Bone Mets Thread
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Hi Everyone,
I'm so way behind. Sorry. Been busy with work and kids ect. The past couple days I have had ankle swelling. Any advice? Please don't tell me conjestive heart failure. Someone already told me that one and scared the crap out of me. I had an echocardiogram 2 weeks ago and my heart looked great. I think it's from Taxotere. I'm scheduled for my 9th dose on the 30th but might not want to have it. Thanks for your help. I super appreciate it. Mama ain't got time for cankles. Dana
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Hi fellow Texas mom (txmom) -- I had six cycles of neoadjuvant Taxotere back in 2010 when my cancer was still stage III. By the time the fourth cycle rolled around, my ankles started to swell in a big way. It got progressively worse until the sixth and last cycle. The swelling stuck around for about six weeks afterward and then started to subside, though it took a few months for it to completely go away. If I recall correctly, they gave me a larger dexamethasone dose to help with the swelling, but the increased dosage never completely took it away and only made me more mental, as steroids tend to do. Maybe the real "mental" feeling came from looking down at my cankles and none of my shoes fitting, ha! :-) I hope that in exchange for the annoying ankle swelling that Taxotere is doing all the good things it is known to do for the cancer itself.
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Interesting video, MomATT. Thanks for sharing it.
Daughter, hopefully your Mom will start feeling more positive when she sees that her txs are working and she feels improvement. It's so hard at first b'cuz no matter how many people tell you that the stats are outdated, those stats and the pain and fear are hard to push away. I think it takes a good 6 mos. to adjust to our new reality and decide to make the best of each day and try not to let those negative thoughts dictate our lives. And it's also very hard for us Moms to know that our mbc dx is going to impact our children's happiness, so I totally get that she's having a hard time sharing the news. I also question with elderly parents if it even makes sense to tell them, unless they're part of our daily lives. So maybe your Mom is still weighing the pros & cons of even telling her Mom, or if she must, how to break the news.
Dee, that's interesting about the researcher being un-invited to conferences. I'd be curious to know which ones. Surely not academic oncology meetings? (Maybe more Komen or similar rah-yay pink awareness type gatherings, as described in the video Mom posted?) Either way, it's despicable, and we need to continue to push back hard against this kind of thinking.
Congrats to your son (and to you!), Bosco! He must be really smart and accomplished! How exciting! And yay for two weeks in Hawaii! I will really look forward to some photos from you! As others have said, that sounds incredibly therapeutic!
Iwrite, the only input I have on counseling is, if you decide to try it, be sure you find someone who totally understands metastatic breast cancer. As a very wise psychologist at UCLA once told me (when I was first dx'd and told him a local Christian counselor had been highly recommended by friends), this is not the time to go to someone to whom you have to explain what ER+ means, or the SEs of palbociclib or whatever drug(s) you're on. You need someone who is thoroughly immersed in treating breast cancer patients, so that they get the subtle differences between a Stage IV bone mets only bc and maybe some other more imminently life-threatening Stage IV dx, and know which bc drugs might be contributing to mood issues.
I don't want to overlook anyone, but this is already long, so I think I'll wrap it up for now. I finally got our tree & house decorated. More minimalist in my approach this year than some, but I like it, and it's beginning to feel like Christmas. (((Hugs))) to all, Deanna
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Hi thanks so much. I will increase my protein and see what happens. Thanks so much for your responses. I can't be bald AND have cankles for the holidays. XO
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waving Hi , sleepy. Caught up on all but now to tired to respond. I'll bbl
Hugs all aroundc
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Dana, have you reported your swollen ankles to your onc? I just did a quick search of SEs, and it seems like that's one that's considered worth reporting.
http://www.rxlist.com/taxotere-side-effects-drug-c...
I had Taxotere in 2008, but don't recall ever having swollen ankles, so I think your onc needs to know.
Hi, Patty! We were posting at the same time! Glad to know you're here!
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Yes, I emailed her and let her know. I'm sure she will get back to me. I will let you know. Thanks so much for the link.
