Bone Mets Thread

Lita57

Patti...Death Squad...I LOVE IT! I have been trying to put names together for my crew, and I thought of "The 'Watching' Dead" because DH and DD love "The Walking Dead" TV show, also "Death Patrol," or "Death Watchers," (remember that old song, "I'm a Girl Watcher" ?). Yeah, I have a pretty dark sense of humor, too. It's the only thing that helps some days.

Wendy...good advice. I only mentioned the $ aspect because when you leave even the smallest inheritance from your estate, it has to go somewhere. I know a lot of people who don't have kids, and they either donate it to charity, or the SPCA or another rescue org, or they leave it to their friends' kids...e.g. my DD will get one of my child-free BFF's annuities when she passes, and hopefully that won't be for a LONG time.

Lita

Casun19

Death Squad! Sorry but that made me laugh out loud (thank you for that)

Family is always complicated, I learned everyone shows their concern or love in different ways. Sometimes it just doesn't make sense.

QUESTION: when you get a second opinion from another oncologist, do you pay out of pocket or is this something insurance might cover? I like my MO but would be curious to hear from someone else...

Thanks!

GracieM2007

Stable!!!! Wow! I have to tell you I did not expect that today. CT shows activity but bone scan shows healing and tumor markers are down again. He will do a Pet in two months to confirm but he thinks the Ct might be healing spots and not new activity.

Thanks for all of your advice and views about the situation with my daughter. Nothing is resolved but she texted while I was in the doctors office and wanted me to let her know what the dr said. So I did. I have no idea at this point if it can be resolved because Emily absolutely never talks about her feelings. You've heard that saying it's like pulling teeth? Well that's Emily only you could pull all of her teeth and she still wouldn't talk to you. Her excuse is she doesn't like to get upset

So at this point I don't know what to do I'm going to go talk to my psychologist on Thursday about it and see what she thinks. I really do appreciate you all being here for me and allowing me to vent and offering your friendship and comfort while i am going through this hard time.

You all are the best !!!!

Sattipearl

wonderful news, Gracie

Sattipearl

Casun,

No apology needed. It's supposed to make you laugh. (And if you didn't laugh, that's ok too).

Patti

dlb823

Gracie, that's wonderful that your daughter called! In fact, that's huge! She really does care. I think Sherriw gave you some excellent advice, and I think your daughter's call today confirms what she suggested.

Casun, if you have a PPO, a second opinion should be covered without any issues. Just be sure, as always, that you choose a doc that is in-network, or be prepared to pay the higher co-pay. If you don't have a PPO or are uncertain about what your policy allows, you might want to call and ask about coverage, just so there are no surprises. The only time I've ever heard of women running into issues with second opinions is when they have Kaiser or similar plan, in which case you may have to jump through a few hoops to get a second opinion, as well as not be able to actually switch to anyone outside of their plan after you get that second opinion. That's just something I've observed here -- that with Kaiser second opinion choices are limited, difficult to arrange, and then sort of a dead end anyway.

babs6287

Great news Gracie-celebrate!!!
Babs

LindaE54

Gracie - Absolutely awesome news! Now celebrate!

zarovka

Gracie - CONGRATULATIONS on stable. So glad to hear it. Exhale. Let us know how you are doing on all fronts. GREAT idea to talk to a psychologist! And your daughter texted! I think that is pretty darn good.

I expect that your family situation will make a lot more sense to you in the next few weeks. Watch how you feel and how you see things now that the scan is over and the results are good (or rather EXCELLENT). Scans make me crazy.

>Z<

Bliss58

Gracie, wonderful news! Hard as it is to believe, your daughter may not realize she's not being supportive. It is progress that she texted!

Lita57

Gracie, I agree it's very big that your daughter texted. Thumbs up!

ChelleG

Good news Gracie, all the way around!!! Always look for the best in any situation, stress is usually a waste of precious time!!.

Love and hugs Chelle.

