Bone Mets Thread
Comments
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Lynne,
I didn't have Zometa, but rather Aredia, however they are similar. For many, the first infusion is a bit tough as you may have flu like symptoms. Lots of water is definitely helpful. I didn't have a difficult time, except for the one instance that they sped things up and I made sure they never considered that again. I have never had chemo, but from what I read, the bisphosphonates are far easier. Remember these are bone stengtheners and many people take them for osteoporosis, so although some se's may occur, it's generally well tolerated. All the best!0 -
Caryn,
Who EVER said this is a contest? My mets are worse than your mets? Seriously, I think we've moved past Junior High don't you? You are so very welcome here and anyone who disagrees ought to shut up, listen and gain from your wisdom.
Amy
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Amy,
I agree with you, but, sadly, others don't. Besides the expletive laced pm's, a well liked member publicly posted that perhaps I didn't belong here and should start my own thread. She later deleted the post, but not before I read it and felt the sting of her arrow. I have MBC, just like all of you, and I really enjoy most everyone here. My best to all and many thanks to those who accept me despite the fact that I'm doing very well.
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Amy you are so funny. Who was it that said how horrifying it is to figure out that in adulthood it's still just like high school.
Lynne - I think this was mentioned before to you, but just in case, make sure your dental work is all done and teeth are perfect before you start infusions. I didn't know that and ended up with ONJ, which is really painful.
Good to see you here, Caryn.
Glad you feel better today Deanna. And you too LindaE.
Adjustable bed sounds wonderful. I have a sleep number bed and it's decent. But only can adjust soft/hard part.
Well, back to work!
Hugs to all,
Terre
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Thanks Terre and Caryn for the diet suggestions. Of course it is difficult for me to bring healthy food into this house. Mom insists there's no room for it, and she refuses to eat it herself. However I guess it ultimately doesn't matter. Have a good weekend. It's good to see you, and I miss the MIAs.
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Hi dune,
Well, you know I don't believe that diet alone can cure cancer, but diet can make you feel better, so, it can matter. I don't know what your mom's diet consists of, but making healthy choices, little by little, doesn't mean anything extreme or weird. It is sometimes difficult to change eating habits (or any habits in older folk), but maybe, little changes here and there will be acceptable. Take good care.0 -
thank you, Terre. I am having the last of my dental work completed this week My MO made sure I had it done before the Zometa treatment begins. My dentist couldn't say enough about how happy he was with the MO's. insistence that dental work be completed first. He said some docs don't tell their patients.
Lynne
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Deanna how are you doing today? The pain any better? Thanks for the update on Patty - best wishes she should feel stronger again.
LindaE - someone posted this http://www.nytimes.com/2015/09/06/opinion/sunday/a... I thought was aproppo to what to your conversation. It's hard when you like the nurse or doc and still have to keep an eye as a hawk.Consider yourself lucky, some of these infusions could be really hard. It's almost impossible for the average person to protect oneself all the time.
On the last Pet/Ct for my daughter, Onco didn't mention a/t awry, then i looked at the report and saw that awful nodule with the report saying "significant" increase...AND she hadn't even noticed it, she just read thru the findings quickly, but then it was in the findings also, so all I could say it that it was overlooked. That is one of the reasons I feel so cynical about her recommendations, and then she had a bit of a tantrum when I asked what she would do about it. Forget about the rest of the stuff, that only after I called she told us to see the Rad. Anyway, we are getting 2 other opinions this week, so we will see.
But, I called another very well established Onco in a major NYC hospital,(not the one we are visiting this wk) and this Onco has been following Dani's stats, I expected an email back bcs she is so busy and known as a BIGGIE, anyway she came to the phone and said yes she would just leave it like that and that our ONCO is very good< like how old are you??? Did I ask that? Did I even mention a/t to say she isn't? I read about the "white wall" of docs, nurses it exists just like the "blue wall" of police. I could not believe my ears, I told her i was calling to hear HER opinion, our ONCO is very good but she is just a person, AND i was looking to see if there was another view to the situation. We have no problem going to her for a visit, I think then she MIGHT be saying something else, BUT to just endorse another doc, like patting us in the back is downright wrong.
For those that like to be in the know of the medical world, it's not for everyone, I do like to know, anyway I read tons of these books, and I just finished Robert Wachter's:Internal Bleeding: The truth behind America's terrifying medical mistakes and Atul Gawande: Complications... many more like that, a lot to learn.
Annie thx for your good wishes.
