Bone Mets Thread
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Wendy, I can't wait to hear your updates during the trial. I hope this is just what you need to kick cancer to the curb and become NED and stay that way for a long time. So no vitamins but plenty of strong pain meds or whatever? Heehee. Seems funny to me, but I suppose it is easier to monitor and keeps everything prescribed within the protocol that they have set up. Isn't it interesting that our questions can still baffle the "experts" like your onc? I am glad that you did not have that area radiated for nothing. Sometimes I feel like it's all just a crap shoot, but that's all we have. I will be sending you positive vibes and thinking about you on Thursday.
Lynne
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Good Evening All,
I pm'd Myra and she is having tx that is not making her feel well. She said I could tell all of you. So Myra, if you are reading know we are thinking of you and don't worry about catching up. This thread moves too quickly, so pop in when you can. Miss you and Mallory pictures!
Linda
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Thank you Linda. Myra, sending you lots of love and hugs. Miss you too.
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Myra best wishes.
Pattyp ahh so nice to hear from you. Take it easy.
Wendy wow, you are very brave for getting into the Clinical trial. Yes, you should be monitored very close, so you will get that, and hopefully it will really be a help for you.
Annie, coming along. Dani always tries to chug along with the SE, mouth sores now....agh
Everyone so glad I could put a smile on your face!! It made my day.
Mary how is it going?
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thinking of everyone this evening, but holding Patty & Myra close.
Amy
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Hi everyone
What a great group this is. Thanks for all the comments on my daughter's tatoos over time she will add more color. I screamed when I have been given radiation tattoos. So don't think I could tolerate more than a dot.
I continue to worry about my mother, my son and my cousin and her family. I am trying to let go of what is not in my control, and see what I can control. Hard work!
Wendy, I am crossing my fingers and toes hoping the trial is the perfect medication for you.
Patty glad to see your post. Wishing you continued healing.
Lynn thinking of you and hoping the dark days will pass and you can enjoy your dh's good health.
Lindalou you are so kind to reach out to me, to Myra and I am guessing many others. Are you done with your brief teaching gig.
Momallthetime I hope dani has some steriod mouth rinse. It helped me avoid mouth sores.
Annie, I just hate how finances are such a big part of medical decisions. You do seem so wise to be thinking ahead.
peace to all of us
Mary
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Hi ladies,
I wanted to say hello. I can't catch up, too busy at work. I have a funeral to go to all the way in Connecticut tomorrow, my aunt's. Aunt Mary was 82 and had Alzheimer's. Last week she had a fall with a brain bleed and the doctors said it was a matter of days, so they made her comfortable. She was very much loved. I know it's a funeral but I look forward to seeing and hugging my relatives, much as we did at my cousin Kris' funeral last summer. This is different too, as Aunt Mary made it to 82 and Kris was 35. I am continuing to struggle w pain and my relationship w my husband. I don't want to keep complaining. Just know I am glad that you ladies are here to be my support if I can't reach out all the time with people around me.
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Hi Cristina,
Sending hugs your way to comfort you for the loss of your aunt Mary but also for the difficult time you are having with your husband. BC is tough enough but pile on troubles w a spouse...awful. I am very sorry you are going through this.
I hope you are strong enough to make the trip. Hang in there. There's a lot of us rooting for you.
Amy
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Hi all,
I haven't been around because both my laptop & ipad are doing strange things on this site. Everytime I click on a page here it jumps up & down, drives me crazy, so til they get this fixed I don't spend much time here. But I am thinking about you all & hope everyone is ok.
cheers, Dee
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We're thinking about you too Dee
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Dee it happens to me too, and many times I write stuff and all of a sudden it it's it up, yep - frustrating.
So, getting serious about food intake. What would you ladies say are the kind of foods to stay away from either at keeping the C thing at bay or out of our lives. Dani wants to cook and buy more healthy type of food, with the little ones at home, she is always thinking chicken, meat? One day the world says no to chicken, it's the worst, then meat is the worst, then splenda now they just found out NO splenda, No Canola oil, when for years they swore by Canola, now only Coconut oil. What are you doing about it in your lives? What about some snacks? Yes, carrots, but in more fun ways? Raisins in the box? Are they not artificially sweetened? What oh what can one eat? K - waiting to hear all the good stuff, have a wonderful day!
