Bone Mets Thread
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aaoaao, 24 taxol, I'm impresssed you are tolerating well for so long; I'm hoping for same . I'm heading into #12 on Monday and no end in sight. You commented your mets are not widespread; do you mind sharing where you have mets? Mine began in bones, now in liver too. Thanks ...
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Fortunately, I only have one large bone met to a L3 vertebrae, there were a couple of small spots on my pelvis. However, my MO thinks they're not mets but some healing from previous injury. I don't remember ever injuring anything there but who knows. I had 10 sessions of radiation to my tumor which stopped the severe pain I was experiencing. She said she wants to be aggressive because of my lone met, my age and health condition was strong enough to take it. I guess there's a belief that if you only have one met, especially in the bone, that hitting it hard with chemo may put you in a remission state for quite some time. I'm was and still am willing to give it a try. I'd love a chemo break but if my MO feels that my numbers warrant me staying on it for a while more, I'll do it. So far, it seems, that the Taxol has kept my cancer stable for the past 7 months. It's not a long time but everything counts.
I hope you do well on Taxol too. I really can't complain too much, except for the fatigue, appetite loss, constipation, and nail issues, I'm not doing too bad. The SEs are just building up and lasting longer and stronger because of the number of sessions I've done. I've just started to get painful neuropathy of the fingertips and am dropping things more often. I thing that is why the MO feels I need a break. For me Taxol was quite doable. I really wish that you have a great outcome with it too.
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Thanks, aaoaao.
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canadagirl, I had to go off Aromasin because the joint pain was so bad, and no amount of painkiller would help. I was on Fentanyl patches and Oxycontin because I have Stage IV cancer in my bones and lungs and the tumors are very painful, and that medicine didn't touch the joint pain, which was a side effect of Aromasin. I felt it down to the smallest bones in my hands and toes!
It's not worth it, it just isn't. I had remarkable regression on Aromasin, and it was a HARD decision to go off of Aromasin, when it was helping me LIVE, but I was 48 and I could hardly move! I felt better within a week after going off the meds. I honestly wonder how many women secretly stop taking the medicine because they can't handle the side effects.
Doctors who advise exercise don't understand. If you have MODERATE aches, then exercise can help, but if you have SEVERE aches, exercise will NOT help. The reason it won't help is because estrogen lubricates the joints and on Aromasin you lose the lubrication, and exercise doesn't add more lubrication to the joints. The only thing that brought me relief was soaking in a big tub with epsom salts at night, but the relief was only temporary, for an hour or so, enough so I could get to bed.
These medicines we take are heavy duty, serious stuff, and the side effects can be debilitating. There ARE other options. None of us should suffer in silence, or accept from our doctors that we have to put up with it. There are many treatments out there. Quality of life matters, especially when someone has Stage IV. I'm not going to spend my remaining days in constant pain.
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aaoaao, if you don't mind my asking, how big is your bone met? I'm surprised by all of your chemo, (but I only know my experience, which is why I'm asking) when you say you have only one bone met. I have lots of tumors throughout my lungs and bones, I think the largest are about 1 cm, and my doctor has been able to keep me away from chemo. My cancer is slow growing she says (even though when I have progression, it doesn't look slow growing to me!) so maybe yours is fast growing.
You seem like such a wonderful lady and you've been so helpful to so many women here, including me. I guess it's just silly to say "It's not fair" that you are still on chemo. Because cancer isn't fair to anyone. But I am hoping and praying that the medical evidence your doctors see is enough to let you have a chemo break.
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Hi aaoaao - sorry to hear about the dangling carrot. As they say here in NZ - Bugger! I'm beyond impressed by 24 rounds of taxol - wow! Hoping your numbers are great and you get that much deserved break from chemo very very soon. For me, the waiting is always the hardest part, so I certainly empathise. And you're right - this is a great place to vent, discuss, share, etc. So grateful for all of the support I get here.
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Sorry about the weather and the appointment postponement. Moving, for me, is the only way to keep joint pain at bay. When I wake up or sit for too long, I really stiffen up. Keeping moving and active is the best thing I can do. I teach first grade, so I move all day, then come home to walk my dogs, clean house, yoga etc. Not moving is what makes things worse.
