Bone Mets Thread
Comments
-
Sharon, my onc also is very positive that cancer is becoming something that can be treated for a "long time". She was very clear that stage 4 is not curable but followed that with telling me that she has patients that have been on treatment for 15 years. She then said that she feels I will live a long time yet. She is also very conservative and straightforward with all information. Part of me believes her and the other part of me is just scared to death. It's a daily struggle
0 -
Hi everyone, I am an advocate for my mom on this site. I would love some advice.
She is Stage IV (since 2011) which started in her bones and then spread to her liver and more recently, malignant pleural effusion (liquid around her lungs which is drained a few times a month, causes breathlessness, fatigue).
She has a very painful prominent spot on her chest from the cancer in her bone there. She is supposed to get a consult soon about radiation there but I wanted to seek out what you all think about her doing that. I am not familiar with the process of radiation of the bone-- how successful it is with cutting back pain or even killing cancer cells.
She has to take strong pain medication around the clock for this spot and sometimes even then, the pain is there. She feels like she is too weak (while already feeling extreme fatigue) to handle radiation but from what I've found, the side effects of radiation aren't bad at all? Please shed some light. I would love to hear some first hand experience.
All the love you all. You are all warriors in my book.
xo,Sarah
0 -
What type of bc does she have, in terms of hormone sensitivity and HER? What treatments has she had and what is she taking now? Is she doing anything else to support her health, like diet and supp!ements? Can you be more specific about where the spot is? Maybe someone here has had the same location. How old is your mother?
I didn't have bone pain per se, so I can't comment on rads and pain relief. The side effects vary depending on the location. Mine wasn't bad, but I did get fatigue. The consult will go over that with your mother, as well as any potential damage. Assume they will underplay side effects...mine always do.
0 -
Thanks for the response Milaandra
Here is some info about my mom: (I'll go back to the start)
1st round with bc in 1994
2nd round with bc in 2004
Came back stage IV in 2011She did well on hormonal therapy until last fall 2014, where the spots in her liver got worse and she developed malignant pleural effusion. Since then she was put on four different IV chemos, all of which didn't work and did take a toll on her (her last one was Adriamycin).
She is currently on Ibrance (hormonal therapy) + Letrozole. Due to her pleural effusion, she hasn't been able to have a petscan. Her last one is in January. Since then, they have been going by how she is feeling, the reaccumulation of fluid in her lungs + the nodes by her neck to gauge her cancer. To be honest, it doesn't seem so accurate. She used to have a lot of pain in her liver as well as the bones in her back, but now those pains have subsided.
We don't know much about what can help her feel better as in supplements or what not. I just ordered some Essiac extract from Amazon. Should receive it soon and hoping that can help her a bit.
The pain in her sternum is the one that is very prominent and ongoing. Due to all this going on, there are some signs that show cancer might be spreading and other signs that show treatment may be working. It is all really frustrating.
I guess either way, it would be great for them to find some kind of solution for the pain in her sternum. It's hard seeing her in constant pain.
>> Any and all advice welcome!
0 -
Sarahsuse i don't know about bone pain on the sternum. i had horrible pain in my hip and lower back. The doctor did recommend radiation, so I had 15 rounds (5 days a week for three weeks) The side effects for me were fatigue (everyone seems to get fatigue from rads) and since my pelvis was being radiated it also affected my digestive system. Hope the doctors can help ease your mom's pain.
0 -
Thank you for all the kind wishes!
Sarah - With regard to radiation - it does help with pain. A lot. There are some on this thread who have had radiation to the sternum; hopefully they'll weigh in on this. From what I understand, it does help. But it can cause problems with the esophoagus and swallowing, so she should ask about that and how to avoid/deal with the effects. Sorry she's going through such a rough time. And sorry for you too - my mom had cancer and it was harder than having it myself, I think. And radiation does cause fatigue.
Good news on the TMs Leah! Hope your scans are all clear!
Lynnwood - what you're feeling is fairly common, I think. Not to imply you're ordinary!
My MO keeps saying I'm doing great (and I am!) but there's still a part of me that's terrified.Dee - hope things are going well for you.
