Bone Mets Thread

It used to bother me a bit when some people make light of bone mets (bone mets are good mets) until I learned more and realized that for some people they can be and for others they aren't so good. If your doctor minimizes your worry, that's a positive sign. It all depends on where they are located and how extensive they are. A met to a rib is one thing, but when your doctor feels the need to tell you the warning signs of imminent spinal cord collapse/compression you don't think bone mets are so good.

My liver mets have been symptom free so far, my brachial plexus and skin mets are manageable so far, but my bone mets strike terror in my heart, especially on days when I wake up with an intense backache that may or may not be just due to growing older, or the time when I had a severe reaction to a med and had no control over my bowels for 8 days straight. My M.O. gets worried if I have a backache that lasts longer than a few days and I need to constantly worry if my spine is about to collapse. My bone mets might not kill me directly, but the thought of being paralyzed and having no control over my bowels until the rest of the cancer kills me, that is even worse to me. I pray that I die before it happens.

I concur with what everyone is saying. Each of us has our very own unique experience with MBC. We cannot decide for someone else how they will do or what they will experience. We can only control our own reactions to what happens. Even that is extremely difficult and takes practice and more practice and more practice.

My husband is a music fan and tells me often, Steve Goodman wrote a song that says it is easy to live with someone else's troubles. This is such a true statement and could apply to our current mets discussion. I noted in a different post that there are NO GOOD METS. Further, it is so extremely unfortunate each of us is here dealing with mets. At the same time, it is exceptionally fortunate we have found each other here to share, support, celebrate, comiserate, educate and all the wonderful things we do for each other here. All these wonderful things are independent of the labels and prognoses and predictions the Drs and tests have put on us.

We are here because we want to be here. Perhaps some of us, speaking for myself only, even need to be here for sanity and hope and something/someone to really connect on some level with every day.

Sending cyber-love to all today, V

[Christmas cactus' single flower bloomed this morning...another amazing work of Nature's art...]

Hello ladies! I was diagnosed 6 years ago. Stage 4 from the get go with a solitary liver met which melted away with Taxol, Carbo & Herceptin. 2014 brain met which we removed but have had a bone met on my femur since March 2015 that is not so eager to go.... I had RT, full hysterectomy (although I was only weakly ER+). Femara - which I stopped last Jan as I felt it was pointless. I also get Xgeva.

Last November my thigh (on the side of my met) started hurting me again...we did MRI and discovered the tumor on the femur had invaded the cortext and the soft tissue as well...wait what??? Soft tissue??? My oncologist has never seen this in 30 years of practice. We kind of ignored it as I was getting a rod in to strengthen my femur and avoid a fracture and we were starting Kadcyla as Herceptin alone was no longer an option. So we would watch this anomaly.

Fast forward to this week - no response with Kadcyla - in horrendous pain so we did a scan and the soft tissue mass is now 7.8cm!!! (3"). That explains the pain shooting up & down my leg. I am on Norco 24/7 and constipated like crazy. We will biopsy on May 9 and send the tissue to Foundation One for genetic mutations especially a specific Her2 mutation. In the meantime, my leg hurts so much!!! I am in tears right now. My kids are 10 & 7 and I want to keep fighting.

Has ANYONE had this happen? I am looking for a needle in the hay but I will put it out there...

Thank you V. I needed to hear that! All the best to you -

Nina- Thinking of you and hoping you can get some answers and painrelief!

Lulu- sending you good scan mojo to go with the pound cake

Lita- Amen! No mets are good mets.

Hoping folks are able to enjoy some sunshine and make good memories this weekend!

Lita57, so sorry to hear you are going through so much. I see that you had radiation to bone once, so I don't know if they can give you some more radiation treatments for pain. I agree, bone mets definitely affect the quality of life. Are you on any treatment now? Have you tried faslodex, femara or any other aromatase inhibitors? Are you a candidate for oral targeted therapy?

With so many newer treatments coming in, I do hope some thing works for you.

Take care.

S3K5.

S3K5, my spine has been radiated three separate sessions of ten zaps per session.

My MO says AIs won't work for me...my tumor load is WAY TOO HIGH. I have organ mets, muscle mets, bone mets everywhere , and 20+ brain mets which are all active. Systemic chemo is the way to go for now until we can get things under control....if that ever can happen, sigh.

L

Dear dear Lita, my goodness. That all sounds like just way too much. Thank you so much for being here with us. I think of you very often.

Lulubee,

I like the way you think. I’ll come to your tea party, especially if you make those yummy-sounding cakes!

My hip/thigh brace arrived a week early ).

It's just one of those cheapy ones that I ordered on line while I wait for the palliative care dr to set up my referral to an orthopedist. We all know how they can drag their feet, and I absolutely needed SOME support on the right side.

The brace is very light weight, and it fits under my clothes, but it's not a real tight, secure fit, which is okay for now. As I said, I just need something for the interim. At least I don't have to use my aluminum walker in the house - I can just use my cane again.

L

big peaches I hope u get some plan happening g very soon. I am also in limbo with low hemoglobin sleeping constantly freezing cold and exhausted and breathless . Just hope to get some answers diin

Leapfrog and all who are scanning, testing and starting new treatments/plans this week...best of luck to you!!! Thinking of you and hoping for good results for all!

thanks Lita57 x

Well, I was hoping to avoid chemo but that's not going to happen I had 3 nodes show up on my PET so I'm getting 4 rounds of Taxotere (ick), Herceptin and Projeta. After the 4 round of taxotere he said something about moving to a pill form? They are scheduling getting my port in soon, after the EEG to check heart function.

At least I have a plan in place, even if it sucks. Like my daughter said, "whatever works mom".

Maire, sorry about bronchitis and flu, but congrats on your stable status. Like the saying goes, "God only gives with one hand". Continue to heal.

BigPeaches, good to hear your doctor is taking this bull by the horns. I understand taxotere is quite doable and, more importantly, effective. Good luck, honey.

Delvzy, I hope you get answers and on a path to improvement soon.