Bone Mets Thread
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Mom, I had sbrt to T6 and L2. I was vomiting after the first treatment. After the treatment was over, I was okay for a week and then the swallowing problem started. I took generic zantac and it helped a LOT. I took the nausea meds for the week of treatment and one week after. I woukd be prepared with the zantc and the nausea meds. The swallowing pain only lasted a week. It was pretty painful but when it healed it seemed to heal very quick. I was on here whining about my swallowing pain all the livelong day. I am not very good about SE. I get really pissed off and quickly become non compliant.
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neephee- I'm on the Kisqali/Aromasin combo. Haven't seen many others mention it.
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Momatt- They have so many treatements lined up now for Dani, it seems they probably have to get her started and make sure that she's responding, then can add immunotherapy, which takes longer to kick in, if it even will. We all just want her in a safe place first, getting some good response to the radiation and drugs they are giving her!!
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Curi-ous that makes me feel a bit better. Very concerned about the SE's from the Rads now, but hoping for the best.Thanks HLB for your experience.Gonna try to keep an eye. Bless her heart she has a tendency of not complaining, she believes in her heat/mind that if she won't express it it's freaking NOT gonna be there. Whatever makes her tick.
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I've found a couple of posters that I thought it might be nice to share with you all.
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And....
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Mom - immunotherapy can follow rads by 1 to 12+ weeks and still get a kick from the rads, according to the specialist in Japan. The radiation effect is surprisingly long lasting. If I were to do it, I would get rads here and then fly back over there a month later after completely healing from the rads.
In any case, the current focus on stabilization and liver functions is entirely appropriate.
>Z<
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First of WELCOME HOME!!!! Zar you did so much in so little time, amazing amazing!!
I was just writing in the other thread, how it does makes me feel a bit better that she did not miss the boat on immnunotherapy. She has it approved, but they still felt better to give this now.Let's hope there is some sanity involved here.
Leapfrog the first one is real nice.thanks.
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Hi Ladies,
I've developed some issues with my back and am hoping you can provide some insight as to whether or not this is likely due to the bone mets in my spine. A recent CT confirmed progression in a number of places along my spine. Last week I started having trouble with my hip/right leg. When I get up in the morning I can barely stand on that side with sciatica pain running down my right leg. It takes me a few minutes to get it to the point that I can stand upright. It's gotten worse over the last couple of days with some constant pain in my hip and aching down my leg. I'm having trouble finding a comfortable position as sitting aggravates it and standing only works for so long. (Thankfully I have one of a motorized standing desk in my office so I can adjust my position frequently.)
I have had lower back problems for some time and this certainly not the first time I have had sciatica. It may simply be a function of overdoing two weeks ago. (I had to shift some things as I'm having some renos done at my house.) However, this is a bit more persistent than usual and I wondered if it could possibly be due to the mets pressing on a nerve. Have any of you experienced anything similar?
It drives me crazy that everything becomes a cancer issue!
Thanks all.
Pat
(BTW, If you want a laugh... for the first time in my life I wish I had a slightly different anatomy. Getting off the toilet in the morning has turned into an ordeal. Standing up to piddle would be awesome! LOL)
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Pat,
What you are experiencing sounds a lot like pain I had about 2 years ago that was mets related. I would have sworn my leg was broken. It sent me to the ER and rads. Since it’s severe and persistent I’d definitely let your MO know.
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Pat why make yourself miserable with pain and uncertainty? How far back was your last scan? It could be so many things as you know, but definitely a scan is the only way to know what it is in fact. Feel better.
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Thanks. Mom... my last scan was only a couple of weeks ago - October 12th. I have a number of mets on my spine which have progressed (lumbar and thoracic - possibly sacral but I would need to go back to the July CT). Just not sure precisely which vertebrae.
I likely see a NP next week but will definitely mention it if it's still an issue. Really hoping Xeloda beats all of this back. So far I'm 0 for 2 in terms of treatments working!
