Bone Mets Thread
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three tree I agree with you about the new site.. I don’t use it much because of all the things you said
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I plan to talk to my second opinion doc about Travera but if I go the Enhertu route, I may keep Travera in my back pocket until later. Thank you all for the kind words. I can look put together and in control on the outside but my brain is doing circles and I’ve got a terrible tension headache. Every time I woke last night, the first thought in my brain was the word Enhertu. Obviously my brain can’t stop thinking about my next steps. I’m so sensitive to drugs and getting weary of battling side effects and the side effects from drugs given to battle side effects.
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rk, I feel for you. I really get the part of growing weary of side effects and the whole nine yards; I’ve been there numerous times. It really wears on a person. Please hang in there. Thinking of you.
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Rk2020 - I just really want to add my sympathies here too. I'm just very sorry that this is happening to you, and I hope you find some sort of resolution. I totally agree with Divine about just how wearing this all can be on a person, and how sometimes you just don't know how you are going to deal with it anymore. How much is a person supposed to take? It does look like you have some options that you can consider and that is a positive. Hang in there, power through and all that, and please keep us posted. You know that so many of us here are pulling for you and keeping you in our hearts and minds. Good, good luck to you!
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Positive2Strong - Just saw your comment. Nice to know I'm not alone in my thoughts! Thanks.
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mkestrel - Love the photos! At first I wondered if it was close to my area ("east Puget Sound lowlands"), because so much of it looks like the Cascades to me. Then I saw that you are in Idaho and it made sense. A bit farther away, but still a lot the same.
We've been getting more and more wildfire smoke here too over the last several years. We get it from California, Canada, and even Alaska. I have an old friend who's been living in Anchorage now for decades and she says they'd been getting it there too for years before us. Now it looks like the east coast is getting some. New York seems to be experiencing this perhaps for the first time from what I've been reading about their reactions there. I had thought it was a bit of a "western thing" but not anymore apparently.
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rk2020- I put a comment on your post on clinical trials. I stopped the zometa a year ago - my doctor said that I had enough in my system for years- after awhile the risks of jaw issues outweighs the benefit she said.
Feel free to DM me about Enhertu if you have questions- there is a site on BCO- not super active however- I suspect more and more people will be joining. many people have few problems with it especially after the first cycle.
For me, bad news brings me down so much for a week or two that I have little energy to deal with much of anything else and I don't want to keep living such a provisional life- then I pull back from that and seems to buck up again.
hugs!
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Hi three tree in the northwest. The Mountains are home to me, so I try to go as often as I can. The fires make me sad, the smoke is miserable and I hope the crazy weather doesn't start more. The beetle killed trees go up like tumbleweeds.
More radiation for me to new Mets, change letrozole to faslodex. I asked switch zometa back to xgeva. Why should I have to get an infusion when there is a shot just because insurance doesn't like it? Different insurance now so hopefully it is approved. I've been stabbed so many times they're having trouble starting the IV. Kind of annoyed me that I can see the pet ct report and fret about it all week but when I'm at the appointment the doc hadn't even looked at it yet. I know I'm not the only patient but it doesn't really give the impression that my case is being thought about much. I'm also angry and sad about having progression but at least so far it's not in other organs. Grumble. @#$& cancer.
Here's the hot springs that calls me. We went earlier this year for our anniversary.
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Oh I love that water shot! So pretty…
I grew up that way (well at least for 10 years or so) and frankly would rather not have to see snow or mountains again :) I remember the volcanic explosion years and having to wear face masks and the like, people getting caught out on flights (including us one year at Christmas) etc. Went to college in the West where there were wildfires some years and you could see them burning on the mountain ridges as you went about your business in town, or the deep scar lines on the mountain sides if driving somewhere through the passes. Its definitely not healthy at all to breathe all that smoke, but what can you do?
I hope you find something soon that works for you RK. Dealing with pain and change and worry at the same time is exhausting for sure - but a different sort of exhaustion. I was just making coffee and feeling like someone had steamrollered over me mentally yesterday, but I know most of it is from dealing with the ongoing hip irritation. It just lays over you like a super heavy fur coat and I wish I could take it off and be a light, free human being again.
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Mkestrel
Thank you for the photos. They are beautiful, and as someone else posted, soothing to look at.
Sorry for the progression, but glad they can treat it. I had radiation for a large pelvic met (3 cm x 1 cm) last year and pain was gone after the 2nd of 5 sessions. Minor residual soreness for a few months that felt like a tight hip flexor but not even worthy of a Tylenol.
Don't know what insurance you have, but Medicare approved xgeva for me with no problem. I get the injection when I have the faslodex injections at the infusion center. I take Claritin the day before and day of and haven't noticed any SEs. Have been on it for 9 months.
