Bone Mets Thread
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Mommallthetime - Oh I feel your very legitimate frustration! Unacceptable. I am so, so sorry. It may be time to have a good discussion with the Onc and I hope Dany has adequate pain meds. You and Dany are in my thoughts and prayers. Sending healing vibes and big hugs your way.
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Gaia, welcome! so very sorry that you have to find us and join, but we will do our best to comfort you and support you!
Deanna, I think you might need more amino acids to strengthen your bone marrow. You probably need a daily amount of 1.4 to 1.5 grams of protein per kilogram of body weight. I 'd assume your vegan diet has something to do with the rapid drop of the wbc count. Thinking of you.
Momall, so sorry that your daughter has symptoms and some progression. I think the doctor's lecturing was a cold act. I resent it! Very much hope the RO will come up with an effective treatment plan and together with the chemo to stabilize the condition.
Annie, love your cute cat.
3-16, wish you would not have any headache today!
Everyone else, Happy Thursday!
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Gaia, welcome! Great people here! Great tips, information and support
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Hey-I've also had a drop in my WBC's and I'm not vegan, so not sure it's the diet doing it to Deanna. It was recommended to me to take 12 capsules of turkey tail mushroom supplement to help, from a reputable company. I have not yet purchased this though.
I am in more and more pain. It continues to take me to dark places, and yes, I do think it's progression, and no, I am not getting another scan so soon. I am too scared and I don't want to face reality that possibly 3 treatments are not going to work against this monster in my body. I am feeling now I won't have much more time, which makes it all the more important to build up those memories for my children. I am definitely jealous of women who never had children, in a weird way. I feel so much guilt that I will be leaving them alone when they are so young. To be honest, once they are teenagers, I feel right now that they will be ok if I die. But can't this cancer just give me a break for a few years? Sorry to be such a downer.
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cjanet I am so sorry you are in so much pain and yes it always takes us to dark places. I just wanted to mention that when I was in the palbo/faslodex study and my WBC count dropped extremely low, my oncologist was very happy because he said that it means it's working! I think he was correct because towards the end of the study when I had progression my WBC count slowly went back to normal. He never tried to bring up my WBC counts and I was not allowed to even try anything. I would check with your oncologist before you take anything. Maybe you could speak with your oncologist about increasing or changing your pain medication? Feel better soon.
SusanAnn
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SusanAnn, that's a very interesting point. I've wondered why they don't automatically RX Neulasta or similar wbc building drug if they wanted us to rebound from Ibrance quicker. I'm going to ask my UCLA onc before I add any supplements, even though I'm a huge believer and have used a ton of them for years. But for now, THANK YOU for the positive thought about what these low counts mean!
momallthetime, I am so glad to see you posting. And I'm glad Danni was open to getting that second and third opinion. Evidently, neither of those oncs impressed her enough to switch though, in spite of what sounds like immensely frustrating communication/attitude from her current onc? My heart so goes out to you for what you're going through. You are both always in my thoughts and prayers.
Xavo, I agree with you about a vegan diet maybe not being in my overall best interest right now, so had already reluctantly added an occasional egg or bite or two of fish in the past few days. We'll see if it helps.
Cristina, I use a mushroom extract -- a blend of several mushrooms -- and agree a mushroom supplement is a good one to take for immunity. Pearlady/Dorothy was also thoughtful enough to repost her blood building regimen on the Ibrance 2015 thread today, in case you haven't seen it yet. But even though I already had zinc & astragalus on my shopping list based on my own research, after SusanAnn's comment above, I'm going to wait and see what my UCLA onc says about taking anything to address the low counts. And did you ever talk to a pain doc about your pain meds? (Sorry, I can't flip back to figure out where you are with that.)
Hydranne, thanks for the added info' on the whole enchilada diet! You are so fortunate to live in chili country, especially at this time of year.
gaia, not sure if I welcomed you earlier, but glad you found us, although I'm so sorry you have reason to be here.
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Thank you Deanna-
I didn't see where you posted about your diet... yes very new here ( unfortunately, but as my wise TCM Dr states: there are no accidents)
Food is my thing and healing with food (ya I know.... my devil mind goes to 'look where it got you')
So you or anyone here can hit me up with food and healing questions. I want to be of service.
I see my MO tomorrow to map out a plan..... TBC
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Gaia - welcome. As others have said, you will learn a lot here, and you can ask anything. I am fairly new here myself. I know how terrifying things can be, but they will get less scary with time.
