Bone Mets Thread
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Good luck with the port placement, Dee. I don't have one at this point, so can't help much, although I did once read a suggestion here on BCO about asking for it to be positioned so that any future scar would be easier to hide under clothing. I don't know if that's even an option or matters to you, but it was something that stuck with me when I read it.
I just wanted to share a bit of positive news. I had blood work on Monday and just saw my local onc this morning for the results. My CA27-29 was 75 this time -- still out of normal range, but down from 96 in July. And all of the other things they check for were totally normal -- a HUGE improvement over where I was even a few months ago, needing transfusions and all. I hope this will give those of you new to Stage IV and maybe facing surgeries and/or dealing with new drugs a lot of hope. Our bodies truly do have a tremendous capacity to heal and rebuild, and I am so very grateful for a good report this time. Now to see if my UCLA onc will postpone the CT she's ordered that I have been dragging my heels on. Deanna
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Dee had a port implanted this past April. I was trying to avoid a port but when my onc said I had to have IV chemo I tried one infusion without the port (it hurt) so I had the port implanted. The out patient surgery was easy with no side effects. The only down side is that a nurse who is trained in using ports is the only person who can access it and sometimes I have to wait for the right nurse. I have lousy veins and will not let anyone use my veins now that I have a port. The good thing was that the surgeon who implanted took my concern seriously about the port showing along the neckline of my dress for my daughters wedding. Port was not visible and the wedding went very well. Charlotte
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Hello Dee,
I had my port surgery in February of this year. It was a day surgery and under local anesthesia. I have about a 1.5" incision scar. Recovery went well with little pain. The only issue I've had is that it is placed in the path of my bra strap. The rubbing on my port from my bra strap is a pain. My advise is - ask about placement. I wish I had. If you're not one to wear a bra, then it won't be an issue. With warm regards, Karen
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Deanna, Thanks for the luck, but luck back at you for your positive news, it makes me hopeful that my mets will be stable soon.
I am going to ask for the port to be put as low as it can be. I wear a lot of v-neck tops & don't want it to show (not that I wear low cut tops) But I finally put on a bathing suit this summer after not wearing one for years & I don't want my port to show.
Charlotte, My onco did tell me that only an RN can operate the port, which means I will have to travel to get blood work done, but my poor little vein is getting way over used. But if I don't feel like going to Nanaimo, I can get blood work done here in my vein.
Karen, Because I had bilateral recon, I never wear a bra, but I will make sure the placement is where I want it. I'm going to try on all my favourite tops & put an X where I would like it!
We were just up in Vernon a few weeks ago, my dad lives in Summerland, so we're up that way a couple of times a year. Thanks everyone, I'm sure it will be an easy procedure, but I appreciate all the feedback & good wishes. I'll post when it's done! Monday 11:30am in Vancouver. Cheers, Dee
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Deanna,
Great news! I believe that our bodies do have that healing component.
Healing hugs to everyone.
Lorri
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I think possibly one good thing is coming out of all this for me. I have always been pathologically shy with a feeling of being worth nothing. On the few occasions I did actually push myself to reach out and try to make friends, I left further contact up to the other person. Lately I've been calling lots of different people I have known and am making plans to meet up with them for meals or drinks or whatever. I seem to be more aware that my failure to maintain regular contact with them could be construed as blowing them off. On the chance they ever did like me, I am working seriously at getting together with them. Maybe they don't like me and the get-together will never happen. Then again, maybe they would like to get together. I wonder where this courage is coming from.
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dunesleeper,
Is that you? What a fabulous picture and good on you working those social connections. Having bc can be very isolating if we let it, but I think social interaction is really important to our overall well being.
Caryn
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Dunesleeper, nice picture. I kind of got a chuckle from your post. "I wonder where this courage is coming from." Too funny to me because I was ALWAYS afraid of so many things, particularly public speaking and heights. Now, pffft! Not afraid of anything. I always smile to myself too when I'm in the hospital for whatever and the nurse/doctor says this is going to hurt. In my head, my response is "I'm dying of cancer....what could you possibly do that would cause me more pain?" I know they're being kind, but it sounds so silly. Courage is the one good thing we get out of this mess. Enjoy the new-found freedom of courage to the max.
