Bone Mets Thread
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Well, ladies... I think I'm finally ready to introduce myself. In May of this year, I joined the club no one wants to join. After months of unexplained neuropathy in both of my legs, they found a lesion on my T10. A 7.5 hour emergency spinal surgery later, here I am. I think I'm finally starting to wrap my head around it.
Not exactly what I expected to be dealing with at 42.. thankfully though, for now, the met is confined to 1 spot on my spine. They have me on Lupron (no way am I having another surgery right now), ibrance, femara. I'm also on neurotin for nerve pain. Oh, and zometa.. just had my quarterly infusion today so planning on a quiet weekend.
I hate that we all are here but also extremely grateful. The wisdom, knowledge, and compassion from the people on this site is inspiring. It's definitely lifted me on my down days.. and I thank you for that.
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Thanks all for your support and congrats. And yes the key is to spending quality time with those we love! And a great vacation doesn't hurt at all!
Nkb my tumor markers went down about 1/3 in just 28 days on GDC0077. That's huge!
Marie - how wonderful a new grandson. There is nothing like a baby to make us happy! Enjoy every moment with him.
Patty sorry to hear you haven't been well. I hope you get rid of this bug real quickly so you can spend some quality time with your boys.
Mary welcome to the best group ever. Their knowledge and support has been my life line!
Bab
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Babs- Maybe you mentioned this and I missed it, but what is GDC0077? That is exciting about going down by 1/3!
More happy scan news: After 3 months my scan today says "metabolic improvement or resolution of most of the sites of bone and bone marrow disease with a few sites of persistent but stable disease!" I don't know what the tumor markers show yet- they take a few days.
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Marie how exciting meeting your grandson today. Def makes like worth living.
Nkb yea. Great news
So many people getting great results lately. Let's def keep that up.
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Nkb. Great news. Scans are what counts not the TMs. In my case my TMs have always been indicative of what's going on with my BC so lowered TMs makes me very hopeful that I'll have good scan results next month. GDC0077 is a test drug for those with the PDIK3 CA mutation
Babs
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Typo
PIK3CA mutation
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My elder sister having right breast cancer. She is suffering from last seven months. She was in pregnancy. Last 21st aug, she has delivered a boy and a daughter. After finding this out, it has been found that the cancer is spread out all over the body. Now the pain in left leg is unbearable. After getting PET, we found it spreads thyroid gland, bone, lung, liver and brain. The doctor said it is not possible to cure. The breast caner is Er+, Pr+ and HER2+. The doc said due to pregnancy cancer is getting spread in aggressive mode. Is it possible to alive for her?0 -
Oikihiu, yes there are treatments that could possible have your sister stable for many years. I'm sure you must be terribly worried, but it's not time to panic quite yet. Wait until your sister's doctor comes up with a treatment plan.
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Thank you all for your kind welcome!
Z I know my odds aren't good on an attempt to desensitize the receptors but I have nothing to lose with how things are going.
Tough 24 hours with terrible pain from Xeloda. I was ready to throw in the towel, but my family talked me off the ledge.
Take good care, all of you.
M
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awesome news animal crackers. So happy for you
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Babs6287- Just read your thread about this study. Wow what days at the hospital you have! I am so glad that you got away on your trip and figured out how to refrigerate your medication and enjoy your travels. I am so interested in your experience with this drug and will follow your thread. Are you still taking the Ibrance as well?
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Hello!
I haven't posted in a while and I wanted to mention that my most recent scans were stable 3 months after finishing 6 months of weekly chemo! I still have occasional aches and pains in my hips and spine where the mets are, but it is bearable. I hope I can stay stable for a long time
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Workingmom, I happy to hear that your scans show stability. Woohoo! Hopefully, the pain will continue to be bearable or even improve. Will you be moving to a new treatment plan now?
Lynne
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Babs you have made my day finally you catch a break you so deserve it enjoy it and celebrate you must be feeling better too eh? Funny the TMs go down and we start to feel like our old selves again love it. Wow so happy with all the good news Chelle you animal crackers the trend is nice to see.
Lynne you are always such a darling ☺️
Mary welcome you have found a very special group of woman that I can't do without . So much good information on treatments and SE and how to deal. Worth their weight in gold.
