Bone Mets Thread
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Latte, some years ago I had a bad car accident and crush fractured two vertibrae and this is where I fully expected the mets to be but they are mainly in my humerus which was never damaged........it was strong, perfect bone, but not any more. I don't think a damage or weakened bone as against a perfect bone makes any difference really, it just a case that the cancer cells beds in and multiplies where it will.
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I have a question, I saw my mo yesterday and she told me that my mets show up as a hotspot in my hip, not in the bone but in the bone marrow. I tried looking this up on google but it was very confusing. One article I read said that the prognosis is poor, then another I read said that the cancer can disappear with the chemo used to treat the intial cancer. Does anyone on here have any info on mets to the bone marrow?
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I've got mets in my bone marrow. My Onc doesn't seem any more concerned about that than any of the other mets. The biggest complication I have, most likely due to the marrow mets, is my WBC's stay well below normal and I am slightly anemic. I have problems with some chemos because of it, but we monitor it and use Neulasta as needed.
Currently I am on Xeloda and my blood counts are improving, so I'm guessing it must me nailing the marrow mets!
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Thanks chele, my wbc have all been normal since I began chemo in Dec 2012. And no anemia at all.
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Mom had mets to the bone marrow as well, which exacerbated her anemia. Her WBC was always very low but her RBC and H&H counts also started dropping. They treated her with Procrit (40,000 units per dose) for the RBC's, Neulasta for the WBC's, and occasionally a blood transfusion when her hemoglobin got below 6.4. When she switched to Abraxane, her counts got even lower and they had to start using Neupogen (a faster acting, yet shorter lasting version of Neulasta) in between her bi-weekly doses of chemo.
Eventually, it became too much for her, her bone marrow was pushed to the limit with all the Procrit and Neupogen shots and when her WBC's dropped to 300 (0.3), the doctors couldn't get the Neupogen to bump it back up.
The reason I mention this is to stress the importance of monitoring your blood counts and knowing when enough is enough... when to give your body a "chemo break." Mom pushed for every last drop of her chemo, even though it eventually ended up being what caused her to lose her life. Her doctors told her the risks, she made the decision she made, and that's something each and every person has to do on their own. Just be careful when your counts are consistently low.
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Mox did your Mom have surgery, lumpectomy, mastectomy? I read that some have poor prognosis with bone marrow mets and some have it disappear with chemo for the initial cancer site. I'm just wondering. It seems the more I learn about my cancer the more confused I get. I have been on abraxane since Feb. And my wbc have never got below below the 7's.
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Macyhen--I have mets in my mid-spine and in the marrow. Like you, I'm still confused about the "marrow" part. My doctors talk about the bone and the marrow as if they are one in the same. I have been on Faslodex/Zometa for almost 2 years and have stayed stable with some areas of improvement. (I feel so blessed and thankful that my treatment is working!) My RBC & WBC counts have stayed normal and I get them checked once a month. I will ask about the marrow at my next treatment appointment plus, do a little research on the web.
Let me know what you find out. It seems like so much information about cancer turns out to be "murky" and confusing doesn't it?
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Most of us with bone mets have some that is also in the bone marrow. Most of mine affect the bone cortex,on MRI scans I have some that are in my bone marrow also. My oncologist told me that it doesn't change the treatment for bone mets. We all need to be aware of our counts - so far mine is ok. I have noticed my platelet count has dropped but is holding.
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Yes Areil it does!! The more I read the more confused I get. When my mo says you just have a small hotspot in your bone, it makes me feel like I possibly have a chance at fighting this beast. But then she says it's not in the bone it is in the bone marrow it scares me because bone marrow moves throughout the body, doesn't it? I guess I will have to wait until my next PET scan scan in June to see how things are going. I pray for no progression and a shrinking of my "Hotspot".
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pray no progession but don't over think it if that is at all possible...I have it also in the bone and the marrow I assume, went to the LBBC conference and asked that question, wish I remembered what they said....let me see if I can find it....
http://www.lbbc.org/Event-Archive/2013-04-13-Bone-Mets/(language)/eng-US
there it is....if you can't get it, it is on the living beyond breast cancer website, under the metastic conference..
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Thanks for the link Blondiex.........very interesting.
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Latte,
I started out with bone mets. I have had several injuries to my bones. Shoulder, humerous, femur, hip. The areas that I have had injury to has mets too. My shoulder, hip, and femur. Though I now have bone mets throughout my body. Along with organs. I am on Zometa as well. I have had rads to certain parts that have cause me lots of pain. I had hurt my back too and I recall my Dr. asking me if I had an accident or something cause they would really like to check out that site. I do have cancer in the spine. You name it it is probably there. I wish you the best in your journey. "Take time to enjoy the simpliest things in life"
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Thanks Elisabeth!