Xavo - I avoid stats, but love the ones you're posting about!
Hugs to everyone else...I know I'm missing people, but I need to get back to work - lunchtime is over!
Terre
0 -
Sarah, sorry to hear of everything your mom is dealing with. I do have mets to the sternum and have had radiation to them in December. The radiation I received was called SBRT ( stereotactic body radiation therapy). This type of radiation is more targeted and directed precisely at the tumor so that surrounding tissues and organs are not affected. That being said I can tell you it did cause me fatigue and some mild esophageal issues which to this day still bother me every now and again. I think the Celebrex I take may also aggravate it but all and all it worked very well for me and my mets are regressing. My radiation oncologist said that the standard radiation that they use would surely reach the lung area when radiating the sternum, which is why they used SBRT. I also had Cyberknife to my other mets which is also a very targeted radiation. I hope this helps. If you have any other questions feel free to ask.
Hugs to all, Annie
0 -
NYCchutzpah KiwiCatMom annieoakley
Thank you all so much for weighing in, it is all so helpful. I think radiation could be a really good option for her. It is so unfortunate that she has seemed to hit a wall where the fatigue from treatment (hormonal) and around the clock meds have given her such extreme fatigue. She says that even going to radiation treatments would be too tiring, even just getting wheeled around and having to go to the hospital every day for radiation therapy would be too tiring.
It is frustrating to me that her oncologist never mentioned the possibility of radiation. I brought it up to him in a phone conversation last week and he said "Yeah, that may be a good option for her." I mean, it could have made a world of difference if this was brought up a few months ago. I only did now because I was doing research and came across that option. I have three little ones at home and try and look into options when I can. I wish he had mentioned that sooner, while my mom has been in a lot of pain for weeks on end.
She may be getting a consult for radiation soon, but I don't know.. I think she is also highly considering hospice now. This sucks doesn't it?! I'm so sorry anyone else has to go through this. It is so hard to watch my mom suffer through this intense pain, but I know it's 100X worst for her.
Thanks for listening & for your advice.
xo, Sarah
0 -
My mother sort of gave up, too (colon cancer) so I know how you're feeling. She did what the doctors told her to do, but didn't take an active role in her own health, particularly when it came back stage IV just three months after finishing chemo and getting the all clear. I tried to get her to try lifestyle changes while she was still pretty healthy, but I couldn't make her do it...I couldn't even convince her to take a seaside vacation. It's so hard to go through, but it's her life and her choices. Radiation may help and alleviate the pain, which might help her feel more optimistic if she could rally her strength for that. Do you think it would help to take advantage of some of the counselling services available to cancer patients? How about a holistic practitioner? Do you think having someone like that tell her there is hope might make her feel that, too? Maybe better pain relievers?
0 -
Sarahsuse and Milaandra. It is nice to hear you two are so concerned about your mothers. Since I am a mother with a wonderful adult daughter I can tell you some things from the mother's point of view. When I was first diagnosed my DD came home to visit and brought me some snake oil that cures breast cancer, she meant well.. She even moved back east from OC Cali She maintained a long distance relationship with her now husband. He also moved back east after getting a job here.. Back in the summer of 2013 I was miserable in a lot of pain, couldn't do anything but wait to take another pain killer which kept me loopy. Lost a bunch of weight (not a bad thing and kept it off) I felt like I was dying. Luckily my dr recommended radiation which I did and while relief was not immediate the radiation did eventually ease the pain. Well my daughter keeps on giving me a reason to stick around.. Last summer it was her wedding to a wonderful man. This year her baby is due in early Oct. so I can't give up yet. I still don't like it when she tries to give me advice. Tho sometimes she tries to mother me. It is a bit weird to me that now I am the one sitting in the back seat (the place for mom in laws) rather than the driver's seat. Counseling will help or better is a support group with people who are going through similar stuff. Good Luck girls.
0 -
Milaandra - I know exactly what you mean regarding your mother. And you too Sarah. It's SO FRUSTRATING to sit back and watch people we love make choices that we don't think are the right ones. NY - I was probably the same with my mother as your daughters are with you. My mother just gave up - would not be her own advocate, only would do what the doc said, wouldn't get a second opinion, etc. At any rate, that was the hardest life lesson I've learned - it's their choice and you have to give them the space to make it. I'm sure people are frustrated with me for some of my choices too.
