Bone Mets Thread
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Hi JVF -
My bone mets responded to Xeloda for about 9-12 months. The Xeloda followed radiation treatment to areas of bone progression. Is your cancer ER+? I found that being on some type of an aromatase inhibitor and Zometa helped my bone mets as well. If your shin mets are painful or creating functional challenges, you may benefit from a Rad Onc consult.
I have a lot of bone mets. Radiation therapy has been a stop gap when systemic treatment alone could not keep the disease and pain in check.
Wishing you relief.
-JeeNee
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Hi LA894
Sorry to hear you are having back troubles and that you have been getting a hassle from your insurance re: surgery. I hope you can appeal.
I had back surgery in August, followed by radiation in September. It has taken a really long time to bounce back. Perhaps it will just take a while longer. I am going to go to physical therapy - perhaps that will help.
Let me know how things go with the Ibrance. It was an option presented to me. I am entering a clinical trial instead, but you never know...
If you ever just need to vent about unpredictable achy bones, you have a sympathetic ear here. Sometimes its really tough to tell if something new or persistent is up, or if its just more of the same old, same old. Go with your gut and ask questions.
Hang in there.
-Heather
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Tarheel/Michelle - I have just started using the bone broth and I absolutely love the recipe in the cookbook that I posted a picture of. It's actually quite tasty all by itself as a warm drink. I try to drink a cup mid-morning. Then at lunch I've been making soup by throwing a lot of vegetables that I don't normally eat (ground up cauliflower, squash, brussel sprouts, etc) plus turmeric and black pepper into the broth. This is a relatively new regimen, but it has really helped me get more veggies in my diet and also turmeric which is such a great spice for health. The recipe in the cookbook has so many vegetables that are simmered with the bones that the resulting broth really tastes like vegetable soup all on its own. I have been intending to also add a cup in the evening as I believe they say one cup 4x per day is the goal. I haven't gotten there yet.
Babs - I had a hard time with radiation - T5-T11. I was very fatigued despite the fact that my RO said it was a very tolerable treatment. My back has continued to hurt pre- and post- radiation so I'm having an MRI on Sunday to see if anything new is going on. My RO said that it can take weeks for the pain to subside sometimes. Still waiting....
Heather - Thanks. It's always good to know that others experience the same thing. I am on my 2nd cycle of iBrance and will report back as I get further into treatment. I am also having other issues - facial numbness due to a tumor pressing on my trigeminal nerve. So I am also on gabapentin. I feel like I'm on so many different things it's hard to tell what medicine is causing what SE. But just in case I sound like I'm whining -- I am actually quite happy about my treatment. None of these minor complaints is intolerable and I am very thankful treatment has come so far in the 10 years since my original diagnosis.
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Thank you all for the information and helpful hints. You rock!!!!! This isn't easy at all. I have no appetite but am eating cause I know I have to. I've made no plans for the next 2 weeks other than work and dinner with friends Saturday night. Usually we go out most nights but I'm way too tired. I just hate how I feel but hopefully this too shall pass!
Bab
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Babs, I would usually lose 3-5 pounds during rads, but gain it right back. Rads increases your metabolism for a while. Try to keep up your protein.
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LA894 -
Don't think you are whining at all. Have just had rads for skull tumor pressure on 6th Cranial nerve. Caused double vision. Looks like its permanent. But I am grateful that I do not have pain issues. Don't mean to be a broken record for the Rads, and don't know where your met is located, but I received a targeted therapy that was very precise, rather than whole brain. I'm sure Gabapentin SE's are complex.
10 years of bone mets for me too. You are a fierce and strong woman. Its a long trip. I feel so fortunate to keep going. The docs seem to keep putting me back together, so I can have a quality of life with my family. I'm eager to start my new systemic treatment with hopes some new symptoms will start to subside.
Hang in there. Keep being fierce!
- JeeNee
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Babs- Hoping the fatigue and appetite issues improve soon! We all want you to feel great during your upcoming Paris trip.
Z- Your results sounded encouraging until that liver report😳. Unfortunately we doubt those we should be able to trust. You have studied and can trust yourself more because you learned to be your own advocate. It strikes me that if you had 30+ tumors in your liver you wouldn't have been able to manage five weeks of treatment in Japan. The new treatment plan sounds like a good decision!
Thinking of Mom/Dani and Patty, Lita, Wendy and Artist and Shetland...and many others...
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Hello fellow travelers on the Crazy Train!
