Bone Mets Thread
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Hello ladies. Im looking for some advice,etc. I have not been determined to have meta but am concerned. Was Stage 3 at diagnosis in sept. 2014. Did chemo, then had bilateral mastectomy in march 15 followed by 32 radiation treatments on my left breast area which concluded lste of June 15. Since then have been on arimedx and after 3 month switched to Aromison since I was her having a lot of joint pain in hands. The past 2 months I started having nagging pain in my ribs & one spot was very tender to the touch. Had a chest X-ray which showed "possible feature vs. lesion on 6th rib". I then had a chest ct scan with contrast & it showed "healing fracture of 6th rib". My oncologist in TX got the report & said "no sign of cancer. She only said if pain doesn't go away in 1 month she would recommend a bone scan. I also have a dull ache in my front lower leg area - sort of like a strained muscle or shin splint (& and I don't run!). Also have some aches in hip area , but I have bursitis & always have had some hip joint pain so that's not "new". Not sure if these pains are AI side effect related or possibly cancer. Wondering why i would suddenly have a rib fracture...don't do anything physical. I know that radiation can weaken the bones & the AI meds don't help bone strength....but these pains are all new.
I now live in s.w, Florida (Naples area) & haven't found an MO yet but feel as though I shouldn't wait another month.
Thoughts, suggestions, etc. I'm not usually an alarmist but I also don't want to poo poo these pains / aches & then later regret that I did. Thank you ladies for any guidance you can give. When I was in treatment I felt "safe" And then when it was all done you feel totally alone & vulnerable again to thisterrible disease!! Hugs to all, Candy
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Welcome Cat- you'll find the women here a great source of information and support.
Linda-sorry to hear your bone scan results. I hope the CT scan shows that things are better than you're thinking they are.
Met with my MO today. She offered me so many options that my head is spinning. First was a study for a drug that's an anti-androgen. I'd have to be off all meds for 2 weeks which isn't bad. The SE's are foggy brain with memory issues and also sight issues. Thus far almost everyone in this study has experienced these SE's. I would have to be at MSKCC for about 1/2 day every other week. Decided this wasn't for me. I work and love to work and need to have my full marbles while there. I can't see the time commitment for a drug with these SE's.
My MO agreed that if possible I should have another biopsy so they can get enough of a sample to do the Impact testing. She is looking into this and also immunotherapy for me. In the meantime, since it takes so long to get those test results back, I DO NOT want to be w/o a therapy so she suggested CMF IV chemo. The SE's are minimal and it would be done every 3 weeks at the end of the day. Once they get the Impact results, they can change my treatment if necessary. She didn't think that I should jump to any of the other IV chemo since the SE's are much more harsh.
Crazy thing is that I just got back my TM's and they did go up-albeit VERY little and are still w/i normal. So Weird!!!!!!
I'm scheduled for CMF next Thursday.
Thoughts? Input?
Babs
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Babs - I think you and your onc have a good plan. CMF may not be a great long term plan, but it can certainly hold things steady while you find a trial that doesn't have those kinds of side effects. Very interested in how things go as I believe you are in good hands ...
>Z<
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Thanks Z
She really is concerned about quality of life for me which I appreciate. If my time on this earth is limited, I want to enjoy it to the fullest while I can.
Babs
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QOL is important for your long term health as well. Let her work a bit to find you something with tolerable side effects.
>Z<
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Candy, I wouldn't wait on this if I were you. It's better to have a scan now while things may still be relatively small and can be treated by radiation then wait until they're bigger. You may have to PUSH your MO on this. Let's hope and pray this is NOT the case and you will be "NED" and it's just AI related.
My sad story is that I had multiple rib fractures and spine mets along with compression fractures that were causing increasing pain (but we did not know that at the time), and my regular dr just poo poo'd it thinking it was just normal aging and arthritis. She REFUSED to give me a scan until it reached crisis proportions. I ended up in emergency and unbelievable pain that I'd never experienced in my life. TMALSS, next day we ended up back in my regular dr's office, w/me in a wheelchair barely able to speak because of the pain. Once again she REFUSED to do a scan, but my husband pressed her, "We're not leaving until you schedule some sort of scan like the ER doctor said to do." The results of my scan revealed extensive mets to bones and multiple organs. Did my dr ever apologize? Hell no. I'm not seeing her anymore, thank God.
Keeping you in prayer that everything is ok.
Lita
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I'm already 3 pages behind again, and so much has happened. Very nice Lynne that you were able to personally meet so many of our sisters! This disease is so unfair and I'm so sorry to hear of progression for many of you, but it sounds like there are good plans in place for tx. Good luck Linda with the CT scan and I'm hoping for good results for you, and Amy, good luck with that darned hip. Lita, truly inexcusable that your dr. would not order you a scan! One would think a dr. would know that level of pain is not just normal aging and indicative of something else. Good on your DH for being your advocate. So glad you kicked her to the curb! Sending you all positive energy, hugs and love. Chelle, beautiful pic of the Bells; love it! Oh, Cat, welcome! Sorry that you've had to join us, but glad you're here!
