Bone Mets Thread
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Linda, I just now read your exciting news!! I'm so happy to hear this. Staying on the same treatment for now is great! Esp with us not being able to get Ibrance at this time. 2 years! We want more, way more, but 2 years is great!
Imagine, I don't remember seeing your name here before, so welcome. Several of us, me included have hears of supposed mets that we have that have never been mentioned before. It seems a common complaint. I find it a bit odd that he doesn't refer you to a RO for pain management. It's worked very well for a number of us. I just had my entire rib radiated for pain, even though my tumor markers are low & my mets are stable.
3-16, glad to hear your pain is easing. It still amazes me that a bit of radiation can do that. I'm patiently waiting for my pain to ease, I'm sure I just need a few more days.
Hope everyone else is ok. My friend with colon cancer isn't doing well, she is getting weaker each day & the steriods have deteriorated her leg muscles so badly that she can't climb two stairs to get into her house. I'm so sad for her, and for me. I fear I've seen her for the last time. :-( Just Dee, no cheers....
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imagineme,
Welcome. Radiation is not only for pain relief for a bone met but can also render it necrotic. I had a bone met, with no pain, but had rads and it has been completely inactive for years. I wonder why more mo's don't do this? Since I'm not a doctor, I'm assuming there must be a legitimate reason, but it sure was effective for me. Take care
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Wow..I am so far behind! I'm in Rotorua at a conference. It's a highly geothermal area and smells vaugely of rotten eggs, but it's pretty and warmer than at home. Great to get to see lots of old friends and make new ones.
Lindalou - sounds fantastic! Hope your trip is great - yes, I can tell you're excited.
Amy - the first thought that popped into my head was the analogy to having to have a signed/notarised statement that my cats are not pit bulls for New Zealand immigration. Equal insanity to have to sign for your own report.
LindaE - sounds darn good to me!
3-16 - glad you're getting relief!
Welcome Imagine. No advice to offer; I had rads pretty much immediately.
Valerie- I'd at least ask the MO about a scan. But I'm sure others will have better info than I.
Christina - so sorry you're having such a hard time.
Hello to 50s, Myra, Annie, Dee, Caryn, kJones, txmom, hydranne! And to everyone I'm missing.
Has anyone heard from Dune lately?
Sending hugs to all,
Terre
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Amy Q, for what it's worth, I have to sign for mine too ( and social security # ) unless they give it to me a the appt. I asked about it and the med tech said it is all part of HIPAA and they don't want to accidentally give someone else's report to you or vice versa. Frustrating I know.
Imagine, If you are concerned about not having an MRI, you can call his office and ask for his rationale and have him call you back, or if you see the pain specialist, ask him or her to contact your MO for the same reason. You should get your answer. good luck.
Dee, I know how hard it is to see a dear friend suffer, and it can evoke all sorts of feelings in us as well. Know that you are making a difference for her. She is lucky to have you.
Terre, have a good conference. I think you should have a cat conference.
Valerie, When you see your MO, ask for clarification then. I've had good bone density results and but mets everywhere. Crazy. Glad that you didn't have any SE's with Xgeva.
It has been 6 months since I've seen my son and when I saw him waking toward me at the airport terminal I just sobbed. Lots of emotions flooding. He hugged me for a long time. Leaving Chicago soon and heading home. He and his girl friend will be home with us until Saturday now. It is wonderful. We are having alone time Friday for lunch. Can't wait. This is the best medicine for mets ever! You all understand.
Linda
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Terre,
I've been to Rotorua! We toured a Maori village there with lots of hot springs and a good geyser and ate hangi pie. We also soaked our feet in a nice hot spring that was in a park in the middle of town. Yes, the sulfur smell was in the air but not too awful.
Hope all is well with everyone else
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Oh Lindalou, ENJOY, ENJOY, ENJOY! Your post brought tears to my eyes. No matter how old your kids are, they are always YOUR baby and then they have babies and on and on. The Circle of Life can be a very beautiful thing with a few dings along the way.
Terre, I have not heard from Dune or patty. Hope all is well.
Great day to all, was feeling a bit under the weather yesterday. Is anyone out there anemic? What do you feel like?
