Bone Mets Thread
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I know Dee I asked about that study as well and got the run around. Thank you I'm imagining it to be very painful. So thank you that helps my mind a bit. I think I will do it. I have been thinking a lot about all this. Why my breast tumour shrank and everything else was busy growing.... Could it be the CBD pills? Idk since they are harmless I decided to up my daily dose by 100% so ten pills a day. I have been doing it for four days now all my pain is gone. I was scheduelled for radiation next week I will phone and let them know it's not needed at this time ( better save it for when I really need it). Doing the trial though I guess it's Canada's way of getting Faslodex into the country.
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Hi DecisionFreak
Letroloze seems to be a good option
I don't know if you saw the link I posted yesterday
http://www.ncbi.nlm.nih.gov/pubmed/22068814
Not for metastatic cancer but the article says how good the response of elderly people is to letrozole (Best AI option). I presume that eliminating hormones will Letrozole have the same effect on MBC
Keep Pushing!!!
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Wendy, Is it possible that your bone mets showing progression aren't really progression at all, but healing? Mine were like that & Amy and Linda assured me that they had done a scan too early & sure enough they were right, bone healing looks very much the same as progression, so waiting a couple of weeks for a bone scan is good.
Also, the POG program isn't a trial, you should ask about it. The provincial gov't just gave them some more $$ to take on more patients. I'm going to keep asking to be put on it until they get sick of me. It's a genome program where they take each patients DNA & find out what treatment would work best for their specific cancer.
I'll BBL as the sun came out here & I want to head back out to the garden til the weather changes again. Cheers, Dee
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Yes Dee that's the one I asked about back in October keep bugging them the science behind it sounds very good. My oncologist didn't think I would be good for it. At that point though she thought she could cure me too. Take everything with a grain of salt now. No they went by my old bone scan from last summer to the new one I just had and there is progression. Bummer.... Enjoy the sun while it lasts. I used to do that in the Okanagan when I had a yard. Love gardening I always caught myself smiling while I was at it.
Patty how are you? Are you home now? I'm thinking of you and hoping you get home soon.
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Wendy, Before you cancel your radiation, be sure to discuss this with your MO or RO. Yes, radiation can help with pain but your mets may require some radiation to keep them at bay. Just something to think about. Where are you supposed to have the radiation? Sorry I forgot and can't go back. I had a bone biopsy in my spine. Felt mostly pressure.
Mary, Thinking of you and your family. You are in a tough spot right now. Sending you hugs.
Terre, The hotel looks wonderful. 2 times in a row, you are indeed lucky at drawings!
Amy, Yes, crazy weather for MN and WI the past few days and hours. I went out for a walk with some sunshine and then got pelted with sleet and snow halfway through my walk.
Dee, garden for me ok? Dirt Therapy is the best!
Wishing all a good week ahead with less pain, and more joy.
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Hi All
Back from visiting my folks in Florida.
Dee- hoping you bounce back soon from your fluish symptoms
DF and Maria- you are both such an asset to your Moms-Maria, I'm glad your Mom is doing better.
Terre- 2 wins in a row-time to play a big lottery!!!
Patty I hope they figure out why you're having the heart rate issues soon-it's time to leave that hospital!
Lynne- hope your DH gets better and better
Rachel- So very happy for your good results and that you celebrated! How did you like Book of Mormon-we loved it when we saw it.
Wendy & Dee-I don't understand Drs who are not responsive to their patients and take so long to get their patient test results. I've managed medical practices for the past 10 years and even in the office where I had 12 doctors, none of them acted like that!
Chelle- so happy life is moving along for you. It's important for all of us to try to live as normal a life as possible.
Amy-glad you're out of the hospital.
Deanna-that was so scary about your dog. I would have probably frozen-so horrible! But thank god he's ok.
What does it mean that a met is sclerotic? My recent scan said that and I was going to ask my MO on Thursday.
While in Fla I was scolded by my step mom because I haven't called my step sister in a while. I couldn't tell her why. And, I would never tell my step sister what's going on because she has verbal diarrhea and I need to protect my parents. My sister and my step brother know and I trust them implicitly to keep my confidence. I do have a feeling that my step mom senses something but I think she's not asking because she doesn't want to know-because then she'd have to tell my Dad.
