Bone Mets Thread
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We did go to see Neuro Onco, we were getting conflicting opinions from Neurosurgeon and RO for the Brain mets. So Neuro said absolutely no surgery, she cannot be without chemo for as long as it's needed pre and post surgery. And he did an emergency BRAIN MRI because Dani felt new things, and then right after he communicated with RO and she had the simultation for the Rads were done asap, and she is having Rads these days.
Also, at the visit at the Onco's on the 13thDani had even more pain in more areas, so she put her on Xeloda asap. Really it took 2 days, but she got approval. Also disturbing to us, and I don't understand, when I was speaking to Ins. Person to ask about when they will approve Xeloda, she said it's getting harder for her to get approval and that it being 3rd line the next treatment will be only approved Peer to Peer, I did not wanna go deep in convo with her,but she really upsets me. Dani is doing stuff, at her own pace, she is part of society, and we cannot just tell someone that is living and aware and doing things that there is nothing there for that person.
We are not there, but the way she sounded, my SIL pays a fortune for this Ins., but after this, he is definitely looking into another Ins, even if it's gonna cost a lot, because it's not an option in getting a NO from INS if Onco thinks it's possible. And Onco is very pragmatic, she doesn't make any decisions without the Tumor board, so this won't be just an ONco doing something on a whim. It was a very disturbing conversation, if it had come from Onco, it would be bad enough, but not from Ins. But what is 3rd line anyway? This person is supposed to cover Mets people, but she can't believe that Dani is doing stuff, I keep telling her I am in contact with a lot of people and they are all doing stuff, it's not you got mets and you are done! It's so frustrating. I can't complain about her, because the next agent, is probably gonna be sitting at her side, and it won't be helpful. It's their policy.
So now, Dani is on Xeloda 1000mg (twice a day), Herceptin every 3 weeks, (but they forgot to give it the time before, I asked them about it, and they said it was a typo, they are supposed to be giving it), Ixempra and Xgeva every 4 wks.
They sent a blood sample to FoundationAct and among the Genomic alterations is the KRAS equivocal 0.36%, with clinical trials closed in NY for sure, ERBB2 which most tx did not work for her. ESR1 and s[lice TP53 . But the KRAS one is the one doc is concerned with. Aghh. For now she put her on Xeloda.
I will try to put alllllllll her profile next time, but she has ER+PR+HER2+ luminal B 3/3
This is where we are at. Going ahead.!
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momallthetime, it never ceases to amaze me how thorough you are in addressing everyone here when you've got so much going on. Thank you for the update on Dani, I'm sending you both love and hugs. Praying that the addition of Xeloda turns things around for her.
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Hi Annie, how are you doing??Thank you. See I missed you, I must have missed some other nice ladies. Kathryn, thx as always, Wendy sweetie how are you? I know I skipped someone. Wish a peaceful night to all...
Carol what's up?
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hi momallthetime
So amazing that you think of all of us when you are going through so much. I am having local rads to one spot in my skull. (15 daily treatments dose 200,if I remember correctly) I have 4 other spots that are not being treated because they are small, not close to my brain and not causing symptoms. My RO consulted with gamaknife neurologist who said local would be better. They wanted to radiate a bigger area than gamaknife could cover.
Sending you and dani thoughts of hope and peace.
Mary
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Momma, You truly are soldier in Dan's fight. I admire all you do for her.
Amy, How is your pain?
Louis, Glad to hear your wife is home and she has you for her care taker. You are the best medicine for her recovery!
Rachel, Thank you for marching in Washington and making a difference. Macaron is adorable.
Aurora, Are you feeling any better?
Mary, How are you feeling? Any side effects?
Has anyone had the Foundation One Genomic testing? I'm looking into it. I've had PALB genetic testing recently and showed no new mutations.
Wishing all of you strong women and men a good week ahead.
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Lynne are you back from Hawaii?
Carol, How are you doing?
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Lindalou thank you for asking I feel slightly better than yesterday I called my specialty pharm to get Xeloda but they need to get a foundation to cover the 20% Medicare doesn't pay, should know more tomorrow. Also tomorrow I will get my 3rd rad.
Aurora
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Momall you are amazing!!!! I hope the xeloda helps Dani!!!
