Bone Mets Thread
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Good morning all,
Patty great to hear from you thank you , hoping the new treatment gets you free of this disease.
Deana hope your blood work turns out well. Thinking of you dear lady😊
Dee so I had written a big long post the other day and it disappeared after that I was rushing around so never got back to it. Anyway in it I stated I would love to meet you for coffee or lunch whatever works on the 11 th?
I'm very happy you are on the trial , one thing I noticed is that it takes a while for Ibrance to actually kick in. My onc told me up to six months. I am on its sister drug so I'm thinking the SE should be similar. Heading over to Naniamo today for a regatta let's hope it doesn't poor too much eh? Take care of yourself and let me know how your time looks for the 11th😉
Wishing all you lovely ladies a great pain free weekend
LMWL yeah for you both so happy to hear good results happy dance is happening right now😊
Wendy
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Hi ladies... just popping in to say hello to everyone. Deanna - I will be interested in what your creatine levels are. I think I mentioned (and you probably know) that Xgeva is definitely hard on your kidneys. I have had times where my creatine levels are so high (above 1.20, I think) that they are unable to give me the Xgeva shot. I try to drinks tons and tons of water before I go to my appointments to help, but mine always seems to run high.
As far as scans - for whatever it's worth - I get both CT and Bone scans every six months.
Because of my husbands new job, we are changing insurance companies in August (Blue Cross to Cigna) and although I have had Cigna in the past with no issues, I am nervous about it....I don't want them to tell me that I have to alter my treatment or that they won't pay for something ( like Xgeva)....
Hugs to everyone!
XO
Andrea
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Wendy, I sent you a pm about meeting up. I'm not in Vancouver until the 12th. cheers, dee
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Andrea, we have Cigna (PPO), and they've always been great -- by far the best insurance we've ever had! I hope you have a similar experience. As far as creatinine, mine thankfully dropped a bit -- from 1.25 to 1.17. And interesting that they didn't give you Xgeva when you were as high as I was last month. Hmmmm.... neither of my onc's mentioned that -- just that they'd order an ultrasound if it didn't come back down. I'll have to ask about it the next time I see either of them. I also didn't know that Xgeva was the culprit. I was thinking it was Ibrance, but I see that my rise does coincide w/starting Xgeva. Still waiting for my CA27-29 results, which usually take an extra day.
So my hair stylist just called to see where I am. I thought my appt was at 2:00, but now see I actually had 11:00 on my calendar! Yikes! I'm blaming it on Ibrance-brain -- or just being way too focused on all this mbc stuff this week!
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Deanna. With all the time and information you devote to all of us it's no wonder you missed your appt!!!!
I never checked my creatine levels. I'll have to look at the pt portal later to see what they are. I had bloodwork yesterday and my TMs are still going down. Xeloda is kicking a-s to my ca and to me!
Babs
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Babs, you keep going girl😃Hopefully I will be coming up right behind you
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Peanut. I hope you and everyone here does🙏🙏
Babs
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Babs, yeah for falling TM's! Keep it up or down actually! cheers, dee
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Hello Everyone, I found an article in Science magazine about two new studies being conducted for her+ and TN patients. It seems they are conducting trials that are specific targeted in real time meaning they give the treatment only to those whose cancer DNA matches the treatment. Here's the link see what you think.
http://scienmag.com/two-groundbreaking-studies-ref...
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I posted a while back about getting a second opinion at Mayo and lo and behold found out it's out of network with my insurance...I have considered finding out what I would have to pay out of pocket for a consult but will probably go to another ONC group that's covered and consider changing insurance plans in 2017. I am on my second cycle of Xeloda which I seem to be tolerating and found out my TMs have dropped over 200 points so far 😀....will take the good news when I can get it !
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Mayo is great, but I've gotten a huge amount of information getting 3 opinions within my own state. I will go out of state, eventually, for an opinion but all you really need is to get an opinion outside of your current doctors practice to get a different and likely useful perspective
In fact, I am headed to Seattle next month where I have an appointment at the Seattle Cancer Center Alliance to finally get an opinion out of state. Really it is to be prepared if and when a major treatment change is needed in the future.
>Z<
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Just wanted to start your week out with some beautiful sidewalk chalk art that I saw this weekend. Great weekend for me as I also met Jobur! Nothing like meeting a bco sister.....It was wonderful. These are the top two winners.
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Lindalou Love the artwork! So happy you got to meet aBCO sister!
Bab
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Good morning all!
Linda, those chalk drawings are gorgeous! We saw something like that in New Mexico years ago & they are even better in person. It's fun finally meeting someone that you've connected with online only, I met up with a woman on a cooking forum, like meeting up with old friends. Wendy & I are hoping to meet up for coffee between my appts on Tuesday.
