Bone Mets Thread
Comments
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stilts welcome the first days are the hardest and then it gets easier and easier really. Once your treatment plan is in place life goes on.
Dee what does your gut tell you? Even though getting a second opinion is difficult sometimes in Canada I would say do it so you can be reassured you are going the right path. Having said that the trial is pretty easy and I feel great virtually no side effects. I think I may be getting the placebo but the trial nurse said not necessarily seems to be working so who knows. Lots of doctor visits but I imagine you could do that in Victoria. Good to know there are options.
Milaandra nice to see you here again. Scanxiety sucks big time I always try and think we all go through this and worrying about something bad won't help so try and keep busy but you know all this. I am crossing all my fingers that it turns out well for you.
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Dee, completely agree with others on this thread. You should definitely get a second opinion. Anyone can have progression (praying to God that it is not the case here), but the evidence your MO is using to reach the conclusion about progression does not seem substantial. Starting Ibrance is no biggie but if you do not have progression, it will be another cancer drug that you will be using up too soon for no reason and making your body eventually resistant to it sooner than required.
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Dee, Relying on bone scans only is not the safest thing to do. Hospitals in Canada have a tumor committee, can you ask that your results be reviewed by the committee? I agree with all the other gals about a second opinion. Can your PCP refer you to another MO? How is your pain level now? In fact your MO can arrange for a second opinion, it may ruffle her feathers but that's the least of your problem. My MO worked with me and the top specialist here in Montreal when I asked for a second opinion. I admit I was a little apprehensive about her reaction, but she told me she would do the same thing. I did not need a referral for the specialist in MTL which really surprised me. Do you have private breast clinics in BC? It may be worth the money if push comes to shove. The trial Wendy is on is recruiting until November of this year if my reading is right. You may want to check that, but you have time to make your decision.
Milaandra - Crossing fingers and toes as you wait for your results!
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Dee, I'm so sorry about your upsetting situation. None of us have seen your scans, but I can share a couple of things that may be worth adding to your thought process. My most recent scans showed a lot of healing/improvement, but I also had areas of concern due to higher uptake, including one area (clavicle) that has never even been called out as a concern in the past. And my onc did not change my regimen and it will be 6 mos. until my next scans. In other words, the healing overrides the new area of concern, at least for now. However, I am on Ibrance as one of my meds, which is known to take awhile to fully kick in to its maximum benefit. The last time my regimen was changed (08/15, after Anastrazole failed me), there was no question about the need for a change based on my increased pain and TMs. And in that case, I dragged my heels about getting scanned and by the time I did, I was in a lot of pain which came on like gang busters once it started.
I don't really think you have a bad option in front of you -- the Ibrance trial, which I'm guessing is Ibrance & Faslodex, since I think Ibrance has already been approved in Canada w/Letrozole. Personally, I love Faslodex & Ibrance and hope to stay on it for a very long time, but I have also heard from many women and my local onc that Faslodex alone (pre-Ibrance being available) has kept women stable for 3 and 4 years, so I would not be afraid of getting in the trial and getting only that, especially if it's a switch from an A/I. Plus the results for Ibrance have been so extraordinary, it's been fast-tracked to approval for every Phase 3 trial it's been in -- at least in the US.
How long have you been on your current regimen? I think that would be a decisive point for me. If you've been on it a long time (like 2 years, let's say), then it may well be starting to lose its effectiveness. If you haven't been on it very long, then if I was in your situation, I might ask for another month or two, but carefully watch my TMs.
Hope this helps. And hope you're feeling a bit stronger today! (((Hugs)))
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Hi all!
Firstly, thank you all for your thoughtful replies, I'm sorry that I didn't answer any of my PM's, I was just too tired last night. I am waiting for the report to be sent to my PCP & then he wants to see me again, I am going to have a heart to heart with him about all of this & ask him if he can somehow facilitate a second opinion. His take was that I was stable as was the RO's. All my labs were normal, some even below normal range which he said was good.
I got a call this morning from an MO in Vancouver, I have an appt with her on the 14th of June to talk about the trial, but I am going to pick her brain about my scans. My MO in Victoria seemed to only be focused on that I was having more pain, but I told her it was only marginally worse. She totally blew off that she talked about how bad my skull met was when the MRI showed it wasn't a met at all. I keep being told how great she is, but I'm beginning to wonder. She is so busy, she doesn't have any idea of my meds that I'm on or was on. She talked about putting me on Tamoxifen again, because I was only on it a short time & she thought it might work? I was on it for 6 years & it failed me!!!
