Bone Mets Thread
Comments
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Good luck tomorrow Annie, hope your infusion goes well.
OMG, I love this!! Thank you readingmama for posting this & Caryn for pointing it out to me again, I somehow missed it in the original post. This may be my new mantra!"Don't let the disease rob you of your life before it robs you of your life."
Good night all... Cheers, Dee
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Thanks for all the kind thoughts, everyone. It really helped me to write about Bob, so thanks for the forum and for "listening".
Annie - sending good thoughts to you for your infusion and results. Let's chant/cheer together: stability - that's for me!
Beautifully said Romansma....
I'll be back to being comic relief tomorrow.
Hugs to all,
Terre
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Terrestrial Terre, Bob is inspiration.Listen to Dee's advice and raise a glass of wine and piece of chocolate. Good luck on the CDK4/6 inhibitor. Another weapon in the arsenal. How great is that!
Sharon Yep. Live Love Laugh. I bought that cheap, cheesy necklace in December and it is the one I wear everywhere. I bought a nice chain for it and every time I put it on, feel it, see it, and take it off I am reminded of what I need to do. "Mope" is not on that chain.
Annie, good luck with your 5th infusion, and I hope your bone scan results are very good. It sounds like you have a very busy day tomorrow (later today). It looks like I'm going to be tired as can be, but I only have to see the shrink and Trader Joe's. I am (OMG) out of espresso!!!! That's my version of wine and chocolate.
Skylotus, I am looking into the possibility of getting vitamin C infusions. I need to figure out if it will do any good if I only do it once a month. They called back tonight and told me They charge $160 for grams. It would be about $120 for 25 grams, which is where I would start. They have a lady doing 150 grams twice a week. Well ..................... good for her! LOL
ReadingMama I agree we should not let cancer rob us of life before it actually does. I haven't quite gotten there, but I am working on it.
I received my PET scan results in the mail today. It's pretty good. Nothing in the organs. Lots of bone mets improved or stable. However, some new ones showed up. They called the treatment results mixed. I was pleased with it.
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reading mama - well said !
Terre. - so very sorry for your loss of Bob. I agree choc and wine is in order.
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Dune - great news on the scan. Sorry there's more bone mets, but overall, what a great result!
Patty - you're so right. Thanks for the kind thoughts.
Hugs to all,
Terre
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I finally saw my PET scan report today online, in my opinion it is better then stable. I guess that is what they have to call it, unchanged is what it states but yet all of the SUV's are lower this time and there are less active bone mets. Is the Protocel? the femara (which was loosing it's effectiveness beginning last Spring? or a combination of everything? I don't know. Best wishes everyone.
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WHOOO HOOOOOOOOOO Music Lover!
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That's great news Musiclover, so happy for you!
Kiwi, so sorry for your loss. Your friend truly was an inspiration. We all hope for something to happen that will allow us to die of a freak accident sometime MUCH later in our lives. Good for him for living life to the fullest!
Also, thank you for posting the update on the new drug, Palbociclib. I've been watching this one and would much rather be on it than my current Xeloda. However, I will try to reserve judgement until I know the effectiveness of Xeloda for me. Just not a lover of rat poison. Seems so much smarter to have targeted treatments. But, what do I know!
