Join us for a Special Meetup: Managing the Emotions of MBC at a Young Age - Jan 15, 2025 at 1:30pm ET Register here.
Join our Webinar: REAL Talk: Healthy Body and Mind After Breast Cancer Treatment - Jan 23, 2025 at 4pm ET Register here.

Bone Mets Thread

1…410411413415416…961

Comments

  • Bluefrog76
    Bluefrog76 Member Posts: 250
    edited March 2016

    Cristina: I wasn't in the Facebook pictures but would love to meet my twin! :)

  • LovingIsLiving
    LovingIsLiving Member Posts: 89
    edited March 2016

    Hello again everyone. I hope you're all doing well these past couple weeks. I just wanted to give another update on my brother. He went in for another round of Doxil yesterday. Still feeling tired, but for about two weeks now he developed this all over intense itching/pins & needles that comes on suddenly and goes away quickly. And his last blood test showed ALP (alkaline phosphatase) at 285. Could it be that the high alp is causing the itching? I couldn't find much online about it, most things talked about bilirubin which his is normal and stable. He's set to get a PET scan late April, and in the meantime MO is monitoring his tumor markers (CA 15-3) which was 150 in February.

    Hugs to all!

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited March 2016

    LovingIsLiving, I am happy that you checked in. I am also glad that your brother is continuing his treatment. I have never had Doxil, but I wonder if the itching and numbness could be a side effect of the Doxil. I am sure someone else will have more info. Has your brother reported it to his onc? Although it goes away relatively quickly, I think his onc should be made aware of it since he might recommend something to relieve it or adjust the dose of doxil. As far as the alk phos is concerned, sometimes the count goes up when healing is occurring in the bones. 285 is higher than normal, but it does not seem to be alarmingly high. Is your brother's onc concerned about it? It could decrease over time. Many of the blood tests and even scans do not show the results you expect and want until further along in the treatment. It is still pretty early for your brother.

    I hope your brother responds well to his treatment. I am sure others here will have more information for you.

    Lynne

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited March 2016

    Dee, We miss you. I hope the systems issues are fixed soon so you can rejoin us.

    Cristina, I am glad they you were able to see family and friend, but sorry that it was for a funeral. I hope things improve for you soon. You shouldn't have so many things to worry about and so many things to do.

    Mary, How are you doing? Have you found some time to spend with your dh? I hope your stress decreases soon. I know you have a lot on your plate right now.

    Wendy, Good luck during your appointment tomorrow.

    Good night everyone.

    Lynne

  • Wendy3
    Wendy3 Member Posts: 872
    edited March 2016

    Thanks Lynne a bit nervous but it will hopefully all get sorted

  • 3-16-2011
    3-16-2011 Member Posts: 279
    edited March 2016

    Lynne Thanks for asking. Life continues to be stressful. My brother from MA is spending this week with my mom in Montana. So, I know she is in good hands and getting lots of love and care. My son is struggling through school and struggling with pushing for as much independence as possible. I know this is important for him, but it is difficult for me. My cousins husband had progression on his first treatment and now he is on treatment #2 (for stage 4 prostate CA.)

    I am struggling with new femur pain. I got an exray and it was clear. MO ordering mri. Hoping it is arthris or a previously seen b9 cyst. MO contemplating PET thinking leg pain could be referred from spine.

    So my poor dh continues to be taken for granted and he gets my most irratable self these days.

    Feeling angry for Wendy and Linda and other ranters I missed.

    Christina so happy to hear you had some nice family time, and hopefully something to look forward to this summer.

    Wishing for a peaceful spring for all of us.

    Mary

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

    hi all. Trying to catch up o wats going on with y'all. Will have to go back and read and bbl. Let me say first Bkuefrog. Great pic !

