Bone Mets Thread
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Artist - Caris and Foundation One are interchangeable insurance-wise.
>Z<
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Thanks Z! Let's all hold a revolt to jump off the crazy train....
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Artist - Here, here. So frickin tired of this.
>Z<
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Crazy train! I like it. In my house, we call it ridin' the struggle bus.
Same thang.
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luckylegs pm me and I will add you. we need some luckylegs.
>Z<
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Pat 2, will you have to go off Zeloda while you are having radiation? Best wishes on getting Sadie ready with the radiation. You can tell her you did it just for her.
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Looks like I have the unusual honor of mets to my shins. Ibrance isn't working. It's time to move on. My mets are still bone only but they are growing. Anyone here have ideas about what I should try next. Oncologist says Xeloda but she is open to letting my try other things. How do I figure that out
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I had tibial mets right out of the box. They grew exponentially on Ibrance in 3 months. I'm on Xeloda now. Waiting to see if it works. Once dosing is right it is not a hard chemo.
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Wow. I've been having some pain in my left shin and thought.. no way is that mets. For some reason bone scans do not show my mets at all and I've never had a CT scan of my legs. I thought it highly unlikely... sigh. Seriously wondering if my MO should start asking for PET scans for me. I think he is reluctant as I would need to travel to Vancouver to get one but I would rather have a better idea of what the heck is going on.
I was put on Xeloda after Ibrance/Anastrozole with my most recent progression in the bones and abdomen so am not surprised that this is the recommendation. I've only completed one cycle but Madame X has been kind to me - just a bit of trouble with my mouth (no actual sores but I jumped on it with the baking soda rinse) and a bit of fatigue this week (my off week). So far no issues with HFS.
Cive, to answer your question, I will continue on with the Xeloda if my blood behaves. My RO indicated she needed to connect with my MO re: timing. As I suspected, they have scheduled the radiation for next week when I am in week one of the second cycle, before my immune system goes into the toilet. She's just giving me one zap and has indicated that we can do it again in the future if need be although if it's too soon that would indicate it's likely not going to be effective.
Pat (2)
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Thanks Marylark.. Glad I'm not the only one with weird bone mets. Sandieservant, I have no shin pain. If the docs who did the scan hadn't insisted on scanning my shins I never would have known. Thanks for the good word on Madame X I think I'll ask to start on a low dose. Ibrance did a number on my red and white blood cells.
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JFV, I have had mets in both tibias since my original diagnosis. They were found during bone scans. I had read that they were unusual, but maybe they aren't as rare as we thought!
Lynne
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Pat 2 I'm just behind you on Xeloda and my issues are constipation big time and some HF already, but not bad. Nausea comes and goes.
JFV, Xeldoa sure seems to be a favorite choice after Ibrance. I was only on Ibrance for 5 months before progression. I asked for a low starting Xeloda dose too, but my MO said he wanted the higher dose because I have so much progression. I will dose reduce if I need to, but want those mets hit hard now, as radiation did not help at all. I'm the 1% whose cancer is radiation resistant.
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JFV, I noticed your post on the Ibrance thread as well. I keep an eye on that thread as Ibrance did not technically fail - my blood just had a hard time with it. My white counts were okay but my RBC refused to recover and as a result my hemoglobin just kept getting lower and lower.
I think Xeloda is a good option. It is not clear if the Ibrance failed or if it was the hormone therapy you had in conjunction with Ibrance. My MO wanted to hit my progression harder with chemo as all the hormone therapies take more time to see a response. I did mention possibly taking Abemaciclib once it is available here but his next step is likely Afinitor. Again, I think he wants to go aggressive as my cancer does not seem to be responding well to treatment (failed Taxol as well).
Sorry you are facing progression. Hope this is helpful.
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Thank you for your encouragement ladies.
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Hi all, checking in to celebrate all the good news, trips to France, pregnancies, and NEAD diagnoses, and sending prayers of encouragement for those of us awaiting results, figuring out next course of treatments, etc. Add my name to Thanksgiving week scanners, getting results on Black Friday. Uh oh...
Z, I will be curious to hear how you proceed with the sternum biopsy.
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So am I Jaylea, so am I. My onc agreed to a long list of diagnostics and biopsies today. At one point I was suggesting that I do a liver biopsy and a sternum biopsy on the two days before thanksgiving. The scheduler looked at me and said ... do you really want to be on sedation for two days in a row, right before thanksgiving? Not really.
Be careful what you ask for.
>Z<
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Z, I wouldn't put it past you. Aren't you the same gal who had a lung biopsy in the morning and a soccer dinner that night? But good on ya for getting on it!
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Hi Everyone,
I have a question that I hope you can help me with. I mentioned in a previous post that I had been having some significant issues with sciatica. My MO is very responsive and referred me to an RO right away feeling it could be the result of a met at L5. Well, I had the appointment with the RO and am scheduled for rads next Thursday (CT on Wednesday). The thing is, the sciatica has eased somewhat. It's not gone by any means but it is definitely not as bad as it was.
My question, would I see improvement in something like this from chemo with sclerotic mets? I am just finishing the first cycle of Xeloda and am scheduled to start round two on Saturday if my blood cooperates. I am still having pain in my abdomen (peritoneal and pleural mets as well) but know from other's experiences that sometimes one area responds and another does not.
While I still have some symptoms, I am wondering if I should pull the plug on the rads as they are no longer unbearable. (Mornings still not a lot of fun but it doesn’t take five minutes to get moving.) Still wonder abit if it’s the MBC or just normal wear and tear on the body....
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Sadie - Only time will tell. If you feel like you want to delay the rads until you can assess the pain a few more days or weeks, delay them. Rads are tough and you don't want to get rads you don't need. Just call and reschedule for a week from now or a few weeks from now. Whatever you feel will give you the time you need.
