Bone Mets Thread
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Hi allI just caught up on 6 pages. Wow nice to see some good news including stable findings.
Momallthetime Thinking of you and dani. Patty I hope they let you go home soon.
I have been away as the end of skull rads exhausted me. I have signed consent to treat for EMBRCA trial. Multiple scans this week will determin if I can start meds next week. 2/3 of pts get parp inhibitors and 1/3 get physicans choice likely xeloda for me. My fingers are crossed for parp inhibitor.
Thinking of you all and wishing US residents a happy thanksgiving.
Peace
Mary
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Patty - bummer but I'm so happy they finally found what was wrong. Uphill from hereon!
Mary - good to see you back here. Fingers and toes crossed you get the parp inhibitor.
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hi Patty
I have stage iv mets to every bone in my body except my legs. I have been taking marijuana oil for nausea and vomiting. It works better than any anti-nausea out there. I put my oil in capsules. You can probably buy it already in syringes. You only need a rice size dose to feel the effects. You have to build up an immunity of course. This oil wil help you eat, make sure you take it before you eat I take mine every 3-4 hours just to make sure the nausea doesn't come back. It helps you sleep too. If it wasn't for the oil, I wouldn't be able to eat. My onco gave me Xeloda to try but she gave me 3000 mg a day which almost killed me. My blood work was way off. I tried toget a lower dose but my onco wouldn't have it. I hope all goes well for everyone. If you have any other questions I will be more than happy to help.
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thanks.
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So sorry Patti about the C-diff but glad they know what to treat you for. Here's hoping you feel so much better in the coming days.
Amy, sorry to hear of your progression. You are in my prayers.
Mom, thinking of you and Dani every day. Babs, what an amazing reason to go to Paris - it's so romantic even for the city of romance. Thinking of everyone and appreciate the sharing and knowledge that takes place here
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FINALLY took them long enough to figure out what you have geez now you will get stronger and stronger thank god somebody had their thinking cap on eh? I don't blame you for wanting to get out of there home is always better and you will be there soon.
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Amy, I am sorry to hear about your progression. I know how you feel. When my liver mets were diagnosed, I felt like I had taken a huge step away from what had I had come to think of as the safety zone of bone-only mets into what I thought was "that dangerous world of liver mets" where my QOL would be quickly go downhill, and my life would be immediately changed forever. It has been almost 4 months since that dx and 3 months since I began my new treatment plan. Guess what! I still feel exactly the same including QOL. Nothing has changed except the treatments, blood tests, and SEs. I am still very healthy and involved in life. So far I have no symptoms from the liver mets, so I have chosen to ignore them. I realize that sounds silly, but it works for me. I have done some research and read many, many posts on the boards. I was surprised to read that many people have had their liver mets come under control, shrink, and even disappear with treatment. My MO has been positive about expectations for response. What I am trying to say is, don't lose hope or be discouraged. I know that none of us want to progress beyond bone mets, and it is frightening to hear that we have. It's an ugly bump in the road. We will all continue to be here to support you. I cannot give you much feedback on your treatment options. I had researched Xeloda because I thought it would be one option for my treatment. The results seem to be pretty good against liver mets. Hand/foot syndrome seems to be the most common SE, but there are some suggested products to help heal or prevent HFS. I will keep you in my thoughts and prayers. In the meantime, enjoy your daughter's wedding.
Patty, in the hospital with c-diff. UGH! I hope you are home and feeling better soon. Your description of the gowns, etc brought me back to when my DH was in the hospital last year. During his second bout with sepsis, they discovered that he had 3 types of multi-antibiotic resistant bacteria. Something usually picked up in the hospital, of course. One morning when 6 residents and a nurse came into his private isolation room at 6:30 for rounds, all decked out in their yellow gowns, gloves, and masks, my DH looked at them and said, "Wouldn't it be quicker and less expensive if I wore the gown and gloves and you guys just dressed normally?" They all had a good laugh, and I knew my DH was finally beginning to feel better. Sending hugs to you.