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Good morning all,
Mommalthetime - Frustrating to say the least. I call it the medical mafia. Sometimes I look at all the cancer patients at the hospital and sometimes chat with some of them. So many of them don't even look at their medical reports and trust their docs as if they were Gods. And God knows I have a few errors to report. Anytime I have a chance to talk about Dr. Incompetent Radiologist, I grab it. In fact I make it a point to talk about him to the cancer patients. He saw mets where I had none and did not see the existing ones etc, wasting precious time of the medical team surrounding him who try to limit damages. My Ortho is very candid and told me there are numerous mistakes by Dr. Incompetent. Still alive and kicking and working in the hospital but now just reading Xrays so they say! When I told the Onc I had at the time that I do not want him in any of my results/reports, she replied "well you know, that's kind of hard to do". WTH? I told her, just make sure he's not involved. Gets my blood boiling. Praying you next opinions bring clarity.
Patty - If you're lurking, know that you are always in my thoughts and prayers. I miss you.
Annie - hoping to hear from you soon. Haven't see you around the last couple of days.
Deanna - hope you continue to feel better. Went for a nice longer than usual walk last night (with running shoes and cane) and slept like a baby.
Sharon8 - how are you doing?
Terre - any news yet on the house? Hope that stomach flu is a thing of the past.
To all a good labour day and hugs all around.
Feeling much better this morning. Still coughing a lot but feeling like myself again.
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Good Morning All
I read this thread everyday and simply don't ever know where to start with a post, because I often end up feeling overwhelmed. Overwhelmed and sorry to hear that many are in pain and struggling/striving to get meds 'right' and get proper care. And overwhelmed for myself too ( sorry if this part is selfish) because I've never had to interface with Western med about anything really ( yes I know I am blessed) but here I am now with a big glacier moving toward me.... So many questions like should I have my scans read by another person, to feel safe. How do i KNOW if what I am feeling in hip is just achy or a pain that I should have looked at ( I question because I have a high threshold for pain). My MO says if pain we can do rads... but I'm having fear if something could fracture before I sense pain... mind swirling obviously. thinking I should just request a closer look- so would I ask for MRI or xray.... so many questions
Sorry to splat everything. I am thinking of ech of you even though I am not addressing at this moment.
I do hope everyone is having as easeful a weekend as possible.
Hugs
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good morning all
oh. gaia it does get better. The worry can be all consuming. You seem so wise and have so many skills they will work for you again once this period of shock subsides.
50s girl I felt miserable on my first Zometta for 3 days, second Zometta for 2 days. Now typically no SE at all unless I forget to hydrate. There are some research articles out there showing zometta does reduce terrible bone problems and help some pts live longer.
Caryn glad you are here, and I think your voice is so important especially to newly dx
Amy you make me laugh.
dlb my bathroom will be a greyish blue. Unfortunately dry wallers have not finished so hubby and I will have a long night of painting this week. I bought. this house 10 years ago and it had a 1970 s hot tub in the master bedroom and no real bath tub. I cant wait. for the project to be done. The bath is oriented so my lymphadema affected arm can hang out of the hot water.
Happy labor day all
Mary
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Had a lovely couple of days with my daughter this weekend. We did some shopping and went to a movie. Saw A Walk in the Woods which was really good. Doing that road trip by myself took a toll on my energy but it was totally worth it! I miss my girl and enjoyed my time with her so much. I'll be spending labor day doing a little R&R... my arms and legs are extremely weak right now which I guess means that I probably overdid it. Extreme muscle weakness, fatigue and a very achy rib cage equals a day of pampering.
Has anyone tried adding Bone Broth to their diet?? I read an interesting article on how that can help restore bone health. Was thinking of giving that a try. I'm going to try the pumpkin powder... sounds easy enough. I eat a lot of nuts so I can definitely add pumpkin seeds to the mix.
I'm still trying to get to know all of you... it's hard to keep up because I don't log in every day. But, I have all of you in my thoughts and prayers and I hate that so many of you are in pain. I hate how unfair this disease can be.
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Hi Chattycat. For what it's worth, I think bone broth is one of the most nutritionally viable things anyone can easily add to their diet.
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Chatty I second and third and fourth leggo- bone broth is So Nourishing. I've been making my own for years and I do believe, even though I've landed here, it has fortified me in many many ways.
That kind of leads in to that earlier inquiry from Dune I think about diet.... Obiously a diet made of 'non-foods' like processed foods would not be ideal for anyone in any scenario- yet as I believe several us here can attest to, neither does a relatively 'impeccable' diet ( local and or organic food, no preservatives, mostly hand made) make one immune to dealing with health challenges. I think the important to focus on is actually eating a WIDE variety of all foods and preferably with as little processing as possible....and maybe most of all taking real pleasure in eating and everything we can like family, friends, solitude, naps, walks, baths, sipping tea......