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I have my pet scan results. The tumor in my right breast is gone, the tumor in my left breast has shrunk. All bone lesions are stable. My tm's CA27 came back at 34!!!! Merry Christmas!!
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Txmom: I'm also currently on Taxotere and while I haven't had any swelling, my MO and NP check my ankles at every visit. I think it is not an unusual treatment result. There is actually an old thread on here just about that. Good luck.
My tumor markers are low enough that my MO is discontinuing Taxotere after 6 treatments. The markers show what the scans show: there is very little cancer activity in my body. I was a little surprised but of course relieved to have a strong response. I will continue with herceptin and Perjeta and start tamoxifen tomorrow. I fully realize that the bottom could fall out at any time, but I will certainly be grateful for taxotere-free holidays with my kiddos and cute husband.
Thinking of all of you.
Rachel
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Chelle - WOOHOO! Best Xmas present! That calls for celebration.
Oh Hawaii sounds divine....
Patty - waiving here.
Has anybody heard from Dune?
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Chelle: celebrating with you! Such great news.
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Chelle and Rachel, Great news! Yes, relax and enjoy your families now
Hi Patty, How are you holding up?
Bosco, congrats on your son's acceptance and on your upcoming trip. How exciting. Be sure to send us pictures.
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Chelle, wonderful news for you!!!
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Wonderful news! Sending all of you super hero women huge hugs!
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Please talk me down. Pet scan tomorrow because it's been 3 months and because my red blood count was down to 6.6 and I needed a transfusion. I had radiation in August. A rod placed in my femur in Sept. And don't eat a lot of the meat. Couldn't my rbc be low because if those things? I'm afraid he's looking for bone marrow mets or other progression. Please can someone help??
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Chelle,
I am beyond thrilled to hear such great news! I'm celebrating with you. Congratulations my dear -
Amy
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Fabulous news, Chelle! So happy for you!!!
Rachel, if your hemoglobin is at 6.6 after being transfused, perhaps it's a good idea to have the PET scan to find out if anything new is going on, even though, as you pointed out, all of the things you've been through could be the reason for the low counts. I'm not sure why you're so focused on bone marrow mets. I think many women with bone mets have some mets in their bone marrow. But surely if you have any progression going on, you'd want to know that because it means the med you're currently on has stopped working, and it's best to know IF that's the situation, which we'll all hope and pray it's not. Of course scans are always stressful, but worrying isn't going to change what is or isn't there -- it just makes you miserable and upset. Take some deep breaths (seriously)... go outdoors and take a walk if you can to clear your head... put on some good music... try to distract yourself from negative thinking. Perhaps all you need is an additional transfusion. Maybe they didn't give you enough blood. I needed 2 after my surgery. But all this worrying can actually lower your resistance and make you sick.
What time is your scan tomorrow, so that we can all be with you in spirit? (((Hugs))) and hang in there! You can do this! Deanna
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Following up to say I've been given an appointment date at the hospital for both a mammogram and an ultrasound...it's next Tuesday, Dec. 22, at 1:40 pm. That was fast.
xox,
Valerie
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Love it Chelle and I have to add yeah for pot!
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Hello Everyone!
Chelle & BF76, fantastic news for both of you!! Txmom, I haven't heard of cankles in years, you made me LOL even though it serious about being bald & bloaty.
Rachel, second what Deanna says. Easier said than done, but you need to know & the onc needs to see another scan. Let us know when & we will be there in spirit with you.
About the study researcher being "uninvited" to conferences, I didn't think to ask her what kind of conferences they were, I think I was just so stunned that anyone would do this. I know that she does presentations to all different kinds of groups, professional, Gov'ts & probably private like Komen. We have one more interview to do & I'm going to try to remember to ask her.
LindaE, she says she is presenting at a MBC conference next year in Montreal if she has completed the study, I will try to find out some more information. I agree everyone, MBC needs more publicity which is why I said I would be a part of the study. It's not anonymous, my name will be attached to the study & sound bites with my name will be used in presentations which is a bit scary.
