Bone Mets Thread

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Comments

  • LindaE54
    LindaE54 Member Posts: 1,379
    edited November 2016

    Wishing you both Wendy and Lita good results.

  • jensgotthis
    jensgotthis Member Posts: 673
    edited November 2016

    we'll be with you Wendy and Lita! Hoping for good results for you both

  • babs6287
    babs6287 Member Posts: 1,619
    edited November 2016

    Lita. Hoping for good results for you too!

    Bab

  • momallthetime
    momallthetime Member Posts: 1,375
    edited November 2016

    I did send a request via email. I sent it to main RO(chief), NP and administrative secr. They all know what's going on with each patient anyway, so I might as well just cc everyone. I did not wanna deal with one person's mood over the phone, so this is the best way. I wrote that I had always gotten the records, it's important to keep the paperwork, just pretty much the facts, that "the" secretary said the patients don't get that info. I specified date of treatments etc… Was not nasty but to the point. I hightlighted how the Chief and NP said no problem, but at the other level that's what we encountered.

    Anyway, we got a response back almost immediately, saying this is unacceptable and asking if so and so is the one we had a problem with. I answered back in the affirmative, and that I hated to name her. Anyway, RO also answered that she was horrified. I don't have the paperwork yet, she just finished on Friday, but I know they will send. And so it goes….She is not a bad person, just one of those that are stuck in 1850…

    Wendy fingers and body crossed!! Lita hope Xeloda is doing it's job, best wishes

    Babs hope they are really doing a thorough investigation… so difficult the waiting…

    Jen thank you so much for your pm with info, there is sooo much I don't know.

    Btw, would anyone know of a site or thread somewhere, that is similar to BCO for prostate cancer? TIA

  • cjanet
    cjanet Member Posts: 288
    edited November 2016

    hi ladies! Still alive. Tons of liver pain on disability, but chugging along. We are looking at hiring help as we raised some money for it. I don't think I have much more time but wanted to know where I might find info on Linda Lou Bachelor? I see her on FB But not sure she's here anymore. I know I disappeared but I am on FB a lot on the private mets page, the closed metastatic breast cancer page, thriving with metastatic (private) breast cancer page (almost the same), thriving w Breast Cancer Toward the End (requires participation!), and Stage IV TNBC, a smaller group. I am also active on FB in general as Cristina Tebolt! I don't want you guys to think I've died yet!

  • dlb823
    dlb823 Member Posts: 2,701
    edited November 2016

    Hi, Cristina! There are two Linda Lou's. You can reach "our" LindaLou via PM here if she doesn't pop on and see your message quickly. https://community.breastcancer.org/member/61932/pr...

    The LindaLou who posts in FB mbc groups (Batchelor-Ballew) is a different Linda Lou. I was confused at first too.

    Thinking of you today, Wendy! Big hugs & prayers for an easy CT and great results!

    Lita, I know yours is on Wednesday. I'll be thinking the same for you that day!

    No matter what the outcome, I will be so glad when tomorrow is over. The hostile political environment cannot be good for any of us -- at least I know at times it's gotten my blood pressure amped up! (And please, no political thoughts. This was just a comment on looking forward all the nasty diatribe hopefully going away.)

    MomATT, glad you're getting the records you wanted. Hate it when a doc's office adds to our stress level! It's not right!

    I hope everyone has a great week!

  • Lita57
    Lita57 Member Posts: 2,338
    edited November 2016

    This is what Sofia thinks about all this election crap....a big raspberry to BOTH candidates. She and I can't wait for it to be all over.

    image

  • Lindalou
    Lindalou Member Posts: 598
    edited November 2016

    Hi Cristina!

    Good to see you pop in. It sure sounds like it is rough going for you, but sounds like you have found some great support on Facebook. As Deanna pointed out, I'm not the Linda Lou you are looking for, but glad she gave you the info for the correct one. I wish you well as you move forward with your treatment. Are you no longer working? I know how hard that was getting for you. Please keep us updated here on bco bone mets too.

    Thinking of those of you who are having scans this week or receiving results.


  • Vevs
    Vevs Member Posts: 81
    edited November 2016

    Lita the photo of your dog is so cute, we are watching the election in the US with slight disbelief, mind you our government is rather in disarray at the moment as well 😃

  • PattyPeppermint
    PattyPeppermint Member Posts: 8,950
    edited November 2016

    lita. Love your dog pic. It says it all

    Christina. Glad to see you

    I too will be glad when election is over.

