Bone Mets Thread
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Hello all,
Just piping in on the topic of radiation. When a rather large lesion was found in my humerus my orthopedic surgeon sent me to a rad onc to radiate the met to kill the cancer cells so the bone could heal itself. The simulation was done and I was going to receive a single treatment to that met. Upon reviewing my scans the rad onc called me back and said we should treat all my mets, 4 in total with "curative intent". They used a combination of Cyberknife and Stereotactic Body Radiation Therapy. 5 treatments in total to each met. Turns out that when they re-did the simulation scan for my new proposed treatment the radiation oncologist noticed a second spot in my sternum. He incorporated this area into the treatment plan so I had 5 areas radiated. Cyberknife is a high dose radiation that targets the tumor directly and the drop off of radiation to the surrounding tissues is steep, so less of the healthy tissues and surrounding organs are affected. It's quite amazing and aside from extreme fatigue and some tumor flare pain it was pretty easy. I won't be re-scanned to see how the treatment worked til February but the intent was to kill the mets, pain relief would be an added bonus. I hope this helps. So yes as Caryn mentioned the idea behind this is to render the mets necrotic. And in my case they used this in multiple areas.
Hugs to all, Annie
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Annie,
That sounds like your docs have a good plan. So my question still remains...why aren't more bone mets treated with intent to render necrotic?
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Caryn,
I'm not sure what the answer to that question is. When I spoke to the radiation oncologists at the Cancer Centre they said because I was young we should get aggressive with the mets because there were only a few and still relatively small. He said doing this could give me a long period of being progression free. Of course I was up for that. And with using Cyberknife and Stereotactic Radiation which targets the tumor directly I would have received less radiation in total than if they treated just 2 of my mets with one treatment of external beam radiation therapy. He also said that with this type of radiation, the area can be re-treated if need be. I pray my mets are now necrotic! I did experience some esophageal issues with the rads to my sternum but they were short lived.
I will have a follow up with the orthopedic surgeon as well to see what effect it had on my humerus. Hopefully I will not need the surgery. He has set up a Bone Mets clinic within the Cancer Centre and is organizing it so that the surgeons, oncologists and radiologists can meet together and discuss their cases while all in the same room. I thought that was a brilliant idea. He said too much info gets lost through phone calls and faxing
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Annie, I'm not sure how different we are in age, but when I got BC, I was considered young because I was under the age of 50 & premeno. I am definitely going to ask about this, I think I have 5 or 6 mets, I can't remember off hand, but certainly the ones in my spine are giving me grief at the moment. Now on my last bone scan they said that it looked like there was no progression & maybe healing but they said it was hard to tell. Does she think that I wouldn't get any further benefit from the rads? Is my onco is thinking she is saving me the travel to & from Victoria which is about 6 + hours return if she doesn't believe there is more benefit to rads & AI's? Who knows? But it's an interesting conversation & I will be having it with her.
Caryn, it's an interesting question of why bone mets aren't treated with rads more? I know that you have done well with your met & I'm hoping for Annie's sake that she does well too, especially after the crummy way she felt through the process.
If anyone else wants to chime in, I certainly would like more info (or ammunition!) for my onco! Cheers! Dee
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Dee, I am 49 years old. I had 5 mets in total that they treated. I had to drive to the cancer centre everyday for 2 weeks. It was very tiring but I had the support of family and friends who took turns bringing me. The drive was over an hour just to get to the hospital. The treatments were long, 2 hours for the Cyberknife to my L5 and rib and just over an hour for the Stereotactic rads to my sternum and humerus. So between the travel and the rads it was an all day affair. I'm thinking it would benefit you to stay in Victoria til your rads were done if you decided to go that route.
In Caryn's case I also believe that the rads to her femur that rendered her met necrotic is part of the reason why she is doing so well and I do not understand why they're not using this more. When my rad onc said they would do this with "curative intent" he explained that even though this is not curable per say, trying to kill these mets and gaining some local control of the disease can give you a longer progession free period. I pray it happens for me. I wish now someone would have offered this option to me when the solitary met on my sternum was found. Not sure if it would have made a difference as the other mets may have already been lurking under the radar.
It's all so confusing but we're so lucky we have each other to compare our treatments and bring this information and questions we have to our doctors. Knowledge is power! I for one am so grateful to have found all of you!