Cristina - you don't have to apologize. We all feel down at times. This is the place where you are always able to talk. I hope you find out that your current treatments are working. I know it is difficult for you when you think about your children, but hold them tight and enjoy them.
Hello to everyone else, and I hope you enjoy a pain free evening.
Lynne
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Lynnwood and Deanna
i had my first and 'definitive' for stage IV scan on Tuesday 8/18 and I refused the 'drink' and yes they said it simply clarifies more but not necessary
and thanks for the hello 50sgirl. We are here together- all of us
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Deanna, would you mind sending me the name of your UCLA dentist? Maybe mine could confer and go from there.
Patty, how is your recovery?
Hope, are you getting pain relief?
Christina, I'm sorry you are in so much pain. We all go through our dark times, but remember that we all can voice our fears here. We all understand one another's pain and fears. You aren't alone.
Gaia, welcome. The ladies here have a lot of experience and tons of support.
To everyone else....you are all in my thoughts....as always....
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Welcome Gaia! (waving madly from across the ocean)
Leah
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I was dx with bone mets 3 months ago on my 5th anniversary of my original stage 2 dx.
I just returned from Dana Farber about an hour ago. The appointment was so-so. While Dr. Silver seemed much nicer than the Huntsman doctor, I can't say he offered much hope. It seems like hormone positive breast cancers are tricky in his book. He told me I now have a scabillion cancer cells in my body compared to when they originally took the tumor out 5 years ago and I had a mere billion cells. Okay, WTF? He said we just have to monitor and scan to see if the treatment is working and then hope it works for 2 years or 6 months and then try another until all the tools in the tool box are used up. He also told me to get a good psychologist to help me make the most of my time. It wasn't exactly the hope and support I was looking for. Feeling pretty blue. I asked if he had any long term survivors. He mentioned one ( just one!!??) who was ten years out. Wondering why I'm bothering. Ugh!!
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So, RO today was very sympathetic but cannot give definite answer for surgery or radiation till MRI will be done next wk sometime. Square zero! He says the Pet/Ct does not give an exact picture inside the spine.
Deanna thx sweetie, I missed you. I started taking something for anxiety, we'll see how it goes. Cheering so you could get stronger and feel better real soon. You pushed me so many times to rethink my MO
also i used what u said bt the TM's and told her we should use it as a baseline, she finally caved in and wouldn't you know, of course the #s are up! She feels more comfortable here, i always have one foot in one foot out. While i think no harm is being done i will work with the system. Cjanet it's beyond words the suffering of young mothers wondering about their children. It's the old adage: is it better to never have loved?? Not so sure. And about being a downer, NO you are real. You have a heart! We get it.
Rachel1- Onco mentioned something similar- well you know it's cancer of course it's gonna progress! I had ppl in my class i remembered passed all the tests with flying colors, but in life stuff i always wondered if they even knew where the dots were. I think the same it's true with all these Docs et all, yes they have degrees but Life University i am not sure they passed. Tx for my daughter was never long term, she was on everything! But we are always hoping for more and more tools. At least in these times there are possibilities!
Hydranne, thanks a bunch. Of course we gotta watch each other's backs. I feel also by going thru so many life issues with so many loved ones, that we always have to wonder if what they recommend is really so, or is it Insurance issues, Hospital bosses orders, Ego issues? What makes the doc think a certain way.
I have also been reading tons of books about the medical field in general, and it all comes down to - Watch out for yourself!
Xavo thanks for the support. LindaE54 thanks for the support.
Let's hope we all have a decent weekend!
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Gosh, Rachel, I'm so sorry the onc you saw @ DF wasn't more positive. I actually find that quite shocking considering DF's reputation, since such a matter of fact attitude sprinkled with worrisome images like a scabillion cancer cells or an empty tool box, can't in anyway help patient morale (and the mind-body connection) or outcome. Very strange. I wonder if he was just having a bad day?!
momallthetime, keep us posted on the MRI. And glad the RO appointment went well. My onc recently said if my pain level doesn't improve with my new meds, she will do an MRI to assess further options. Your comment about seeing inside the spine explains it.
Lindalou, let me know if the contact info' I PM'd you turns out to be any help. I hope it will!
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Hello, dear and wonderful ladies, I found this thread many days ago but haven't had the courage to write. Until now. Have been feeling quite alone in the universe. I'm having a CAT Scan and Nuclear Bone Scan at 10 am, and am so apprehensive that I haven't been able to sleep. I will write more next time, but for now...