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Hi ladies. I just found this board and am so glad that I did. I have had bone mets since 2001. The mets were discovered through a rise in tumor markers. I've never experienced any pain or discomfort. I've asked my onc where the mets are and he said that my situation is hard to describle. He said that I'm "spotty" with only one area that there is an actual small tumor (pelvis). The rest is small spotting in other areas of the body including spine. I'm wondering how many other people are in a similar situation. Right now I'm on TDM1 along with Afinitor/Aromisin and Xeloda/Tykerb. My tumor markers have been close to 300, but have remained stable for the past 18 months. The most difficult part of the treatment has been the big D from the Afinitor, but that is preferable to what I had on my previous treatment Perjeta. I pleaded with my onc to take me off of Perjeta as that was the worst. So now I'm on the TDM1 which has been much easier. My onc is very big into complementary treatments, so I just started with Glutathione infusions at every treatment. So far I'm really liking how it makes me feel. I have very high ER/PR which was biopsied again in 2010 since my onc wanted to be sure that the status didn't change. I've not yet had Faslodex as my onc said since I am stable he doesn't want to use up all of my options. That makes sense, but tumor markers close with 300, with or without symptoms scare me somewhat. I wonder how much the TM's really mean. I'm interested to hear how others are handling this life. I work full time and have been able to continue a normal life. Blessings and prayers for all.
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Pearlady,
12 years with bone mets! We are going to gather around you like a Maypole to hear your story. It looks like hormonal therapies and you got on very well.
I'm a stay-at-home Mom who is in awe of you. So, no real advice, as I'm a total newbie at this. How have you coped so well over the years?
Thanks for posting,
Jennifer
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Pearlady, It's great to learn of someone 12 years out from bone mets dx! Glad you have joined us here.
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Hi pearllady, I want to follow in your footsteps!! I have had bone mets since july 2012 and like you have no symptoms and work full time and pretty much carry on like normal in denial that it will ever get me lol. I would be very interested to know what your treatments have been for the past 12 years, especially if they are complimentary. My onc is strictly standard of care but I am always trying alternatives and I think he gets a bit irritated at times. I am starting to think her2+ is an advantage. I'm seeing a lot of people living a long time with the her2 drugs!
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Pearllady I just looked at your treatments and see you had femara for 5 years. That is great! Also it looks like you have not had herceptin. I thought everyone her2+ got that drug? I am on letrozole and xgeva. Does insurance pay for glutathione injections? Not sure what to say about the TMs up to 300. What has the normal range for you been for the last 12 years?
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welcome pealady
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Pearlady, congrats on 12 years!! I'm allergic to pears but am pear-shaped. Maybe that will help me?
I am a SAHM (stay-at-home mom) but I was not asymptomatic and side effects for me were never fun, even after remission. Now that I'm on low-dose Tamox I could see working again. I was so glad to be rid of Femara, which I took for 4.5 years. My onc took pity on me, I think. OTOH, there's the uncertainty of how long Tamox will work and not wanting to have it fail on me. Hard to win in this game but thankful I'm still in it. All the best to you!0 -
Heidihill. The name is actually Pearl Lady as I am known for always wearing pearls. I'm not much for pears either. Interesting that you are glad to be rid of Femara. I guess we're all so different. Femara was so good for me. I felt totally normal and could be in denial about the cancer. You're right, we have to do whatever we can to stay in it. I think the best thing about our situation is that we are ER/PR+. I have read that sometimes ER/PR+ with bone mets can live many, many years with the mets confined to bone only. I hope that's true for all of us.
HLB I have been on herceptin. I guess I should redo my profile later. I was on herceptin when my mets were discovered in 2001 until my markers were normal in 2002. He then took me off herceptin and I was on Arimidex only. After a year without herceptin and a rise in TMs, I was back on Herceptin in 2003 along with Femara. I was on herceptin until April 2013 when I switched to TDM1. I was on perjeta and herceptin for six months and I pleaded with my onc to take me off of the perjeta. The big D side effect was awful. It was so difficult to manage. I'm now on TDM1 along with Afinitor. Not an easy drug either, but much better than perjeta, so I guess it's all relative.
Don't know if anyone is aware of the Metformin trials. There are currently trials with the diabetes drug that holds great promise for breast cancer. My onc actually had me on Metformin for six months but I had to go off due to the big D being terrible. But that was with other drugs that also caused the problem. We are talking about the possibility of trying it again, without the afinitor. There is a link for the trial which I will try to get and post.
My onc tells me not to worry too much about the TMs in that sometimes with bone mets they can go higher than with mets to organs. Not sure why that would be. He says the important thing is I have no pain and am stable. I was hoping that the TDM1 would decrease the markers, but he says he's happy with stable over the past year.
Unfortunately HLB insurance does not pay for Glutathione injections. But my onc is giving it to me for a manageable price. I've spoken with other women in my onc's practice who claim that it helps them to tolerate the treatments much better. So I feel it is a small price to pay. Dr. Oz is a big proponent of Glutathione. I'll just have to shop a bit less. It's very easy also as it can be infused right before the TDM1 at the same time. My onc also does Vitamin C infusions which are suppossed to be very good for the cancer. I can't get that however since believe it or not, I've gotten by all these years without a port and would need one for Vitamin C. I'm not yet ready for that. Somehow having a port would be a daily reminder of the cancer.