Babs, Forget everything else and enjoy your dream trip to Paris. I can't wait to hear all about it.
Mary, it is so good to hear from you. I hope you recover from the rads exhaustion soon. You have been through a lot, so try to take it easy for a while. Give yourself time to recover. I hope you get the parb inhibitor, but more than that, I hope whatever treatment you are given is gentle on your body and strong and effective against those cancer cells.
Dee, I am happy to hear that you are doing well. I hope your next scans show stability or even better.
Lindalou, I can't believe that it is almost time for your dh's PSA test already. Where has the time gone? No doubt you are more nervous about it than he is, right?
My TMs (27.29) are down 76 points since I started on Faslodex and Ibrance. They are now 212. I would love to get down to double digits. I started cycle 3 of Ibrance last week. My SEs have been minimal other than the low blood counts. I will have a CT scan on 12/6, and I must admit that I am nervous about it even though I expect good results.
Hugs to everyone, Lynne
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Lynne. Keep the faith and only think good thoughts about your scans !
Amy, like Lynne I wouldnt know that I have liver mets other than they're on my scans. It has not effected my QOL at all. Thank god!!! if the bc stays in just my bones liver and inframammary glands I can deal at this point!
Babs
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Deanna if somehow, you could get the info by tomorrow morning It would be terrific. They gonna hate me, but I'll call them again in the morning, and try to get the info thru. They pretty much work only on email, which is really annoying, and they did not respond to our email from Friday. So what to do?TIA!!
Deanna you are right about MO. But, to be honest, this is how I see it. We are at a large Center, in NY, once in treatment, it's hard and complicated to just go for another opinion. Even now, with going to doc 3 weeks in a month, then as in this week, week off, scans, waiting for results, it's exhausting. And having to run to another doctor it is hard. But having said all that, I am cynical, and I really don't know what the deal is, if she is having a Pet/Ct why would they not just do a full body Pet/Ct and have her come for the bone scan just for the extremities. It defies my logic. That's what bothers me. She's always had full body Pet/CT. Once she had a bone scan, just to be followed by a Pet/Ct. I suspect it's something to do with Insurance, secretary kinda said something, and I am thinking, they don't wanna bother with it. Turns out she does not need auth.for Images.
Babs I cannot imagine how anxious you must be feeling. Would tomorrow morning even be a possibility still? Hey, you've got Paris. How long will you be away for? Hope you enjoy every minute.
Lindalou thanks so much for your input. He does have prostate mets, was diagnosed in PET/CT. They did a biopsy from that met, and they said they took it out. BUT, once he has mets, I feel it's a bigger concern that in these 3 mos,something could have shown up that was hiding at the time of biopsy. And, yes, it could always happen, but once it did Metastasize, I think for sure they should be more aware. He has good insurance, so at least in the beginning, no??
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Patty so crazy you gotta deal with that now. Probiotics sounds like a great idea, good they got on it as soon as you found out. It's not easy. How are the kids?
Amy no words, I could just imagine how you feel. It was hard while it was bones only, seeing the progression, but when they told us was in the liver. And when it proliferated so fast, I must say, that was really hard. But, day to day not much changed. Dani is taking Xeloda, would they consider doing a biopsy to see if any of the status changed? If it's small and localized pretty much, maybe they could do ablation? When will you know the next step?
Jensgothis thank you. I know. How are you coping?
Mary, wow that's tough. Dani also just finished Rads. She is not even done with it. They gave her a break she did not want due to so many sores caused by Rads to the area. I could not even find any info on the trial you mentioned. What is it? Where is it being given? When will you know?
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Amy,
I had the same thought...as long as the C was only in my bones, I'm good.
I progressed to liver mets July 2015, and nothing changed re QOL, like Babs said.