Sattipearl

My BFF and I met with my new attending MO this morning. We had an amazing conversation and near the end he said he agreed that I have less than 6 months, due mostly to the increasing intensity and more frequent symptoms I'm having. I was so relieved I started to ball. After I calmed down, we talked logistics. My next appointment with him is 2/3, to comply with the CA law that says I have to verbally ask twice, at least 15 days apart. I also have the form to fill out asking for the meds in writing, which I can give to him at that next appt. Then I see my regular MO who is required to certify that I'm inside 6 months of remaining life. I've sent an email to his scheduling staff requesting an appt also on 2/3, later in the day. He already told me that if the attending deemed me inside 6 months, he would sign off on it. Then once all of the groundwork is handled, the attending will go see the Pharmacist and order the drugs. Then I'll have them in 48 to 72 hours.

At the moment, due to out of town business for some of the Death Squad, I'll likely end my life near the end of March, if I don't suddenly go downhill, which we know is possible. Fingers crossed/prayers requested that I go out easy, and on my timeline.

I so appreciate that you're willing to 'listen' to this from me. I appreciate your caring and sisterhood-ness.

Love,

Patti

Ronnie3001

My Met is in my left hip as well and I had radiation to relieve the pain. I find water wellness classes (stretch and light cardio) help.

Take care,

Ronnie

Lita57

Thank you so much, Patti. We are learning so much from you.

zarovka

Patti - Quite a few hurdles to die the way you choose, but at least you have the option. You are so brave, but this is the way to do it. Hope I can stare down my fate with the same calm when my time comes. Thank you for the update, keep them coming.

>Z<

ChelleG

Wow Z, well said.

Patti, I am in awe of you. You have all of my respect. Your graciousness is inspiring.

Gracie, I saw this picture today and wanted to share it. As a reminder to all of us!!!

Wendy3

Chelle

Cita

Hi ladies,

I hate to only post when I need something because I know a huge benefit from this forum is the building of community. Thanks in advance for allowing me to seek counsel.

I was diagnosed in Dec 2015 with a bone met to the sacrum, 5 years after my initial diagnosis of stage 2 IDC. They biopsied the met and it was ER+ and HER2 equivocal (tested 4 times). My onc put me on Herceptin and Exemestane. Three months later, I had additional mets in my lower spine so I switched to Faslodex and Ibrance. Three months later I had an additional met in my upper spine so I enrolled in a clinical trial at MD Anderson for Radium/Xofigo injections plus Tamoxifen. Three months later I got GREAT scan results that showed only 3 lesions, all decreasing in SUV. However, the good news didn't last long as I just had a scan yesterday and the results show progression again - two new spots in femur. Currently, I have a total of 5 lesions in lower back/upper leg area.

I will begin researching other clinical trials but most likely will do Xeloda next. I feel fortunate because I have been asymptomatic the whole time. However, I am starting to worry about finding a medicine that will keep me stable for a good while. Does anyone have any inspirational stories to share or sage advise about treatment options?

Thanks so much!

Cita

Lita57

Cita...there is a Xeloda thread on BCO. You will find info there. Xeloda is an oral chemo and pretty well tolerated.

Lita

babs6287

Hi All

Wanted to share some great news. My daughter got engaged tonight in Paris where she lives PT with her now fiancee. They took a place for the wedding in NYC where we live for April 2nd. So much to do but happy I'm here to celebrate such a happy time with her!!! Her amazing friends have all contacted me to find out what they can do to help as they know I'm undergoing chemo-so sweet!!!!! They are so protective and good to me when she's away! I am truly blessed and having good scans last week didn't hurt!

Babs

jensgotthis

oh Babs! This is such wonderful news all around!!!! Very happy for you and your family tonigh

dlb823

Wonderful news, Babs! So happy for your daughter, her fiance, you and your family! And it sounds like she has some very special friends ready and willing to jump in and help! That's so nice and so exciting!

Cita, I'm so sorry about your continued progression. That must be very disheartening. My only suggestion -- and you may have already done this -- is to seek multiple opinions. You might also want to take a peek at some of the most recent posts (like the last 2 or 3 pages) to the Ibrance thread where others have asked similar questions and gotten some interesting responses about new trials and combinations. Here's a link: https://community.breastcancer.org/forum/8/topics/... I also can't help but wonder... When you were pulled off Faslodex+Ibrance after just 3 mos. due to 1 new lesion, how were your other lesions doing? Had they increased in size? I'm asking b'cuz Ibrance is known to sometimes take 5 or 6 mos. to really kick in, and I'm just wondering how much progression you had when you were switched that quickly.