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Woke up this morning thinking "This may be the last morning in my life when I don't have cancer meds in my body," and felt sad, but then I felt gratitude that there are drugs to take, so it's all about perspective, isn't it? I had my first injection of Exgeva this morning, and have to go to the drugstore yet to get the Aromasin and Ativan, but I got a little delayed. Right after I left the cancer center, my front tire went flat. Really???? It must have been affected by the extreme cold here right now. It took a long time to get through to AAA, but they came out in less than a half hour and I was soon on my way again, so it's all good. The hospital finally came up with the info on my stent, so I'm cleared now for the MRI Monday, the last scan for a while I'm hoping. I don't have any more labs or doc appointments for a month, so now I feel like I can find some new normal to settle into. The nurse today told me about some services at the cancer center that I didn't know about -- reiki, counseling, nutritional info, etc., all at no cost to me, so I was happy to learn about those. I've had reiki before, so I signed up for that right away. They really offer a lot of resources, so I'm grateful for that. We're exploring a ketogenic diet -- virtually no carbs, as they turn into sugar that feeds cancer. Anybody done anything like that? Any thoughts? It's pretty strict, but it's my life, so I'm willing. MusicLover, you mentioned Protocel. I first heard of that years ago when I was first diagnosed. Do you feel it has helped you? I actually had a bottle back then, but was then advised not to take it before my surgery, and then I just ended up not doing it. It's hard to decide what to do besides what the medical people tell you to do. My partner is a massage therapist and operates a wellness center, so we're open to alternatives, but many people have many different ideas and suggestions, and I could spend the rest of my life chasing those. I have told Rebecca (my partner, soon to be wife) that I will not chase after everything suggested. I don't want to live my life that way. That would mean cancer runs my life, and for as long as I can, I won't have it that way. Now I have to go get my tire fixed, and I'm happy to be heading out to do something that normal! Thanks for your support, and I send hugs to all, especially those of you having a tough time or doing new treatments. And stay warm those of you who are in this deep freeze!
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Sharon8, All too quickly this will become the new normal. I've been at this for 6+ years now & it's hard to remember it not being like this. Not that's it necessarily a bad thing, I'm glad that if I got cancer it's at a time that there are many treatments available. One of my previous onco's said that in 10 years time we will be horrified by some of the treatments we were giving patients. I hope he's right, that there will be new & less drastic means by then & hopefully I'll be around to "enjoy" them.
DH & I eat low carb. It started when I had anemia quite badly & the Dr suggested that I try eating more meat. We didn't eat much at all, so we decided to try cutting out bread, pasta, rice & potatoes. I lost 25 lbs & DH lost about 10 that he couldn't afford to lose. We aren't as strict as we were because eating out is one of our pleasures & it makes it difficult if you're on a strict diet. But all my joint pain is gone, I'm down to a single digit dress size & I feel much better for eating this way. I still make homemade pasta as a treat & every once in a while we treat ourselves to some french fries or something like that.
Musiclover, congrats on the good results! Cheers! Dee
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Momonana6 -- I know Wauwatosa well! Bayside is a suburb north of Milwaukee, between Mequon and Fox Point. Things haven't changed. It's super cold today, schools closed, etc. My sister moved to Florida last May, and I do wonder on days like this why I am still in the frozen tundra! Pittsburg isn't exactly the tropics , though! This last year, we were cooler than normal even after winter, so the cabin fever became kind of chronic! But it seems every other place that interests me is either on fire or flooding half the time. Guess I'm staying here. Just takes longer to dress on days like this!
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Thank you all.
Sharon, Best wishes to you.
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Great news, ML! And happy for your results, too, Dune!
I didn't realize until late last night that I had somehow dropped this thread from my favorites list. I thought you all were being awfully quiet, but now I see I have 2-1/2 pages to catch up on! I did see your post, Terre, about your friend, Bob's, accident. He sounds like such a special friend and inspiration. I'm so sorry. Not too long ago, a friend gave me a thought that I've found comforting at times like these, and even for our own situations -- which is that no one can subtract or add a day to God's plan for our lives. I realize if you're not religious or spiritual, this may not speak to you. But just the way she worded it has given me a lot of peace in recent weeks, and I hope it may ease some of the pain of your loss.
