Bone Mets Thread
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Terre - it sounds like you have a busy October ahead. We will miss you while you are gone.
Cjanet -I hope you had a wonderful time with your friends. Those times are special.
Deanna - I am also keeping my fingers crossed for you.
I want to thank everyone for your suggestions to prepare for my first Zometa infusion. I had the first infusion yesterday, and I followed everyone's advice- was well-hydrated, took Tylenol, took Claritin, and made sure the infusion was done slowly. On that last point, I was pleasantly surprised when the infusion nurse told me that the machine was set to dispense the Zometa in 35 minutes rather than 15. I didn't even have to make that request. I felt great all day today, no se's.Thank you, thank you, thank you.
I also saw my onc yesterday. He said the tumor in my breast has become very soft and much smaller. I had never seen him so excited. For now, at least, the Arimidex is working and I am tolerating it well. He did not yet have the CA 27.29 results, but he said he would be "shocked" if they were not down significantly. Of course I was starting at 947 so they have a long way to drop.
Thank you all for being so helpful and supportive. I learn so much on these boards.
Have a good night.
Lynne
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Amy, I have been on Faslodex for 4 years. I started out with your regime but had to go to one injection a month because I get severe long lasting migraines. Mostly I get muscle/bone aches, but always the migraines. Those luckily aren't a common SE, so you probably won't experience that. Hydrate as always and I have found a nice hot Epsom salt bath helps with the aches. I have lab on Monday to see if I can get the shot on Tuesday. I get Faslodex and Zometa but now spaced 2 weeks apart and that really helps the SE's. Are you on a bisphosphonate?
Deanna, Hoping your CBC is good on Monday so you can start cycle 3 of Ibrance.
Lynne, glad your Zometa infusion went well and that your tumor is smaller!
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Lynne, I'm happy to hear that Arimidex is having these good results for you. Have you been taking it long? Valerie
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Lindalou, I get monthly Xgeva.
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Lynne - great news!
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Amy, so far I am loving Faslodex. The monthly shots (after the first month) so far have been very easy, and I haven't any SEs that I can discern from Ibrance, which I started at the same time. The Faslodex thread here has some very helpful information about how the shots need to be administered -- things your onc's office may not do unless you ask -- as well as some simple things you can do to reduce the potential of any SEs. Of course, my CA27-29 will tell us if it's actually working as well as I hope it is based on my pain level, which has decreased significantly since starting the combo.
Linda, I'm thrilled to know you've been on Faslodex for 4 years. My local onc assures me he has many women who have been stable on it for multiple years. Good luck with your labs on Monday!
Glad you're looking forward to your visitors, Terre! Is October Springtime in NZ?
50sgirl, looks like we're both anxiously awaiting TM results. Fingers crossed and prayers that yours are on a downward plunge!
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Amy, that is good news! I close my ears to what anyone has to say, unless they are an expert and qualified to give me info.
Cjanet, dinner with friends? That trumps medical testing any day. Enjoy the dinner
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Terre sounds like you have a lot of fun in store. Ahh I was in New Zealand in October and loved it , Thames my husband worked and I hiked. I get the knee pain as well tried to follow my two 17 year old sons to a restaurant and all I kept thinkng was wow I look like a granny running after them.
I wish everyone a a glorious evening and a restful night.
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Hi guys off to grand daughter this weekend. (Terre are u a mind reader?!). Hope you have fun with your very busy month. Nothing makes us happier 😸
Weirdly enough Hurricane Joaquin is supposed to hit there Sunday. Usually they head to Florida or the Gulf Coast. Now my DH and I have become. hurricane hunters! Not usually in Maryland/NJ/NY. Dune, you stay safe too and anyone else who lives in that area. We are supposed to be home on Monday, but living in Florida for 30 years, we know how peculiar these storms can be.
Good health and happiness all.....Myra
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Deanna, I had scans done after 4 months on Ibrance/Faslodex combo. My pain had diminished to almost nothing. My scans showed my bone met had shrunk and nothing new. I believe lessening of pain is very good news. Prayers for you.
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Deanna good luck on the TMs, I'm sure they will be good since your pain is lessening. I'm the opposite: pain increasing daily.
I ended up going to dinner and it was lovely. My MRI is tomorrow 1 pm. I'm scared 😓
I think my onc is going to switch treatments again and I have no idea what's next
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Cristina ~ I will be thinking of you tomorrow -- sending positive, calming vibes -- especially around 1:00 your time! As far as switching regimens, you haven't been on Faslodex+Ibrance very long, and I'm wondering if the pain you're experiencing could be tumor flares from the drugs battling your bc cells. If you follow the Ibrance thread, it seems like several women there haven't had significant drops in their TMs for several months. Clearly, I'm not a doc, but it always concerns me when anyone jumps from tx to tx in quick succession.
