Bone Mets Thread
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KBL hoping everything gets taken care of. Just prayed for you.
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KBL...so glad you went! Praying for you!
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Prayers, KBL. So glad you went in - you did the right thing.
I had blood clots a few weeks ago, and one DVT. It was scary. I'm on blood thinners now, and feeling better.
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KBL,
Thinking good thoughts. If you need to get some sleep and want to bore yourself to death, go ahead and google to fine some articles to read -- I'd start with Ibrance and blood clots, but don't just read the manufacturer's stuff. Good luck.
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Waiting to check out. I have a partial answer. The rib pain has probably been from my kidneys. CT shows bilateral hydronephrosis of unknown origin. I told my doc last month that I know CT doesn’t show cancer but in my heart, I know it’s spreading. I think it’s spread to my reteoperitoneum. That’s just my guess. I have to see a urologist very soon.
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Oh KBL I hope you are wrong about it spreading. I am glad you some answers.
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Thank you, NicoleRod. There is nothing worse than kowing something is wrong but people don’t believe you.
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Good decision KBL. Hopefully your fears won’t be realised. I wonder how many of us have known and flagged problems and feel they’re not being listened to. That happened to me with a pleural effusion in Jan which showed up as small on an x-ray, but very swiftly filled up my lung. Flagged twice I was struggling breathing and only when I turned up unable to walk the length of the corridor without gasping did they send me for another scan and I ended up in hospital for 5 days. So grateful to the CT tech & respiratory nurse who picked me up very quickly and pulled all sorts of strings to get me admitted as an urgent.
I did quite forcefully tell my cancer NP that I had been left far too long, hadn’t been listened to and spent much longer in hospital and recovering from this than was necessary. Also that if I have any further breathing issues I’ll go direct to the respiratory team and not through them. They got the message....sometimes you have to be a bit more direct I think. They do their best but they see SO many patients sometimes you fall through the cracks.
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Thank you, Karen and cyathea. I’m sorry you went through that, Karen and that you have pain, cyathea. Not knowing why is the worst.
I feel like I’ve directed my care more than the physicians. It is a little ridiculous, but they have so many patients.
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KBL, glad to hear you took action and got yourself to the ER. You were tuned in to your body enough to know something wasn't right and wasn't going to self-correct, so you got yourself medical attention. It also sounds like the er employees were attentive, always a plus. I don't know how things will continue to unfold for you, but I hope for the best.
I feel like I also have directed my care more than the doctors. I rely on their expertise yet must always be on my toes to make sure things don't fall through the cracks.
A side story: at the end of March I went in for a ct/bone scan at the hospital. The 2 ct techs commented that the the deep pink sweater I was wearing was a pretty color. Making conversation, I thanked them and said, “I don't know if you've ever had to wait in a big room with a lot of other people for medical tests, but I always wear a bright color so I stand out in the crowd. There's less of a chance of being forgotten or overlooked. I try to give myself that extra edge."
Well, you'd have thought I'd just deciphered some vastly important secret code for them, they were so impressed by my simple strategy, like a light bulb went off in their heads. And they said that, in fact, they often reference articles of clothing to keep tabs on patients with each other, like 'the man with the jacket' or the 'woman in the striped shirt'.
The point of my story is that I will even advocate for myself in a small but effective non-verbal way.
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KBL, I’m sorry you’re having to deal with this but it sounds like you may have a partial answer to your pain. Wishing for good news when you see a urologist.
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Divine, I agree, advocating for ourself is very important. I love your story. I never thought of that before. Thank you for the idea.
Ilowen, thank you. The pain is so great, but I refuse to take anything right now. I’m not masking it and making it seem better when it’s not. It would be different if it was an antibiotic something that would fix it.
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KBL. So sorry this took an er trip but I'm also glad you went and may be on a path to treating what is causing the pain. I also pray it's not a progression...lots of things can go wrong with kidneys. And very much feeling the "have to direct the diagnosis myself"...kudos for taking action.
Prayers for all of you going in for scans.
I finished radiation Friday, seem finally to have gotten nausea/vomiting under control with meds and new eating pattern (several small meals or snacks). But I'm supposed to get a first infusion of Zometa tomorrow which is scary as I have a bunch of meetings lined up for Tuesday (on Zoom, but still, I'm supposed to be there able to think). At least I also have a brief meeting with onc where I can ask some further questions about the treatment rather rapidly coming together (started Letrozole last week, will start Ibrance next). I feel like it's a lot to throw at my body all at once, but the diagnosis was so slow, I guess it makes sense
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Thank you, prairiesea. I am in so much pain, I hope the urologist can see me soon because I've been dealing with it for weeks.