With all my scans except the bone showing stable and all my labs being normal, I can't help but think that I must be stable, so how is it that I'm being thrust into second line treatment already? MO says that the bone scan is showing the early signs of progression that isn't showing on the CT.... this isn't how I understand that it works. But I'm not a MO.
Babs, love the van! You are a sport!
Lynne, good luck, doesn't sound like fun, but you'll do good I'm sure. Milaandra, good luck!
Sorry that I'm still not all caught up here, probably won't. But I appreciate all of you here, such a great group of women & you too, Letmywifelive!
I'm going to go back & read all the links & do my own research. cheers, dee0 -
Deanna, I was composing as you were posting. I have been on anastozole for exactly 2 years. The trial is called Palestra, which is Ibrance & another drug, which I'm not sure whether it's Faslodex or Letrozole. A trial is the only way that I could get Ibrance because it is not funded by our Cancer Agency yet (if ever) and I don't have extended drug coverage. I was told that the Ibrance part was $6,000 per month.
When I have the meeting with the MO in Vancouver, I will ask if I can start the trial after we get back from our trip. That would start me at the end of September. Thanks for your insight. cheers, dee
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Milaandra - Good to see you here! We missed you. Hoping that you can get some relief on the tooth situation. I know you've been fighting it a long time!
Carol - Totally understand taking time off from the boards...glad you got some good scans!!!
Dee - I would agree with the group...this recommendation seems a bit much based on what all your other tests have shown. It's harder to stand up for ourselves when we are exhausted!
Babs...love the van...you could have been an extra in a film with that one!
Stilts - Welcome! (Sorry you are joining our club.) It gets much better when treatment in place and these folks have the best advice!
Lynne - Good luck with the kidney treatment! You are due for some pain free summer days!
Hi Deanna, Wendy, Linda and everyone I've missed! Hope your week is pain free and you all have time to think about something besides cancer!!!
Hope Patty can rebound and enjoy the summer with her boys!
We went to Michigan for the holiday weekend and the beach was excellent medicine. On the way back we stopped to see my brother and his family and my DH noticed the "Look" from the group. That - OMG look followed by the "why don't you look sick" look, followed by a nice visit that wasn't too terribly awkward. Makes me soo grateful for those who have been able to move on the the "You are still you" method of being friends.
I've decided to pass on the Pfizer ambassador opportunity. Rather than travel or talk about MBC I'd like to spend time with family and friends, gardening, writing and "smelling the roses."
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on the subject of scans, once I had the original bone scan that picked up the mets, I've never had another. My onc says they do not give her enough accurate information because healed areas will still show up. She relies on ct or pet scans. Will be having a pet scan as soon as I get insurance authorization and already having major scanxiety
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Dee (and this may be of interest to other Canadian gals), I can't help but wonder if your MO has some kind of other strategic component as to why she wants to change your tx. Below is an article from the pan-Canadian Oncology Drug review. They are the ones who make recommendations to provinces (except Quebec) when new drugs are approved by Health Canada. Sadly, they do not recommend funding/reimbursement of Ibrance + Letrozole. Another article on that site discusses Ibrance + Faslodex as they anticipate pressure from docs to offer this combo as second line tx. But, Faslodex is not funded in any province in Canada. When digging further, I found out and I may be wrong, that Fas is no longer provided on a compassionate use basis to new patients. We have to apply through Faslocare for review and approval and I don't know what % is covered and what is out of pocket. I still can't understand why Fas is not offered across the board. What's the use of having Health Canada approve new meds when provinces decide differently?! In this context, clinical trials are certainly attractive.
https://www.cadth.ca/sites/default/files/pcodr/pcodr_palbociclib_ibrance_abc_rec.pdf
I'm glad you're seeing another MO in June and hope your PCP will facilitate a second opinion. Seems as if yours has been smoking some good stuff... I will look into the Palestra clinical trial. Never heard of it before.