    Well I got my port Monday and am hopeful it's the ticket to keeping me out of the hospital. Now when I get the uncontrollable vomiting and diarrhea home health can come here and administrater IV pheneran. Zofran and fluids. I really think at home I'll heal faster. I had to fill out form for SS disability review the other day and I was blown away by # of hospital stays in 2015. I don't have the exact number in front of me now but we'll over 60 days cumulative. Seeing it on paper was sobering. Def not quality of life. I miss yalls friendship. Been too sick to stay caught up on everyone and now I see so many new names and so many old ones gone. Can't wait to get go know the newbies (although prob not considered newbies after the time ).

    Waving hi and hugs to all I know.

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited March 2016

    Hi Patty, It is so good to hear from you. I hope you start to feel better and better every day and that those hospital stays are a thing of the past. I continue to pray for your recovery. I hope you get stronger soon and that you update us on those wonderful boys of yours. I have no doubt that they are happy to have you home. Don't worry about trying to catch up on this thread, just dive right in whenever you get the chance.

    Big (((hugs))) for you.

    Lynne

  • AmyQ
    AmyQ Member Posts: 821
    edited March 2016

    Lynne gives great advice Patty. Jump in when you can and don't feel badly you've missed something. Wow, 2 months in the hospital..that stinks. So sorry you've had such a rough go of it. Hang in there .

    Hugs

    Amy

  • Bluefrog76
    Bluefrog76 Member Posts: 250
    edited March 2016

    Patty: so great to see you post and hear the optimism in your tone. The port sounds like a great strategy for tackling problems quickly and in the comfort of your own home. Hopefully the spring weather will help, too. I find everytime I see a magnolia I feel a little happier.

  • teacher911
    teacher911 Member Posts: 152
    edited March 2016

    Patty, So good to hear from you. I hope and pray that the port is able to bring you the relief you need to stay at home and feel better.

  • GG27
    GG27 Member Posts: 1,308
    edited March 2016

    good morning all!

    The pages are still flipping on me, so I'm going to just quickly say hi & hope everyone is well. Spring has sprung here & DH is taking me to Victoria for the day in Clyde, so heater blasting & top down even though it will only be about a high of 50f.

    Take care everyone. cheers, Dee

  • mimipickle
    mimipickle Member Posts: 160
    edited March 2016

    Sounds like a great plan Patty :)


  • cjanet
    cjanet Member Posts: 288
    edited March 2016

    Hi Patty,

    Glad to hear you have the port now. I'm hoping that will cut down on hospital stays and improve your QOL. Waving hi!!!

    It is getting warmer. I have a lot on my plate, but my DH did have an interview yesterday and one next week and has been selling a house or two so we're nudging along. Not well off but not in poverty yet. I would like to cut my hours but then I read that affects your disability amount and it's better to go from full time to not working at all. So I have some thinking to do on that. I'd like to keep working through this year and see where my treatments go. The pain seems to be increasing so not sure if this treatment is working well. I will try the maple syrup and baking soda, it can't hurt, right?? I have an appt with a psychiatric PA this afternoon. Maybe I will get ritalin. We will see, I'll keep u posted. Most important to me is a sleep med and some anxiety meds.

    Hi to Dee and everyone else!


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

    good afternoon

    Cjanet hope your Dr gives you whatever you need today

    Thanks. Lynn, bluefrog. Amy, and teacher.

    Beautiful day here today. Ran errands all am and home health came out this afternoon. Was only needed a very short time to get blood for labs and vitals wich is great for me.

    Hugs

  • LovingIsLiving
    LovingIsLiving Member Posts: 89
    edited March 2016

    Lynne, he mentioned the itching to his onc and she advised him to take a Zyrtec to see if it helps. She isn't sure what's causing it so it's kind of an experiment. I'm not sure if it has helped him yet or not. When he saw his onc the Alk phos was not out yet. Before, it would run around 120-180, but never this high. I really hope it is a sign of bone healing.

    Have a great day.

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

    looking back i notice that deanna hasnt posted here in awhile. Does anone know if she is away on a trip ?