Northtexas, thanks for the encouraging words about Ibrance+Faslodex. I hope the combo keeps you stable or even gets you to NED for a very long time!
Caryn, I so agree with you about closing our ears and minds to negativity! It's interesting how even a casual comment can stick with us and really work on our subconscious if we let it. You really have to work at eradicating them because otherwise they absolutely can impact the course of our disease.
Myra, enjoy your time with Mallory! We're all looking forward to more photos!
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Yes, there are many people that we come into contact with in our medical adventures, who sometimes, overstep their area of training/expertise. Sometimes they say things or give non-verbal cues that they are not qualified to give. I realize that they may have had many years of experience in their field, and they know far more than I do, but they are not oncologists, radiologists etc. If they want to make observations or guesses based on their experience, the need to keep it to themselves.
I know some very experienced teachers who think they can "diagnose" learning disabilities, ADHD, etc. because they have taught for many years. I have taught for many years as well. I can observe students, note my observations, use general education assessments, but I am not qualified to make any type of disgnosis (our psychologist, resource specialist etc. do that). Do I have suspicions based on experience? Yes, but I keep them to myself.
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Good morning all,
WOW, such good experiences with Faslodex.
Lynne - good news and glad Zometa went well.
Myra and Terre - safe travel to you both.
Cristina - good vibes coming your way today for your MRI.
Annie - How was your doc appt yesterday?
Deanna - Hoping your tooth extraction is healing well and TMs dropping.
I had my Aredia infusion yesterday - everything went well. Blood work is good and TMs are stable.
Sending hugs all around and wishing a day filled with love.
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Have had one heck of a week. More roller coaster ride. Sat had trouble breathing did stuff around the house with plenty of breaks to rest. Tried to decide do I go to ER or not. Breathing got worse, rested more. Breathing was still lousy. When it got to the point that I couldn't talk decided to go to ER Got son ready to take me but breathing was even worse so called ambulance, Had son speak with 911 cause by then I couldn't talk at all.Got to ER and wound up being admitted.Doctors did tests to figure out what was going on and how to handle it Husband, daughter , son and son in law came to hospital. staff looked at DD like she was in the wrong part of the hosp. Doctor reassured me that I would get to see baby no matter what that the doctor would have me wheeled to the maternity area.Good news was that the lung mets were ok but was developing heart problems OY Drs added some meds (now have a cardiologist in addition to the other drs.) and let me go after 3 days on Tues afternoon. Daughter did deliver her baby Wed morning,(just realized it only yesterday) all went well A healthy little girl 7lbs 1 oz 20" long One long week with plenty of ups and downs. But I'm still here and now am a grandma. Getting ready to go back to hosp to see DD and baby. Feeling better now and ready to get back to living, Have chemo tomorrow. Hope to have next week away from hosp don't like that I have been at hosp every day this past week. At least life is not boring right now, could use some boredom. Charlotte
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Hello to all,
I'm a little lost right now as this thread is moving so quickly. Going on memory here so please forgive me if I leave anyone out.
Amy, that is great news! Healing is better than progression. Praying for good results with your MRI.
Deanna, sorry to hear your neutrophils tanked but prayers for those tm's to be on the down slide!
50sgirl, so happy to hear the arimidex is working for you. Visualizing those tm's coming way down.
Terre, enjoy your visitors and of course we will miss you!
Cristina, glad you decided to go for the dinner with your friends. I'm praying for your MRI to surprise you with good results.
Myra, enjoy your time away with your beautiful granddaughter, please post some more pictures.
Charlotte, congrats on being a grandma! So sorry to hear of your heart troubles and praying for everything to stabilize quickly. Wishing you some boredom and less hospital visits. Please keep us posted as to how you're doing.
Linda, yes I saw my GP yesterday. So I'm to stay on the Celebrex with doubling up on the stomach meds, so far so good. My blood work came back ok but of course I wish it were better. WBC is still slightly low she said this is from bone marrow suppression caused by the radiation. Vitamin D level took a big drop after I just got it to the higher end of the range so taking two 50,000 iu's weekly. Thyroid is slightly low too but not too concerning as of yet. She read me my CT scan results and I guess she said the mets that have been radiated are dead, filled in with scar tissue. The radiologist said I was stable and praying it stays that way for a very long time!
Hugs to all, Annie
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Charlotte - What a week! Congratulations! Will we see pics soon? Sorry about heart problems. We should all be spared from other health problems!
Annie - good to hear you can continue Celebrex and I just love reading "dead mets"!
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Linda, I'm so happy to hear this Aredia infusion went well and yay to stable tm's!
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Oh, Carlotte, what a week you've had!!! That breathing episode and need to call an ambulance must have been so frightening for everyone! But what a wonderful blessing you've also had! Congratuatlons to all! Hope you'll be able to share a photo of your new granddaughter very soon! And I hope your cardiologist can keep you breathing easy, so no more scares like that one must have been!