Totally agree with you about feeling like an afterthought to the MO. Frustrating to watch her sit there and scroll through my file while I'm trying to talk to her. Infuriating to read her post visit notes online where she includes her time for "reviewing the file and preparing for the appointment". SERIOUSLY?
Please post about how the radiation goes.
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let me just tell you all how wonderful it felt to have your support and read your kind words. And mkestral’s pictures have a calming, therapeutic quality to them that I just want to breathe in.
Yesterday was a special kind of crappy day. Besides my recent news, I made the mistake of forgetting to take my prednisone and I got so sick. Felt like a bad flu. Terrible. And my gallbladder is acting up. But today is a new day and I’m feeling SO much better both physically and mentally! I made plans to meet a girlfriend for lunch, I’m sitting in my pool spa enjoying the massage and I have a husband who once again confirmed that he will drive me wherever I need to go for treatment. For so many reasons, I am blessed. Now if this cancer would just buzz off, I’d be golden!
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and my pet peeve is unprepared, harried doctors! GRRRR! This is my LIFE at stake. Treat me like I matter.
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@RK2020- I'm sorry your liver Mets increased. Thankful you are tenacious and drove to the oncologists office ! It is unreal how hard we often need to fight to get started . In your pocket for the start of new treatment and sending good energy and prayers to you that this one kicks the cancer back .
@MKestrel - love your photos . I live west of Seattle and also love to hike . Sending you good energy/prayers for faslodex to work wonders and the radiation to take care of the pain .0 -
MKestrel - I identify with a lot of what you are saying. I'm 45 and cancer has upended my life in so many ways. The struggle to maintain mobility is probably the largest and most challenging. Like you I still work and live alone so my mobility and ability to provide for myself is a necessary thing for me. I am hoping the Faslodex will work for you also. I have been on the Verzenio/Faslodex/Xgeva combo for 3.5 years and it has kept my bone mets stable for that time.
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Tomorrow is my first scan since starting meds and also a Zometa infusion. I wonder now that this is my third infusion (April, May and June), will I be able to go to every 3 months? Is that normal protocal??
Next I have a question about radiation. Haven't discussed this with MO, but can a shoulder blade on left side be radiated safely that it doesn't zap the heart? Both sides are painful and the heavy load is on the right side, yet the left side hit a 9 pain level this past week.
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Irish
Thinking of you as you have your scans today, with fingers crossed for good results.
I am on xgeva and have had monthly injections since last October. Research shows that it provides added protection from bone mets, so I am on a "wait and see" approach for a while longer before asking to space the doses further apart.
I had SBRT to a pelvic met and to a skull met last summer - yes I wore that mask and it's a traumatic experience. The skull met was on the clivus bone, a really small bone which protects the front of the brain stem and is surrounded by important things like optic nerves and the pituitary gland. The RO was able to pinpoint the area and successfully treat the lesion with no damage to the surrounding area, so I would feel very confident that it would be safe to radiate a shoulder without impacting the heart.
Very interested to hear your scan results, as I also have significant pain in left shoulder area which has gotten worse since last August. Nothing has shown on scans so far, and my next scans are 7/5.
Hope this helps
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Irish, ask your MO for referral to Radiation Oncologist and discuss those questions with them. I had radiation to left shoulder. They mark dots to show where they radiated you. The triangle is all of 3" per edge. Maybe a lead shield like the d3ntist uses is used if your concerned. I don't remember.
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eleanora and gailmary, Thank you both for your responses. I will inquire next MO visit. Somewhere in the past when I was first diagnosed with b.c., I recall the RO talking about the heart if we were to radiate the area. I chose a mastectomy for that very reason. I'm not sure how healthy my heart is after doing Mitoxantrone for MS and having to quit early due to greatly reduced ejection rate and a small hole in the heart. This was back in 2005, so I know the ejection rate improved greatly but the hole remains. The precision with radiation sure has improved.
Not sure how much the scan will reveal as we did it without contrast and the MO only ordered chest area. We are conservative with contrast as I have developed UTI's from the contrast due to a neurogenic bladder. The contrast lays in the urine that is not always completely eliminated from the bladder, again a MS problem. My next appt. is 6/22 with MO.
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Emac877 it seems like the biggest goal is to stay mobile. Some days it's really hard to make myself move. I'm glad yours has been stable. I guess I should update that I was approved for SSDI but have been waiting 6 months before they will finally send the benefits. My husband's insurance is ok but high deductible.
We went to the mountains again before the next round of radiation. There were loud thunderstorms but we hid in trucks and cabin, then hiked some more, soaked in hot springs.