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Hello to everyone and special thoughts for those who are having a tough time.
Cristina: good luck with the drive and services today. I'm sure you will be tired tonight, but hopefully it's a good tired and you get to spend good time with your family remembering your aunt.
We went to an exhibit opening Friday night at my old work. It was wonderful to be back in my element and see my colleagues and donors. It brought up a lot of confusion about how to plan my life, without knowing how much good time I have. I want to spend every minute with my kids, but if I'm going to be around for awhile, I should probably get a job. My Social Security just kicked in after the waiting period. I think ideally I would do something part time but I would be over the maximim income so quickly and lose the benefits that I would almost have to work more than part-time. Oh well. I will save that decision for after the summer. Looking forward to creating a memorable summer with the kids. Definitely in need of some counseling to figure out how to live my life without always worrying the bottom is about to fall out. Maybe will make that call today.
Is anyone going to the metastatic conference that Living Beyond Breast cancer is putting on in April? Has anyone gone in the past and found it valuable? It is here in Philadelphia, so I am going. I will be sure to report back!
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Rachel what a beautiful family! Your daughter looks just like you. Did you get the results of your spine MRI?Having an infusion and catching up on reading here.
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Hi LindaLou: I did. It's broken.
But has been broken all along and doesn't look like anything active and is only causing minor discomfort.I have the report but haven't discussed it with my MO yet. 0 -
momallthetime, I've been researching food too and have generally found recommendations to eat lots of blueberries as there is a property thought to keep mets at bay, cruciferous veggies, grass fed and no hormone chicken and beef, fresh fish, greens, no white sugar. I'm moving toward food in its original state and will try some fresh veggie juicing too. I have some weight to drop anyway so this should help me regardless. I met with a nutritionist early on before I knew I was stage 4 and she recommended a Mediterranean diet for long ter and to get upwards of 90 grams of protein a day to hep my body heal
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FaithHopeCourage, I get rib cramps too. Not as much now, but after my surgery it was pretty bad for maybe a year? I am supposed to have a met in that area, but I have no idea if it's connected. I also get feet and leg cramps, and I don't have any mets there.
DecisionFreak, I feel for you! What does your mother want?
To whomever it was who mentioned different side effects from different brands of tamoxifen...thank you! It's only been 10 days since I switched to another brand, so it might be a bit early to tell, but it seems as if I have serious improvement. My right knee had become so bad that it was interfering with my ability to walk, and I got an xray a couple of weeks ago just to rule out a rogue met. (still waiting for the report, if you can believe it!) I'm still babying the knee...walking downstairs onto the right leg with the left doing all the bending, that sort of thing, but it seems to feel much better. How long did it take you to notice an improvement? Anyway, I would never have thought of it on my own, so I'm very grateful. At the beginning they switched me back and forth according to what they had in stock at the pharmacy, but for several months now it had been the same brand and the knee has been getting worse and worse. Oddly, my night sweats seem to be back again, but I'll take that in exchange for being able to walk!
After 10 months, they have finally diagnosed my bad tooth. I was given the choice of root canal or extraction, and I've decided to try root canal first, as it carries fewer ONJ risks. The specialist said it's straight-forward looking, so I can get that done at my regular dentist and I have an appointment on Tuesday. I'm looking forward to that relief! It had become so bad I could barely open my mouth to insert food (no problems talking, however!
