Bone Mets Thread
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Great conference today, free with live web streaming http://komenpugetsound.org/nwmbcc/
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Perky, thanks for sharing. Does appear to be an awesome agenda.
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Thanks you Sue. I'm working on taking a nap. Easy for me to say since I'm retired. I no longer feel guilty taking short rests I gave myself the Neulasta shots years ago. Not fun. I used to dread the bone pain but now I hear that Claritin helps.
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Hello forum family!
I was catching up on what I've missed, lots going on here!
So, question: My onc just started me on Zometa infusions-all I can say is the side effects have been so bad, I have had the "flu" for almost 2 weeks. I don't know that I want to continue on like this, No matter what meds I take, I can't eat, sleep, my vocal chords are wrecked. I get a new scan to see how everything has been working next week.
What were your experiences with Zometa? Did you keep going with it
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Dani zometa gets much easier! My first infusion had bad side effects, flu like symptoms and so tired. After that it has been totally fine with no SEs. I have heard others get some SEs with the second infusion, but then nothing. Make sure you drink loads of water when getting your infusion, it really does help. Also make sure it is not administered too fast, no quicker half hour seems good. Hope you feel better resl soon from your first infusion.
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Dani I had HORRIBLE side effects with my very first one, last year. Felt like I got hit by a damn MACK truck! And I was on the crapper for days
(.I also had one of the weirder SEs, too. The entire left side of my face went totally numb. (It's rare, but it does happen...says so in the Zometa online literature.) I thought I was either having a bloody stroke or coming down with Bell's Palsy. It did eventually go away after a day. I was told by the onco nurses AFTER I went to chemo prep class, that we should drink as much water as we can the day b4, day of and day after. Also REALLY important: TAKE A BENADRYL one hour b4 the infusion. This will help with the SEs tremendously. Don't eat anything heavy day b4, day of, and day after either. Just plan on treating yourself like you have the flu for a few days.
I've been fine after the second one by following these tips. You have to be on either Xgeva or Zometa to help with your bones. It's a MUST.
Good luck!
L
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Dani fd- The first dose was the worst with a fever, flu like symptoms for a week. I now take a Tylenol before each infusion.m I take Zyrtec everyday for allergies, so maybe that helps also. I still feel awful for a few days after each infusion and dread it. I will say that 50sgirl said to infuse it over 30 minutes or more (they like to infuse it over 15 minutes) and drink tons of fluid before and after. My last one was much better doing that, but, I also got 3.5 mg instead of 4 mg because my kidney function is not normal anymore, so that may be why it was better.
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Dani, I am two years dx. Have had zometa every three months. My infusion was on Friday. I am up at 2:00 a.m.,because of se's. It makes me sick for about four days. I drink a ton before,during,after. Just depends on our chemistry.
It is essential for bone mets!!!! Just keep plugging along. Take care!!!!
Love Chelle.
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If you are on FB, please share this video, created by fellow mbc-er, Laura Odom. This is the sort of mbc education piece that needs to go viral! Let's help Laura make it happen!
https://www.facebook.com/TheRiseUpCampaignbyLauraO...
(Editing to add: I can't seem to link just the video. The above link is to her FB page for this campaign, and the video is the 2nd or 3rd thing down.)
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Deanna,I posted this video right away on my Facebook account. It is a very moving video! Dh and I watched it together and cried! I hope that the world starts to listen! Everyone is aware, now let's move on to curing MBC.
Love to all Chelle.
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Deanna, what a powerful video! I will share it on my Facebook page as well. It brought me to tears.
Hugs to all, Annie
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I don't have FB, is there any other way to watch it.
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Mom, if you click on Deanna's link and scroll down you can view the video, it's about the third one down on that page.
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Annie, if she's not on FB, it may not come up for her. Let me know if you can see it, MomATT. If you can't, I'll figure out some other way to link it for you.
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Thank you Annie and Deanna thanks for posting this. Dani has said from the get go how she hates October and the pink ribbon thing. Beautiful video, real life with real people.
I am checking in many times at the newcomers thread, and it's still shocks me the ignorance of the so called doctors, still not always recommending Mamos even when there are valid reasons to do so, or US after a Mamo with dense breasts which e/o knows is hard to detect a lurking lesion. And misinformation abound.
How about the basics, someone with a Hx of Cancer and has physical complaints, check for Mets. Simple. Do think of zebras. Medical students, I read in a book, are taught when they hear hoofs they should think of horses and NOT zebras, maybe not. It could be more than arthritis, or a pulled muscle.
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Just shared to FB
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Shared to Facebook!!
