Bone Mets Thread
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Oh Babs thanks so much for the pictures. What a lovely gift to us. I've only been to Italy (honeymoon 13 yrs ago) and have wanted to see more of Europe ever since. I keep telling DH we need to do this while I'm still healthy enough to enjoy it (granted that could be for many years yet but why take the chance). More pictures please!
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thank you girls for your warm welcome I don't feel quite so alins
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Adding my welcome, Delvzy. I don't know how close you are to them, but there are some wonderful ladies on this site from Aus, including Chrissyb, who I see has commented on at least one of your posts already. And it looks like you and I have a similar hx -- orig Stage II w/1 positive node dx in 2008, so I can totally relate to the surreal experience of finding out it's back in our bones. Hopefully Letrozole will be a wonder drug for you for a very long time. Is Ibrance (palbociclib) approved yet in Aus?
Babs, your photos are so beautiful! Christmas in Strasbourg looks and probably feels like a fairytale!
I hope everyone had a wonderful Thanksgiving. Patty, how are you feeling?
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So sad to be the bearer of this news, but Cristina's (cjanet's) husband, Seiji, just shared on FB that she passed away peacefully this morning after a very brief time in Hospice. A follow up post from a friend sums up the shock and sadness...
"One of the sweetest people I've ever known just died. Cristina Janet Tebolt leaves behind an adoring husband and two young children. Fuck cancer."
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Deanna--I know. I'm so sad. Cristina was the first person with MBC I met in person after diagnosis. She and her son visited my neighborhood and we went to the playground this spring. It just seem so fast. My heart breaks for her children
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Deanna, thanks for letting us know. My heart aches knowing she left behind two young children. I will always remember Cristina, she was so sweet. I'm at a loss for words, this is just so unfair.
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Deanna, Thank you for letting us know about Cristina. I am so sad to hear this news, and my eyes are filled with tears. This has hit me hard. I always prayed that she would find a treatment that would work. From the very first time that I read her posts, she seemed to sense that her MBC was aggressive and she would not live to see her children grow. I wish things had been easier for her as she struggled in so many ways. Her wonderful children were her life. May her family be surrounded by loving support and may they find peace and comfort in the memories of their loving Cristina.
This diseases sucks.
Lynne
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Deanna - Thank you for the opportunity to send our prayers of peace and strength to Cristina's family. She is in my thoughts today.
>Z<
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Another angel has left us!!! So sad for her family. She and I met when she came to MSKCC for a second opinion. Cancer really does suck!
Babs
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So sorry and sad to hear about Cristina. She was dealing with a lot these past few months. Her family is in my heart today.
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Thank you Deanna for letting us know. It just breaks my heart. Prayers for strength and courage to Cristina's family.
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So sorry to hear about Christina! I also had the feeling that she knew she didn't have long, but this seemed to happen so quickly. Prayers for her family, especially her children
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Thanks Deanna for letting us know about Cristina. Too fast, too soon, too young!!
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I have no words my heart is broken. Those poor children ....
May she rest in peace
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Cristina, she tried so hard. The children, she wanted so much for them. It happened so fast. What a blow. Cristina thanks for always caring, go with the angels.
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Deanna, the link you sent re: scans, helped so much to understand images. Thank you!
Today at the visit with RO post Rads to the brain, and skull bones, she was totally unimpressed at the Bone Scan that Dani had done, because Onco wanted it. First off for brain, MRI is the only modality they really go by. And for the rest of the body, she also said Pet/Ct is more accurate and detailed. Thank you. We are quite p-off with Onco, for insisting on the Bone scan. Bone scans are really better to settle doubt if there are lesions, and some of them do not appear on Bone scan, not as early as Pet/CT. Also, of course one could see the organs in Pet/CT. Pet/Ct is more expensive, and I really think IT IS the only reason she did not stick entirely with it. To show on paper that she orders Bone scans also? Insurance has no problem paying. No pre-auth necessary in her case, the machinery is there, why would she be so adamant about it.
We have the visit tomorrow with Onco, we'll see what she says. But she better not push this again. Telling us that she ordered Bone scan due to her diagnosis, it's just not true. I am trying to figure out how to tell her something, w/o killing the non relationship.Very disappointed. We will also see tomorrow if treatment stays as is, which I think it will.
It would have been nice for Onco's office to send a message at least, letting us know that some things are better (some are worse, some are new, some not there!), yep. What did she think, we are just waiting a whole week to hear from them, when they have the results the same day. We make it our business to get the report, either sent to Primary doc, or I go to pick it up myself. I also like to know before the visit, so I could know what to expect.
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Thanks for letting us know Deanna. It takes me by surprise and I'm just relieved that she had stopped working finally and had at least a short time with her children with that stress taken away. She and I had emailed about our shared family struggles. I'm heartbroken for her children. May she watch over them with great love and peace
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Androgen Receptor Positive. Will get results tomorrow at Onco's visit. If Dani has triple positive and has AR+ then aside from clinical trial, is anyone familiar with this receptor?. Trying to find info. But i can't really understand AR+, Is is a good thing to have? TIA!
