Bone Mets Thread
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illimae and Rachel, my heart is with you both. Hopefully, these findings, if mets, are extremely early and can be zapped. But no doubt your news has stunned us all. Praying for you both.
Love the bracelet, Wendy. Happy Thanksgiving to you and all our Canadian sisters.
Hoping everyone finds some joy in the upcoming weekend.
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Finally heard back from my mo today. They are going to hold the XGeva in October. So my next shot will be the last of November. Makes me feel a little better
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Babs- Every time you post I have to go look up GDC0077 again- its the PI3K inhibitor! So wonderful news, what combo do you have with it? Side effects? Did you have Affintor previously- if so, are the SEs better (I hope!).. more info, please!
illimae and anyone else with new brain mets, remember to add Abemaciclib to the list of meds you ask you MO about- is Ibrance-like but supposed to work on brain mets too, and was just FDA approved -can be used in combination with hormone inhibitors but is also in trials with immunotherapy added to it, ask if you want us to look some up for you! And say what part of the country you are from, or willing to travel to..
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Cure-ious
I take the GDC0077 with Letrozole. I'm not experiencing any side effects other than being tired-but that could also be from everything! And no, I didn't take affinitor. Look at the thread I started for more info.
Babs
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My deepest heart felt prayers are with you both Mae and Rachel!!!
Hooray Babs!!! And a baby coming soon!!!! ❤️❤️❤️
Beautiful bracelet Wendy !!! Have a wonderful thanksgiving!
Dh and I have been considering the option of a medical retirement from the police force. His brain has not healed completely and he is having a difficult time trying to handle the stress of just hanging around the station..... life is constantly changing!!!!
Love Chelle.
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Chelle. So true about life. It throws us so many curve balls and we just have to keep bobbing and weaving!
Bab
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So, no other changes and the spot on the bone is healing. MObelieves that some rogue cells made it to the brain before chemo but were too small to show up on my original tests. I zap these on the 20th and move on.
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illimae, I'm happy to learn that everything else is stable for you. Sounds like you have a great medical team and great attitude about blasting those nasty little rogue invaders. Do you know how many RT txs you'll need? Is it just one on the 20th? That would be fabulous if it is!
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illimae. That's great news! Happy for you!
Bab
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great news, illimae!
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Yay Illimae! Keep us posted on the zapping of those little rogue buggers!
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Good news Illimae! Hope you feel better with a plan in place and "stable" everywhere else
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Illimae, That is great news that the spot on your bone is healing, WOOHOO! You must be counting the days till the 20 th.
Hugs and prayers, Lynne
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Got a call today Based upon my MRI on Friday to see why I feel numbness in my rt back thigh and rt heel they think there's a possibility of progression of one spot in my spine. If it's that they suggested Radiation of the area. I've decided to wait til my next scan in 8 weeks so they can compare Ct scan to Ct scan as opposed to MRI to CT scan. I was only worried I'd be out of the trial but they assured me I would not. There was a significant decrease in my liver mets in just 8 weeks! Unfortunately in the study they do Ct scans not pet so I don't know about my SUV levels.
It's always something with this damned disease.
My DD is coming home tonight for 3 weeks She then moves to Paris to be with her DH and to give birth to her son. I plan on cherishing these 3 weeks. I'll miss her sooo much when she gives up her apt here but we're going there for 3 weeks when the baby is born and she's still working here so she'll be back and forth.
Babs
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Yes, just one rads treatment for the lesions on the 20th and I am very pleased to have confirmation on the hip bone, as there was a lot of back and forth in June because the radiologist said progression and my MO said healing. I thought it was healing too, so yay!
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Illimae, that's good news! And the rest stable! Glad they got you some answers quickly!!!
Babs! So glad about the liver mets! Now to get the one causing you trouble!!! Have a wonderful time with your daughter
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Illimae congrats on the good news.
Babs - that three weeks will fly by but i am happy for the many good things in your life.
>Z<
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Illimae! We can all exhale a little?!?! Good news is GOOOOOD! Oh, I'm so happy for you!
Babs, I will be thinking of you-- my oldest DD is arriving in the morning to stay the week, which means I get to have my just-turned-3yo granddaughter and 4mo grandson here 24/7 with all their snuggles and giggles. It will be crazy time for me and my infernal fatigue but golly, do I love having them here! DD's husband has to travel for work this week, and she is in a sleep deprivation jam with the children's lob-lolly nap schedules right now, and besides that just really has her hands full. SO: time for Lulubee here to put on her SuperMimi suit!! Which is kind of a joke because I had my weekly Taxol today, third of three for the month, so I rather expect to be totally wiped out by the time they depart.
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Lulubee...pace yourself. If everything doesn't get done, let it go. Just nap with the kids when you have to and try to enjoy the time with them even tho you're fatigued from Taxol.