Dear Rachel, I am trembling, having just read about your Dr. Silver experience. Mine, with him, was identical! He told me to put my affairs in order, and begin "making arrangements." He told me I had 22 to 36 months, "certainly not five years." I asked him the same question you did--did he have any long-term survivors, and he cited just one, the same "ten years out" patient. He painted such an extraordinarily bleak outlook for me that everything inside of me died. It was a long while before I could snap out of a feeling of hopelessness, and after waiting way too long, I just began Arimidex 3 days ago. I will soon begin Xgeva as well. My local oncologist is positive and encouraging, tells me of other patients (very plural) whom she has been treating for years and who are living good lives, and she has helped to alleviate a lot of the damage my Dr. Silver appointment engendered.
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Dear Kendrasue, I can't believe you had the same experience with Dr. silver! I am so glad you wrote because I have been in a deep depression and really thought I should just give up. His words have been reverberating in my mind and his calm, passive, matter-of-fact manner made it all seem so bleak. You are so fortunate to have found another doctor who is so encouraging. What a difference that makes. Maybe you can share who your new doctor is. Scans are the worst. I become unglued with lab tests as well. If you are just starting medication it sounds like they are doing a baseline? I will keep you lifted in light and prayer that all goes well. Xo Rachel
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Momallthetime, thanks for updating us on what is happening with Dani, I can only imagine how stressful this is for you. I wish there was something I could do and I feel frustrated reading what you are all going through. I am praying for her and hopefully the MRI will give you some much needed answers. Sending you healing hugs.
Cristina, I hate hearing you are in pain and that it is bringing you to dark places. You are not a downer, this stuff is hard. I have days I'm in so much pain I just cry and cry and can't snap out of it and my mind goes to places I don't like. I can only imagine how hard it is for you with young children. When I was diagnosed with MS the girls were 5 and 7 and I imagined myself in a wheelchair not being able to take care of them. My neurologist painted a grim picture for me based on my symptoms and relapses at that time. But it didn't happen, and it just shows they never really know. I'm sending you big hugs and all my positive mojo that your pain is regression and not progression.
Rachel, welcome and sorry you have reason to be here. Wow what your onc said is harsh, I never liked my first onc, he was arrogant and pushy and made a few mistakes with me I would not let go but even with all of that he never made me feel like my situation was hopeless. He said people are living longer and longer with MBC and that there is always hope.
Kendrasue, best of luck on your CT scan and bone scan, will be sending positive thoughts your way. Thank God your local onc is positive and encouraging. Dr. Silver is not helping his patients by making them feel like their situation is hopeless. Please let us know how you make out.
Dune, pleasd check in if you can, we're missing you.
Deanna, Linda, Lindalou, Lynnwood, Amy, Xavo, 50sgirl, Hydranne, gaia0132, SusanAnn, 3-16-2011, MusicLover and everyone else here, sorry can't remember beyond this page, hello and wishing you all a great day!
Hugs to all, Annie
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Good Morning all
Kendrasue and Rachel, I am so dismayed to hear that you had such a cold experience. I am VERY new here in ALL ways, just dx in June and just found out this week multiple mets to bones. Meeting with MO today and sort of freaking out after hearing the news you were both served up.
I wonder if other ladies here could speak to what I might expect next as I do see that many mention bone biopsies.... that in and of itself terrifies me and I also can't wrap my thoughts around having multiple sites.....
Yesterday i was feeling so good and positive, I must admit feeling very sad and angry to hear the news you both received. Very scared at the moment.
thanks for listening
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Gaia -I had a bone biopsy and it was a walk in the park. However, they are notorious for giving false information. At my original dx I was hormone positive. My biopsy didn't show hormone receptors, but the onc's don't trust that result because the process of desolving bone to look at the sample can effect the sample. Does that make sense? My onc is treating me as hormone positive until blood work/scans show otherwise.
I pray your appt. goes well and you have a supportive doctor!
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Hi rachel
yes I heard they can give false info. what bone did they biopsy if I may ask? do you have multiple mets? I've gone from 0 to360 in less than two months, just want to have something to hold on to.
Thanks
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Kendrasue and Rachael, my heart sank when I read about that cold hearted doctor. My onc has been nothing but positive and optimistic that while we can't cure this, we can knock it back for a long time. She said there are multiple treatments that we can use. Gaia, I also have multiple bone mets, spine, sacrum, ribs, femurs, humerous, and skull. I was freaking out until my onc explained that it doesn't matter if you have one bone met or multiple, if the treatment works, it will work on all areas, not just a couple. I did have a bone biopsy, to check if the cancer cells in my bones are still ER/PR positive like my original Cancer, and they were. The bone biopsy was not bad at all, not even close to how bad I thought it would be. Hope this helps in some small way
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Thank you for your reply Lynnwood, that is helpful
Seems you were just diagnosed too. are you just doing the Ibrance? Did they suggest radiation?