It progressed to my left upper lobe this past July, plus several lymph glands in my chest. I have fairly intense shortness of breath (SOB) and have started using O2 more frequently. Got a 3# portable oxygen concentrator for when I need more full time use, when I'm out and about. As I mentioned previously, I've stopped treatment, and am enjoying the company of friends on a regular basis.
This past weekend, a dear friend from Monterey came up and spent 24 hours with me and we went to the movies, went home and ordered pizza in, watched a couple on movies from OnDemand, slept, out to breakfast today and to church with me and then drove back home. I took a nap.
Life.....
Love to you all, and Patty, get well soon!
Patt
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Here's a pic of my boy kitty with his irresistible tummy open to a rub
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Oh my Dear Dear friends...thank you for the hope you've given me and my family. Thankfully I can put one foot in front of the other again hearing your words of encouragement. Friday I was numb and planning my funeral but now I have hope and optomism.
As I mentioned on Friday, my DD2 (my youngest and the one we both call our BFF) had her bachelorette weekend at a gorgeous old resort in northern Minnesota. They just received 12+ inches of snow so it was beautiful. I was invited and I'm so happy I went. We celebrated my sweet sensitive daughter but mostly made memories.
I am trying to point out to my family that we have been given a gift and that gift is the opportunity to make precious memories and to have a very long good-bye. I know that has given me comfort and I hope it helps my children as well.
I'm relieved to hear so many of you don't even notice SE's from liver mets. Having stopped Ibrance mid-September I've felt so healthy and vibrant, I really thought I might be cancer-free.
The wedding is a little over two weeks away and there's a few matters to finalize so I'llget back to business, pray for an answer to my treatment choices and I'll focus on the happy things and the many blessings I have which includes each of you here at BCO.
Thank you allso very much.
Amy
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Amy you inspire me. It is beautiful how you are focused on the joys of your family. I loved Lynn's encouraging post and sure it provided you great comfort.
Cat pic makes me smile.
Momallthetime I am likely mis spelling the trial. But the Embraca trial is testing the use of parp inhibitors vs. treatment of choice for pt.s with brca related metastatic breast ca. Parp inhibitors have shown promise in brca related breast and ovarian cancers. It is a global study with 400 patients world wide. I find out next week if I get the trial drug. I found out today my scans met criteria for the study. I am participating in the trial at Swedish Hospital in Seattle. So alot of travel, but I think it is worth it
Peace to all
Mary
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Mary it sounds very exciting, do you have the BRCA mutation? I was trying to understand.Are you on any treatment now?
Deanna if you could still find out about the Bone scan vs Pet/CT I would love to undertand. Dr Google in most references they say that Pet/CT is more sensitive ( she has not problems of getting it approved), that bones scans are good to detect disease but not as sensitive. Bone scan also pick up most blastic lesion not lytic. And in all her reports she had lytic. She did go to a full body bone scan, and will go for a Pet/CT this week. That's one thing that threw me off, if she was having the Pet/Ct why does she need the Bone scan. We see it as a waste of energy for her. So the office answered finally, that it's due to her diagnosis, because she has bone mets. Yeah, but she has it in the brain, skull, liver and many other places, so a full body PEt/Ct i think would be more indicative. We are confused.
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Landed in Paris at 11. Met our dd had lunch, shopped at Bon Marche and did a little sight seeing.
Here's a picture of my DD& DH
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Hey Babs you certainly put a smile on my face. What a fantastic picture. Perfect weather? Not too cold not too hot. And you accomplished so much already? What are you gonna do the other days? Get one of those cute French to take a picture of you guys together next time!
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Babs, Wonderful pictures, thanks for thinking of us. That is a beautiful picture of your smiling DD and DH. Wow, it sounds like you are not wasting any time. Have fun, enjoy yourself, and keep posting photos. Don't forget to rest once in a while.