Hugs, Myra
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Good morning all,
Imagine - Welcome to this thread. I can relate to having mets not being mentioned. Your Onc is wise to send you to a pain specialist for overall pain relief. That does not rule out futur rads. Is a Radio-Onc part of your medical team at this point?
Valerie - a CT & bone scan would be very reasonable after 3 months. Congrats on your bones although I have no answer. I'm switching to Xgeva next week.
Dee - I'm really sorry about your friend Susan. I lost a few loved ones to this disease - it's hard. The rads benefit will kick in soon.
Lindalou - That certainly is the best medicine! Enjoy every minute.
Myra - Can't help you there. I have too much iron in my blood - wish I could send you some LOL. I'm also concerned about Patty and Dune. Praying they are doing well.
Terre - have you started packing?
Good day to all
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Myra, I have been anemic. It made me exhausted and my body ached, especially my feet. Lindalou, so glad you get to see your son. Best medicine ever. Dee so sorry about your friend. I know it's really hard. Hi to everyone else. Hope everyone has a good day. XO
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Welcome, rushjackson, sorry you had to join the club, but it's a wonderful place for information and support. Educate yourself on the disease process of MBC and bone mets. MBCN.org and METAvivor.org and of course breastcancer.org are great resources.
Regarding radiation to bone mets: there is a limit to the amount of radiation you can receive in a life time. Also, having had radiation can rule out some medications that you may need for other reasons in the future. I just agreed to rads for pain and fracture prevention after months of being offered the rads option. This was done because I don't tolerate opioids well. However, everyone is different and bone mets are crazy. I have so many it's hard to distinguish which are responding to treatment, which ones are old, etc. I've looked at my scans with my onc and radiologists and I believe they are genius! Don't know how they read these scans, X-rays, etc
Flu shots. As an NP, I always get it cause I'm around sick people all the time. TRICK: before you are stuck let your arm go completely limp. You won't feel the shot and you will have less soreness in the days following.
Yesterday my blood work was terrible. All meds on hold. Sooooooo - bump in the road until my Platelets, HgB, and calcium come up. Ice cream at every meal to get the calcium up! (I take supplement but dietary intake of calcium is easier absorbed).
Sending light, peace, and serenity to all.
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Myra,
I was anemic when I was first diagnosed with mbc last spring. My hemoglobin was down to 7. Like txmom, I was exhausted. How exhausted? I would get up in the morning, take a shower, then have to lie down for 5 minutes to get my energy back. I also had very little appetite. I am sure the symptoms not as bad if the anemia is lesssevere.
Lynne
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Linda stability what great news! and from your post seems the MO was so informative with you.- nice.
Imagineme My MO and RO are always egar to use rads especially if I need pain pills to manage pain and to prevent fracture. If it has you wondering that might mean time for second opinion or just ask for a radiation oncologist to look at it. Good luck and I hope you have a good pain plan soon.
Sparkirn I am always looking for reasons to up my ice cream intake. I hope your labs stablize soon.
Valarie, It is a mystery to me how frequently scans are needed. I have had 4 pet scans since dx. not yet a year ago. Seems excessive as I think about it. I love them when they are reassuring. Recent scan showed progression which I know will help me fight. this disease but still upsetting. I do think, I am scanned so frequently because my tummor markers are meaningless. Good luck finding peace with it.
Lindalou So happy for you to have your son with you . Enjoy the heck out of it. I wonder if you have any special family activities to enjoy. My daughter usually asks for some of her favorite home made. meals (steak tips and gravy or shepherd' s pie), and listening to our favorite radio show "live wire" from Portland public radio. Smiling for you.
I wishing good health and low pain for all.
Mary
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Linda, your ortho doc sounds like a real gem! It makes me wonder if we should all have one for a second set of eyes on scans or MRIs that involve bone. I'm sure you're very relieved to get such a thorough explanation and great report! I'm very happy for you!
Welcome, Rushjackson! I'm so sorry about your recent dx, but glad you've found us. As others have said, this group is a lifeline, especially in the beginning, when it's all so new and overwhelming. And, as they've also said, it does get easier, especially once you're on a tx plan that's working. One question... I'm curious why your onc is putting you on Aromasin (with Ibrance), rather than Femara, the drug used in the Ibrance studies. Not a criticism in any way -- just curiosity re. his or her rationale for doing this, as I suspect there is one.