Sarah - hope you mom decides to do radiation. I only had five treatments and the pain relief wasn't instant, but it certainly did help. And I understand the extreme fatigue; when you deal with that and constant pain, sometimes continuing on just feels like too much effort. Please get in touch with a counselor somewhere. I was able to get a nurse advocate at MD Anderson to talk to me when my mother was sick, even though mom wasn't a patient there. There was also a counselor at the hospital associated with the cancer ward. I also saw a private counselor during my mom's illness and it helped a lot.
NY - congrats on the great life events. Can't wait to see baby pics posted here in October!
I have a bit of survivor's guilt on this page sometimes, but wanted to share some good news. I went to my GP today for this stupid ear/dizzy issue I have. He had a note from my MO which said I am "stable and should be considered to be in semi-remission." My previous MO and everything I've read says there's no such thing as "remissions' for Stage IV BC. So "semi-remission" is good news I reckon. And also happy that my blood work says I'm still stable.
Hugs to all
Terre
0 -
terre no need to feel guilty about anything you are an inspiration and give us hope that a "semi remission " is achievable
Aurora
0 -
Milaandra Definitely. As a bystander, I can only suggest so much and the decisions are ultimately hers and I have to respect that. I'm hoping so much that she decides to try the radiation. Like I mentioned before, I get so upset when I think that her oncologist never recommended that for her pain long ago. I don't know.. I guess he may have had his reasons at the time not to recommend them. This is always such a hard thing - having to second guess decisions are what not. I am sorry you were unable to do a seaside vacation with your mom. I was in tears the other day talking to my mom about how I wish we were able to go to Alaska together; something we talked about for the past few years and put off because we thought we had more time. Then her decline seemed to come out of nowhere and so fast. I have had to remind myself how the little things and the "mundane" days really have been the most important and special to me.
NYC chutzpah You have a wonderful daughter! I know what you mean about her meaning well. I too find myself Googling so often (at least in those early months) and trying to find something that will help her. I want to thank you so much for chiming in. I passed along your message to my mom to show that there is someone who was in a very similar situation as her in regards to cancer in her sternum and how it proved to be a really good move for you. I hope so much that she will choose to do it. I am dreading her saying that she doesn't want to try, but I will support her of course no matter what
KiwiCatMom Yes! It can definitely feel frustrating! My mom is the sweetest, kindest, most encouraging person I know & a constant support in my life. I wish she had the best possible care ever and when I started to make visits here and there with her, I noticed how her oncologist isn't one to "go the extra mile", explain things better or give recommendations often. And since my mom has more of a passive personality, she just ends up going with whatever he suggests and all it seems to be is protocol. Like you said though, it is her decision and no matter what happens, she is at peace. She is not angry at all, just in a lot of pain and has constant shortness of breath from her pleural effusion. I just hate seeing her in pain and I hate that her days left -- whether they are numbered or plenty, will not be filled with suffering. Ughh, this is not for the weak of heart for sure! Thank you so much for your advice and encouraging words. // And please don't feel survivor's guilt! How wonderful for you, that is amazing news! Wishing you the very best and many more good results to come!
xo,
Sarah
0 -
Hi Everyone! I'm finally back from Victoria.... 2 CT scans, 8 tubes of blood, 2 Dr's appts, radiation planning session & then another Dr appt today along with rads, then the 3 hours home, OMG I'm exhausted! LOL. And a bit disappointed. They were only able to radiate my arm. It was my middle back, right rib & sacrum that is causing me all the pain & they can't get a good enough image on CT or bone scan to match up with pain, so we're starting all over again with an MRI to see if they can line them up. Quite frustrating to say the least. And the lab "forgot" to do my tumor markers which have always been super consistent for me so maybe blood work again on Friday.
Hopefully rads to the arm will help. I am going to try to get caught up tomorrow, but it's "hell week" and I have my infusion on Friday, it may take me a week to get caught up! Hope everyone is doing well, cheers, Dee
0 -
Geeze Dee.....get some sleep!