Leaving soon to head to Vancouver for meeting with Trial onc to find out if I'm in or not. I had a CT at a different centre than I usually do & this CT was much more detailed than I've had before. Apparently I have a fracture in T3 & a Schmorl's node as well. I have no idea what all this means for #4 on my bucket list - bungie jumping. edited to add that I'm just kidding about bungie jumping, but I do want to go ziplining
I had a bad night last night, even with a whole sleeping pill, I suspect that I'm just too wound up til I find out.
Hope everyone has a good week, fingers crossed for me on Tuesday please.... cheers, dee
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Lindalou, that artwork is simply gorgeous. And meeting Jobur, well what can I say other that I envy you!
Dee, THE day has arrived! I'm with you in spirit. I'm sure you will sleep better tonight!
Stilts, WOW! Those TMs are really taking a plunge!
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- Dee. Hoping for good results
- Lindalou. Love the sidewalk chalk art.
- Hugs all around dear sweet friends
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Hi everyone, we are probably gonna have a new vision next week, just have to make sure we are in with new doc, when I will know more I will post. It's been extremely stressful having to navigate new territory, getting opinions and just being scared. But here we are.
Kathryn so sorry for what you are going through. How about an MRI of the brain?
Amy what a cute bunch! Good for you
Dee wowow – that's really tough, we have to travel like 1hour and half, but it's nothing as exotic as your trip. More like bumper to bumper….
Deanna always good advice.
Carol thanks for sharing. This is just unreal. Rachel was just on the thread not too long ago. It's insane.
Aurora the link you sent was so apropos to we have been looking into, thx a lot.! Hope you are doing well.
Z I have to family members that travel abroad, and not much good came from it. One went to Mexico, it was a nightmare. The other one went to Germany I think, and it did not help, he died there, away from his small children. Also Farrah Fawcett I recall went to Germany also was not pleasant. So you are right about FDA
Kathy wish you best of luck.
Letmywifeli how wonderful for you!!! Happy dance.
Patty at least they are acting. It seems that Dani will be on it also, we will know more next week.
Andi so true about the Insurance change. I am with the same Ins I was before, but out of the blue, they decided that instead of 180 pills for my Migraine meds I was getting, (even if I did not use it all the time), instead they WILL allow 24. Yep, so go figure. So…I know this good friend that only uses this sporadically, seriously!
Linda so happy for you. Very smart
Bluefrog thx for the input.
Warm hugs to everyone,
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Hi Everyone, I have been in a funk that I plan on getting out of real soon.
Momatt- I am happy you are getting different opinions... always praying for Dani and for you.
Patty- Waving back at you! I always love when you post...
It's official I will be taking 75mg of Ibrance 2 weeks on and 2 weeks off. I also developed a very slight twitch in my left eye lid... I had to use a magnified mirror to see it.. but I got this weird sensation and when I felt that weird feeling I looked to see what it was. I also feel like I have real dry eye on the left as well that gives it a weird feeling. I hate to say numb because it really isn't numb but feels that way sort of. Not so sure what a reduced dose of drugs and shorter time will bring me.
With that being said, I just found out today from MO that is covering for my MO that is out on maternity leave, that ever since I was diagnosed my bone scan has always showed abnormal uptake in the skull- but never once did MO say I had mets in my skull. Can you have cancer cells there and not mets? IDK... I was so confused today as I asked her why didn't they do an MRI for skull mets? I think she said it wouldn't show... but that does not make sense to me.
Anyway, need to get on the positive side of life and keep repeating that scans in May said healing and stable.
Carol
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hi everyone! I got the call today, I'm in the Ibrance trial, tomorrow will be my first day. Will check back in afterwards. Thanks for all your support. Cheers, de
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carol - I would not get into forensic scan hell analysis mode, especially when the scans in May said healing and stable. I've certainly been there and done that. Lost some sleep, but otherwise it didn't change anything. This was an odd communication choice by your MO, but he'll probably say it is one of those ambiguous scan artifacts that doesn't change treatment decisions.
The scans in May said healing and stable.. The scans in may were awesome. We all have a systemic disease that may or may not show up in scans. But as long as the tumors are healing or stable, the treatment is controlling the cancer. Now about that treatment ... praying ibrance 75mg 2 on, 2 off is tolerable and effective. That's what we really need to worry about. Because the stuff seems to be working if you can stay on it.
dee - Welcome, officially, to tribe ibrance. May your mouth sores be mild and the ibrance kill your cancer. Thank you for doing the trial. The dosing question they look at is really important. Let us know everything.
((everyone))
>Z<
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Dee so happy for you!!! That's wonderful news. Hoping Ibrance works it's magic for you!
Babs
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Dee, wonderful news and best of luck.