Hope everyone is doing what they can for the holiday season & no more! I'm finding that I did just a bit of baking, put up a tiny tree with a few other decorations, did 1 hour of Christmas shopping & I was done in, so that's it for me. We've been invited for Christmas dinner which I have to make a steamed pudding with sauce, but I've made it so often that I can almost make that in my sleep. Take care everyone, cheers, Dee
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Rachel,
Agree with Deanna deep breathe, walk, try some meditation. Deepak Chopra has a free series available right now with 20 minute meditations. Just google Deepak Chopra and it will come up.
I understand your worries about bone marrow mets. I was recently diagnosed with bone marrow mets however, I have pancytopenia which means all of my blood count was extremely low for 3 months not just my hemoglobin. Where are your bone mets? There are so many causes for low hemoglobin.
Your PET is just a starting place for diagnosis. I look at my scans as monitoring my current treatment although I still get scanxiety. I will be thinking about you tomorrow on scan day. Be sure to ask if you can have your results before you leave or ask your ONC to call with the results as soon as known. Let your ONC know how anxious you are.
We are all here for you.
Beth
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Valerie good for you. Valerie make sure you get the results the same day, there is not reason that Onco won't have immediately results, it could even be verbal only, (she could call in and request it), with Christmas coming so close, everyone is kinda not here and I would not want you to get lost in the shuffle.
Rachel the same for you regarding the PET, make sure to bother Onco after you take the PET, call and say to just had it done, and they will be able to call in and get a verbal from Radiologist. I know we were able to do it many times this way. No need to torture ourselves waiting for the written report, maybe they won't have all details, but they could see if there is progression.
Chelle and Bluefrog this is good stuff. I do wonder, why even bother with Tamoxifen etc..., my daughter at such a tender age after METS showed up , was advised by Onco and breast surgeon and then Gyno Onco to have oophorectomy, at first I was devastated, but I trust the surgeon and I spoke to different doctors and being she was ER+PR+ and then with new biopsy HER2+ it was decided that less risk of any hormone driven issues would be welcome. She had it done laparoscopically, and was on her feet within days. Yes it's very sad to see a young girl go through Menopause, but... The reason I post this, is maybe this is an option for others, if you did have a mastectomy then would it not make sense also the oophorectomy at this stage? It turns out that she did not have a mastectomy, because surgeon felt he got it all at the beginning and then when she got the Mets he did not feel that it warranted. Go figure.
I have a question, so having PET every 3 months, and now it will be even sooner, with so much activity on the bones, we kinda let go of mamos. Does anyone know if a PET would show anomaly on the breast also, or should she schedule a mamo anyway, I know if we were to ask Rad from mamo she would say yes, Onco I am not sure is so hot about it, so it kinda of leaves us to wonder...
TM's came down like 2 points or 1 point in another, I did not spk to the office only got the BT results, I wanna go through the whole thing to understand it better, the other numbers are off , WBC is just about not there,(yes she takes Neupogen) RDW is off, and many others, so I need to go through it slowly, and will only spk to them next week. But I think I know what he will say, first if it went down even minimally it's good, and the rest he will say it's because of the intense tx. So.... Sorry I can't be too excited, definitely better than the TM's going up, but I am treading lightly...
Bosco congrats on your son's achievement. Beautiful moments.
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thank you to all of my special friends! You are all very important to me! It has been essential to have you to share the ups and downs with. I know that this disease is constantly going through highs and lows. I will grasp on to this news and live for each blessed day.
I have been taking a four part CBD one part THC oil as a complimentary tx. I can't help but feel as if it really does kill cancer cells. I urge any of you who can get it, to give it a 90 day try. I am sure that Wendy and I are on to something! Love and hugs to all!!