Hope they get the other stuff sorted out with the MRI and that the rads help your arm.Sarah and Auroaya- thanks for the kind words. I'm quite pleased that I'm stable and in "semi-remission" but wish everyone else was too!
Sarah - I know exactly where you're at. Almost like you're writing the story of me and my mom. Sending you big hugs.
Hugs,
Terre
0 -
Terre, that is the best news, I'm so happy for you! I had a similar sort of situation the other day when I went to see my plastic surgeon. He came in saying wow I have the report from your oncolgist and it says you are responding very well to treatment. That made me feel good, so not semi - remission but hey I keep my hopes up to hear that some day too.
Dee, my goodness I'm tired just from reading your post lol. All kidding aside that is alot and I'd be exhausted too. I can't stress to you enough how much the rads helped my arm, it's incredible really. I couldn't even lift a plate or wipe my counters without being in excruciating pain. Now I have to be careful because it feels so good I tend to forget there was ever a problem there. Wishing the same for you and I hope they get everything else sorted out for you. Take all the time you need to get caught up and know we're thinking of you.
Patty, where are you? Hope you're having fun with dh, not sure if you're boys are still away, I tend to lose track of time. I hope all is well.
Hugs to all, Annie
0 -
Terre - Oh no - do not feel guilty. "Semi-remission" sounds wonderful to my ears and it's a message of hope.Dee - Hang in there!
Linda
0 -
Congrats, Terre! Love the sound of semi-remission! It has the same ring as cautious optimism, and makes me smile! Great that your doc has coined a new, positive status!
Dee, glad they were able to radiate your arm. Hopefully the other problem area will get sorted out with an MRI, as annoying as it is to have to go back to Victoria. Hope you can lay low today and recharge before your infusion tomorrow.
0 -
Terre, "semi-remission"! That is, your onc is confident that you would stay with no or the minimum disease for a long time. Thank you for sharing this great news with us which made us feel hopeful. I asked my onc last time I saw him that statistically speaking (not that I am obsessed with statistics, Terre), 2% or 3% stage iv mbc patients are cured, how is that achieved? My onc said that is true, only they would not call those patients are cured, they say those patients are long-term survivors, and that there are no recognized special treatments to achieve that results (that is my point, to make sure I did not miss any magic treatments!), so far their knowledge is the current available treatments are possible to result in long-term surviving. Terre, you are on this track!
Dee, sorry you are exhausted with so many tests all in one week and the place to do them is far. Hope you rest yourself well and quickly get recovered! It occurred to me just for a moment if I should go to the Dana Farber Center (1.5 hour driving) for treatments. Then I concluded no reason for that as long as my current treatment is not problematic. My current onc is not my original one who did my initial treatments in PA. But I have been seeing my current onc ever since I moved back home in MA for about 12 years. Dana Farber's doctors all have very impressive resumes, but that probably would not provide me with a guarantee of good results, let alone a cure. What do you guys think?
0 -
No guilt, Terre! You give us all hope for long-term survival. You can't feel bad about that!
Hugs, Sharon
0 -
Hi guys, it's been really awhile that I posted. It has been very hectic with my daughter Dani, and now i'm literally just throwing myself in to get with the program.
Terre, you are so cute, CONGRATS!! i know what you mean about feeling guilty, but as Sharon8 commented it gives hope to the others. And, happy happy bday!!!
Dee, what a relief you were able to have the radiation, good for you.
Sarah, would they try Stereotactic Radiosurgery? That's what my daughter got, so it's more precise, and less tiring. Is it a possibility?
0 -
Good morning everyone! (it's still morning here, but just barely) Slept in this morning for a while & am feeling a bit better being home in my own bed. Had a bit of a restless night, couldn't stop thinking about the MRI & how claustrophobic I am, but I guess I can take something? I'll have to get on my Dr about that. Xanax? or?
Arm is pretty sore this morning. I think I remember Annie saying that happened when you had rads? It's all a blur right now. I'll be glad when this stupid week is over!
Last time I read, Linda wasn't feeling good from pamidronate, did that finally subside?