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Thanks everyone for the support on my chemo rant.
Thank you Rhonda for the complement. I never got my reports with a specific measurement. The radiologist did show me the scans on the computer and the tumor was rather large. It wrapped completely around the left side of the vertebrae and was pushing on the spinal cord. The spinal cord was very clearly curved outward. It looked as if the entire left side of the vertebrae was covered with a tumor. They never said if it was fast growing or not but it probably isn't a slow growing tumor because I started feeling extreme pain in my back in early 2012, so it was already pushing on the spinal cord then. Since I finished chemo in September 2010, it only had less than a year and a half to get that large. I need to be more demanding on getting my scans. For some reason I thought the doctors only kept them. I get my blood test results online but the scans data are never there. I'm going to ask them to provide me with a copy of all my scans this year.
I don't know if I needed to be on chemo, I think my doctor just wanted to hit it hard. I have noticed that most ladies here with mets seem to start on hormonals and the chemo is saved for later. So I was concerned that maybe my MO was being too aggressive and the damage to me might be unnecessary at this time. However, my 2nd opinion, from the University of Chicago, agreed with her treatment plan and said that eventually she would take me off chemo and put me on a ovary suppressor. But she also felt that being aggressive at this time was the way to go. Someone here suggested that some doctors think that if you have one met (oligometastatic) that being aggressive could put you into a possibly "curative" state. I don't know anything about that and my doctor never mentioned it. I personally think that once the cancer cells migrate they're in the blood stream and it's never curative. I'm not going to lie, I was and still am a little worried about doing chemo so early and for so long. I think I will be getting that break though because the side effects are getting worse. My MO feels that the break will be a minimum of 3 months and then she will scan again and if there is no progression and my numbers are stable she might keep me on the hormonals as long as possible. So I'm hoping for no progression so no more chemo for a long time.
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aaoaao. Wow 24 taxol so that's pretty impressive. No wonder you are looking forward to a break. I've just had no 17 this week and am finding the fatigue starting to get to me. I know my Onc wanted to start me on chemo not hormonals first when I was diagnosed stage 4 because he is concerned my cancer may have developed a resistance to tamoxifen after over 10 years on it. I had stopped tamoxifen about 12 months before they found my mets which were quite extensive. I know he still wants to move me back onto hormonals at some stage. I guess like you they are waiting to see how well I respond to the taxol first. So far it's having a great effect on my lungs but there has been a small progression in my bones.
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Hey Shaz, 17 sessions is pretty heavy too. I believe the buildup of side effects do get to be too much when on a particular chemo so long. I actually had my recurrence while on Tamoxifen. That also may be a good reason my MO wanted to go the chemo route. I've done really well on the Taxol, no further progression so far. One of the reasons my son was worried about me stopping the chemo is that it's been working. He's worried I'll have progression just on Aromasin. My MO assured him that any signs of progression and I'm back on chemo. She plans on doing scans every 3 months and antigen tests every month when I go in for my Zometa infusion. I think I'll be fine..I always try to be optimistic. I feel I do need to take the risk and have a chemo break because I know damage is being done to me, my body just seems to be worn out.
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Well ladies, after hearing about 24 and 17 taxol tx, heading into #12 next Monday is nothing, in comparison! I will forge ahead! If you can do it, so can I! The most encouraging part of it all is the positive responses you've been experiencing.
Pls. keep us posted, as I will. Next scan end of Feb.0 -
Back from the onc and it's onto a new treatment for my mom. The onc said that he believes the partially collapsed vertebrae on the last scan is from the cancer and not bone degeneration. Her bone density test was normal. Not even a full year out of the Aromasin. She's disappointed but it's not a surprise after the previous appt. I didn't sit in on the appt this time and she didn't bother to ask for names, but he is trying to see if our health coverage will cover the next treatment and said there were 2 he could try for but they're both very expensive and may not be covered. She should know this week for sure but if she isn't approved then he said she "will need to go in for chemo infusions instead" (her words). Any idea what expensive treatments he may be considering? Faslodex? What does one go to when Aromasin, Femara, and Tamoxifen don't work that isn't chemo? I know there are a few of options I have read about here but with what little she told me I am trying to narrow it down so I can research them for her. Any ideas?