Cristina, I wish I could do something to help you. It does sound like your DH is going through quite a lot too, trying to build a new real estate biz and worrying about you. He must be quite overwhelmed as well. I'm glad your sister will be closer. And I second all the suggestions that you need to get away as much as possible. Maybe when your sister is settled in, you can visit her with the kids or leave the kids with her while you or you and your hubby get away for a weekend. I know there are all sorts of retreats around the country for women going through bc, including this one in Park City, which I've heard is really good. http://imagerebornfoundation.org/
Imagineme, not sure if you've been here before, but if not, welcome! I'm sorry about the hip, but think I agree with your onc that meds should be your first line of defense, and save the rads for more serious pain, should it become needed in the future. What many of us have found is that several months on a tx that's really working will take care of the pain and in some cases the pain meds may be only needed temporarily, until the other meds really kick in.
Amy, as frustrating as your experience was trying to get your MRI results, I guess I can see the flip side to it too -- like what if someone you didn't want to have the results got them released w/just a phone request? I know that's probably far fetched in your situation, but it may not be for some families -- nosey or controlling rels wanting more info' than someone wants them to have, etc. So as frustrating as it is, I guess I understand not simply releasing records based on a phone request. But I totally get your frustration as well, and I would have been just as upset.
Valerie, that's very encouraging news on the improved bone density! I'm hoping for the same when I can finally start Xgeva.
3-16, great news on the pain improvement from rads!
And Linda, I can imagine how thrilled you are to have your son home for a nice, long visit! How far away does he live? I'll be thinking of you this week!
I was @ UCLA again yesterday for a follow up on the dental stuff. Kind of silly to drive 3 hrs. each way for what amounted to 5 mins. of looking in my mouth and telling me to come back in December, but that's the way it went. But the real insight this time was parking @ the main medical center plaza, which is a good 3 long, uphill city blocks from the dental school, and getting so incredibly out of breath during that uphill climb that I literally had to stop and catch my breath a couple of times. Not a fun revelation. I know Ibrance is partly to blame, but the experience has motivated me to get out and walk to rebuild the stamina I've clearly lost since my re-dx. Thankfully, it's cooler here this week, so no excuses.
Hugs to everyone, especially those not mentioned by name due to length! Deanna
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Many here have donated . Thank you !........Wandering around and cheerleading again
Donate today, make a difference directly in all our lives. By supporting BCO, we support each other. Thanks and Hugs
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Can Someone hep me?
I was diagnosed today with Stage 4 bone cancer. I do not see my oncologist tomorrow but I do know that I am not positive for estrogen and progesterone the Her 2 is not back yet. I am 18 years out of Breast Cancer. I had sciatic and they found a lytic lesion in my illiim that I had a bone biopsy done. It took almost 3 weeks for the results. I am going to go to Dana Farber in Boston for a second opinion on treatment. The contrast cat scan showed all other organs ok. I have been having pain in my ribs and leg and but not where the lesion was. Cat scan did not show anything in hips area and X-ray did not show anything in femur.
What treatment do you think I will have to do? I am so upset, can someone hep me?
Thank you
Carol
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loves, I wish I had some knowledge about this. I do not, because I'm fairly new as well, diagnosed september10. I can assure you that someone will be along soon with a ton of wisdom, hang in there, you will be feeling better as soon as your treatment starts. I already feel more like my old self. What you are feeling is normal. We are all scared out of our minds in the beginning. It truly will get better. You have come to the right place for support and knowledge. We all "get it", and are going through stage IV together. Many women are working and leading fairly normal lives. There is hope,I promise! Lots of warm hugs to you Loves Maltese. We are here for you. Check out the dark clouds thread, a lot of hopeful info there! Love chelle
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Welcome Carol. Sorry for the reason you're here but glad you found us. I have one suggestion - fill out your dx as much as you can as it does help other who have similar status (ER+ or -, etc) quickly see what's what. You're going through one of the roughest parts right now - the shock disbelief anger, etc. It does get better with time, especially once you get a treatment plan. I don't know what they're using these days for hormone negative bc, but I'm sure others will chime in. You'll fine lots of caring, warm hugs, and good advice here.
