Bone Mets Thread
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Valerie, a bar of soap placed somewhere near your feet -- like under the bottom sheet or between the bottom and top sheet -- gives many people relief from leg cramps, although no one has yet to come up with a scientific reason for it. Here are a couple of articles I just pulled up for you. If you suffer from night leg cramps, which many of us taking Ibrance do, it's probably worth a try to see if it helps you. It works for me even with a hotel-size bar, which is what I use.
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That is so crazy about the soap helping leg cramps. I had never heard of that until postings here. Interesting.
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Sue- I have to quickly respond !!! I bet I could get Caryn to go for a ride with me... just to keep me company though and maybe lunch..
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Well I would, but I'm watching my granddaughter right now 😊
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As a nurse, I have heard many people swear by the soap in the bed. I just bought some magnesium pills to see if it will help the cramping/ soreness in my upper legs.
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Kathryn potato chips it is...LOVE IT!! that was so good. Unfortunately, Dani is so young, and she prefers "potato chips" too, to be honest, of course she does work on herself bcs hubby is such a grand guy, but...she is already menopausal over 2 yrs, she even got white hair (when she has it) that has to be dyed. i am not menopausal yet, so...it hurts to see her go through it.
Jennifer it's def an emotional thing. But maybe she does not wanna put you through such surgery with you having to deal with chemo, etc... Def would be nice for you to hear from another surgeon also. Dani, did go to at least 2 surgeons, when she was first dx, she had a lumpectomy, they did not think she should have a mastectomy, and when she got Mets, they for sure did not advise, but did advise to do an oophorectmy. So it's complicated, and different ppl make different decisions. It's tough.
Amy aww the pictures, so dreamy, nice!
Mary wish you the best for the Pet/CT, it's good that they are checking it all out. So sorry, that you can't catch a break. Mom will be with you always. My mom was in her 90's, sharp as a nail, I miss her every day. And I dream of her a lot.
Suersis yeah their "dialect" is enough to make you dizzy.
Dee thank you, but the problem is that they saw "new" ones, that I really don't like.
Deanna/LovesM- Thanks so much for always wise advice. I posted on the Ibr thread, so I don't want to bore you. I did call MDA they told me she can only go there if she were off all treatments. That's weird no? And if we do go someplace we coul also go to DF. So the question is should we give it a longer try with the Ibr/Letr and then he will add something? My hesitation is a) It's being used off label(which means even less proven than for ppl that it's actually written for), and b) what to mix with it? Herc/Perj? or Faslodex? The Xofigo (as I wrote in the Ibr thread) has radium, hmm scary, with her being next to the kids? He himself is in doubt. He mentioned this one, bcs I told him why revisit Her/Perj when we know it did not work. But do you revisit, if it's mixed w other things now? Do we give this a try for a few mos still then go for other opinions? I hate to separate her from the kids, if she has to travel. She won't like that either.
Also, I would like to ask everyone if you have any experience with Univ of PA? I know someone..., so they said they could get us in for a consult?
I tried to start a thread for Triple Positive taking Ibrance, no bites. I would like to see what other ppl with triple positive do when the targeted therapies are not working.There is a Triple Positive thread, but they are not stage IV, and I hate to freak out the other side (you know!).
Thanks for all your support, it brings me to tears such a nice bunch of gals.
P.S. Bestbird sent me once her bible, does anyone have the link for it by any chance? If not I'll just look harder. You know Deanna, your looks and your type, you two could be twins.
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Mom- If you can get to Dana Farber I can supply you with the exact person you need to contact that is in charge of all BC second opinions and you bypass all the loop holes in getting a fast appt. I would have Dani there in a heart beat if it is possible. She would not have to be off of treatment to go there. They also will work with your MO as well. I would be willing to help you in any way I could if you think it is an option. I am not sure where you live if you would drive or fly? Hugs! Edited to say: There was a chance that I was triple neg too when this all came back. She told me about a treatment that was easy and had great results but did not discuss with me until we knew for sure that the Ibrance femara was not working. I am not her 2 new pos. but there was question on er/pr bone biopsy. Pathologist at Dana opinion was the most important. Good luck with figuring this out on second opinion.
