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Bone Mets Thread

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Comments

  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited July 2016

    Congratulations Susan! I sure wish we had a like button for the good news that we share with each other

  • LovesMaltese
    LovesMaltese Member Posts: 551
    edited July 2016

    Wendy !! Wahoo!! Hugs Carol

  • LovesMaltese
    LovesMaltese Member Posts: 551
    edited July 2016

    Susan- Congrats on your marriage!

    Hugs Carol

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

    This thread moves so quickly and I work too many hours!!!!

    Wendy-wonderful news- happy dance time!!!!!!

    Susan-congratulations. What a great time in your life- enjoy every minute!!!! Cherish your husband!!!!

    Lindalou-a VERY decent report indeed

    Aurora-waiting to here good news from you- no call from your MO sounds like a positive

    Hugs to all

    Babs


  • annieoakley
    annieoakley Member Posts: 653
    edited July 2016

    Good morning to all,

    Susan, congratulations on your marriage, wishing for you many many years of health and happiness. Thanks for sharing the picture with us.

    Lindalou, yay to a very decent report! You must feel relieved about it and I see you're coming up on 7 years metastatic next month!

    Wendy, happy dancing all over you, that is the best news ever.

    Aurora, thinking of you and sending positive thoughts for excellent scan results.

    Mary, glad to hear they're will be no treatment change over the summer.

    Carol wanted to say hi and I enjoy reading all of your posts. I just finished reading Radical Remission and I want to reread it!

    Off for my pamidronate infusion today. Hoping I do not have the terrible reaction I did the last time. I have my niece's wedding in 2 weeks and really need to feel well.

    We're in for a 41 degree day today, hot flashes will be plenty I'm sure. Wishing everyone a pain free day and wonderful weekend.

    Hugs to all, Annie

  • iwrite
    iwrite Member Posts: 746
    edited July 2016

    Wendy,

    Great news! Enjoy the chance to be worry free and relax!

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

    Lindalou and Wendy - Congrats to you both!

    Susan - beautiful pic and congrats! Wishing you many years of happiness.

    Mary - Enjoy the summer on same tx. I hate those migraines.

    Annie - hoping Pamidronate goes well for you this time. Hot and sticky here too.

    Hugs all around!

  • Wendy3
    Wendy3 Member Posts: 872
    edited July 2016

    Wow woke up to a hail storm this morning my poor tomatoes 😩

    So I just read on one of the other threads of a woman who had , had breast cancer and had a mastectomy and was declared healed only to find out in a year that she had a reoccurrence and resulting mets to bone. The thing that made this story different from the others is that during her scans the doctors found several bone mets that had been killed by her immune system prior to the first detection. This gave me a lot of hope in my own poor bodies capabilities of fighting this disease so for right now the key for me it to build my immune system up. Kill that cancer

  • Mausie
    Mausie Member Posts: 12
    edited July 2016

    Dear dlb823

    I just saw this post. I have iron deficiency anemia and my doctors are all perplexed, as they cannot find the cause of this. I saw this in your post "Also iron and copper have both been linked in research to our disease process and others". Can you tell me a little bit more about this - what exactly do you mean "our disease process"? Do you know how iron is linked to it specifically, or where I can find information? I can search myself if I had a clue as to what search terms to use. I appreciate any help you can give. My hemoglobin and ferritin never even hit baseline bottom - they are always low, even after an iron infusion. All investigations have been negative. I am now on letrozole, but cannot find any information incriminating that drug. Thanks for your help.

    Mausie

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

    Hi, Mausie ~ By "our disease process," I meant that it appears that having excess iron, which is stored in our bodies, may be counterproductive to fighting cancer because it makes the microenvironment of our bodies more hospitable to cancer cells. Here are a few articles that address this.

    http://www.ncbi.nlm.nih.gov/pubmed/8664805

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC403655...

    http://blogs.timesofindia.indiatimes.com/one-healt...

    http://preventcancer.aicr.org/site/News2?page=News... (This is a fascinating one I just came across that suggests curcumin counteracts the negative effect of too much iron.)