Lindalou. I'm having another liver biopsy this coming Friday for the Impact Assay Trial at Mskcc which is their version of the Foundation One. I've had 2 prior biopsies that didn't yield enough tissue. I'm hoping the third times the charm!!!
Babs
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I am way late responding, Chelle, but my condolences to you on the passing of your grandfather. Good news that you won't need the bmx!
Mommall, you are such a warrior for your daughter and amazing you manage to address everyone individually with all you have going on, which I'm not able to do. Always have you and Dani in my thoughts. Sure hope the Xeloda will work for her and looking forward to that good news.
So good to hear that many have good news. (((Hugs))) and positive energy sent for all who are recovering and dealing with pain and treatments.
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Good morning ladies and gents.
I had a little good news over the weekend which solves a question I have had. My hip MRI last month showed bone mets, arthritis and avascular necrosis but the pathology report which I reviewed yesterday showed strictly arthritis and nothing more. This is a huge relief because I've been questioning whether I should continue Xgeva which has been tied to avascular necrosis.
In light of this I'll continue with my quarterly Xgeva and move on. I'm feeling better every week and a little stronger as well. Have been able to ditch the walker and have been able to do a few household chores without using my cane. While I'm not driving just yet, I know I'll be ready sometime in the next couple of weeks.
Thanks for the continued support and well wishes.
Amy
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Aurora, glad to hear you're feeling a little better. Hoping your third rad treatment goes well for you.
Babs, best of luck to you with your liver biopsy on Friday, praying they get enough tissue.
Amy, that is great news! I'm so happy to hear that and glad that your mobility is improving. You've done very well and will be driving in no time.
Hugs to all, Annie
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Happy Monday everyone, I finally have my plan in place, after two biopsies on my L2 vert. I'm all ER+, so I'll be starting Lupron, Letrozole, and Ibrance, as soon as the specialty pharmacy works all that out, and already on the xgeva. I've never had to do deal with the specialty service before, does that take awhile? My pain got really bad last week, so I'm also starting radiation in the next day or so for three to four weeks on 4 spots on my back. Radiation is also new to me, but doesn't sound too bad, right? I hope! I spent the weekend on dexamethadone and tramadol and even though I feel drugged and sluggish, I can sit/lie down/walk without too much discomfort again. The pain is really mindblowing sometimes. What's the Ibrance like? Any weird SEs?
momallthetime--thank you for the great suggestion for a group for my son. I'm working with his teacher right now to make sure he is ok at school--they have a counselor on campus so I think I will start with that. Right now, the kids seem to just associate all this with my pain and inability to take them to the zoo and such, so it's more of a frustration than a fear. And they are happy because I've let all my screen-time rules fly out the window. Thinking of you and Dani!
I know there are other threads for complementary/alternative options, but wondering what you guys incorporate into your daily diet/supplements that you think are useful and don't mess with the meds you are on. I have a whole spreadsheet of things people recommend, but some of it is pretty kooky. I am drinking lots of green tea and eating handfuls of broccoli sprouts, drinking turmeric milk, trying to cut out sugar and gluten...but there are so many opinions out there. And my husband just brought back truffles from Switzerland, sigh. Also not taking any supplements that I don't clear with my MO/RO.
Have a great day! It thundered and rained here in LA this morning, which isn't newsworthy for anyone but those of us that live here and never get to hear thunder, but it was exciting!
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Girl with a curl - Please join us on the ibrance thread for details about Ibrance. It's very active. The ladies have a broad range of experience. Ibrance can have a broad range of side effects, but many people have none. The trickiest to manage is neutropenia which can have no symptoms but still effect the treatment protocol. Ibrance is new to many good oncologists. I find the ladies on this thread more informed about how to stay on the protocol and manage the side effects.
I had one bone met to my sternum and Ibrance/letrozol alone knocked it out in a short time. I am confident that the source of the pain will be behind you very soon. In the meantime, be aggressive in treating the pain.
I am on an extensive complementary protocol overseen by a naturopathic oncologist and approved by my oncologist. There is very little that is contraindicated on this protocol. Reducing simple carbs, green tea, broccoli and turmeric is a fine place to start. Nothing wrong with chocolate in moderation. Anti-cancer a new way of life is a great book that may give you some more ideas. I strongly recommend a board certified complementary doctor, preferably an oncologist, on your team to guide you in the complementary space. It's medicine. Dosage and bioavailability and how the treatments work together is as complex any aspect of cancer treatment.