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Thank you, Deanna, for the soap explanation and links. Yes, last year I was tortured with seizing muscle cramps in my thighs, legs, and even ankles. I couldn't walk, sit, or stand. My DF had to practically carry me and was massaging my legs all the time to try and give me relief. It went on for about three months, and then gradually eased up and away. At the time, I hadn't even started treatment yet--I was in very major denial. Can you believe I attributed the pain to my fiance's bed (we had just bought and moved into our new home, and brought furniture from both of our households.) When I was physically able to, I went out bed-hunting, bought a king size bed and the top of the line hand made mattress at our local shop, crafted especially for not pressing against pressure points. Once I began taking Arimidex, I haven't been suffering from these brutal leg cramps but every so often one shoots up my ankle and leg, out of the blue, always at night. I do what you do--jump up and press my foot flat on the floor, to "iron" it away. Sometimes it works, just the other night it didn't, and I was walking in circles like a madwoman until it eased up. My DF brought home a package of lavender scented soap for me today, but I noticed it was anti-bacterial soap. My question is, is that okay? Does the process work with antibacterial soap?
xo,
Valerie
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Momall - Here's the link
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momallthetime, I just recently switched treatments from Abraxane. I will be starting Ibrance with Faslodex this week. I am not triple positive just ER/PR but I do know that Ibr/Faslo has just been approved by FDA as protocol for post-menopausal Stage IV. Just FYI in case you didn't know.
Aurora
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Hi all
I don't post much but I read this thread daily. So glad to see people getting good results and trucking along with life's adventurs.
I just wanted to let momallthetime know that I start at 1 hospital in MA and the onc told me 1-2 years at most. Horrified I left and went to Dana Farber the onc that I see there is an amazing woman who said to me if I'm wiing to do this we will try everything and anything to keep me here for my kids. She also said with all the new drugs and over 40 clinical trials at DF for breast cancer she was certain I would be well over the 1-2 years the previous Onc quoted me.
I find DF to be so comforting and attentive to me needs and wants. Highly recommend checking it out, a second opinion can't hurt.
So if your interested you may want to take lovemaltes up on her offer.
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Bosco how are you doing? How are the little ones? I think you have pretty much the same age children as my daughter, like 8 and 6/7? thx so much, yeah, we could officially take the trip, we are in NY, leaving the kids is the hard part for sure. But it's good to know. Are you seeing the same person that LovesM knows of?
LovesM it's so special of you to put yourself out like this. Yes, it's definitely an option. Let me see what he says tomorrow again. Do you think they do skype? If we have all the stuff in the cloud? My sil is very good with these things and he enters all info in the computer, so we would be able to send it over, and then skype? What do you think? She could charge Dani's insurance as a visit. I wonder.
Aurora so happy for you, I also heard that this combo is great. Thanks so much, will def put it out there, the only thing is she is Her2+ so...the question still remains if to stay with Ibrance. But I do think it helped, bcs nothing else was making it budge.
You know that is what is so difficult to understand, 3 of grear Her2+ therapies did not help at all, but now she was on something for Her2- and it helped?? How is that?
Moissy hehe you are my right hand, lovely, let me see if I could get any info there. I have communicated with Bestbird in another site Inspire, but I was not there in awhile. Thx a lot.
Valerie, so glad you are doing better. Soap it is, they say it really helps.
