Bone Mets Thread
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Yay JoE! 🎉😀
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I take Ondansetron every day and have done for months now as its the only anti nausea drug I can take...why do you want to avoid it Onco Warrior?
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I have mets to my spine. (xgeva for 5 mos. has not stopped the growth) I'm on taxol chemo which totally resolved my numerus small lung nodules and has shrink my breast tumor by more than half in just 9 infusions. Thank you God.
But, it's done nothing for my mets in my spine. I have 2 compression fractures from Osterserrias (sp) The 10T area is starting to worry my ONC. He's worried about a break (??)
So he's recommended a consult with a Radiologist. Could someone tell me about radition therapy. Can it be done along with my Taxal tx? How do they decide how many treatments you need of radiology?
Thank you so very much
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Hi snooky, I am going to start radiation to spine soon, just had my consult yesterday. My understanding - if it is conventional radiation it will be ten treatments for 15 minutes per day, every day except weekends. The doctor also told me about Cyberknife aka SBRT which would have been fewer days, longer sessions (I think he said five days).
As far as a break in treatment, I am on Herceptin and my MedOnc will not be stopping that, although the RadOnc said something about usually people stop with infusions...maybe since Herceptin is not "chemo" but a targeted therapy, it is okay.
Here a few responses I got when I asked about radiation to spine:https://community.breastcancer.org/forum/8/topics/871507?page=1#idx_1
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Olma, Oh thank you so much, I thought it was going to be like 30 treatments like early stage. Ten times doesn't sound too bad. Do you get to chose between traditional or Cyberknife? or, does your insurance decide.
I wish you all the best during your treatment. My consult is this Fri. but (as usual) the waiting is so hard.
HUGS
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Yes, in this case my insurance decided. The rad onc explained both procedures and was willing to do either one. Said Cyberknife is slightly more effective and it focuses more precisely on the target area (I think that would mean less risk of hitting non tumor areas of the bone)
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Appreciate the link to the thread you started. Really calmed me down. Sounds very doable. I would bet that my ins. will turn it down too/if offered. You've been such a big help. God Bless You.
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Mermaid is your liver met causing you any problems, pain or health issue? I have mets in multiple places including bones and liver and we only do localized treatment for palliative purposes when something causes a lot of pain or a health complication. Since my liver mets have been asymptomatic and aren't causing me any problems, we don't do anything about them specifically since I'm always on a systemic treatment. If my liver mets were to start growing very large, affecting my liver function or causing me pain, only then would we consider localized treatment like cyber knife. An invasive procedure to remove them now when they're not causing any problems would do me absolutely no good. It's a quality of life issue. This may be what your doctor is trying to explain (poorly).
I can't see what treatment you're currently on, but usually your MO would discuss a (systemic) treatment change when you develop new mets with the hopes that it would shrink or resolve the mets.
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Lily55, perhaps we have some misunderstanding?
When I said that "I hope I do not need it", (not that I wanted to avoid it) meant that I hope I do not have the nausea in the first place.
Is this better?
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Ah I see !!! Duh.......Sorry I get brain fuzz on this.....
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Hey all.
Bump to my question about "stable" bone mets causing pain. If your bone mets is "stable" can you still have pain due to the cancer??? I posted a week or so ago about back/spine pain. Just wondering your thoughts.
Also, has anyone heard from Jaylea??? She should be having scans soon.
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I should be happy and relieved. But right now I'm just sorta zoned out. Need a nice long nap.
I had stated earlier in this thread that my ONC wanted me to consult with a radiologist for treatment on my T10, (compression fracture) Because the last two Nuc Bone scans and Ct contrast it showed the cancer growing and he was afraid that it would eat away my bone. (taxol isn't working on it)Just got back from the consult. My head is spinning
The first radiologist who interviewed me explained about the procedure (starts with a V) where they go in and burn out all the cancer and then cement it. I said yes I would like that done.
Well, he left to consult with that department. Three different radiologists looked at the scans and said that what they were viewing was not cancer! But the compression fracture healing itself. He said this must be an old fracture. He asked how much pain I was in. I said none. He said well then the cement procedure would be out anyway.
He scheduled an MRI for next week to get a better look at what's going on in there. And we'll meet the day after.
Wow, can't understand how every three months test for last nine months could have been read so wrong.
Need a nap
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Snooky is describing ablation followed by vertebroplasty (injection of bone cement). I had three spots in my thoracic spine treated that way last fall, followed by radiation. Only one area was painful. Go take your nap!
When you wake up, can you tell us whether you rec'd copies of the narrative reports from all your scans? It is interesting how different doctors will describe things. Hopefully the MRI will help to clarify your situation.