Hugs to all, Annie
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terre - glad dh is home and a nurse can stop by your house to help. Sure beats staying at the hospital. I guess "grumpy Gus " is to be expected.
Dune - glad you finally officially switched mo's. Being uncertain and not completly comfortable of trusting in our mo is very stressful. Hoping your new mo is exactly who you have been looking for.
Shutterbug. - your green heron story brought years to my eyes. To think dh sold some of his things to get this for you is remarkable. He sounds like a keeper.
Carpe diem sorry to hear of your progression.
Dlb - hope all is well with you.
I am feeling much stronger. But have been in nearly constant back pain since hosputsl stay. So choices are: take pain meds and sleep the day away or take nothing for pain and cry the day away. Neither is good for me or my family esp ds's. Have had severe back psin for over 1 1:2 years. Have had several procedures but seems one step forward two steps backward. So very scared this will put me in a wheelchair for whatever life I have left. I so don't want that. As I guess none of us do. Before hospital stay I had added a new med and was finally enjoying a lot less pain. I thought just the lating around in the hospital bed and thN at home had made it worse and as soon as I got up and around the stiffness would work out. But not so far. Hoping I didn't get another Compression fraction from all that vomiting. I have had like 10 compression fractures fixed in the last 1 1/2 years. So very ready to be able to be the wife , mom, friend I want/need to be.
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freebird - hope falsodex is working for you. Haven't seen you post in a few days unless I just missed it. Hope you are ok
Romansma / hope your break from X was good and you got to enjoy Christmas with the family.
Hugs to all I missed
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I want to chime in on the radiation. I have one met to my shoulder and I also got the Cyber Knife treatment for it. My tumor was 4cm and I had three rounds of CyberKnife. It was not the most horrible treatment, but it was really uncomfortable having to be perfectly still for the 2 hour treatment. My pain has decreased 90% but I have no idea if the tumor is dead or just diminished. I have my next scan in Feb, so I guess I will know more then. They did tell me they went directly to rads because of my pain, but the objective was to get me to NED. If we can kill this tumor, the hope is that I will remain progression free for a "long time." I think all these docs are taught to tell us bone mets folks that we can live a "long time" with no frame of reference to what that means!!
I was 44 when first diagnosed, and 47 now with mets. Hope this info helps!
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Dianne, I think you are very right about the "long time" bit. My ex onc told me she had a stage iv patient who has had no progression for 7 years while on anastrazole. The nurse at the new onc said they had a patient who stayed stable on one hormone blocker for 1.5 years. That quietly burst my bubble. I was shooting for the 7. Also, they have no cyberknife there. I will still ask about it. I can't see any reason for them not to allow me a referral to another place for that. I have a node that got enlarged to the point that I saw it in the mirror. Also additional spots of pain. Sorry if I already mentioned that. It's kind of a bummer and I hope the scan next week shows no progression. I was a dummy. I waited until I had one oxycontin left before going to the pharmacy to refill it. They can't order it until Monday, so it won't be ready until Wednesday. Oh goody. My bad.
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Annieoakley I look forward to hearing good news from all your scans and bloodwork. That cyberknife intrigues me, and I have been anti radiation until the stage iv dx.
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Dune. - hope you are pain free until at least wed - forever would be better. Is there a different pharmacy you can go to ? Wed sounds like a long time
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I wanted to chime in about using radiation for bone mets. I was originally stage 3 for almost 5 years, then we found one met on my pelvis last year. I was treated with stereotactic radiation and had 5 treatments. We also switched my drug from Arimidex to Faslodex with Zometa. My scans 3 mos later showed healed bone from metatasis with NED. My radiation oncolologist believes that limited bone mets has a possibility of being cured and should be treated as such. This opinion is very subjective and many do not agree. I think there is more radiation oncolologist that believe this than medical oncologist and that is why not all are being treated with radiation. I think everyone should see a radiation oncolologist for their opinion. I don't know how long I will stay NED but I have remained there for a year. Best wishes to everyone.
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I'll be fine Patty. I have Oxycodone and lidocaine patches. The pain level will be tolerable-- I hope. Next time I won't wait until the last minute.
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I was also treated with radiation (28 zaps of external beam IMRT) to my one spinal met at the same time as to the chest, axilla and supraclavicular area. My case was discussed at tumour board meetings which included MOs and rads oncs. I also had a second opinion in the U.S. where the same type of rads was recommended. What I had is probably no longer the latest technology but I seemed to have benefitted from it given it's been almost 7 years.
