Bone Mets Thread
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Hi Lindalou, thank you for answering, my mets are all over from what I can understand, they are described as 'diffuse sclerotic lesions' I think that they are small but am really too scared to ask much. My shoulder has nothing to do with the mets, thankfully, and is recovering following surgery. I've never had chemo, the first breast cancer was ILC only 6mm and although hormone positive I was not required to take chemo or hormone therapy. I was 37 first time round. I can only see bleakness after 8 years of fear it seems that my worst nightmare came true. I'm so sorry to be so negative. I'm having difficulty understanding this site too, excuse my ignorance. I live in Wales somy terminology may also be slightly different .
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Hello Lynne, thank you too. I don't know which chemo, everything is a blur, it will be starting in a few weeks, I have to have a lymph node remove from my neck first as that looks malignant although it did not show up on the pet/ ct scan. Bone biopsies from the pelvis confirmed the diagnosis on Tuesday. I am truly gutted and just want to see my family grow up and so many other things to
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Vevs, welcome to a safe and inspirational place. It's a place to learn and be comforted. We have all shared your fear. I hope you have family and friends to lean on. That's important now. Your MO is starting you with good, positive predictions.
Amy and Lindalou, enjoy your holiday travels.
Carol, thanks for the smile and putting that song in my head for the day!! Roar!
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Hi Vevs, I join my voice in welcoming you to this thread. The first few months after dx can be a roller coaster, we've been there and it's not easy. I'm glad your MO has a good treatment plan in place and I'm also glad that you can share your concerns here. It's so important to let it out to people who understand. And the fact they did a biopsy is excellent so they can have the appropriate treatment. You will feel better once the treatment does its job. We are a great bunch of women here living our lives with MBC. We are here for you, ask away, vent, rant whatever you feel like. We share the good and the not so good. Sending healing vibes and hugs from Canada.
Amy - enjoy!
Carol - will look at your link later.
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Vevs- Welcome, but I wish you never were part of this. I wish that for all of us. I have lobular also, found stage 4 by mistake after an 18 year remission.
I am always preaching along with a couple others that it is important to TRY and get a second opinion from a NCI cancer affiliated center and being you are not in the states, I wonder if you could somehow hook up with a second opinion to see if the options are available to you in Wales as they are here. Usually, chemo is not a go to treatment when stage 4 is diagnosed. They save the chemo for when the hormones therapy fails. Just my opinion, but I think there are options and there are really good ones to try first. You don't want to use chemo unless all else fails.
Amy, I will be thinking of you have the time of your life !! PICS are a must to share.
Hugs Carol
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Carol, i hope your post means that your roar is back. I am louder than a lion this morning. Thank you for sharing the link.
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Lynne, I even changed my cell phone ring today to Eye of the Tiger! I feel strong and determined! And the end of the month cannot come fast enough!! I hope we giggle all of that day!!
Hugs Carol
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thank you all, it's just lovely to feel that I'm not alone in the wilderness, I'm very grateful and I'm slowly reading everything on this thread. Can anyone tell me how to save it as I have to bo back to my history to find it at the moment? 😃 Carol it's interesting what you say about the chemotherapy being a last resort, is that standard practice in the US? I have a supra clavicular lymph node that is worrying, my Ca15-3 is normal but my Ca125 is raised at 48. I am guessing that if its in my lymph nodes that my Onc wants to wipe it out?
It's so confusing, if I wasn't having chemo I wouldn't tell my children, they have lived through my first diagnosis and seen their grandfather die of pancreatic cancer in January this year. I know it will not be easy for them. Any information or support is so gratefully accepted. Sending you all big hugs from Wales xx
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My name is Elen, by the way, I am 45 and have 3 children, 22 year old daughter, 16 year old son and a 10 year old son. My husband is called Trevor and we have such a happy life together, I feel that it's all slipping through my fingers and this is breaking my heart
Elen
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Elen, it's true that hormone therapy (HT) is the first line of treatment in most cases and not specific to the US. But this is a very individual thing and your doc may have chosen to reduce the tumor load before going on HT. I am one of those who went for a second opinion and it just confirmed that what my local hospital had prescribed was the right treatment. But I was glad I went, it reassured me and would not hesitate to go for another opinion should it be required. Will your MO prescribe a bone strengthener such as Zometa or Xgeva? Most of us "metsters" have or had this tx. I'm not necessarily expecting answers, just giving some thoughts on questions you may want to ask. I know you feel your world is crumbling apart right now, it's normal to feel all kinds of emotions. Gosh I was freaking out and here I am leading a pretty normal life and feel so much better than pre dx. Your history seems complete.