Annie, glad your GP's plan is working. And love, love, love hearing that you are STABLE!!!
Good news that your TMs are also stable, Linda!
It's a new month, and hopefully it will be full of only good news -- stable, NED, falling TMs, decreased pain, meds working, fewer SEs -- for all of us!
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Congratulations on your lovely new granddaughter Charlotte and yes, what a week you've had. I hope you don't have a repeat.
Annie & Linda I'm so happy you are stable!
I really wish we could all be in a great place at the same time but of course that's not how Stage IV works. Some are up and some are down. This disease is so manic...BUT, another weekend is on the horizon which is always encouraging and hopefully relaxing. Don't forget daylight savings time ends on Sunday morning.
Deanna, Annie, Linda & Charlotte, you all do such a great job of keeping up and remembering our members and their trials and tribulations. My memory isn't as good as yours. What a gift.
Amy
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I don't know how everyone remembers everyone & how they are doing, I am completely hopeless at it.... my poor chemo brain, it hurts when I try to think too much, so forgive me, please.
Linda & Annie, I'm so happy for both of you! Linda, good luck with your appt next week. Terre, I will miss your posts about your kittens, it's one of the highlights of coming to BCO! Deanna, fingers crossed that your neutrophils (sp) will fall along with your TM's. Charlotte, yes, boring would be good sometimes! But congrats on the GD. Cristina, I was very surprised that you delayed your MRI, but sounds like you made the right decision. Dinner out with friends & a quick reschedule, good for you! Amy, good news!
I got the call yesterday, I am having another round of rads, this time to my rib & hip. It's going to be a very busy 2 weeks, with labs, 2 CT scans, pamidronate infusion, radiation. Sometimes I think to myself "don't they know I have cancer? I can't be running around like crazy all the time!!" Oh well, better than the alternative!
Take care to everyone I have missed, I don't mean to. It's a nice day here, so I'm going to go out & play in the garden a bit.
Cheers, Dee
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Thank you Dee. You should see the list of questions I have for my Onc on Monday. When she sees me coming with all typed up documents in double copies, she always smiles and asks what's new on BCO! Good luck with your next very busy 2 weeks and enjoy gardening!
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That's funny Linda! Let me know how it goes. I can't find out about either of those trials until she gets back from her leave, so I leave it in your hands to get some info for us! Dee
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Hi everyone and once again I apologize roar boat addressing each one of you but be assured that I read every post and pray/send good vibes accordingly.
I need your support and prayers as I will be undergoing hip and femur surgery on the 16th. This is the same leg I had a rod put in in 2013 when they had. discovered the mets.
My surgeon has warned me that this is a high risk operation due to the cancer but I told him about a case of a 72 yr old woman with Mac who took the operation even though they told her she wouldn't live much longer to which she replied she would rather live pain free for whatever long she had. She died two years later.
So in my mind if a 72 yr old did it I can do it at 55.
I know there are risks but getting rid of the pain is priority for me.
Any comments/opinions welcomed.
Aurora
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Aurora, Good for you! Quality of life for me, is the most important. If your life is filled with pain, what is the point?? And there are risks with everything in life, weigh the risks & make an informed decision which is exactly what it sounds like you are doing. Only good thoughts coming from me! Cheers, Dee
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Aurora,I would make the same decision if I were in your situation. I will pray for you and hope you have successful surgery and a quick recovery.
Lynne
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Charlotte - congratulations! We want pictures! Sorry about heart problems - that sucks.
Linda - great news!
Annie - sounds good for you too!
Dee - Ick @ busy week and rads. Check the cats cats cats page - I put up a story about Kitten Inn that made the paper. Three teenagers rescued a kitten from the river and walked "up Kelson Hill" to deliver it to KI. Kelson Hill is scary to drive up, it's so steep! These kids deserve a medal.
Aurora - sending prayers for a highly successful surgery.
Sending hugs to all,
Terre
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Thank you To those who responded. I needed some reassurance because this isn't an easy decision. I'm coming from a strong place but I'm fully aware anything can happen.
Thank you for your support.
Aurora
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The scan was so painful! My neck was burning. I think the doctor should have the results for tomorrow's appointment. We will see how things go
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Aurora, I think a decision to ease pain is always the right one! I do think it could be worth the risk. I am living in daily pain and I think I would want to try anything that improves my QOL.
Annie- yay for stable!!!! Awesome! I'll take dead mets any day!
Dee- I didn't delay too long as I got the scan today. I knew they'd fit me in.
Tomorrow when I see my on I probably will bring up this group as you guys have been lifesavers.
Deanna I am thinking of what you said about switching treatments so quickly. I'll see what the results are and if a change is indicated I will probably see my second opinion doc and discuss w you ladies
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