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diannenc,
I don't know if mo's are "taught" to tell bone metsters that they can go a long time. I think that just may be based on their experiences. As for what "a long time" actually means, it it rather vague, but I'm fine with that. I know I would have a much harder time coping with things if I had a definite expiration date stamped on me. This way, I just keep on keeping on and that's helped me maintain a good outlook and a fairly normal life. I do joke around a lot with my dd's however. For example, if they admire something that I have, I might say "ok, I'll leave it to you in my will." Younger dd thinks this is quite funny, older dd? Not so much.
Dunesleeper,
I hope you get your pain meds soon! I know chronic pain can be crippling in the broadest sense of the word.
Although I said I credit rads with halting progression of mets, in reality I know I can't say that with certainty. Still, it seems like an under utilized tool, especially for those who have oligometastases (which is a whole other, controversial, discussion).
I hope everyone else continues to have a peaceful holiday season (after one cup of coffee, my brain is not fully engaged enough to remember everyone by name. My apologies.)
Caryn
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Heidi, I seem to remember one of your posts talking about rads and using them to gain control of your mets. I think you referred to it as using local measures, which is basically what my rad oncs are saying. Wow 28 zaps sounds like alot, how did you feel afterwards? I'm still having some post - radiation side effects after 5 treatments to each, however like Dianne said it's a 2 hour treatment. One day I decided to count the zaps to one met and it was 60 times, but the Cyberknife slices into the met at different angles, delivering the highest dose of radiation directly to the tumour.
Dianne praying our mets have been blasted into oblivion! I agree laying there for that long and keeping still was the hardest part of the treatment. I felt like I had become part of that table and felt extremely stiff afterwards.
Shutterbug73, when I read the story of what your dh did for you I literally broke out into tears. It really touched my heart, what an amazing act of love. God bless him!
PattyPepper, my prayers are with you and hoping your pain will diminish quickly and that you'll be feeling a little more yourself very soon.
Dunesleeper, hoping you start to feel better soon. Pain is a constant reminder of our battle. Praying it eases up for you very soon.
Hugs to all, Annie
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Thanks all for chiming in. I'm going to insist on a meeting with my RO when I next see my MO. I don't know if I would be able to have SR to my sternum as I had rads there the first time around. I don't want to go into her office on the offensive, but want to have as much information as possible. She's a well respected onco & is known to go to the mat for her patients. Luckily my back is not bothering me as much today, I may have done too much garden work in the last few days.
Patty & Dune, I hope you are both feeling better & in less pain soon. Pain is so hard to live with.
Cheers, Dee
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Well I wrote this big long note and somehow it went blank when I tried it. A friend of a friend had stage 2b at the same time I did 2 years ago it came back stage 4. They said there was nothing they could do and she passed a month ago.
My onc told me that if it metastisizes it would most likely be in my bones. I have had chronic back pain since cancer and have a pain dr. A few months ago I found a numb place on my hip about 3"x4". The onc said to go to my pcp and get it X-rayed. All that came back was arthritis in hips and back and they are scheduling mri.
I was just wondering if anybody knew about the number place.
Thank you
Love you all very much!!
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Hi All, I just had scans again on the 23rd. I waited for the DVD of the scans afterwards and plugged it in when I got home. The CT report was already on there. It would appear the lesions in my liver are shrinking and the tumors in my lungs are as well. However, I can see much more progression on the bones. I've already had the right hip and right femur radiated (along with my brain). But, it was to relieve pain. Which it did, thankfully. I have so many bone mets I believe it would be futile to try and radiate them into a necrotic state. That being said, every case is so different than the next. It's important to have a team of Dr's that you have faith and trust in, and of course to do your homework....research and ask questions
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In addition to multiple bone mets, my radiologist also noticed I have cancer in the bone marrow of my right femur and it has become increasing difficult for me to walk over the last couple days. Stars are almost impossible at times. Is bone marrow cancer like pre bone cancer and what do they do for it. I'm afraid I'm going to be crippled as well as having back pain. has anyone else ever had this. Right now I'm on Femera and Xgeva but I need to get a real plan in place. i really want to meeting with another Oncologist who works in a different office as my Oncologist but is part of the same practice. I'm afraid of hurting her feelings. Am I insane or what? i really don't know what to do after being diagnosed for three months.