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Anyone has Gamma Knife on skull mets? Wednesday I am scheduled for Gamma Knife to remove 11 brain tumors and one inflamed skull metastases. I have several others but the skull mets above my eye throbs and I'm concerned it will spread to my right eye. Since it is bothering me the rad oncologist said he would take care of it when he goes for my brain.
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Thank you for the advice on the counseling search Deanna! I'll start with the local cancer center folks to get recommendations. At this point I'm leaning toward working through this with other Stage IV folks and learning from you all rather than trusting someone who isn't "there" to explain how to manage. Plus, based on what I read here, the random tears are a normal part of the process regardless of whether crying is a normal MO.
Hindsfeet - Will be thinking of you as you go through the brain treatment. Hoping these treatments can help relieve your pain!
Great news about the test results Chelle! After I saw your tree photo I added another strand of lights to mine...still not quite there :-)
Warmest wishes to all as you visit with your friends and family this month! Every moment is so special at this time...
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Good news! Active areas seen on the bone scan last week were not evident as metabolically active on the PET scan, the activity on the bone scan is supportive of healing lesions so even if the "new spot" on my rib is a met that was too small to show up on my last PET, it is responding to treatment and healing. Given that we are seeing good response, we decided not to change the chemo protocol. It's working, we'll use it until either, I cannot tolerate it anymore or it stops working. When that happens we have many options and will visit them at that time. I couldn't be more pleased with today's report. I went from fearing progression to seeing a glimmer of actual remission in my future and I am still on my second line of defense. Merry Christmas to me! A little lesson that a single scan does not definitvely conclude progression, use all the tools.
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Tracy that is indeed great and welcome news! It's always good to have the comparison of the scans to help with tx and for your peace of mind. Now you can enjoy your holidays with some relief and calm.
Last day of rads for me. Scan. Treat. Repeat. That works for me!
Wishing everyone a weekend with less anxiety, less pain, and more joy.
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hindsfeet,
No experience with gamma knife but just glad to "see" you here. Wishing you the best and happy holidays
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Hi Ladies,
Thank you for all of your kind support. Yesterday was a good day - drove home to spend the night with my mom and took her to her treatments and then to her genetics counseling appointment. Today is her last Rads appointment and I must say, she is moving around a lot better and in less pain than before all of the treatment. She says that side effects are minimal and that it doesn't feel that she has anything wrong with her with the exception of daily treatment appointments. Glad to see she is in better spirits although she told me she has not asked for any details of her tumors, aggressiveness, etc. from her doctor. She would rather not be aware of what it all means - just how they will treat it. She goes for another PET scan in a couple of months. It was so nice for her to be like my mom again and able to go shopping with me as if nothing was wrong. She is also able to talk about it a little bit better without crying.
The genetics appointment was eye opening especially since the stats for my odds of breast cancer are very high. My mom and the doctor suggested that getting a mastectomy isn't as easy as I seem to be making it out to be - that it is a major surgery. They even recommended waiting until after kids although given my plan - I want kids at 34-35 and would rather have this surgery way before then while I am healthy, then ovaries afterwards.
Exbrngrl , 50sgrl, dlb823, and momall, shout out and thank you for your support. The encouragement helps me to not to worry. I'm hoping I can get het to join this site and thread soon.
To everyone else, so sorry I cannot address you all individually but hope everyone's scans and treatments before the holidays go well and that you are all pain free as you spend time with family (and going forward). To those in unfortunate circumstances due to a recent dx or scan result, I am thinking of you all.
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I've been thinking about Carla (Freebird) a lot in the past week or so, especially since someone else here had commented on her absence. So yesterday I starting prowling around the internet, and came across what looks like devastating news. The Legacy site has been down yesterday and today, so I can't access it to see if there's any additional information. But from her FB page, she is Carla Cooper from Boise. Here are the links that have me thinking the worst, although I wish she'd reappear and tell us this is all a terrible coincidence...
https://www.facebook.com/carla.cooper.581?fref=nf
http://www.tributes.com/show/103091812
I'm so sad. I thought about not sharing this, but I also feel the need to honor her.
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