Patty my son told me the other day he felt like he was catching a cold I never had the Oregon oil so fast in his hand. I'm like as long as your still living with me at home you stay healthy buddy. Take care of yourself☺️
Linda how are you doing
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Marylark - there has to be a solution that doesn't leave you in so much pain you want to throw in the towel. In fact that is not a solution. That kind of pain does way more harm than good. you treatment protocol must change. Peruse bestbirds guide, get a second opinion. Go to an NCI center. It's not the end of the road when hormonals fail, but if you stay on a treatment that undermines your overall well being... that is very dangerous.
Your post concerns me a lot. One of the people I work with closely says that the first thing she looks for in her patient/clients is the will to live. There is no improving without the will to live. She sees treatments that take away that will frequently. She says she takes people off that treatment asap.
>Z<
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Good to know, Z. She sounds like a keeper. I wish more drs had thaf kind of compassion and insight.
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It sure is nice to see all the good news on this thread!!!
Wendy - I did ask for a chemo break but MO thought it was too early after only 4 cycles. So back to chemo like a good girl and scan on 22 Sept. I have been feeling better lately, eating and weight loss is stabilizing. Remind me, are you still on Taxol? Do I remember correctly that you're doing another 2 cycles? Chemo brain here.
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Nkb - no as part of the study I only take the GDC0077 and Letrizole.
Working mom. That's great news. Celebrate🎉🎉
Wendy I have been feeling better since I stopped the chemo. Only thing is I have neuropathy in my right heel and the right cheek of my buttock- so weird. Yesterday I tried acupuncture It's supposed to help that , my Lymphadema and my energy level. We'll see if it works!
Babs
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Babs and Chelle..woohoo great news for both of you!!!!! Good to hear!!
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Cathy, that's just terrific. So the aim was to go after the ER+?
Babs sure sounds like great news.it sounds very promising.
Chelle yeeh you could use some good news.
Mary sorry you are feeling HFS. Definitely see if working out the dosage could make a difference.
Zar at the risk of sounding dumb, Onco had told me that for Dani hormonals are not working, that was in the beginning of the year. The idea of giving estradiol sounds counterproductive for the ignorants like myself, how is it that we fighting the hormones and she would be given estradiol? So disappointed in Dani's treatment. The blood test showed the #s going up everywhere, and they are just pushing it through...
Maire oh that's just so special. The best medicine.
Patty I can imagine your disappointment. Hope you feel better real soon.
Lynne thanks for being so supportive always.
Lita gonna check on your thread next.
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Mom -
Estradiol is hard to understand as a treatment for hormone suppression resistant cancer. Nonetheless, there it is, in Bestbird's exceptionally researcherd guide, supported with several solid studies. I recall the original treatment for hormone receptor positive cancer was estrogen/estradiol ?!? It worked, just not as well as hormone suppression once they figured out how to do that.
However, the statistic from recent research is that 30% of women responded to estradiol after hormone suppression failed AND when it stopped working they responded to hormone suppression again. There are a small group of doctors who deploy a strategy where you cycle between hormone suppression and chemo or estrogen therapy... back and forth. It doesn't work for everyone but for those that respond, it can keep you going for a while. You might remember the awesome Stephanie who kept at stage IV for 20 years before she left us last year. For a long period that was her strategy.
Most doctors don't consider estrogen therapy but it's noy a fringe, alternative treatment like taking mushroom supplements (which I do, of course). It's research reported at ASCO.
>Z<
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Linda I have my last chemo tomorrow morning a not a moment to soon I am loosing my thumb nails now kind of upsetting. I like to remain as much as possible in one piece. Last one taking my little silver bell with me and going to ring up a storm when I'm done. Won't be the last chemo for me but I hope for a bit of a break. Why are you having such a tough time with this one so frustrating. Im so glad it's working though weight stabilization is a key indication that it's working. Your scan will be fantastic☺️. I think I have one coming up as well. I just also upped my cbd intake again the fellow at the dispensary said Icant say you will cure cancer with cannibus but it will extend things five to ten years. I actually found a government medical dispensary here in Vancouver didn't know they existed. Take care of yourself
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Z do you have any idea of how many snaps I've taken of your posts on my iPad to keep the info safe. You are really amazing. I have no idea what type of work you did before all this (chemo brain) I would hazard a guess and say something in the sciences. i appreciate you so much
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Wendy -
If and when I have progression, I am going to go into a full bore panic . My brain will stop functioning. I will need EVERYONE to remind me what I said ... and walk me through it. I am counting on you ... I get a lot out of this forum thinking through the whole business of progression and strategy, well in advance.