Hope you all had a good weekend,
Babs
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Dee, what's with the long waits to get callbacks from oncs on Canada? Are they that much busier than oncs in the US? It just seems like they should have more of an appreciation for what patients feel while waiting for scan results or trying to get an answer to a question. It seems so inconsiderate to me to that they make you wait as long as some of you report waiting for information about your tx. I would have a hard time dealing with that.
Wendy, I didn't mean to imply that you absolutely need a bone biopsy. I was just sharing something I think is worth knowing, although maybe more imperative if someone starts to show drug resistance, which isn't your case at all. In your situation, it sounds like you had an average run with Tamoxifen, and thankfully, you still have many other options available. And certainly women here report becoming NED on a follow up drug -- not always their first one. As far as bone biopsies, I lucked out (if you can call pathological fractures necessitating a hip replacement lucky!) because they were able to get bone from that surgery in lieu of an anticipated biopsy. And I totally feel your frustration about MM -- wondering now to what degree it's helping... hoping it is, but suddenly not sure. Maybe it would have been worse if not for MM???
lattelover, I'm so sorry about your Mom's mbc. I am not familiar with the drug(s) you're asking about. Have you researched them? I took a quick peek just now at where Switzerland ranks in breast cancer outcomes, and they're actually quite a bit behind the US, which is disappointing enough at #9. Not sure how or if that should factor into your thinking, but it's just something I was curious to know. In other words, maybe I would have put more credence into something used there if their stats were significantly better than ours. Here's that link if anyone's interested. http://www.wcrf.org/int/cancer-facts-figures/data-... Oh, and your avatar looks exactly like my dog!
DF, I'm just so sorry about what you're dealing with and hope you can get your Mom moved to rehab very soon. Do you have a good one of those where you live? I hope so!
Glad you got to see your parents, Babs. And it sounds like you've been wise not to confide in your step sister. Were you close before your re-dx? Can you reconnect w/her and not talk about your mbc dx, or would you feel compelled to tell her, or do you think she'd know something is different?
Patty, how're you doing??? Deanna
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Wind & rain is back, so I'm back here too!
Lindalou, I don't mind gardening for you, dirt therapy is great but I would appreciate it if you would come & pull your section of the weeds!!
The pop weeds are already in bloom & about to set seed.Deanna, I'm not waiting for results from my MO, I'm hoping that she is getting information about the POG program, though I don't know that for sure. All I know is that I'm not waiting til my appt at the end of May to find out if I qualify. I will be discussing it tomorrow with my PCP.
Amy, I forgot to say that I didn't realize you were in hospital (or if I did, I've totally forgotten) I'm glad you're out now. You have always been so helpful to me, I feel bad for not noticing your absence. ((hugs))
Babs, Good for you for seeing your step mom & your dad & sparing them the details of your rediagnosis, though I'm sure they would be upset with you if they knew, but then my dad knows & yet doesn't ask how I am. I don't get along with my brother, so I can totally relate to not wanting to tell your SS.
Couple of shots from the garden today. Take care everyone, love you all!! cheers, Dee
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Dee and Deanna,
I actually get along really well with my SS and we're close but she does have a problem keeping confidences. I've just been so busy dealing with everything that I haven't called her lately and she hasn't called me since she started a new job. She would never realize that something is up here-she is pretty self absorbed. But, to know her is to love her!
Dee-Love the garden- I do miss having one!
Babs
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Wendy-I had an MRI guided biopsy of mets in my spine (T12, L3,4). I had local pain meds and once I was out of the wheelchair at the entrance to the building I walked to my car a few hours later. No pain.
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Beautiful flowers, Dee!
Does anyone else here use one of these foam mattress pads? My hubby needed a few things at Wal-Mart yesterday, and he came home with this for me, and I swear, I had the best night's sleep I've had in ages! We have a thick foam pad that is just too firm w/my bone mets, so I had simply put a doubled up down comforter under my part of the bed to soften it. But this foam thing he bought was so much better! He'd already tossed out the packaging when I photographed it, but if anyone needs the brand info, I can look for it. What a find!!!