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Dee, here is a horror story for Halloween on port placement. The port is supposed to be placed on the opposite of cancer location. So, 4 years ago, before I went under for the port, I marked the bra location on my right side and asked the surgeon to avoid that area for port (cancer in left breast). My surgeon, a very experienced doctor, told me he did not guaranty my wish. When I came to after the placement procedure, I found the port is on the left side and there two incisions on the right side! DH told me, the doc tried two times on right side, could not find the right place, finally he had to put on the cancer side high up near the collar bone. When doc can't find good real estate, then the port will go where it has a good vein. Do tell your doc where to avoid, then keep fingers crossed.
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cling, thanks for the words of warning. I'm in big trouble if they're supposed to put it on the opposite side, as I don't have an opposite side & putting in my neck scares me. I will make sure that they know, really, really know, where it's not going and then keep my fingers crossed!
Dee0 -
The last three months I've had increasing pain in the groin and left femur making it sometimes difficult to walk. I've taken nerve medicine which helps, but it is still there. I researched side effects of the bone shot I've been getting (I think xerta?). One of the side effects is groin and femur pain. I read the groin and femur will hurt up to several months and then the femur break without falling. The article said to tell your doctor if you have groin and femur pain as it's serious. I've mentioned it to my oncologist and she suggested pain medicine. I have a cortisone shot scheduled for tomorrow...now not sure if to go through with it.
Another side effect is diarrhea and anemia. I have been having diarrhea three or four times a day...watery. I am also extremely anemic. I know this is supposed to prevent bone cancer, but not sure my body is handling this drug well. I'm asking my doctor to take me off of it. I am extremely allergic to Fosamax. One pill almost killed me; swelling of throat, tongue and face. I am very sensitive to drugs.
I'm hoping Herceptin, perjeta, and the estrogen blockers will control mets to the bone. I did have radiation to the upper spine, and femur. They did not radiate bone mets to arm or lower back and a few ribs. My oncologist said targeted therapy should control it as to why I wonder the need for the bone shot once a month. No more...I don't want to break my femur.
I am having a port put in December. I can only use my left arm and the veins are scaring and hard to find. I'm also having a hard time staying hydrated. I just begun taking iron supplements. I hope it will help.
I am happy that my lungs and liver mets are shrinking. I do have one tumor in the lungs that did not shrink but is stable. My hilar lymph nodes went from 2.4 C to 1.7 which is better. I have a brain MRI in three weeks. I can almost handle mets right now anywhere but the brain. It is difficult for me to focus on mets to one tumor as there are so many that you have to deal with the ones most critical. Right now I am concerned about the hilar nodes and one in the lungs. I do have one tumor on a rib that I can feel, and it aches most of the time. The others ribs were radiated at Bicher in California so they don't hurt as much.
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hindsfeet,
Good to hear from you. I am sorry that you are still having pain issues and hope that can be brought under control,soon. The shot you are getting sounds like it's Xgeva. Bone strengtheners are given to offset bone loss from the AI's, not to prevent bone cancer (which is different than bc that has spread to the bones). However, the drug is thought to have some value in keeping bone mets in check. Spontaneous femur fracture is a possible side effect, though not frequent as is ONJ. I was on a different bone strengthener for two years but my mo took me off of it due to concern over these things. Take care.
Caryn
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Good morning! I'm hoping to get some feedback from all the experts here. 😉 I just received pet scan results and it shows progression of many of the existing bone lesions, as well as many new areas in my bones. I have had extensive bone only since I was diagnosed stage IV (ILC) about 14 months ago. I tried Faslodex and Femara and that only lasted 4 months. I've been on AFinitor and Aromason since January and had some stabilization on my last scan at the end of June. It's clear that I've reached the end of this ride. I'm really uneasy about starting IV chemo for so many reasons. I've done TAC as well as Abraxane as a stage III, and even my Onc admits, these probably gave me little advantage. So, I fear chemo won't work that well now. Anyone have any other ideas for me? I don't qualify for the Palbociclib trial because I've been on Afinitor. I'm thinking of getting a second opinion. I'm in Southern California. I'd love to go somewhere that tests my tumor for chemo sensitivity but I have no idea who does that and if they can even get their hands on my tumor. Is it saved or do they need to do another biopsy? Anyway, lots of questions and I'm just now starting to research it all. Thank you for any help you can offer.
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Romansma, I've missed seeing you here, and have wondered how you're doing. I see Sara Hurvitz @ UCLA, and I don't think there's a better bc oncologist in Southern CA. She's head of bc oncology at UCLA, and I would highly recommend her. She's in the Santa Monica office, so would be an easy reach for you from Ventura. PM me if you want her contact info.
