Bone Mets Thread
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Lita57,
You rock! Every time I read your posts I have a smile on my face. You inspire me to never give up
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I think that for all of us that we have good days and bad days...but we are lucky to have so many treatment options and the here and now is just so important for everyone, not just those of us who face MBC with courage and hope but for our friends and family as well.
My husband is not feeling too well at the moment. My good news at stable scans has actually allowed him to reflect on these last two years and his stress and feelings of hopelessness has overcome him. I think that being a care giver is worse at times as they are the ones left picking up the pieces.
Tonight I salute all those men and women out therewho pick us up when we are down and keep us going when things get so tough. Thank you.
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Ditto, vevs. Well said. It’s an unbelievably difficult challenge.
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Vets, I agree with you. People who care for us and about us have a difficult role. I join your salute to all those people who give so much of themselves and do so much for us.
Lynne
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Vevs....totally agree. My husband deserves a medal. He is my rock.
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I agree too vevs, to the spouses and significant others of any kind 🥂🍻❤️🎉👏
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Let me pile on... So much love from my hubby. He would do anything to take his away from me. I salute all significant others and caretakers!!
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Well said Vevs. I am so lucky to have a wonderful and supportive husband. This is a terrible diagnoses to be given but I will not wallow in it. I take ibrance, letrozole and have monthly Xgeva and 3 monthly scans. Endure s/e’s and pain from my extensive bone mets but it is what it is and with the support of my husband my life goes on exactly as before.
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Well said Vevs. I am so lucky to have a wonderful and supportive husband. This is a terrible diagnoses to be given but I will not wallow in it. I take ibrance, letrozole and have monthly Xgeva and 3 monthly scans. Endure s/e's and pain from my extensive bone mets but it is what it is and with the support of my husband I still have a happy and fun filled life
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From reading the posts seems like I’m not the only one with an incredible husband! Trev has had to answer the same question every single day for 18 months ‘Am I going to die?’ and he has answered it with sincerity and empathy every single time. I’m not sure if the roles were reversed if I could have been so understanding. He now has to answer it every six weeks or so....there’s progress.
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My husband is my rock too ! and keeps me laughing all the time. He's in the hospital right now, with complications from thyroid surgery. I'm going in to see him in a few minutes, and I will have biopsies in the same hospital of my right breast in the afternoon !
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Unfortunately, I don’t have a great story to tell about my spouse. We love each other completely, but since my diagnosis, he’s become distant, drinks much more than he ever did, and is scared about being left alone when I am gone. I have multiple health issues (Sarcoidosis which caused heart issues, along with MBC), so I admit I may not be around as long as those with bone-only MBC. ButI am not dwelling on it, and try to live as positively as possible. I admire those of you who have husbands (or wives) who are strong and supportive, but I am the one in our relationship who has to be strong for the both of us. It is exhausting. We are both seeing a therapist, so I’m hoping he will find the support he needs to deal with his emotions.
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Boo,
Trev is my second husband, if i was still with my first then I’m doubtful that I would still be here. I admire you greatly for putting in time and effort to see this through with your husband.
There are times when I wonder why he has stuck with me because we only had two years together before I was diagnosed with breast cancer. At the time our son was only a year old and he could have walked away very easily. I don’t think that we could have got through this if we didn’t have a young son together but as the years have gone by we have, luckily, grown stronger together.
My sister has also been my rock and is always beside me when the poo hits the fan. It’s never easy and no one will ever understand the devastation it can cause but I am blessed with great friends as wellso it makes it much easier to deal with on the dark days.
Yesterday was a bad day, I could hardly move in the morning with stiffness, not from the bone mets but from the treatment but thankfully today is much better. It’s just taking one day at a time and being able to offload on somebody, whoever that somebody may be.
My relationship with my mother is complex and she has got awful eczema at the moment, yesterday she told me to my face that it was my fault that she had the eczema because she is so stressed and worried about me. Years ago that would have upset me for days, yesterday I looked at her and thanked her rather sarcastically for making me feel worse than I already did! I am envious of those who are close to their mothers but I am realistic enough to realise that we won’t ever have that.
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Vevs,
Thanks so much for your reply. Your family sounds like mine. My oldest sister is my “person”. She’s been with me since diagnosis, and is also my rock. Your hubby is with you because he loves you, plain and simple. You found a good man the second time around. Good for you!
My hubby and I talked over the weekend, and I see that perhaps I have not included him where I should have, and instead tried to shield him from a lot of the treatments and decisions. I thought I was doing the right thing....protecting him, etc. So I guess it’s not all on him. I invited him with me to my next appt. with my onc. Hopefully, this will help him to feel more involved and less stressed.