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Deana love love those things best night sleep ever.
Thanks Ellelou I will ask about it tomorrow the question is at this point would it make any difference with treatment? I would be eliminated from the clinical trial I think. You'd think they would want to know that themselves....
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Good morning all,
Dee - Oh Dee please send some warmth and sunshine out east! and flowers... There are piles of snow from all the shovelling here and another 15 - 18 inches coming this week.
Terre - time to buy a lotto ticket and fly us all down! Or would you rather come here in the snow...
Deanna - funny I was thinking of a foam mattress pad lately. Pain is bad during the night for me. I will look for it on Wallmart's website.
Patty - waving at you. How are you? And to you too Bosco. Sending you both extra hugs.
Wendy - you are very much in my thoughts lately. Like Deanna I "lucked out" by having a biopsy done on femur which confirmed hormone receptive. One thing I have learned since dx, is to be very proactive in questioning and challenging docs. And this thanks to this forum which is a wealth of information. I don't know about BC but here in Quebec, there is a shortage of MOs etc vs the quantity of patients. Not always easy to navigate through this "free" health care system but I don't let them off the hook until I have answers, which usually takes 2-3 weeks LOL. Bad joke, I know. One more thing about Fas. Although approved by Health Canada, most provinces didn't approve it. However, it can be requested on an exception basis. My MO told me it was never refused but it requires a lot of paperwork. My ex-employer's medical insurance covers it, but will be very costly. MO mentioned part of my cost could be covered through the pharm co. OK TMI...
Sending hugs all around.
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Hi ladies,
Dee, I love those photos of your garden. Being out in the sun with the dirt must be so therapeutic and feel so good. It felt good to me to be outside this weekend and get the vitamin D.
My aunt visited a little on Sunday, and that was nice. I need to have more supportive people in my life more often, like every weekend, instead of me just running errands.
I've really been struggling w depression. The feelings of, do I really only have 2 years left to live? (I'm almost at my one year mark). I've seen so many young women die that it seems almost like the norm to pass away that quickly if you are younger. And that makes me so angry and bitter. I want to see my daughter grow and develop and I want to see what my son will look like when he's a young man! I hate that I will miss all that! I am going to see a psychiatric NP nearby just for meds adjustment. She wasn't recommended, just someone in my plan, so I hope she's helpful. How do I get past these panicky feelings, like I"m wasting my time at work and should be home w my kids? If I only have a year or two left, I don't want to waste it working, but we are in such a bad financial situation. I did call my work about buying my life insurance policy before I die, but it's really not a lot of money, but I guess any amount will help. They are mailing the form my doctor needs to fill out to me. I also think that the stress between me and my husband will only make me feel worse and speed up my dying process. It's a real "why me" day here.
Wendy- I've never had a bone biopsy and wondering if I should get one. My onc said it would be really difficult to get it, but she's not a surgeon and she's only one opinion. I don't even know who to go for if I want one! I will bring it up again next onc appt end of March.
Deanna, that mattress cover looks awesome to me, maybe I need to get one for my mattress.
DF- I never said welcome, but welcome here, and I do hope you can get your mother out of that awful hospital from hell! You sound like a very good advocate but like you also need to remember to care for youself first.
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Hi all!
I want to share all the sunshine that we're having with all of you!! Tomorrow we're supposed to be back to dreary rain, so I'm heading back out shortly. I wish I could somehow wave my magic wand & get rid of all the snow!
I just got back from my PCP, my TM's are all normal, yay. He wants me to call my MO's ass't again regarding the POG program & if she doesn't get back to me within a week, he is going to send her a stern letter. We both think that she doesn't want to relinquish control. And I am on the low end of normal as far as my thyroid is concerned. He says he will check again in 6 months.
We bought a 3 part latex mattress a year ago & we both sleep much better. You can even get both sides with different firmness. They aren't inexpensive, but a good nights sleep is huge so we did without a couple of other things to make it work.
Cristina ((hugs)) I don't have any advice for you, but please don't ever hesitate to come here to vent, or by PM if you want.