) My breath will improve. I might even be able to chew! Wow! :-DI'm so ticked at my oncologist. So, she decided I could get Xgeva every 3 months now, and suggested I get it at the same time as our appointments. Okay. So she made an appointment for me for March 1. I made the xgeva appointment. Then she changed the appointment to March 22...okay, she works hard and deserves a holiday as much as anyone. So I change the xgeva appointment. Now, a few weeks ago, I called her office because I didn't have a CT scan appointment yet. I explained that I was going on holiday for two weeks in the middle of April, and didn't want our appointment switched because of the lack of scan. Nudge, nudge...book me a CT scan. Two weeks later, the secretary calls me back. They have requested a CT scan at the beginning of April and my new oncologist appointment is right in the middle of my vacation. Hello?? When I explained tagain hat I would be floating down the Rhine at that point she suggested the next week. So, now I'll have scanxiety all through my vacation. So ticked. Why can't they just book the CT scan when they book the oncologist appointment? Also, I don't think it's just a great idea for me to wait until month for my shot, so the nicely synchronized schedule is shot to hell. And why can't I get an MRI or something so they can tell me if there is any improvement in the spine mets?
Thanks for letting me rant. I'm really unhappy with the lack of attention. I know that someone in my position has a great many treatment options available, even if there is progression at some point, but I think the key is knowing quickly if there is progression, isn't it? I'm not sure how they'd be able to tell. I only get non-contrast CT scans from shoulder to pelvis. No markers, no PET, no MRI, no bone scans. I get blood work before my xgeva shot, but since my bloods were perfect even when I was diagnosed, that doesnt help, either.
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we saw a nutritionist. Too tired now but will try to post tomorrow. Basically turkey, and fish (salmon and tuna and sardines) and spelt bread, pasta and crackers..
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Milaandra I can so sympathize my oncologist is driving me crazy with her attitudes. So I have been going through pre trial hell. I've had two ct scans and two bone scans in the past three weeks ( that can't be healthy) tons of blood work I'm totally bagged. Then I get a call from the trial nurse that my estradial levels are too high so I'm now not eligible for the trial at this time. My oncologist thinks it was high because of the tamoxifen and wants me to redo everything and try again to get on the trial. I am totally pissed maybe they should have done this blood test last summer to determine if the tamoxifen was the right drug in the first place obviously now it wasn't. So now I have been over a month with no treatment but I've ridden the radioactive train the whole month. I even had a muga scan who knew. So now I will discuss my option with my oncologist on Monday do I want to wait another two weeks and maybe get on the trial or just get on an AI . I don't know what to do would an AI even work if I'm not entirely post menopausal? Do oncologist get any monetary gain from bringing patients to a trial? Wouldn't surprise me at this point she has to pay for her Christian Dior suits somehow...
Rachel your family is beautiful your daughter does reall look like you.
Jen as you can see from above I have had literally no medical help for a year basically. I feel great I go to the gym everyday and I have drastically changed my diet. Juicing is very important ( lots of carrots) no sugar etc. You have it right. I also started a maple syrup baking soda therapy to alkaline my body. I will be doing everything. Also apricot pits for the B17 eaten together with pineapple which contains something that starts with brom.... Anyway that's supposed to help as well. There is a tone that we can do personally to help ourselves.
Wendy
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Wendy, I can't believe that you have been told so late in the game that you do not qualify for the trial. You must be feeling so many emotions including anger, confusion, disappointment, bewilderment, and on and on. I am so sorry. I hope that you are able to get on the trial very soon. Ugh! I am SO upset for you. Whatever decision you and you onc arrive at, I hope it kicks that cancer right out the door.
Rachel, what a beautiful picture of your family. You are wise to include all four of you in photos. I often laugh when I look through photos here. It seems like all the pictures are of my kids. There are some of my DH, too, but I was usually the photographer, so I was invisible. If you do attend the conference in April, I hope you tell us what you learn. We will all be anxious to hear about and new avenues for tx, etc.
Milaandra, How annoying to have your appointments changed so many times, especially when they are made for dates during your vacation time. It is quite insensitive for them to do that to you. I hope you get it straightened out soon and that you don't have a huge gap in treatment dates.
Mom, I don't think anyone mentioned carbs, but my bs is big on a lower glycemic diet, not as low as a diabetic would follow though. The thought is that carbs can contribute to inflammation and feel cancer cells. I happen to love carbs, but I have cut down on them. My onc, on the other hand, recommends low fat and no (or few) processed foods. That just makes sense for everyone, I think.
Good night, my friends.