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Bosco- I had no idea you go to DF. After having bc 18 years ago Before it's ugly head showed up I didn't even think about it much. Going through what I did with recurrence locally where I live, was a total nightmare. I finally gave in to my daughters who literally did all the ground work for me to get to DF. I saw Dr Partridge for second opinion but now I'm seeing someone else that came on there in Oct. I love her to the moon and back. I feel so safe and attached to Dana. I hope you continue on a path to healing. Just to give a reason why I love them so much, one of my visits I was scared. I started to cry and my doctor would not let me leave until she could do something for me to help me with my feelings . She didn't care about how many other appointments were waiting for her she asked what she could do to help me feel better. I will never forget that. I got good news that my bone Mets have begun to heal and she hugged me . I was very sick and she was away on vacation in someone else was covering for her when she returned she called me by then I was much better. No one where I live does that.
Mom- I'm in upstate NY. Boston pretty much is 3 hours from the city. It takes 3.25 hours and I'm an hour west of Albany . If you want to in box me I will give you all the information you need. No they won't do Skype. What they will do is get every single report you have from Dani's history You sign a release form and they do all the work. You don't have to do anything but show up. Maybe Dani and DH could make a little weekend out of it. I would be willing to even meet you there to take away from being overwhelmed. Actually They have valet parking it takes you right directly to the elevator to the ninth floor where you go to the breast Center. Good luck with a decision.
Edited to say: they really rely on the pathologist slides. You would be surprise how their patholgist interprets compared to what I had interpreted here. Their interpretation gave me a complete different protocol.
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MomATT: I'm treated at UPENN. I couldn't be happier with both my clinical results and how I'm treated emotionally at every turn. I see Dr. Angela DeMichele and she also leads their research division
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Rachel, How was the conference? Did you learn anything interesting about new directions in research and/or treatments? Did you and Susan (Scrunchthecat) ever find each other? Werethere any presenters who impressed you?
Amy, Beautiful photos. I had never thought about a train trip, but now I will consider it.
Lynne
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Momallthetime, kiddies are good, we are heading to Florida Wednesday for spring break! We all need the vk. Plus it gives me a week off taxol which I desperately need. Just about the same age as Dani's, 9, 8 and 1. So I get how hard it must be for her to even think about getting treatment 3 hrs away! Boston has a lot of fun things to do with the kids so maybe they could make a weekend of it at least for the initial consult.
I see dr. Nancy Lin and her np Christine. amazing ladies, they really go above and beyond .
What ever you and dani decide I wish you nothing but healing happy thoughts and prayers.
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Mom- Dani would not need to do treatment at Dana. They would advise protocol and follow ups.
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First I am so touched for the support you guys give, I always see this in the day to day, but when it's for yourself, boy, it really hits home. Beyond, Beyond Thanks!!
Rachel, right, i overlooked it, that's so great I wrote it down. How are you doing? Love the picture of you and Cristina. What a small world.
Carol, thx for your connections. But with all of the 2nd opinions we do have to be there right, the don't look at just paperwork and CD's? Hmm. gotta think how to work it out.
Today, we had another surprise NP sent me an email, that doc decided that Dani should stay on the Ibrance/Letrozole ONLY!! What?? Yeah, we will have a convo tomorrow morning, I convinced Dani to be on the phone on a conference, we gotta get this thing straightened out. What really is making my head spin, is the fact that if the PET is correct, then the Ibrance which is guided to HER2- ppl is working on Her2+. And all the good stuff for HER2+ was not working on Dani. That is really strange. Unless nothing is what it is. The biopsy was double checked by a different source in Sloan, and then another biopsy this year confirmed status, so that's insane.There is progression also. I am learning that it's not that uncommon, but it's still messing with our heads.
I am thinking of Dr Robert Nagourney also, he has a different take on the cells, something like they don't proliferate really it's more that those that stay are because the don't die. He takes a sample of the tumor and tries all options to see what really works for that person. Did anyone here of him, he is in CA. Maybe it's worth a phone call.
And also, I know I read someplace here, about how difficult is to get to the lesions in the head, and only certain, very few meds would go through the brain barrier, anyone here knows? There are way too many lesions on her skull, and maybe I could ask him to be more specific in targeting that!