Thanks going out to everyone for the incredible support for others on this ride. I know we are all thinking of Mom and Dani, Lita, Illimae, Patty, Wendy, Micmel, Lynne, Babs, Kandy, Z and others who are dealing with treatment changes and uncertainty.
I wanted to give an update on my brain stuff.(Thanks again for talking me off the ledge when this first appeared.) The neuro-oncologist in Denver (second opinion on the brain lesion) said that since it seems to "come and go" on the scans it makes sense to treat it as trigeminal neuropathy rather than metastasis. This is good news if true. (I want to believe.) The symptoms seem stable so now we are treating it that way. My other docs had prescribed anti seizure meds, which cause a lot of dizziness. His idea was to try an anti-depressant in the evening instead. It's an old approach, but evidently it has worked in the past. It's often used for those who have Bell's Palsy. A dear friend who had Bells described the facial pain, numbness, tingling and vision changes she experienced...they seemed similar. So...new meds and less dizziness! The constant headache above my eye has improved, too. We will continue to scan and I have an eye appointment later this month to see what is causing the vision issues. Who knew I could be hoping for Bells Palsy!
Back in Illinois as of the end of October (Sooo flat) and in the midst of a huge renovation project as we convert a two unit apartment back into a single family home while living there. Glad the dizziness is better as I'm spending a lot of time on ladders.
One nice part of being back is being able to visit my DD and grandchildren in Evanston and going to their hockey games. Bleacher time is scheduled for this weekend!
Thinking of you all and sending wishes for a pain free weekend.
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Iwrite, sounds like a better than mets plan and treatment, hopefully your symptoms resolve soon. I had some leaky eye/blurry vision a few months ago, which turned out to be a minor tear duct issue common with taxanes.
So much progression lately but if I've learned one thing in my first year with cancer, it is that ups and downs are probably the one thing we are all certain to face at some point but we are an adaptable bunch for sure.
Tuesday 11/14 is my post gamma knife MRI, I should know how the treatment worked on Wednesday and will update.
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Kathryn - I also have trigeminal neuropathy. I am slowly increasing dosage of gabapentin to treat it. It hasn't helped with the neuropathy yet, but I have to say the gabapentin for me has some very nice unexpected side effects - namely deep relaxation without any of the yucky "high" feeling that narcotic or opiod drugs produce. I realize you may have already tried gabapentin and had the dizziness that some get. But if not, you may want to try it. Hugs..
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Hi everyone I don’t think you know me but I know you because I have been “lurking “ for a long time. I have mets to the bones in many areas and it seems to have progressed to the liver. My doctor ordered a CT for next Wednesday and on Friday we’ll meet to discuss the r suits. All this year I’ve been on Abraxane chemo and lost my hair. Dr Wang said we might try the new generation of medicine like Ibrance combined with Faslodex. I was first dx Mets in 2013 so I’m in my fourth year. I hope this new combo destroy all those cancer cells.
Hope everyone has a pain free weekend.
Aurora
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Auroaya,
Hope your new treatment is very effective in treating your mets! May you enjoy a pain free weekend as well!
Stay positive!
-JeeNee
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welcome auroaya. how are you feeling?
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Hi Aurora! I remember you and its so nice to see you again. Welcome back.
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Zarovka thanks for asking I’m feeling well. I’ve been lucky that even from my stage IV diagnosis I’ve been asymptomatic so fortunately I’m feeling ok.
I know TMs are not reliable but my doctor goes by them. I’m also getting a scan so that’s good.
I read all about your trip to Japan and I’m excited to see what happened if anything.
Sending everyone hugs.
Aurora
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Aurora, We would never forget you. You are family. I posted a short message for you on the Ibrance thread, but I want to repeat here that I am sorry that you have experienced progression. I was very nervous when my mets expanded their home into my liver. I thought I would go downhill quickly, but here I am! I clearly remember the advice you gave me more than year ago, and I still follow it. By that I mean that I continue floating down that river of denial you told me about. I will be interested to hear if your MO decides to put you back on Ibrance or chooses one of the newer medications. Whatever it is, I hope it clobbers those mets.
Love and prayers, Lynne
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I remember you, Aurora! Some of us have been around a long time! Welcome back.
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Lita...such good advice about rads. I've only had palliative rads which my oncologist wanted me to have before he started me on the Ibrance/letrozole trial but it was when my bones were at their worst, with several spinal and rib stress fractures and I also had to ask for help to lie down and sit up again. I would also advise anyone to ask for this help because if your bones are in bad shape, getting up from that table can snap a bone just like that.