Exercise is the single most important thing for managing the side effects of these treatments and for fighting the cancer .... when you are ready.
>Z<
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AmyQ...I'm so happy for you! Out of that damn walker and gettin' around with just a cane when you need it. That's fabulous....now you don't feel like you're in your 90's so much anymore. You'll be driving again in no time. I had to wait a couple of months b4 I could start driving again, but I really enjoy driving now...helps me get my mind off Mr. Cancer.
Lita
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Amy that's great news!!!! Soon you'll be driving again-independence!!!!! Yeah!!!
Babs
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Momall, I didn't get an MRI, but did get a full body ct, as well as PET and bone scan. I've had this vertigo before during my lifetime, and at times it has been severe. I'm wondering if it has anything to do with the Femera, because hormones in the past have seemed to have something to do with my vertigo. It is worse after I lay down, and get up. It's the getting up part that starts it. Once my head raises, there it is. But it does get better the longer I am up and around. Am using some Meclizine too, which is supposed to help dry your inner ear out and it seems like it is helping a little bit.
Thanks to everybody for your suggestions.
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Gracie- I've been thinking about you. Hope you are not as fatigued now. Like you, I've had vertigo related to inner ear stuff for many years. And it started during perimenopause. (My daughter is having some now). One weird thing I read that seems to help is that when I'm a little dizzy, I shake my head and it helps. It's something about getting that fluid the settle down.
Hope you are feeling better.
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My happy dance update. I've been on Faslodex since early June (after a year on Ibrance)
Tumor markers have skyrocketed and the PET scan 2 months ago was not great and I had constant pain the the T3area and my left iliac. Those two areas were radiated.
Yesterday I had labs and PETscan. I saw the results this morning and will see my MO tomorrow and RO Thursday. Results are all good/stable except the TM. I predict MO will say ignore the TM and continue on!
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Kaption - It's great to have solid scans heading into the holidays. Enjoy! I wish we haf a blood tests that could tell us the status of our cancer, but we don't. Faslodex is a great drug that works for a long time for many people.
>Z<
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Great news, Kaption! Doing the happy dance for you! I do think our meds can cause a lot of the pain we fear is progression, and increasing TMs absolutely up the mind game mbc can be! So glad you've gotten good news!
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Thanks, Z and Deanna. Feeling pretty positive today!
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Hi all. It's been a while since I've posted here. Congrats Kaption on the good news and to all others in the many pages back that I will try to read later.
I wanted to post an update about my brother. He just got out of the hospital last night because of suspected spinal cord compression. It was a scary last couple of days. He was in so much pain, 10/10, and the meds he had didn't help at all. The doctor was very concerned with how he was doing and immediately wanted him admitted to the ER. He was moaning the whole time and couldn't focus because of the pain. He couldn't even move his legs without screaming in pain. They did an MRI and thankfully there was no compression but there might be a fracture. It isn't 100% clear in the MRI. Thankfully they gave him a different pain medication (I think dilaudid) and now he is able to do things on his own and has done a complete 180 in how he feels. Almost like his old self and it makes us all happy to see him feeling better.
He had just finished a cycle of Carboplatin and his PET was worse, even though tumor markers were going down slightly. There is also new activity in the liver but they couldn't identify a lesion. So now his doctor wants to start on Halaven. Frankly I think he needs a second opinion. I get the feeling like his onc is just going down a random list and assigning him the next chemo without giving us a real reason why it might be better than other choices. Right now I'm helping him on getting an appointment at UCSD breast cancer center and I think he should take a short break from treatment until he hears out the other oncologist. He is scared that he might be risking more metastasis if he waits for an appointment. What do you all think? Is a 2-3 week break okay?
Sending you all hugs
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good afternoon
Amy. Great news!
I am having good days and ad dss. Back pain see!s to e back pretty consistent. Boo. I thought Exloda had taken care of it. But it still us better then it was. Sunday night I took dss to local campground that each camper had Halloween lights and decos up. We walked the entire place about 1\2 mile and I did fine. Dh colored my hair when we got home and my back began aching after sitting in the hard chair about 30 minutes but still was able to stay swake and upright til after boys went to bed at 10 pm. Yea !!!
