Bone Mets Thread
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Thank you so much everyone! Glad to know this current nausea is not connected to the pleural effusion. My nephew had Covid and he gets nauseous and my sister said the Covid booster made her nauseous. So the after effects of Covid is the problem most likely. I have been off Ibrance and faslodex since December so I’m thinking why in the world do I feel so bad. I’ve definitely squandered this med vacation! Oh well.
Feeling better at the moment. Thank you for the well-wishes!
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Has anyone else had this happen? A knot swells up on a bone or joint. It starts out very tender. Then it starts to shrink and becomes so small if you didn't know where to look it would be hard to find. This usually happens in a matter of days. Then almost gone and no pain at all. Per last two scans I have many bones mets and I didn't feel or detect them before the scans. I don't know if these bumps have occurred at met sites. I see the MO this week but she doesn't seem to have much experience. Tried to research but can't seem to find anything that's describes this experience. Thanks
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Hi GoKale. Actually, I had quite a bit of nausea with my pleural effusion and lost quite a bit of weight as a result of that and the fact that my body was having to work so much harder to get oxygen. I found ginger gravol lozenges were my friend at that time. Hope you can get it under control
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Cocogal…
I'm not sure if this is the same thing you're experiencing but I have these little lumps that form in a couple of spots around my rib cage. I first noticed one in the lower back rib cage. Then in the front bottom right of my lower rib, then one on the left side. To me they feel movable and maybe on a tendon or cartilage, not the bone. I think they are there all the time but I've tried to stop touching them because continuous touching seems to irritate them and make them much more tender. Also, I am on Abraxane and they seem to flare right after treatment. I showed/told my MO and he wasn't concerned. I'm also due for CT scan on 2/11 so I guess that will tell if it's anything. Hopefully it's just some sort of inflammation from the Abraxane.
Jackie
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Jackie,
Mine are on bone. The two that swelled in a joint were actually on a bone in the joint. When the swelling receded I could feel it. When they first appear they are very firm but not hard. They are very tender when they start and swell up and then as the swelling goes down there is no pain at all. It feels as though there is a tiny little bit of additional bone left behind. The whole cycle is done days. They pop up tender then get bigger and then start subsiding. I developed many bone mets this last year and I never felt any of them. To date I am blessed with no pain from them that i can attribute to them.
It would be wonderful if these lumps are my bone mets responding to treatment. I am not due to be scanned, CT, until March or April. From what I understand bone Mets can be hard to interpret on scans.
Wishing you the best with your upcoming scan.
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Hi Cocogal…mine don't seem to be on the bone but I guess they could be. However it really seems it's more like cartilage or tendon or even nerve.
Thanks for the well wishes. I appreciate it. Best wishes for you as well.
Jackie
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Cocogal - I hope you find answers to the unusual knots, and I hope it’s nothing serious. As for scans showing bone Mets, some scans work better for showing Mets, and I think everyone is different. PET scans and bone scans work better for me than CT scans, but CT scans are good for making sure organs look good. So my doc mixes it up so every 3 months it’s a different type scan.
Sadie servant - thank you for posting about your experience with pleural effusion. I am really hoping the thorencentesis tomorrow gives me some relief and Xeloda starting on Tuesday will start taking care of the pleural effusion for good. Also hoping Xeloda is effective and tolerable for a long long time.
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I know I have had a bone biopsy before to my spine and I'm pretty sure right femoral neck area. I was wondering if any of you have ever had a biopsy done of a tibia? I have an area showing up on my bone scan and there is some debate whether or not it's a met or an area of osteonecrosis so they want to biopsy it. I am so hoping that there is some kind of sedation for this and I just can't remember, thank you chemo brain! I'm pretty sure I had conscious sedation with my last biopsy but this seems like a really sensitive area. Any info or experiences you have would be appreciated. Thanks.
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I didn't have the tibia, but my hip biopsy was done under sedation.
Best wishes to you.
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i had twilight sleep for my bone biopsy. Not all the way knocked out but couldn’t remember much or feel very much
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emac, I can't imagine that they would do a bone biopsy without sedation. If they try, call us, and we'll all show up!
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Lol, thank you Sunshine99 and Olma61. I am frustrated that I can't remember my last one but at the same time, I can't imagine they would do that without some kind of sedation. I might just come up off the table at them without it!
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emac877, I wish you good results on your tibia biopsy. I had a T11 biopsy without sedation. They gave me a local anesthetic but I was completely awake for the procedure. It was not painful, but I had a back muscle cramp/spasm from the procedure that hurt for months. Maybe if they had sedated me, I could have avoided that?
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cyathea, speaking of back/spasms did you take anything that helped them? I am in the middle of battling them myself (mid lower left back) and I am not sure what is causing it but i'd love some relief from them. Any pointers?
thank you
tigre
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Emac877 - you will definitely get some kind of sedation. I had just a relaxing drug and a topical drug for my biopsy of the sacrum, and it was all I needed. When i got home I slept for a couple of hours.