>Z<
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Hi girls....I don't have anything to offer in the way of knowledge or advice on the current topic but I've been reading your posts and want to send you all the encouragement and love in my heart as you face progressions and trying different drugs. At the moment I'm stable and I hope it stays that way but I can see you girls have been through a lot, yet you're still focussed on positive improvements. This site continues to impress me with the way everyone is so positive and cheerful despite having real problems. I often remark to my husband and son that I feel honoured to be a part of this community and how supportive, caring and knowledgeable everyone is. And how we help newbies to find their feet. I've joined a few Facebook groups over the past few months only to leave soon after because there isn't the positivity that is found here. I love all of you girls and send you every wish for good results in the coming week. I'm still in the middle of my current Ibrance cycle so nothing to report at the moment.
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I'm wondering what others experience with bone rads has been. I'm getting rads to my T1 and L1. I'm exhausted after only 3 treatments. My stomach is queasy and I have pain in my back ( not sure this is ca related). I'm findingthis really tough.
Babs
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bags,
My many rads experiences have been relatively easy. But, fatigue is a certain se. T1 made my esophagus sore for a while. (Brain rad to one lesion was the most tiring)
I never had any back soreness from radiation. Be sure to let the techs know and maybe you need to check in with your RO to see that what you are feeling is appropriate.
And the fatigue hangs around a while. Take it easy!
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Kaption. Thanks for the info. I started on Prilosec to help with any esophagus issues that could come up. Met with RO last night. He doesn't think the back pain is related. It could be because of how I've been walking to compensate for the numbness in my rt foot.
I'm just soooi wiped out!
Babs
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I will caution you to not stay on Prilosec longer than necessary. You stomach can become dependent on it.
Rest. You will feel better. Rads have, so far, been very successful for me in fighting pain.
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Babs - I have not had rads but I often read about how tired people get. You sound like someone who doesn't plan to stop their normal busy life for these damn treatments. I have always been inspired at your full life as go through this stuff. I am the same. I am the one that hosted a soccer team dinner the day I got a liver biopsy. Usually it's really the best thing to do, but every now and then one of these treatments gets the upper hand and I need to rest. What I am saying is... could be time to call in sick, kick back and watch your favorite drama for a couple of days. Who knows if its rads or just the whole ball of wax catching up on you. Or a virus. Remember those? Ah those, lovely short illnesses that end at some point.
Take care. Glad the rads and the associated healing have begun.
>Z<
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la894, how do you incorporate the bone broth into your daily diet? I have a 1/2 gallon bag of organic bone broth in my freezer. I’m trying to figure out how to use it without wasting it. If I thaw it out, I don’t think I can use it all within a week. I was thinking of maybe sipping a cup a day. Is that what you do, or do you add it to other items such as soups or main dishes?
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Babs,
Radiation absolutely knocked me off my feet. I wasn't expecting it. There was fatigue, and I had some nausea issues. So, don't think you are being a delicate flower - rads can be tough.
Like Kaption, I would caution against Prilosec, because it is a proton pump inhibitor, and the PPIs have been shown to cause some cardiac troubles with long term use. We Stage 4s do enough cardiotoxic stuff, what with chemo and all that. I've switched to Cimetidine, which is an H2 receptor blocker, and almost as effective as the PPIs. There's also some research that shows the H2 blockers as being bad news for tumors. http://www.lifeextension.com/magazine/2002/7/cover...
That article might have some "whoooo" in it, but I've got chemo induced GERD, and I have to take something for it, so I might as well take something that could beat up on tumor metastasis.
On the plus side, radiation really helped with my back pain. It took about a month after treatment, so, of course, I thought I was NEVER going to get better.
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Babs, I've had lots of radiation to my spine and have found that sometimes just being in the position lying so flat on the table can hurt my back. When your rad session is over, have 2 techs stand on either side of the table, and have both pull you up at the same time to a sitting position on the table. That alone can help your back as opposed to just one tech helping you back up. Yes the stomach can be queasy so you might want try some Zofran if that continues. I've had relief from all my rads except my hip rads which had not done a thing. Fatigue sure can be a part of rads and white counts can drop, so take it easy as you go through your treatment. How many tx's do you have in all?
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Thanks for the laugh BlaineJennifer. I love the "there might be some whooo" in it. I have a very well meaning friend who felt she could cure my cancer with a magic footbath. A very expensive magic footbath. Sigh...
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Babs, you've received some excellent advice here. I don't have too much more to add, other than to say RADS have ALWAYS worked for me....not immediately, mind you, but they have worked.
The fatigue and stomach issues are par for the course. I was given Famotidine (Pepcid AC? I believe) to help with stomach issues as I refused the Proton Pump Inhibitor (had done research on them) when I had thoracic area done. When I had my lower back radiated, I was warned of diarrhea, which I never got. My worse issue was swallowing when I had the thoracic done.
I HAD to have two people help me up off table when I had thoracic done. I was always in so much pain that there was no way I could even lie down on the table by myself. They had to help me lie down and get me back up. Don't try to be superwoman. Get the help. When I had my lower back done, a year later, I tried to be superwoman, and I actually ended up HURTING my back even more. You have to be careful. I had FOUR compression fractures back there, and these fractures can happen at any time, so be sure to get the help you need.
One more thing, we are the sum total of EVERY TREATMENT we have had. With every new Tx, it takes more and more and more out of us. Our bodies have been exposed to a lot of toxins, and we only recover so much in between each successive new Tx plan. You've been thru a lot. Be good to yourself. You don't want to be all run down b4 you get over to Paris. Rest as much as you need to.
Hugs, L
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