Bosco yeah very similar in age, thx so much for the recommendation. You guys are just so truly special. I have a goldmine here. She would definitely do the trip to any or either of these places if we really feel we should, Dani's sibs would help with the kids, she just doesn't like to be away from them. If we could make it just a one night trip, it's a possibility. Going away should be so much fun, take tonz of pictures, then the kids could get a small (yep old fashioned) album and put their pictures there, priceless!! And no Taxol, you kidding? Awesome.
Chelle, Wendy, Patty, Terre, Annie how are you all coming along?
Lynne how is your husband feeling now? Are you inching along? '
Everyone, I know I did not roll call all my friends, hope you are ok.
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I just wanted to share this with everyone. I got this from my breast surgeon last week when I stopped by her office for a copy of my pathology report. She has ordered re-testing of my original tumor to see if my Her2 status is different. The bone biopsy was inconclusive for FISH testing. I meet the RO for my femur Wednesday morning. Sending good thoughts to everyone in bone mets land tonight.
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Mom- In my situation Dana does not use pet scans. I asked why? She told me cat scan and bone scan is where they can get the most accurate information. I'm not sure if they use a pet scan re: Bosco but I know Deanna has shared with me that they do not use pet scans at UCLA either. We both have bone mets. I do know that pet scans can give false/positives and I think that Breast Cancer Treatment Centers Institutes by pass them. I'm not sure what they see regarding brain mets. Are they skull mets? Or in tissue inside of the brain? So confusing but wanted to share that information. Maybe Bosco could shed some light on pet scans for her.
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My wife is getting treated for bone mets at Stanford and there they don't do pet scans as well in her case. Only CT + bone scan.
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Deb love the seeds of happiness very cool idea. Funny how something so simple can be so profound.
Lovemaltes after having all kinds of scan they did a pet scan on me in February came back all lite up freaked us all out. I have to tel, myself I'm 52 some of this has to be arthritis who knows.
So plugging along with my trial get my second dosing of Faslodex on Friday. So far the worse side effect is weight gain which isn't so bad for me was getting pretty skinny , but it can stop now lol. A little bit of finger pain which is weird. Other than that I'm hanging in there. Just joined a dragon boat rowing team I needed something outdoors since my whole horse life has been taken away. So now I row as long as I can still do it. The boat is full of survivor breast cancer ladies so it's a constant reminder of what I will never be which is hard. However they are wonderful like all of you ladies. It blows me away the power of a group of woman who are kind to each other can have. This is not something I have experienced in the past I'm just sad it took cancer to get me here.
My sister got her results yesterday from her biopsy. She has cancer as well I am heart broken. At least I can leave this planet knowing that my disease saved my little sisters life. She said she would never have gotten checked out if it wasn't for me. Always an up side.
Wendy
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Wendy, I hope it is all false too! What did the other scans look like? Or was it just a pet? Sorry I am not following as closely as I should be here.
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They checked it against a bone scan and ct scan afterwards, I believe the preferred scan is CT now that I've had so many. It showed a little less but still a lot. Just bones so far though and I'm thankful for that
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Great news Wendy!! Thanks for clarifying that for me!!
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Wendy, I am so sorry that your sister also has bc. I am glad they she had it checked out. It is unfortunate that your disease is what prompted her to go, but, as you said, your disease probably saved her life. Let us know how she is doing once she starts treatment. Your sister is a member of our extended virtual family, and it will be nice to know that she is doing well. It sounds like you are doing well on the trial so far. YAY! I hope you continue to have minimal SEs. How often does your rowing team meet? Will you compete at all?
Lindalou, Did you receive the results of your thyroid scan? Did you DH receive results for his prostate tests? I hope everything is good.
Caryn, It is getting very close to Miles's due date. I do hope you wil post pictures once he arrives.