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Z,
I was diagnosed finally in October/2015 after my local MO dropped the ball on me. As a matter of fact, I had a bone scan a year ago this month that showed abnormal uptake in ribs, femur, and pubic bone. That was done because of a routine MRI for degenerate disease (had sciatica) and was getting an epidural steroid shot- MRI picked up weighted signals and radiologist recommended bone scan because of my history. Well, after bone scan results they went after my breast and tore that apart looking for the BC. NONE. From there they took X-rays of my hips and legs.. and found a good size lytic lesion in my lilac. I have no clue other than the local MO I was seeing never in her 25 years of practice saw BC come back after 18 years so she dragged her feet. I went from having an MRI in June till October before they finally biopsied the bone. Ready for this ? It took over 3 weeks for results- At this point, I couldn't walk as the met in my left femur was almost through the cortisol bone. That pain started in September. I fell through the cracks of the system -
With that being said my daughter's are from North Shore Boston and insisted I get a second opinion at Dana Farber. My bone biopsy results were triple neg.. but my original bc was not. Unless there was a new BC primary ( there was not) Dana felt this still had to be positive and the rest is history for now-
Dana Farber did their own bone scan in Feb that showed abnormal uptake in the cranial. I never had cranial done as part of the bone scan a year ago, and to be honest I don't know how many are getting bone scans that include your head. When you compared my bone scan from local MO in July/2015 to Dana Farber bone scan 2/2016 there was progression but because I went without treatment from June-Oct. Every scan since I have stable and healing.
I was told and also have dissected my reports and flipped out when I saw that abnormal uptake in cranial in Feb. MO (who is out on maternity leave now) love love her.. said to me that she reviewed this with radiologist and it was nothing to worry about. So, I guess noting to worry about and yes you have breast cancer in your skull mean the same thing, which is don't worry about it.
If I am concerned or worried at all, it is that the Ibrance at the higher doses were effective. I wish I could have stayed there. I was able to do 125 for 5 rounds. Then started having problems and it progressed to where I am now. 2 on 2 off at lowest dose. Scans again at the end of the summer will tell a better tale. I asked MO yesterday about the two sister drugs. They are still in trial and they think of nothing next until there is progression that they can biopsy and weigh out.
Lesson for today: Let Dana Farber worry about it, the twitch in my eye resolved on its own so it probably is absolutely nothing to do with skull.
Carol
Will post this in Ibrance too....
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Dee - Congrats! I'm so happy for you.
Carol - my bone scans always include the head. Abnormal uptake on bone scans does not always mean mets. I've had my share of uptakes where mets were ruled out. It could a very old head injury. I'm in the same position as you with another MO covering mine for mat leave. Not easy switching from one to the other. And this is the second time! I selfishly hope she will stop having babies. She leaves for 9 months at a time. But it's also good to have another set of eyes look at our results. Good luck on your new dosage of Ibrance.
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LindaE- I was thinking that the uptake was from being hard headed.. that I am!
LOL this is my MO second child. she has one of each now. How do I tell her that she doesn't even need to have any more? She is just simply gentle on my mind.. I like that... Although I hope she is having a great summer... she will be back end of Sept! DH remembers her pointing to the imagine of the skull and saying this isn't anything don't worry about it. 0 -
hi all, long, long day at the cancer agency. But I have my Ibrance and femera, they gave me a hard time at the cancer pharmacy about brand name letrozole but when I returned to pick it up, it was there. I'm going to try taking it at dinner as they say it can cause excessive drowsiness with my zopiclone and I'm alright with that.
I was patient #9 of 10, so lucky to get in.
Had coffee with Wendy, it was great, we had so much to chat about. Take care all, cheers, dee
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Dee, congrats on getting into the trial. I hope it works! I haven't heard about excessive drowsiness but I definitely suffer from this. I cannot be trusted to drive for long distances but lately I find myself waking up at the dinner table or simply while playing cards or reading. Anyone else experiencing this?
Amy
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Dee congrats on starting Ibrance. Hoing is brings you great results. So happy you and Wendy got to meet. Our BC sisters are so very special!
Bab
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Carol so happy for you, that the twitching has stopped. This things do pop up. My other daughter just had this for a couple of days, just when we thought maybe we should worry about it, off it went. Eagerly waiting with you for MO to return all rested!
Just so you know, short of 2 years Dani was having pain on her shoulder area, she told her very respected Breast surgeon, and her Onco, and they both pooh pooh it away!, i told her to see an orthopedist, when she had the Xray done, the doc almost collapsed, he was not aware of BC (she did not want to tell him, yeah), and then bone scan and the rest is HX. But, really, these docs did not wanna believe she could have mets, THEY SHOULD know better. Incredible. Like in your case, she dismissed it bcs she thought after 18yrs it cannot be, it's pure blatant ignorance. Dani's Gyno, did not want to send her for a Mamo WHEN there was a nice size lesion on her breast, he refused to give her a prescription BCS she was TOO young to get BC!! For real! Ignorance!!! (yeah in a perfect world, maybe, but...) (we paid out of pocket $400.00)
LindaE you made me laugh! How DO you tell her not to have more kids??
Hope you are doing well.
Dee that's really nice having coffee with Wendy. And cheers for your new treatment! Good for you that you fought for Brand name, it's the way to do it.
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Dee and Wendy- I could almost feel that hug the two of you shared! Awesome!
Momatt-Just being back on Ibrance makes me happy! Praying I can make this work!
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