Irishlove some of my treatment is to left shoulder blade too. I think they set the targets very carefully to avoid any damage to heart hopefully. I'm covered in new dots tattoos 😩. Doc called it spot welding...
Aprilgirl11 thanks for the kind thoughts..
Rk2020 more mountain therapy pix
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Beautiful, peaceful, mountain therapy. thank you
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mk, those are gorgeous photos!
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mkestrel, I love your mountain pictures. I miss our home in the NC mountains terribly. I'll ask about spot welding. lol
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Those mountains are calling me. I just can't tell from which direction.
Got back from scans, took a nap and woke to find report in my chart for bone scans. Everything looks great. Just arthritis. Jaw too. My mouth wouldn't open wide the last 10 days but it had just mild uptake. Did I say that right?.
Cancer been acting up in the lungs. Most anxious to see that. Might have to wait till appointment on Tuesday. I thanked the Dr once for posting it before appointment. He just smiled. I hear sometimes they don't post till after they tell you. Bad news anyways.
Wishing all of you the same news on your future scans.
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Gailmary - Congratulations on your scans and thanks for the good wishes for the rest of us. There was a new law passed a year or two ago that requires test results to be posted to your portal as soon as they are available, so your other results should show, and you don't have to wait for the doctor unless you want to. Some do prefer that
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Threetree, thanks. I didnt know about the law. Yet i was told last month it could take a week cause they are backed up. Makes you wonder if somebody else reads it.
Gailmary
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Gailmary - I know what you mean about the back up, so yes, if they are behind, the results won't post until they finally get to it. All these places seem to be way behind these days. I've had some of those problems too. I think it is the "post Covid" environment; staff shortages, etc. So unfortunate for so many!
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Cross posted. Saw the MO today. He said after handing me the CT scan results "This is a miracle". Oh my gosh, the meds have worked greatly in just 3 months. Next step is Pet scan in August to see what lights up and then I can start radiation aka spot welding. Never thought I'd hear a doctor talk about a miracle.
Cross posted this also. I do have a problem though, need input. I checked urine tonight and sure enough another UTI. I just started cycle 4 earlier today of Ibrance, do I need to stop it whilst taking cephalexin, aka Keflex? Hope not.
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Hi everyone. Kinda quiet on this thread. Wonder if someone can jump in to give me information on radiation for bone mets? Should be starting in August. I wonder about proton therapy and zapping areas near the heart? There is a specialty center near me that offers that service. I read somewhere that Medicare approves the service and I have Medicare Advantage. I do not have a RO assigned to me as of yet, just gathering info. Cross posted on lung mets. Thanks and hope everyone is holding there own.
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HI irishlove, my mets are to my femur, sacrum, hip, and when I asked about proton therapy they did not recommend it bc I had just been radiated in a nearby area and they were concerned about fragile bones. I don't have a lot of info on proton therapy, but I wish you all the best. Have you spoken to the RO? Mine is so lovely and warm, that I feel very lucky to have someone like her to speak to about my questions and concerns.
All, I'm so sorry I have been MIA. I'm finding this site so frustrating to navigate and can never find my way back to my favorite topics. Anyway, I have a scan coming up next week. Hopefully things will be quiet and I can continue on my routine.
Rk, I'm so sorry to hear about the progression, but glad you've been feeling a bit better.
Mkestral, thanks for sharing those lovely photos.
Beth, verzenio and fulvestrant didn't work for me, despite my cancer still being estrogen positive, so for now the doctor has taken me off the hormone inhibitors. I'm just on Lynparza and xgeva. I hope you find the right meds to help you.
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Irishlove - Count me as another one who comes here far less frequently now, since this forum was "downgraded" so badly from what it was.
I just saw your post and want to say that I did get proton therapy after my mastectomy - all on left side, and it was due to my concerns about heart and lung damage, etc. My oncologist did not recommend it and I had to learn all about it on my own. They don't recommend it, as it is not "standard of care" in these situations. I would suggest that you do what I did, and arrange for a consultation with the proton radiologist to see what they have to say. I consulted with both the "regular" (photon) and proton radiologists and went with the protons. They say that if you've already been radiated in one location, they take it on a case by case basis about whether they can radiate further or not, so again a consultation would be in order.
I too live near a proton center, and it happens to be on site with my hospital and cancer facility, so I felt that I was very lucky that way. It's only 10 minutes away for me, and there were many people there who would come from other states and stay in hotels for weeks. I just felt so lucky that all I had to do was "drive up the hill". I have absolutely no regrets about having gone with proton instead of photon and yes indeed, Medicare does pay when most private insurance does not. It would be really worth checking out in my book. Best of luck to you!
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