Bone Mets Thread
Comments
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Kaption, I don't see him until next Tuesday. So of course the girls working in the nuclear medicine area won't give me anything but wow! I'm really freaked out now seeing that. But it helps to know I'm not alone although at this moment I absolutely hate that anybody has to see a scan like that. Thanks for answering Kaption. I do appreciate it. Will be thinking of you tomorrow.
Misty, you had a looong day! Hoping that trial is a great one and you have wonderful response to it! Will be thinking of you
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Hi Everyone, Hope everyone had a Merry Christmas, Happy New Year, Happy Holiday season. I just wanted to get some opinions. Hmmmm, so I noticed when I move my arm above my head, like to stretch or child pose with arms extended, my shoulder hurts deep inside. It's been like this for 3 weeks. It doesn't hurt consistently, I have full range of motion (for the most part-it hurts sometimes when I take a shirt off over my head), can sleep just fine and can lift things without it hurting. It's just when I move it in that one position. I'm a little worried as it's that deep burning pain. Not a sudden pain. I have scans on 2/21 but am thinking of moving them up. What do u think? I have bone Mets, triple positive, H&P, tamoxifen and zometa. TIA. Dana
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Dana I'm not experienced enough at this point to even imagine what it might be but I hope you get an answer soon and that it's nothing
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Gracie - not a good idea to try and interpret those images yourself! I hope you get results soon, and good ones of course! I had a bone scan last Friday and as I was lying down looked at the screen. I had the same reaction as you looking at my mets then decided to close my eyes.
Misty - you must be relieved to have started tx! Glad SEs are gentle on you. What a long day!
Kaption - good luck tomorrow.
Dana - As you know, any new pain that lasts more than 2 to 3 weeks should be investigated. When were your last scans? If you have the possibility of moving them up and your last scans were more than 3 months ago, then why not.
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NicNak - congratulations on the NED. I have all kinds of pain where the tumors were and in places they might be but aren't. But I am stable. Yay.
Gracie - hang in there. It's almost too bad you got a look at the scan as the mental games are insupportable. Healing bone mets and new mets are indistinguishable to the layman. Let the radiologist tell you what it means. Sending you peace and hugs. The waiting is just terrible for me.
Misty - 11 hours is a long day. You are obviously in good shape to get through all that. Glad it was easy. Let us know how you feel the next few days and beyond. When is the next infusion?
Dana - I don't know when you got your last scan, but if it is more than 3 months ago and you are worried, then get a scan. Tamoxifen and hormone suppression generally causes all manner of joint pain and is the likely cause; however, it is useful to know that for sure. I think we know when something is wrong and it's always good to catch changes early. In the meantime consider getting your tumor markers tested if they have been any sort of help in the past.
>Z<
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Thanks ladies. I wish I hadn't seen it but it was right there on the screen in the room. Won't look again! I sincerely hope those healing mets light up too
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Gracie,
I, too, light up like a Christmas tree. My MO told me that as the bone mets heal, they'll light up even more and look worse. After awhile, the bone scan is not very useful.
I was equally fascinated and reeling when I saw my initial scans. My torso skeleton looked like Swiss cheese. Fascinating. Then I realized it's MY BODY and wondered how the hell am I staying upright!? When I saw the RO for the first time, he said, well, you're kind of a mess in there, aren't you. I was not offended....thought it was kinda funny. Really. I sort of stroll the dark humor lane, as some of you have noticed.
Last story: I had an emergency appendectomy 2 years ago, and they did a CT before surgery. My surgeon came in and said the RA tech freaked out when he saw my hip and pelvis bones and wanted to be sure I knew I had a bigger problem than appendicitis. We chuckled...when I said, indeed, I do!
I've had 6 days in a row of feeling pretty fantastic. Almost like before I was diagnosed Stage IV. I suspect it's because I feel like I finally got heard by the hospice medical director about my desire to receive death with dignity meds in the near future. After he left last Friday, I felt free, relieved. As many of you know it takes a lot of energy to carry around "not being heard". Next step is to talk to the senior doc at my clinic who will be the attending for this, and write the script. I don't think my own MO is ready...I don't think he has his head wrapped around "do no harm" could include helping a patient die, if that is their wish. As Lita said recently, for some of us, we know when we get to hospice that we are already actively dying. The meds just speed it up. And lessen the suffering of the patient and their loved ones.
You are some of my loved ones, and I am grateful you are here.
Love,
Patti
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Thanks Patti for your reply. Hopefully it looked that way because they are healing! Really freaking out about it tonight and don't have any idea how I'm going to sleep.
I'm so glad you are feeling better. I hope that lasts for a good long time!
Blessings to you!
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Patti - The mental burden of the disease will take away the time we do have if we let it. I am glad you were heard and that you are in control and at ease with how things are going.
Gracie - The mental burden ... wait I just said that. I am not great at dealing with scans myself but the truth is that bone mets do become more visible as they heal. Mine were not visible in CT/bone scans until they had healed. Beyond that, I suggest prayer. We are not built to handle this without help. It is right there if you ask for it.
>Z<
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Thanks, Z. I appreciate the support from everybody. Yes, prayer...sometimes I get so involved in whatever is going on that I forget that. Will try that if I can calm my mind down a bit. I did take some Lorazapam. Hopefully that will help in a bit. I'm glad you are all telling me about the bone mets becoming more visible. That helps.