Lynne
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Hi ladies,
I had the funeral today and it was nice to see so many family members. We all agreed it would be nice to meet up for something other than funerals so we are hoping for a family reunion in the summer.
Rachel, I saw lots of photos of the Philly conference on FB and I swear I saw you in the background of one of the photos with another young couple- I know the female on FB and she is another young mother. If it wasn't you, I apologize.
I'm very tired but wanted to say hi to all you ladies...
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Rachel love the picture, your daughter def looks like a mini you.
Bosco hey nice to hear from you. Yep fish is def on the chart, flounder? Is that ok?Then she would like to fry it. Someone just told us NOT canola oi as we thought for the longest time, but Coconut oil.Feel better soon.
Milaandra your experience is like falling through the rabbit hole. Is anybody there?? What's with these people. What if you were to call yourself and see if you could get an appointment earlier, is it possible in your neck of the woods? Too much stress, that's for sure. I can only tell you that the people I know either had bone scans, or PET/CT sometimes at least, and or MRI. They are different modalities, but absolutely no base TM's or base MRI or PET/CT for me in the States, it's strange.
Wendy oh, the above note goes the same for you. Are you kidding?? They could have made things easier by doing their homework, first your MO and even the trial people. They had your paperwork, they knew you were on Tamoxifen. So unfair. I know it's hard decision, but if your instinct guides you one direction then maybe this is it. Maybe your MO could guide you, warm hugs! You were so excited and psyched up. What a shame. Apricots pits who would have thought? Wendy how do you prepare your mixture of maple…and what you eat that? Or pour it on something delicious?
Jen yeah, so basically give up the good stuff. Around my house we always watched our food, but I wonder if actually not eating chicken, meat and all the stuff actually makes a difference. Like, how long would something have had to be in the body to actually affect someone? And are the meals still enjoyable? Dani is not so much into grassy stuff. Does it really help, I am not talking about eating fatty stuff galore, but in moderation? Not fatty, just not all so dietetic. We were looking at labels, everything has something that's not good. Put the whole family on organic? You think? Like organic milk? Organic chiken? Whole wheat bread? Is that a choice? How are you doing?
Lynne the problem is that Dani is really very petite, Onco is concerned she is not taking enough food!! She is worried about what to eat, she was told she needs protein for sure, and Onco doesn't even want her to watch herself, but she does. So it's a bit of a challenge, to eat well and enough and enjoy!
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Does Dani do protein shakes? A really high quality powder can give her 20 grams per serving. My challenge is making smoothies with more veggies than fruit though. Might be a good way to get some fatty almond butter into her too. Sun warrior is a protein powder brand the oncology nutritionist approved for me.
Is it enjoyable? For me, no lol. I have my cheats - Lily's chocolate bar is made with stevia and gets my chocolate fix. Not sure if it's actually better though. I go for 80% good, 20% other - although my cravings stay away if I stay good 100%. I'm in the middle of TC chemo right now so I let up on this on days that nothing tastes good.
I'm not doing all that great right now. I have finished four rounds of chemo and have 2 more to go. And then surgery I think. I'm frustrated that I don't have a treatment plan in front of me. My MRI showed some slight shrinkage in individual masses in mY breast but not what we'd been hoping for. And I don't know the receptor info for the bone met because they botched the biopsy procedure. So I feel a bit hapless. I'm not doing anything else treatment wise but I feel like we should be shutting down my ovaries and doing other things to control this junk. And I just don't know what to expect and that such a vulnerable and uncomfortable position to be in. Thanks for letting me vent. I'm terrified of being the patient that didn't advocate hard enough and pays the price. I am a recently single mom with a 6 year old and all of that is too scary to talk about
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Jennifer, very sorry for the situation you are in. I will come back to write more tomorrow (it's very late here in the east). Just to let you know that you are heard and in our thoughts. Your feelings are completely understood here. Hope you have some good sleep !
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Oh Jennifer sometimes things just suck I'm so sorry there is always hope however. I hope you have lots of support from other friends and family . I would think that having a younger child in would motivate me even harder to beat this or at least to NED and you sound motivated. I will be going to my oncologist on Thurday and demanding some kind of treatment now sick of waiting. I feel like I'm trying to stop the spread of this all on my own with my snake oil ideas.