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vinrph,,,,,,,Yes, I re'd copies of the results of each scan. Nuc Bone Scan reported increased tracer uptake. Ct Scan reported increase in size. So, hopefully, the MRI will be more definitive. My ins will not pay for another Pet-Ct, had one two yrs ago and have been denied another one every time my ONC tried to order one. So, I'm gonna chill, thank GOD , and pray that this new info is correct. I'll let you know what the MRI finds.
HUGS Sue
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Candy, got your shout out, thanks for remembering! Scan results appeared on my portal but MO is out of town so I'm left to interpret them without benefit of her analysis. We meet next week so I'll get the plan then. Overall I think news is positive. My liver met is significantly reduced. My bone mets are mostly stable with a couple new spots. (I think it was snooky that said taxol wasn't working on her bone mets, either.) And of course the esophageal met did its usual hide-and-seek and was a no-show on the scans, no surprise since it hasn't shown since the beginning. But I am feeling better and slowly adding food orally. So overall I'm taking things as positive. My biggest hope is to be off the taxol. I read on another thread that a major side effect of taxol is depression. I didn't quite recognize it at the time, but the further away I get from tx, the darker the place looks that I was in.
Snooky, sounds like you're in a good place. I have a wedge-fracture on my T11, but since it causes me no pain, MO says there's no reason to take action.
LoriCA, your statement about not doing anything about your liver mets rang a bell in my brain. I've been obsessing that I have to do something about my small liver met (sbrt, Y90, aarrgh!) but now recognize that another approach is do nothing. Thanks for that.
Waving hi to everyone ~
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Jaylea glad I gave you something to think about. I think everyone's first instinct is "get it out of me", and that may make sense when oligometastatic. I'm well beyond oligo so my MO and I had a long discussion about treatment and quality of life issues up front. Good to hear that taxol is shrinking your liver met and keeping bones relatively stable and that you are feeling better.
This is the first I heard of a link between taxol and depression, but I experienced depression both times I was on it. Both times I chalked it up to my poor prognosis affecting me emotionally, but maybe it wasn't all in my head. I'm usually very resilient and I was surprised at how deep my depression got.
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Jaylea, Good about your T11. Last nine mos. My scans showed my compression fracture taking up increasing tracer. My Onc.. scared me talking about it eating thru my bone. So when the radiologist said there was little if any cancer in the T10, the scan was showing healing bone, I was dumbfounded. I so pray that the MRI shows that for sure.
I'm so happy that you can eat again. That's great. Surely that's a good sign.
It was me. I'm the one talking about the link between taxol and depression. Now I've been in and out of clinical depressions all my life. But this taxol depression was different. So luckily my ONC didn't deny what I told him and reduced my treatment schedule. Depressions easing up somewhat. There's a thread on here someplace about the link between the two.
Ten taxol treatments (so far) have done nothing for my bone mets. Howeverr, it it did work for my small lung nodules, scans say they dissipated. Yeah. Also, my original breast tumor went from 5.25cm down to 2.8. So I'm elated about that. (also the one lymph node is practically gone)
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At todays apt for Chemo, my ONC said something disconcerting. He said chemo does not work for bone mets. His reasoning is bones are hard with very few blood vessels so chemo can't get to them. I said well, what do you do about them? He said xgeva or zolmota (sp) and radiation.
This is not what I've been reading on this thread. Nanahope stated very encouraging results from 15 taxol infusions for her bone mets. (Thanks Nanahope, your story kept me going thru taxol treatments. Bless YOu)
Any thoughts? Many thanks.
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LoriCa, I've been forgetting to thank you for all your posts about how the first time taxol worked for your skin mets. Skin mets is why I started taxol in the first place. Although, I think we have different types. I had one solid tumor at first. Then a second tumor in situ (cribform) developed under it same breast. That is the one that started growing onto my skin. Started last Aug and was moving fast. The only way I can explain it's appearance is it looked like a tiny new nipple appearing exact same appearance. Over time, new little red looking nipple appeared then they connected into the classic cauliflower shape. Ended up being about the size of a silver dollar. My ONC scared me about ulcerating, and once it happened it would never clear up! (We've talked about that before and you told me that's not true, yours cleared up)
Well I'm thanking you for giving me faith in taxol! Because it has/is working on the skin nodules, in less than 9 infusions, it has stopped all new skin growth, THe itching is gone. And they are sorta flaking off. Onc said the taxol works from inside out and they would gradually go back into my breast.
Anyway thank you for giving me Hope. I hope you find a tx that will your BC down. I know it's out there.
Lots of HUGS---- Sue
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Hi snooky, good news that you're seeing some results with Taxol! Happy for you! My own opinion, I got to NED and stayed for a year thanks to Taxol, H&P and Xgeva. But I give Taxol and H&P a lot of the credit. My bone mets were not active and were healing after Taxol. After a year off of it, one met now shows activity. I have to believe Taxol played an important role in attacking the bone mets.
Taxol was very tolerable for me, too. Thank God for it!
