Bone Mets Thread
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Rhollo, yes, that initial co-pay quote can be a shocker! But as long as you have insurance, Pfizer's Co-Pay One plan should cover all except $10 of your co-pay. Your pharmacy or oncologist can submit the form for you if you ask them to. If they're not helpful, you can do it yourself by simply answering a few questions here http://pfizerrxpathways.com/?step=2 . Then give the pharmacy the i.d. number Pfizer gives you. That should bring your co-pay down to $10.
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Rhollo,
Welcome to Breastcancer.org! As you can already see our Community is an incredibly helpful, supportive resource!
In addition to the excellent advice shared above, you may want to check out the main Breastcancer.org site's section on Paying for Your Care for some more tips to help lower medicine costs.
We hope this helps! Please let us know how you make out.
--The Mods
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Thanks Deanna. I remember you saying what a good thing your femur and hip surgery was. Amazing!
I've had ablation and vertoblasty in the lumbar region (all except the collapsed one) and believe that has been helpful. The thoracic area may need a bit of rads.
I was just wondering what else can be done in the spine. My activity choices are fairly limited. Exercise walking has been my best option for a while. Oh well, as we know, we can be in kind of rough shape for a while, then have a treatment that helps a bunch and get moving again!!
Onward! In a better mood than I was this morning. :-)
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Help! I'm new here to the bone mets thread, wondering if I have bone mets. I was diagnosed with brain mets in July. All other scans, CT, Bone scan, were clear from metastatic disease. I just had my first follow up scans from 6 weeks ago. I've been on a clinical trial for Abemaciclib in order to treat brain mets for 6 weeks now. I was told CT was clean and brain MRI was stable. Great! However today I read my CT report and it mentioned something I've never read before- and I've read every scan report I have ever had. It stated "stable scattered sclerotic change of the sternum". When I questioned my onc about this. She basically said there was no way to know what it was. Kinda brushed it off. But o find it suspicious that after 6 weeks on a drug l know to be effective for systemic mets I have these areas of healing on my sternum. So sad right now...not to mention confused.
Does this sound like anything you all have experienced?
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Welcome, Elizabeth, although I'm so sorry you have reason to be here. That confusing line is just that -- confusing -- especially if it wasn't mentioned as recently as July. One thing I've learned is that odd observations do tend to pop up on scan reports, never to be mentioned again. That can happen for a number of reasons, including the basic fact that radiology isn't always black & white, and what one radiologist sees as not worth mentioning, another one calls out the next time, and vice versa. I think many of us here have had that happen. However, in an ideal situation, I would have preferred your onc tell you that she would ask the radiologist about it and have him recheck to see if it was perhaps there on your last scan, and you might still ask her to do that. I'm guessing her lack of concern is that of the two areas (assuming you do have some vestiges of bone mets healing going on), she is probably more concerned about the brain mets. So if I were you, I would probably bring it up again, asking her if the radiologist could review both your current and July scans, to help figure out if there truly is something there that wasn't mentioned earlier. And if you're not happy with the response, your next option would be to take your images to another facility for a second opinion.
Hope this helps, and try not to worry. I know it's upsetting, but there's a good chance it's nothing, and if it is something, it sounds like it's healing. Deanna
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thanks for the thoughtful response Deanna.
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Hi to all-
I took a BCO break and trying to catch up here-
Amy- my heart sank reading your post and after reading that I quick forwarded to current and just skimmed posts. I hate this disease so much. I know how you feel.
With that being said, my bone scan showed abnormal uptake in lower ribs, SI joint and skull. All new. CT scan says suspicious for liver mets so I have MRI scheduled for Monday and meeting with MO on Wednesday. My MO is out on maternity leave, the one that replaced her is out on medical emergency so I saw a MO that does mainly research at Dana today. Love him wish I could keep him but he only sees a handful of people. His name is Dr Stover. He said after MRI results and scan studies, I would probably do a trial or just falsodex. But needs MRI first. Ibrance at 75 for two weeks on two off didn't work for me. I could not tolerate the higher doses. The funny thing is I have felt no pain and hopefully maybe something new is going to give me what I want. If they switch me to falsodex only that would be strange. But that's what the MO today suggested but will review with tumor board after MRI. I see another MO on Wednesday. I am going to get to meet all Dana Farber MO at this rate!!
