Bone Mets Thread
Comments
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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
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Welcome Aurora and Reading Mama. I stop by every day or so to catch up with the goings on.
Hey Duneskeeper... hope your onc visit went all right. It sounds like it could be uncomfortable - though muffins can make a lot of stuff better! 😊
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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
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dune sleeper the muffins sound delicious.
Romansma - dang. The report doesn't sound good. Have you been having pain in the new areas ? So hoping its healing not progression. When do you see mo again ? The good news is that there are a lot more tx out there to try. Praying for you and your family. Hoping you not only get to take your trip but actually get to enjoy it. You always have hope, right ?
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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
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Hi everyone. Have not posted for quite a while. The Xeloda quit working this spring after 2 1/2 years. So had more radiation on lower spine and was put on a hormone blocker. Hormone blocker threw body into total turmoil and have had severe stomach issues since. Had progression on the hips and pelvic bones and more radiation at the beginning of November. Now doing chemo - Vinorelbine through port 2 weeks on and one week off. Sure hope I get some positive results.
I love all the advice and information that is being posted. Who knows better all the side effects and what does or doesn't work than the ones actually going through it. Love and hugs to all of you - Let's keep up the fight girls!!
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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
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Annie I'm glad you get breaks on the weekends. It's a grueling schedule. You must acknowledge the toll all this takes on people. You just keep up the good work and make sure to really rest this weekend.
My oncologist was most unhappy to hear another bad report about Shirley. Apparently she has been spoken to about this several times. Unfortunately, they are short-staffed. Also, my oncologist is on a diet (has lost 30 pounds), so she says she will only have a small taste. I bet she needs more than a small taste after she gets that small taste. She gave me prescriptions and we set up appointments as if I would still be seeing her, but she understands that this other place is much closer to me. She says she knows the doctor I'll be seeing and likes her. That's cool.
I was very anxious so I took a xanax. My bp was very good when I got there. After my appointment with her I got my Xgeva shot. We came home and ate a salad. Then I went for emissions testing. Passed. When I got home I suddenly felt very sleepy, so I am in bed.
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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
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Welcome Aurora and Reading Mama and Saskie. I don't have much advice, but I do remember reading about someone with mets in every vertebrae and still doing well. It is scarey to have the spine affected; I do baby my back.
Dune - glad the appointment went well, your emissions check was good, and your markers are down!
Annie - radiation is a bugger and will wipe you out in a big way. I got the nausea, headaches, etc., but they decreased with time. Of course, my radiation wasn't as aggressive as yours. I likened the tiredness to trying to run through waist-deep mud - just slow motion, tired to the bones. But the tiredness does go away after the radiation stops. It just takes a while.
Romansma - as they say here in New Zealand - bugger. Double bugger even. I'm so sorry you're seeing progression. Sending good thoughts and hugs your way; hope they find something to get you back to stable soon.
Hugs to all,
Terre
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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.
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That is good news dlb. I looked into the next phase of the trial, and it appears they are excluding Stage IV from the trial.
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Aurora it's good the CT showed signs of healing. That's great even. I hope you get your PET scan.
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dune - nice pic indeed
Aurora - sorry about progression. Hoping the next tx works better
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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
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Great news Meegan! News like that certainly makes us smile.
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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
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Shutterbug 7, I returned from a routine check with my onc and tx today. I have possible bone mets to the c spine and hips....still imaging. My treatments for my lung mets....Herceptin and Faslodex will continue. I noticed that you were started on Xgeva a few months ago my oncologist wants me to start on this med. In fact started on Xgeva today. What can I expect possibly...side effects? How have you been in tolerating any side effects...I would really appreciate any feedback re this. Hope that all is going smoothly for you. Pe
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hello ladies. How long have you been going strong without progression on Femara
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Hi Momomnan6,I was treated with denosumab/Xgeva at my last 2 monthly mo visits. Se's were very minimal for me. A little upset stomach and maybe a slight increase in back pain day of or/and day after. Otherwise nothing! Hope it is the same for you.
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Smellimd82: Femera lasted me 4years. Now on Aromasin & Affinitor.
Terri
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I've been on Femara for almost 2 years and I know there are others who are between 3 and 5 years with no progression.
Romansma - I am so sorry you're having to face this. Absolutely sucks. Hope it stops this stuff in its tracks and gives you many more progression free years on the other side.
Momomnan6 - good luck with the new treatment.
Hugs to all,
Terre
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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.
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Pe, I have absolutely zero side effects from Xgeva. So far anyway. My best wishes for you, as with all the other gals here. Wonderful people each and every one.
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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.
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reading mama. Yay ! Tumors are shrinking. That is fantastic !!!! I so hear you in the 8 year goal.
I am hoping for 9. Too get both of my ds's out of high school also. I am not sure of that makes me a pessimist or not. Should I have a 20 year goal instead. My mom lived 20 years after stage iv and meds sure have improved since then Realistically should I have a 2 year plan. Ugh. Guess it depends in what kind of day I am having. My mo of 10 years told me 1 1/2years ago (after I pushed him to ) statistically 2-3 years but blah blah I never heard the rest My brain hung on 2-3 years. I am 1 q/2 years out with no progression but still in the back of my brain late at night I know progression can come at any time and I may not even see my ds's finish this school year. Damn cancer. Damn loss of control. Ok so obviously I am having a negative day, so I'll quit rambling.
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Hi. What's the longest length of time that any of you have been on Xgeva?0 -
Thank you all for your feedback. Seems like there have been many women who have done well on Femara and the likes (Faslodex, Arimidex, etc) when combined with a Biophosphanate like Zometa or monoclonal antibody like XGEVA. I came across a two ladies ona Facebook support page today who have been going strong on Femara..one has been stable on Femara and Zometa alone for 12.5 years! She's doing very well and exceeding all of her doctor's expectations.Terri: when you say Femara worked for four years, did you start to see progression after the 4th year leading you to the switch? Was the progression limited to the bones (new mets or growth of existing mets)
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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.
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Thanks ladies, for all your answers to my post re Exgeva.....very helpful .......you all are wonderful! Peg
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