Bone Mets Thread
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so glad I asked, yes I have typed some really meaningful or funny or deep stuff only to have that happen and have to back up and start over Lol so y’all have just gotten the main point, maybe now I can really get involved! :0
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Yes I have had the slow down problem also. Glad to see how to get around that. Thanks Sarah0
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Hi Chef, I am on Zometa also, for about 2 years, with a couple of breaks. A couple of infusions ago, the nurse administering it told me to take calcium, which I had not been doing, as it helps with the pain issue from Zometa. I kind of scoffed at that silently but I bought some and low and behold, it did help! Not sure if it will help everyone as we all respond differently to the same drugs but something to try and it sure can't hurt!
Cindy
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wow good info! Thanks! I am so amazed and grateful for the help from this wonderful group of humans:)
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chef, I had zometa as an injection straight into my port, no drip, took Claritin like prescribed everyday, helped with the ache, I only had flu symptoms the first time and then never again. They took me off it before my hip surgery and have not put me back on it, as to not interfere with proper bone healing. I had a dynamic hip screw the first time, hip was still bad and broke a second time, and now I have an entire prosthesis of hip ball socket and femur. Hip is feeling great since February, no more diseased met! Spine shoulders ribs and knee are different a story. My last scans came back with an increase in tumor and armpit lymph size, new met in liver. I’m tired as hell but keep on going! Not looking forward to new rounds.
Thanks for the helpful tips on the New medication, I think I’m going to wait until after my trip to Tillamook to start it. No more hot flashes till then!
Stay strong ladies!
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Dani fd - You go girl and enjoy your trip. Safe travels. Hugs!!
crissy
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Have not been on boards for awhile and didn't realize how much I had missed them. I have been on ibrance and letrozole for 33months and now have progression, a new spot on my left femur and t12 and l2 have returned after being gone for over 2 years.The pain isn't terrible mostly just sore like a deep bruise, will start on aromasin and afinitor on Tuesdayand I am feeling a bit anxious about the side effects, all suggestions greatly appreciated. Marilyn
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Hi Marilyn, I'm so sorry about your progression. I've been on A/A for 2 months. I've found side effects similar to Ibrance. When I first started I had terrible gas which has settled down. Using the Dexamethasone mouthwash as a regular part of the day has prevented mouth sores. I also put the Afinitor pill in a gel cap as recommended by the onc nurse to help prevent mouth sores. I've had some head sores and itchy skin. Keep up your hand washing protocols just like on Ibrance. The first few weeks the fatigue was tough but it got better.
I have my first scans next week and am hoping for the best.
All the. best,
Mary
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Marilyn, have you had Faslodex already? If not, might be worth asking your doctor to explain the choice of A/A over faslodex (with or without a CDK, if insurance would pay). Anecdotal evidence from these boards suggests afinitor is not as tolerable and it hasn't been shown to be better. It's possible that there is a good reason for it, and I'm not saying "don't trust your doctor", but it's always good to know more.
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Just got my ct scan back and seven areas in my bones lit up. Skull, spine, pelvic, and chest. The MO said the report is confusing because they cannot tell if they are active or healing. Has this ever happened to anyone? I was surprised as my tumor marker was 55 and the scan report said there was less cancer in my abdomen then the last scan. Can’t seem to get good news without some bad.
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I get that word problem as well. I have got a terrible cold (white blood cells low) it has so far knocked me flat for 5 full days with no end in sight. Any ideas apart from cold and flu tablets on helping get rid of it? I am so flat and diwn
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Z and I met up to hike at Sandia Mountain in Albuquerque New Mexico this morning! First time meeting one of the BCO gang in person. She is awesome! Thinking of her as she heads to Mayo this week for tests and treatment.0 -
Yay ladies, what fun!
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absolutely wonderful ladies. I am in awe that you were able to meet each other. What a special bond. Such beautiful ladies. I am so thrilled. Power on beauties. Much love ~M~
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So cool that you two were able to meet and spend some time together
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We REALLY need a like/ love button! So nice to see two sisters meeting up!!0
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Two gorg gals, and an inspiration to keep it moving!
Delvzy, I don't know of any magic bullet for a cold, just rest, liquids, and patience. If you're not seeing any improvement, contact your MO office. Hope you feel better quick.
Diana, what's your MO follow up plan? Mixed results are excruciating, as there is no clear path forward. Sending up prayers for clarity.
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Iwrite, I am still planning on being in the Springs in July. Looks like my dates will be the last few days of July and first few days of August. Would still love to meet with you if possible. I haven't forgotten. Chris
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love the pic looking great bco ladies. How cool you can meet up. Loving that you guys went hiking. I have never met anyone from bco in person.
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I’ve been fortunate to connect with a sister from here! We’ve become fast friends and text or talk almost every day. We’ve attended a couple of events that a local breast cancer organization has invited us to. It’s nice to have a friend who knows exactly what you’re going through!0
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Awesome picture of the two of you! Beaming smiles! Good luck to Z on tests and treatment at Mayo
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Patty - so good to see you postin. Hope you are finding some relief from your pain.
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that's so cool! That photo lit up my heart. I recalled how much fun I had meeting LaLady when she came to Manhattan a few months ago...it was so magical...since we are complete strangers to each other and yet we totally understand what we are going through, which none of our loved one's, no matter how loving or hard they may try, will never full get .... may you both experience long remissions if not a complete healing!
LaLady where are u? Are u back from England? XXXOOO
Miao
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Beautiful photo, Kathryn & Z
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Iwrite- Great photo!! Z has dimples!! (just like me) so glad cancer can't touch our smiles!!!
Adding to the discussion about Affinitor/Aromasin, the benefit in secondline is similar to taking Ibrance-Faslodex on average (without any knowledge of the reason for progression), but discontinuation/dose reductions are higher on the AA combo, due to worse side effects:
https://www.ncbi.nlm.nih.gov/pubmed/28463012
And apparently once you move onto AA combo, then Ibrance seems not to benefit these patients in future treatments:
http://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15...
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Dianarose, given that the questionable results are only in your bones, would waiting 3 months and re-scanning be an option? I keep thinking about Mica's great results that involved a "wait and see" approach to questionable results.
Delvzy, no great tips for getting over the cold, but it does seem that they are harder to shake now than they were before cancer/cancer treatment. Just rest up and take it easy, if you can.
Kathryn and Z, those smiles can light up a room!
Cure-ious, you are a treasure trove of information. That information about Afinitor ruining response to Ibrance is definitely something to keep in mind, thank you for sharing!
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These two smiles made my day and reminded this newbie (just a few months into MBC world) to keep fighting and to keep moving even though slow mo is my current pace.
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Great picture and such beautiful, happy smiles. Happy you two were able to met up. Years ago, (2002) when I was first dxd someone would organize a get-together for those who lived in the surrounding areas. What fun it was. BCorg even had a banner sent to the person so that those in attendance could sign and date it. Leaving was tough as you never knew when, or it you'd ever see each other again. Tears, tears and more tears. I only kept tabs with one of those courageous women, as once the "crisis" is over most leave the boards. (me included) Little did I realize then that I'd be back. I found so much comfort then and so much comfort now. Seeing peeps in real life situations means we are living and enjoying each moment. Praying for all of us, and Z - fingers, toes, eyes and anything else that can be crossed, I'm crossing for you. Good news awaits for you!
crissy
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Jalea-I have a bone scan tomorrow. What scares me is I have had two terrible headaches on the right side
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Such a beautiful inspiring picture Iwrite and Z. How wonderful that you met and shared your gorgeous smiles.
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