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Elen- I'm hoping someone can chime in here regarding the lymph node situation and what treatment they did. The first thing is to rule out new tumor vs original tumor progression. This is interesting because when I visited with MO on Friday, he said if 18 years ago was today I would not had been treated with A/C like I was back in 1997. I did have 2 positive nodes and found that very interesting. I would be curious to contact a NCI center here and ask if you could do a long distance consult regarding treatment options. Do you know which chemo they have chosen?Hugs Carol0
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Carol, I am so happy you have your ROAR back! Thanks for posing the link, I'm going to change my phone ring to that also.
Elen, welcome but so sorry you have to be hear. With that said, it's a great place to find answers and wonderful caring women. We have all been through those first terrifying moments of a new diagnosis. Love mates (carol) has given you some good advice. Please get a second opinion! You may be able to use some new therapies and avoid chemo for a long time. Take your time to make the right decision for you. This journey is marathon not a 100 yd. dash.
Hugs to everyone here, Faith (in the future
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Alcarroll, not sure I would personally be onboard with having those kinds of smoothies 2x/day, but bless your hubby for his typical guy approach to doing something proactive! My hubby is always trying to get me to consume more protein (I'm very vegetarian, although not 100%) and gives me a hard time about needing protein shakes. If your hubby's smoothies appeal to you, they certainly sound nutritious. I'm personally okay with the flax (as long as you don't overdo it), but kale has a lot of iron -- an excess of which may not be good for us.
Here's a link someone recently posted in a bc group elsewhere. https://patienteducation.osumc.edu/Documents/Preca... I think the important thing to keep in mind is this: "The products listed below may cause problems with breast cancer or breast cancer treatment when taken in concentrated doses or a supplement form. These products are not normally harmful if they are found in the food that you eat as part of your regular diet."
We're all individual, but personally, I think things that have helped me at least stay as healthy as possible include eliminating refined sugar; severely limiting dairy and animal protein, especially anything with growth hormones; and concentrating on foods known to build our immune systems, especially berries, fermented foods (my newest addition -- great source of probiotics), mushrooms, avocado, onion, garlic, matcha green tea, dark chocolate. I have a severe wheat sensitivity, so am pretty much gluten free, except for oats. And I buy organic and in-season as much as possible.
Welcome Vevs (Elen)! I'm glad you've found us from Wales! You've already gotten some great input, and yes, I think the chemo first might have to do with your positive node(s), but a second opinion is often a wise thing to do no matter where you live, as all oncs don't think alike and there is no magic formula that will work for all of us. Sometimes experience with cases similar to ours is what's most important. Also, if it wasn't mentioned above, the rationale for saving chemo for later is that it does tear down our immune systems more than aromotese inhibitors do, so unless truly necessary, maybe not the best way to approach what we all hope will be a very long term run at this.
Carol, glad your roar is back! I knew it would be.
Wishing everyone has a fun and relaxing Labor Day weekend!
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Hi all,
Sorry if I am asking questions that have already been answered - I'm trying to keep up with the thread. I saw someone a while back mention taking notes...so I'm trying that. And sorry if I missed anyone.
Gracie - how are you feeling after your teeth work?? I have a hard time sleeping too - I'm fairly new to all of this too. Diagnosed in June - but confirmed mets to bone in July. I'm married and he is a total blessing, but I still sometimes feel alone. I'm trying to keep busy, but I still have my moments.
Rhollo - did you get a chance to look into any assistance?
Elizabeth - did you set up another appointment with your MO?
Carol - I love your ROAR!!!!!!!!!!
Eva - did you get the PET results?
Babs - CONGRATS on 45 years!! Wow - I am proud of myself for 6 (hee hee). I also agree with you about waiting for doctors - that is ridiculous!!! I had an appt the other day with the GYNO for a post op follow up at 9am - she saw me at 9:35 and the appt took less than 5 mintues. GRRR!!
Alcarroll - today is your oncologist appt, right?? Positive thoughts
PattyPeppermint - Glad you are having good days!!!!!!!!!
Iwrite - quarterly - yay!!!
My GYNO recommends a plant based diet. From what I've been reading here - that is probably best. I had gastric bypass surgery in 2007 - so protein is a challenge for me, but I can just keep doing my protein drinks. I found a recipe for avocado bread and it calls for CHIA seeds (to mix with water as a replacement for eggs) - is this ok when you are ER+??
I also have been told to get a product called Cellular Tea. My MO said it was fine since it has no estrogen in it. Anyone ever heard of it??