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Hi MissA, that's a concern of mine as well, almost my entire spine is affected. I worry sometimes in my quiet moments that I may end up in a wheelchair someday. But, then I have to pull back and not let my overactive imagination get ahead of me.
I believe it is your right to get as many second opinions as you desire. Your Doc can not take it personal, as it is your right. You need to have a Doc in place that you are comfortable with and trust. I'm fortunate to have had that twice now (the first one retired). So, go ahead and make that appointment
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They are professionals and will not take it personally. You may even find they are happy you are getting another opinion. Mine was.
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Missingalley - About 2 months after dx, I informed my Onc I was seeking a second opinion. She was very receptive and understanding and even cooperated with the second Onc. It was quite reassuring.Linda
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missing alley,
Any competent professional will not only understand, but support your seeking a second opinion. I am sure your mo is a nice person, but your relationship is professional, not personal so hurt feelings should play no part in your decision to get a second opinion
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I wonder if I would have been better off had they radiated the one small met I had in my sacral area. It didn't entirely look like cancer and was not in a good spot to biopsy so they proceeded with stage 3 treatment with 12 x taxol and 4 x ac-after which the spot was completely gone and they say showed as healed. I asked my MO when it comes back if he thinks going out of the area (like Shands in Florida) would be something we should consider. He said if it comes back we'll discuss it. Feeling better now that I am done with chemo/mx/radiation as of mid-November. Now I am just more tired than usual, but maybe that is just residual from radiation or my getting used to aromasin. Still working and playing though! Hope everyone has a beautiful day.
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Screech, is that the only met you had that gave you a stage IV diagnosis? Glad it is healed after chemo but just wonder why they re-staged you if they weren't sure it was a met. I had a solitary met to my sternum and they weren't positive it was a metastasis until they re-scanned 3 months later and found a few more areas. That's when they staged me at IV. I've just finished radiation to all the mets and still recovering. I had a very scary incident night before last. I guess my esophagus has been irritated from the rads to my sternum. I woke up choking on acid that crept up my esophagus and I could not breathe. Freeked me right out. I am taking Pantiloc now to keep the acid down. I was afraid to go to bed last night, so I propped myself up with 3 pillows. Thank God it didn't happen again. It was so frightening, I thought I was going to choke to death, the acid was burning and when I talked to the hospital they said I may have aspirated some into my lung. Feeling better today. Radiation does make you tired though and I am taking letrozole and it's been hard on me. I'm praying it'll get easier with time.
Hope everyone else is feeling well. It's been a little quiet here. Wishing all of you a great day.
Hugs, Annie
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Annie - Oh that must have been scary and very uncomfortable! but glad you're feeling a bit better. How is your pain level? Are you taking anti-inflammatories? I take them everyday and it can be pretty hard on the stomach so I take Pantoloc everyday. It' certainly a SE of rads but worse if combined with pain meds. Letrozole got easier for me with time with minimal SEs now. Take care.Linda
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Annie-yes, that was the only thing they saw. They said that because it completely responded to the chemo that is was 95% chance it was a met. That being said, they continued with my operation and local breast/chest wall radiation to hopefully get control of the local mess and also in the slim chance it wasn't a met to do standard stage 3 aggressive treatment. I am currently on aromasin and a monthly zometa infusion. I was scanned in August (showing the met gone) and will be scanned again prior to my March meet 'n greet with my MO. My RO and primary care physician are of the opinion that the game for me now is no recurrence like I was a stage 3. The surgeon and MO are more conservative in their opinions-but they both are optimistic that I should be ok for a long time and that there is a good possibility that there will be something in that time that turns this into a true chronic illness. Of course, there are NO guarantees. What happened to you must have been very scary but I am glad you are better. It's weird-I had virtually no problems throughout all of the chemo-worked everyday during, I only took seven days off work for the operation, but the radiation did a number on me. My skin stayed pretty good, but man, fatigue and feeling off in the appetite department really did a number on me. I am still tired and still not 100% and I finished rads before Thanksgiving. And they said that would be a walk in the park comparatively...0 -
I hope this comes out right. I posted something a day or two ago and it hasn't been answered yet and I'm really concerned about the matter and I know that everything that gets posted on this thread is extremely important but I would really appreciate it if someone would get back to mine on page 154 andand give me your opinion. Thank you so much and you're all so wonderful and I pray for all of you.
Trini
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