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El_Tigre, I tried Ibuprofen first. That didn’t help much, but it did help a little. I also tried acupuncture because I was trying to rehab a frozen shoulder at the time. That helped but it didn’t last more than a few days after a treatment and it was too much of a time commitment. Eventually, my physical medicine doctor prescribed a very low dose of Baclofen to help me sleep better with my hot flashes. When I woke up the morning after the first dose, I was surprised that I had NO PAIN. It had been ages since I woke up without pain; what a relief! Baclofen is a muscle relaxer and it helped me sleep, but it can cause seizures if not used properly. Maybe your doctor can suggest a drug that would work best for your situation
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The best thing about Elascestrant? It is the 1st SERD which can be taken by mouth. I have scar tissue due to many Faslodex/fulvestrant injections over the past 3 years so an effective oral agent would keep that situation from getting worse. Besides, I don't like needles. Even the trial name EMERALD is auspicious because it's quite a gem!
In other news, I require a tooth extraction because of decay under a crown. It's worrisome since I've been getting Zometa IV since 2018. With my history of extensive dental work, Xgeva would have been a better choice since denosumab does not remain in bone for decades.
The osteonecrosis risk with bisphosphonates is a big issue. At least the rotten area (also seen on a recent PET scan) is in my upper jaw, not the mandible. I had bridges to fill gaps from genetically missing teeth until implants were placed but that option is now off the table…
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vlnrph - I have been on Faslodex for 2 years. I definitely have the lumps from previous injections and I guess I don't know if they will go away in time or if they will be scar tissue but I have had some debilitating side effects from the shots and am still trying to come back from some of it. I wonder if when Elascestrant is is available if they will move us over to that drug or if Faslodex will have to fail us first or if the injection site risks will make have us getting switched over. Also, will Elascestrant be so expensive that they will want to leave us on something else?
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cowgal - I wonder about insurance coverage of Fulvestrant vs Elascestrant. Since Elascestrant is a pill, will it cost more due to drug co-pay
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I imagine the price of any oral SERD is going be high. For people with private insurance through an employer, pharmaceutical manufacturers often provide rebates to bring the cost down especially when trying to get “buy in" from prescribers. Also expect to see expensive TV ads.
Medicare is not allowed at present to negotiate with drug makers, so those with Part D plans will pay more, hopefully not too much. Congress could act to change this but the industry is in opposition and it gives lobbyists $$ for 'donations' to legislators…
We may see prior authorization required or other hoops to jump through like showing financial need, etc. Sample programs are restricted by some institutions however if you have the energy to pursue access to these medications, you might get lucky!
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My doc suggested taking Alleve for pain because it lasts 12 hours and then i wouldn't be taking so much. Before that I was taking many ibuprofren.
I hope that at some point I can try Elascestrant. It may be available at the end of 2022. It's supposed to work better than faslodex.
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cyathea, thank you I was taking Ibuprofen but my ONC said to switch to Tylenol which I was not thrilled about. I felt no relief so we had me start Ibuprofen with codeine and then there was some. Now I am on low dose Dilaudid but that just helps 50%. We are trying to get me by until the scans, which she just put the orders in for, getting a CT, Bone and xray to figure out if it's progression or a flare up or something else. It is SO annoying but I hope it is solved soon.
My onc also switched me from Anastrazole to Fulvestrant incase my AI's were not working for me anymore. I was on Letrozole then Tamoxifen back when my cancer returned and she felt that Anastrozole was too close to letrozole to take that chance of failure again.
Baclofen sounds like it may be a good solution.
thank you I am also hoping Zometa that I have my first on Wednesday will help as well.
Fun Times and Happy Valentine's Day!!
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just letting everyone that replied to my question what doctor said
My question was why are my levels I think tumor markers going down steady decline but CT shows definite progression
She said it may be something called a flare. So from what I understand if it’s a flare then I will stop progressing and keep taking pills. If not flare I recheck in April and start different treatment
Anyone. Else bad a flare ?
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Beth - I am glad you received an answer. It sounds like a good plan, but I have never had a flare.
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no, but I am trying to get in for scans and my onc suspects a flare.
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hey el Tigre would love to know what your doctor says if you don’t mind sharing
I have never heard of it before now hoping you and I are going in good direction
Good luck with scans
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Hi Beth, I've heard of tumor flares but, in most cases, I have heard people describe a flare of pain/symptoms rather than showing progression. But haven't had this myself (although I suspect an increase in pain a couple of weeks ago was due to a flare) so can't say for sure. Let's hope they are right!
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Yeah, I don't think flare is a good word to describe my understanding. after radiation, my tumor looked pretty bad. You expect it to look better on the bone scan, but it looks inflamed or something. Whatever it is, it's common. My doctor couldn't say there was improvement but no way was he ready to switch drugs right away. But 3 months later he declared it stable and stable ever since. But I didn't catch if either of you are referring to reaction to radiation or just drugs.
Gailmary
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Im holding another week on this L4 radiation as they don't have all the info from prior team who radiated my sacrum or, rather, they did hit part of L5 in that session and the demarcation line isnt clear enough for the current RO to have a straightforward view to an approach and she wants to chat to the MO again about drug change reasoning. They may go to Cyberknife pending insurance approval.
That being said, I still did mapping yesterday and they do a full spine scan in the CT (no contrast, obv) as standard procedure. My question is if anyone has had an instance where a spine CT/other scan didn't show progression when an MRI did? I did take a sudden deep breath in the MRI when it was down in the lumbar region and am starting to wonder if this is a false read.
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SondraF, my spine from skull to femurs is full of cancer. It shows on MRI and not on PET or CT. I do have lobular, though, so that’s why. It can grow in sheets instead of lumps.
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