Bone Mets Thread
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wrathg: Xgeva and palbociclib are not mutually exclusive. My choice would be and is Xgeva for bones while I also take palbociclib with faslodex as the hormonal. My only side effect with Xgeva is I swear it gives me energy. I find I get fatigued with palbociclib and many other ladies have said the same.
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Lynne - YES, YES, YES! It's about time you get good news! What a beautiful report, I'm so happy for you! I love reading good news.
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wraithg~ if you fill out your profile we can all see what treatments and diagnosis and type of cancer you have, the wonderful team of ladies here will all chime in as to their opinions. You will learn so much here, try to relax. There are many treatments out there. I am sorry though that you are dealing with all this again. Gentle hugs and prayers as always.I currently am taking Ibrance andit's working quite well. Hope To hear from you soon!! ~M~
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50sgirl/Lynne - that is WONDERFUL news! So happy for you! I doubt there is one person who skipped that section of your post. We ALL want to hear good news about our sisters/brothers in this fight! You've been through so much you deserve to bask in the glory of some good news!!
Yay!
Cathy
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Congratulations on the good news. Please please keep it coming!! Makes battleing worth it. God bless you Lynne!! ~M~
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Lynne its news like yours that keeps us all going😉 I'm so very happy for you. Woohooo screw you cancer.
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lynne.....thats the way to do it!!!!!.....i want to be just like you when i grow up .lol
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Lynne, happy dance!!!! That is great news. I, too, have received the results from my last PET scan and it shows improvement in bone lesions and spots that were suspect on my last scan are no longer visible. So will hold the course with the X and will focus on enjoying the summer and worry about this yucky disease in the fall....lol.
Prayers and blessings to all,
Diane
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Lynne, I'm so ecstatic about your good news! I definitely would not want to skip past that! Wow that is so encouraging, and you deserve it. Keep it coming. Do something special to celebrate.
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Yay 50'sgirl, congrats!
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GrannyD3, it's so good to hear about your PET scan results. Happy dancing for you too!
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GrannyD3~ some more good news. Way to go. Happy happy joy joy!! For you. Hope you get many many more good scan results for many many years to come. Hugs!! ~M~
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Thank you all for your support. I am so touched that I have tears running down my cheeks.
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50'swirl - just got caught up! Imagine Snoopy doing his famous happydance, that is me for you! When I read your news I actually shouted Woohoo! Think I startled dh, but He was as happy at the news as I am!!!!!.
Grannax- yay for your happy news also!
Love, love, love the great news!
Hugs and prayers
C
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Lynne,
I am so very happy for your what exciting news! Thank the lord for the your "Improvements"! It is so uplifting to hear this good news. It makes me feel we can beat this...
Thank you so much for sharing.
Ronnie
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GO Lynne. Please don't hesitate to share good news. Makes everyone happy.
wraithg - odds are you can work and live and be happy on palbo AND xgeva combined. its up to you and your doc whether both are necessary. sometimes it is nice to hold some artillery in reserve. i also like figuring out what is actually working ... which is hard to say if you throw everything at the cancer at once. bone mets move slow so I would lean towards going with one or the other and see what works.
>Z<
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Lynn I am so happy fir you. It guves me hope to hear everyones good results. Z What is your opinion about my oncologist starting my treatment with ibrance faslodex and xgeva. I didnt make it thru the first round of ibrance before i got mouth problems. We started the faslidex first then ibrance while i went thru dental exam and deep cleaning then the next day started xgeva. I ended up with abcess. My wbc only got down to 2.8. Why do they use all of these drugs. He said they each are usefull. I just want your opinion please.
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My mum recently got diagnosed with stage IV BC mets (bones only). And all our lives have come to standstill since.