Pat
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Pat, I also had severe leg pain around the time I was re-dx'd in 2014. In my case, I struggled with it worsening over several weeks, and when it finally became unbearable and I went to the ER, I was shocked to find out I had a fractured femur and afracture in my pelvis that required emergency surgery. Your description about having a difficult time sitting on the potty reminded me of having the same problem back then, so I would encourage you to ask for an MRI to rule out any possible pathological fractures, which are not uncommon with mets. Hoping that's not what's going on in your situation, but worth getting it ruled out to be sure.
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sadie,
Sounds like me last year. If you say nothing they won't do anything to remedy it. Call your MO asap to get you a consult with a rad onco. They will fix you up immediately. Don't wait til it's so bad you end up in the er like I did.
These things can escalate quickly. I have multiple back stuff, too...degenerative arthritis, bulging discs, etc. But anything that doesn’t go away in a wk or 2 should be checked out.
Rads got rid of my problem.
L
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My RO emphasizes that the scan results and your pain may not match. Your pain is more important. As Deanna said, an MRI is let you know of any fractures.
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Thanks to everyone who replied, read every single post but so much to answer!
jensgotthis thank you so much, I will check it out although I sometimes have trouble opening links from this page. Will try to copy paste.
zarovka so much knowledge! Infortunately I live in the Dominican Republic, I doubt those medications are available here, I wonder if even Xgeva is taken here. No trails either. No real opportunity to move to a more developed country. I would ask or explain my onco (best in the country, great person too for the last 8 years) because doctors here are easily offended and think you are questioning their knowkedge or whatever.
It's slightly harder to suggest alternative or new medication around here not to mention expensive. But I want to do everything possible to live as long and well as I can. Luckily all doctors here travel to conferences and might hear about these new discoveries or at least I really hope so.
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Sadiesservant....I agree with dlb.....I wouldn't waste time wondering. See your MO. An MRI will rule out whether it's nerve impingement. I don't like making ad hoc diagnoses. That's not what we're here for but recently when my back pain worsened not long after a CT ruled out progression, I was sent for an MRI. It turned out that I don't have nerve impingement and needed to raise my pain meds but yours could be a nerve problem. Definitely don't waste time wondering when it can be checked into and you can get a definite diagnosis.
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sadie - with that kind of pain, don't wait a week to see a PA. get the ball rolling now.
ceci - some drug companies have compassionate use programs to make drugs available in countries that haven't adopted the treatment officially. I would not assume you do not have access to a PDL-1 inhibitor. You may find your doctor anxious to play with advanced drugs and willing to fill in the paperwork for compassionate use. I expect you have access to radiation in some form and the combination of radiation with immunotherapy treatments is powerful.
Press your doctor for treatments that engage the immune system in fighting cancer. You may be astonished find that your country is ahead in some respects. We have a long list of constraints on bringing drugs to market that filter what we gets to the clinic and the biggest one is return on investment (ROI). Treatments that can't be monetized for an return on investment do not move forward. However, there are non-proprietary procedures and plant based therapies that are effective. It takes an honest an experienced doctor who knows this terrain.
>Z<
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Thanks everyone. I sent a note to my MO to make him aware. I don't think it will change much in terms of treatments at the moment as I just started on Xeloda but this stupid pain is still an issue. Definitely sciatica.
Appreciate the support! Pat
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Z, your wealth of knowledge always astounds me. We benefit so much from your intelligence. But hey no pressure......LOL! Hope you are feeling better being back t home and the treatments were a rousing success.
Same with you ladies! I come here pretty much every day for support and information. I love you all!
Pat, I hope you get that pain beat back soon so you can resume your "normal" day to day living.
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Thanks Artist...
My MO indicated that I have a met on L5 which could be causing these symptoms so he's referring me to an RO. Luckily my MO is pretty awesome and very responsive. An email is all it takes...
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Thanks Artist. I sure hope it works too, but it is the same as any treatment ... now I sit around and wait and see if things get better or worse. Once I start getting information, I get to pour over incomplete data and speculate wildly as to the reason ... it's awesome!
