Bone Mets Thread
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Hi everyone! I have been gone a couple days but wanted to post an update about Mom. She was placed in an awful facility for a few days. When she went to RT on Monday she said she wouldn't go back there and was admitted for a few days for pain control and replacement. Most places denied her because of her cancer. We did find a decent place that is better than the first. She seems upbeat and ready to get stronger. Her last RT to her spine is tomorrow. Tuesday is her onc appt.
ER/PR +/Her 2 positive. Now that we know she has such extensive Mets and is her 2 positive all I do is look at the same crummy statistics all the time. Every time I see my brother calling my phone I am afraid of more bad news. Maybe just a down night for me.
I'm going to go back and read what I have missed. I'm hoping every one of you is doing well, physically and emotionally. Thanks for the shoulder to cry on right now.
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Hello to all,
Myra, so happy to hear you're back home. Please rest and take good care of yourself.
Could someone please share what is going on with Holley, I don't have Facebook and I am concerned.
Niki, don't look at statistics, there are many Her 2 positive women here having successful treatment for many many years. Wishing the best for your Mom and we're here for you.
Hugs to all, Annie
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Annie, I'll PM you.
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Deanna, thank you, I appreciate it.
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Pm me too please Deanna. Typing on the phone at the airport..will catch up tomorrow.
Glad you're home Myra.
Niki - DO NOT READ STATISTICS!! Out of date and wrong!
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So first things first Myra thank goodness you are home safe and sound😌 this has made me a very happy camper.
So I have something very weird to share with you ladies. I saw my oncologist this afternoon and am in a bit of a fog. So the tumour was measured and it has shrunk a very minimal amount only .3 cm this time round. What got me was my oncologist sitting across from me looking into my eyes and asking me if I would be willing to try something new. She said and I'm quoting here she can't say the four letter C word to me because I am stage four but she believes with targeted treatment I may be without cancer very soon. She said my cancer isn't acting like it should it has stopped growing and I have no bone met symptoms to speak of , so no pain. I am supposed to have a met on my T4 and on my fourth and fifth rib. She wants a set of scans done so she can convince a radiologist to zap the bone met areas and a surgeon to do a lumpectomy. This will depend on my scans of course and what runs through my little noggin what if the scans show progression. She felt that would not be the case because I have no pain or other symptoms. What a turn around from the last visit. She thinks the tumour is dead, I was like that's possible? So I am crossing my fingers that my scans turn out well and then we go ahead. She attributed a lot of my success to excerise and diet. I hate to bring this up again but I have to when I see the suffering this disease can create. Ladies if you can get your hands on some CBD pills these are the cannabinoides present in Marajuana please take it. I fully realize how flakey I sound but a wise friend once told me heck if eating dog poop would save my life I would do it.
Okay sorry for the rambling who knows how this will turn out for all of us. I care about you guys so I want this for us all☺️.
Wendy
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okay ladies I need your input on this one. Exactly one month ago -- please don't think I'm nuts-- I decided to treat myself to juvederm and botox. I just wanted to perk myself up. The PA, who I have been to before, injected juvederm in my hollow, stressed out checks and also the corners of my mouth to lift them. I had bruising at the corners of my mouth and some residual numbness on the right side. Two weeks later still numb. Feels like I've had novacane. I can't tell you how many times I've bit my lip while trying to eat. The numbness has spread down my chin and inching it's way up the other side. The PA has never had this happen before ( of course). I'm on faslodex and zometa. We think she hit a nerves and traumatized it. I guess I can live with that in the scheme of things. But then I read that facial numbness can be a side effect of zometa. Also dr. Google mentioned face mets. So, panic....called my onc. I had a full pet/ct scan two weeks ago ( remember numbness started a month ago). Onc. Says not cancer and he doesn't think it's zometa. Please has anyone experienced facial numbness on zometa? I even upped my vit. C as zometa lowers it and numbness can result. I am so freakin tired of all things medical and at 56 and after spending the last 6 months so stressed, depressed and sad, I just wanted to feel pretty. Any ideas? Please?
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Wendy - I know you're in Canada, but were do you get your CBD pills? Are they prescribed by your MO? And what type of diet do you have? Your post has made very curious.
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Hi Jazzy so as far as diet I have cut out sugar pretty much altogether with the exception of coconut sugar on my oatmeal in the morning. No dairy at all no cheese no milk no dairy. No red meat meaning beef and pork the occasional chicken. No alcohol at all and I was a big wine taster. I juice every day fresh veggies carrots and greens a lot of juicing. I eat a lot of raw food and mostly vegetarian diet. I go to the gym everyday for an hour cardio half an hour and half an hour weights. The CBD pills I can get here in Vancouver with a green card we just have to prove that we are sick and it's that easy. Depending on the type of breast cancer you have determines the treatment. I am er+pr+ her2- so I am supposed to take 4 to 1 CBD to THC . So I take four capsules daily of CBD you don't get high as I mentioned before it feels a bit like you've had a big cup of coffee. Oh yeah no coffee only green tea. I got most of my diet from Kris Carr a fellow stage fourer who refused to give in. It's not for everyone but hell if I can get myself under some control then I would do anything. Sadly no chocolate either and that was hard at Christmas I tell you.
