Bone Mets Thread
Comments
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LovesM thanks for making me chuckle. It may make sense the idea of the hormone thing. Interesting.
LindaE i would be interested in read this, but I can't access it either. How do we go to this things? I tried romansma name but it did not come up.
Just got the MRI of the brain back also, the lesions are alllll still there, and the range of sizes got bigger! So that's not good! Dani is not happy, i did not even tell her about this yet, and my sil and I won't even at this time tell her, it's bad enough that things are not moving away!
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Hi LindaLou
I don't post much but do read almost every day! I also had terrible feet and leg cramps while on Ibrance and Faslodex. Low Magnesium was another
culprit! I found that something as simple as" bed socks" (soft furry type) stopped the cramps completely and years later they still do! I noticed that my
feet were very cold when it happened even though I was under a duvet and the rest of my body was warm. Can't hurt to try!!
SusanAnn
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Good Morning
I am shortly off to MO to see if they will schedule a pet scan due to femour pain. My mri was clear and mostly I want to be the ostrich with my head in the sand. But I will listen and do what is recomended. I am still in a fog of grief missing my mom and remembering her heroic struggle to hang on to life in the last 5 years.
Momallthetime you are in my thoughts today. I trust you are on top of this. The questions I would ask are What is the specific evidence of stability and what is the specific evidence of progression. Wishing you and Dani well.
Lynne Wishing you and your husband well. I am on that similar path of poor diet, way too much sugar and no exercise. I am hoping to turn it around. Let me know how you are doing.
I keep reading so I am worried that Patty is not posting. Thinking of you Patty and wishing you peace.
Lindalou hello to you. I am so greatful for how you reach out to me and others.
I am off to a social occasion tonight with many friends from my last job. They are all so kind and I hope I can enjoy the night without being a bundle of tears.
Peace to all
Mary
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babs,
Here is a link to the thread about the MBC project.
https://community.breastcancer.org/forum/8/topics/...
ETA: Here is a direct link to the MBC Project:
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Mary good luck to you with your pet scan. Your mom is going to give you her strength and will watch over you. Look for signs and your heart will begin to heal. Hugs.
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Mom,
I completely understand your 180 degrees of confusion, stable, progression, slight, extreme, YIKES it's enough to make us go crazy. My last report was very similar to yours and the bottom line is, while you have wide-spread bony mets, they are healing, many have healed and only a couple of have increased in size. Those were the ones I had radiated which kicked them to the curb in short order.
I'm learning that these radiologists have to cover all their bases so they report everything they see - I swear if they saw a freckle they'd report it. All in all, I think it sounds good and mind you I am merely comparing my recent scans to what is written in yours.
Thanks all for the good train trip wishes. My WBC bounced from 1.1 to 9.0 in 10 days. My ANC went from .8 to 7.8 so I am back and ready to fight those germs, but it also means I need to get back to Ibrance. Hopefully the lower dose will not hit my poor blood so hard.
Lynne, I'm sorry your TM's are ugly again, but you have a good attitude, they're not higher. I'll pray they start coming down ASAP.
Take care dear friends -
Amy
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Hi all!
MomATT, Here's the link for androgen thread. I experienced the "progression with stability" talk & it turned out for me anyway, that healing can look like progression. With my next scan, I was stable. I don't know if this is the case but just my experience.
Amy, do enjoy your trip. I took the train from vancouver to Calgary once, it was lovely. I wipe down door handles etc, even when I'm not immune compromised, so wipe, wipe away!!
Good to see everyone, I must run, I'm supposed to be packing to head to Vancouver today, not sitting here reading!
cheers, Dee
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https://www.facebook.com/SeanHannity/posts/10156887895245389
I'm here to share my views with my BC sisters. I know most of you don't follow Sean on Fox (Faux as you call it) but I do watch CNN ( Clinton News Network) so I don't miss much!!
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Dee you have a lovely day for the drive enjoy the scenery.