    There are literally dozens of other articles out there. Just Google "Iron + Cancer" and you'll come up with all sorts of studies that led me to steer clear of iron supplements or supplements that contain iron, which also pose a risk to heart health. But that said, if you have a true iron deficiency, clearly the cause needs to be found and treated, and perhaps somewhere within these articles and others you'll find a clue to what's going on -- assuming it's not tx related, which is my other thought. Could any of your meds be causing this? I know, for example, that Ibrance lowers our RBCs, but I was also told that that kind of anemia is NOT due to iron deficiency.

    Somewhat related, I needed a couple of transfusions when I was hospitalized in 2014 with pathological fractures. In that case, I was told it was simply my recently dx'd and still out of control mets that were causing the problem -- not the surgery I had. (This may not apply to you if you're not Stage IV and dealing with mbc. I can't tell for sure from your information.)

    Hope this helps some, and I'm sure others here will also have helpful input. Deanna



  • LovesMaltese
    LovesMaltese Member Posts: 551
    edited July 2016

    Wendy that's me!! My bc came back not in breast but bone and first scans showed thoratic spine that healed already. Let's build our immune system!!

  • jensgotthis
    jensgotthis Member Posts: 673
    edited July 2016

    About the immune system rebuilding, that's something I've talked with a doc about and he gave me some materials and a supplement regime tailored to my medical history and treatment stage. If you'd like a copy PM me your email address and I'll forward them. His basic take is that rebuilding our innate immune system is the key to long-term survival. I've oversimplified as you can imagine, but it's along the lines of what we're all discussing on Radical Remission.

    Happy to see so much good news lately and how beautifully people are living life. Thinking of those waiting on scan results and considering treatment options. I"m hanging in - I'm about one third done with rads to my breast and axillary area. My tumor markers had been dropping nicely and now are holding steady at 22 for two months (from a high of 58 in February). Enjoying this hot summer and making plans for Hawaii at Christmas.

  • Peanut0110
    Peanut0110 Member Posts: 37
    edited July 2016

    Interesting about the iron I've always had high amount of iron . Now I am on Xeloda and I am being told I am now anemic and my liver is all wacky with high numbers on my blood tests

  • DaughterLove15
    DaughterLove15 Member Posts: 46
    edited July 2016

    hi ladies!

    Boy this thread moves fast! I'm 9 pages behind and I apologize for not being a good support over this summer and I hope all of you are doing well and scans are showing improvement for all!

    My mom finally joined the boards but I don't think she's posted yet. NursePat58 if anyone would like to send her a message. Her history should be in her profile which is similar to my bio as im posting on behalf. She just finished the second cycle of the trial she's on with Dana Farber in Boston and unfortunately not tolerating the dosage too well. She goes for a scan tomorrow to see if there is any improvement or at least static. Have any of you been severely dehydrated from your treatments in which your kidneys began failing? I just really want the tumors in the liver to go away then we just contain it to the bones!

    I went for my genetics testing a couple of days ago so I guess I'll know in a few weeks if I'm BRCA2 or not and I'll go from there with all the preventative surgeries. Forcing menopause in my early thirties scares me but the cancer is just too strong in my family to take any chances. Also having a melanoma scare so meeting with a surgeon and biopsies over the next few weeks.

    I apologize to be a Debbie downer. On a positive note, my older brother just got engaged and can't wait to wedding plan with his fiancee and my mom. Now if only my own long term boyfriend would propose :)

    I hope all of you are enjoying your sumner!!

  • Mausie
    Mausie Member Posts: 12
    edited July 2016

    Dear dlb823

    Thank you kindly for all the information you have provided. I will take the time to read and learn. Yes, I have already googled iron and cancer, but the field is so vast I was trying to narrow it down a bit. I am truly iron deficient, and have no ferritin stores at all. Rock bottom. My hemoglobin never gets up to normal, even after the iron infusions, of which I have had many. Sometimes I can go an entire year with a "livable" hemoglobin, and other times it drops so fast I need another infusion three months later. Hematologists and my Hausartzt have investigated thoroughly and nobody knows what is going on. No evident bleeding anywhere.