Going to spend some time in prayer. Thank you so much!
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Gracie we had a similar diagnosis where are your bone mets and how did you find them if you don't mind me asking? I am a 10week newbie
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hey girls as I am an Aussie we don't have all the drugs you girls have so I am on femera I missed out on a trial of ibrance and it's $2000 per month to buy it. Do you think femera is good enough? Can you get to ned with extensive bone mets? Thanks Judy
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just checking in after my hyst/ooph surgery. Everything went well. Pretty sore and can't sleep :0 very thankful for this forum to go to.
Apg- thanks for updating us on your trial, sounds like a long day. How are you feel now? Was just curious if there was a delayed response for SE's
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Hi Everyone, thanks for your advice the other day. I have already been checked out at MD Anderson and I'm all good, no cancer in the shoulder. My MO let me know last night. XO Dana
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Delvzy, I had five spots on my spine, one on the left side back of skull, myriad on ribs both sides, one on left hip, left femur, right femur and soft tissue on right chest wall. Extensive. They put me on Femera, and I just started XGeva shot in December, which I waited for because I had a lot of dental work that had to be done. I wish the best for you
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oh forgot, they found mine through routine blood work up which showed my tumor markers were up, so they did further testing and there they were
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casino, glad things went well. I had my hyst in 2007. Just take it easy for a bit.
Dana, that sounds like good news!
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Casun, I hope you are doing well! I was a bit sore from mine but not bad. I did take the meds they gave me though because my back was aching also and I just wanted to rest well.
I am doing ok still with se. I am having a little bit of a sore throat and my mouth is a little tender. I notice that some foods that are a tiny bit spicy set my mouth on fire! I have to be careful what I eat. I don't have sores though. Hopefully that doesn't appear. I am using biotene toothpaste and rinse. Is there any other tips anyone knows for this. I didn't have that with my chemo.
Hope everyone has a great day!
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txmom so glad to read that! Great news!!!
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Huh. Evidently, this thread somehow fell out of my Favorites collection a couple of weeks ago. Weird- I've been on this thread for almost seven years so I'm not sure how that happened.
(My inner 12 year old: WAS IT SOMETHING I SAID?)
LOL
Anyway, me and all my leopard print bones are back. Hey there, everyone!
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Nik Nak congratulations to you that's great happy dance time.😊
Gracie I haven't seen my scan sometimes I wonder if what we imagine is maybe worse than the real thing?
Patty I'm very happy you are having some quality happy time lets hope for many more🤓
Just got my tentative scan results I'm still stable with more shrinkage to breast tumour....hate to say it but yeah MJ.
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I have a different kind of request to the ladies on this forum. If anyone lives in SF Bay Area, can you please recommend an oncologist you trust, caring and thinks out of the box ? I would like to consult with him / her.
Not looking for someone in Stanford (I am losing confidence with the onc there and not sure if I can ask for a different onc at the same place) or UCSF (we already go there for second opinion).
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Welcome back Lulubee!
Wendy - Excellent news!
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Let...I have Kaiser, so if you're not in their network you can't switch to someone else.
Depending on what group you're with (e.g. Sutter Health, Palo Alto Medical Foundation, etc,) your choices may be limited. This may take some digging.
I wonder if you contacted the American Cancer Society in the Bay Area, they might have a recommendation or two.
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Delvzy - letrozol is good stuff. Like any drug, it may or may not get you to NED, but stable and ned are pretty much the same in terms of outcome. So look for stable.
Ibrance is a great second line treatment. If I had to do it over, I might have held off on taking ibrance to keep it in my pocket as a second line treatment.
Dana - Awesome.
Wendy - That is an AWESOME scan. I am so glad for you. The continued shrinkage of the breast tumor at this point is hard to explain without Cannabis.
>Z<
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Z I was never sure all along if it was the cannibus or something else but since I know now I'm getting the placebo and my onc is somewhat surprised by my good results I can't help but believe it must be.
Lulube that's happened to me a couple times as well so glad your back. 😊
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LMwL, I'm with the Palo Alto Med Fnd and I love my onc, and med team. I'm not so sure about outside the box, and I don't mean that as a negative. I am not a typical patient, I consider my med team my partners, and sometimes I think that's a pain in my onc's keister. And I feel well cared for.
If you want his name, pm me and I'll give you that and his phone no.
Good luck. I'm all for having confidence in the med staff......it makes life easier.
Lulubee, good to see you. Yes, we like you. We really, really like you!
Love,
Patti
On day 7 of feeling pretty great! A little more short of breath than the previous 6 days, and I'll still take it. I love not being nauseated, headachy, sleeping, sneezy, dopey or any of the other 7 dwarfs
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Lita,
American Cancer Society may be a good idea. I will call them up. I am not with Kaiser, so thats not an option.
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Wendy,
Congratulations on wonderful scan results.
Is Cannabis oil available in the US, from Amazon maybe ?
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LMWL, cannabis shops are all over the Bay Area. At the moment you would need a medical MJ card to purchase. Your wife can get a medical consult on line for $30 I think, via Skype, to get the card that lets her purchase, or you can get one as a caregiver. I don't know how soon the recreational sales will kick in, and how that'll be handled.
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