To everyone that I missed or didn't mention. I will when I get done with my denial miserable mood.
Hugs Carol0 -
Oh, Carol- I'm so sorry to hear this. I hope you get clear information and a new plan that serves you for a long time!
I also went from Ibrance and Letrozol to Faslodex only (with xgeva).
((Hugs)) and prayers for you!!
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Carol, we talked earlier away from BCO, so you already know my concern for your scan results, as well as my feelings about what great hands you're in -- both from a medical point of view, as well as the encouraging support you got from Dr. Stover. I just took a minute to pull up some info about him, and boy is it impressive! Cum laude Princeton; Honor Medical Society at Vanderbilt Med; PhD Harvard Med School. The website for a bc non-profit that recently gave him a research grant contained this information about the work he's doing...
"The host immune system is critical in the control and elimination of tumors in many cancer types. In breast cancer, tumor infiltrating immune cells have been associated with both response to chemotherapy and overall outcome for patients. Understanding what immune cell populations infiltrate tumors may help guide which patients are likely to benefit from chemotherapy and provide targets to improve the efficacy of chemo- and other therapies. Within breast cancer, estrogen receptor (ER)-positive breast cancers comprise the majority of all breast cancers but the role of immune cells remains less well-understood relative to other breast cancer subtypes.
We developed evidence that immune cells play a critical role in response to chemotherapy in a subset of patients with ER-positive breast cancers. As a Terri Brodeur Fellow, Dr. Stover will integrate large, publicly available datasets to investigate immune cell signatures in thousands of breast tumors. In parallel, he will work to understand immune cell subsets in breast cancer biopsies of patients on clinical trials of chemotherapy and immune-directed therapies. Ultimately, his goal is to develop biologically rational, immune-based biomarkers to guide therapy, including chemotherapy and immune-directed therapies."
You are so fortunate to have seen him today. I hope he will continue to play a role in your care!
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Carol so sorry to hear of your progression. I'm hoping your new plan works for you for a VERY long time! Sounds like you're in wonderful hands at Dana!
Bab
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Giving virtual hugs to you this morning Carol. I'm sorry you're dealing with progression too BUT thank you for taking time from your own sadness to reach out and comfort me. It means the world.
Amy
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Carol, so sorry to hear of your recent progression! Hope you get some good answers and a new treatment plan soon! Glad you have such a great doctor on your team!
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Aw Carol, so very sorry to hear this. I am quite impressed with Dr. Stover. You are in highly capable hands with him. I hope the MRI will show benign liver lesions. Gosh the waiting must be hard on you. Fas is a very powerful and effective drug even when used alone. You're in my thoughts and prayers. BIG hugs to you.
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Oh Carol I"m sorry you are having progression and I remain incredibly hopeful that your amazing team can get right on it. So many hugs coming your way!
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hi Carol
Just wanted to say I am in your corner sending positive thoughts. I am just wondering is anyone talking biopsy to see if it is still er positive?
Peace
Mary
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Reading through all these posts warms my heart. Carol you are always there for every one of us and we care deeply about your welfare. This hit for you is a hit for us all and it makes me so mad but again your grace is uplifting. I know nothing about your doctors as I'm up in Canada but I am reassured from all the posts that you are in the best hands. This makes me glad and I know you will get the treatment you need to beat this beast back down. We got this🤗 big old hug from Canada.
Wendy
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carol. Sorry to hear of your progression. Sounds like you have a great team to help you see all your options. Great to see you. You've been. Missed
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Carol- I'm so sorry to hear about your progression. Like everyone else said......it sounds like you are in good hands ((hugs))!!
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Carol, I'm so sorry to hear of your progression and am thinking of you today. Hoping your MRI goes well.
Mary K, I hope you are feeling better and not quite so overwhelmed by all of this. I know it took me a few weeks to get past that adrenaline kick.
Deanna, I have some serious dental work that has to be done, but here is my problem. I have very little funds to get that accomplished. I'm having serious rib pain for the last week or so and probably need to get on that Xgeva asap, but can't because of the dental. I have three teeth in particular, one I Think can have a cap, one that needs pulled and another that probably needs a crown (which is what I meant on the first one, not a cap). I just don't have the money... I also have one tooth where they did a root canal and some of the liquid went through the bottom of my tooth and is sitting in the space between it and the bone. I'm wondering if that needs to come out before I start Xgeva. I fear it will cause problems later on. I'm in a very small town and I dont' have any idea how much my dentist knows about all of this,b ut am going to go talk to him tomorrow.
