Bone Mets Thread

Thanks for the input. Yes, I'm on Xgeva. My ca 27-29 isn't real reliable, but even so, has consistently crept up over the past 6 months. Pet and MRI are both showing new areas. Doesn't point to healing at all

Meegan and Aurora, I don't have much to offer besides a welcome. I'm glad you have that fighting spirit. I'm starting to get the message that I better do some better fighting myself.

Caryn, you are too funny! Actually I did not eat one, but I'm not guaranteeing they all arrive at the oncologist's office uneaten. Oh man, they really are good. My mother showed me how they were all piled up on the Christmas plate and said they would have to go like that because they didn't all fit. My mind says "yeah, and wouldn't eating them be a good way of addressing the problem" but I didn't say anything. I just looked at them lovingly. LOL

Hello everyone,

Wow so much to catch up on, it's been a crazy couple days. These treatments are catching up with me, feeling dizzy, nauseous and have a bad headache today. 3 down and 7 to go and I'm feeling drained. I hope this settles down soon. On a good note my pain hasn't been too bad.

Romansma, praying for some positive news for you, I imagine you're stressing over the recent report but I'm hoping things take a turn in the right direction for you real soon.

Dunesleeper,  best of luck at your appointment,  thinking of you and sending positive thoughts! 

Aurora and ReadingMama,  praying for success in your treatment plans.

Thanks to everyone for your encouragement during my radiation. I just can't believe how tired I am, feeling discouraged, I thought I'd get through the first week without a hitch.  Looking forward to a weekend of rest

Hugs to all, Annie

Annie, I'm so sorry about the headache, but it sounds like your radiation must really be doing a number on those bc cells!

Romansma, did you ever go for a second opinion, or do you think that might be worth doing?

Dune, hope the onc appt went well and you got good news on your tumor markers. I had to laugh about not giving the muffins to Shirley, but I'll also be interested to hear what your onc says about her staff driving patients away.

Meegan (ReadingMama), welcome!

Auroaya, glad you stopped lurking and joined the conversation! I've had insurance (Cigna) refuse to authorize PET Scans, and my oncs both say it's getting harder and harder to get PETs authorized because many insurance companies feel CTs are sufficient imaging, particularly after mets have already been dx'd with a CT. They feel that a PET won't really add any information of value at that point. I'll be interested to know if your onc has any success in getting the PET, but I finally gave up on worrying about it and just decided to concentrate my energies on healing.

Hugs all around! Deanna

Nice picture dunes you look so cozy and relaxed I'm glad it went well for you, me not so well, tumor markers up and possible treatment switch, doc will try to fight with Medicaid for a PET scan as CT scan did not show anything but healing. Hope you have a nice nap.

Aurora

Just saw what looks like some very promising research news on another thread here and thought I would repost it in case you haven't yet seen it...

http://www.medicalnewstoday.com/articles/286223.php

According to this, in a small trial, it was helpful for metastatic bc patients. And I didn't see the usual disclaimer new research usually has about it taking another 5 or 10 years to actually get to market.

Aurora it's good the CT showed signs of healing. That's great even. I hope you get your PET scan.

Thanks for all the welcomes.  Good news from my PET scan yesterday.  Onc left message that I am responding very well to chemo and that the tumors are shrinking!  I did not call her today as I was at work, but will try her tomorrow.  Will be interested in reading the report and seeing the scans, but am very excited!

A little about me.  I'm 47 and have a dd 14 and a ds 11.  My personal goal is 8 years.  That would let me see my daughter graduate college and my son graduate high school.  I don't dare dream about weddings and grandkids.  But I do dream that during those 8 years, there are wonderful new drugs invented that will allow all of us to keep making more goals and more milestones!

I also wonder how often you have your tumor markers taken?  I read someone had theirs every 2 weeks, that seems very frequent though.  I only had mine in Sept when first dx with mets and then again in Nov.  I'm on schedule now to see my onc every 6 weeks.  I didn't ask her this question last time, so I don't know her plan.

And even though I am happy with my onc, I am finding a second opinion doctor.  We actually had a good discussion about it and she gave me some names.  I will do some research, I don't have a pressing need, but would like to establish a relationship with another doctor now. 

 Love and Healing thoughts,

Meegan

Hope everyone is having a nice evening! Thank you for all the ideas, input, and nice thoughts. I met with my MO and RO today and they were going to talk but the consensus seems to be that I need to start chemo right away. I may do some rads also, if my marrow cooperates. I'm resigning that this is what needs to happen. No sense it being in a sour mood much longer. Oh, and yes, I've been thinking about a second opinion and today both of my doctors thought it would be a good idea at this point. I never brought it up

hello ladies. How long have you been going strong without progression on Femara

Smellimd82: Femera lasted me 4years. Now on Aromasin & Affinitor.

Terri

Romansma, progression sucks. I hope your next treatment will stop the progression train. A friend of mine had extensive bone mets at diagnosis (age 45), had chemo and lived another 11 years. That may not sound like much but it's more likely we'll see better, gentler treatments the longer we hang on. I'm dreaming like you, Meegan.   Dune, you look very relaxed indeed.  Aurora, hope you get approved for a PET. It would seem the logical thing to do.

Hi Momomnan - I did have increased joint pain/ache (especially in the hips) a few days after my first Xgeva shot, but it could have been from the Taxotere too. The pain seems to be less noticeable with subsequent shots. My doctor checked with my dentist before I started Xgeva because of the slight risk of ONJ. I also started taking calcium supplements. One week I kept forgetting to take them they almost couldn't give me the Xgeva shot because my bloodwork showed low Calcium. Since then I have been very good about remembering!

I'm happy to say that the pain I had from compression fractures before I started treatment is almost completely gone now...thanks to radiation, chemo, H&P and Xgeva.

Hi. What's the longest length of time that any of you have been on Xgeva?

Patty, if you want to ramble, you ramble! None of us are promised tomorrow, but we are all more aware of that fact. Personally, I'm pretty chill with that most days. There are OTHER days though.