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Candy,
I don't post often, but your information gave me chills because of its similarity to mine and to Lita's. My FORMER doctor's misdiagnosis of a healing rib fracture cost me several months of progression into spine, sternum, and ribs. PLEASE find a new MO (hopefully one near you in Naples) and get a second opinion as soon as possible. Hopefully, you'll get good news, but even if it is a recurrence, you'll quickly be on the road to treatment.
Please keep us posted on how you're doing. There are a bunch of incredibly intelligent ladies on this thread who can guide and support you through whatever the future holds.
Best wishes to you,
Angela
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Candy: I saw an ER and my primary care physician multiple times over four months of increasingly debilitating back pain. X-rays showed nothing. I was referred for PT and endured 6 sessions of therapy. I repeatedly was told I was fine. I was not. I had three spinal compression fractures and mets in every bone. I was 38 with no history of cancer. I changed jobs during this time so was ineligible for any disability leaves. I wish I had pushed harder.
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Lita, Angela & Bluefrog76 - thank you ever so much for your feedback. I took your advice & called to schedule follow up with a new Florida oncologist at the moffitt cancer center in Tampa. My chemo nurse in TX called her old boss in FL & got me 2 recommendations for MOs who specialize in breast cancer. I haven't found anyone locally I need Naples that specializes & i would Rather drive two hours and go to someone who is up on all the latest treatments etc. now I just have to wait for an appointment. But I am listening to you ladies and a to my body. These don't feel like the normal joint pains I was experiencing when I first went on Aromisin. I will definitely push hard to get all the testing possible to find out what these pains are being caused by. Thank you again for your support. I have not been visiting many boards because things were going so well until now. And as much as I hate the thought that a recurrence has already happened so soon, it is better to know sooner rather than later. Hugs to all Candy
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anyone have a great MO they can recommend In the naples, Tampa, FL area?? Thanks, candy
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OK, Bone Mets Ladies, I have a new question.
My wife, KD, recently had a very successful spinal fusion surgery on September 12th, where they stabilized her C4 - T4 vertebrae with rods and screws. We just had a follow-up appointment on Wednesday, and she was "CLEARED" for all normal activities with the exception of lifting more than 10 pounds, or strenuous physical exertion. Happy Dance!!!!
Well, we just got a call from a service provider who said that he was on the way to deliver an "Electronic Bone Growth Stimulator" for KD to use at the request of her Neurosurgeon. I am assuming that this device works just like a TENS unit.
My question is whether any of you ladies were prescribed one of these devices? I have a real concern about how the electronic stimulation will affect the cancer cells that are up and down KD's spine.
Thanks and (((HUGS))) to all,
Louis
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babs. Sorry to hear of orogression. Sounds like your mo has some interesting new tx ideas.
LindaE. Darn. Sorry to hear of your scans. Hoping your newest scans give more clearer understanding. No wonder you've been hurting. At least they can do something to fix those fractures
Caught up on all but can't remember everything to respond to all. Lots if people gave a lot going on now , it seems. Yuck.
I back in the hospital. Got here yesterday. Treating me for sepsis. Really surprised by this illness because I have been doing great !! Oh well. A bump in the road. I still feel extremely confident that X has been working for me. Still have felt better then in the last three years. I think about how many times I just wanted to quit and give up. Never expected it would get better. So glad I didn't give up. As soon as I get out of here u am back to living, I mean really enjoying life again.
Hugs to all
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KD-s-Husband, when I was in physio for bone mets related pain the therapist told me I could not use the TENS machine as it would stimulate the cancer cells. I'm not certain if this is true but I followed her advice. Maybe a call to your wife's MO would clarify things. Wishing you the best and glad her surgery was successful!
Patty, you are just a ray of sunshine, your positivity is amazing and I admire your spirit. I am so sorry you're back in the hospital and being treated for sepsis but I admire how you view it as a bump in the road. You will be back to living and enjoying life again in no time. Sending you healing (((hugs)))
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hello All,
At first, sorry for my english.
I need your advice. I had got mets to bones - spine, ribs, bottom. So I take tamoxifen+zometa (I'm after ovarian ablation). Last my scan bone shows a little progress, it means mets to ribs, spine, bottom, scapula, breastbone, collarbone...there're no mets to organs.
And my question is, what should I get? I'm from Poland and few medicines are not refund, like denosumab or palbociclib. Should I switch/change Tamoxifen to Letrozol? Change zometa to pamidronian?? Hmmm?
Hugs to All!
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Beatrix,
We just wanted to offer you a warm welcome to our Community! We're sure someone will be along shortly to offer advice.
Thanks for posting and we look forward to hearing more from you!
--The Mods
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Beatrix, a warm welcome to you on this tread. Your English is very good!
I'm sorry about your recent progression. There is no need to change Zometa to denosumab (Xgeva) or a pamidronate. Xgeva is a more recent and expensive medication but essentially does the same job on bones just like pamidronate. If there is a need for a treatment change, your doctor would likely change to an aromatase inhibitor such as Letrozole (Femara) or Anastrozole (Arimidex). You may also ask your doctor about clinical trials with palbociclib (Ibrance). Best of luck to you and please keep us posted.