No guilt Terre, glad that you had good news, you've been having a tough go of things for a while. Enjoy!
Xavo, the traveling part should be ok, it's the ferry lineups & time wasted that starts to get to me. They've messed about with our ferry times so it takes me almost a whole day for a 15 minute appt. If you feel like DF would be the best, then I certainly wouldn't think twice.
I keep trying to go back & read the previous pages & then post to everyone but I keep losing my posting. So I will just go back & read. I hope everyone is doing well, I wish everyone was doing "KCM well" (semi- remission)
Hope everyone has a good weekend, I'll be in & out as I feel up to it. It's my infusion tomorrow & I always feel like crap for a few days.
hugs to all, cheers, Dee
0 -
Thank you all for the kind words. Very sweet of you!
Hope your infusion goes well, Dee. You're certainly going through the mill right now.
Ask for a Xanax for the MRI. They should be happy to give you some.Hope everyone has a painfree happy day!
Terre
0 -
having my 8th irradiation today for my recurrence & bone mets. Taking low dose of Xeloda chemo pills during radiation also. Have to go to hospital today to have fluid drained from lungs - a little nervous. Anyone have this issue? Is the fluid build up from the mets? Does it hurt to have it drained? Will it likely keep happening?
0 -
Hi Lana,
I know one of the women on the New Zealand page has had fluid drained. It's not a comfortable procedure from what she said, but she also felt much better afterwards with the fluid gone. Sorry you're going through this!
Sending hugs,
Terre
0 -
Lana, Two years ago, I was dxd with MBC with mets to lung. At the time I had a large effusion to the pleural lining of my lung. The surgeon performed a VATS procedure...small incision with visualisation of lung via smaller instruments. All was very effective and very small drains were left in for a few days to give a good recovery time. Healing time was uneventful and I have done well. Ask your doctor about the VATS proceduere.in your case. Sending hugs. Peggy
0 -
Lara,
I had thoracentesis twice almost five years ago and had very little pain. It was ultrasound directed, which might have helped, and it really improved my shortness of breath. After I was finally diagnosed with bc, my doctors planned a pleurodesis procedure along with the lung biopsy. Pleurodesis adds talc or other irritant to prevent further accumulation of fluid, and I was told that it could be pretty painful and also required drains to remove existing fluid. In my case, the pleura had adhered to the lung on its own, which frequently happens after a few thoracenteses, so I was home the same day.
Terre,
I haven't written much lately, since my treatment was so much up in the air, but things are looking a bit better. I was on faslodex after arimidex stopped working (after 45 months, not so shabby) but the scan in April after we got back from our incredible Australia/New Zealand cruise showed bone mets had grown and spread and new lesions in the liver, so I went on to xeloda, my first chemo ever. My onc has adjusted the dose downward twice because of problems with hand foot syndrome (HFS), and it really irks me to have to cut so far back on walking and exercise. That day we met in Wellington we logged 9 miles on my pedometer/watch and enjoyed every step!
The good news is that there is evidence that HFS is an indicator that treatment is working, and my tumor markers are down in the 30's. I have scans July 1, and mo appt. July 3, so I'm hoping to celebrate the 4th big time. I'll let you know how it goes.
0 -
Lana, Ijust re read your post and missed a few important things. The doc will numb up the area where the small incision is and should not hurt...let them know if you feel anything. So that the pleural area of the lung is less prone to refill with fluid the adjacent interior rib area is gently sprayed with sterile talc to encourage the lung pleura to settle back close to the interior rib space. All this is done quickly and I had mild meds so had a nap while they worked. I hope that this helps and that you have a very successful Tx. You should feel much better with it all. Peggy
0 -
Carpe_Diem - so good to hear from you! I am trying to get something shipped to you.
Glad that things are going a bit better, but sorry you're having HFS and chemo. Sending hugs to all,
Terre
0 -
Don't know that anyone would want to be in Wellington today....bit of a mess up near our house. My husband's shot of the paddock next to our house. The cats are watching the ducks.
http://s1286.photobucket.com/user/pixelsaurus1/media/Kapiti Flood/ThePond_zpsoabcdldy.jpg.html
0