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Jazzy I see your in Oregon you got this.
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Wow, Rachel ~ So sorry to hear what you've been going through, but it sounds to me like it's a direct result of the filler injections. The fact that it's never happened before means nothing. I think I would see a board certified plastic surgeon ASAP to see if something can be done to reverse or minimize what sounds like possible nerve damage.
Wendy, that's incredible news! As you probably know, medical marijuana is legal in California, and your story certainly makes me want to look into it. I'm so happy for you!
Niki, I second Terre's advice -- do not read outdated stats! There are several new drugs and new chemo regimens that weren't around 5, 10 or more years ago -- some approved at recently as 2015 -- and quite a few more in the pipeline now. Those stats will improve significantly when redone to reflect today's tx's.
Patty, this is the second day of taking my Ibrance @ lunch, rather than dinner. I slept great last night and yawned my way through a hair appt this afternoon, so hoping to sleep well again tonight. Just mentioning it in case Ibrance is part of your insomnia issues. Deanna
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Sending good thoughts to all facing scans and tests. Dee - two week wait is crap!
Happy for the good news Wendy!
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Wendy - Oh man (woman) your killing me! NO coffee or chocolate! Argh! Sugar is an issue of mine. Soda used to be my worst habit, but I've only had 4 sodas in the last 10 weeks. I'm working on it though. I bought an excellent water purifier a couple mos. ago, so I have been drinking much more water with lemon juice and stevia. But I know I still have a lot more work to do in this area.
What about grains, potatoes (regular & sweet), oatmeal?
In regards to the CBD pills, after I posted my questions to you I did some research on which strains of marijuana are grown specifically for their CBD content and I found it quite interesting. However, despite the legalization of marijuana here in Oregon, because I live in an apartment that is subsidized by HUD funding, it is considered Federal Land and therefore illegal for me to possess any marijuana products in my apartment or anywhere on the property. So if I where to go ahead and get some of the pills, I'd have to store them at the home of someone I who lives off property, because if I were to be found out, I'd be evicted in a heartbeat. Even so, I will still talk with my MO to see what she says.
Oh yeah, my BC is also ER+/PR+, HER2- and I am presently on the Faslodex/Ibrance combo, with Xgeva every 3 mos.
I have discussed my using an elliptical machine with my MO and she hesitantly said I could give it a try, because my mets are in T11.
If you have any further suggestions, I'd be happy to hear them. Thanks so much!
Sorry I almost forgot to say hooray!!! to you for your great results.
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I'm not giving up my coffee!
http://www.naturalmedicinejournal.com/journal/2011-07/coffees-effects-breast-cancer
http://www.nhs.uk/news/2015/04April/Pages/Coffee-c...
(sugar and simple carbs have to go, though!)
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Good morning ladies
Myra- I'm so relieved to know that you are home. Rest up and when you are ready, feel free to vent all of your fears and frustration here. We totally "get it". We are here for you!!
Rachel- I have never had numbness from zometa. But my mom has had facial numbness from a dental procedure. The nerves can heal themselves. She is fine now.
I saw my onc yesterday before zometa infusion. He was astounded at my reaction to tamoxifen. My breast tumors are hardly detectable and all,of my bone mets are inactive. I have been on this txfor a little over three months. I have also been on the 4-1 CBD- THC regime. Can't be positive as to which tx is working ( marijuana or tamoxifen) but I'm not changing a thing.
Zometa infusion has me down and out. Fever,aches and pains, vomiting. Yuck!! Will post more later. I love you all so much. Couldn't do a minute of this stage IV crap without you. Thank you all for just being you!!
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Milaandra I don't think the coffee is so bad I have gotten through the head ache withdrawal and don't miss it even though my husband is a coffee hound. I am not militant about it I do sneak into Starbucks for the odd treat. Sugar I am militant about , it is food for cancer and I can't bear feeding this monster.
Jazzy wow so they legalize it with strings not cool. The best strain for the CBD is the indica most CBD. I wish you all the luck. I have very bad knees I've had two surgeries on the left one and thE right one is bad too. I use the elliptical trainer at the gym and the recline bike. Jogging is not my thing anymore. Good way to get the heart rate up and send all that medicine to all those little nooks and crannies. I'm thinking of you. Take care.