Best thoughts to all of you here, cheers, Dee
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cristina, I wish I were nearby to talk with you personally. You wonder how long you will live, and that is normal. Nobody can ever say how long you have. Every day, there are new developments in treating breast cancer. You may live longer than anyone predicts. There may be a new drug or other treatment that will prolong your life. Have you considered joining a clinical trial? The American Cancer Society has a database and can do a search and send the results to you. ACS also has a Reach to Recovery program that will pair you with a breast cancer survivor that might give you sime emotional support.
Gardening is amazing therapy. The NCI is funding a study of the potential role of gardening in helping breast cancer patients cope after treatment. Those in the study will learn how to garden. I didn't quantify because I was already a gardener when I got my dx. Having my hands in the soil, planting things and watching them grow made a very powerful contribution to my mental health. I have a yard full of plants and now it is time to give some away and to thin out the overgrowth.
Depression is very real. A large percentage of breast cancer patients suffer from depression. Cognitive therapy has proven the most effective, I think. Medications can help pull some people out of a depression, but they often mask feelings and keep the person from addressing the issues. Still, medications can be very effective in some instances. If you take any meds for depression, make sure they don't interfere with cancer drugs. It is a good idea to have your thyroid checked and talk with the NP or with your family doctor to rule out other physical reasons for depression including vitamin D deficiency. I tried nearly every antidepressant on the market, but my doctors finally realized that I had an anxiety disorder that made me depressed. One of my doctors wants me to try l-theanine, a green tea extract, for its ability to relax a person and lower anxiety levels. Still on the fence about that decision.
My mental health improved when I joined a church. I don't know if and how much I believe what is taught but it doesn't matter. Just being around people that share my values has helped me greatly. Not preaching any religion, just saying that belonging to a church helps me cope. I had a somewhat wild life, but I gave it up to join the church. I get some support from church members that I like.
I have heard and probably read that volunteering helps improve mental health. Doing something for someone else is apparently powerful medicine and can also be a way to meet people.
It is amazing that you are able to work! It must be very difficult to balance the desire to spend time with your family and financial concerns. When I was growing up, my mother left the workforce. We didn't have a lot of material things. If you can cut extras out of the budget and go without things that are not necessary, you might consider staying at home. Also, if you could work at home you would have more time to spend with your family. You would spend less money on work clothes and transportation so maybe you could work fewer hours. Just some thoughts.
I am researching ways to register formal complaints against the acute care hospital and another hospital where terrible things happened to our mother. It is a long story. I have discovered a way to report the acute care hospital for civil rights and HIPPA violations. The other hospital was neglectful to an unspeakable degree, and my brother and I almost lost my Mom. In the eleventh hour, we found out about a probate court hearing concealed from us by my mother's brother and sister that would have thrown my mother into a mental institution. We rushed to prepare ourselves and went to court and brought our mother home. It was about three days later when my mother complained about back pain that we took Mom to the ER and discovered that her breast cancer had metastasized to her bones and liver. I am going to submit an official complaint about the hospital's effort to institutionalize my mother for mental illness. My mother had a medical problem that caused her strange behavior, and the hospital was treating the condition successfully. It was a gross misrepresentation of the medical facts to institutionalize my mother on the basis mental illness when the staff doctor knew my mother had a treatable medical problem. The state public health complaint division will swoop in with no advance warning and will have access to all of the information available to determine what happened. Nearly losing our mother shattered our feeling of peace and security for good. She would not be alive now as the oncologist told us she only had four months to live without chemo for the mbc. That was last March.
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Deana, I meant to say in my last posting that we bought a nice pad from Walmart similar to the one you did, but I would love the know the brand of the pad in the photo. I can look on the Wal-Mart website to see if I can find the a pad that looks like the one you got. Thanks for posting the photo.
