Bone Mets Thread
Comments
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While we are on the subject of vegan what do you have for a vegan breakfast? Breakfast is the hardest time for me as I do not feel like eating anything.
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Hi Carla,
Like you I'm pretty new to the diagnosis and having difficulty with the uncertainity. Should I retire, should I travel, when is the pain going to start, when won't I be able to do what I want. Just this weekend I watched a Netflix documentary on the Lousianna State Penitentiary at Angola. 85% of the men will die there - life sentences - so the warden started a volunteer hospice care program so that elderly and terminally ill inmates would be cared for and wouldn't die alone. Murderers, drug dealers, and bank robbers learning to change diapers, bath old men, change bandages on bed sores, and keeping vigil when the professional staff indicate that the end is near for a man. And I thought.... I am so lucky that I have the option to walk out the front door or just enjoy a second cup of coffee if I want to, or stay up late and watch a movie with a glass of wine. I'm not going to die alone - I just need to decide at what point I want to start hospice care. The documentary didn't resolve my uncertainty but it did make me feel that things are lot brighter than maybe I'd given them credit for. I'm still not scared yet - I'm guessing that's coming. Anyway, I'm very sorry to hear of all your pain - I haven't been through any really frightening procedures yet - but you're living proof that the body just keeps trying to heal itself! Hope your day is going well today. Cheers
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Thank you ladies for the responds....I'm just looking for things that will increase my life....I have been dx since April 1st 2014....Yea...it wasn't a April Fool joke either...sure wish it was...but anyhow...I kinda have the delima...having a diet for my cancer and trying to balance my diet for my colostomy also..that in itself is a challenged...have a dietitian on my crew. I'll just keep doinig what I have been doing...I eat healthy...a sweet here and there and some wine here and there...is ok via my OC...
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Tracey,
Don't count yourself out so quickly. Many stage IV survivers live 5, 10, 15 & even 20 years beyond expectations. I'm just past 5 years out and there always seem to be some kind of treatment I can follow. Use this time for "Me" time. What would you like to do if you did not have to work? Enjoy spending time with your family & friends, learn something enjoyable to you like photography, crafts, sport activities you can still do. Say no to things you do not want to do and don't feel obligated.
Enjoy every second of your life to the fullest!
Hugs,
Terri
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@Lorri: You are really encouraging me with your story. I have so much anxiety but my story is very similar to yours in that it changed over to HER2+ with bone mets two years after my early stage diagnoses. i can't wait to begin the Hercerptin.which will begin with chemo in two weeks. I'm doing radiation to my L3,L4&L5 vertebre and without any pain relief. Will my bones stop hurting is I get this cancer out of them? I'm so terrified of this getting worse. Thank God for Herceptin. I'd love to chat with you some time in the next couple weeks.
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Missing Alley
I have a Her2 (1+). My MO nurse said that DX was really negative DX. I have info I am bringing with me to my next appt this Thursday about docs using Herceptin on this kind of DX. I have a close friend who works for Genentech. I have questions for him about my DX and the use of Perjeta as well. Will keep you posted.
I had my L 3,4,5 radiated. Did not help a whole lot but it is a lot better than not doing the radiation. You have to add pain meds to keep pain in check. I should not be saying this as I am really bad at taking pain meds! But I have to admit they do work. I reserve them for days I do not feel like dealing with any aches or pains.
I read an article about Heceptin on BCO. It was on the home page. It said Herceptin worked well for Her2 positive for longer term survival. Gave very favorable review. I hope I can get it onboard in my regimen!
Just message me anytime.
Positive thoughts to all of us!
Lorri
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I'm in the middle of neoadjuvant chemo for a 6.2 cm stage III local recurrence, so it is absolutely surreal to be joining you ladies here. My last chemo was a week ago, and after complaining that I thought I must have broken my rib from vomiting so much the bottom line is that many scans, tests and a biopsy later, I was confirmed stage IV today with 3 lytic lesions in my ribs. It is so hard for me to understand that this is really happening.
My entire treatment plan has changed now and it seems obvious that curing is no longer the goal, just controlling. My current regimen is Taxotere, carboPlatin, Herceptin and Perjeta. They're taking away the carbo and I'm finishing out my last 3 cycles of the rest, then Herceptin & Perjeta every 3 wks indefinitely, I guess - they said until it stops working. Also starting Tamoxifen and Lupron right away and Zometa. What I can't understand is that they said we're not doing surgery now to remove my primary tumor. This seems crazy to me, but I checked the ASCO guidelines when I got home and it seems to be the case.