Dee - so sorry about your friend. Sending hugs.
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Carol - I'm sorry for the reasons that bring you here, but welcome! You will find a lot of knowledge, info and support on these boards. As Chelle said it will get better once you have a tx plan in place. Unfortunately, it's impossible to speculate on your tx until the pathology is completed. Excellent news on no organ involvement and I congratulate you on getting a second opinion. Do you know what your original pathology was 18 years ago? The waiting is so very difficult. Praying you get answers quickly. Keep us updated. Sending lots of hugs.
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Carol, I'm so sorry about your re-dx. I can only imagine what a shock it must be after 18 years.
Yes, bone biopsies do take a lot of time to get results because, as it was explained to me, they have to degrade the bone very slowly, so as not to lose the DNA and genetic information they need.
As far as what treatment will be recommended for you, it's impossible to guess based on the info' you have so far, but if you are truly hormone negative, maybe an oral chemo, rather than an aromatese inhibitor. Dana Farber, as I'm sure you know, is ranked #4 in the nation for cancer care, so you should get a very thorough workup and the very best recommendations and care there. (((Hugs))), and so sorry you're going through this. Deanna
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Carol, I also was 16 years out from dx. I too started with an MRI for sciatica. The pain mgmt MD was a colleague of my DH. Imagine when he had to call my DH and tell him I had bone mets and we were off and running. Luckily my original and very well esteemed MO was still in practice and remembered me since we kind of worked together. Scans done, rad tx for pain and tx plan in place.
Good luck. I hope you have the same results I have had. It took a few tries but is still confined to my bones. 1 1/2 yrs and a beautiful grand daughter later, I am still here in my new normal. I pray for the same for you. Breathe and things will begin to fall into place. Please visit here as much as you need. We are a loving and caring and knowledgeable bunch.
Myra
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hi all, read your posts. Welcome newbies.
I think Amy got away w/family, I am jealous, sounded wonderful. I live in central Florida, not much fall colors, but weather has been great. & I am living to see snow birds coming down already.
I am curious, I took Zometta monthly for a yr, now get it every 3 months. My bone mets progressed after that. When asked about going back to it monthly was told won't make a difference.
Quadramet last Thursday, so far minor flare, otherwise feeling ok. See MO tomorrow will find out what is next.
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Not the news I was hoping for. MRI showed significant progression in areas the PET/CT didn't. So in addition to new mets on spine I have two very large spots on pelvis and hip (which explains pain for 10 months) and numerous pea-sized spots on my shoulder and right upper arm (which explains arm and shoulder pain for about 4 months). Plan is quit Femara and start on Faslodex this week. I'm bummed of course but happy there are lots of new treatments to fall back on. I am going to ask my oncologist to biopsy the large tumors on my pelvis as I have a hunch the hormone receptor status may have changed, which would explain why Femara stopped working.
On a side note, my DH picked up a refill of one of my drugs yesterday, brought it home and left it with my other meds. In my rush to get to an appointment on time, I grabbed a pill from the newly refilled bottle and went out the door. This morning I grabbed the same bottle and was about to take another when I noticed these were NOT my pills - they belonged to someone else. The pharmacy gave my husband someone else's meds and I took it. Fortunately it was a rather benign drug, Ambien, but it could have been so much worse. I was very sleepy all afternoon and now I understand why. When I returned to the pharmacy with someone else's drug and explained what happened, they were horrified and of course very apologetic. I may start another thread as a warning to others, but those of us who take meds on a regular basis do so rather casually and without double-checking...I will never do that again.
Hope everyone is doing well and those of us with progression get back to remission soon.
Amy
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Wow, Amy, that is a scary story about the pharmacy. I am glad that you didn't suffer any complications from the screw up. I am sorry to hear about your progression, but it is good that you and your onc already have a plan in place. Hopefully, the new meds will work for you.