Regarding parents and other family members....hang in there. I am giving you an electronic HUG to support you for what your Mother said. I no longer have parents who are alive, so it’s hard for me to relate....but your response was perfect. Don’t allow anyone’s negativity to change your thoughts or actions. You are the bigger person...
Take care, and know that you are not alone in this crazy MBCjourney.
Laurie
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I have hard time remembering everyone's screen names so when I finish reading I forget the name lol. Too much in my mind I guess.
Kendrasue I started my treatment with ibrance, faslodex and zometa. It has been only 21 day but I feel fine just my white blood cells dropped down.
Vevs you are right. Care givers suffer as well.
Is any stage IV group close where you guys live?
I was thinking to find close to my town so we can meet for coffee or have a chat online.
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Kendrasue, I'm the biggest baby, but I've managed the Faslodex shots. It's ALL about the nurse’s skill in giving shots. The shots are given in an area of your backside that doesn't have a lot of nerves, to avoid pain. But sometimes it can hurt. If you find a nurse whose shots don't seem to hurt, stick with her/him. Sometimes though it's just luck. The needle stick itself doesn't hurt so much. It's the medicine itself. Warm baths/showers, ice packs, taking a walk afterward, have helped other ladies get through. You can do this.
Laurie/booboo1, my husband was a raging alcoholic when I was diagnosed Stage IV. We had been married a few weeks. I told him I couldn't focus on getting better if he was drunk. He quit drinking/quit smoking/lost 100+ lbs, and now competes in Ironman triathlons. We still struggle with my cancer, but we love each other. I believe that giving my husband a directive helped him feel like he was part of my treatment. It's crippling to partners to know that they can't cure us. But, they CAN help us, immensely.
Thanks for cheering my good news, everybody.
Zarovka, I've been on Ibrance/Faslodex since Oct. My first PET in Dec. was good. March PET even better.
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learn something here new all the time... never heard of fentanyl nasal spray, how long does that last? I have used lowest dose of patches since 2013. I tried to go up a dose but became so twitchy, I literally was bouncing off the bed & it drove me & my DH crazy.
Minnie have you done radiation to hips? Have had both radiated myself, using twice a day treatments. Also have done quadromet injections from RO, which helped a lot. I was thinking last year that hip pain was going to be a way of life, esp’ly after 3 falls that fractured both pelvises. Today my hips no longer hurt. Use a cane to prevent falls now when I am out doors & bring w/c just incase because I do not want to fall again. Hope that helps. Sue
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Well, thank goodness for our pets.
>Z<
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Vevs, we do forget how difficult it is for the care givers. Thank you for reminding me to appreciate my husband who listens to my depressing times, sometimes days. It's hard not to be selfish
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Sue 2009, I have had 4 sessions of radiotherapy and another 6 togo. I use fentanyl nasal spray. It comes in a small bottle of 40 doses. My ONC said once every 6 hours, but I find I am ok in daytime, but take a double dose at bedtime to,help me sleep. I have never fallen, but I am afraid of falling. I have crutches tohelp me outside the house.
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Tarheel Michelle,
Thanks for sharing your story. I know my hubby will come around. I just think he needs more support than I can give him right now. I love him so much; we just celebrated 32 years of marriage. I think we are just going through a big bump in our ‘new normal’ lives, and there will probably be more times in the future when we get overwhelmed by this disease. I applaud your husband’s response to your directive. You have a good man by your side.
Also, congrats on your good news about your treatment.
Laurie
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Hi, I’m new to this thread, I was dx mbc last year and have been on Tamoxifen for 3 mths then ibrance/femara. I’m wondering if I should push my onc for surgery, chemo and radiation to my bone met. My onc wants me to try ibrance first, but I read leaving the primary tumour(3cm) intact could result in tumour burden to the body, also with bone only mbc should we go for surgery and then radiation to the spine to kill cancer cells to achieve NED?
I read through most of your treatment, anyone could shed me some lights? Thanks
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Hopeful: With respect to surgery of the primary tumor, there are different opinions among the MOs. Some argue that surgery reduces tumor burden and prevents the primary tumor from shedding more tumor stem cells which could form further mets. Others (mine is among these) prefer to keep the primary tumor as an indicator if treatment is working (you cannot see this on bone mets very well, because a hole in the bone will stay like this for a rather long time). Plus they argue that the tumor has already achieved its evil, i.e. the (micro-)mets everywhere, and will not do any more harm. And the measurable disease of the primary tumor will allow you to enter some clinical studies which bone mets only will not qualify you for. Additionally, it is under discussion whether inflammation after surgery may trigger sleeping tumor stem cells to start growing/cell division. Clinical studies comparing overall survival with/without surgery show ambiguous results, some are in favour of surgery, some are not.
