Bone Mets Thread
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sfcakes, I was able to stop working several years ago. I know many have to juggle this stuff around a work schedule so I’m appreciative that at least I have time to navigate everything. But it can still be tiring because there always seems to be snags in the system.
I think scones are a terrific way to make a trying situation a little brighter!1 -
Divine-I don't recall getting undressed but it's been a while. Maybe call the office to confirm? I refuse to change for my CT scan. I don't wear anything with metal. During Covid that was what they wanted, now they want to go back to gowns but I'm like "Nope." The less I feel like a "patient," the better.
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@chicagoan I totally agree! I make sure I've got no metal on me. I've had the same tech the last few times I've had scans and she always says "Looks like you're dressed for the camera!" Yes I am, not my first rodeo, unfortunately…
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I also dress with no metal for my scans. However, with the radiation being targeted to an exact spot, I wasn’t sure how that would work, but now I’m thinking that the spine will be lined up with an mri guided machine and that’s how the individual vertebrae to be radiated will be singled out. I appreciate the comments, because it got my mind to figuring out the process. Having such targeted radiation was not available when I was first diagnosed, so I’m grateful to still be around to benefit from the advanced technology.
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Hello everyone.
So Capecitabine has stopped working. Increased activity in spine etc, though still no spread to organs. My options are currently Piqray/Faslodex - though the UK literature explicitly says it is not recommended for people with ONJ, which I have - or everolimus/exemastane, and hanging on with one of these combinations until Truqap is approved here, which will likely be in January. Very disheartened, scared, and, frankly, a little drunk. Came home via friends who soothed me with sushi and wine in their garden… Was so hoping for longer than 7 months stability, especially as in the middle of radical downsizing and not really coping with empty nest.
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Regarding radiation, I had two sites done in 2022. Felt appalling in the immediate aftermath but absolutely no pain since, so good luck @divinemrsm
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Just got my labs back. A number (6) of my CBCs are low. Wonder if that is from the SRBT treatments. My treatments ended three weeks ago.
Hoping someone here might have had some experience with this and if so, how long did it take for them to go back to normal.
Thanks.
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@divinemrsm goodluck with rads!
I completed 10 sessions for my lower thoracic + lumbar in 12/2022. I was down for 17 days due to severe gastritis and GERD. Bounced back and regained lost weight thereafter.
I also completed 10 sessions for upper thoracic + cervical spine this past May. Severe painful swallowing and esophagitis were my side effects. Resolved after 2.5 weeks.
They asked me to undress and put on lab gown for my sessions, lay down supine on the table. Staff were extremely helpful in making sure I was safe and comfortable. They offered bolster for under the knees, soft pad for the back, and extra blankets on cold days.
I wish you a smooth treatment and mild side effects, if any.
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emelia, I’m sorry to hear that you need to move on from the Xeloda. Your friends sound very caring to help you in the tough times. I hope the next treatment is effective for you! Btw, empty nest can be challenging, but eventually I think you adjust to it.
going2beatthis, I don’t remember if my experience with radiation affected my blood work, but a quick google seems to indicate that it’s possible. I went for the mapping part yesterday for the radiation coming up, and the nurse was explaining that radiation continues working in the body for several months, so I think it can surely affect blood work three weeks out.
vajra, thanks for the encouragement! As mentioned above, I had the mapping part yesterday for rads where they put me in the ct scanner and the mri and made markings on my body. My shirt/bra needed removed and I was given a gown to put on, but my jersey capri pants only needed lowered below the belly button. I’m not super modest; I guess I just like to know what to expect. I feel fortunate because any tech I’ve ever had thru the scanning process has always treated me with care and respect.3 -
divine,
My bone met was on my upper femur , very close to my groin area. Let’s just say it’s a good thing that I am not modest in medical situation 🤣. The techs were very discreet and professional 😊
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Thanks Divine. Got the boychik back for the afternoon today!
Exbrngrl, I too have abandoned modesty but still felt very vulnerable during the radiation to my shoulder as it involved exposing my half-done reconstruction on the same side. Burger bun with no nipple as covid bumped into the scheduled second stage of tidying me up and then - gestures airily across an alien landscape - all this…
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exbrnxgrl, I get your point about the location of the radiated met. Your ‘not modest in a medical situation’ is probably my approach too.
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I had the mapping done last Tuesday for the spine radiation. It takes 7-10 days for them to make a plan for the rads, then they’ll call to schedule me. Last week I started having bad back pain. I never had this before and figure it’s due to the mets. Not sure what to do. It’s in the middle of my back, often on the right, sometimes on the left. I sometimes get a sharp pain when I breathe deep. 8 hour tylenol used to help but now it’s sore all day long. The cancer center is an hour away. I hesitate going to the local express care or ER because I feel like it would open up a can of worms. My current plan is to ride it out till I get the rads, hoping it eases the pain. Not sure I can make it. Should I call the onc? Not sure what they could do at this point.