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momallthetime
Role of the androgen receptor in breast cancer and preclinical analysis of enzalutamide
This is a pretty technical article, but the androgen receptor is one of the complicating factors in triple positive (Luminal
Targeting AR may prove useful in patients with recurrent ER + disease. If the long-term selective pressure of drugs targeting the E2/ER pathway leads to tumors switching to dependence on androgens, initial treatment with both AI and enzalutamide may be beneficial. In summary, our preclinical data support the initiation of clinical studies evaluating enzalutamide for treatment of AR + tumors regardless of ER status, since enzalutamide uniquely blocks both androgen-mediated and estrogen-mediated tumor growth.
breast cancers. But it does appear that they are investigating enzalutamide in cancers that have this receptor including triple negative breast cancer, prostrate cancer (already standard of care as frontline treatment) and liver cancer (not breast cancer that has metastasized to the liver), ovarian cancer, and salivary cancer.The article suggests this an area of investigation for a clinical trial. Perhaps her treatment team is considering a clinical trial for her?
More info from the pharmaceutical company investigating XTANDI
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momallthetime
There are several clinical trials that are recruiting participants for enzalutamide in AR+ breast cancer. Most of the focus has been on triple negative cancers, but they are also investigating HER2+ cancers. Here are just a few:
Recruiting: A Study to Assess the Efficacy and Safety of Enzalutamide With Trastuzumab in Subjects With Human Epidermal Growth Factor Receptor 2 Positive (HER2+), Androgen Receptor Positive (AR+) Metastatic or Locally Advanced Breast Cancer
Recruiting: Efficacy and Safety Study of Enzalutamide in Combination With Paclitaxel Chemotherapy or as Monotherapy Versus Placebo With Paclitaxel in Patients With Advanced, Diagnostic-Positive, Triple-Negative Breast Cancer
Not yet recruiting: Fulvestrant Plus Enzalutamide in ER+/Her2- Advanced Breast Cancer
Recruiting: A Open-Label Study to Evaluate the Safety, Tolerability, Pharmacokinetics, Pharmacodynamics and Efficacy of VT-464 in Patients With Advanced Breast Cancer ( Patients must have either advanced AR-positive triple-negative breast cancer or advanced estrogen receptor-positive breast cancer.) The drug they are investigating (VT-464) is gong to be used for AR+ breast cancer regardless of ER status - you can be negative or positive.
I believe that some of your oncologists have looked at newer treatments that include drugs for triple negative cancers. If Dani is AR+ that makes sense.
This particular area of research is pretty hard to wrap your head around if you are lay person, and even the experts in the field say there is still much they don't know about E2/ER pathway in their genetic modeling pathways. But this pathway is important in a number of pathways, including liver cancer (not breast cancer that has metastasized to the liver).
If you want my opinion about whether this is a good or bad thing, I would say AR+ is a good thing. Much like learning that women were HER2+ was a good thing. Because it led to the development of Herceptin and the many targeted therapies they are investigating today - all of which has led to longer overall survival and treatments that are more easily tolerated by the women with the disease
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momallthetime
I thought I would add some background information regarding bone scans, PET scans, and MRIs. Just because your Radiation Oncologist was "unimpressed" with the bone scan does not mean that the Medical Oncologist doesn't have legitimate reasons for wanting a bone scan result.
As you know, I recently was treated for brain metastasis. It was detected by a PET scan. So you might ask why does the Radiation Oncologist need an MRI of the brain? Because my radiation therapy was delivered by a computerized radiation machine called TruBeam. This a 3D computerized machine that delivers radiation therapy directly to cancer cells. It's meant to kill only cancer cells, leaving healthy cells undamaged. But they created a mask for me that I wore during each therapy session to keep my head in the precise position it needed to be to prevent damage to healthy cells. A PET scan is simply not accurate enough for this purpose.
Your medical oncologist uses the PET scan to determine if there has been progression of the cancer, but it doesn't always help determine if there are other things going on with the bones that may have an impact on their treatment plan. I met with my Medical Oncologist a week ago and I told him that I had noticed an increase in symptoms in my left hip (PET scan had detected a small spot in my left hip back in October). We had not started T-DM1 yet, so I'm sure that small spot has grown a bit in the past 7 weeks. We talked about a trip back to the radiation oncologist for symptom management, but I'm able to control the pain with Tylenol, Advil and Vicodin, so we agreed to give the T-DM1 a chance to kill off the spot first. Had I gone back to the radiation oncologist, I'm sure that would have meant some more specific imaging tests to determine exactly where they wanted to direct the beam on the radiation machine. You notice my MO never suggested a bone scan.
A bone scan has far more uses than would interest a radiation oncologist. And it is cheaper to perform.
After my last PET scan, I decided to look on YouTube to see if I could see what a cancer looks like on a PET scan. Interestingly, a young man with cancer had posted the results from his PET scan on YOUTUBE. As the patient, your daughter has the right to obtain a copy of the images of her PET scan. And her MRIs and bone scans.