With respect to radiation, it depends on your level of pain and the amount of bone mets. As far as I understand, one cannot perform radiation of the whole spine but only of certain areas, because otherwise you will get problems with your blood cells since the bone marrow will be damaged by radiation. Additionally, radiation will not kill all met cells, and you would want to keep the possibility to have radiation done again/at a different spot for a later point of time.
In general, once the cancer has spread within the body, there are that many tumor cells in the body, you will never be able to destroy all of them by treatment. You can only keep them at bay. At the same time, you want to have as much quality of life as possible. That is why you start with the treatments which are easy on you and move on the treatments with more SEs if a treatment fails. An attempt to cure is only done with oligometastatic disease (3-5 distinct mets in one single organ).
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Hi Nettie, thanks for the very detailed sharing. I’m indeed Oligometastatic (T7 and iliac no longer light up in PET scan after ibrance, only T12 still lightup now). I’m 43 years old. Do you think I should go more aggressive (surgery and chemo)? My onc prefers to wait and see, he feels there other options available after ibrance/femara/Xgevafails..
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Can anyone share their experiences with Quadromet? I may have that next.
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Hi hopeful, I agree with a lot of what Netta said but have taken a different path as I had my primary tumor removed and my one bone met radiated. I go the UCLA for treatments and am also oligiometastatic. My MO is treating me with curative intent - with curative meaning that I die of something other than MBC. Reducing the tumor load was my aim. I also didn’t have reconstruction because of the small chance of activating cells again. I had planned on doing DIEP Flap but at that point was not doing well in the odds game having been dx stage 4 de novo at age 41.
The only nagging worry about this for me is with immunotherapy - what I’ve read is that you need the primary tumor.
Your best course of action is what you feel comfortable with.
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Hopeful: I cannot make this decision for you. It depends on many issues. How good is your response to Ibrance/Femara? How fast has your cancer been growing (KI67)? There are many ER+ women who respond better to endocrine tx than to chemo. I personally appear to respond exceptionally well to I/F, my primary tumor shrunk from 8x2.5x2 cm to 0.9x0.4x0.4 cm within 6 cycles! My KI67 was 30%, which is intermediate. If KI67 is high, chemo might be a better option.
With respect to bone mets, it is also difficult to say. If it is really only these 3 mets, it might be worth a shot to perform radiation, but one cannot be sure, if there are x micromets, which cannot be seen in the scans yet and which will start growing at some later point of time. Unfortunately, there are small bone mets in my whole spine, therefore rx for a curative attempt is not an option for me.
If I had only 3 bone mets, I would personally (taking into account my own cancer type and response) go for surgery and radiation and stick to I/F and Zometa (I get this instead of Xgeva) and hope for a long time of being NEAD/NED. But this is only my opinion, someone else might act completely different. I must also say that my SEs of tx are quite easy on me. Additionally, one needs to consider that surgery and radiation will both require breaks from the Ibrance, which might also not be great for keeping potential micromets at bay. Very difficult...
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Netta- Thanks for such a clear concise description of the thoughts on surgery of the primary tumor!!
I have nada to add, except that I remember a study from MD Anderson saying they felt that oligometastatic disease (1-3 mets, preferably only in bone) could be cured about 20% of the time (and this was pre-Ibrance days!), and for that reason they felt that people who had a high risk of recurrence should be screened early & often.
But of course, with only a couple mets detectable in screens, the chances are huge that there are many many more micromets spread around, too small to be picked up yet in the screens. For me, with extensive mets, I'd be happy to take the drugs if they could just to keep the cancer at bay forever...
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Netta- I have a question for your MO-what about the heterogeneity of the tumor cells? By leaving the original tumor in, yes you can see if it responds to a treatment or not, however the mets have mutated to escape drugs, and what is driving them is likely to be different from the primary tumor.. so, are you ensuring that there will be a larger population of heterogeneous tumor cells?
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Hi Jensgotthis, thanks for sharing immunotherapy needs primary tumour, let me check with my onc..
Hi Netta, may I ask was your mass palpable? It is amazing that ibrance shrunk it so much!! Mine is just only back to prebiopsy size after 4 cycles, I think mine was too hard, 2cm then became 3cm after biopsy. May I also ask if you have your ibrance after dinner? Do you take femara together with ibrance? I drink a lot of veg juice but still drinking coffee and eat some red meat, so not quite sure if I doing the right thing..
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