  • momallthetime
    momallthetime Member Posts: 1,375
    edited November 2016

    Cristina so nice to hear from you. To have help in the house, is so important. It will allow you to concentrate on the more important issues. Which treatment are you on? Are you still at Sloan? When you have a chance let us know what's up.


  • babs6287
    babs6287 Member Posts: 1,619
    edited November 2016

    Hi Cristina I was thinking about you this weekend and was going to pm you. Are you in treatment. I know you had lots of pain. Is it any better now?

    Lita the picture says it all!

    Babs

  • Wendy3
    Wendy3 Member Posts: 872
    edited November 2016

    Christina great to hear from you , though I am sorry to hear you are still in such pain that's bites. I love your avatar your children are beautiful. Having help around the house must be really nice , picking up after little children can be a Herculean task sometimes. I'm on a couple groups on Facebook to " curing breast cancer alternatively" and "fighting breast cancer with cannibus" I love th exchange of ideas not unlike this thread.

    Deanna I'm with you I'll be very happy when your guys election is done . They are having parties in Vancouver at bars kind of treating it all like the finally of a reality show which it kind of is. All this time I was hoping for a third candidate of substance for you all ...unfortunately it didn't happen.

    Lita your dog is adorable.

    So now I wait could take a week to get the results from the ct scan from today so the worst part.

    Take care all big hugs to everyone.

    Wend

  • iwrite
    iwrite Member Posts: 746
    edited November 2016

    Sending hugs to everyone getting scans or waiting for results! So happy to hear the good results and sending along heartfelt prayers when news isn't good.

    Thank you to Rosevalley and Stephanie today as you both have been so committed to voting in this election. Just beginning to understand what it is like to feel so ill, but determined to finish important business. You are such an inspiration on how to live with MBC. Thanks for the good election wishes from folks around the globe! If Canada and Mexico are full tomorrow, Wales and Scotland are next on my list :-)

    So...an update...The visit to Santa Fe with my daughters was wonderful. I had meds for altitude and visited the oxygen bar for two days. No migraine at altitude for the first time since dx!!! Then back to the real world.

    I met my new oncologists last week. (My primary is in Chicago and back up in Central Illinois.) Both seem nice, but I discovered that my new primary doesn't prescribe for anything not directly related to the cancer...no anxiety meds, no altitude sickness meds for travel...I'm not even sure she will prescribe pain meds when the time comes. Her instructions were to do this with my PCP...although the PCP knows nothing about cancer and I've seen her twice in a decade. WTH???? MO also didn't like the anti anxiety meds I had been prescribed by her predecessor and left the impression that since I'd had this dx for a year I should be over my anxiety...yep...with a average lifespan with this diagnosis of three years, my anxiety decreases over time, not!

    She moved my upcoming scans back a month to the end of December although I've been experiencing more symptoms. (Since the blood work looked good she said who needs scanxiety or bad news during the holidays???) She did an LDH test which was new. Has anyone else had this test as an indicator?

    I did ask about palliative care and she said they have an affiliated palliative care team on site, but that is a completely separate set of appointments to make. It's time to discuss pain meds. There is an oncology nutritionist to see, which I'm hoping is a good resource! The good news is that the MO doesn't think nutrition is a bunch of malarky. So...now there are five sets of doctors...this is not only a pain (on top of some constant real pain), but it's a full time job. It's hard to imagine how this will work out as progression moves into the picture.

    This reinforced the conclusion of others here that we must be our own advocate because oftentimes the doctors don't really know your case or have the time to actually provide care to you. (At $500 per appointment and $7,500 average per scan it seems like they could care at least a little.)

    So...I'm focusing on my regular meds and my own complementary program to still feel some degree of control.

    I've been using the Life Over Cancer diet for the past two months. I don't miss meat or dairy, but feel there may be too many carbs and soy products to be ideal for ER PR+ MBC. I've been experiencing more back pain, headaches and some D as time goes on with this protocol. So, I'm switching to a no carbs ketogenic diet this week. I know my guts feel better without dairy and grains and perhaps this will help reduce sugars in my system. My husband doesn't complain, but he will be glad to have meat as a main course again. I read about Hyperbaric Oxygen therapy and may consider it once the ketogenic diet takes effect.

    There really isn't anyone outside this group who understands what we are experiencing. It is hard to talk about it with anyone else as they find it disturbing. (Plus, it's been a year and I still look normal so obviously it isn't that serious.) Most of what I know about treatment and hope comes from this thread, so thank you!