Susan thanks for the tip been trying to up my magnesium levels through food but the sock tip I will definitely try out. Nothing worse than springing out of bed in the middle of the night and dancing around the room like a fool.
Good luck to all who have scans and Onc appointments. I'm thinking of you all.
Wendy
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I wish I could add helpful words to all of the good advice here but being such a newbie I can only say good luck to those with scans and results, and enjoy to those embarking on great adventures and whatever today holds. Also just want to say how wonderful this group is - what a source of strength, love and wisdom.
I'm off to meet with my breast surgeon this morning to discuss what we'll do with the cancer in my breast...nervous but excited to be moving forward.
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Hi Ladies,
Thanks for the tips with muscle cramps. SusanAnn,I will try the sock remedy and last night I put soap at the end of the sheets and my dh thought I had lost it! Momma, My dad used to drink Quinine. I'll see if I can find it. Maybe old fashioned Tonic water would do the trick. The added magnesium seems to be helping a bit already, and I had to laugh at what you said Wendy about getting up and dancing around the room! I hate those night time cramps that come out of nowhere and I have to walk them out. I think if I had a night vision camera we'd all have a laugh!
Jennifer...let us know how your appt. went.
Amy, your counts went up just ini time for your trip.
Mary, thinking of you and wishing you well with your scan, and enjoy tonight with your friends.
Babs, how are you feeling?
Results of my thyroid scan aren't in yet, and dh's prostate lab is not either. Keeping busy......
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Sue- Sclertoic means healed over? Right? maybe worse than the last time means more healing!! Wonderful that TM are going down!!0
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Hello everyone,
Amy and Dee - enjoy your travels! Sounds like fun!
Loved the blog post...particularly the bus analogy!
I saw a note on the Ibrance thread that Patty was home, but having some back pain and extreme tiredness...
The soap under the sheets at the foot of the bed does seem to help with leg cramps and starting out with socks on seems to help too. DH isn't a fan of the cold feet. Those hotel soaps are easier to hide than a big bar of Dove. My daughters make ruthless fun of me for putting the soap there, so evidently neither of them have leg cramps yet:)
Good scan results at the 6 month mark thank goodness! As others have said, the beast slumbers.
Both daughters are asking whether I would consider a bilateral mastectomy now that the scans are good. I think my DDs just want this to be cured and because surgery often works with stages I - III they think it is the answer. My initial feeling is that if it buys me an extra nine months without progression, but takes away six months to recover along with stressful decisions about reconstruction and concerns about lymphodema, the benefits may not outweigh the risks. Plus, I've been looking for some science to support a decision to have the surgery and it is scarce. At 64 it's a different decision than it would have been in my 30s or 40s. (What good are perky girls if 1. gravity has done its business everywhere else and 2. I won't have any sensation?) Frankly, with all this estrogen depletion, I mostly desire potato chips...
Wishing you all a good weekend!
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Kathryn my original BC was also ilc. When I got dx stage4 it never came back in the breast and that was with an 18 year remission. My MO said lobular is famous for going straight to the bones.
I asked the same question about getting rid of the girls now I bet they won't encourage you to do it.
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Kathryn, great news on your scan results! WooHoo!!! And thanks for the update on Patty. Not sure I saw her post on the Ibrance thread, but will look again.
Amy, have a wonderful, germ-free trip! How many hours does it take going by train? Hopefully, you have a good book or two with you.
The soap under the sheets trick had always worked for me, but not since the severe leg cramps I now get with Ibrance. What I've found helps the most is to immediately get up and put your foot (or feet) flat on the floor. That seems to stop the cramping for me. I'll have to try the socks. Thanks for the tip, SusanAnn.
Bosco, good to see you back! And great news on the scan results, but wow, what a rough time it sounds like you've had the past couple of months! I need to go back and look at your previous posts to recall what set that off (dehydration maybe?), but so glad you pulled through!!!!!
Have a great weekend, everyone!