LovesMaltese, Welcome to the bone mets thread. I am sorry that you have to be here. It is good news that your mets are confined your your bones. Bone mets can be painful, but treatment often provides relief from the pain. I cannot comment on what treatment you might have, but there are many treatments available today, and people are living many years with mbc. Dana Farber is an excellent place to go for a second opinion. Once you start treatment, things will begin to settle down. You will find great support from people on this thread.
Lynne
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Amy - I'm so sorry about your progression. Amazing how bone mets can be tricky as they were not picked up on PET/CT. I follow the Faslodex thread and a lot of ladies have very good success with it and of course, I wish you the same. Good luck with your biopsy as well. Scary thing at your pharmacy, one more thing to check!
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Amy--so sorry about progression. Hoping new treatment will get things going in the right direction and reduce your pain. Sending love
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Thank you for responding to my desperate post. I am not good at trying to figure out my profile but once I get my head screwed on right I will figure it out. I had ILC Stage 2A in 1997. There were 2 positive nodes- It was if I remember correctly a grade1 or 2 and I will have to look up the tumor size which was small. I remember the margins were clean. I was ER/PR pos. I did A/C and had radiation and did 5 years of tam and 5 years of femmara.
I had sciatic and mri of spine showed some weighted signals that suggested to get a bone scan, bone scan had abnormal uptake in both ribs and both prox femur and pubic bone. X-ray follow up to this, found a lytic lesion in the illiium. Contrast cat scan confirmed the lytic lesion but did not find anything else except maybe a bone island that was not determined. That led to bone biopsy which confirmed I now have cancer.
I am sad to report that I am triple negative. I am uploading my report in hopes that someone can comment. I go to Dana Farber tomorrow for a second opinion. My oncologist where I am now has me scheduled for a pet scan next. I have pain in my hip thigh and ribs that just started about a month ago. This whole ordeal has been on going since end of June. So where I said in my earlier post that it had not spread to any other organs. I just know that in September the contrast abdomen and pelvic CT scan did not show anything. I need a full pet scan now. I do not understand much so any help I would appreciate. Thank you.
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Deanna,
I have a daughter named Deanna.
Hugs..
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Well, the verdict is now in. The jerk I didn't like handled himself quite well, so I have decided to stick with him for a while longer. So, I have a second met on my ischium, and a new one on my 9th rib. The one on my femur doesn't appear to have changed much.
Tamoxifen has obviously failed, so has been stopped. (The question of course is did it ever work in the first place, since this is my first round of scans since diagnosis in Feb).
I am now on Arimidex, and will start on Bisphosphonate infusions monthly once I get clearance from my dentist, and have a port put in.
I am also being referred back to the Radiation Oncologist to have my hip zapped for pain relief. And a CT just to ensure nothing else has cropped up as well. Then it will be December, and time for a mammogram on my remaining boob, "Poor Old Lefty".
I feel like I'm back at square one, with everything starting up at once. This roller coaster ride feels more like a merry-go-round, I'm going round in circles getting nowhere. Let's just hope I don't fall off!
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Amy sorry about progression. Have u heard of Foundation One. I guess they will DNA testing on bone biopsy. I was planning on doing it, but since I did Quadramet I no longer can.
LoveMaltese, I c/o hip pain for 6 months before I could get Dr to order PET scan, when I did get it my RO called & said he needed to see me next day, if i didn't start radiation right away my hip would fracture from just walking around. That was over 2 years ago, my last Pet scan shows progression, but cancer still only in my bones. Stay positive & I hope everyone has RO on board, I am glad I do, mine is wonderful
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Suems, sorry about the progression. Hopefully they will find something that works better for you. Lovemaltes I don't have much advice but I do know no organ involvement is good. There is also a woman on the NED board, Texasrose, who is triple negative. Maybe you can message her. She can give you some advice and hope. XO
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Amy, so sorry to hear of progression. A new tx will kick the cancer to the curb! Deanna, how was the party? Dune, you ok out there? hoping you are feeling great and enjoying your tx break. Wendy, come back, I miss you! Carol, keep reading, these threads really help! All of the ladies I haven't mentioned, you are in my thoughts and prayers. Big bear hugs and wishes for a warm pain free restful night to all! Love Chell
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