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Divine, definitely call your MO and let them know what's going on - I know that for me, tylenol did nothing for my bone pain, but tramadol (which is the mildest opiate pain med) worked very well, at the lowest dose. And of course if your MO thinks something else might be going on, they can steer you right!
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@divinemrsm , yes, please call your doctor. You have a good track record. No need to stop now.
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I concur! Tylenol is entry level pain relief. Sometimes you need to step it up a bit.
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Oh Divine. Yes call MO. My first thought was maybe a compression fracture. Duh. There are known mets. Absolutely should NOT have to wait for pain relief. One thing I was reassured about. Hmmmm.
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Exbrnxgrln are you still on a drug holiday? Or did you start something again? How longs it been? I think of you often.
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Thanks for asking! Yes, off all meds. It will be a year in November and then we’ll reevaluate. I have been able to put on some weight so semi-skeletal is no longer an adjective used to describe me. However, the joint pain is not much better and appears to be arthritis. Hope you’re well.
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Divine - If it were me, I would consider going to the local urgent care, before calling oncologist and maybe having to go that hour drive. Sometimes the urgent care will tell you to go to the ER anyway, or that they think the issue is beyond them, but I more often than not find it a good first start. I'm saying this as someone who used to panic over these things and go directly to the ER, only to learn it wasn't an ER level thing. Also, when I call the oncologist over things like this, they too usually suggest I go to the ER, and then again, I discover that it wasn't THAT serious. Just my 2 cents.
I'm really sorry you are going through this and that you get pain relief soon, whatever path you choose to find it!
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@divinemrsm, take care - pain it very wearing - mentally and physically. Perhaps it won't hurt to check with your local facility to get some meds that will address it. In your pocket with support.
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@divinemrsm sorry to hear your are experiencing significant back pain. i hope you get a hold of your MO or Rad Onc to discuss this new symptom.
your symptoms are very similar to what i experienced earlier this year. both MO and RO ordered MRI, which showed two pathologic fractures with vertebral stenoses, which explained the excruciating bone and nerve pain i felt.
the MO or RadOnc might not be able to do anything at this time, but a potential referral to a Palliative Care team could help find the right pain meds for you.
best of luck to your upcoming rads and i hope your pain gets managed and alleviated pretty soon.
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Ladies, thank you all for your suggestions on the back pain I’m dealing with. Yesterday morning I messaged the oncologist’s office; the NP got back to me later in the day and sent in a prescription to the pharmacy for pain. I think it’s for oxycontin.
This morning, I messaged the radiologist office, asking where things were at regarding my treatment plan and mentioned I was having back pain. The nurse got back to me quickly and said they were about halfway done with the plan and hope to call me next week to schedule the rads. She said the radiologist is sending in a prescription for Decadron for the pain. So it looks like I’ll have two options for dealing with it. The pain is manageable thru the day and seems to increase towards evening.
I couldn’t bring myself to go to Express Care because I already spend an ungodly amount of time in dr/hospital offices. And tho my local medical establishment comes in handy for many things, sometimes dealing with them on more serious matters is like opening up a can of worms.I remain grateful for this forum and all the support everyone offers. It’s like having our own unofficial, unaccredited yet highly experienced tumor board!
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divine,
💗💗💗💗
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Divine - Just wishing you all the best! Hugs too.
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Me too. New pain is always a horrid shock.
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@divinemrsm Ha! We are, indeed, a Tumor Board!! I like that perspective. Take gentle care of yourself.
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Divine. So glad your doctors ordered pain meds for you. I hope they work.
Exbrngrl I agree even the arthritis pain is no fun. I'm sure mine is worse from the meds. But no I am not fine. I feel OK since I had a biopsy this morning. Looks like a recurrence to just behind the nipple. Ugh
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hi everyone. Just reading back. Is anyone else here taking Orserdu? I developed some pretty severe low back pain after starting it. I reported it to my doctor and she dropped me down to the next lowest dose of three 86 mg tablets once a day. I read the label wrong and for the past week I took one pill three times a day. This med is to be taken with food - high fat and protein. I have never eaten so much and so often. I just figured out my error this evening. I am hoping the back pan subsides. If not maybe rads are in my future. Anyone have experience with this med? I have the ESR1 mutation. This is my third line of treatment. I have been lucky not to have a lot of pain before this, except for the random broken rib! I was initially diagnosed 2b in 2011, and stage IV in 2021.. I would appreciate any experience anyone else has had with this med.
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@gigil I made it 9.5 months on Orserdu. I believe I heard others have pain on it as well, but I can’t remember the type of pain I had. Your tumor markers can rise on this drug for months before they fall, so don’t be surprised. I want to say the pain is your mets being attacked by these blue pills. Hopefully the pain subsides soon. There is an Orserdu Facebook group. Let me know if you want the link. It’s very helpful.
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