Rhollo, I hope you found some help with the cost of your Ibrance. That is a great fear of mine, not being able to afford the meds.
I've been having some serious rib pain, it hurts to breath very deep, but don't want to go back to the onc until I can talk to my dentist. I dont' think my onc will do radiation, because I was diagnosed with Lupus in 1999. Lupus patients don't heal from radiation, which is what he told me years ago. So not sure what can be done about it. I also have a problem with ibuprofen, as I have colitis (sorry TMI), and ibuprofen or Advil or any of those cause it to flare terribly. I'm in a quandry. Still taking the Femera. At this point I have no SE's that I know of from it, and I hope that it works. Anyone else have Femera alone that actually caused them to be NED< or at least slowed this beast down?
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Gracie, if you are within a reasonable drive of a major university teaching hospital, you might check and see if their dental school has clinic hours. It can be a great way to get your care at a greatly reduced rate. I ended up going to someone (a dental professor w/a specialty in ONJ) within that sort of clinic setting @ UCLA, and I was very impressed with the clinic and amazed at how inexpensive my tx was compared to what I'd already paid an oral surgeon locally for an extraction a few months earlier.
In our area (Southern California), many people make a day trip to Algodones, Mexico for dental work. The cost savings is hard to believe. I haven't done it personally, but I know a lot of people (including those who could afford care in the US) have done it and rave about it. I don't know where you live, but if you know anyone in Southern CA or AZ, it might be something to look into. I can get specific clinic names for you -- clean, reputable places with US docs who prefer the less hassle of practicing there.
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Lita - count me in as someone doing well on Femara alone since dx in Nov 2013. I've had a mix of very slow progression and some healing with minimal SEs.
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waving hi
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Hey Bone Metsters, I am liver/lung metster. But spine MRI the other day indicated abnormalities in my bone marrow. Tomorrow I have PET to see if mets showing up inside the bones. My question for all of you, have you heard of anyone getting marrow mets without having bone mets? My symptoms have been moving severe pain throughout my hips, sacrum, ribs etc. Thanks for any insight. Eva
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Hi All
I'm celebrating my 45 th wedding anniversary today. So happy I'm still here. We need to celebrate every milestone !!!! Having dinner with my DD and DH. Doesn't get much better than that! DD boyfriend from Paris texted us anniversary wishes. So sweet
Babs
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Happy Anniversay Babs!! Here's to many more!! Congrats!!
Waving back Patty- I'm in the middle of the p'od phase. Like I want to spit at cancer
- I swear I'm going to kick its butt to curb and it will be afraid to mess with me ever again. Progression is like getting the diagnosis all over again. But I have been singing "Eye of the Tiger" all day. Hope everyone could hear me ROAR-
Hugs Carol
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Babs, Happy 45th anniversary. What a wonderful occasion to celebrate. Enjoy your special dinner.
Patty, Hi there. It is always good to hear from you. I hope you are feeling better.
Carol, I thought I heard some roaring today. It shook my house! I do like your attitude, and I believe that you WILL kick cancer's butt to the curb. You are strong and determined.
We had a family get-together here on Saturday. It was wonderful to have all our sons, daughters-in-law and grandchildren together for an entire day. It is not easy to find a date that is good for everyone. My DH and I relaxed and watched the kids play all kinds of games and swim in the pool. I did play volleyball with my grandsons, but I think that the net is a lot higher than it was in my younger days. I ate all sorts of food that I usually avoid, and it was all delicious. I didn't think about my progression or mbc all day.
Have a good night.
Lynn
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lynn. What a great day Saturday must have been. Making good memories for your family. Yea !
Babs. Happy anniversary !! Wow. That's a long time to be together. Great job !
Carol. Roar on girl !!!!!! I can almost hear cancer packing its back to get away from you. Love your fierce attitude!!!!
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Happy 45th Anniversary, Babs! Special celebrations are great medicine! May there be many, many more for you and for all of us!
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Happy Anniversary, Babs. How special!
Lynn, it is so special to have everyone together. Happy for you!
Hi Patti!
Carol, you've been on my mind today. Good to hear you roar!
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hi kapton
Trying to sleep but wide awake. Anyone else up?
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