Lynne
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babs great pic. Enjoy Paris and family. I agree get someone to include you in the pic
Amy. You sound strong. Love the attitude. Keep it up
Momatt. I take pet scans. My mo said pet will show stuff way before ct in general but ct is better for bone only cancer. He is going to rotate between the two
I am bummed. Ran fever twice yesterday and once at 3 am. 102.7 and 102.9. Diahrea is better and I feel good. Dr said I had to be fever free for minimum 48 hours so the earliest I can get put is thanksgiving morning. Starting a second antibiotic. My white count has bottomed out and my lungs are congested according to stethescope. I certainly don't notice it. Dr not sure if both from infection or not. Got a breathing thing to help clear lungs.
Well crud tech just came for vitals and temp 100.5. Nooooo. Now another 48 hours
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babs, fantastic!
My advice, in my opinion the best view of Eiffel Tower is from Trocadero, or walking from Alexandre Bridge along Avenue de New York, or walk across Grenelle Bridge, and in the midle of bridge go downstairs to the Island (Ile Aux Cygnes) and walk down the river towards Eiffel Tower. View are amazing:) Especially every evening from sunset Eiffel start lighting:)
Have fun!
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Babs, I love your photos and always so happy to see any of us travel! I want to know what's in DH's bag......something fab for you?
Patty, Wish you could spring out of there for Thanksgiving. Hoping the second antibiotic gets it all under control quickly for you.
Love the cat picture.
Mary, Good to hear from you.The Embraca trial sounds very interesting. I don't have any BRCA mutations, so I'm not a candidate. I had a friend who was on a very early trial for Parp inhibitor about 6 years ago at Michigan and did quite well. Best to you.
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Patti thanks for you input sweetie. Argh... gotta get you better quick. Can you see the kids there, or better not? Counting down for you to be outta there.
Lindalou someting fab, yeah for sure!!
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Patti - Remember that they can't keep you in the hospital. If you feel okay, there are a lot of reasons to be home for Thanksgiving. Don't let their (well intentioned) protocols interfere with your priorities.
Can your family reschedule Thanksgiving for the weekend? Our family reschedules holidays all the time to suit our needs. Thanksgiving will be on Saturday rather than Thursday this year for us to allow more time for cooking. My husband doesn't get Wednesday off and he's the cook so we need more time. But for many people Thanksgiving is Thanksgiving and Thanksgiving is on Thursday. You may need to go home on Thursday morning. Just a thought.
In any case, looking forward to hearing that you are well and at home. In the meantime we want regular updates on that fever and how you are feeling so our prayers can be very specific ... (We'd like regular bowel movements and a 2 point drop in temperature and all pathogens cleared from Patti, please)
>Z<
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Love the Paris photo, Babs! Your daughter and hubby both look so happy. Hope you're continuing to have an absolutely fabulous visit!
MomATT, I'd emailed my sister with your question, but haven't heard back from her. I'll let you know as soon as I do. She's been at a medical conference and evidently hasn't had time to check her personal emails.
Patty, as you've found out, C-diff can be incredibly virulent. While it's disappointing not to be getting out with a holiday coming, I want the C-diff to be gone once and for all, so that you will never have a repeat of the absolutely miserable relapses you've gone through multiple times. So hang in there, and try not to let it get you down. I like Z's idea of doing it over the weekend -- as long as you don't try to do it all yourself. You'll probably need a lot of rest, even after you get home.
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Lynne no time to rest!!!! I have so much to deal with when we get home I need to pack all I can into this trip!!! And while here I intend to shop a lot. Today I got a great pair of dressy booties on 30 off sale. Still pricey but what the heck!!! Tonight we had dinner with DD and her boyfriend. He's just great. And you can see how in love they are!!!! Tomorrow night he's making dinner for us and 3 of his 4 sisters with their bfs or husbands. Such a sweet young man!!!!
He found the hotel we're in and made sure to pick out the room too. He did great. We're in Trocadero- right near their place and the Arc d triumphe. Pretty spectacular
Hope everyone has a great week!!!
Babs
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hi all,
Babs, fabulous picture of your family, I agree with others that we want one of all three of you.
Mary, glad you're back, will be interesting hearing about the trial. Good luck!