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snooky, that’s an interesting statement from the onc, but are there studies that confirm his belief? I had neadjuvant chemo after stage iv diagnosis mets to bones. The chemo shrunk the breast tumor quite a bit. I cannot exactly remember what the scan I had after the chemo said about the bone mets but I do believe it was shrinking them, too. I can go back and look at the reports. Then I had lumpectomy, radiation to the breast and began Arimidex. Also had zometa iv every month for awhile then every three months. I went a total of eight years without any progression. In my opinion the neoadjuvant chemo was one reason i had an exceptional run without progression.
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Divine.....Yes I know. Plus I've read many on these boards that have reported the same thing.
Yesterday was chemo day, when he told me that, so it's chemo day and my brain isn't focusing that good but I sure am going to look that up and will report findings. The Onc basically told me that Radiologists handled all bone mets and he did soft tissue mets. Huh? I asked if he consulted with the Radiologists and he said no. Sooooo…..I'm really thinking its time for a second opinion here...
THanks for your reply. If I find research on this, I will definitely Post it .
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Snooky, it might be good to pursue a second opinion or even change ocologists. While it is true that radiologists (including the interventional variety) do a lot to address bone mets, you want someone who can guide you with a comprehensive approach and direct the team which is treating you.
I think that description of chemo involvement in the skeleton is too simplistic. The way mutant cells get to their favorite metastatic site is via blood vessels!
Plus, how hard did they fight the insurance to get another PET scan approved?
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vinrph, I thank you for your informed opinion. And, since yesterday, after hearing that info, heads been spinning. But I do think you're on the right track
OHHHHH, I see what you're saying. If they got there by blood vessels, chemo can use thee same blood vessels to attach them.. THANK YOU.
Bless you dear
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Besides taking letrozole/kisqali combo and zometo infusions for bone mets and lung mets ,I have had 10 rounds of radiation to the spinal and 10 to sacrum mets. I was immediately referred to the radiologist at diagnosis and was told if new ones popped up I would receive radiation to them unless I had already had radiation to that site.. We never spoke of chemo nor is it mentioned if it progresses. I would think that would be soft tissues like my lung mets or organ involvement
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oh, Joe thank you for your imput. Wow...who do you trust? Well, my MRI is in about 45 minutes and then consult on THurs. I'll sure bring up a lot of questions for that consult. They did say that if there's no pain they usually don't do anything.....What.....but what about the mets spreading from bones to other areas?
I'm so grateful for the ladies on these forums sharing their experience or I'd be a basket case.
THank you so much Joe..
Oh, thought does radiation to one area say, kill the cancer there for good? Or can it come back
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I have spinal mets and muscle (soft tissue) mets adjacent to the spine that are quite painful. Yes, there's controversy over what works best on bone mets in spine. Taxol IV did absolutely nothing for me.
Xgeva and Zometa infusions are supposed to help with the bones. Capecitabine and Gemcitabine are supposed to help with brain mets as they are a couple of the few things that will actually cross the blood-brain barrier.
L
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Sue that's great news, I'm so glad to hear that taxol worked on your skin mets. Hugs right back to you! I don't know if I mentioned it before but I've been reading about how they now suspect that skin is an immune-privileged sanctuary for cancer cells, especially in HER2+, and how they believe there's a blood/skin barrier similar to the blood/brain barrier. In the HER2Climb trial which is for brain mets, they discovered that lapatinib seems to also cross the blood/skin barrier. That drug is high on my list since mine have already returned once so far and were chemo-resistant when they returned. It's only for HER2+ right now, but since they discovered it's one of a very few drugs that crosses the blood/skin barrier hopefully they'll try it on others (possibly HER2- who have ERBB2 mutation).
As for chemo and bone mets - I had extensive skeletal mets, much more than could ever be handled with radiation unless I could convince someone to fry my entire body. My bone mets started to show signs of healing on taxol, then continued to heal on Herceptin/Perjeta. Unfortunately my bones have been the only thing that responds to H&P, but I've never been on any of those other drugs mentioned. I'm sure treatment depends on how extensive the bone mets are and how fast the cancer is growing, but I can't imagine doing a harsh chemo just for bone mets unless there are other mets too or maybe if the bone mets are causing serious complications. But I do know that mine responded to Taxol.
Lori
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THank you Snooky for your info.....and many of you....I only have bone mets but was in a lot of pain.......I have not needed any top up pain for 2 weeks now as opposed to needed two a day......am still on morphine patches though........and finding chemo really tough and now the Oncologist has admitted it IS affecting my one remaining kidney which is very sensitive to drug damage due to another condition. So all in all I am now thinking of stopping after 6 session of what I now know to be 275mg of Taxol which seems high to me on the weekly protocol...I would appreciate your thoughts and opinions.....
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candy-678, you absolutly can have pain, mine are stable but if I do too much, or too little, or sleep the wrong way, my back will hurt.
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