Her onc hasn't made any detailed treatment plan and wants to go step by step as things progress. For now he's prescribed 6 chemos in 3 weeks interval. She's done with one. The prescription also says "may require radiation if no improvement is seen". Medicines include Herceptin, Taxotere and Zometa. He has discounted any idea of having a surgery. He says he'll assess the progress after 6 chemos are completed.
Now my questions are:
1. How important is it to have a treatment plan beforehand? What do you think of doctor's step by step approach?
2. What do you think of the medicines prescribed? Are 6 chemos enough? I don't understand "if no improvement seen" thing. Is that possible?
3. Is surgery an option in bone mets case? Or never an option?
4. How soon do chemo drugs start kicking in, as in if we can see if the tumor has really started to 'shrink' Or any improvements in bone mets?
I want to hear some words of encouragement and some success stories
I'm not ready to lose my mom yet.
(The profile below is my mum's)
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My mum recently got diagnosed with stage IV BC mets (bones only). And all our lives have come to standstill since.
Her onc hasn't made any detailed treatment plan and wants to go step by step as things progress. For now he's prescribed 6 chemos in 3 weeks interval. She's done with one. The prescription also says "may require radiation if no improvement is seen". Medicines include Herceptin, Taxotere and Zometa. He has discounted any idea of having a surgery. He says he'll assess the progress after 6 chemos are completed.
Now my questions are:
1. How important is it to have a treatment plan beforehand? What do you think of doctor's step by step approach?
2. What do you think of the medicines prescribed? Are 6 chemos enough? I don't understand "if no improvement seen" thing. Is that possible?
3. Is surgery an option in bone mets case? Or never an option?
4. How soon do chemo drugs start kicking in, as in if we can see if the tumor has really started to 'shrink' Or any improvements in bone mets?
I want to hear some words of encouragement and some success stories
I'm not ready to lose my mom yet.
(The profile below is my mum's)
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Here4support~ I am sorry about your mom honey. But the fact that it's mets to bone only is a good thing. There are many treatments. Herceptin is very common with Her+ type cancer, and the chemo can see results rather quickly. If she responds to the chemo well (which is usually the case) you will know rather soon. Bone mets usually progress slowly and it sounds like they have caught them enough to know that they are present. I also have bone mets and I have little pain and I jogged last week 17 miles. Your mom isn't going anywhere too soon honey. They are treating this more often as a chronic condition. It sounds like they have a plan in place. Don't be afraid to ask the onc every question you may have. Even write them down. I have known people who have bone mets for over twenty years now. focusing on keeping it in the bone only is what they will focus on. Chemo can shrink the mets and sometimes likely to even kill them. She can do very well for many years. Take a deep breath and remember. My pallative care doctor told me yesterday, "we live in a time of cancer treatment focus". they are constantly introducing new drugs all the time we don't even know about yet. Just try to keep in focus. She isn't going anywhere anytime soon. Bone mets are the most managed mets that someone can have. Big hugs. You will find great support here and others will chime in I am sure. Good group. Lots of knowledge! I will pray for your family. Hugs ~M~
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thanks for replying, M. I really appreciate it. Have been trying to find some support and I'm glad I found this group.
As clueless as I am, I'm not able to find answers for my shocked mind... like what can I expect after 6 chemos? I kknow it's a very subjective question and everybody responds differently to the treatment. But right now I think I just want to hear "your mom will be perfectly fine", genuinely and truly.
And deep down I know and I believe this will happen, but I have my moments. I have a 5 month old daughter and I need to be happy and cheerful for her. But my mom's health is consuming me. I just can't see her in pain. I know it's a slow treatment and I got to put my faith in the doctor, his treatment and medicines.
How can I change my state of mind and how can I help her deal with pains.