Patty, if you can get rid of c diff for good, better than getting out early and having it come back.
Amy, it is sometimes hard to focus on anything other than C, but I'm glad that you have a good distraction while you figure out the next step.
So nice to see some familiar faces back again. I know I need a break every once in a while but also know how important all of you are to my sense of well being. Hugs to all, cheers, de
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Hello Fellow Bone Mets Ladies,
I haven't been on here in quite some time but need to check in this evening. I had a single bone mets to the right hip in Dec 2008, treated with Zometa and Femara for 3 years before progression to spine in 2011. I've been on Zometa and Fasolodex since Oct. 2011 with all mets remaining stable.
Today I got the call from my Onc that I have multiple new bone mets including skull, additional spine and also femur. My CT Scans remain negative. I have been totally out of the loop on what the latest treatment for ER+ bone mets is and I'm a little bit in shock. I am seeing my Onc early in the morning but wanted to pick a few brains on here as I know you all are the best resources around!!
Any and all info would be appreciated!!
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MomATT, I heard back from my sister this afternoon. Her response and the 55-page document she attached do not provide a simple explanation, probably b'cuz there isn't a simple one. I'm going to PM you what she sent me, and revisit the question here in the future, after I've had time to look through the info myself. On first glance, it's way too complex to comprehend and share here. Deanna
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Hi Susan - adding Ibrance to faslodex is one option. I would review Bestbird's guide to metastatic cancer. You have to contact her to get it. It is the most current and complete guide to MBC. In the meantime, consider this excerpt from her guide about the sequence of hormonal treatments. Most women want to stay on hormonal treatments for as long as possible and there are more lines of hormonal treatment than some doctors offer.
Bestbird mentions Afinitor as an option and it is definately part of the standard of care. I am not a fan. Ask for overall survival statistics and a thorough discussion of the side effects if you are offered Afinitor. And now ... these are Bestbird's words ...
The sequence of providing hormonal (endocrine) therapy for postmenopausal patients will vary, as much of it depends upon what - if any - hormonal therapy drugs the patient has previously taken. Generally, there is a choice of providing single drugs or a combination of drugs, with combination drugs generally precipitating more side effects. Patients are urged to discuss the various options with their doctor and to verify insurance coverage, since it is possible that some of the combination drug regimens listed below may not yet be covered by insurance.
The following sequence of single or combination hormonal therapy drugs has been lifted from a presentation made by Dr. Maura Dickler of Memorial Sloan Kettering at the 2015 San Antonio Breast Cancer Symposium. Her recommendations are based upon the results of clinical trials as well as her own clinical practice. From: https://sabcs.cmeoncall.com/OnlinePlayer/153
- Single Agent Hormonal Therapy Sequence:
- First line treatment should consist of a non-steroidal Aromatase Inhibitor (AI) such as Letrozole or Aromasin
- Second-line treatment should be either Faslodex (500mg) or Aromasin
- Third line treatment should be Tamoxifen
- Fourth line treatment may be either Toremifene (Fareston), Estradiol, Megestrol Acetate (Megace), or Halotestin (Fluoxymesterone)
- Combination Hormonal Therapy Sequence:
- First line treatment may consist of a combination of either Arimidex and Faslodex (500mg), or Letrozole and IBRANCE
- Second-line treatment might be a combination of either Faslodex (500mg) and IBRANCE, or Aromasin and Afinitor. Note: In second-line treatment, the combination of Faslodex and IBRANCE more than doubled progression-free survival (PFS) compared with Faslodex alone. From: http://www.medpagetoday.com/MeetingCoverage/ASCO/51855 )
- Third line treatment could be Tamoxifen and Afinitor
- Fourth line treatment, which is a single agent, may be either Toremifene (Fareston), Estradiol, Megestrol Acetate (Megace), or Halotestin (Fluoxymesterone)
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hugs ladies. Still hanging tough at hospital. Last fever was yesterday around 11am.
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