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

    Wendy you gave such a good advice, oh my gosh this thing with baking soda, sounds great.It's interesting I read Kris Carr's book about sexy cancer, I am always reading about medical stuff, but I did not pay attention to the other things she does. So I went to Youtube to see what's the word with baking soda, it seems most ppl agree but what do you think of https://www.youtube.com/watch?v=7O6GhVCvVgEthis link? Could you ask your Husband if agrees with them or…particularly he addresses the baking soda and cancer about 16:57 minutes, I would be interested to know what do you say about it.

    Wendy did you get to speak to Oncologist today?

    LindaE wow your situation makes me so mad. It's very hard all of a sudden having to deal with someone new. But this business with the Xray, from all I have read an XRAY actually contains the most radiation. A CT scan could be just the same, and as you mentioned having that many Xrays could have had just as much as one CT. And an MRI has no to minimal radiation. And so sorry you have to deal with the same unqualified person you had to deal before. Hope to hear good stuff from these tests!

    Btw , I have heard about many other people that sometimes "exaggerate" a pain here and there, just the other day I called one of these organizations and the young woman on the phone was telling me, that she had experience in the past of mets in and around her brain, and due to anxiety, months later, she kinda told them that she was in more pain than she was bcs it would be the only way for her to get scanned before her 6 mos. It's so funny that you should mention the same situation. You do what you think is best for you!

    Mary so nice to hear from Onco that will not give up and try to find the culprit.

    Cristina, hope you get the help you are looking for. Oh, a good night sleep is definitely a priority.

    Patty fantastic that you have the health care now! It's a blessing.

    Loving there is something that helped my mother called ATARAX, it's also an antidepressant but it helped a lot with the itching. There are different dosages, might be worth it to look into it.

  • rnsparki
    rnsparki Member Posts: 36
    edited March 2016

    Hi all. As usual I've been somewhat awol trying to cope with Madame X and her lousy side effects. I have them all. 4 months and "stable" but having second thoughts about continuing with Xeloda. QOL issues. However, I've been trying to stay kinda current on everyone's posts. Namaste.

    All of my mets sisters are always in my thoughts and prayers, and my entire family's prayers. Hope you all find peace, light, and comfort. And of course, good scans and NED.

    I noticed some posts about alkalizing your body's pH. Please speak to your ONC before trying any homeopathic, natural, or alternative treatment. Your meds react with all kinds of supplements, vitamins,

    minerals, and other meds and even foods esp grapefruitimage. It's a very complicated chemical dance to keep it all working. I am willing to try any clinical trial I can get into. But, I won't let my body be my science experiment. Maybe when I'm out of options.........

    Having said that, I am a nurse practitioner with many, many years of experience. When I was an ICU nurse in a large teaching hospital in a large city I saw patients "code" and die because their body's pH was not compatible with life. I have more information for anyone who would like it. Before trying anything be sure your treatment team knows what you plan to do. Your kidneys and lungs work very hard to keep your pH level compatible with life.

    If you want to alkalize your body do it with your treatment teams knowledge. You might only be making your lungs and kidneys work overtime to do their job keeping your body's pH in correct physiologic balance.

    Sorry, I had to.chime in on this because I worry about us all. Maybe science will prove this wrong but in a double blind randomized trial with strict safety concerns.

  • AmyQ
    AmyQ Member Posts: 821
    edited March 2016

    Patty,

    Deanna has posted on Ibrance fairly recently so I believe she's fine. You are so sweet to notice others when you are going through such difficult times.

    Amy

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

    rnsparki - I'm so happy to hear from you, I've been wondering about you lately. Sorry that Madam X is giving you a hard time but YAY on stable! As usual, you are a wealth of information, thank you for sharing with us.

    Mommal - wow I'm surprised to see that X-rays contains the most radiation! At least we can compare them to previous ones and see if there are any changes. Glad you approve of my "exaggeration", we do what we gotta do. How are you and Dani doing?

    Patty - so glad to hear home health works for you.