I just want her to be okay and happy and smiling like before
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hi here 4, you sound just like my daughter....when i was dx (march 2015 ) all the stats said 3 to 7 months left for me. wow were they wrong and for most of these 27 months i have not been on chemo.....they can do amazing things these days!!!!....my grand daughter is about to turn 4 and it looks like i'll be dancing at my daughters wedding in september.....even tho my dx was so terrible it seems that every one but me (and my doc) thought i was going to die...i was never good at listening lol....please stay happy for your daughter and strong for your mom....she needs that,when i told people how bad it was i had to be strong for them cuz they just fell apart and that was so hard for me when all i wanted was a hug and to go into "informed denial"....i do really like and trust my doctors (thats important)....and i would ask you to come here instead of consulting Dr Google....when i found all the lovely people on this site i found that deep sense of wisdom and faith, support and understanding...i stop by to read everyday....your mom will be smiling all the time before you know it... oh and your baby will just make it easier for her to put up with everything she has to do just to hear those baby giggles...trust me i would even get into that damn halo again for my grand baby. ... so this bone mets thread is my favorite and i hope you and your mom find what youre looking for here. i also read "life does not end with a stage 4 dx really ", amazing souls everywhere.....and i'm so very sorry you have to be here
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Here4support~It is a slow process, chemo is no fun, she will loose her hair from the chemo and I went through 13 heavy chemo combinations, she may feel a little neuropathy in her fingers and toes. Not everyone will get that after six infusions. She may need to have a port Put into her chest for the chemo, I have one and have had it for a year and five months now and I don't even know it's there most days. If not through her veins. She will get nausea pills to help with the stomach or nausea. The first few days after chemo seem to be the worst, headache, dizziness, sometimes people get mouth sores or tenderness. There are many things to help with the side effects. Just keep track of how she's feeling and communicate that to your oncologist and they will give what is needed to lessen those as much as possible. My treatments were infused every two weeks. By the end of that first week I felt better but needed a lot of rest. Have her drink a lot of fluids so it can pass through her system and out. And dehydration has to be prevented. When her hair starts to come out, usually (for me)it was after the second treatment, my scalp felt burned slightly and sore to the touch. That's the beginning of the shedding of the hair. It will come out quickly. She will need something to keep her head warm, you would be amazed at how chilly your head gets uncovered. Her neck also perhaps if her hair is long now. She will need several caps. Also a night cap for sleeping in. They are very soft and keep your head warm during sleep. Her taste buds might change slightly, so she will become a little more fussy with foods. I know I did. Nothing too spicy, you can experience heartburn or acid stomach issues. Prilosec helps with all that. Spicy is miserable! I was overwhelmed at first, and very scared, I hate to sound cliche about finding a new normal, but for me it was very true. I was very athletic and I had to start all over again. She may never be fully herself again, but there are treatments that can help a great deal to help her live pretty comfortably and well. The hardest part is getting through the chemo. My approach was one infusion at a time. Ask oncologist about Claritin before Infusion to limit any irritants that could occur during. Also, ask for atavan for her nerves so she is calm during the infusion, if she seems nervous. I did and it helped me relax. I also took two Aleve before and made sure I was eating during infusion. Insist to the chemo nurse that they don't hurry the time of infusion, it will help her tolerate it better. For example. If they tell you her chemo will be about a half hour long to receive through infusion, ask them to make it like 45 mins or more. The slower the drip, the easier one can tolerate it better. She will be a little different and maybe be weaker, it's a rough thing chemo is, but the results to be had are there for sure. Try to realize it's just in her bones. It takes a long time for bone mets to grow. She is going to be around for a while honey. You're a good daughter. Try to focus on your little one and realize with something like this you have to tackle it day by day. You can be there for your mom, I am sure being with you both is the only thing she really cares about. So while you're being strong for everyone. Try to remember you're only human and it's normal to worry, but no one has said to you anything other than, we are going to treat this for her. There is a plan in place. Treatment is the key word. They have treatment for her. One day at a time. If you have any other questions. Post away. Lots of ladies here have been through so much, and here we all are still. Some many many years. Things will be ok. It's just hard right now. ~M~(Sorry for the book ladies , I just know how I felt with no answers and notknowing anyone who had gone through any of this ) hugs ~M~
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Here4support, like your mother, I am ER+ and HER2+ and have just completed a successful chemo.