    Hang in there ladies! Thanks for letting me rant a bit :-/

  • Lita57
    Lita57 Member Posts: 2,338
    edited November 2016

    Iwrite - I'm shocked that your onc won't let you continue on the anti-anxiety meds. If anything, as we get closer to "the end," we SHOULD be on Zoloft, Xanax. etc.! I mean, GEES! Some of us may only have months as opposed to years.

    Take care, and good luck navigating thru this new stuff.

    L


  • chico
    chico Member Posts: 198
    edited November 2016

    Hi Everyone. I have bone mets to spine and ribs. I have been on Palbociclib & Letrozole for a month and Denosumab for 2 months. I also use co codamol and ibuprofen for pain. My problem is that although general back pain is manageable rib pain no better. One of the ribs has a tumour attached which touches a nerve and I had 5 doses of radio to this area a couple of months ago. I was hoping that if the Palbo & Letz are working that the pain would be a little better. Please could any long term users of this combo advise if pain should be subsiding. Feel so self centred posting this when everyone on this site is suffering. Chico x

  • auroaya
    auroaya Member Posts: 784
    edited November 2016

    Hello everyone and sending good vibes to those experiencing s anxiety and/or progression. Myself I started Xeloda two weeks ago and my left foot sole is on fire! I'm using the cream that came with the Xeloda but it only cools it off for a few minutes and walking Is painful. Yesterday I had a CT without contrast of the chest area and I just got a call that there maybe some new nodules in the liver if that's the case that would be my first progression to internal organs. ( I have skin and bone mets until now).

    I don't see my oncologist till nov 30th which is fine because I want to give Xeloda time to work.

    Any prayers welcome.

    Aurora


  • LindaE54
    LindaE54 Member Posts: 1,379
    edited November 2016

    Hi Chico and welcome to this thread but sorry you have to join us. You need to give yourself more time before you see a change in pain with your tx. Radiotherapy can cause a pain flare for some weeks before you feel better. If you feel you don't have a comfortable level of pain, don't hesitate to speak to your MO to change or add pain meds. Wishing you the very best!

    Iwrite - I'm appalled your doc would say such a thing! We know what we need.

  • chico
    chico Member Posts: 198
    edited November 2016

    Thank you LindaE54 for posting back to me. I suppose I worry meds not working - yes I know silly at this stage but it took 3 months to get started on treatment so naturally/stupidly? I fear progression! Chico xx

  • lulubee
    lulubee Member Posts: 903
    edited November 2016

    Iwrite, I've been to an oxygen bar in Santa Fe! Was it the one right off the Plaza, just a block west?



  • Kaption
    Kaption Member Posts: 2,934
    edited November 2016

    Hi All,

    I have been trying to take a month off from bc as we are in Florida for the month of Nove. But, last night I developed a numb chin-just the right half. I found a numb chin thread on here, but no one has posted in a couple of years. I plan to call my MO tomorrow. Has anyone else experienced this?

    Thanks so much. My best to all. I haven't had the time to read everything and comment on all. I really thought I coul take an actual break!!


  • iwrite
    iwrite Member Posts: 746
    edited November 2016

    kaption- Hope the chin thing is temporary so you can enjoy your month away!!

    Lulu bee- I saw that one but there was one at our hotel so I went there instead. I'm a believer!

    Chico- Things should improve and asking for meds to bridge you through is perfectly ok!!

    Thanks ladies! I have felt so down since that appt...this helps confirm that it was a bit odd.

  • Lita57
    Lita57 Member Posts: 2,338
    edited November 2016

    Kaption, I had numb chin, left side. It happened the day after my first zometa infusion. It only lasted part of the day and went away. Are you on anything new?

    Hope it resolves.

  • zarovka
    zarovka Member Posts: 2,959
    edited November 2016

    Lwrite - thanks for posting your thoughts. I relate. To everything you experience.The complementary treatments and the lifestyle changes do allow me to retain a sense of control while dealing with the Standard of Care. It's easy to feel trapped and out of control in the medical system. I often feel odd and depressed even after "good" visits. But we have options and important avenues to pursue without them.

    My complementary doc is very excited about Hyperbaric Oxygen treatment. I am working through some other modalities right now, but it looks interesting. Let me know how it goes.

    Hi Chico - We benefit from hearing about how we are all REALLY doing. This is one place we don't have to adjust our thoughts for the audience. I am glad you joined us. Palbociclib takes a while to work, particularly on bone mets. Look for a response in 6-12 months. One BIG issue is that the letrozol can cause muscle and joint pain. The good news its not necessarily the cancer progressing. The bad news ... aches in weird places messing with you head.