Sorry for the long post
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Thank you all, I'm hoping that I have reached the bottom as far as the bad news goes, once the lymph node is sent for histology it may become clearer. It is great to be part of your community and although I have no desire to be here from a patients perspective it is lovely to feel understood and supported. So, I must ask, my Oncologist, who seems very proficient, has told me that, in my case, as the original BC was 8 years ago and that the bone tumour biopsy showed a low mitotic something and that the cancer is not aggressive that I could live for decades and that it can be managed. Yet when I ask Google my stomach does a 360 degree flip and my heart breaks. Every one of you here understands more than I do about bone mets, is long term management realistic or is my Oncologist on happy pills? As a point of interest my bone biopsy was sent to Phoenix, Arizona for testing, you are so lucky to have such excellent medical services in the US
Elen
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Elen,
I did the same thing with Google searches early on. Listen to your doctor. There have been so many new treatments and mbc is so complex and varied, only your doctor knows your information. No one can make a concrete prediction, but, yes, there are many mbc patients living for many years. I remember when I was first diagnosed being thrilled anytime a doc said the word "years" because, after reading Google stuff, I was thinking "months."
It's a new way of life, but it is life. And we are here to help.
Btw, my mbc came after having 2 separate stage 0 breast cancers 7 years apart. I'm a weird story.
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Elen, We are all individual but general consensus on the survival stats is that they are outdated, are not segregated by receptor type or much else it seems, and old enough to not take into account some of the fairly breakthrough worthy treatments which have come out recently. Search on BCO for some of the 10+ years threads. If you are on Facebook, I can also direct you to a Thriving Group which has a post pinned to the top where long term metsters share their stories. Have hope!
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Thank you both,
Kaption, that is a strange one, I thought that my initial tumour was tiny, yours was almost not there! Jennifer, I have had to come off Facebook for a bit as I am wallowing in the most horrendous self pity so even seeing someone else smile in a selfie at the moment can set me off on one. I will no doubt be back on soon. I just need to breathe and read back through this thread for positives
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I've been thinking about dropping off the facebook groups too. For now, I've turned off alerts when people post so that I can just go on them when I feel up to it. Take good care - this is all so overwhelming at times.
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hope everyone has a safe, fun labor day weekend.
Hugs
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Vevs welcome to our little group I hope you find it as great as I have. If someone would have told me that after my diagnosis (which I saw as a death sentence of the highest degree) that I would be so happy and fitter than I ever have been and feeling so great 1 1/2 years in. That I would have met and made so many wonderful friends , that I would have joined a dragon boat team and be winning medals and traveling around the country competing. I would have told them they are full of you know what. We never know how things will play out even our oncologists don't. So never ever loose hope forge on things will get better. 😊
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Hi to all
Welcome to new members. Sorry for why you are here but there is much support, kindness and knowledge here.
I am looking into the embraca trial, as I am brca 2 positive and looking at a possible treatment change in a month if afinitor does not take care of some new progression in my neck and SI joint. Lots of things to consider as the trial is in seattle. I am open to hearing any opinions that maybe out there.
Elen and others were discussing diet. I too try to stick with plant based and organic as much as possible. My basil and eggplant from my garden are some of my favorites. I do treat myself to grassfed organic beef or baffalo about every other week. And I have ice cream about once a week. Having my treats helps me maintain a healthier diet long term.
Peace to all
Mary
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Mary, do you have any pain in your SI joint? I just had some progression there as well. I don't feel any pain walking but sometimes when I first get up from Restingfeel a sore area. I am now neurotic as in paranoid.
Hugs, Carol
PS basil is about all gone here.
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Interesting, Carol.
I have BOTH bone mets and internal organ mets (liver, adrenals, kidneys, pancreas, bladder), and they started me w/chemo first (Xeloda), NOT hormone Tx. Is that because it's in my organs, too?
I'm a newbie, never had BC previously. Thanks.
L
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L, Each case is looked at so differently. How have you been doing on X? Maybe in your situation with more than one organ involved they wanted a faster result and you will do hormones after you respond. Did they have you do any genetic testing etc? Are you at a NCI center or close to one just to get another opinion?
Hugs, Carol
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Carol, I'm about halfway thru X; six months will end the last part of November. They'll do another scan Oct 31. The radiation shrunk the biggest tumor at T3 vertebrae about 10%, but I'm still having pain in lumbar spine, part of which is because of degenerative arthritis and four bulging discs along w/four compression fractures.
Handling X okay. First follow up scan late July didn't show much difference; they're hoping the Oct one will show better results.
No genetic testing as none of my other female relatives, g'parents, etc., had this.
Went to see NP oncologist who specializes in BC here in No Cal, and she agrees w/tx plan for my case.
Thanks.
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John's Hopkins does a remote/online second opinion
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wendy. Very Inspiring. Glad you posted. What is dragon boat racing ?
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Hey Patty this is dragon boat racing.0 -
Wendy. Cool. Now that looks like fun. How did you get started in that ?
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