Good luck with Zometa and other treatments that you're starting. Be kind to yourself. That's the most important thing.
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KBL i am so sorry you are in such pain I understand completely! Just prayed for you!
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NicoleRod, you.are so sweet to pray for me when you're going through so much yourself. I am praying for you as well. Thank you.
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Prairiesea, I’m so happy to hear that you have gotten the nausea/vomiting under control. I too had to take meds and modify my eating habits when I had radiation. While your body adjusts to all the new medications you are starting, take time for yourself. Just lay down, put your feet up, and let things slide if you need to. Wishing you well.
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I don’t want to take over this thread with my issue, but I wanted to let you know that doc said I need a cystoscopy this week to look at my bladder. He is concerned it’s spread. I do have a post I made about the hydronephrosis, so I will post updates there.
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Wow KBL. I am so sorry to hear this.
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Thank you, Candy. I appreciate everyone here so much.
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KBL, I'm so sorry.
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KBL do not ever worry about taking over the thread we are here and WANT TO HEAR YOU!!!! I know I do. Only all of us know what you are going through and the fear and stress and worry. It's so overwhelming at times. ((((((((HUGE HUGS))))))))
PS: todays PET SCAN was the easiest I have ever had thanks to 3 Valum.. (2mg each) lol
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OK GOT RESULTS.
Spine did have progression...T3, C7 and Sacrum...more uptake and a little bit bigger. The liver...1 lesion (I believe its the one we were suppose to go back in for with Y90 but then it looked as though theY90 got it) well that looks to have a little uptake in outter rim ?> but we need MRI to really know more....IF it is the lesion I think...then my IR had already told me I shouldn't have the same problems I had bc its not near the colon wall.
I will probably have MRI of liver within next 2 weeks..the spine will take longer bc I need sedation so maybe 4 weeks...
I am also going to be switching from Affinitor / Exe...to Afinitor/ Faslodex.
Praise the Father for being off all treatment for 4 months and thats the only progression I WILL TAKE IT and BE GRATEFUL! Thank you for all your prayers and being with me.
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NicoleRod, thank you so much. I feel the hugs. They are so important to me.
I’m so glad the PET was easy. I’m sorry you had some progression, but four months off treatment had to be scary. On to the MRIs. All the tests ... Ugh.
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Nicole- sounds pretty good overall. And pretty good for being off all treatment for 4 months too. Hopefully Afinitor/Faslodex will keep things in check.
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Sounds encouraging, Nicole. Good luck!
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KBL, so sorry about your news and will be praying for more hopeful news from coming tests.
Ilowen....thanks for the good advice. I'll try!
NicoleRed....I'm glad for you that your results are a relief.
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Thank you, prairiesea.
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Cross posting with bone mets:
So, I came to the hospital yesterday to the Urgent Care for cancer patients. My center has this open only by appointment only. They wanted me to come in for a CT for which I needed medication, as well as a ton of fluid by IV, and also some IV diaulide (sp). The NP who was in charge of that unit yesterday could not believe the amount of pain that I was in and said -- we're going to get you admitted so that they deal with this back pain -- ridiculous. A woman of her words -- I was admitted last evening. But we still don't have a plan and my brain is fried.
First, they straightened out my calcium high numbers and my creatinine and eGFR stuff by keeping me on fluids all day. Of course, then my magnesium went up so overnight I had some of that in my fluids. So far, so good on that. The CT showed that I have 2 new lesions in my liver --no info about that that I can remember except that one is 1.2 cm and the other is right about 2 cm. These are new. But as far as I know, I can use some local liver treatments with them -- trying to verify.
My back pain has largely subsided but for the middle of my lumbar back (slight pain) and super bad pain where in my right butt. They can't figure out where that is coming from. So for now, I continue on IV pain drugs controlled by me with a button that I can push every 10 minutes.
And now they are pushing Senna and Miralax for constipation -- caused by the fact that I have not been able to really get up for 5 days or so and I can't poo in the bed pan.
So there's my sad story. Too many docs, no one figuring it out, just one big mess. And here I sit in the hospital. Will update when I can.
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