    Again, thanks for your time. I appreciate that.


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

    hi all!

    I'm feeling horrible, this started last night, the immense bone pain & a migraine headache. I almost passed out this morning coming upstairs. Had a fever of 100.7 this morning. I don't know if I picked up an infection from the hospital yesterday or if it's somehow the combo of Ibrance/Femera & my pamidronate infusion. I took a tylenol/ibuprofen combo & my temp has dropped somewhat, but I still feel very wobbly. Could it be a reaction? or do you think I picked something up? I don't want to go to emerg if I don't have to, it involves ferry trips etc... thx, dee


  • annieoakley
    annieoakley Member Posts: 653
    edited July 2016

    Hey Dee, sorry to hear you're not feeling well. I can't seem to find any known interactions between Ibrance and Pamidronate but that doesn't mean that none exist. It is possible you've picked up a bug. Did your MO ever express any concerns about getting a fever while on Ibrance? If you can't keep it below a 100 I would get it checked out, I know the ferry trips deter you from wanting to go. Lay low for the day and see how it goes. Sending you healing hugs, Annie

  • AnimalCrackers
    AnimalCrackers Member Posts: 542
    edited July 2016

    Dee - I saw your post in the Ibrance thread and responded there. I'll plop it here too.

    Hi Dee,

    Sounds to me like the pamidronate infusion is the culprit. It is a bisphosphonate like Zometa. Did you just receive the infusion within the last 2 days and was it your first time getting that infusion? I got very ill after my first Zometa infusion. It can be a common reaction to the first infusion. Fever, chills, vomitting - classic flu like symptoms. You can also feel bone pain from it too (but the letrozole can cause that as well).

    Here are a list of side effects for intravenous pamidronate: Flu-like symptoms (such as mild fever, chills, fatigue, muscle/joint aches) may occur after treatment. Most of these effects are mild and can last up to 48 hours. Bone pain, redness/swelling/pain at the infusion site, headache, dizziness, loss of appetite, nausea, vomiting, diarrhea, drowsiness or trouble sleeping may also occur.

    I would call your doctor though just to be sure.Feel better!

    Cathy

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

    hi again,

    feeling somewhat better, I've gotten my fever down to normal with Tylenol, though I'm still shaky & weak. I had my pamidronate yesterday afternoon. It's the first one after starting Ibrance, but I've been on pamid for over 2 years. Cathy, do you think it's the combo? It is the same feeling that I had the first time I ever had pamidronate. Bad headache, fever, chills, extreme bone pain & nausea.

    Annie, there's something about fever etc in my paperwork about Ibrance, but I don't remember anything specifically about what to do about it.

    I know if I call them, they will want me to come over to Vancouver & I just can't handle a 6-8 hour trip each way just to do it all over again on Tuesday.

    I'm going to just take it easy today but if my fever goes up again, I will call the local hospital which is just a short ferry ride away & see what they have to say.

    thanks you guys for the help, dee

  • AnimalCrackers
    AnimalCrackers Member Posts: 542
    edited July 2016

    Hi Dee,

    Glad you are feeling a little better. How often do you get the pamidronate infusion, monthly or every 3 months? I've been getting zometa infusions for 2 years. I only got sick twice from it. I was on Tamoxifen at the time and I had quick drips (15 mins) both times (I've been having 30 minute drips to ensure I don't get sick ever since, although I could probably go back to 15 min drips at this point without issue). I started out getting the infustions monthly for 6 months and then went to every 3 months. By the time I was on Ibrance/Letrozole I had 3 solid cycles under my belt before I had my first zometa infusion with that protocol and I did not get sick from it. So I'm wondering if it is the combination of the drugs and the timing for you. But I don't know. Sorry. I don't think you picked up a virus that quickly. I've been on Ibrance for 7 cycles now and haven't had so much as a cold and I've been around a lot of sick folks between DH, work and hospitals:)

    Rest and drink lots of fluids. And definitely call the hospital if your fever spikes.