    Sending hugs all around.

  • cjanet
    cjanet Member Posts: 288
    edited March 2016

    Hi ladies,

    A good weekend to you all. It's supposed to snow here Saturday and it's been so nice out.

    Thanks RNsparki for posting that common sense information. I really don't like it when people give the advice of baking soda, or other nonsense like alkalizing the body. Sorry ladies who posted it, but it seems silly. Please check w doctors before doing anything. Sorry if I offended, but misinformation can be so dangerous.

    I saw the psych RN she gave me a script for Wellbutrin and extended release Ambien for sleep. Haven't filled them yet but will let you all know how they do for me when I do fill them.

    Deanna is fine I think. She's on FB a lot too.

  • LovingIsLiving
    LovingIsLiving Member Posts: 89
    edited March 2016

    Thanks Momallthetime, I will let him know about Atarax. He has been depressed lately so maybe it could help him deal with that too.

    RnSparki, I agree with the whole Ph thing. We have relatives that keep telling us about alkaline water. To me it just doesn't make sense. The stomach is so acidic, I assume once the water hits the stomach it's neutralized just like any other foods. But I do think that eating healthy and avoiding junk foods and foods high in sugar do help, even if only a little bit.

    Take care everyone and enjoy the weekend.

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

    Hi, girls... I'm here and I'm fine, but I appreciate the inquiries and PMs. Had my Faslodex (8th round) & Xgeva shots on Wednesday. This was my 3rd Xgeva shot, and for some reason, I decided I'd try it in the tummy (vs. arm), and I have to say, it hurt a lot more going in, and my legs have really ached a lot in the past 48 hrs. I'm going to attribute it to Xgeva doing it's job, but I'd suggest if you don't have much tummy fat -- which I don't, especially after Diep recon in 2008 -- Xgeva in the tummy may not be painless. Other than that, I'm doing well -- just most days don't have the mental energy thanks to Ibrance to tackle anything that requires focus, which is frustrating. But I'm trying to get out more while our weather is so idyllic here -- before the summer heat hits.

    I had a wonderful phone conversation with Carol a few days ago! If you've wanted to reach out to a BCO friend and haven't, I can highly recommend it. We connected as if we'd know each other forever. Which reminds me, I really need to update our contact list. I'm afraid I haven't wanted to look at it since losing two of our dear friends around the first of the year. But I will get on it soon, so feel free to send me any additions or updates.

    My take on alkaline diets... I was surprised to learn that, in spite of being a very healthy eater, I was pretty acidic around the time I was originally dx'd, and now I do choose high PH water if I'm grabbing a bottle at a store, as well as eating a very healthy plant based (often vegan) diet, so my PH has gone up. But focusing on getting your PH up in the high 7 to 8 range -- which I've heard of people doing and maintaining -- isn't an assurance you won't develop a serious illness, and it's certainly not a cure for cancer, as a holistic pharmacist once tried to convince me. He also encouraged me to forego surgery and chemo. I just personally believe our bodies are just way too complex to think that intentionally manipulating one system won't affect other functions, especially when you throw in the meds we're on. OTOH -- I believe so much in the mind-body connection -- perhaps as much as meds. So, if you truly believe it's helping you and you aren't experiencing any negative SEs, then hopefully it is helping you.

    Linda, I think the whole issue of how often to do scans and which ones can be overwhelming. It's one reason I believe it's so important to have an onc we totally trust to guide us, as well as listening to own bodies, which no one knows as well as we do -- although again I think the mind-body connection can play a huge (and not always positive) role. I'm sorry about the stress you've been having over the replacement onc and imaging. I hope you get things sorted out. I wondered if the x-rays are being offered in lieu of scans due to the allergy issue? Is the back scan maybe w/out contrast, and the other areas less of an issue, so that she felt she could combine the two modalities and keep your exposure to contrast dye down??? Just a thought...

    Patty, so glad you're home, and praying the port helps you stay out of that hospital!!