I know what you're going thru...I'm on weekly Taxol too. Third infusion of the month is the roughest because we get to the nadir (lowest point) of the cycle and WBCs really plummet, leaving us fatigued and vulnerable to infections. Hope the kids are healthy. You don't want to catch a cold or the flu on top of everything else.
L
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Lulubee. Enjoy every minute with your grandkids. They're the reason we fight this damned disease and go thru all we do. But, as Lita said, rest when they're resting.
Illimae great news on the hip bone too. You need to celebrate
Babs
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Gentle hugs for all, those with the good news and those with the disappointing news. I'm off to the Maldives for a couple of weeks starting this weekend, but I'll catch up when I return.
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Such good news!! I think I really was holding my breath for Mae and Babs! As I read the posts,I let out a big sigh of relief!!
Lulubee- you are a super Mimi! I have always admired your spunk! Enjoy the heck out of those babies!!!
Take care of yourselves. Praying for a pain free week and very boring scans! Love to all of you!!!
Chelle
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Also, I know TM's are only useful in conjunction with other info, like scans but my MO has never used them and I've been curious about the number. As I understand normal is 0-25 and mine came in at 12, with the scans, I'll take it as a sign of good control.
Thanks again everyone, the brain mets were a tough blow but I intend to defy the stats on QoL and Overall Survival
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Bluefrog really??? a little peace that's all we want.
Illimae good that you are taking the bull by the horn, so sorry you have to deal with this.
There is lots going on here. Dani went through a very hard time, having gross Hematuria with total negligence from the Hospital. Then a CT was done that showed progression. So she is off the trial. Onco completely ignored her, saying she is looking for options. It's been 2 weeks, WTH??
Anyway moving on, and today she had new scans, so tom we'll see what brings with the answers. There is a new doc in town, new place, and he is recommending Neratinib. Tom is gonna be the main conversation, but i got some advice from dif doctors - Abemaciclib, Pembro - and of course chemo, and they want ME to decide. Hmm - i don't know, we'll see tom what he says. I did some reading, but it's been so crazy with doctors appointments, that I barely have time for a/t else.
We'll be in touch everyone.
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Mom, I am sorry that Dani has experienced progression, that the onc is not responsive, and that you and Dani are going through so much (again). You must be exhausted, both physically and emotionally. I don't know how you do it, but I know the explanation - You do it because you must. You and Dani are in my prayers. Take care of yourself, please. Keep us updated when you have a chance.
Hugs and prayers, Lynne
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Momma, I was thinking of you today. So sorry you and Dani are facing another hurdle and that she is off the trial. How does Dani feel about it all? She is beyond fortunate to have you by her side every step of the way. I echo what Lynne has so eloquently said.
illimae, we are with you.
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Mom, hope they come up with a viable solution, and give you some answers.
They want YOU choose the Tx? What the eff?
The new team needs to go over Dani's Tx history and choose what they thinks will work the best. Giving you a bunch of options and saying "pick one" is like throwing darts at a damn board.
These people are oncologists! They should already KNOW the pros and cons of each option and what its potential for actually working might be. Their job is to help guide you thru this mess. A competent dr would say, "I would go with X because it has a good track record with mets and progression..."
That one dr recommended Neratinib. Did he say WHY, so it would help you make a decision?
L
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Hi Lita, my cousin had WBR. Although she did not complete the whole treatment because of DIC ( serious bleeding condition), she completed the majority of it. Results turned out to be very good. Vision got improved, not feeling dizzy any more. More importantly, the mets in her meninges shrank! She was lucky that there was not much side effects other than losing hair. She was very worried about losing memory as well, but it did not happen to her. My aunt who had WBR for lung cancer did experience losing memory, but she only forgot how she suffered from headache. That might not be bad for her! It’s really that different people experience different side effects. The good side about WBR is that it seems to stop or postpone progression. That really makes me think WBR is not so bad like described in many articles.
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MomATT- Perhaps you can do as good a job as any of the MOs in picking the right therapy! I would ask what can be put in combination with immunotherapy, or can she do combination of immunotherapy. Should be in conjunction with something that can hit the brain mets (Abemaciclib, and whatever else they use)- Neratinib is a targeted therapy, and whether or not it works will depend on how strongly Dani's cancer happens to depend on that pathway (I think its JAK/STAT)- the only thing on the table that could give a big turnaround is immunotherapy, if it happens to work, and it has to be in combination with something. Abraxane-immunotherapy or two different immunotherapies, just push him hard on the options still on the table. You will make the best choice among whatever is offered, I am sure of that...
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you and Dani are in my prayers mom - will be thinking of you tomorrow as you weigh options and make choices
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