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Shared to Facebook
Bab
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Babs and MomATT, I thought of you both when I saw this information today in a FB discussion about immunotherapy. Babs, I think you're being treated at MSK, so perhaps you're aware of this new study, but I figured I'd share it here just in case you're not. And MomATT, I can't recall if you and Dani are linked into MSK or not. The following is from a scientist friend who is in the loop...
"Sharing this information about a new immunotherapy trial (study) for anyone who might be interested. "The Thoracic Surgery Service at Memorial Sloan Kettering Cancer Center (MSK) is excited to announce the opening of a new clinical trial that uses an adoptive T cell therapy approach to treat mesothelioma and metastatic lung and breast cancers. For more information about this study and to inquire about eligibility, please contact Dr. Prasad Adusumilli at 212-639-8093."
That's all I know, except that they are actively recruiting now, and the woman who gave me this information says the clinical trial nurse is a delight.
Feel free to pass the info' along to anyone looking for this sort of trial/study. Deanna
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Thank you ladies for all the advise, I was completely devestated from feeling like this was just how it was going to be every 3 weeks until January. I don’t know how often I’m going to get the infusions. I get a new scan this Friday to see how chemo is changing things. Fingers crossed we see shrinkage! I’m finally feeling like back to ‘normal’ last few days. I felt flu like for over a week. My blood tests also said I was neutropenic(?) still learning new words everyday. Finally found the right meds to keep nausea at bay, which has been much worse this time around. I can eat real food!! At last!! Thanks to Prochlorperazine and Lorazepam.
Thank you from all of my heart too to bottom!!
Xox Ladies, Strength in numbers!!
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hi friends, just back from a few days showing my son New York City. Wanted to share a photo of my favorite Brooklyn Bridge. I live do in NY from 1996 to 2004. Boy has it changed! Felt good to do all the walking
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Jen your son is so handsome you both look great😊. Have never been to New York but I found the same thing when I visited Berlin a few years back way different than when I was twenty.
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Jen he looks exactly like you!! Love it!! What a trip it must have been.
Deanna you are such a sweetie. Yes, she's at MSK. And this sounds gr8! at this time for!! She was just discussing w me how we need to get to immunotherapies. Don't think this trial is doing much for her. She has pain in all the wrong places. Well she's right now at the ER, i was called for emergency baby sittiing. Blood in the urine, clots... She hasn't seen a doc yet. I just sent a message in the portal to the docs office. When we called docs # and it says press 0 for emergency, well anyway, the doc on call didn't call back, receptionist said he's behind calls. I wrote on the portal, that when a patient is bleeding and calls the emergency # a doc should call back, and if he can't he should have someone call back. She headed there not waiting for their call back, that's for sure. Maybe it's a kidney stone, who knows...I hope it's not more tumors...I wrote it's incompetent of them. So if this is messed up she might start to get to another wagon earlier than expected. In the trials, they don't allow any other care, so if she will need something she's off it. I guess it will be along night.
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Jen what a wonderful picture. You look sooo happy. Next time you're in ny let me know so I can make suggestions of places to go, where to eat etc
Bab
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Jen, great picture! Your son is adorable! So glad you had a great time together!
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Jennifer, What a beautiful and touching picture. I can feel the love.
Hugs and prayers, Lynne
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Mymom, I don't have experience with the treatments your mother is having, but I do want to say that the hormonals can often lead to insta-arthritis. I've had knee pain since about six months in, which I have reported, and I still never get scanned below the pelvis. I don't think they are being careless...I just think it's that rare. My knee pain goes away with a medication vacation, by the way.
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Xgeva/Zometa - I don't think they are essential. Because of my MRONJ, I basically told my oncologists that I would only go back on it if I needed it, i.e. I had new lesions. In the last two years I've only had about 4 shots, and none at all in the last year (I think...I didn't make notes). I take Vitamin K2 MV-4 with D3 and my calcium supplement, and everything seems okay. I learned about all that on websites for osteoporosis that suggest alternatives to biphosophate type treatments. Mind you, I think the hormonals are keeping everything at bay for now, and if there isn't active disease, then you don't get bone lesions and therefore don't need the meds to interfere with the remodelling cycle. Right? That's my theory, anyway, but I'm just a patient, not a medical professional, and YMMV.
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Milaandra- Congratulations!!! Three years post-MBC diagnosis and you are basically just taking tamoxifen?! Yeah, I think ALL of our mileages will vary, compared to that!! that's a lot of fun miles you've gotten out of that treatment.... Wonderful, and a good reminder that the drugs are powerful, its just how accurately do we know what the best drug is to take for the state of our cancer cells. Hopefully immunotherapy gets around that, if they find the best combination it won't matter, immune system will take them out.
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Jen- darling picture and wonderful memory to make!
Milaandra- Zometa does boost immunity as well as strengthen bone that is damaged. It downregulates Tregs. I don's know about xgeva- haven't taken or researched that drug.
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