PS..... I would eat the pumpkin seeds and not take the powder.... real whole food is my bottom line that's just my perspective though.
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Gaia - My last post may have upset you - I apologize if it did. You are so new to this. You just recently had a PET and CT and have started tx. You're doing everything right. Do keep all copies of your reports and stay proactive and informed. Some of us went for a second opinion at dx or later on. If you feel more comfortable having a second opinion, go for it. I did and it reassured me that the tx plan was the right one and that gave me peace of mind. If you are having new or worse pain that lasts for more than 2-3 weeks, contact your Onc to see if out of routine imaging is required. Rads have helped me very much with pain relief as for many of us. If your Onc suggests it - have a consult with rads Onc and go from there and decide what you want. Remember, the first few months are a roller coaster - it will get better. And don't dwell on where to start on your posts, just spill the beans LOL. Sending you lots of hugs.
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Thank you Linda and 3-16.
Linda you didn't upset me... it's just the WHOLE thing. As I am sure you and everyone here appreciates, it's overwhelming. And yes I do continue to need to remind myself that this is just the beginning. And I am probably also anxious with anticipation about the herceptin infusions.... just being hooked up etc. My mind is definitely unruly and not resting in the moment very well.
Above all I am grateful to have found bco and the various threads here and this one of course to have a place to vent, reflect and share.....
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Lynne, I had severe reaction to the first dose of Zometa and ended up in the ER due to violent shaking, short breaths, and high fever (I thought I had seizers, was not aware of the high body temperature, just felt very cold). My onc told me to take 2 Tylenol and 2 Advil together before the infusion and keep taking them every 6 hours after the infusion for one or two days which I am faithfully doing. Have never had any incidence since. SE is minimal for me. I believe Zometa is very helpful, for my bone pains are becoming milder. Good luck with your Zometa treatment!
Momal, so understood your frustration with the doctors' world which is simply not always on the same page with our patients' world. Hope the 2 more opinions could help your Dani more. LindaE, good for you to find the radiologist incompetent.
LindaL, I also bought an adjustable bed after my diagnosis this spring which is facing a big window, thinking I would be using the bed a lot looking out from the window because I am dying. Sad to begin with, but happy that the bed is helping me so much with the cancer plagued bones.
All, have a good day!
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Catty, Leggo, and Gaia, thanks for the tips of Bone Broth and whole pumpkin seeds. I am going to check them out. I believe good diet at least will help building a better health which is an important factor in wining our long term survival.
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Linda, thank you for motivating me to get my sneakers and back brace on and get out and walk this a.m. It's already 96 here, so I didn't go far. Plus every step was an effort due to pain. But I figured I'm never going to start feeling better if I continue to sit around as I have the past few weeks, so am happy to report I got about a mile in and will aim to do another mile when the sun goes down. Baby steps...
I'm glad someone brought up bone broth. Am I the only one -- especially since I stopped eating meat -- who wonders about cancer cells in animal bones and marrow? My thought process goes something like this... since it takes several years for cancer to be imaged and dx'd in humans, how can we be sure cattle, for example, aren't the same -- cancer cells in their bones, but not yet visible to anyone? Sorry if I'm ruining anyone's lunch, but this is truly why I have hesitated to get on the bone broth bandwagon, and I'm wondering if anyone else has had similar doubts.
Chattykat, I hope you recover quickly from the long drive, and hope you can do it as often as you want or need to in the future.
gaia, excellent diet advice. The other thing that may have already been mentioned is not to believe you have to go from 0 to 10 (in terms of healthy eating) all at once. An excellent book for anyone wanting to make some simple changes to up their nutrition is Andrew Weil's 8 weeks to Optimum Health. Check it out. Very simple changes that will lead you to a much healthier diet. DH & I did it years ago, and it was very helpful at the time. I know it's hard to change your Mom's way of eating, Dune, but if she's not making a salad, for example, maybe you could add a delicious one to dinner every night. You could eat more of that, and maybe she would start enjoying some too. I hate to think of her inadvertently sabotaging your health, and hope you can find ways to tweek what you're both doing if you know in your heart you should be doing better.
Wow, Xavo, what a scary reaction to Zometa! Do you remember if it was run at the proper, slower infusion rate?
MomATT, I so feel your frustration with Dani's onc and the one who supported her. At least you found out over the phone and didn't waste time with an appointment with that alternate doc. But, wow, how frustrating for you.
Happy Labor Day to all!