  • GG27
    GG27 Member Posts: 1,308
    edited March 2016

    Hi all!

    DH took me for lunch at our favourite place which is closing in April, stupid new owners! ;-) It's where we went for our anniversary, but I was blind sided by MO that day & it cast a shadow on the entire time, so we decided that we wanted a "do-over" & it was lovely & gave us a good memory of this place.

    Eventually the temps went up to a point where we could put the top down & the drive home was great. DH took a pic of me at the summit of the Malahat.

    I've been reading everyday even though the pages are still jumping around, it's so annoying, I don't know why it has started to do this, it's only on BCO, no other sites that I read. So while I don't post often anymore, I am here for you all, through good & bad.

    Best thoughts for all of you. cheers, Dee

    image

  • Lindalou
    Lindalou Member Posts: 598
    edited March 2016

    Hey Dee, You look comfy and happy and ready to hit the road some more. Top down, and heat on is just the best! Glad your do-over was a success. Happy trails.......

    Patty, hope you are continuing to feel stronger and that home health care is giving you the help you need to stay out of the hospital.

    Amy, did you get the tooth/root canal taken care of? Did you find an ONJ specialist?

    Wishing everyone a good weekend. Anybody have Spring flowers to share?



  • Wendy3
    Wendy3 Member Posts: 872
    edited March 2016

    Lovel picture Dee isn't the sun great hopefully it will keep us going I memory for the next week of rain. 

    Deana nice to see you hear again. I agree seeing as I haven't been on any treatment at all over the last month I think the maple syrup baking soda concoction is my little way of feeling like I'm doing something also started the apricot seed therapy (yeah I know) . B17 together with pineapple is supposed to help as well. So hopefully I won't poisen myself with cianide one for every ten pounds is the dosage for now. As I said I would eat dog poop if I though it would help. I guess this is a phase of cancer doing all this crazy stuff eh? 

    I wish every body a super weekend with lots of spring flowers and sunshine.

    Wendy


  • AmyQ
    AmyQ Member Posts: 821
    edited March 2016

    Lindalou

    Still no action on the tooth. When I google ONJ specialists I find rheumatologists, is this right?

    Suppose to get an Xgeva shot today but going to forgo a little longer. The tooth needs to come out, I just don't know how long it stays in ones system. Last shot was Dec 4, 2015.

    Waiting for onc appt right now so will ask. Thanks for asking.

    Amy

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

    wendy. Hello. Hope I am not being to personal but why no tx in a month ? Your choice ?

    Deanna. So GREAT to see you !!!

    Lindalou. Hi

    Dee. Great pic. Looks cold. Glad you had a great do over and with the top down. That rocks !!! Life : live it like you love it !

    Yesterday and today I got out of the house. Yea ! Even if it was just running errands it was great ! I even made it to the library and got some books. I love reading but haven't had the energy to drive there. Now hopefully I can return them on time to prevent late charges. I even stopped at sonic and couldn't decide between two shakes : peanut butter fudge or strawberry cheesecake. So I got them BOTH. Course in mini size. And I have some of both left in the freezer for another day. I usually don't do sweets. Just don't like them.but I got an itch for them. I Prefer fresh fruits and veggies can't find many of those at a fast food drive thru.

    Waving hi to all

  • Wendy3
    Wendy3 Member Posts: 872
    edited March 2016

    No Patty you are not being too personal I'm putting it out there ...

    I was supposed to start a clinical trial yesterday but Tuesday I got a call from the clinical trial nurse saying my estradial levels were to high and didn't meet the guidelines for the study. My onc really wants me on Faslodex and it's not approved in Canada yet so a trial was the only way. Things up here take time scans bloodwork and before you know it a month has gone by. Tamoxifen did not work for me so a change is needed. So I will reapply for the trial and my onc said if my levels are still to high then we will get me the Faslodex off study. First shot either way will be April first after all this drama it better do something...

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.