Love the words of wisdom, Chelle. Thanks for sharing it.

Sattipearl

Babs, that is the best news this week!

Love,

Patti

zarovka

Wonderful news all around Babs! What an event to look forward to!

Cita - I am so sorry to hear about your progression. Here are some ideas from reading your posts. It seems like they have been treating you as hormone receptor positive. Being PR- can, sometimes, make you effectively TNBC. The ER may not work without the PR present. That is something to consider.

That said bone biopsies seem to be tricky. The procedure messes with the sample itself. It can be hard to tell what the hormonal status of the cancer really is. I normally urge people to get new biopsied before they decide on a treatment, but bone mets biopsies results are ambiguous and may not be worth it. Circulating tumor cell testing like Biocept is something to consider to get another data point on what kind of cancer you really have.

Deanna's comments, as always, are spot on. It is odd to be pulled off ibrance in 3 months because it doesn't work that fast. I am wondering why Xgeva and friends have not been considered. It sounds like you've been to MD Anderson. Having another onc or two on your team is necessary. Cancer is hard. There is no single onc with all the answers.

All that said, Xeloda is a great drug and will likely knock your mets to the curb.

>Z<

Lynnwood1960

Congrats Babs! Weddings are always so exciting!

AmyQ

Such great news Babs! Congratulations.

Amy

Apg

I am happy for you Babs! I hope to one day be here too for my daughter to get married. She is only 9 now so I have to make it a long time but I am determined!!

Cita, I am sorry to read about your progression. You will learn so much though from the ladies here. I agree that having a bone biopsy is not the best thing to do. I had multiple scans and MRI and they still had me do a bone biopsy. It was stressful and the results were not positive for cancer. They said bone is very hard to get good biopsies from. They said there was abnormal cells but not cancer cells in my sample. They didn't feel doing another biopsy would change the treatment they would put me on either. I pray you will find a treatment that lasts a long time.

---

Idun

Hello all,

I haven´t posted before, I think ;-) , but I have been living with bone mets since 2012.  I guess I have been lucky the first years after the diagnoses in respect to quality of life and i think it may mainly be related to the fact I decided I would not spend my energy to my previous stressful life so I stopped working and instead focused on my health and my family, I have a wonderful housband and 2 girls at the age 9 and 16.  I also seemed to answere chemos rather well even though I am BRCA2+ and TNG.  My mets have until now been bone only, mainly in spine.  Anyway, my health went seriously downhill last spring when I was diagnosed with mets in clivus.  I got very ill and got so disabled that I had to use a wheel chair for some time.  I underwent radiation therapie on the base of my scull and was stocked with so much pain/nerve and mental meds that I feel I own my own pharmasie by now.  Me and my onc have been talking about changes in my meds, since we have been looking at gradually rising tumor markers for some time.  He wants to put me on Irinotecan.  I had a CT on llungs and abdomen, MRI on brain and spine last week.  Unfortunately the CT showed enlargement on 2 lymphnodes behind the lungs and a spot in the liver.  The bone mets (which are now quite extensive through the spine and pelvis) showed regression.  Last Friday I met a jaw surgion, I have been growing an open bone in my mouth under my aftest molars in my lower right jaw, to be precise (-; .  The outcome came out as a shock!  I have developed Osteonecrosis of the Jaw, socalled ONJ.  This is caused by the bonestrenghtening drug in combination with the high doses of stereoids I ave been on sincce radiation of the scull.  So I am heading for a surgery on the 14th of February where my 2 aftest molars will be removed and the affected jaw bone will be removed.  I have googled this situation and it is no fun to think about this, actually I am devistated.  Does any of you have experience of ONJ?  If so, can you contact me and tell me about your experience?  I would so apreciate it.  My onc tells me I will have to take a pause from all chemo untill I have healed from this surgery, lets hope I will be able to start again a.s.a.p.

Thank you all for spending your time reading my went.  Kind regards, Idun

zarovka

Ldun - Your situation is not in my experience, but I want to send you my heartfelt support.

>Z<