    >Z<

  • momallthetime
    momallthetime Member Posts: 1,375
    edited November 2016

    Aurora from what I have been gathering Xeloda does work well for Liver mets. So if that's the case, let's hope for the bet.

    Kathryn love that paragraph about anxiety. I do believe that the people that think and talk like that drink margaritas all day, and never had even needed a stitch for a cut. "They" think it will never happen to them, these things only happen to the "unfortunates". Sooo beyond the line!

    Kathryn, your frustration is very real. You should know I and Dani are always talking about her little ones, and her business and all she has to do, to try to make these people feel something, and know, that there is life for all of us outside the grey rooms where we sit to wait an hour and half for those "desirables" to come and give SOME advice. Yeah, I am bit cynical. I am working this system for sooo long.

    Kathryn, I don't know when your last set of scans were taken, but at least for Dani, it's been every 8 weeks, ok she hasn't responded well to treatments. But one of the reasons for these scans was the pain, and that's how they did the scans, and it showed things were progressing and then they changed treatment course. This time is gonna be the first time, she will have it like almost 12 wks out, bcs in the interim she started a 3rd treatment along the other 2 and they wanna see how it works. I even asked yesterday Onco if it's feasible to get an answer already for the newest tx to show it's value, bcs as much as I like scans, we wanna do the right thing. Her answer was: I like to catch things before they get worse. Kathryn, maybe and I am saying maybe it you say that you really want it before, then maybe she would comply. Having anxiety not knowing what's going on OVER the Holidays, how helpful is that? And then between you and me, decisions could start to delay because everyone has a day off here and there. I am just concerned if you are in that kind of pain that you need serious meds, waiting like 2 months is??? I don't' know….

    Isn't everyone on anti-anxiety drugs? Are you kidding me? I was at a dinner, the conversation was: WHICH meds are you on? NOT, ARE you on something?

  • iwrite
    iwrite Member Posts: 746
    edited November 2016

    LOL Momallthetime! Which drugs are we not taking is truly the question!

    Actually today I feel sick and need the anxiety meds for a whole new reason...DH and I were thinking about moving to CO and last night pushed us both into anxiety and discussions of off grid living. I deleted FB this morning, can't open the newspaper and cannot go to a party tonight that a long time friend is having due to the crowd.

    For some reason I didn't cry after my diagnosis, but have been weepy all morning about the future of our nation, my grandchildren (and my 401K).

    The only good news that came out of last night for me was that the DWD proposition 106 passed in CO. Really...that's the good news? If there are good doctors in Colorado Springs it may take care of other problems as well.

    Hope everyone is having a better day!!!


  • chico
    chico Member Posts: 198
    edited November 2016

    Thanks Zarovka. I saw the onc today who said exactly the same thing. Also I have another blood test on Monday when hopefully numbers will have risen and I can return to taking the drug. Have to say otherwise I feel very well and have reasonable energy - hope I am able to make the same statement in 6 months time! Chico xx

  • momallthetime
    momallthetime Member Posts: 1,375
    edited November 2016

    Kathryn hope you feel better soon.

    Kaption I reread and saw your post now. So sorry you are feeling this numbness. Sometimes, just sometimes this could have something to do with a nerve from the skull/brain pressing on a nerve. My daughter had this, she finally had Rads to the area, they kept postponing it, thinking it will get better with treatments, and for the first time in awhile she is feeling better. Definitely worth checking it out, maybe you could ask Onco for and MRI w/wo contrast of the Brain? It will show all the calvarial etc...very reasonable request. Hope you get some answers soon


  • Kaption
    Kaption Member Posts: 2,934
    edited November 2016

    Thanks momall. We are trying to have a month off of cancer at the beach. But, this morning my chin was still numb so I contacted my MO at home. She said to go to the ER just to be careful. We found a wonderful hospital here, got a CT scan and saw nothing scary. ER doc contacted MO, so I was released and just told to tell them if it gets worse or I get other symptoms. On we go. Always something!

    You and Dani are always in my prayers.

    Thinking of you all. What a wonderful resource we all have.


  • Lita57
    Lita57 Member Posts: 2,338
    edited November 2016

    Kaption: Hope it goes away soon.

    Iwrite: I share your concern. I am grieving over this debacle of an election, but I'm "trying" to be civil about it. Looks like we're going to have to FIGHT THE POWER like we did in the 60s and 70s. Very sad. No time for apathy now.

    L