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Deanna, no you are not the only one that thinks that. As a matter of fact, when I was diagnosed, I was breastfeeding my son. After I got the diagnosis, I seriously fell to the ground....not because of the diagnosis itself, but FREAKING out that my baby was drinking all those cancer cells. The onc tried to reassure me it doesn't work that way, but I never really bought that theory. Why not cows, chickens, pigs....whatever? I eventually rationalized that a cancer cell, just like the world's most minute bacteria, can't survive a long boiling. I could be completely wrong but it was something I needed to know and my family physician agreed...nothing is going to survive a 12 hour boil....I hope. Doesn't help with my baby "drinking cancer", that will always make me nuts, but I'm quite confident with the bone broth.
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Gaia, my hip hurt so bad when I first was diagnosed. I couldn't walk up the stairs and cried changing my clothes. Once I started treatmetn of TH&P plus zometa. It began to feel better. I have had 3 treatments and my hip feels good as new. No pain. So I would say hold off on rads and wait to see if your meds work.
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Thanks Txmom
I had NO intention of rushing into rads.... I do plan on being here for the Long Long haul, so I want to be as conservative in rx as I can be, BUT I also want to be mindful and since this is a whole new world ( filled with landmines) I will definitely be wanting to hear about all experiences.
My MO def doesn't want to rush into rads, he just said if pain becomes too high ( and right now I do not have pain, just achy and suddenly hip feels weak...stairs are step by step)- then we can discuss rads.....
Anyway I really thank you all for all of your input and I hope everyone is managing SE's easefully!
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Hi all,
I get a bit overwhelmed trying to keep up with this thread too! Gaia, especially when the dx is new (and even later), it is "just everything". It does get better.
Lynne - glad your MO is on top of it! Mine didn't tell me. Another reason I switched MOs.
Thanks for the diet book recommendation, Deanna. I'll definitely look into it.
Momallthetime - how frustrating! My mother's oncologist said that if we wanted to get a second opinion that he wouldn't see my mother and would dump her as a patient. Arrogant jerk. There is a "white wall", but I have been lucky enough twice (Stage I and Stage IV) to find someone in the medical professional willing to help me find another doctor and get an honest second opinion. Don't give up!
Sorry for everyone I'm not addressing...can't scroll back, unfortunately. Will try to catch up later.
Hugs to all,
Terre
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I am amazed by the resistance to second opinions. My MO suggested other medical facilities to go to, copies of all the scans and reports, and my full file. I'm surprised she didn't offer to drive me herself. Her transparency is one of the reasons I like her so much.
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Terre, your mother's onc's reaction to the suggestion of a second opinion shocked me. I thought second opinions were encouraged, but that is obviously not the case for all doctors. I don't know if that is insecurity or arrogance, but either way it is unacceptable.
My daily walking plan didn't pan out today. My DH and I went to dinner at my son's house, so there was little time for walking. It is quite hot out now. I ate way too much, but it was delicious. It was fun to spend time with one of my sons, daughter-in-law, and two of my grandchildren. I will resume my walking routine tomorrow since I know exercise makes me feel good.
Xavo, your reaction to your first Zometa infusion must have been frightening. I am glad that you no longer have that experience with the treatment. I am allergic to Advil, but I will definitely try the Tylenol. I really want to avoid as much discomfort as possible.
Have a good night everyone. I find all your advice and opinions to be helpful. Mbc sucks, and I am happy to have found support here from people who understand this wretched disease
Lynne
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Hi,
One thought per post...I do feel brain damaged sometimes. Lynne - back quite a few pages, someone also suggested taking a Claritin (or similar) prior to the infusion.
It may help!
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Terre - thank you again
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When I asked my onc about getting a 2nd opinion, she arranged it for me. They have both been greet.
Ive been taking a half dose of the steroid this week. Today I had considerably less pain and accomplished a lot. Then the pain came, around 5-6 and steadily grew to a groaning moaning 10. Oxycodone and ibuprofen helped enormously. I thought I'd be in pain for the night, but I'm pretty good now,
Tomorrow is a hugely busy day. RO consult very early, followed by 2-3 hours chemo, followed bt picking up rx and talking to the guy in charge of copy and print at office depot about the poster for the reunion. Today I painted 2 dollar tree wine glasses with a picture of our cute little mascot tiger, boughs 2 nice bottles of wine, went back because I forgot to use the 20 percent off coupon, then baked the glasses for 30 minutes so the sharpee adhrres well, then created a bag to make a good presentation for the the wine and glasses. It's a good raffle item. Then I made good progress on getting the background music ready.
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Sunset tonight. The whole backyard was bathed in pink. Thought we could all use a little beauty. Good night all.
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Beautiful sunset! Thanks for sharing it.
Dune - you are a marvel and you never fail to amaze me. Take care of yourself.
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