Momallthetime my husband is a physicist and he originally said the whole alkaline thing was bogus he's not saying that anymore. By making your body more alkaline it makes it easier for your blood to transport oxygen and well as creating an environment where cancer doesn't like to grow. I heard about this from a fellow whose wife was sent home with several liver mets as well as bone mets the doctors were done. He started doing this maple syrup baking soda thing and her tumour are all shrinking and her TMs have come way down. So it's six tablespoons organic maple syrup and two tablespoons baking soda heat together to 120 degrees stirring constantly it will foam up not to worry. So the theory is that by binding the alkaline baking soda with the syrup we create a deadly food for cancer. Three tsp a day morning noon and night. I started doing this and all my pain is gone I was having shoulder , rib and back pain. So it may sound crazy but it's cheap and easy to do at least worth a try...warning it's very salty and hard to swallow keep a big glass of water near.
Also momallthetime there are tons of healthy recipes out there which make transitioning to healthy eating sustainable. Check out Kris Carr's crazy sexy cancer website she has some really good low glycemic recipes on there. You get used to no sugar I tried some dark chocolate the other day because someone told me it contains the same sugar as a banana and that it's good for you occasionally. I couldn't eat it found it way to sweet it's good I have two teenage sons willing to step in. So my tastebuds have totally changed already.
Wendy
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Good morning all,
Wendy - OMG! I hope you can get this sorted out at your MO's appt tomorrow. I'm sure you have your list of questions ready. What would we do without this site and the wealth of information we find here. Will be thinking of you tomorrow.
Bluefrog - love all your photos including your dog! I'm also a dog person.
Jennifer - sorry you're not feeling well - sending you big hugs.
Patty - how are you sweety?
Bosco - good to hear from you.
I'm also ticked off, no news since January regarding allergy testing for dye contrast and CT scans. I will get on phone (and be patient as speaking to a human takes about 45 minutes) to follow up. I need to get this sorted out as my next step may be a clinical trial and can't picture myself not being able to have adequate CT scans. And I'm also ticked off because the MO replacing mine on mat leave wants to limit radiation and doesn't want to follow my regular screening schedule. But then I walk out of her office with a request for a back scan, chest x-ray, pelvis and femur x-ray. Duh? Wouldn't it be simpler to do a CT for the whole thing?! But no, she doesn't want that, wonder if it's a question of costs. Seems to me the amount of radiation is the same. And the incompetent radiologist who was supposed to leave one year ago because of so many mistakes on so many patients including me, is still working and now limited to reading x-rays only. Didn't think I would rant this way today but it feels good.
Sending hugs all around.
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Wendy, when I was first diagnosed they tried to put me on an AI inhibitor. I had a couple of boxes in my hand, when the young doctor who was going over things with me happened to notice that I hadn't gone through menopause yet and whipped them away. She said that AI inhibitors can be used in pre-menopausal women, but then the ovaries need to be suppressed.
If tamoxifen isn't working for you, then they can put you on an AI inhibitor, but make sure they give you the suppression shot..
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Linda, sometimes we all need a good rant!
I have heard that xrays, MRIs, CT scans...all show things differently, and something that was missed on one can show up on another. So this oncologist may want a different viewpoint. Also, don't xrays need less radiation?
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Jen, lots of us don't have a biopsy on the mets. I gather that it's extremely common with mets off the bat. They are usually the same as the primary tumour.
Don't worry too much about the chemo not working beautifully. I'm sure you're only getting it because you're so young. I didn't have to get chemo at all.
I'm 95% certain they'll slap you on tamoxifen. It's usually the first line of defence for hormone sensitive They'll also likely put you on a bone drug...push for xgeva.
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Thanks Milaandra I will have a long list for her tomorrow 🤔
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Milaandra - you're right about the different imaging. I confess I exaggerated my pain in cervical and thoracic spine to have a CT scan because on my MO's first mat leave, I had the same replacing Onc and she waited more than 6 months to scan and new bones mets appeared in spine during that period. Rant and confession today...
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