I can't help with the tumor testing question, but I'll be very interested to hear what others know. I actually had asked Dr. Hurvitz about that when I was first re-dx'd, and, at the time, she seemed to say that it isn't all that reliable across the board. But that was almost a year ago now, and things have probably improved in that time. Plus it sounded like it certainly worked for some -- just not everyone, which was her point. But who knows if those ppl used the same lab, and maybe some are much better than others?
One question... When you were re'dx'd, did they check your ER & Her2 status again?
You are in my prayers that whichever onc you find for a second opinion will have some brilliant cards up his or her sleeve! (((Hugs))) Deanna
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Thank you Deanna! I've kinda known that a progression was in progress for the past 6-8 weeks. Increasing pain during that time. I've also known my Onc will suggest Gemzar and Carbo and I'm having a hard time accepting that. Sooooo....I've been trying to get my pain meds just right, but also just having as much fun as I can with my family. My youngest and I went to SF for the NLCS and we were there to see the Giants win the Penant. Insane! I paid for it with pain and fatigue for days afterward, but totally worth it! Anyway, I may need to accept that chemo is my best option right now. I think I'm just not ready to be the full time cancer patient yet. I remember when I had the last scan in June. I bargained with myself that if I could at least make it through the summer without IV chemo, I'd be happy. I did. Now, I want the holidays. Never happy! As I've been reading and researching this morning, I think a bit of acceptance is setting in. Maybe. I will PM you, Deanna, as soon as I figure out what I'm doing. I have full confidence in my Oncologist, but it can never hurt to have a fresh set of eyes looking to see if there might be something else that would be effective. Shoot! I was hoping to be one of those outliers that had a long response...even a grand slam situation like NED. Oh well, maybe next time.
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Romansma, are you doing anything complementary or alternative along with your tx? I may be crazy, but I honestly think giving up just about all animal protein back in July is helping me. And a second opinion certainly can't hurt -- just so that you've explored all your options, and at the least gotten confirmation that nothing's been missed. I still use a local onc, too -- so that I don't have to run into UCLA (3 hrs. away for me) every month. But I can tell you from my local onc's reactions to things UCLA does (and he's been an onc for 30+ years and has a booming practice), that he does things very differently than UCLA. For example, he was surprised that my UCLA onc went to the trouble of analyzing my July CT to make a determination of healing vs. progression. That just seemed to take him by surprise. He commented that she must have taken a real interest in me! What??? I thought that's what ALL oncs did w/their patients!!! I felt like he would he have just accepted the report that said progression and switched my meds. And that's just one example.
Dune, thanks for posting a pix! You look wonderful! And I think it's great that you are reaching out more than you have in the past. Funny how bc can instantly refocus our priorities!
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wow, that's so interesting about the healing vs progression. I've often wondered. Even now, I know this current report is the opinion of one doc. Hmmmm. On the alternative, yes I do. I stopped all dairy and most meat back in June. I still eat meat a couple times per week (tiny portion) now because I seem to feel better. I'm not opposed to trying again. Do you have any research etc on this that I could read? Dairy has been easier for me to keep out of the house, but my boys, and even my husband look at me sideways when I feed them vegan meals for more than 2-3 days straight. They even have one of our good friends joking that you can't milk a nut (hand movements and all). I also take some supplements. Hiking and walking has been difficult with pain and neuropathy, but I stay active with my kids and dogs. I think diet can be huge. I juice and smoothie often. Lots of veggies and fruit. Gluten free except for occasional sourdough because I love it more than chocolate. Very little alcohol, just occasional glass of red wine. I'm a normal weight. I could probably be a little less, but normal bmi. I mention all of this because I think it can all have an impact. Not any single thing, but all together it adds up. I'm open to suggestions here. Thank you for the input, so far!
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Romansma, hi, I'm newish to stage IV & have bone, lung & node mets.
I've been put onto xeloda (oral chemo) and it seems to be working- most areas have shrunk (apart from 2 spots).
I wondered if that might be an option for you as you don't want to go to IV chemo. It's easy enough- tablets twice a day. Se's are mainly fatigue & hand & foot syndrome (they get red & sore- but mines not too bad)
I hope you and your onc can come up with a good plan to deal to any progression. (Hope it is just healing
)kt
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Hi all..welcome to the newbies.
Carla - you have surely been through the mill. I could feel your fear through your writing and it reminded me of where I was emotionally about 14 months ago. It does get a bit better with time.