Chelle I'm sorry you feel crappy and I'm so glad you have your family close. You go girl we are doing are own clinical trial of sorts. I'm not changing a thing either love you girl. Hugs feel better. Have you ever tried homemade ginger soda it's really good and helps with stomache and inflammation issues. If you want the recipe msg me. It tast like a really good ginger ale but no sugar. Hugs
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Hi Ladies,
Interesting talk about CBD and medical MJ. I too live in CA and would definitely consider it at some point in time. About "strings attached", marijuana is still illegal on the federal level, regardless of what individual states choose to do. So, if one is in federally funded housing or has a job with the federal government, having MJ, whether medical, legal or not, puts one in jeopardy. Federal law and states rights can be two different things, but federal law wins out in areas where they're the boss
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I just wish I could get some to try. There is a bill that has been introduced in my state to legalize medical marijuana. I met with the chairman of the health committee in person to request that at least a hearing be held. He spent about 15 min with me and said he clearly was not going to even think about holding a hearing. The female representative who introduced the bill is pushing for a hearing as well. Her husband died of pancreatic cancer and she saw him suffer. I was disappointed that most likely not even a hearing will be held. The bill is very specific and is designed to help those of us who have a terminal and/or incurable disease. When my meeting with him had concluded, he said," I hope I never have a disease like yours."
Wendy, would you please send me the recipe for the ginger ale?
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momalltheti… memebers only Joined: Nov 2014 Posts: 149
Post a replyAn hour ago momallthetime wrote:
Hi everyone, i know many of you from way back, i'ts so nice to see you here. Romansma, Deanna, Patty, Ellelou some of the name I see here.
Chelle they say drink to a lot. Feel better. You should not have to feel so bad after Zometa.Lindalou thanks for recommendation to the Ibrance thread, I did meet many of our group there. Romansma, wow it's been so long, I gotta do a lot of reading, but have you heard of her?
Deanna I just read about the change you made of Ibrance in the afternoon, is that because of the dreams that I was reading that ppl have? Why did you make the change.
I posted a question on the Ibrance thread I will copy here, maybe you ladies could help with that. I am holding off calling Onco questions till I know what I should ask.
My concern is first : she is HER2+ I know Ibrance is specifically guided for women with Her2- I called Pfizer, they said they don't have any studies for Her2+, but doctors do use things off label, so how many of you are Her2+ because won this thread almost all of you that are on it areHer2-, so if you could tell me how is that working for you.
Also, what's the usual for the Nadir, on the WBC?? She has plans to go away w her fam away for a few days on the 24th, would that not be the week she would feel the worst? And is it then the norm for the WBC to go low? Because I might speak w Onco and maybe he should continue the other tx, (which also could bring down her WBC, but....)and then skip the wk that she will be away, and start when she comes back bcs what's the idea of her feeling sleepy weak or scared of being in a multitude and then ruin that week. How can you all advise me?? I need to call him soon if we are to change the schedule. And one more thing, for those on Ibrance/Letrozole did you have hair loss. (I am sorry to ask, but I wanna prepare her, her hair just kinda started picking out so I'd tell her what to expect)
And the mixture will be Letrozole not Femara. He wants to try it for 2 mos then scanning again.
Lynne so glad for you that you are holding here. DH has every 2 wks testing for Coumadin, cardiologist prescribed a standing order prescription stat, so we go to the lab and cardiologist gets the results the same day(or it's supposed to), and then we make the appropriate changes, we keep a chart literally so we could keep track of the various changes, bcs he could say 2pills 2.0mg and then one pill like 1.0mg - so you could go a little crazy. But it's doable. He is used to be stable for years, then had a colonoscopy, they took him off it for 2 days, and then when started back on Coumadin since then, he can't get his blood stable again. But it's great news about the kidneys.
Deanna what's with the post from Holley? What happened.?She is so sweet.
And I know so many of you are cheering for us, I read it through quickly, thank you so much!You are the best.
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Wow Lindalou did he say why he would not even think about it? What a knob and then to say I hope I don't get what you have I would be livid. The recipe for the ale is super easy peasy. Slice two cups of fresh ginger and I through in some fresh Tumeric use an old pot because it will colour it orange. Add water about six cups and low heat for about an hour seeping. Remove strain add a squirt of lemon juice and a little honey ( I know sugar but it's not refined ) just a little then pour into a jar and keep it in the fridge. Add this syrup to sparkling water at what ever strength you like I use about 1/4 cup for an 8 ounce glass. I almost don't even miss my sparkling wine😳.
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This thread moves fast!
Thanks for all your support and help. I will do some more research on Gemzar and bone mets specifically. I spent so much time researching my own diagnosis that I couldn't give all my attention to my brother. He has a PET scan today to see how Gemzar has been working. We're hoping for at least stable or decrease.