My MO said that they treat this as a chronic disease until they can't - and that until they've exhausted all lines of treatment I'm not dying. She said with just bone mets it's very reasonable to expect to live 5 years or even 10 or more. Is this really true? I feel like she's just trying to keep me positive. I'm a single mom to an 8 year old little boy with Asperger's - the thought of not being here for him is crushing. Trying to stay optimistic but I feel like I've been kicked in the stomach repeatedly. This is just such a shock.
How do you do this? How do you get through this initial part? I'm so run down from chemo already and trying to process and deal with this seems impossible.
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To those asking about diet, I would also add the book "Nature's Cancer Fighting Foods" to Deanna's recommendations. When my recurrence was dx in July, I became vegan and no added sugar - no added sugar because cancer cells have 8-10x the amount of glucose receptors as healthy cells, and vegan because there's convincing evidence (to me) that they contribute to breast cancer (prostate and colon cancer too, I believe).
For vegan breakfast, which I agree is harder, I usually eat warm quinoa with almond milk and either blueberries, blackberries or stone fruit. Also, you can find a lot of vegan breakfast food in the gluten free section/aisle as many with gluten allergies also have dairy and egg allergies (however I find most of these to be too high in sugar). Another go to for me, especially right now because it seems to help with the metal mouth I have from chemo, is toast with peanut butter.
Hope that helps!
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Hi Ella,
Welcome to the group; sorry you're here but glad you've found us. I have bone mets and my MO said that he thinks 10 to 15 years is a reasonable expectation for me, and he thinks that with the advances they're making, if we can keep things under control for just 3 or 4 more years, there will be targeted therapies that will make this a manageable disease, similar to diabetes or high blood pressure. So don't give up on yourself or your future! It's a hell of a shock, and it takes a while to wrap your brain (and emotions) around it, but it does get better with time on the emotional/mental front. Antidepressants and therapy help too, so don't be afraid to ask for help in dealing with this diagnosis. And yes, the treatment plan is different. There is a lot of good support here!
Hugs,
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Hello Ella! I can relate to where you are coming from. I was diagnosed Stage IV from the starting gate. Still wrapping my head around it. I have to say, reading posts from other Stage IV ladies who have survived 5-10 years has helped, but I still find myself waking up at night in panic mode.
It looks like we are on a similar treatment plan and we started on the same day! My Onc removed one chemo drug (it may have been carboplatin?) from the plan after we learned of the bone mets. He said it was no longer necessary since they could not guarantee that they could kill every rouge cell, and the plan now was a gentler chemo that would shrink the tumors. I haven't had too many problems with the Taxotere. The side effects I've had were mostly from the Xgevia I get every other round to strengthen my bones. Are you doing 6 rounds every 3 weeks? I was also confused that they did not want to remove the primary tumor, but she said that studies had shown that it made no difference in the long run. My hope is that it is that the chemo shrinks it down to nothing.
A question for others with bone mets....what do you do for exercise? I still have back pain/stiffness after radiation to my vertebrae, and pain from the tumor in my pelvis. I take Alieve during the day and if needed something stronger at night. The radiologist says it will take time for scar tissue to build up and strengthen my vertebrae. I have slight compression fractures. I feel great when sitting, but every time I try to lift anything or walk more than a block, the pain sets in. I've considered yoga and belly dance, but I really miss my Bollywood dance class! I'll bring this up with my doc at our next visit, but I wonder if anyone had tips. I don't know if my pain is because I'm sitting too much and getting stiff!
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Kiwi, that's encouraging to hear 3 or 4 more years. I've been at this for 7 years now (diagnosed stage 4 at the start), 6.5 years with NED.
Regarding sugar, I haven't banned it from my life but I am very active and watch that I don't gain weight. I figure I still need some calories to burn and sometimes sweets are what's readily available in my fridge. Most carb-containing foods contain glucose so I try to choose the ones that can give me more that just sweetness.
Shutterbug, I would do whatever exercise doesn't cause you pain. Dancing to Bollywood music with just your arms, for example, is still exercise. I used to do this with 70s music for 1 hour in the morning and often another hour in the evening after radiation therapy to my spine, axilla and chest. My doctor heartily approved. So ask your doctor what you can do, maybe he'll even prescribe physical therapy. I actually think everyone with bone mets should be getting some kind of pt, so we can learn what movements are best for our particular circumstances.
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I like the idea of arm dancing, Heidihill. Congratulations on your 6.5 years with NED!
I personally think the vaccine trials that are happening now look very promising, and I hope we will see something come out of them in the next few years. There is always hope for the future.
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Thanks, Terri. I got some very heartening news today from my employer's disability program staff. A lot less to worry about than I had thought.