Annie - does Femara cause hip pain? Does a bear poo in the woods?
Yes, it sure does. Especially just below the waist in the back; I have a majorly sore spot there and my MO says it's a typical Femara spot.Romansma - good to see you again; sorry you're having a tough time.
Great news, Deanna!
Dune - what a fantastic picture. You look marvelous!
Hugs to all,
Terre0 -
Hi KT - thanks for chiming in. I asked about Xeloda when she told me Gemzar/Carbo was next on the list. She shot it down for some reason, but I don't know why. I see you are ILC also and I love hearing that it seems to be working for you. The ILC seems to be resistant to chemos in many cases, but mine seems to be pretty resistant to all treatment. I even wonder if those few months of partial stable would have happened regardless of treatment. I'm all in my head right now trying to figure this out. I meet with my Onc on Wednesday to get a game plan and I just want to be prepared. Thanks for all the input.
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I had 3 cycles of xeloda twice daily total of 5000 Milligrams..morning/nite doses...I was 14 days on 7 days off for 3 cycles...it caused me to have a ruptured bowel due to the side effects of Diarrhea severe infection..... almost died April 28 2014.....had to have 2 ft of my colon removed along with a colostomy bag,,,but continued on it until June 17th....stuck it out...but I was life less...sick daily in bed daily...couldn't eat...etc...so I finally told OC that I rather die then cont...like this...and they game changed me to Taxol IV...and I have been living life daily ALIVE!!! I don't know how some of you ladies handle that Xeloda...phweeee...my hat is off to you all...Carla L&R
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Welcome back Romansma,
I too am on Xeloda and on my 7th cycle. If you go on the X thread, you will see that it has helped many, including me. Worst SE is HFS, but luckily for me, I don't have it. My problem is fatigue, but you can counter it by taking Ritalin. Best part about it is...it's a pill (convenient) so no IV infusion..... and you don't lose your hair! I am wondering why your MO shot it down?
Hoping your next tx works well for you....
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Hello everyone!
Liljohnnysmommy, praying your surgery went well and that you are well on your way to healing.
Deanna so happy to hear of your positive news, thanks for sharing, that is so encouraging
Hindsfeet, sorry to hear of your pain issues but hoping you'll be feeling better soon. Good to hear your lung and liver mets are shrinking, that is positive news.
Romansma, I hope your meeting with your onc on Wednesday provides much needed answers and a treatment plan that works well for you!
Dunesleeper, what a beautiful picture, thanks for sharing, you have a beautiful smile
. Happy to hear of your new found courage, keep it up!Terre, I think you missed your calling, you should have been a comedian! Thanks for sharing that with me, my pain is exactly in the locations you described and I didn't have that prior to letrozole. I as well have a majorly sore spot below the waist, making it hard to stand for very long.
Dee, praying they find the optimal placement for your port and that it all goes very smoothly for you. We'll be thinking of you on Monday.
Kt1966 and Teen22 glad to hear the side effects from Xeloda are minimal for you, hoping it works wonders for you both.
Well all these trick or treaters are tiring me out, every minute I'm having to answer the door. It's cold and raining here tonight
Hugs to all! Annie
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Romansma, an article I'd read about restricting methionine (one of the amino acids), is what made me decide to eliminate as much animal protein as possible, to see if it might help. Here's a link to a thread I'd started about it. https://community.breastcancer.org/forum/73/topic...
In addition, I buy much more organic than I previously did, and I try to eat a lot more raw. I do curcumin and 10,000 IUs of D3, as well as the many other supplements I've taken for 30+ years.
The diet changes have been easy for me. My biggest challenge is dealing with stress, which I strongly believe was a factor in my recurrence.
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Thanks Annie. I think my purpose in life is comic relief. Glad I could make you laugh. Places I hurt since Femara - my hands, especially my middle finger on my right hand and left thumb; the top of my hip bone(s) all the way around the back, especially a spot just below my waist on the right side (in back); the top of my left hip; the joints really sockets) where my body and legs join up; my knees, and the top of my left foot. And sometimes my shoulders. I have confirmed arthritis in the left foot, shoulders, and knees. But the Femara has made it all worse. And my MO says all the spots I really hurt are "typical Femara pain places." My rib and spine where my mets were also hurt sometimes. I've had two bone scans based on my pain and both are clear (no active cancer in the bones). Finally got put on a generic brand of Celebrex and I'm much better!
