Bone Mets Thread
Comments
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BevJen: I'm glad to here the spine board came up with a plan. Hope you receive relief soon.
Nicole: My Alk phos does not correlate with my bone met. In 2010 (no heath issues) my Alk phos was 65, dx with bone met in 2019 Alk phos was 68, and currently 45. Initially I had tumor makers and they were unreliable as well. So I rely on how I'm feeling, which appears to be accurate for me. Hopefully you receive a plan to address your bone met.
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Thanks for the responses about the Alk Phos...now if thats the case then I am worried I am going into liver failure...I mean 359 is HIGH.... and I still have pain from the Y90 from 4 months ago......
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NicoleRod, I hope you find out quickly. That’s got to be scary.
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Nicole
I have bone Mets and liver Mets and today my ank phos was 80. But it looks like it usually stays in that range so probably not a good indicator for me.
Julie
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NicoleRod, my Alk P'Tase behaved as yours did. My MO never specified if it was due to bone or liver lesions, but I think it was bone because my liver lesions are very small, whereas my bone mets are extensive. My Alk P'Tase got into the 390s at its worst. When I started Gemcitabine/Carboplatin it dropped by about 30% right away. Now it is hanging out around 130, which is still high, but not as high as before. I hope you find some answers - it's scary when things go way off like that.
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Thanks Buttons...ya know I wrote my post wrong...what I meant to say was my MO doesn't feel the rise is from liver mets as my liver seems to be quiet...since the scan in Jan and Feb both showed success of the Y90 and the tumors to all be dead...so she felt it was more likely from progression of bone mets...but the way I wrote it made it sound like high ALK PHOS is only from bone mets...that wasn't how she said it.
Hopefully the Afinitor will work and it will lower...on a side note just to be safe I stopped the Milk Thistle and the Melatonin.
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I’m posting a screenshot of my Alk/Phos numbers from MyChart. I hadn't noticed until now how mine jumped during the time I was on Verzenio, from Sept 2019 to Feb 2020. Verzenio did nothing for the bone mets.
The Alk/Phos started lowering just being off Verzenio but before I began the Xeloda.
I stopped Verzenio by Feb 12. Bloodwork shows the Alk/Phos number had already dropped between Feb 28 to March 12, but I didn’t start Xeloda until March 16. I had a blood transfusion on Feb 24 because of low red blood count/anemia caused by the Verzenio. But could one potentially draw the conclusion that it was some interaction with Verzenio causing the Alk/Phos flair up and not necessarily increased disease?
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Divine...hrmmmm... I did 10 days of Verzenio....but I have been off it now for about 10 days...hrmmmm I wonder if thats what did it?????
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Nicole, it does make you wonder.
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Yes indeed Divine...
Well just got a call PET scan moved up...Monday at 1130am.... hopefully results Tuesday... Hold me in your prayers ladies for minimal pain during scan and not too much progression...
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Nicole Rod keeping you in my prayers
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Nicole...also keeping you in my prayers.
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Pocket duty Nicole.
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Thanks Anne and Jackie
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Nicole,
I'm right there with you. Since my back pain has persisted (though much lessened except for my right hip, which the rheumatologist has identified as bursitis), my MO wants me to come to their urgent care facility for cancer patients for part of the day on Monday. I will for sure be having a CT scan, using morphine so that I have no pain. I am trying to get them to also order my check up MRI of the abdomen on the same day if they can, to give me the benefit of the morphine In case I still have any pain by then. She also wants to put me on a drip to make sure that I am not under hydrated. Based upon that, she wants me to change out from the keytruda. I am so very, very upset. All of this was conveyed to me in an email. I've not even been on keytruda for 2 months at this point. It takes some time to work, and I think I have this other thing going on that was coincidental yet no one wanted to focus on it and that's why the back added up. I can't get her to see this.
So I guess that's the plan for Monday. Will take any pockets or prayers.
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Pockets and prayers for you also BevJen.
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BevJen, I'm in your pocket on Monday and you're in my prayers.
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BevJen, pocket duty. I’m sorry you may have to go on a different treatment
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Sending prayers to you both for best possible outcomes-
-Lynn
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Is anyone on this thread using a generic form of xeloda? I researched last evening, and it appears that Teva has a generic that is distributed in the US. I'm on Medicare, so I'm wondering if anyone using the generic could tell me the pricing. I already know the pricing for the original drug under the Part D plan.
Thanks.
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Question. You all know I’ve been having the left rib pain. Yesterday I started feeling really weird. My eyes feel weird and I have a pressure, not so much a headache in my head. I feel very off kilter. I hate going to the emergency room. I don’t want to overreact. This really sucks because I don’t want to be silly about it. Opinions about what you’d do. It’s making me very nauseous. I haven’t had this before.
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Bev, I take capcetabin, the generic form of Xeloda. I am on Medicare and since I’m under age 65, I have a Medicare Advantage plan, which is somewhat different than the Medigap coverage you can get when you're over 65 (by Ohio rules). I take a daily dose 2000 mg of capcetabine, 7 days on, 7 off. On the Advantage plan, I have a co-pay of $245 for each monthly supply. I started out taking 3000 mg about a year ago and the co-pay for the higher dose was $365. Due to severe hand and foot syndrome, the dosage was lowered. It’s a very tolerable drug when you get the right dose.
KBL, I don’t think going to the ER is overreacting. Just because you’re not going to be rushed in there on a gurney like some high-drama tv show doesn’t mean your concerns aren’t valid. I cannot say what it is you’re experiencing but I wouldn’t minimize it. Please consider seeking medical help if your symptoms continue for much longer. It’s a form of self-care and you are worth it.
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Thank you so much, Divine. I will definitely seek help if it doesn't clear. I'm extremely nauseous. It's so hard sitting here trying to deduce what it could be.
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BevJen- Change in treatment so soon? IV for hydration? I thought they thought your back pain was from the degenerative issues per the rheumy. Did I miss something in your posts? I can see a CT maybe, to get another look. Pocket duty for Monday.
KBL- Get it checked out. Better safe than sorry.
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Bevjen, my capecitabine is 100% covered by my Medicare advantage plan but the original cost before the supplemental insurance was $3,000.
If you want to compare costs on a larger scale, you might try asking on the “all about Xeloda” thread.
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Bev..thanks I am with you too Monday. Did you cross post about the generic of Xeloda in the Xeloda thread? You might get more responses there? I did the generic Capcitabene> spelling...lol unfortunately it did NOTHING for my cancer....(I think you know that though).
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KBL...go get checked out or at least call your doctor.
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Agreed!!!
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in your pocket and my oray
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I’m here at the ER. They are so great here. I have a blood clotting disorder. They are going to run tests to make sure it’s not a blood clot. I forgot Ibrance can cause blood clots. I’m already higher risk. My kidney numbers are below normal. Thank you for telling me to come. You helped me make the decision.
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