Z
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Pat that's the way it should be. So glad you are taken seriously. The L5 could cause enormous havoc.
Z you got that biopsy still to take care of, you got lots of incompetence to go through no doubt.
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Good evening ladies,
So here is a story of incompetence that had me fuming today. Went to my onc appointment at 11:00 she was worried because of the pain I'm having in my stomach along with nausea and diarrhea that my cancer has started up again. So instead of taking ibrance and letrozole she suggest 1650 mg Capectabine just to be on the safe side. I scan on Nov 16th so then we will know what is going on and can decide further. So I was okay with this. So she instructed me to walk to the BC cancer hospital which is two blocks away (not terribly far but in my sick state not fun) so I go to get lab work done drop off the prescription and they tell me yes as soon as we have your blood results we will get you the drugs. So I go and wait at the lab a half hour goes by and I'm still sitting there I ask what's up? They have no requisition from the doctor so I phone "oh yeah we will fax that" the girl at the lab phones and they tell her the same thing. Another half hour goes by, by this point I'm getting pissed. We each phone again then I said should I go back to her office and raise some hell the lab tech was like yeah it might be faster. I can barely stand and now I have to jog back and bang some heads together. Omg I got there and they had no friggin clue I had just been there.
Are we so easily forgotten? I wanted to scream at them all . Wendy had a melt down lol.
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Wendy, that is so terrible. This is wrong in so many ways. Vent away--we all agree!
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Wendy. All I can say is unbelievable.
Bab
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Wendy...I am so sorry that happened to you.
Mom...I have had RO to the C, T, and L spine. My throat became a little sore but it was not so bad that I was not able to eat or drink. So I think we all experience SE differently. I also know that nutrition is huge in tissue healing and regeneration. You can ask the RO or MO for magic mouth wash for the sore throat if it becomes very painful. I did not need it. I did however make sure I rinsed my mouth with a baking soda and salt rinse. To assure I got good nutrition I drank protein smoothies with crushed ice. The liquid was cool and felt so good going down. The great thing about the smoothies is that I could throw in any number of yummy things.
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Pat2, I've also had trouble with sciatica from hip to ankle. If the RO isn't able to eliminate it, there is this thing called nerve flossing which is just a particular way to stretch that has helped me. I have also found that doing a few situps for abs and a few superman for lower back helps. Here is a link to the nerve flossing.
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Wendy - I am sending you hugs and strength, not that you need the strength you tough lady. Try to take some time today to treat yourself the way you deserve to be treated ... like a nice bath or something.
I am terribly concerned about about this pain. I really don't understand waiting two weeks for a scan. Someone suggested ultrasound? Are there other diagnostics that will give you information sooner? Not an expert in this presentation of symptoms but I am concerned that they put you on a strong drug with crazy side effects without knowing if you have anything to treat. I agree with being proactive in treating the pain but that starts with being pro-active about accurately diagnosing the pain. What if it is something else ?
I know that bashing heads together and questioning the treatment protocol is not what you want to be doing given how you are feeling. But I am afraid the incompetence runs even deeper here ...
>Z<
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Gosh, Wendy, I'm so sorry that happened to you. It would be aggravating any time it happened, but when you're not feeling well just adds insult to injury. And I second Z's advice to treat yourself with some extra relaxing TLC today -- even if you don't feel like getting out and just make time to call an old friend or something else to feed your soul.
I also wanted to comment about going from Ibrance to capecitabine. Depending upon where you are in your Ibrance cycle, if your granulocytes (or neutrophils or ANC) are low, jumping to capecitabine, which is chemo, may not be wise. I know because mine were, and it was one reason I was titrated up on capecitabine over a couple of weeks -- just to be sure it didn't tank my counts even further. 1650 is probably a low dose for your height -- but I would still be careful, as well as a bit leery about leaving your current regimen if, as Z pointed out, not only because the cause of your pain is undx'd, but also because capecitabine can cause the nasty digestive issues you're already having.
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