Patty - darn bump in the road! Hope you get of there quickly and in top shape.
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Patty, hope you get sprung from that hospital soon! Glad to hear that you are still feeling well and enjoying life!
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Hi,
Linda thanks a lot! This week I have appoitment with my Onc, we'll see what she propose me. Then I let you know:)
Yesterday I started read your discussions, view your treatment, exams and now I know why in my country still is high level of mortality:( No access to oncologists, good oncologists of course, hard access to CAT scan etc patient must push doctors to get referral, a lot of medicines are not refund, and I notice different way of treatment. It's very sad I and get upset me
Ok, enough complaining:) See you soon and I back to read this forum:)
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Beatrix, you have to push for yourself. Reading through here may be discouraging but will give you power and knowledge to ask questions so that you get the best possible care. Some meds here are approved by Health Canada but not eligible for refunds or it takes much longer to have access to the medication than in the USA. In Quebec where I live, it's hard to find a doc, but once we are in the system it goes well but I always have to follow up on things. A lot of budget cuts in the health system here. If I may suggest something, keep copies of all your reports to be on top of things or if you need a second opinion at some point.
Have a good week-end!
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Lemondrop: The ultimate catch 22, they'll pay to treat you for what the scan showed, but deny coverage for the scan as being un-necessary! I wonder what universe they are from. I hope you have successfully fought them for this.
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Beatrix - There are many many trials in Poland because your country has actively recruited pharmaceutical companies and made it easy for them to work there. Your lovely country is a great place to do clinical trials so you have lots of options. Here is a search of active trials for breast cancer
https://clinicaltrials.gov/ct2/results?term=breast...
I am sure I saw a palbociclib trial in Poland at one time. I don't see any palbociclib trials in this quick search I just did. However all the drugs ending in "ib" like ribociclib are kinase inhibitors like palbociclib. Ribociclib in particular has been doing well in trials. It is not FDA approved here, but the preliminary results show it will be as good or better than palbociclib (Ibrance). From a quick glance at the available trials, I would try to get into the phase III Monaleesa-3 trial as soon as you can.
Drugs ending in "ab" are immunotherapy drugs, often checkpoint inhibitors. They are a little more experimental for breast cancer. I would certainly try a kinase inhbitor first. But keep an eye on those options as we are seeing some spectacular results with checkpoint inhibitors.
>Z<
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Hello
I'm about to start Afinitor with Aromasin within two weeks...I have been reading so many negitive side effects on Afinitor and was wondering how many are currently using this drug and the results?? There really is not a lot of CURRENT information on Internet regarding this drug except horrible side effects from 2013?
Any remarks with using this drug and how long it did work using this drug?
Thanks so much for your help!!!
Also posted this on Imflammatory Breast Cancer
Kimba
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For Babs--there is also a CMF thread for us women specifically on combinations of CM5Fu. (CMF). It is an older chemo, that has been around for awhile. The side effects can be bad, but aren't as bad as other chemo's I've done over the last three years. I had a 100 point drop in my tumor marker the first CMF Infusion, and about 35-40 each infusion after. So give it a chance. Every MO has a different administration. Good luck. The board is "CMF Question".
God bless you each on the road you are on. Prayers for pain free peace and happiness.
Shelley
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Shelly. The tm drop is good news
Wishing I could remember more what people said or at least have a pen here for notes. Why do I always forget a pen in my hospital bag. Also means I can't fill out my menu but I guess since I am in clear liquids it doesn't really matter now , just dreaming of real food choices. The hospital actually had some decent food.
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Linda:
"Reading through here may be discouraging but will give you power and knowledge to ask questions so that you get the best possible care"
You're right, I think the same. I bought on website like eBay some books, guidelines for doctors, professional reading etc. Of course, unfortunately significant medical news or info or way of treatment are in English or only with doctor access:) Must cope with that LOL
Zarovkayeah, sometimes I view some clinical trials especially in my hospital, but I really, really scare that I will get placebo:) Now I also don't see any trial for me. For HER2 positive is a lot.
Thanks Girls!
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I'm currently on the moneleesa 3 trial it's using a sister drug to Ibrance called ribociclib sorry I for sure spelled that wrong. Anyway I'm thinking I'm getting the placebo because my blood levels are all still good . This trial also uses Faslodex which I am getting because it's in shot form in the hips. At my last injection the attending nurse told me I was probably very lucky not to be getting the drug. When I asked why? She said because it kills your bone marrow 😳
Wendy
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Patty,
When do you get to eat real food? And, when do you get to go home???
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Kapution. Not sure. Waiting on dr to come by to ask both questions. I am so hungry. That's a good sign, right
Wendy never heard of that trial. I guess even if you are getting the placebo that the Falsodex is working to kill those cancer cells. I am always amazed at how many new tx are on the horizon. Gives me hope not only for myself and fellow bco sisters but those who come along after us.
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