Wendy, you were questioning if Xeloda is funded. I found a site that gives all the info for each province. It's called drugcoverage.ca
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I just questioned MO about Bone scans, vs CT scans vs Pet scans today. I had read where someone posted something about lytic bone lesions not showing up on bone scans. How she explained it to me was that a bone scan cannot tell you what type of met it is only that there is abnormal uptake of nuclear med - but the CT scan does tell you what it is. Also, bone scan can show more uptake and the cat scan will verify what that is. i.e.: I had that happen to me in my report two scans ago. Bone Scan said more uptake in thoracic spine column. Cat Scan said sclerotic rims in lytic lesion in thoracic spine correlates with more bone scan uptake. The sclerotic rims was evidence that my lesions was starting to heal.
Her answer on Pet Scan was that they just don't use them because they get more accurate information from bone and cat rather than pet and cat.
Carol
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Ok, so after reading all the post on pet scans versus CT scans versus bone scan I have a question. My last scan was only a pet scan which showed that my cancer has progressed to almost all my bones and now to my lungs. So is a pet scan by it self very accurate?
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Peanut- I would ask your MO why they don't do CAT scans or bone scans to compare it with. If you have time you can google the reliability of pet scans only. They may also detect cancer when other imaging techniques show normal results.
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dear all,
Thank you for your warm welcome for the 33456676433th time. Living in Denialand on painkillers, I guess I skip the extended bone mets..
Dee, I get you. My MO is a great doc too, too busy most of the time. I received a message from her asking how I was doing, which surprised me in a happy way.. As I know she is really busy. I, remind her of the therapy details at times, like you do, but I figured it's not cos they are ignorant.. But that they have too many patients and cannot remember all details. Important thing is their experience. Once you remind her of the details, you can trust her knowledge and guts. In fact, I prefer this to a absolute awareness of the doc, as they might be more pushy. This way it sort of becomes a team work, you asking and commenting more freely.
Good news girls! After my long journey with just tramadol retard for three years 3 per day.. I had become addicted to it last summer so had to switch to a codein formula, jurnista & fentanyl patches the last year. Today I took just one tramadol and it has eorked fine so far. Do not throw your ex meds to thrash:))) less painkillers mean less damage on kidneys..
My main formula is one activity per day.. Yet there are horrible days still. Then I feel confident Inam all armed!
Barbs I laughed outloud btw.
Next week my bloodwork& scans will determine whether I stick with X a bit longer or move onto Navelbine & Aramidex. Don't really worry as that will not change the result.
Yep, holiday has been good. We'll be going soth to cousins midJune as ds' school closes.. Then will be back at the summerhouse as much as my therapy dates allow me. I feel much better here:) if any of you are planning a trip to Europe, you should add visiting me to your program:)))
Eyes are closing.. Time to sleep.
Hugs & love
Ebru
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Thank you Lovemaltese for the response. I had pet ct scans in the past and my MO did show me the comparison but the fact that she only did a pet this past time had me confused and I guess I was hoping that maybe it wasn't as bad or that it could have been inaccurate
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Ottawa Hospital in Canada launched world's first clinical trial of double-virus cancer treatment. The clinical trial, which is scheduled to run until November 2017, will enroll up to 79 patients whose cancerous tumours have resisted conventional treatment. The clinical trial is open to adult patients with solid tumours whose cancer cells express a specific protein, MAGE-A3, which make them vulnerable to the engineered viruses. More than 30 per cent of cancerous tumours express the protein. Hospitals in Ottawa, Toronto, Hamilton and Vancouver, Canada are taking part in the clinical trial, which is being funded by the Ontario Institute for Cancer Research. It will take up to a year after the end of the trial for researchers to analyze all of their data and publish their findings.
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Wendy...if you don't mind me asking,which trial are you on? Was it a difficult decision knowing you might get placebo?...facing that decision next week so I'm stressed...anyone else have thoughts or experience
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Stilts. I'm on the Monelesa 3 trial which is Faslodex and riblicono (probably spelled that wrong) the latter is a sister drug to Ibrance and the placebo. So I am receiving the Faslodex shot for sure its whether or not I'm getting the placebo or the rib.. medication. The thing for me was that I was offered it as a viable option and if I didn't like it I could leave and start with an AI . I'm on phase three now and it seems to be working. I have almost no side effects and am pretty happy thus far with my decision.
