Bone Mets Thread
Comments
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Hi Daughterloves, Dana has a great genetic department that will guide you. The good news is that knowing you are at risk will help to totally prevent this. I'm not sure of how old you are etc but hopefully you have time to make these decisions that you have to face in the future. From the biography line, it looks like your mom was stage 4 the start? Is that so?
It is great news that the trial is working and she only has had Xeloda. Dana Farber is a top institute for MBC. They have a complete department head oncologist that is dedicated to young women as well, there is another MO that specializes in brain mets etc. The list goes on and on. Thanks for keeping us updated. I had genetic testing done at DF, I have 3 daughters, we do not carry the gene but in our meeting we were told if we did they have new variations of the gene that change the whole prognosis to great new trials. I hope this is what your mom has and keeps getting great results. Love, Carol0 -
Is degenerative arthritis the same as plain old arthritis or osteoarthritis? I ask bc I have the plain old arthritis diagnosis of my left hip which has gotten so bad my hip needs to be replaced. I've been trying to figure out how/why I have this and now I might be able to blame it on AL's - maybe. Blame doesn't fix but still I'd like answers.
I wonder if a rheumatologist would offer any insights or treatment, other than hip replacement...except I suspect since the joints are rubbing bone on bone, that can't be fixed with magic pills.
Just curious
Amy
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Amy, I have degenerate arthritis as well. I suspect mine is from the 10 years from tamoxifen and letrzole and hysterectomy that I had back in 1999. I had to have laser surgery in 2008 that fixed my L4 L5 spinal stenosis. It fixed that (and I don't have mets there) knock on wood. But my scans always say degenerate disease looks the same. I know hip replacements are easier then having a rod inserted as I had to do to Stablize my femur. QOL is so important. Don't be afraid of a hip replacement if you have pain.
Hugs, Carol
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hello ladies. Happy to report things are still going good for me. NO back pain !!! Woohoo. Migraines are getting less severe and less often. Assuming my thyroid is getting back in range.
Gracie. Happy belated birthday glad to hear femara seems to be working. Femara was kind to me for lil over 2 years
Annie. Keeping you in my prayers.
Hugs all around
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Hi ladies - thank you for welcoming me to the group. I hope I can start reading more and getting to know all of you. Since I posted previously, I have had a meeting with my oncologist and decided on an initial plan. I will be having injections of Xgeva and Faslodex, and will be taking Ibrance orally. I had my first set of injections a week ago and started the Ibrance last Friday. I go for another set of injections at the two and four week marks, and will also have some kind of a scan at the four week mark to see how things are going. It has been almost two months since my initial PET scan that showed these mets so I am hoping not too much more has been happening since then, and hopefully these meds will start helping. I am terrified that they won't. My husband has not been supportive at all, and the stress of our marriage breaking apart is really adding to my anxiety level, but I am doing my best to hold it together and continue on with normal day to day life as best I can with all of this on my mind. I haven't had a whole lot of side effects, thankfully, just occasional waves of fatigue -- frankly, I am fatigued all the time anyway with three kids, a full time job and an absent husband, so it's hard to tell if it's the meds or just my life! Anyway, hope to start reading and joining in on the conversation now. Hugs to all.
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Lemon, do you have anyone close who you can depend On?
Amy, get that hip fixed...it will only get worse. A friend from church just had hers done and she is doing fabulous, but kicking herself that she didn't do it sooner.
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Patty- I am so happy for you!! I love your smile even though I can't really see it I feel it!!
Lemon- I am so sorry to read your post about not getting the support you need. No wonder why you are tired, 3 children, anxiety, and fear that we all have would make anyone of us not feel very energetic. I can tell you are a strong person. My first set of faslodex shots had me nauseous and is causing me neuropathy- So you are doing awesome! I hope you have friends and family that can help you emotionally-
Big Hugs
Carol
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Alcarol - if the primary tumor is shrinking it does mean that letrozol is working. It doesn't necessarily mean that it is working on the bone mets. The problem with cancer is that it mutates as it spreads and we end up with multiple types of cancer. some responsive to a given drug and some not. That said, it's pretty early for the cancer to mutate around letrozol and the bone mets are most likely the same as the primary cancer. A shrinking primary tumor is a good thing and most likely you are going to have some great scans on Monday.
Let us know.
Lemon - welcome. This is this place to ask questions and complain about everything that is going wrong. It all gets a bit much, even when things are going well. But when anything goes wrong on top of the cancer, the stress and the treatment side effects, it's hard to keep things together. We've all been there. Let us know how you do.
Your onc has you on a plan that on is pretty solid and standard and works most of the time. With bone mets it often works for quite a long time. I don't want to downplay the terror. The first few months are the hardest. It is absolutely critical to work through all the feelings of loss and fear now that the universe has changed the rules on you.. But do add some hope into the mix. Bone mets are a winnable fight.
I am extremely glad your side effects are manageable as you have enough going on.
>Z<
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lemondrop. Sorry to hear about the extra stress from your dh. The load is hard enough with just fighting cancer. Raising kids. Many spouses just can't handle the stress and leave. Hoping you can work it out if that's what you want. Sometimes it's better if they leave and take all that extra stress with them. Many people can continue to work after a stage IV dx. Many people can't continue to work and go on as disability. Your stage IV dx is guaranteed to get ss disability. How old are your children ? My boys are 14 &11. Hoping you have someone else to talk to. Someone is always here so post often.