Have a great weekend everyone and here's to many years of dealing with this.
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Thanks Pearl. I also feel normal on letrozole so I just hope it works a long time like it did for you! I do know about the metformin but my meany onc won't prescibe because the results are not in yet. Everything is aby studies with him and I mean EVERYTHING. Its frustrating. Not that I don't see the value in studies but I don't depend 100 percent on only studies. There are too many other things out there with good possibilities. I had a consult with a holistic dr who has been a peds onc for many years and became a holistic dr about 5 years ago. His main job is still peds onc and he is a colleague of my onc, so there are limits to what he can do, but he does know who to refer me to if I would want something like those injections. I'm gradually getting together a list of things to discuss for another appt with him because I really like him and he helped me a lot. Have a great weekend!
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I started tamoxifen in June of 2012 and it now seems that the Tamoxifen is no longer holding the mets at bay. Onc wants me to start Falsodex and Zometa. From what I have read there are less side effects with Xgeva. My onc is open to using Xgeva and he will check with my ins to see if I'm covered. So I am afraid of having to move on to different drugs hoping that the new combo works for a long time I had thought tamoxifen would work for me longer, I barely got a year out of it.
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I am new to this thread, although I have been posting on other discussion forums.
NYCchutzpah, I started on Xgeva and Faslodex three weeks ago and there are no side effects (so far). I hope it stays this way!
I had Cyberknife treatment for cervical mets and the pain has been relentless!! Currently taking steroids for pain. The RO and the MO said that my pain is due to the location of the mets. I have another 'area of activiity' on T-9, which is not as painful.
Have a good, pain-free weekend!!
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NYC I have been on xGEVA since July and I got really tired for one day the first 3 times, now I have no SEs. Its a very easy tx to take. Sorry you didn't get much time with tamox. I am on letrozole and I worry all the time how long it will work. I see people get 5 years and I also see people get less than a year. Its scary. I just ordered some DIM. I take a lot of supplements but DIM is something that a lot of people are using instead of tamox or an AI. Not going to stop the L, too scary, but maybe something like DIM will help these treatments to last longer. That is the goal I'm going for right now....find a way to get a long time from treatments! My life is normal and I dread having to do chemo or going on disability and stuff like that. The way things are now makes it easier to just stay in denial that I will get worse. I hope you get approved for the xgeva and I hope the F lasts a long long time!
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Hi everyone! Excuse me for being bc abbreviations illiterate, but what is DIM?
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sorry macy have no idea...
I did falsodex a while ago, didn't work long for me....am also on zometa, just started it again...
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My mom has the breast cancer in every bone in her body. Not beyond the bones, which I suppose is good news. She just finished 3 weeks of radiation. How long before the radiation helps with the pain? I've heard after radiation treatment stops, it gets worse before better. Has that been the case with anyone? The radiation was focused on her back I think. She can barely stand as it is and is constantly on the morphine patch and oxycodine and still In agony.
Also, maybe more worrisome is that she literally eats NOTHING and has lost a lot of weight. All skin and bones. She is on a steroid for appetite increase with zero effect. She won't even try soup...This has been going on for over a month.0 -
DIM is a natural product derived from cruciferous veggies. Dindolymethante or something like that. Sorry, spend a lot of time on the complimentary/alternative forums.
Sorry about your mom. It sounds awful. I've never had rads but I know that it continues to work for months after tx is finished. Hope the pain lessens soon.0 -
So many questions and we answer them to the best of our knowledge. I have had mets for 4 years now. I have done several chemo drugs. Which have got to the point that they do not work anymore and have to move on to another one. I am TN so I cannot do hormone therapy of any kind. Chemo is it. I have been doing metformin for 2 years now. My naturopath put me on it. I have mets throughout my bones, liver, kidney and nodes. Radiation has helped me with my pain. It will cause pain because it is getting deeper into the bone. When it hurts that means it is working. Mine took a few weeks. I lived on Oxycotin, oxycodone, and morphine if need be. My bone mets got really bad in my left femur and left hip. It was eating away my bone marrow. I had surgery and they burrowed out the bone marrow and put a rod in from my hip to my knee. They also found out that my hip was broken. Which they did not see on the xray and did not understand the pain I was going through. Walked around for 4 months on pain meds beause os this. It has taken me a year to completely heal and walk normal again. I have radiation on my pelvis, hips, femur, shoulder, spine along with my breast at the beginning. I do not do soy brands at all cause of the hormones. I do take supplements, avoid sugar it is very toxic. Before chemo I am on a high protein diet no carbs, or sugars 2 days before and the day after cause this way the drug is able to fight the cancer cells. With the sugars, and carbs that is what they are constantly attacking. The chemo I am on is being effective. My oncologist was ready to change my chemo again cause my tumor markers tripled they have reached 1660 but the PET scan showed a slight improvement. She just could not explain it. I am just glad finally something is working for me. I have done 3 other chemos before this and none of them worked. Have a awesome memorial weekend.
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