Wendy
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Just got more news this morning...ONC wanted a bone marrow biopsy before more treatment and lo and behold I have mutant BC cells that have changed to triple neg from ER PR pos ...no more AI and I won't be doing the clinical trial I was stressed out about...new treatment plan I hope on Monday...if anyone out there has similar experience I would love to hear from you
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ok that's me BUT when they decalisfy the bone they loose Er/pr status. Have another patholgist look at your results. I will post my results for you. I am 8 months on drug that is working that should not be for triple neg.
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St- here is Dana Farber pathologist second opinion : Local onco would not had started me on letrzole and Ibrance. My BC came back in my bone only not breast. Hope this helps. Second opinion for me was helpful.
Negative - ER, PR, HER2 (1+)
NOTE: It is unusual for a tumor to retain positivity for mammaglobin and GCDFP
but lack ER positivity. This raises the possibility that a technical artifact,
such as decalcification, may account for the unusual staining. A repeat biopsy
is advised to determine hormone receptor status, if clinically indicated. Dr.
Jane Brock has also reviewed selected slides and concurs.
The immunoperoxidase, immunofluorescence and in-situ hybridization tests
performed at Brigham and Women's Hospital were developed and their performance
characteristics determined by the Immunohistochemistry Laboratories in the
Department of Pathology at BWH. They have not been cleared or approved by the
U.S. Food and Drug Administration (FDA). The FDA has determined that such
clearance or approval is not necessary1 -
Hi all!
Just wondering how long any of you have been on arimidex? I've been 2 years, scans & labs say I'm stable, MO says I'm not, wants to change meds & have me go on an Ibrance trial, so I'm just trying to get all the info together before I go for this meeting. thanks all, sorry I haven't been here much to be supportive, but soon I'll be back, cheers, dee
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Well, I pushed and pushed and pushed until I got my dentist to see me today. It *is* in fact exposed bone. She gave me a prescription for five days of penicillin (big time infection) and a chlorhexidine mouthwash. That will keep me going until I see my oncologist for the CT scan results on Tuesday. It has gotten bigger over the last couple of days, and I was terrified it would just keep going, or I'd get another lesion in a more visible part of my gum.
So it's rare to get osteonecrosis, it's more rare to get it after less than 2 years of Xgeva, it's even more rare to get it in the upper jaw...well doesn't it just figure that I'd beat all those odds.
I know there are a couple of you that also have it...I'd love to find out some details if you're willing to share. Things like, did it continue to worsen, did it heal (they say only 40% do), if it did, how long did it take for the gum to close back over, did you get debridement...that sort of thing. Anything you can tell me would be greatly appreciated.
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Hello everyone, I haven't read here for awhile but I skipped ahead from 3 pages back because I wanted to let Christina know something. I recently read an article where it was mentioned that metformin works better on triple neg breast ca than it does on hormone+. You probably know they've been studying it but I don't know if there are any results yet. Anyway, I think it's something to consider because I also read that metformin goes after the cancer stem cells.
Hope everyone is doing well and someday I will catch up here.
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Dee, I've been on Femara (sister of Arimidex) a total of 2 years now. I started on Femara but a few months after dx, MO thought there was progression and switched me to Tamoxifen for 5 months. Because of Tamox SEs (and in hindsight I was stable), I was switched back to Femara since Sept 2014. In the fall of 2015, I had some progression on spine but improvement elsewhere so we decided to stay the course with Femara.
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Dee,
I was only diagnosed a year ago, so I my personal experience of 1 year on Arimidex isn't of much help, but I recently asked my MO how long his patients usually see success with Arimidex. He told me that he has several patients who have been on Arimidex for 7 or 8 years. He said it would be difficult to say what the average time is since every person and every breast cancer is unique. Sometimes the drug loses effectiveness, but some people change treatment plans, not because the treatment is no longer effective, but because the side effects are difficult to live with.
Lynne
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Hi Milaandra,
So glad you were able to get in to the dentist and get an antibiotic!! Sorry that you are having this "extra" experience...you are definitely due for some better luck!
I'm sure someone will be able to provide some info on things that will help.
Thinking of you...
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I would like to just mention that after having chemo in early 2011, I started on Arimidex in November 2011 and have continued having stable scans without progressionsince then. So 4 1/2 years and counting.
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Hi all!