I also get bizarre muscle pains in my thighs; the muscle between my knee and groin (on the inside of my leg) cramps up sometimes and it hurts like hell. Don't know what that's from, but if I eat a banana a day, it helps. I take curcumin, glucosamine with botswella, Centrum silver, monthly Vitamin D pill (prescription), and magnesium. Don't know how much they help, but figure they can't hurt. All are approved by my MO.
However, Femara is keeping me stable with no evidence of active mets. So, since the Celebrex keeps the pain reasonably tolerable, I'll keep on going with it.
Can't see the pic too well, Annie, but I think your kitty looks a lot like my Turbo, the giant tabby.
Hugs to all,
Terre0 -
Hey Terre, alot of your pain areas are very similar to what is happening with me. It's great that it's keeping you stable and I hope it continues for a very long time! Glad the celebrex is helping keep the pain tolerable. Thanks again for the laughs
I posted a new picture of Chloe ( my very rambunctious cat). Hope you can see her much better.Deanna, I buy mostly organic as well and try to go for mostly raw foods. Do your Vitamin D come in 1,000 IU capsules or can you get them in larger doses? I had been told you could get them in larger doses so you didn't have to take as many. I currently take 5,000 IUs but I also have vitamin D with my calcium supplement so it's probably closer to 6,500 IUs. My nutritionist takes 10,000 IUs daily and told me to up mine because you need more when fighting cancer. She also takes the curcumin, something I haven't started yet. Can you recommend a good brand? She makes her own curcumin capsules. And Deanna we sound very much alike, stress is one of my biggest challenges too but working really hard to minimize it as much as possible.
All the best to everyone
Hugs, Annie
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Dee, What great news on all fronts! It is so rewarding after such a long time with treatments.. Then checking lab results and ca markers etc..and it seems like forever to have some positive movement. Must be doing something right gal
Hugs Peg0 -
A while back on the thread, there was discussion about stress, and all of us in the discussion had a very stressful event (or series of events) both before the first dx and before the recurrence. I definitely think there's a link; for those of us ER/PR+, it may be that stress produces more hormones which feed the cancer, etc. Hard not to be stressed though.
I did kind of figure something out though that works for me. Not saying it will work for everyone, but here goes (this is a bit long). I am the ultimate project manager. I've managed $45M construction projects successfully. I project manage everything (including my relationships if some of my friends are to be believed!). So when I was dx with Stage IV, I wanted to project manage it. I kept saying "If I just knew how long I had, I could manage this disease". I spent about six or eight months like that, just in a constant state of mental churn.
Another factoid that factored into my current mental state is that I work in Wellington, where we have buses and pedestrians in close proximity. And a jay-walking culture. Pedestrians were getting routinely hit by buses for a period of time. So when people would ask me "how long do you have?" I'd respond with "I don't know, but I do work in Wellington, so I could get hit by a bus at any moment!"
So it finally dawned on me...I COULD get hit by a bus any day. And if I knew I was going to get hit by a bus tomorrow, what would I do differently than I'm doing right now? Then that kind of morphed into...if I did know I only had a month, what would I do differently? If I knew it was a year? Five years? At any rate, it's helped me with perspective on things. As Caryn said, some of us last a long time and some not so much. And I've seen some here who seem to be doing fantastic and then suddenly their cancer spirals out of control. So I have no idea how long I'll be stable. I only know that I am right now, and I assume I could get hit by a bus tomorrow, so I try to live that way (easier said than done). It's helped me reach kind of a place of inner peace, I think. Not that I don't freak out and get terrified from time to time, but...it has helped.
Annie - three of my brood including "Catch and release the mouse" Turbo, the big tabby. And yes, he is huge.
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Annie and Terre....I pretty much have the same "pains" as well ...save the middle fingers
My question is...what kind of pain do you feel? Are they "bone" and "muscle" pains mostly? Mine feels like "wound" pain, like burning when you first scrape your skin?
It's like a pain in your veins?I am not certain if anyone feels this type pain I am describing....but sometime I have to use a heating pad or hot water bag (on top of my pain pills) just to relieve it.
ANYONE?
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Teen22 - sometimes it feels almost like a burn, but down deep, if that makes sense. And sometimes just feels like I did too much gardening. And sometimes is a shooting sudden and really nasty pain that makes me make ugly faces. I'm guessing with the variation I have with the various bits and bobs of pain that it really varies widely between people.
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