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Stillin hospital. They saying tomorrow i can go home but they been saying " tomorrow " almost everyday. Ptob still need to be innhere with the dizziness , double vision and exhaustion. Cant remember if I told y'all the latest guess from them. Low blood pressure , causinhnhig heart rate to make up for Bo. I dunno about all that but truth is my Bp always bottoms out when I get to er. Knowing it's probably not such s easy fix with a BP pill. Trying not to get hopes up yet again. Already done that plenty of times.Big hugs for the support ladies. I am so ready to help
Sorry hard to read whats going on will all right now. Just know I send hugs to all
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Patty don't worry about reading the posts. Right now the most important person is you. Praying that soon they'll find a solution to your issues. Please God give Patty your blessings for healing and getting out of the hospital. In Jesus name. Amen
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amen.
Ds1 birthday is Wed. I just can't = won't be in here for that
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Hi, sweet Patty, dear girl, I think (know) that everyone is hoping for a solution to your very real suffering. I got chewed out on another thread privately for bringing up religion. So, know that I will be asking for the great power of the universe to surround you with warmth and love and give you the energy to heal.
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Patty, We are all with you and sending lots of love and healing your way to leave the hospital very soon. Sending you strength and gentle hugs tonight.
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Patty sending you positive thoughts of healing and peace and wishing this tomorrow you will get to be home.
Chistina thinking of you as well and sending you thoughts of peace for your mind and body.
DF such a sad story wishing you and your family and dear mom find some healing.
Mary
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Far behind in reading again and back in Auckland. Client called at 5:15 last night and wanted me here today. So here I am. Hoping to catch up with reading later tonight. Thanks for the good wishes!
Did have to share something funny. Auckland hotels are totally booked. So choices are $1000 per night rooms or "no tell motels". I'm at the second no tell motel in 2 weeks. So..I have a room at a 5 star hotel in a premier suite coming...but this week, I have a room with frayed carpet and a view of razor wire around the neighbour's property.
Will just make the five star that much nicer, I reckon!Patty - hope you get home soon. Cristina - depression sucks! Deanna - I want that mattress pad! I have the same problem.
Sending hugs and love to all..sorry not to address each of you.
And Dee - I posted the cutest pic ever in the cats cats cats thread.
Terre
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Patty: thinking of you and hoping the doctors can get you feeling better, get to the bottom of everything, and bust you out. You put up with so much and ask for so little in return. I just wish I could be there to help you!
Cristina: I think it's so easy to feel overwhelmed by all you have on your plate, especially with carrying the financial burden as well. My husband and I have gone through some awful times. I remember putting a day on my calendar a few weeks out that was going to be the day I had my nervous breakdown. But the day would come and go and I would be stronger than I thought. I just needed to feel like I could fall apart if I needed to. Your kids' spring break is coming up, right? That is something to look forward to. Being in your own head can be the worst. We are all here for you.
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So here's the package for that foam mattress pad.
Terre, I don't like you having to stay in the no-tell motel part of town, but I love your can-do attitude about it! And yes, 5 star luxury will surely put a smile on your face after this week.
Patty, I hope you get to go home today, but more importantly, I hope someone will get to the bottom of these problems, so that you don't continue to have relapses.
cjanet, I'm glad you had a nice visit with your Aunt. And yes, some younger women have extremely aggressive bcs, but most of those are the more rare, more aggressive types than what you have, with far fewer tx options available to them. It would be great if the new doc you're seeing knows enough about mbc to help you discern those differences, for example. Otherwise, someone who deals with mbc patients, knows bc lingo, and the SEs of the drugs we're on, etc., might be worth seeking out.
Hugs to everyone! Deanna
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Patty, I hope you can get out of the hospital for your son's birthday on Wed! Make sure your hubby has set up balloons for him!
My son's 4th birthday is Friday. He has no clue. He keeps telling people he's 11 years old, the stinker. I'm thinking of asking the neighbor's kids over for cake in the evening.
My husband lost his wallet at Shoprite last night. A good samaritan gave it to a cop and the cop brought it to our home last night. I can only roll my eyes. I can't deal with his ineptitude.
Thanks for all of the support ladies, I so appreciate it.
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Thank goodness a good samaritan found it and an honest cop brought it back! Sounds like a reason to celebrate to me!
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Scans back and there is progression to more bones. No organs. Estrodial going up despite Lupron letrzole/ibrance. Doc says no to ovarie removal and may switch back to Tamoxifen. Anyone have similar experince
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Awww Suefit. No advice but sending a hug.
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