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Sue I have spinal stenosis along with degenerate disease in my L/3-4 S 1 Had surgery for all degenerate disease in 2008. When I started to have pain again I thought for sure it was the narrowing stenosis and disks again. Wish it had been that instead of cancer. I wish my TM would go down just even a few points. They just creep up slowly each month. Have a great weekend !
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Jennifer, I missed commenting earlier, but I'll be very interested to hear what Dr. Prati had to tell you. You are so fortunate to have such a fantastic BS. Be sure to let us know how your appt. goes! Fingers crossed that it was all good! Deanna
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I didn't realize how under-prepared emotionally I was for this appointment with my breast surgeon, who I really like. She's going to consult with my oncologist, radiation oncologist and plastic surgeon and get back to me middle of next week with the final recommendation and plan, but her thoughts today were to only remove the left breast (which is where I have a lot of breast cancer). She doesn't see a beneficial reason to remove the right breast. And she's going to get input from the team about whether reconstruction is an option (she thought it would be but because I am likely going to have radiation she wants to confer).
I told her that my first goal is to have the most beneficial impact on the active cancer but I also see preventive benefit in removing the other one while I am still healthy, I told her reconstruction is important to me and that I am most interested though in the least invasive procedure and totally fine with having small breasts as an outcome. I am not interested in having four or five surgeries. I'm a bit distressed about her only wanting to remove one breast - it's an emotional reaction I'm having. I also wasn't thrilled when she talked about this in terms of "investing." When we thought I was stage 3, she was on board at that time with a double mastectomy and reconstruction but now that I"m stage 4 there apparently isn't enough benefit for her to agree right away. I do like and trust her though, so I'll be very curious to see what the full team recommends.
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Hi again,
Deanna - hmmm... for some reason I hadn't connected the leg cramps to the Ibrance. It's good to have a back up plan when the soap fails!. My mistake...the information about Patty was on the Patty thread rather than the Ibrance one. Someone had IM'd and she'd sent her a note.
Bosco - so good to hear that you are coming out of such a tough period. Hoping life gets better and better for you in the weeks ahead!
Jennifer - Sounds like you have a great team in place! Looks like there are some positive options. Will be pulling for you!
Love Maltese - It's funny that you said with ILC things go straight to the bone. I haven't heard word one about any activity in the breast where this all began...only in the bones. Sending good vibes to you on getting TMs moving down...it would be great for you to get only great news for an extended period of time.
Sue - So glad your TMs are going down...every piece of good news helps!
Chelle - Such great news that you are pursuing your dream home!
Mary, Terre, Cristina...thinking of you.
All the best!
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I did read all of your sooo lovely helpful comments. I do wanna reread it, and think about it. I am posting below an update, (I know making everyone crazy). I am emotionally exhausted, trying to get the reports, like if I were asking for a million dollars, but we got it. And went back and forth with Onco on the phone.
So i kinda messed up, it's not Xtandi as i thought, but XOFIGO, another tx recommended for prostate cancer mets. After we spoke, the Onco explained that his reasoning is that this one is specifically recommended for bone mets, those are the customary mets from prostate cancer. He wants to add it to Ibrance/Letrozole, because he likes the way that combo did get some stability. Then I commented about her Her2+ status, so he changed his mind for now, and he thinks he would go back to Herceptin/Perjeta (which she had much progression on that), but together with Ibr/Letr. He thinks it might work differently. He's gonna look through the reports, bcs I told him as much as it sounds good, the bottom line is it did not work for her. He would do the Faslodex mix also, it's a game. She was on all that, but individually.
It's weird that the very coveted txs for Her2+ like Herceptin/Perjeta and Kadcyla (TDM1), did not work for her at all, she had much progression while on it. So he doubted the Her2+. But i reminded him, it is not dubious, bcs she had the bone biopsy and the blood biopsy both showed the status and it was +++ so that is no maybe. We just cannot figure out why it's not taking. Monday we will talk again.
On the skull there are more than 20 lesions, it's not in the brain, but one particular one, it's been close to her eye (behind), that one got larger.
