Bone Mets Thread
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Thanks gals, I'm reading the other thread.
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Also, my NP said that the trials used 'de novo" ladies - meaning that it was their first experience with Stage 4 breast cancer treatment, so all the side effects might have seemed truly awful to them, as they hadn't any experience with treatment. If you've done Xeloda and Navelbine, Ibrance will seem fairly easy.
Unless you have the very rare big time side effects, but that is unusual. I'm entering my fourth cycle with Femara/Ibrance, and it has been fairly easy. I get fatigued in the third week, but still get everything done. Mostly
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Deanna, I got accepted into the facebook group! Thanks so much for the link! Lovesmaltese, maybe I'll see you over there!
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Hello all:
A question about exercising...I am seven weeks post final Taxotere and feeling moderately good, apart from how stiff I am, likely in part due to Tamoxifen and Xgeva. But also partly due to my many mets. I am eager to start exercising, including some very low weight weights.
Do you think I need to consult someone before I start? Should I start with physical therapy first before doing something more traditional?
Thanks for any guidance.
Rachel
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Rachael, my onc referred me to the Live Strong program sponsored by the YMCA. Specially designed for Cancer patients and totally free! We went twice a week for 12 weeks and during this time you can also use the facility as much as you want for free. They evaluated our strength at the beginning and the end. We did cardio, boxing, rowing, tai chi, water exercise, track, weight, etc. I finished just before Christmas. My local cancer center also offers free yoga for cancer patients twice a week. I don't get to go often because of my work schedule but do try to do some of the stretches every day. My onc is big on moving and exercising.
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Rachel- I would def get an opinion on what is safe for you to do. I talked to MO about this as well and she said I have to be careful with it. She suggested light Yoga. Stretching first would maybe be a start. Good luck!!
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Lynwood- Wow FB Ibrance page has lots of information with lots of opinions. I am so happy we were accepted to the group! I am going to wait for my next MO appt before I post. That is the end of next week when I will get a bone scan. I am 1 week into cycle 4 and I learned on the FB page that I am not the only one that feels lousy on the week off. Always something new to learn
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Loves, I have been reading the page on my day off today and can already tell that they have some great information. I have also noticed that I feel worse on my week off! I thought it was just me but many on there also mentioned it!
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Thanks to Deanna for letting us know about it
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Terre- your Fair sounded wonderful, love the pic
Babs- it is not cheating, getting 2nd opinion in our conditions is very important. I am on 4th MO for various reasons, & truly believe if I had stuck w/my 1st one my surgeon recommended, I would be dead by now. My 1st RO was rude & a general A hole , the RO I have now has been w/ me 6 yrs & he is the reason I am still alive . He suggested I go to MD Anderson for 2nd opinion after MO #1 screwed up. I wished I had gone there initially. I even had to change plastic surgeons when expansion was done he didn't think he could do implants, said my skin was ruined from radiation, he said I might find a younger plastic surgeon who could do it, I don't think he thought I would get another opinion, but my mom worked for surgeons in another close by town & recommended this very handsome, much younger Harvard & Uni of Miami trained guy who did an amazing job & used cadaver skin.
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purple girl from Ga--I am surprised Zometta made u feel bad. My 1st dose gave me some stomach cramps after trying to eat dinner, but after that I haven't had any problems w/it. They r running it in over 15 min I hope. I usually request an extra liter of fluids because I am usually on the dry side
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Sharing some good news. My tumor markers after 6 Taxotere (and HP) were 39 and 41. I am 8 weeks post final tax and 30 days on Tamoxifen and my markers are 19 and 22! I've been agonizing over every ache thinking it could be progression. Hoping maybe now I can relax a little--at least until next week's echo.
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Rachel-that's great news!!!!!!!! Hope your echo goes well too!
Babs
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Rachel, Wow, that is great news on your TMs! Time for a happy dance. Woohoo! I hope your echo results are just as good.
Terre, Thank you for the link. The article is quite interesting. Those cancer cells seem to be "intelligent". It is amazing to me that the researchers could track 3D images of the cells in real time.
Good morning, everyone.
Lynne
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Rachel I just loved reading your post!! The cancer cells are allergic to great attitudes!! I need to catch some of that attitude!!
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Rachel that's great news makes my day. Doing a happy dance for you and wishing you luck for the next hurdle.
Terre very interesting article and very scary. Always good to know your enemy kind of freaked me out with the correlation with building a baby. These cells will be hard to outsmart. Did not realize they suck in healthy cells I wanted to think the whole tumour is evil. Well knowledge is power the more we know the quicker we can bring down.
So another wet day in Vancouver January showers bring February flowers I keep telling myself....
Take care all and have a great day.🌸🌻💐
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Wow, Terre, that's really something about the intelligence of cancer cells! Let's just hope and pray that kind of discovery leads to future innovations that make a difference.
Rachel, WooHoo on your TMs!!! I'm sure your echo will be good too!
Sue, I couldn't agree more with you on the importance of second opinions, as well as the fact that not all docs, including PSs, have equal abilities. It frustrates me no end after what I went through initially with local breast cancer "experts." As I often say, anyone can hang a Breast Clinic sign on a building, but that doesn't make them experts, especially if they also spent time doing surgery or oncology for a variety of other cancers. True specialization -- docs who dedicate their careers and lives to researching and dealing with bc -- can often make a difference in patient outcomes, as does patient participation.
I spent yesterday working in my antique spaces, including totally re-hab'ing one of them. Always a bit achy the day after, but it was worth it. Will catch up on anything I missed here and comment later.