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I am experiencing severe physician fatigue. I get Xgeva every month. And it's a pain in the ass. Here's my question: does anyone get Xgeva every other month? Had anyone ever tried it?
Scorchy0 -
Afinator is another one, Canadagirl, It is very expensive, Best of luck to your mom!
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Thanks Redroan! I just figured it out. He had referred to it by another name and after trying multiple spellings it came up in my Google search
I guess Afinitor and Faslodex are his first choices for her if they can get approval. Fingers crossed!0 -
Scorchy....I get Xgeva every 6 weeks. Definitely something to ask your MO about.
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I get Xgeva every 3 months. I was getting it every month but didn't see that it was doing anything. And my doctor was fine with me reducing my dose. It doesn't seem like doctors really believe Xgeva helps much. It just doesn't hurt to try it. How does one know it's actually doing any good?
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Getting my 5th xgeva shot on tues with my falsodex shots.At the same visit they also draw blood and run a few tests. Had a pet scan the other day and will speak with the onc about the results before the shots. My last pet scan showed no progression and the tumor markers last month were good as for the fatigue I guess that I am fortunate that I can work from home and fit a daily nap into my day.
@Canadagirl re:expensive drugs Amgen the manufacture of Xgeva has a program for patients to help pay for it. They call it First Step Co-Pay Coupon Program more info at amgenfirststep.com
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waiting for pet scan results sucks!!!! This is my first one and I am so nervous!!
just needed to vent , hopefully tomorrow!! 0 -
I used to get Xgeva every month- did it for two years- but I'm now on a quarterly schedule. It's to prevent bone loss,similar to Zometa. My onc and I do feel it helps, actually, as I've had a lot of healing in the last couple of years.
Canadagirl- I hope Faslodex is approved for your mom. It has really kept me stable for over 2 years with minimal side effects.
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I get xgeva shots every 4 weeks. I'm also wondering whether it's working, because in the last month I've developed 2 more herniated cervical discs (3 in total) and have had 2 spontaneous hairline fractures in the same leg. I have a bone density scan scheduled for next week, so hopefully I'll know more then.
Kate, scanxiety is the worst! No matter how good our numbers are, and how well we think things are going, we're always going to worry about the results. My fingers are crossed for you; I'll be waiting to hear how you got on.
Nicky
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Thinking of you Kate, and sending positive thoughts for good scan results...and quick!
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I get xgeva monthly. Just had my 3rd injection on Monday. I was dx with bone mets to back,spine,
Collar bone and shoulders. I've been on letrozole since early Oct. the se for me was dizziness
And nausea. Some of the ladies here started taking their letrozole at night. I did also, usually
Around pp6 or 7pm. I'm usually winding down my day then so I only experience the se for a short
Time. But some evenings my shoulder aches excessively.
I will be getting my first bone density, colon, and pelvis scans since being dx in Aug.2013.
That will be Feb 3. I am nervous just thinking of the possibilities. I have had no breast surgery
or chemo since dx and I've noticed most of the stage IV ladies here have. I have tumours
In both breasts and my onc. Feels they have become smaller since taking the med. Feb.3
Will tell.
Thanks for letting me share. Wishing everyone a pain free evening💐
((hugs))
Barb
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My dentist says the the Xgeva makes the environment in the bones "inhospitable" to cancer cell growth and that is why they use it. My oncologist said that they use it because the femara weakens the bones so this is to reduce "skeletal related events". He says he uses it for two years and then stops because he does not think there is enough data to show that the benefits outweigh the potential side effects for people on it more than two years (I guess they only tested it for two years?). I have had 8 doses, one a month, so far.