I think I will be doing herceptin and possibly femara but I want to inquire about tamoxifen.....
ugh I haven't even taken an atibiotic in over 30 years, this all feels so GROSS
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They biopsies the bone in my right hip. I do have multiple mets. Both hips, lower back, ribs. They discovered this in May at my 6 month appointment. My alk phos was high, then a scan confirmed. My head is still reeling. I do have a hairline fracture as well In The pelvis from the cancer. I am on faslodex, Zometa and I had radiation.
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Thanks Rachel
I am so sorry all this is happening and unfortunately I am in a very similar place. Thank you for sharing as I know this is a tough road.
I meet with MO today to get a full picture, but from what he told me on the phone Tuesday it is in hips, sacrum, T8, left clavicle, sternum..... ugh and the real kicker is that except for periodic pain in my left hip and tightness in my chest which I believe is mainly from my mastectomy healing, I feel and look completely great- It's INCOMPREHENSIBLE!!!!!
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Gaia, originally diagnosed in 2008, mets diagnosed in April. I am taking Ibrance, Femara, and Xgeva. My tumor markers have dropped from 203 to 64 since beginning treatment. My onc never mentioned radiation, I assume because it is so widespread.
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Good morning ladies. I'm doing better with pain. I think we have the dose of MSContin right finally and I like that I only take it 2x per day. Still taking Percocet for break thru, but not as much. Yesterday was a tough day. More weakness and a lot of nausea. Even vomiting. Waiting to see how it goes today. If I have more vomiting, I think I will give my MO a call. Not sure what this is all about
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Romansma, I hope you're feeling better soon.
Gaia, I know what you mean about "incomprehensible". I have bone mets all over - skull, C spine, T spine, L spine, sacrum, all through my pelvis, and some ribs thrown in for good measure. And no pain. Sometimes at night one hip is sore so an ibuprofen takes care of it. I also have no symptoms from my liver mets.
Weird. Just weird.
Leah
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I also just want to say I am so sorry for everyone who is in pain as I am fully aware that that could and may very well be me at some undetermined point either near or far. I in no way take lightly that I am currently feeling ok..... I know there is a road ahead.
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Hope, good to hear from you! Sounds like you are on the right track with MSContin. Let us know how you are doing with the nausea etc.
Gaia, Often the RO/MO waits for radiation until you have pain. Glad that you are not having much now. Hope your appt today goes well.
Deanna, I am emailing the doctor today. I will update you soon. Thanks.
I will check back in a few days. Going to Chicago to have some time away while I can still travel. To everyone, wishing all a good weekend. I think a top rated restaurant in the windy city is a must don't you?
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Christina, so very sorry to learn that your pain is still intense which made you wonder the future with the dark thoughts. We all have the moment particularly when we were in pain. Hope today you can manage your pain better and thus feel better. I think you and Deanna both just started a similar new treatment, probably it is too early to tell if the treatment is working or not, right? I was told by the doctors that usually it takes 3 months for a hormone therapy to kick in. Hang in there, focus on managing the pains, and try not to suffer from the dark thoughts since they would not help with anything in reality. Hope you have a brighter day today!
Kendrasue and Rachael, no doctor could exactly know how long one particular patient can live. Their prognosis are often wrong. You can find so many cases everywhere cross the boards here in which the patients have outlived their doctors' prognosis. It's not that the doctors are particularly cold. It's their professional training that requires them to use scientifically calculated statics to back their prognosis. But the statics always have the problem to predict any individual's destiny. They can only say from that year to this year, this many patients were diagnosed with MBC, and this many patients have died. They can never differentiate if you have this particular gene, what would happen to you. There are too many "if"s to use statistics to predict. I never asked any doctor for prognosis. I do not want to be tested psychologically with a mere assumption. So, just ignore your doctors'prognosis and focus on your treatments. If you are ER/PR positive and if your mets so far is bone only, I am sure you will outlive the prognosis you received.
Lynn, like what your onc told you how to view the condition. My local onc might not talk much but he is very encouraging and confident. I appreciate that very much.
Deanna, wish you big success in finding a way to keep your WBC in the normal range.
Annie, continue to be beautiful.
Momall, wish you a good day in stabilizing your daughter's condition.
Gaia, have a successful meeting with your onc and to have a treatment plan in place.
Everyone else, thinking all of you and have a nice day.
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