sure whom I missed but it was not intentional, I'll be back!
Hugs, Annie
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Bluefrog, welcome! Your onc sounds great!
Deanna, glad that the situation now is under control. Thanks for the good advice about TM changing. Hopefully the new treatment brings you NED!
LindarL, beautiful photos and beautiful people in it. Thanks for sharing. It brings joy!
Thinking of all who are here with my best wishes. (Here we are having a brilliantl late summer day, post-rain fresh, sunny, cool, and quiet. Ah, summer is leaving.)
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Jobur I was in the phase 3 study of Ibrance/Faslodex when I was prescribed Omeprazole DR 20 mg. I do remember asking my oncologist about it. The contract I had signed said no antacids. He said that he was aware but felt that due to my bad reaction it was needed.
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Haven't posted in awhile I do read this everyday and appreciate that you guys keep it so busy. Here are some random thoughts. Welcome to the newbies sorry you're here but you will appreciate all the great info. Love the photos of what is going on in your lives. Myra I am waiting for my daughter to evict her daughter, should be pretty soon her due date is Oct 7 can hardly wait. Watching and listening to DD makes me dizzy. She is trying to do a lot of stuff before the baby comes. Moving from a one bedroom to a two bedroom apt this coming week. I'm trying to help and not interfere too much Really wish I could baby sit but my energy level is way too low to deal with an infant. DH and I celebrated our anniversary by going into the city for a day we took the ferry into town for a change rather than the bus.. Then had dinner with the kids to celebrate our anniversary and their first anniversary. When we were heading back to Jersey we saw one of the cruise ships leaving the dock here is a pic of the cruise ship as our ferry passed by
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