1. A plan is critical and it sounds like the doc is using the standard protocol for her type of cancer.
2. Chemo is usually 6 or 8 and some people respond better than others.
3. Surgery is sometimes an option for stage IV but not always, it depends on how extensive the cancer has spread and if the surgeon feels that it would be beneficial for control or not. Since the intent of surgery in early stages is to be curative, it becomes almost pointless when cancer has spread to multiple areas.
4. You can see good results from chemo fairly quickly. I noticed that my tumor started shrinking within a few weeks. Now I can no longer feel it at all.
I am only 6 months out from my diagnosis but I plan on being active, healthy and happy for the next 10-20 years. Best of luck!
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Babs, keep fighting. They will find something to get those TMs down. It's a constant worry!!
Glad your feeling better Chelle. So far I've stayed away from the hospital. Glad you are doing ok.
Gracie congrats on a good scan. That's always the best news. That hasn't happened to me yet. ☹️
Wendy I can't believe Taxol did the trick. That is awesome! I'm in Newfoundland and I was thinking of you. I think I've used everything I brought to stay warm. It is so windy. Just left Bonavista after 40 mile hour winds trying to photograph Puffins. Cape St. Mary's was awesome with all of the nesting Gannets. It beautiful here but rough on my bones. Long walks but all worth it.
Babs, my daughter and son inlaw are in Israel as we speak. Going to a wedding then to Jerusalem. I hope you get there that is on my bucket list.
Hugs to all of you. We are all in this together. Thank goodness we have each other!!
Flying home Saturday so I'll have better service.
Anita
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I have just been dx with stage 4. Mets to sternum and chest wall. I don't have a lot if information yet but am so surprised that I am only being offered a chemo drug called ribociclib and possibly another hormone drug. I am 63 and have been cancer free for 13 years. Why do they notoffer me IV chemo like they did 13 years ago. They say my chest wall tumours are like tentacles. I do not have cancer in any other bones or organs. I feel so very alone and so afraid. Doc said cancer u have now is a slow growing grumbling CA. Surgery is out of the question at this point because if the span of the tumour. And the rad doc is taking a wait and see approach to see how I respond to the above mentioned treatment. I guess I don't get how this daily pill can be as effective as the big chemo I had in 2004.
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Diane and Lynne you have made my day. Soooo happy for both of you and your fabulous results. Improvement....what a fabulous word.
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Hopeful~oral therapies can be very effective and can stop and or slow the hormonal fuel in our bodies that feeds the cancer in the bone. Chemo is usually used if there is serious pain or even sometimes progression, chemo is hard on the body and they like to give you quality of life, so you would Be able to function better while containing and in some instances, shrink tumors. Without seeing your type of cancer and prior treatments, it will be hard to guess about treatments and advice on your situation. If you fill out the profile part of your account you can allow others to offer advice and thoughts from their experiences and treatments! we wish you well. We're all here, we all have bone mets also, I wish you nothing but well dealing with this and I hope your treatment is going to resolve those stinkers. ~M~
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Hi Michel.
Thank u for your quick response. I am having difficulty filling in my profile. I was originally diagnosed in 2004. Full mastectomy chemo rads and armiex. But now I am stage 4. I will keep working on trying to sort this out. Once again thank you for reaching out to me.
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Lynne!!!! How marvelous!! As always, I'm late to the party, I am connecting in at midnight from Paris! The Eiffel tower is lit up like its New Year's Eve not far from my hotel here- obviously its celebrating the happy news! Saw van Gogh paintings tonight and our group had a banquet down by the Seine- funny that when I hit the metro it occurred to me that I never thought I would see Paris again after stage IV diagnosis. So, I guess its time to make some exciting new plans, life is sweet!!
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