Hugs to all! Deanna
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Thanks, GG27. We do love eating out, too, and I suspect we will take a break now and then, but we'll start out being strict. We can both stand to lose weight, and low carb is the only way I seem to lose anyway. We'll deal with it. I liked your comments about future treatments. When I was first diagnosed 9 years ago, I got a second opinion, and that doc said they hardly do any chemo in Europe because it's considered pretty barbaric, and I really felt that way, too. That was part of the reason I declined it then. I'm hoping I don't have to go there and that other treatments keep me going well enough without it. Back then it really was the only part of the whole cancer diagnosis that scared me. I felt sure the cancer wouldn't kill me then, but the chemo felt dangerous, so after surgery I took my tamoxifen and went on my merry way. I don't regret my decision a bit, and I realized even then that this is an intensely personal decision, and I would never judge anyone on those choices. I had lots of people thinking I should do this or that, but in the end, I did what I felt was right for me. No regrets. I've had 9 good, healthy years. This time around, it's much scarier and I would consider chemo if it came to that, but I'm hoping to hang in there long enough that new treatments make it unnecessary. I wish that for every one of us. I love you all, but I'd love to have this discussion board have to shut down because no one needed it anymore. We could always just chat about wine and chocolate and pasta and important things like that!
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Thanks Deanna and Romansma. Just having a place to write about him has helped a lot. Most of my friends don't quite get it with regard to Bob being my role model example for survival against the odds. And we can't add or subtract a day to the plan for our lives. Beautifully said. One of the things I do to keep somewhat sane is to remember that I could get hit by a bus and the cancer could be a moot point. Also, worrying and being depressed won't change the outcome, so why waste time on it? That said, I certainly have my little mini-freak out/meltdown moments.
Dee - you're so right. This is the new normal. Young Frankenstein is one of my all time favourite movies. So I just think of this lifestyle as being Abby ... Abby Normal. My MO thinks much the same way yours does - in 5 or 10 years, we'll be looking back at the "barbaric" treatments. I know with my friend Bob, it was less than five years before he went from like 30 pills a day to less than 10. And my other long-term survivor friend, Butch, went from two infusions a day to one pill a day with no real side effects. I also have a friend who was diagnosed with Stage IV prostate cancer and given six months to live. Almost six years later, he's still doing great!
I need to be working. It's Saturday here, but I goofed off most of yesterday and I have a major proposal due. So I'd best quit reading posts and get my rear in gear!
Hugs to all,
Terre
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Hi all - so much going on on this thread! Musiclover and Dune - congrats on your results!Happy to report that my calcium level went down but still a tiny bit high (was 2.78 prior to my infusion on 24 Dec to 2.66 on blood test of 7 Jan and will be retested 15 Jan for next infusion on 21 Jan - should not exceed 2.60). My ionized calcium went down to normal levels. Have to stop reading Dr. Google but MO seems determined to check them closely. MO stopped calcium supplements this summer after an elevated calcium blood test but creeping up a few months later. Also reduced vitamin D intake and sticking to MO's prescribed one time 10,000 weekly. I'l see if that helps. I also started eating 6-8 dried plums for bone density a month ago (see info by ruthbru on another thread). Don't know if it's the product of my fertile imagination, but I seem to have less pain in joints and muscles from Femara. Not to mention the additional intestinal bonus....TMI!
Linda
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In case it's helpful to anyone,following Sharon's post , I saw the clinic nutritionist when I was first diagnosed 2 years ago. She said the most important thing was to lose weight and to avoid sugar spikes - but that nothing was absolutely forbidden. So here's a fairly random list.
No sugar, avoid fizzy drinks and processed foods. A low glycemic index diet is what she told me to aim for.. That does mean low carb - so yes potatoes, rice, pasta, bread should all be limited or substituted. The "old fashioned " grains are better - so we use spelt pasta, make risotto out of spelt grains, have rye or spelt bread or crackers. And my favourite - sweet potato fries.
she also said cut down on red meat - but once or twice a fortnight ok. We eat a lot of Turkey ( a so called superfood) - my husband makes an amazing Ragu sauce from Turkey thigh meat. And a lot of oily fishhttp://www.nhs.uk/livewell/superfoods/pages/is-oily-fish-a-superfood.aspx
Other good things - green tea, yakult, 2x Brazil nuts a day (for selenium), pomegranates and turmeric, plus the usual exhortation to eat more vegetables. Avocado recommended and lots of water.