    Hugs,

    Cathy

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

    Cathy,

    I get pamid every 4 weeks, so I didn't get the break that you started with, they give it to me over an hour but sometimes I get them to slow it down, but I didn't think about getting them to do that yesterday. I think you're right that I don't have an infection, the timing is just too weird. I felt fine after my infusion, fine after dinner, but by about 9:30pm (6 hours post) I started feeling really bad & all night.

    thank you for your insight.... I get the best answers here from all of you who have been here ahead of me, dee

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

    Guys thank you so much for your support.

    First Susan congrats on your wedding. I saw the picture, beautiful.

    Wendy dear, that sounds just great!! So happy for you.

    Lindalou Glad that things are holding up.

    Dee hope things get better fast for you.

    Mary have you gotten an MRI lately of the brain, just to make sure it is migraines. I take Imitrex 100, now I take even two within a few hrs, did not used to, but sometimes it's needed.

    I don't even know how to address what's going on. Pet/Ct done. Onco EMAILED me late pm Thursday (after I emailed her that PET is done, so she should know) so she wrote that it shows higher SUV everywhere. AND progression. She could have called. I don't understand these ppl. What's wrong with them. Yes, it takes time, BUT when after a 4wk period PET/CT shows such ugly differences I THINK they should take 5 mins and call the person. I can't even…. Anyway she told D to come in for in for BT (which she said it could be next wk, and I am like NO, we will be there early tomorrow!) to make sure about the therapy. Off she went on Friday.

    Then we had a meet with Rad Onco for the lesion on the skull that has a life of it's own. They really wanna do Rads, but there will definitely be loss of hair and no regrowth. And it's right at the front close to the forehead. So how do you fix this? So major problem. Dani is really not happy about it. Downright angry. Onco ordered an MRI of the Brain for this week, and THEN if it's still going crazy she might not have a choice, if it's not, Rad Onco is willing to give it a chance with systemic, hopefully. (D is already working on a wig with bangs, she sent me a picture, I guess it's her way of saying she knows she might have to go that way)

    Liver: innumerable lesions from 2 discrete ones! And physiologic uptake in the spleen, gastro tract, renal and urinary bladder. What does that mean? The monster is in these areas? I did not get detailed explanation. Could someone explain it to me.And all the bones the SUV is higher by almost double. And the mesenteric left quadrant that I keep telling them it gets bigger all the time. And uptake on the right Hilum. Are we talking lung here?? And nothing much on the node that doc felt! Something there but they are not sure what.

    Seriously, should I go bonkers now?? What is she thinking, this so well renowned new Onco, I have to call her tomorrow and she will run the BT results with me and that's it? I really hope when I call like 9AM and tell secr that I wanna come in, that she will welcome me. It's hard to get all that through the phone!!! So now I worry about this stupidity.

    They took her off Ibrance already, she is onlyon Letrozole and Herceptin. Soo nervous. I asked again about biopsy, and Onco was not keen about it. She doesn't think it's gonna show something new. Hmm I don't know, that was before when we only knew of 2 lesions in the liver.

    I am stunned really, HOW could this be? And D does not know yet, I could not bring myself to tell her b4 the weekend. Docs, Onco and Rad Onco agreed that thereis no need to tell her at this point, about the enormity of the status. She knows it's not good. She did not even ask me if I got the report. We'll make a plan and then if it makes a difference for her we'll tell her, if not then we would try to push it till next scans. She is busy. Today is outing with the kids. There is not time for this nonsense!!!

    I am really shaking, and it's been 3 days already. No one would know. I went about my business, doing what I gotta do. Did not tell my other girls, trying to go easy on this.

    AND, wait, you know it's always interesting with us. On the way back, after literally a whole day in the city, we had a cab, and someone rear ended his car, twice, I kid you not, we are ok, the guy had to wait for the police, we left and had to take 3 trains home!!! That was actually funny!!

    Everyone thank you.