Iwrite.....I'm a great believer in denial until I'm presented with the facts. I believe everything is fine until I'm told otherwise. It sounds like your possible diagnosis is a better one than the alternative and I'd go with that.
LA894...you don't sound whining to me. You sound like a winner and I admire your attitude. The bone broth sounds good so I'm going to try it. Everything we can do to spruce up our nutrient intake has to be good.
illimae...good luck with your scan result.
Auroaya....I haven't "met" you yet as I've only been on the site this year. It's nice to meet you but somewhere else would be better. I'm sorry you've experienced progression. I'm on a combination of Ibrance and Letrozole and on my ninth cycle so it's somewhat similar to your proposed treatment and so far it's keeping my bone mets stable (long may it last). I hope the combination of Ibrance and Fasiodex works well for you. Good luck with your scan next week.
Everyone else....I'm sorry if I've missed you out. So much is happening at the moment that it's hard to keep up but sending hugs to you all
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Hi All,
I had a bit of a surprise today. I know that several of you have experienced some very real problems with quality care but for the most part I have always felt very secure in the care I receive from the Cancer Agency where I live. Today I went to pick up my meds for my second round of Xeloda and the first dose of oral bisphosphanate. My first surprise was when the pharmacist went over the guidelines for the bisphosphanate. She got to the part about alcohol... alcohol consumption in small amounts will not affect this medication.. and then proceeded to tell me about the risks associated with drinking alcohol and getting breast cancer (she indicated 20% risk if you have two glasses per day which I am pretty sure is wrong). Well that ship has sailed! And quite frankly I don’t think those were appropriate comments for a Stage IV patient.
But it got better. When I got home from work I found that I only had 12 days of Xeloda for what is to be a 14 day cycle. WTF? Am I over reacting? I am really annoyed as I think screwing up my medication is simply NOT on. As someone who has had significant progression in very few months since diagnosis I don’t want anything to reduce the efficacy of the latest treatment, particularly since I am 0 for 2. Thankfully I caught it but feel a deep seated need to tear a strip off of someone.
Okay, rant over. I want to thank those of you who responded to my question about rads. After the last couple of days I am at peace with the decision to go ahead with them next week. Hopefully some of the nastier side effects will not materialize.
Wishing you all a peaceful weekend. For those facing new challenges my thoughts and prayers are with you. For those with good news, well done!
Pat
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Pat - At this point I am resigned to the fact that I have to check absolutely everything. You did great noticing the issue with the pills. Nice work.
Speaking of which, I have a biopsy of my sternum coming up and I need to make sure the tissue sample gets handled properly. Can you all remind me of the issues getting an accurate read of the hormone receptor status of a bone biopsy. Something about decalcification ... any and all details welcome. I will have to call the lab next week and sound like an expert in this stuff ... to make sure it gets done right.
Also, are there genetic tests that can be performed on bone tissue?
>Z<
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Illimae. Hoping you get good results this week!
Pat I learned when my Mom was dealing with BC that you need to check EVERYTHING !!!
Hi Aurora. Glad to see you back! Thank god many of us are still here to welcome u again
One week done. One more to go. Can't wait for this to be over! I took my second ever pain pill since I started this journey. I needed to have a full night's sleep! I feel so much better now
Wishing you all a good weekend
Bab
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Babs I haven't had radiation yet so no advice but I'm glad your feeling better sleep is everything.
Aurora I remember you of course nice to see you back.😊
Did anyone hear how Patty is doing?
Z I think you and I have a similar cancer. Your cancer has remained hormone positive right? You already had a liver biopsy right? I hope all goes well for your sternum biopsy I'll be sending good vibes.
So on my second week of Xeloda nausea is lessening so I think it's working I scan on Thursday next week scared to death of this one. Sadie I've had similar issues with the BC cancer agency we really need to be on our toes. How are you finding Xeloda?
So tired all the time but my weight is returning so I guess that's something.
Momallthetime how are you and Dani?
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Wendy - I've seen situations where Xeloda brought things under control quickly. It's an incredible drug for many people. I do think dose can be a lot lower than what is often prescribed. I am very curious about your scans but expecting good things.
I have no idea what the hormone status of my cancer is. They screwed up the handling of the biopsy sample I got before I left for Japan. I am getting a second biopsy on the day before thanksgiving. Then we wait for answers. My guess is that I am ER positive.