Thanks Linda, Lynne & MrsM for your experience with arimidex, I was sure that I had read that quite a few women were stable for quite a few years. I would like to stay on it, but this may be my only chance to get Ibrance, but I don't want to cut short first line treatment if I don't have to.
I just got back from PCP & he agrees that I should go to see the Trial MO & at least get a second opinion. He doesn't understand why the MO is really only looking at the bone scan, in her report she says "bone scan which does show some progression in the left orbit, sternum and pelvis as well as the thoracolumbar spine" Then the next paragraph says "MRI & CT head do not show anything of concern" and "CT scan of head/chest/abdomen/pelvis however is completely stable" Lab tests showed normal ....
If you can think of questions I should ask, I know there's going to be things I've not thought of. I have 11 days to put my list together. thanks all, cheers, dee
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Stilts - Welcome! MBC is a constant dance. I feel like the ups and down are crazy but you just start to really study and learn on your own and with the help of these wonderful ladies. I have refused many treatments and gotten second and 3rd opinions at times. I was NED for 29 months on no traditional treatment except xgeva and 5 rad treatments to prevent paralysis, Now I have added in ALs. Also back on the Rick Simpson protocol and juicing again (which is how I got to NED the first time but stopped it after 4 clear scans). Who knows what works and what doesn't. Each of us is different. Can I suggest Kris Carr crazy sexy cancer and her crazy sexy diet books. May I also suggest the book Life Over Cancer, The block center program. Has helped me tremendously. I was thinking about this last night. My doctor gave me 30 months in Dec 2013 while waiting for my biopsy results as I had mets to the spine. By July 2014 I was NED. I went through the stages of denial, the bargaining, the grieving, the acceptance. Then I was ok. Then I wasn't as of last month. Anyway what I am saying is I have passed my "expiration date" and am doing ok. Some people live years and years. Do not let the statistics scare you. I have lived to see 2 grandbabies born and worked full time sometimes 70 hour work weeks for the last 2 and a half years. I have just made the decision to take disability at the end of this month. It is hard but I am on the road 20 days plus a month and need to focus on me for a while and I have a great disability policy. If you feel ok and are used to working I would continue if that is what you want to do.
Milaandra - Hoping that you can get some help on the tooth situation.
Carol - glad you got some good scans!!!
Dee - The hardest thing you can do is disagree with a MO but it is your right. If you feel you cannot speak up bring someone with you as an advocate and tell them what to ask,
Babs...ha just my luck!!
Lynne - Prayers your way
Everyone I missed may you have beautiful days ahead this week!
Jamie
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Stilts - Welcome! MBC is a constant dance. I feel like the ups and down are crazy but you just start to really study and learn on your own and with the help of these wonderful ladies. I have refused many treatments and gotten second and 3rd opinions at times. I was NED for 29 months on no traditional treatment except xgeva and 5 rad treatments to prevent paralysis, Now I have added in ALs. Also back on the Rick Simpson protocol and juicing again (which is how I got to NED the first time but stopped it after 4 clear scans). Who knows what works and what doesn't. Each of us is different. Can I suggest Kris Carr crazy sexy cancer and her crazy sexy diet books. May I also suggest the book Life Over Cancer, The block center program. Has helped me tremendously. I was thinking about this last night. My doctor gave me 30 months in Dec 2013 while waiting for my biopsy results as I had mets to the spine. By July 2014 I was NED. I went through the stages of denial, the bargaining, the grieving, the acceptance. Then I was ok. Then I wasn't as of last month. Anyway what I am saying is I have passed my "expiration date" and am doing ok. Some people live years and years. Do not let the statistics scare you. I have lived to see 2 grandbabies born and worked full time sometimes 70 hour work weeks for the last 2 and a half years. I have just made the decision to take disability at the end of this month. It is hard but I am on the road 20 days plus a month and need to focus on me for a while and I have a great disability policy. If you feel ok and are used to working I would continue if that is what you want to do.
Milaandra - Hoping that you can get some help on the tooth situation.
Carol - glad you got some good scans!!!
Dee - The hardest thing you can do is disagree with a MO but it is your right. If you feel you cannot speak up bring someone with you as an advocate and tell them what to ask,
Babs...ha just my luck!!
Lynne - Prayers your way
Everyone I missed may you have beautiful days ahead this week!
Jamie
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