I am feeling good again today. Just so excited !! Tonight we are taking dss and their friends to the fair. I haven't been able to go in three years. So excited to see them laughing and having a great time. Usually just get pics and stories when they get home. Last night ds2 and I made a 3d replica of a plant cell for science. We made a cake and used candies to represent parts. It was so much fun. Just him and me. Usually something dh would have to take care of. Dss are enjoying me being able to be involved in so much again. Dh is glad to take a spouse with family. He's had to feel like a single father. But no one is more happy then me !!!!
Hugs all
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Patty, I am so happy, joyful, delighted, and excited for you and your family. It is so good to hear that you are feeling so good. I hope that you feel this way for many years to come. WOOHOO, WOOHOO, WOOHOO! I am dancing and celebrating your dramatic improvement.
Many hugs from, Lynne
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So happy for you Patty! Enjoy!
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Patty, Just to hear that you are able to spend time with your sons and dh, working on a school science project plus going to the fair is wonderful news! Having less pain too...... well time for a bit of celebration I'd say!
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Great News Patty. Have a wonderful time with your family tonight.
Just a bit of advice from personal experience...... Funnel Cakes, Root Beer and Roller Coasters make for a bad combination. Just sayin.... ;-)
Louis
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Patty - I just did the cell cake thing with my daughter last year. It made me cry to think that you could not be part of that in the past but now you can. I am so happy for you! The stage IV ladies all understand how sweet these moments are.
MegaYAY for your improved health.
>Z<
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Patty, so happy for you that you are feeling good and enjoying life again!
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Patty you make my heart sing !!
Hugs Carol
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Patty-so happy to hear how well you're doing and that you're enjoying your life with your family again.
Lemon-welcome. You'll find the women and men here a great source of information and support. So sorry to hear that your DH is not supportive. It's when we're having issues that we need more support-not less. I hope you have someone you can lean on now instead of him.
I went today for a heart CT due to some irregularities with my heart beat (may be from the Xeloda) but since I was almost due for my regular CT they decided to just do one-from head to knees. Ugh! Now the sucky waiting begins!!!!!
Babs
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Hang in there babs ...
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Z: Not happy to hear that cancer mutates as it spreads. Was just thinking about how each of these mets will grow and send out new little "satellites" of their own which will in turn grow and spread if not checked by the latest chemo and inhibitor. My mom's body eventually turned into one massive tumor back in the mid 70s (she had soft tissue sarcoma) before she passed.
Lita
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Lita - Bummer about the mutation, indeed. Sorry about your mom. I am still optimistic as we do have more tools.
>Z<
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Allcarrol
Welcome to the group , your question is one we all have at various times I think. Well for me my experience was after my initial diagnosis I was put on tamoxifen. My tumour in my breast shrank for four months and then I had a petscan in December and it was noted hmmmmm that I had progression to several other bones. It was hard to say for sure whether the tumour had indeed shrunk because the measurements taken were done by hand with caliphers. Best way to tell for sure is always with scans or ultrasounds. Be aware that petscans show a lot of false positives. So I guess to answer your question I would say usually yes if the tumour shrinks it should all be shrinking if it's the same cancer. I don't think there are any hard fast rules in cancer.
Thanks ladies for all your kind words regarding my horses. Been very hard but moving forward.
Has anyone heard anything from Terra? She is NED right? I hope she is enjoying herself whatever she is doing.😊
Wend
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wendy. What are calipers ? Never heard of that
Louis. Lol. Ds1's friend went with us and he threw up 3 times. Ewww
Thanks all for the support and kind words. We had an awesome time at fair !!!! We stayed 4 hours. Cottoncandy never tasted so good. I had minor back pain last night took my pain meds and went directly to sleep. Stiff this morning but not pain. I really expected more after so much walking and standing. Hallelujah
Hugs to all
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Patty those are those little metal pincher things they sometimes use to measure things
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Results are in and there's been progression. Last time in June I was NED. Now it's showing in my liver and axilla. This rots. Waiting to hear what my m o has next in her bag of tricks. She's on a flight to Seattle now so I'm expecting a call early evening. The good news is now that I'll be off Xeloda my hfs should be a thing of the past 🙏
Babs
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Babs, I am so sorry to hear about your progression. I agree, this rots big time.I am amazed that you are already looking at the bright side (no more hfs). I hope you quickly learn what your next treatment plan will be and that it knocks down those liver and axilla mets.
I hate this disease!!!
Hugs and prayers, Lynne
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Babs,
I'm so sorry to hear of your progression. Onward to a new, successful treatment!! ((Hugs)) and prayers.
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Babs, sorry you had progression. You are blessed with the best attitude of anyone on the boards!! You are a great teacher of positive attitude and I look up to you for sharing that with us. Did they mention a trial for you as a possibility?
Hugs Carol
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Babs, I am so sorry to hear about your progression. You do have a very positive attitude and I know your next treatment will beat this back.
Wendy, odd you asked about Terre. She's been on my mind and I pm'd her this morning. I haven't heard back yet.
Hugs to all, Annie
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Babs so sorry to hear. I was hoping to get to and NED on X just like you. I had progression last time and they put me on a higher dosage and a 7/7 schedule. I go this week for CT and also have to get an MRI because I've been having a lot of pain in my left hip. I will be watching to see what they put you on next because that is probably what I will go on next.
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Babs, I'm really sorry to hear your news. This just plain sucks. I hope you get to talk with your MO soon so that you armed with a plan. (((hugs)))
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