Hope everyone is having a good week! Deanna
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Hi All!
I've been keeping up with the thread, reading everyday, but no time to post. I finished my 3 part interview yesterday with the researcher doing a doctoral thesis on "Living Well with MBC" The paper won't be published for about a year, but she does presentations at Cancer Symposiums for both professionals & the public, so we are getting the word out there. She is working hard to dispel a lot of the myths out there surrounding breast cancer & especially MBC.
In our three very long interviews we've developed a bit of a personal connection & yesterday I was telling her about my troubles with headaches & smoke smells & she convinced me to have an MRI even though I'm terrified of closed spaces. I guess I'll take lots & lots of drugs! LOL! She was having similar issues & it was discovered that she has some weird tumors that they are unsure of exactly what they are. But the Dr's initially thought she had brain mets due to MBC, wouldn't that be irony for you?!!
My onc appt blindsided me yet again, even though I had gotten my bone scan results & TM's, but ending up with the brain scan, I am finally starting to feel like myself again & back on the pamidronate roller coaster for Friday.
All of you are in my thoughts, I hope that we all have a good day with little pain, Cheers, Dee
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Hi ladies,
I simply cannot keep up w this thread while working, it's too much for me! My MRI showed stable disease but I have been having consistent headaches which wake me up at 4 am every morning, and I take ibuprofen and go back to sleep. My onc will get a brain MRI in the next week or so. I'm in no rush. I'm still working full time but I'm zoned out on pain meds many days so I don't think I'm doing the best job. Just hanging onto my job since my husband is unemployed and doesn't seem to be getting a job anytime soon.
Dee, I'm going to be joining you on that brain MRI, wishing us both luck on it.
Hugs and love to everyone else, I just can't remember it all....
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Rachel - great news!
Dee - wowsa..you're a busy lady! Hoping for good news for you with the scan...
Cristina - good luck with your scan too.
Deanna - Redoing your space would make you sore! Hope today's not too achy.
Purplegirl - Zometa knocked me on my butt too..was really sick for several days. It affects everyone differently.
The research article is interesting. The fact that the cancer cells zoom around faster may be something they can use to target them? A bit creepy and scary, but hopefully will get us that much closer to a cure.
Hugs to all,
Terre
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I'm due for my 3rd Zometa infusion on Monday, and I have no idea what to expect.
I was warned before the first infusion that I may experience 'flu-like symptoms". I was fine that day, but the next day I was hit with the worst "flu" I've ever experienced. Every square inch of me ached - headache, bones, joints, muscles, skin - I took some codeine and stayed in bed. It only lasted 12 hours, and then I was fine.
I had read on bco that maybe slowing down the infusion would prevent the side effects, so I asked for the second one to go in over 30 minutes instead of 15. That evening, I got hit much worse with the "flu-like", but this time I threw a fever of 102! I took some paracetamol, and eventually the fever broke, but a few hours later I was freezing. I was too cold to get out of bed to grab my thermometer, so I have no idea what my temp was. I had the violent shakes and teeth chattering - I could have sworn I was hypothermic. It took a full 24 hours for my temp to come right.
I am not looking forward to Monday or Tuesday. I'll make sure I am well hydrated before, during and after, but not sure if that will make any difference.
I'll let you know what happens.
Sue.
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suems, I would suggest you tell your MO this and describe in detail what you went through. He/she needs to know this and may recommend a different drug for you. It sounds like your reaction was pretty tough.
I got a call from my former principal that her LD teacher up and quit! So...I'm on board to teach and assess the junior high students for the rest of the week...I'll catch up this weekend.
Best to all of you.
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Sue I'm sorry you had bad experience with the Zometa I wish more ppl were like me I've taking it for 3 years and no se. I just wanted to add that I've read that in addition to slowing the infusion and drinking lots of fluids some ppl also take some Claritin before during and after the infusion and it helps with the aches. Praying for your body to adjust and not give you any more trouble.
Aurora
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Suems - I read on this thread a while back that if you take a Claritin (or generic form..Loraclear?) the day before, the morning of, and the day after, it helps. Worth a try perhaps?
Have fun teaching and evaluating, Lindalou!
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cristina. Good luck on brain MRI
Hugs all around
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Thanks Terre and Aurora,
An interesting theory about Claritin. I wasn't on an antihistamine during the first infusion, but by the second I was on Zetop / Cetirizine, which sounds very similar.
I was put on it to see if my persistent (since August) dry cough may be allergy related. I don't believe is was, but since I live on a lifestyle block surrounded by haymakers, I stayed on them until last week, when the rain put paid to the flying pollen. My cough seemed to go away by itself, so I have no idea what it was. The chest x-ray I had saw no lung issues (but on the other hand, it also missed the rib tumour!)
I do have some Loratadine left over from last years hay season, so I will take some of that on Sunday, Monday and Tuesday and see if it makes any difference.
I'll let you know what happens.
Sue.
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hey sue. Sounds smart to start the loratin and see what happens
Hope all are enjoying time right now ! The present of course!
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Hi ladies - recently diagnosed with bone mets to sternum and lower spine plus a small nodule in left lung. Any tips for pain management while at work? I need my job, but don't like the chest pain which seems to worsen at night. I hope the Ibrance is blowing up some of the sternum mets. Pain free wishes to all!
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lalady, welcome to the group, sorry you have to be here. I have no advice for the lung nodule, but for bone pain, I find that a tylenol & an ibuprofen work good. This was suggested to me by my MO when narcotic drugs weren't working (strange, I know)
Wishing everyone a painfree night, cheers, Dee
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