I learned about hormone therapy re-sensitizing first from Stephanie (Long Term Survivor) who wrote posts about estrogen therapy and re-sensitizing cancer to hormone therapy from her own experience. They are in here somewhere.
>Z<
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Wendy - Enjoy that well deserved break!!!
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Hi Z. Thanks for the encouragement. I am at an NCI cancer center (MD Anderson). Everything happened the day before Harvey hit so I was squeezed in for an appointment, got bad news about progression and a new plan all in about 10 minutes. Onc told me my kids would be fine without me - it has been a brutal couple of weeks). To top it off yesterday the pastor's wife told me her friend died of bc and her husband remarried and the whole new family is very happy -so I shouldn't worry about my family- thanks a lot.
Now I have to get my head back in the game and get back my fighting spirit.
Everyone take good care today.
Mary
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GOOD HEAVENS MARY! Talk about what not to say to an mbc'er! A couple of years ago when my DH was in ICU, of all places, he had a nurse that I nicknamed Gloomy Gus. The first thing he did was tell us everything that could go wrong for people with severe sepsis. My DH thought that the Grim Reaper might be a more appropriate name for him. I am sure that the people who told you that your family would be fine without you were trying their best to make you feel better, but my goodness, it must have been hard to keep your composure. Where is the progression? How extensive is it? What is your new tx plan? Do you know when it will begin or is that the Xeloda that you have already begun? It sounds like everything happened very quickly. Have you had time to digest the news with everything else going on? Sorry for all the questions. It must still seem a bit overwhelming right now, but we will try to help you through this.
Hugs and prayers from, Lynne
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Oh, Mary! I HAVE to say (pardon the intermittent 'roid rages I'm suffering), but that woman IS A BITCH!!!
In my current 'roid rage state, I might have punched her in the face right there for saying that. (As you know, people have been known to become very violent on steroids.) Her comments are NOT what you need to hear right now when you're fighting for your life, for God's sake!
We lost a metastatic sister a month ago, and she told us at our last meeting with her that her SISTER had ALREADY picked out a new possible partner for her late husband!!! Gee, thanks, sis!
People are SO insensitive. And no, your family is NOT going to "be just fine" without you in the first few months/years. They WILL grieve! Slowly, things may get back to normal, but there will ALWAYS be a hole left that no one else can ever completely fill. People do move on, but they never forget.
My mom passed away from soft tissue sarcoma 41 years ago, and I STILL MISS HER! She never got to see me graduate from high school, or college, or grad school; she wasn't at my wedding; she wasn't at my daughter's birth; she never got to celebrate ANY milestones with me. Oh, but I did just FINE, didn't I?
SHIZ!
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OMG. But my dad said the same thing to me. Thanks dad. WTF? We don't discuss my illness any more.
I have a whole separate set of rage related to MD Anderson and that office visit, unrelated to total insensitivity. You need different medical care, even if it is a different oncologist in MD Anderson. If you want to stay at MD Anderson, there are many good oncologists. Find a patient navigator and tell them you won't see that onc again and explain exactly why. And you still need a second opinion doctor at a different institution.
There is a way out of the box you are in. You do need a doctor or two who is a partner with same goal.
And it's all about keeping your head in the game. You've received an onslaught of bad news and you are badly shaken, but I trust you will be on here helping people out of the same mental hole years from now.
>Z<
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Mary, your pastor's wife is one of a kind. That is by far one of the most insensitive things I've ever, ever heard said to someone with mbc. WoW And not crazy about your onc's comment either. He (I'm guessing it's a he) needs to be your cheerleader. Not sure I would put my faith in him after that kind of comment, but that's just me.
Congrats on your last chemo, Wendy! Relish the upcoming break!!!
Z, back when Stephanie told us about estradiol, I had actually asked my local onc about it. He just celebrated 40 years in practice, so sometimes has an interesting POV and info, and he said that prior to A/I's, they actually did treat mbc with estradiol. In his words, "... it worked for awhile, but it always came back." But that's true of most txs, so hopefully it's another viable tx we can all keep in mind and might need to bring up to younger oncs who may not be familiar with it.
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