Look At My PET Scan I was fascinated by this video. Loved the young man's attitude about his treatment.
What is best for bone metastasis from breast cancer? This doctor feels that a bone scan may detect bone metastasis that is missed on a PET scan (osteoblastic vs osteolytic) but it isn't always necessary.
Bone Metastasis A good general discussion by members of the treatment team for bone metastasis - including the inclusion of an orthopedic surgeon for surgery and the inclusion of an anaeshesiologist for pain management with an epidural. Both a radiation oncologist and a medical oncologist agree that there is a place for both PET scans and bone scans in detecting bone metastasis - due to the two types of metastatic bone disease (osteoblastic by bone scan, osteolytic by PET scan - breast cancer produces both types of metastatic disease)
One thing I've learned from working with specialists in the healthcare setting is that each specialist has their point-of-view and if one them feels strongly about their point-of-view, they have a good reason for it, based on their clinical experience and their treatment goals.
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yes girls I have spoken quite s few times with Chrissy b she is won
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pwilmarth, thank you for that clear explanation! It was very helpful.
My RO often takes me on a visual tour of my PET/CT results. It's very "enlightening." Lol!
Both of my oncs use a variety of scans to get information. There is no one best scan. Just last month I had a regular X-ray on my right femoral neck to make sure it's not close to fracturing. The PET/CT showed higher uptake and my MO wanted a close look to make sure it's not broken or about to break.
Btw, I have only bone mets, so that is all I'm familiar with at this point.
I've been in FL for a month and shared on some board that the right side of my chin has gone numb. I callled my MO and she told me to go the ER here. Went, had a CT, and was released- nothing scary at the moment. But, I anticipate a brain MRI will be ordered when I get home. Just to be sure :-)
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Pwilmarth - Thank you for the information! It is very helpful for all of us with bone mets.
Mommallthetime - Thinking of you and Dani today as you wait for test results.
Kaption - Enjoy the warm weather!
Thank you Deanna for letting us know about Cristina's passing. It was a privilege getting to know her here on BCO. Sending prayers for her children...she was too young. There have been quite a few losses lately. They remind me to be kind today, send that note today and love my family today.
Sending hugs to all! You keep hope alive and provide a safe place to share sorrows.
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it's been lovely reading through all your posts I haven't had the heart to update my profile to stage 1V messtasized to bone as I am still in some shock. No disbelief.
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Pwilmarth- Thank you for the review of AR+ treatments. If you search this forum, there are a few people on Xtandi. Another option. I have to say my head is swimming with options. I would like a frickin cure. But in the absence of a cure, options are good.
((MomAllTheTime)) thinking of you. You and Dani are in my prayers.
>Z<
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MomeAllTheTime I will take this moment to plagerize from Bestbird's guide ...
- In addition to ER, PR and HER2 therapies, Androgen Receptor (AR) therapies may be promising. Research indicates that 88% of estrogen-positive breast cancers, 50% of HER2+ breast cancers, and 25% of triple-negative breast cancers (TNBC) are Androgen-Receptor positive, making Androgen Receptors a possible target for many breast cancers. More information about AR therapies can be found in the section entitled "Research and Potentially Helpful Therapies."
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hi all!
Just checking in & getting caught up, was sad to hear about Cristina, what a shock, I feel so sad for her children & her DH of course.
MomATT, I have no advice for you, ((hugs)) you are a wonderful mom.
Babs, thank you for sharing all your lovely photos with us. I will never get there, but somehow it feels more real that seeing it through your eyes.
Welcome to all the new ladies, I'm sorry you're here & I'm sorry to see so many everytime I pop in to see how everyone is doing. What is going on?? we. need. to. find. a. cure. now!!!
I rec'd an email from Terre, she just had a bone scan done & she is NEAD, so yay! I hope she doesn't mind me sharing her great news.
I have a question. I am just finished my 5th cycle of Ibrance/Femera & haven't had a hot flash in 2 weeks, but I am freezing to death. Constant chills, can't get warm, even though the fireplace has the living room up to 75F, I'm under a blanket. 2 weeks ago if I had tried this, I would have been instant hot flashes. Lindalou suggested very low WBC & neutrophils. I didn't have to have my 2 weeks labs this time. I feel fine, a bit tired but spent 2 couple of hours raking gravel trying to get a 2 pack back in my tummy! ha ha !
I head back to Vancouver on Sunday, so I will ask when I see the MO, but thought you all might have some insight?
how is Patty? I missed an update, is she out of hospital? I saw that Stephanie has been released, I hope it was a freeing as she hoped.
take care all, you are all in my thoughts, even when I take a break, cheers, dee
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Dee, so nice to see you popping in. I'm afraid I can't help you with your question but I know whenever I've had a concern about something Lindalou has been a great help. Hoping you figure it out soon but sending you warm hugs in the meantime. Thanks for sharing the great news about Terre, I'm ecstatic that she is doing so well!
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Just got my scan results. My liver mets have increased in qty and doubled in size in just 2 months. All my other mets are still NED. Will be starting weekly infusions of Taxol.
Bummed
Bab
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