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Welcome Ella,
So sorry that you find yourself here but glad you found the group. They have helped me a great deal these past couple of months since I find out I was Stage IV.
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Ella-in reading your post I see the doctor said they were not going to remove your tumor.
Question for all-is this true with anyone else?
I never had a mammogram for this reoccurance. But I have noticed a red area around my original incision in the last few days. Seeing my MO this Thursday. Going to have him take a look at it.
Heidihill-I agree with physical therapy. I went and had a plan made that I do at home. It is helping with my pain and range of motion. I am very glad that I went.
Shutterbug/Heidihill-I think dancing is a great idea! It makes me smile just thinking about it! It keeps those happy endorphins flowing! I'm adding this one to my list of "exercises" that I do.
Tracy-glad to hear about your good news!
Lorri
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Tracey, Your post is wonderful...a real treasure. I was dx'd one year ago and stats on prognosis are grim However my real life stats took me to some actual realizations. I really enjoy all the days that I have, living and loving husband and friends and family. Yes I will arrive at a point that this disease will blur the enjoyment of the day's offerings because of the distractions that symptoms bring.
Early on hubby and I finished all the"stuuf" that was always a "bother"..end of life planning etc. We then took a big breath and moved on to grab the day and all its worth. I am now seeing things, doing things and enjoying things so much more. Yes in time to come I realize that my hospice need will appear but until that time it is my time to really live each day. It's been a really good year..it is time now to go out and plant some new spring bulbs. Peg
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Freebird, Welcome and much support from the women here....very helpful. I just noticed that you were Her2+ on your earlier dx. Your ER+ and (if so now) Her2+ status places you in a good position for positive treatment options. I also am +ER, and +her2neu. I am currently taking Herceptin and Faslodex in my dx MBC withmets to the lung. Very little side effects...hope that you may have that as an option if you are HER2neu + Blessings, Peg
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Hello to everyone,
Ella so sorry you have reason to join us here. There are so many strong women here with so much knowledge that will help you through this. I am newly diagnosed Stage IV as of September this year. I understand how shocking this must be to you. I hope your treatment brings you positive results.
Heidihill, how awesome to be NED for 6.5 years! Here's hoping for many more years to come. Just curious what treatment has been so beneficial to you? So nice to hear of your positive news, it makes me feel good and is very encouraging! Thanks for sharing.
Tracey, glad to hear you received some good news and hope there's more to come! We both received our stage IV diagnosis in September of this year and I like you am grateful to have received so much help here.
Terri, just noticed that you are 5 years out from your diagnosis. So nice to see your treatments have worked so well, that is so encouraging!
Well I received some positive news today! I saw the orthopedic oncolgist at the cancer centre and they took a new x-ray of my left arm. There is a lytic lesion in my humerus but he feels I only have a 10% chance of a fracture so he wants me to have radiation to it first. He said if the cancer cells are killed off the bone can heal itself but he will be monitoring me every 6 weeks. So no surgery for now and I am so relieved. He also looked at the scan where I was told I have a bone met on L5 and said he's not positive that's what it is. It could represent an arthritic change. That would be nice! Anyway he felt very positive about my treatment and I left there feeling a little less stressed. It makes me feel good that he's keeping a close eye on things.
Hugs to all,
Annie
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me too dunesleeper! Wake up every am, between 2 & 5, and just stay up... Bah
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Lorlyn, they removed my tumor after chemo and after I was already NED.
There's an argument to be made for local control, particularly after a complete response, as I had. My rads followed after surgery - more local measures. At that time I started systemic hormonal therapy, which is ongoing. Currently I am on Arimidex, after two years of Tamoxifen before that and 4.5 years of Femara before that. That's my treatment in a nutshell, annieoakley. My doctor switched me when my complaints got too annoying, I think. Over the years, he's encouraged me to take aspirin, metformin, melatonin and an antihistamine, not all at the same time, for their potential anticancer benefits. I don't really want to be taking so many drugs so I pick my "cure of the month" and hope I can kill some cancer cells. I tell you, the placebo effect seems to work well for me. Lol. I take antihistamines for seasonal and other allergies in any case. Oh, I also took Zometa for many years, which could be helpful in preventing bone mets spread. And I exercise most everyday since starting treatment 7 years ago.
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Welcome, Ella, although I have to add, I am heartsick and frustrated every time I see a new face of metastatic bc here. Even though October and the sea of shameless pink marketing is thankfully behind us, we have got to keep up the pressure to find new and better treatments, if not the ever-elusive "cure" we all hope and pray will also be in our futures. Anyway, I'm glad you've found us, Ella, and I hope I haven't missed anyone else new.