I also cut down alcohol (I only drink red wine these days and the occasional glass of champagne) and dairy.Eat breakfast - eg eggs or porridge or melon (a low sugar fruit) and blueberries - and if you need a snack, nuts or Bounce bars
We eat out a lot, I generally go for fish - but sometimes there's nothing like a steak. Anyway, I'd do what works for your particular circs and, if your doc says ketogenic, I'd certainly look at it.
It didn't stop a recurrence but I lost 24 Kgs and feel a lot stronger which I'm sure helps with the side effects0 -
Thanks, Bosco. Your comments on diet are helpful. The doc had no dietary recommendations at all, which was disappointing, so we're looking at this ketogenic approach on our own. Everything you say makes great sense to me, and we were already doing a lot of that just for general health, but we weren't always conscientious about it. I think it makes us feel a little bit more in control to do this, so we'll give it a try. It can't hurt to eat healthier!
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I have been reading through this thread and have a question. I was originally stage 3 and progressed to stage 4 Oct 2013. I had one met of the pelvis. The thing that concerns me is the bone marrow tested positive on the biopsy. For some reason this worries me a lot. I did have stereotactic radiation and have been NED for a year. I still have pelvis and leg pain. The oncologist thinks this is from damage from the met. Is there a big difference when the bone marrow tests positive? Still wondering why it still hurts so bad. Thanks for any advice
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Sharon,
Bosco gave you great info on low or mod carb. I was doing this to lose weight & heard some follow it to eliminate sugar which they say is fuel for cancer. It worked great but have to get back on it as the holidays brought the sweets back in. I honestly felt better on mod-carb program. I think anything drastically different is hard to stay on, but eliminating high carbs is doable. Carrots are very healthy for you but have high sugar, & I've read that carbs turn into sugar when it metabolizes. I just elimininated starchy veggies, high sugar fruit or veggies, pasta, bread & rice. I also eliminated diet cokes right when I found out I had cancer, I never drank regular coke. I read that if you eat protein with your fruits, you will avoid the sugar spike.
Terri
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Terri - thanks for the info on fruit plus protein. Great stuff!
Kandy - welcome to the thread. I don't know about the bone marrow question but I'm sure others do as I've seen it discussed here. I had radiation for my spine and femur and hip and it still aches despite no active mets. Some days it really hurts and other days almost no pain. I take a generic type of Celebrex and it helps - I have arthritis comingled with my mets, so it's hard to say which pain is which. I'd talk to the GP and MO and tell them about the pain and your concerns. No reason to live with pain you don't have to live with.
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Good evening Ladies:
Sharon...Hello..I grew up and was raised in East Troy Wisconsin...Dairy farmers daughter till I left when I was 37 years old and moved to California...I'm now in Idaho...yah right...what the heck ha....well I came here to follow my grandkids...long story...I was healthy a year ago...or I thought I was....I had BC in 2010 went well for awhile...2012 Uterus Cancer and now April 2014 Stage IV METS....I'v gone through 2 other treatments...Xeloda first....Taxol Second...and now on Faslodex and bone booster mthly...I claimed 2015 to myself to choose not to focus on my disease and live...fUnless things come up to where my focus is taken me to it...
I have a question for anyone...I have had 2 rounds of the Faslodex...and this morning...well it started the day before..I notice that my right butt cheek was rather hard and my left was it's normal flabby self...I also have a hip tumor..which I have had Rads done to early last year...but my upper leg and down my femur..is very tender and in pain...thanks to Morphine...yes my pain is that direct...I only take it once a day morning...15mg extended release...I do have QL when needed for more direct pain ...but I was just wondering if anyone has experience there cheeks feeling that way...from treatment or the bone mets in general...