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@Safetyyfirst. I am like you - no surgery. I also was diagnosed with stage 4 from the get go. They wanted to get my disease under control first and then said it would be up to me if I wanted to have the primary tumor removed. I originally thought I would want to do that for sure. A couple months ago, I started to address it by conversation here (go back a few months to see the string) and talking to my oncologist. I have decided not to pursue surgery for now. My oncologist does not feel there is any clear benefit to the surgery and for me, it feels like something else that my body will have to recover from. However, if you read the string - you will see this is a very very individual decision and there is no wrong answer. Whatever you decide to do is right for you! Like you, I have noticed that most people here seem to have a lot of scans. My oncologist does not do any scanning unless he sees a rise (two months in a row he said) in the blood tests for tumor markers (luckily, I am one of the people for whom these markers are informative - he said that they are not informative for everyone) or, if I have pain (that has happened), or recently when I asked about it - he said if I really want scans he will do them. However, he does CT scans as opposed to MRI unless there is suspicion of something a CT scan would not show - and I don't want the radiation, so for now, I am not going to ask for them. It does worry me a little that I could have cancer growing somewhere else while it is going down in the bone and the net would show no increase in the blood markers. My oncologist said that the uncertainty is one of the hardest things for people to deal with in this disease. So, I guess I'll see how it goes. I would really like to have another breast MRI to see if the primary has shrunk or what it is doing and that would also maybe show something about the cancer in my sternum that was the original clue to the bone mets. He is not a fan of PET for monitoring. Says it is a great tool for initial diagnosis but is not very quantitative so he does not use it to follow people. It is really interesting how much variation there is between doctors. Hopefully you feel good about the one you are seeing and are able to trust his/her recommendations. I like my oncologist so have decided I will let him guide me. I have been on letrozole (femara) and Xgeva for 7 months now and my numbers were always dropping or level until last month when they started to drift up. I am working REALLY HARD not to panic and to wait calmly for next months' numbers. I really hope I can stay on this protocol for a LONG LONG time (like years) before I have to move on to the other treatments (like chemo).
With regard to your discomfort after the Xgeva. I had none after the first injection, a lot (to the point of limping) after the second - but we also eventually found a fracture in my pubic bone which was contributing and then the next couple months I feel yucky (out of it, light headed, tired) the day I got the injection and OK by the next day. The last few months have been totally uneventful without even any fatigue. SO HANG IN THERE - it may get easier to tolerate!
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20130502,
I was on Aredia (Pamidronate ) for two years and then my mo stopped it as she felt the risks outweighed the benefits. There was some evidence that bisphosphonates did create an inhospitable environment for mets to spread in the bones but there is not current evidence to support this, so many mo's are using them for limited periods of time. Though both ONJ and spontaneous femur breaks are low incidence se's, the chances of experiencing them goes up the longer you stay on the drugs.
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Hello everyone!!! I am happy to announce my pet scan is in and Ionly have the lone mets to sternum and two inflamed lymph nodes!!! Radiation I start next week will zap those and shrink the sternum tumor..... I will have hysterectomy on February 7th. Ready to be post menopause and get these hormones out of my body and start HT. Thanks for the positive vibes and prayers!! I got this!!!!
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Kate, Sounds like good news and a good plan, Best of luck, Redroan
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@exbngirl. if the bisphosphonates do not help treat or slow the cancer why do thy use them? My mets are in ALL my bones. Skull. Spine. Ribs. Sternum. Pelvis. Femur. You name the bone and it lit up on the PET scan. At least they are not yet in my other organs.
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20130502 - The AIs do work for most people just not all. Those that ER+/PR+, HER2- ussally respond well to the AIs. When those stop working then you move on to chemo which can be in pill form or and IV. I started out on Femara and had great results for almost 3 years before it stopped working for me, then I went on Tamoxifin which did not work so now I am of Xeloda which is not and AI and is considered a chemo durg.
My mets are in my bones, liver and lungs, the femara cleared up my liver and greatly reduced the cancer in my lungs and stopped the progression in my bones. When that changed and my last PET/CT scans showed there was some progression in my bones and there were new leisons in my liver is when I was swithched to Tamoxifin and when my tumor markers kept going up even after some radiation on painful bone spots I am now scheduled to start Zeloda on Monday. I have another PET/CT scan on Tuesday to verify how much progression there was in the 6 months I was on Tomoxifin.
Hope you have a long sucessful run with the femara, I know it was a lot kinder to me than the Tomoxifin was.
Joy and blessings, AJ
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