Great news that you don't need surgery, Annie!
As far as vegan breakfasts, I personally eat grains (Dave's Killer Breads Organic Rockin' Rye and Nature Path's Organic Oaty Bites, are two of my current faves), plus a lot of fruit, especially berries. Depending on my mood, I might use peanut, cashew or almond butter on the bread; sometimes avocado. Prior to cutting back on animal protein, I also ate egg whites, cottage cheese, and Greek yogurt. If you want something heartier, there are many recipes out there for healthy versions of waffles and pancakes. One of the best pieces of advice I've heard about breakfast, is to stop thinking that it has to be traditional breakfast fare. Think outside the box. There's absolutely no reason you can't have a salad or a sandwich or a bowl of soup, for example.
I've never understood the rationale for not removing a primary tumor, especially if mets are limited. I just cannot wrap my head around not removing that increased tumor load, although I suppose if we're only talking a few centimeters, in some cases it might be helpful to gauge the response to chemo or A/I's. But I would personally want it out.
I forget who suggested taking Anastrazole during the day, rather than at bedtime, but THANK YOU! I've only done it for three days now, but have slept better from the first night -- something I did not expect to happen that fast. Deanna
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Heidihill
I heard about aspirin and melatonin having a possible effect on the cancer cells. Going to see if I could find any research about the other ones that you had mentioned. Wouldn't it be great if something so simple could actually fight back the cancer cells!? That would be a game changer
Annie Oakley - Great news! No surgery is better than surgery! It does make you feel good when you know your oncologist is keeping a close eye on you.
Lorri
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Hi everyone, I am new and not sure how to jump into the discussions.
I have just been diagnosed with lots of bone mets and I am hoping for some advise.
I really like my MO, I just am concerned about his lack of urgency for treatment, even though my cancer metastasized while undergoing chemo. I have decided to seek a second opinion at MD Anderson. Some of my concerns are:
My MO does not think a bone biopsy is necessary.
I had to ask for tamoxifen pending hysterectomy (brca2 pos), which will not take place for a few weeks.
My MO is not concerned that I take wellbutrin with the tamoxifen.
I realize that my anxiety is probably getting the best of me.
I was wondering if anyone had any advise or would like to share what they would have done differently.
Thanks for "listening"
Kim
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Hi, Kim ~ So sorry about your very recent diagnosis, but glad you've found us and joined the conversation. I think you're very wise to seek a second opinion, but I'm curious why you would go as far as MD Anderson? Or is there an MD Anderson satellite hospital near you? MDA is certainly known for top notch cancer treatment, but so are the other top NCI-designated hospitals, some of which are much closer to where you live. That's my only thought at the moment... Deanna
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IDeanna,
Thanks for your reply, I picked MD Anderson because of the research they are doing in genetics, but you are right, UofM would probably be a good choice and it is relatively close to home. My surgeon is at karmanos, a NCI designated hospital that works with my local MO.
I have been having such a hard time deciding what to do, my husband said that he has lots of air miles, so let's go to Texas. I am not even sure about how I could participate in any MD trials!
I guess I just don't know what to do:/ I haven't had any time to learn the ropes, a few months ago I knew nothing about breast cancer.
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Yes, there is hope. I was diagnosed in 2006 with bone mets right away. My first oncologist said over the phone, and believe me I did not ask, that I had 2 to 5 years to live. I have been on all the hormone meds, a few chemos, and still going strong into my ninth year. There are just so many different meds to try. Each of my hormone meds worked around two years. When my second doctor was out for a few months her substitute could not believe she prescribed Tamoxifen because I am way past menopause. However, even that worked for two years. I was even told to take no meds last year after getting a second opinion at MD Anderson. However, I started Xeloda in January because my spot in my cervical decided to grow a bit and was causing arm pain. Hope this gives you some encouragement during this time.
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suecolo2,
That is so encouraging! Having women post long term success is a lifeline when adjusting to this new reality.
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Hi Kim - I live in SE Michigan and I am considering a second opinion at UM myself, but I am waiting for the results of my first set if scans since starting treatment first. They would certainly be in a position to advise you of any clinical trials you may be eligible for.
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thanks shutterbug, I have some thinking to do, maybe Texas is sounding good because it's so cold in northern Michigan!
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Oh boy! This stuff gets seriously painful doesn't it! I didn't take pain meds because tonight is my once a month beer. I agreed to drive someone home from the meeting so I thought it was particularly important not to take pain meds. I would have been better off with the pill. Hopefully we can head home soon. Ugh. Hope y'all are having a better night than me.
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