Babs - I am so glad that you are managing pain, and thrilled it actually works. Can't wait for more pictures from Paris.
>Z<
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Wendy,
I’m just starting the second round of Xeloda today. The first round went well with no issues beyond some mouth issues. I never had sores but could tell that the drugs were having an impact. The baking soda rinse seemed to keep it under control.
I still have the pain under my ribs which the onc thinks is from the peritoneal mets pressing on my liver. I’m also having back pain. I know it’s early but am feeling anxious about a response. Need some good news...
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Jeenee. Thank you for the info. My cancer is ER positive but aromasin, faslodex and Ibrance have all failed. For some reason my immune system tanked on Ibrance and I only managed 3 full months of treatment out the six I was supposed to take Ibrance. After a one month break my immune system is better. But, I am severely anemic and will be getting a blood transfusion on Monday.
My Oncologist hopes to keep my on Xeloda for a year and then maybe go back to something like kisquali and affinitor. She wants me to keep an eye on clinical trials also. Meanwhile, I want to pursue genetic testing. My Oncologist is having my tumor tested for something.
I don't have any pain in my shins. On Monday I will get my legs xrayed to see how much bone damage there is. I will also have an MRI to my skull. I had SBRT radiation to a skull met that was pressing on my eye. The doctor wants to make sure that has stopped growing.
I get Zometa every three months.
I sort of feel like every time I go to the doctor there is some new nasty surprise that requires 3 more doctor visits.
Hello and best wishes to everyone on this board. Your info and experiences is always helpful
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JFV -
I hope the blood transfusion will increase your energy and make you feel better, in general. It can be discouraging to have to change treatments and experience setbacks, but very good call on your Doc's part to get genetic testing. I think that will help point towards the right treatment for you. Meanwhile,
Xeloda could accomplish what you need. Many people tolerate it well and dosing can be adjusted. I had freedom and pretty good quality of life while on that drug. Fewer trips into the clinic.
After Xeloda, I was enrolled in a clinical trial with the drug now known as Kisquali, Affinitor as well as Exemestane (aromatase inhibitor). That gave me another couple of years of progression free survival. The combination has stopped working, so I am on to another clinical trial. I'll let you know how that goes.
A word of advice based on new developments. If you have spine mets, ask for MRI imaging. Don't rely on CT alone. MRI picks up epidural tumors that could lead to spinal cord compression and serious loss of functioning.
Take good care and keep me posted.
Best,
JeeNee
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Saddieservant,
I'll be hoping you have good response to Xeloda. It is strong medicine. If mouth sores get worse, ask for magic mouthwash, gelclair, or triamcinalone paste (if you have open sores). Biotene toothpaste is the mildest one. If you are Er+ , ask your Onc. about treatment for that. I wasn't thinking much about that while I was on Xeloda. But it turned out that although arimidex and faslodex had stopped working for me, I still benefitted from a hormonal treatment (after Xeloda) and did better(for a while) once I was on another aromatase inhibitor.
Take very good care,
JeeNee
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Thanks JeeNee. My MO has indicated that the next stop will likely be the A/A combo if Xeloda doesn’t work but I am hoping for a good run on this one.
You’ve given me something to think about with the scans. Bone scans were useless for me for some reason. While the July CT showed progression my onc thought it could be healing. October CT made it clear that there was progression, primarily in the spine. I had been planning to ask for a PET but perhaps MRI would be better? I’m definitely dealing with some issues with my spinal nerves.
Thanks for the support.
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Sadiesservant...I have mets down my entire spine, with three stress fractures and spine compression which has caused loss of height. Recently I had increased pain and he sent me for an MRI to look for any nerve impingement. MRI is definitely the way to go to check spine mets and any misbehaviour on their part. Fortunately it wasn't nerve impingement or progression causing my pain. I hope it goes well for you but, like Jenee, I would be asking for an MRI given the choice.
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Yes Saddieservant - please ask for MRI. Baseline will be good to have.
Leapfrog - sorry to hear about your fractures. They are no fun to manage. Spine mets can be the worst for recurring pain issues.
I'm having issues with spinal cord compression in lumbar spine. Was acutally caught on CT this time. However, when I had epidural tumors in my thoracic spine, only showed up on MRI. Had emergency surgery as a result. I'm full of titanium screws and cement now but no loss of functioning. Not sure what I'll do about lumbar spine. Not up to another surgery. New systemic treatment starts this week. Hopefully that will knock the tumors out.
-JeeNee
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