Hugs to all
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Kaption - Woohoo! Happy dancing with you.
Amy - What a relief it must be for you as you get your independence back.
Loving - So glad to hear pain is better for your brother. Personally, I would not stop tx unless doc agrees. Let us know the outcome of the second opinion.
Patty - haircolor change?
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Lindalou, I am back from Hawaii, but I have to admit that I was protesting all the way to the airport. My DH and I had a wonderful and relaxing 10 days. There were no scans, no shots, no infusions, no pills, no dr appointments, and in my mind, no cancer. My blood counts really took a dive in cycle one of Ibrance and had not rebounded before the trip, so I had to delay cycle two. A benefit of that was the increased energy I felt while I was in Hawaii. Now we are back to reality. I started a reduced dose of Ibrance last week, and I had my Faslodex shots and Zometa infusion yesterday. My DH had a CT scan last week, and the news was all good. There is no sign of a recurrence of his kidney cancer. YAY! His next scan will be in six months. I noticed that you participated in a bc walk. Thank you for educating people about MBC. I hope you are doing well.
LindaE, Have you received the results of your latest scans? Have they made a final determination about whether or not you have progression? It sure has been a crazy ride for you.
Wendy, Have you heard from Dee? I am worried about her. I think she was having a scan this month and also planning a trip.
Amy, I am happy to hear that you are recovering from surgery and beginning to feel better. You have been through so much lately. Isn't your daughter getting married in two months or is my memory failing me? ( A memory failure is a very real possibility.) I hope you continue to improve.
Kaption, Congratulations for your scan results. Stability is fantastic. I know we all yearn to find NED, but I would be very happy with a finding of stable. I am joining Deanna in the happy dance.
Gracie, I hope you can find some relief from that vertigo. I am sure it limits your activities and makes you feel yucky (a technical term, of course).
Patty, Are you okay? We haven't heard from you lately.
Girlwithacurl, I will give you the wisdom of my vast knowledge of specialty pharmacies. That was sarcasm, btw. I have only received two cycles of Ibrance delivered from a specialty pharmacy. I must say that my experience has been positive. Once all the paperwork, including pre authorization from insurance company, was sent by my MO's office, it only took two days for me to receive my pills. This cycle the pharmacy called the MO's office to confirm new dose, and I had the drug in my hands the following day. They have followed up with calls asking how I feel and when I will need refill. They were even willing to overnight the pills to my hotel in Hawaii, if necessary. I am sure all pharmacies are different, but so far I am happy with mine.
Welcome to all the newbies. I see that you are getting great support here.
For all of the caregivers who have posted here lately, you have my sincere admiration for all that you do. I have problems scrolling back to previous pages while I am posting, so forgive me for not mentioning all your names. Your unwavering love and support for your brother, daughter, wife, and others, is not going unnoticed. As a cancer patient, I can tell you that my caregiver, my DH, is a cherished part of my life. I know how much he does for me and how often I forget to tell him how much it all means to me. His constant support, his patience, his very presence, means more than I can say. I am sure that your loved ones feel the same way about you. I realize what a difficult role it is to take on. I know you sometimes feel scared, frustrated, sad, alone, helpless. You are all heroes to me.
Hi to everyone else. I have not intentionally left you out, but I have to run.
Hugs and prayers to all of you, Lynne
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Patty, good to hear from you
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lynne. Great news on your DhS scans. So glad you had a great time on vacation. Got pics ? What an inspiration you are. Love that you are LIVING life and enjoying it. Keep it up !
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Living - I feel that a second opinion is important at every change in treatment. The later the stage and the more complicated things have gotten, the more important it is to get one at a cancer research center. There is not cookbook for metastatic cancer. I would not stop treatment if you can avoid it. You can always switch. I think. Talk with the oncologist. They generally are interested in the opinions of other doctors and will help you figure out how to go about this.
>Z<
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Lynne - Welcome back! and yay on dh's results. Dee is taking a break from BCO but we have been emailing and she's doing very well. Latest results for her are stable. I am still "patiently" waiting for results.
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Loving, I feel for your brother. That was me 6 mos ago, in ER with screaming back pain from compression fractures AND spinal compression. Glad he's better.
Patty, it may take a couple of cycles for Xeloda to kick in and help with pain.
Lita
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