Thanks...Love to All...Carla
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Hello everyone,
Don't know where to start but here it goes. Had my fifth infusion today, nurse said my veins are scarring, I guess they're tired of being poked, but had my blood work done at the same time. From there it was off to see the oncologist. First the nurse came in and went over everything, brought me a print out of my tumor markers. Last month they had dropped significantly from 137 to 68. The newest results from December's show they dropped to 53 so we're happy with that!
Regarding the bone scan, things are a little confusing. I don't know if you all remember me wanting to cancel this bone scan because it's only 3 weeks after rads. My radiologist agreed but MO wanted me to go ahead. So this past Monday I had the bone scan done. The oncologist I saw today was not my regular one and she said the rad onc emailed her saying the results of my bone scan cannot be taken seriously as there is still inflammation from the rads. Oddly this scan mentions nothing about my L5 at all (strange as this is an area I had a met) and had radiated but does mention a new area of uptake in the superior sacrum. I do have an old injury there from a fall down the stairs and was told I had arthritis there so not sure if that's what they're seeing. As far as the humerus and right rib it says slight progression but the rad onc says it is more likely healing as the cancer cells are dying. Soooo overall impression says slight progression but she's telling me we can't take that seriously. I could also tell that without her wanting to talk against my MO, she agreed it was too soon to do this scan. Sternum is stable. Basically when I left she said we feel everything is stable and since my tumor markers dropped again it all looks good.
Terre, she's putting me on a med for the pain from letrozole, doesn't want to take me off of it since it's doing good for me but says my quality of life could be improved with this drug which she said is similar to Celebrex. It's called Meloxicam? I think I will give it a try!
Also after next months infusion she said they may switch me to every 2 months which is fine by me.
Hugs to all, Annie
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Hi Freebird! I have a sore butt cheek off and on but it's from the scar where the opened it up to put the pin into the femur. I'm sure others will weigh in.
Annie - I'm on Arcoxia (etoricoxib). The Arcoxia is the NZ brand name; likely has another name in the US. It's similar to Celebrex according to my MO and it really helps a lot. And doesn't totally trash my stomach. I take a Pyrolosec (sp) twice a day.
I need to get back to work!
Hugs to all,
Terre
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Freebird, I have been on Faslodex for a year. It is not unusual at all to have a knot on one side and not the other. There are a lot of reasons why this happens, the expertise of the nurse, the location of the injection, whether or not you tensed up with the injection. It is important to stay relaxed and keep the weight off that leg when they inject. Heat and Advil will help now.
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Hi Freebird, there is a specific " fannypack" thread that's all about faslodex. My butt is sore from it today but it is different every month. Check out that thread, it's a good one.
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Annie - I agree that your bone scan was done a little too early. Thought I'd mention that reports indicated progression on my pubic bone after rads but it was inflammation and scarring tissue. I alternate between Ibuprofen, Naproxen and Celebrex. Meloxicam is in the same category of anti-inflammatories but apparently easier on the stomach. I take Pantoloc every day for stomach coating. Wow your TMs really went down!Carla - what a pain the butt! If you haven't already, you may want to check out the Falslodex Girls Thread.
Linda
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Linda, thanks for the info and I tried to cancel this bone scan, my rad onc agreed which is why I think he was right on top of the results even though he didn't order it, my MO did. I hate to say but I think my MO is a little bit arrogant and just doesn't want anyone telling him what to do, even if they're right. I think it was you that mentioned your scan talking about areas that were never discussed before? I find it odd there's no mention at all of my L5, what happened to it? Is it better, worse or did it disappear? But now the mention of new uptake in my sacrum. This is all so confusing! I really wish they would have just waited. He said he wanted a new baseline and what I have now is a scan that shows a lot of false positives 😕
Hugs to all, Annie
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Gosh Annie, With all indicators in a "stable" direction that's perhaps a good report even though it may need more questions answered. Prayers here that the rad onc will bring more clarity and put it all together for our Annie. Hugs, Peg
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ML and Annie, congrats on stable results and lower tumor markers.
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