Annie, I'm sorry you have to be here but you'll find so much support and advice. We're all here to help and learn from each other.
Wendy, have you heard of Dr. Jane Plant? I know the connection with dairy and breast cancer isn't studied enough, but after reading her book I gave up all dairy products and I am starting to cut down on added sugar. I think we focus so much on treating cancer after it happens but we know almost nothing about preventing it from happening in the first place.
Best wishes to all.
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Hi ladies,
Anxiously awaiting the results of my scan today. My doc has the results but wants to see the actual scan, not the written report. So I don't think it's very good, but we'll see. My daughter who is 7 y/o has suddenly decided she wants to foster a kitten from the local shelter. I have completed an application, called them today, and will visit tomorrow. I don't know when we will actually get a kitten, but I think this is good for me. I love cats and maybe it will help me feel a little better about things. I've heard so much bad news on FB about ladies w MBC it's getting me down.
But hearing about Chelle and Wendy has me excited! Medical marijuana is legal in NJ but I need to jump through a bunch of hoops to get it. I do have stuff I can smoke in a vape pen but I don't know if it's the right strain, etc. Also both of you don't eat sugar. I have been very bad lately and really need to work on that again. It doesn't help that almost everyone around me eats sugar and there's no support for me not to eat sugar. Wendy how do you do it? I love coffee too and won't give that up.
Rachel, I really don't know what to say to you except see another plastic surgeon like Deanna suggested. That really sucks that happened to you. I don't think I would mess w things like fillers and injections while I have cancer too, but then again, I already have cancer so does it really matter? I go back and forth. I do hope it's something that fades away w time, and the feeling comes back!
Have a good weekend ladies. I think I will be around. Will let you know later about scan results.
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Wendy and Chelle, I'm ecstatic about your good news! Whatever the two of you are doing keep it up! Medical marijuana is legalized where I am from too, you can get it in many forms, even as a cookie. When I talked to my GP she downplayed its benefits but I am thinking of talking to her again about it.
Momallthetime, best of luck to Dani on the Ibrance/letrozole combo. Praying this is the treatment that turns out to be very effective for her.
Cristina, sending positive thoughts for your scan results.
Hugs to all, Annie
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Cjanet my tastebuds have so changed I don't miss it at all and combined with all the other stuff I do for my health I have filled the cookie void with other goodies that are good for me. A vape pen won't do it, it may take pain away but shrinking stuff I don't think so. Sign up and get yourself a green card the folks in the dispensaries know what they are doing most of the ones working in Vancouver have some sort of illness as well and are treating it with this method. Cjanet cut out all processed sugar and dairy products it will help you. There is just way to much information out there to ignore. You have the same cancer as Chelle and I this should work for you. It sure can't hurt you. Let's wait and see what my next scan says if I don't light up like a Christmas tree then we are on the right track.
Annie I have had a few conversations with MOs and surgeons and so on they never like the medical marajuana . It's hard for them to judge if it's their treatment or because of something you are ingesting that is making you well and they see that badly. A lot of doctors I've spoken with are thinking Cheech and Chong type stuff and have read none of the studies that have been done. I think they just don't know.
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Chelle, will they give you xgeva instead? It seems to be better tolerated, not to mention so much easier
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Milandra, I will be asking about that! I hate knowing that I will be sick for three days! I drink a ton of water before, during and after. Nothing seems to give me a break. It is only my second infusion. Perhaps it gets better with time.
Christina, here in Colorado, we jump through some hoops too. Recreational MJ is easy to get anywhere. But the good medical grade you must have a " red card" smoking it isn't the best way to get it moving through your system. I use a dropper of 6-1 CBD oil as well as an un activated thca oil. Also a transdermal CBD cream. The cream you rub directly on the tumors. It is a great pain reliever. I would recommend it to everyone to try. I am a daughter of a police officer, wife to a police officer and a devout Christian. This isn't something I do to be high. I do it to try and kill the cancer. After my positive experience, I will be a strong advocate for its legalization everywhere. This treatment has only pleasant side effects. Totally worth trying! Just give it three months. You will not be sorry!
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waving hello. Feeling yucky. Back to bed.
Hugs
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Waving hello back at ya Patty, sorry you're feeling yucky. I'm feeling pretty crappy today too, just getting into bed and I hope I can sleep. Sweet dreams and feel better in the morning. (((Hugs)))
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chelle - how much of each of the oils do you use daily? I plan on talking with my MO next week about a script. I just need to figure out how to have it available without actually having it in my apartment, since I live in federally funded housing. The Feds and the states need to come to some kind of consensus so all cancer patients have equal access.
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continuing the dog theme and to start the weekend with a smile, here's a card for all those who've been through the puppy chewing stage...
"I was just sitting here when it exploded - I am just as surprised as you are"
Hasn't come out v clearly but you get the gist
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