Mom, DH is doing very well. Thank you for asking. He has gained back 2 of the 50 pounds he lost. He is gaining strength daily. One of his legs has some weakness, so next week we will ask PCP if PT should be considered. He has an appointment at Dana Farber on Thursday. I am hoping they recommend regularly scheduled scans to monitor for recurrence. I have done research, and there are clinical trials and medications for kidney cancer, but so far, nothing seems to make any difference in recurrence. People who take the medication are just as likely to have recurrence as those who do not take it, and there is no difference it time before recurrence. Since all the drugs have nasty side effects, I think DH will probably choose not to go that route if there is currently no trace of cancer now. Of course if he ever does have recurrence, he will have treatment. God willing, that won't happen. One of us with stage IV is one too many. I hope you get thing straightened out for Dani. My BS believes that tumors are not homogeneous and that different parts of tumors can have different characteristics. Maybe that is true. If it is, I can understand why there isn't full response to treatments. I hate cancer. I am sorry so many of us suffer with it. There are more questions than answers.
Terre, How are you? We haven't heard from you for a while.
Patty, I hope you are back home soon. I wish they would get to the bottom of things. You remain in my prayers.
Chelle, Are you doing okay?
Dee, Are you home from your trip?
It's raining here today. I cope better when there is sunshine. I am still waiting for warm weather so I can really dig into my garden. Of course, I really can't plant any veggies or new plants until Memorial Day because of possibility of frost.
Lynne
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Lynne you are doing excellent work. Best to you.
Wendy good for you.That's so sad about your sister. What's her protocol for what she has. Does she know already where, what she will be doing. Dani's sisters have to be checked because the thinking is that the age that a young sibling got IT, the others should be checked at that age. Anyway, it's good that they did, bcs they found some suspicions which of course it's INSANE. LovesM I am in touch with another Rad Onco that will be checking out Dani's CD for another opinion. I will ask what he thinks of these scans differences.I was told Pet/CT is the gold. Let you guys know what he says.
Thank you all for being there.
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Hi all!
Got back last night, what a fabulous holiday! We didn't go anywhere exciting but visited with friends & had a relaxing time in the Okanagan. We visited with Susan's DH (my dear friend died of colon cancer in Nov, age 58, she was my rock) We laughed, we cried, we went through a lot of her things helping him sort stuff. Back home now, in my own bed, yay!
I'm a bit behind, but wanted to say to Wendy, sorry about your sis, but glad that she got checked because of you.
Lynne, happy to read that your DH is getting stronger, fingers crossed for continuing to do so.
Lindalou, I hope you get the phone call today about your thyroid.
I will have to go back & read the pages I've missed, it looks like I've missed something about Dani, Patty, Annie and others.
So much to catch up on today.... take care everyone. cheers, dee
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Lynne,
Glad to hear that dh is doing well and thank you for remembering that Miles will be born very soon. We are all waiting with great happiness. I will be present at the birth so it's doubly exciting for me.
Regards to all and best wishes.
Caryn
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Wendy, I'm sorry to hear about your sister. It reminds me of how I went in to get my cyst checked out after my brother was diagnosed, only to find out I had breast cancer hiding too. Whenever I hear someone who says they've skipped their mammograms or ultrasounds, I try to convince them to go in. Delaying doesn't change what's already there. Wishing you the best on the Faslodex.
My brother is feeling better, he has a bit more energy and has been able to get out of the house more, which is always a blessing. He has his 3rd Doxil infusion today. Yesterday at the oncologist's office, the doctor said his breast mass looks and feels smaller to her, and that it is a good sign. His tumor markers went up a very small amount but she is not concerned about it. He has a PET scan scheduled at the end of the month. Is PET preferred to bone scan? I guess she can't do a bone scan right now because there won't be a recent one to compare it to. His Alk Phos has gone up a lot, around 280 now, but his blood calcium levels are slightly low, 8.3. We don't really know anything until the PET scan.
Hugs to everyone here.
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