    P.S – Warning, I am posting the same info in the threads I belong to, so be prepared for doubles.
  • 3-16-2011
    3-16-2011 Member Posts: 279
    edited July 2016

    Thinking of you and dani momallthetime. Sending thoughts of peace

    Mary

  • LovesMaltese
    LovesMaltese Member Posts: 551
    edited July 2016
    MomAtt. My heart is aching for you. I don't know what to say but the same old thing I always say which I only parrot what Deanna has posted over and over to everyone that is unsure or question where they are. Which will bring you to my appt on Friday at Dana again when I asked about Pet Scans my MO said Pet scans for MBC at NCI affiliated facilities ( at least Dana And UCLA) are not even considered. Bone and CT scans (and MRI) in Dani's situation. Again, Dr Partridge is a cookie cutter perfect match for Dani. It's doable to Get there by driving (3.5 each way? ) I would be willing to even meet you there. I don't like the way this new MO operates. I promise you from the bottom of my big heart that if you would just get there and see Dr P that your life and Dani's will be in the best hands. My prayers are always for you and Dani.

    Biggest Hug I know how to give,

    Carol
  • LindaE54
    LindaE54 Member Posts: 1,379
    edited July 2016

    Mommall - Just don't have answers. But know that Dani and you are in my thoughts and prayers.

    Dee - How are you?

  • Bluefrog76
    Bluefrog76 Member Posts: 250
    edited July 2016

    MomATT: sending you lots of love and prayers. Where was this latest oncologist? I'm so sorry you got such difficult news.

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

    good morning all,

    MomATT, like others here, my heart breaks for what you & Dani are going through. I would take Carol up on her offer of getting into see her MO. 3 1/2 hours isn't that far (I travel 6 hours each way every 2 weeks) ((hugs))

    woke up this morning still having a temp of 100.7, very achy bones & headache but not with the overwhelming dizziness & weakness, I was at least able to climb the stairs this morning instead of crawling up them. this doesn't seem to be going anywhere. still waiting for trial nurse to call, but it is only 8:30 am.... I'll let you know what she says. I'm pretty sure I'll be heading to Vancouver today instead of tomorrow. dee

  • LovesMaltese
    LovesMaltese Member Posts: 551
    edited July 2016

    Dee, I am so sorry this is going on. What day in your Ibrance cycle were you when you stopped it? Your CBC should tell all.

    My first couple of months on Ibrance I had no symptoms and was afraid it was not working but I still struggle with the xgeva shot because it lowers my calcium and mag so much that I am weak and I get twitches (eye and corner of my mouth once) but not until 5-7 days after shot. I just got the shot Friday and already today I can feel the weirdness I feel. I added extra mag and calcium this time to see if it makes a difference. I wonder if your calcium/mag got too low and somehow took on a different approach with the Ibrance in there. For what it is worth.... My cycle is 2 on 2 off.. by the 9-10th day off I am a brand new person. That is how long it takes my body to respond back. I have been doing this since Oct and overtime my bones burned and ached I was assured it was progression... It was never progression but stable with some healing. I also had rads at the same time I started Ibrance so my bone marrow took a big hit.

    Big Hugs

    Carol


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

    Dee, I am shocked to read that you had to crawl up the stairs yesterday. No way is that within the normal reaction to any of our meds -- at least nothing I've ever heard or read about, and kind of sounds more like a flu or other bug, which I know is miserable, but hopefully not med or mbc related. Sending you a (((hug))) and I will be checking back often to learn what your onc's office wants you to do. Hope you feel much better very soon!

    MomATT, my heart aches for your situation. You and Dani need some good news!!! I like this Cornell onc (except for the emails vs. phone contact), but don't think yet another opinion could hurt anything. Is there a reason you can't let Carol open the door to seeing her onc @ DF? If you were in CA, I would drag Dani and you to UCLA!

    I hope everyone's week has some bright spots! Deanna


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

    they are sending me to emerg in Nanaimo. Ordered CBC, urinalysis etc. We shall see. Trial nurse said it was good that I stopped Ibrance. Will check in later

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