Much to think about.
Wish you all a peacefull and relaxing weekend.
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MomATT, I'm going to go waaay out on a limb here and ask if Dani would ever consider going to MDAnderson for another opinion? I know she's already switched oncs at least once, maybe twice. And I get the impression you both really like the onc she's with now, who may be brilliant -- I don't know -- and there's probably no need make a total change again, but maybe just make one visit to MDA so that they can review Dan's hx and see if they can add any wisdom to her situation. I can't assure you it would even be beneficial, but with so much drug resistance and what seem like unanswered questions, if I was in your situation, I think I'd give some serious thought to harnessing all the oncology brain power I could to focus on her situation, and they're rated #1 for a reason. Just my thought as I agonize with you as both a Mother and mbc patient over what to do next. (((Hugs)))
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Mom I started to write a response to you but got side tracked with taking DH dinner out of oven to find that Deanna had just posted what i wanted to suggest. I am close enough to drive to Dana Farber (3.25 hours each way) and wanted to let you know that my diagnosis was complicated after biopsy. If I never had went to DF I would be doing a complete different protocol due to my bone biopsy results. MDA is where I would go without reservation. By doing so you have just went to the #1 rated cancer facility in the world. I compare notes with some BC sisters that have done the same as I and we have really benefited. I can share my personal story with you if you don't know what happened with me. Let me know and I will PM you. Hugs and more hugs.0
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Awe thank you Sue!! No drowning my voice! I promise!! Wish I could recruit some Trump supporter Junkies over to our political thread! Some in the group have more in common with Trump then they realize. Oops did I say Ego? It's fun and a distraction from bone mets. I don't have a mean bone in my body just some that are moth eaten but healing!!! Hugs.0
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Anyone here with anemia. I was dx last June and my red blood count and platelets were fine. After radiation and surgery to put a rod in my femur I have been severely anemic requiring multiple transfusions. My onc refuses to see a correlation and says it's from the cancer. However, I'm assuming the tumor burden was highest before treatment from rads, faslodex,zometa. He has me on the lowest dose of Ibrance 75 and 2 wks on 1 wk off and I need another transfusion. Will my blood counts improve or is this my f-ing life?? Help!
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Pretty view out my bedroom window in Montana0 -
A couple more just entering Glacier National Park
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The baby with all the power and strength.
I've traveled to many stunning places in the world, but this is one of my all-time favorites. It's so relaxing and stress-free, I may just hop the train home instead of flying.
I hope my friends are having a nice weekend. Patty, how are you?
Thinking of you Dee, Lynne, Lynn, Shetland Pony, Deanna, Sue, Loves Maltese,Caryn, Aurora and apologies to those I've missed
Amy
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Great photos, Amy! Awesome that you go right through Glacier National Park.
Rachel, I'm so sorry about the need for multiple transfusions, but chances are you and your onc are both correct. I also needed transfusions about 3 mos. after I was re-dx'd with mbc. It does take a toll on some of us, as can radiation (which I didn't have -- at least not in that time frame). OTOH, to be honest, I'm not sure why you're still on Ibrance with counts that low, since Ibrance also significantly lowers RBCs for many of us. Plus, it sounds like you have been unable to maintain 3 consecutive weeks on the med even on the lowest dose. Not sure it's the drug for you, but I'm not your onc, so not sure of his rationale. If I was in your situation, I would probably want to take a longer break from Ibrance, to see if that's the culprit -- or at least one of the culprits -- at this point.
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Dear lovely friends, I was wondering about this trick with a bar of soap "under the sheets" that many of you have been mentioning. This must have been discussed before I arrived here. Could you tell me what it means? Does it refer to leg muscle cramps? Where exactly do you place the bar of soap? And what is the reasoning behind it eradicating the pain of leg or ankle cramps? xo, Valerie
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Amy,
Wow! I am ready to book a train trip. I did lots of long train trips through India during my Peace Corps days, but I think I would appreciate it more now. Enjoy every minute
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