Bone Mets Thread
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Wendy - awesome!
Patty - I second and third the suggestion to try medical cannabis. It sometimes works and you so deserve a break. In the meantime, may you stay well hydrated and out of the hospital. Ginger tea?
>Z<
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Patty after diagnosis I wasn't sleeping I would get up in the morning more tired than I went to bed and in addition I lost 25 lbs. for a person who is 6'1" it was not a good look for me. Funny my whole life I was obsessed with loosing weight ,then it happened and I wanted it all back. MJ fixed that for me my appetite came back. When you take a little MJ it's amazing how your taste buds change eating an apple was a revelation. Now I take one capsul of RSO at night and I sleep very heavy and straight through for eight hours or so. No side effects it's all about the proper dosing for your size. Also getting the right strain for your needs. It's definitely not what it used to be.
Wendy
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Wendy so happy for you. You might get a lot of company to share the CBD. Good for you.
Patti fingers crossed you get through this real soon. All you could do is hug DSS and love them. It's tough, but with such sweet mom, i think it will make them more sensitive to others. Your hubby is great, doing the right things.D is having major issues with mouthsores, it could either be from the Xeloda or the Rads she had to the jaw, hope it gets better soon. The running to the bathroom is an issue also.
Beatrix, sounds great!
Lindalou thanks for the regards, happy to know Terre is busy busy.'
Babs you are living the life!
Hugs to all!
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Wendy - Congrats on stable!
Mommal - how are you and how is Dany?
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I love to come here and hear about good results.
Congratulations
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Ziz me too! Makes me hopeful!!!
Babs
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Hi,
I need an ear and maybe an opinion or two. I was officially notified of my Stage IV with bone mets in August (severe back pain led to MRI which led to surgery fusing T10-L1 and a PET and CT). My Onc. waited until my after surgery apt (mid Sept) to tell me, by then I knew by getting the MRI report and hearing it from my surgeon, who did a biopsy. At the Sept visit, he said we will take out my ovaries (done 10/3), start treating me with Anastrozole, and I needed to get clearance from the dentist to start meds to strengthen my bones. We would watch the tumor markers to monitor the disease. At my Oct visit I got the script for the Anastrozole and started it 10/12. During my Nov visit, he told me my tumor markers were up a little bit and he was disappointed but didn't want to over react. After all, I had only been taking the treatment 4 weeks. I will complete my dental work and have scans done before my next visit Dec 12 and will start the bone stuff then. So, I logged into my patient portal to check out my blood work, curious what the tumor markers looked like. In Sept, CA 27-29 was 321. In Nov it had risen to 406. There isn't any info on the TM for the Oct visit. Now, that seems like significant jump to me. Granted, I was only taking the Anastrozole the last 4 weeks. Because it took him 6 weeks to tell me I had cancer again, I'm not sure if that's concerning or not. He says its not a fast moving cancer but my PET in August was lit up like a Christmas tree. It was only 9 months from the end of my treatment for the original diagnosis to the time I first "hurt my back". It took a year from the first back pain to get to two crushed vertebrae and crippling nerve pain that brought on the surgery and second diagnosis.
If this is slow moving, it seems that it must have hit my bones relatively soon after the original treatment. At this point it's only in the bones but it is on my head, right shoulder, entire pelvis, left femur, right knee, entire spine, and both heels. Those are the brightest spots, there are a few speckles here and there. The only places that hurt are my knee, my shoulder, and my pelvis.
Well, that was a lot of words - I guess I needed to talk... I'm going to call for the TM for the October lab work but don't you think 321 to 406 is a substantial jump?
Still trying for brave...
Bonnie
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Hi, Bonnie. I'm so sorry you have reason to be here, but I'm glad you've found us. As far as your TMs... Yes, 321 to 406 is a significant jump, but not unusual given the fact that you were only on Anastrozole for 4 weeks. It will be interesting to see if your TMs have taken a dive (hopefully!) this month, or at least are headed in a downward direction. Hopefully, they will have, and you can feel more assured that the med you're on is working.
I suspect it took your onc 6 weeks to inform you that your bc had become metastatic because he was waiting for results of a biopsy done in conjunction with your surgery. Doing a pathology on bone takes considerably longer than soft tissue due to the fact that they have to degrade the bone, which literally takes weeks when done properly to preserve the information they're after. If the degrading process is rushed, the info' they're after can degrade with it. And yes, it seems like it would have been nice if you could have started Anastrozole immediately at that point, but perhaps your onc had a reason to hold up a few weeks. If it bothers you, I'd suggest asking him the reason for the delay.
I also have diffuse and extensive bone mets -- coming up on almost 3 years now. So don't let the fact that you have multiple areas concern you more than the fact that you have mets. No matter how many areas we have, if a drug proves to be effective, it will most of the time address them all. Having mets in a knee is a bit rare, and even more so in your heels. That might be something to question the next time you see your onc. I'm not a doc, but my first thought when reading that was to wonder if they're calling those areas mets when, in fact, it's arthritis or other degenerative disease in those specific places.
Now, all that said -- if the delays and other lack of communication bother you, then you may just be happier finding a different onc. You'll be seeing whoever you choose monthly from here on out, and if this one's communication or decisions about your treatment don't set well with you for any reason, I'd absolutely recommend shopping around until you find an onc you will feel good about seeing and will trust more with your care going forward. (((Hugs))) Deanna
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Bonnie - sending you healing vibes and comfort as you get through these diagnostics and treatment decisions. Personally, I don't put any stock in tumor markers. Over time (like years) you maybe able to tease out some meaning, but not over months. It's all about scans, but even scans get mis-interpreted. Deanna's point about the heel and knee mets is very interesting, push them about that. Are they really mets? And her comment about second opinions is critical. I like my doc. I will always get a second opinion at every treatment decisions. There is no cookbook for stage IV cancer.
In general, be careful about giving up on any protocol. We don't have that many. And certainly never make the decision based on tumor markers.
>Z<
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How do you get insurance to go along with second opinions? I feel like I'm way ahead if we can just get them to cover basic care.
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I've gotten second and third opinions and never has my insurance questioned it. I am sure it depends on the insurance, but it is in their interest to have you on the right treatments. The treatments are far more expensive than the doctor visit. Call them.
>Z<
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hi all,
I know several of you from other topics, and someone posted this link.
I use cannabis-CBD-in an edible oil and love it. It doesn't make me high, enhances pain meds, and helps me sleep. CA has had medical MJ available for awhile, and recreational MJ was passed earlier this month. I smoked pot in the 70s, and what's available now is very different. My pot shop allows 3 week to try something - a money back guarantee!
Chiming in on TMs...my onc said that unless there is a huge jump in numbers, he isn't concerned. Mine have doubled in the last 12 months due to soft tissue progression, and he and I are not concerned.
Much love to you all.
Patt
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patt. Love to hear success stories with the mj. Gonna ask my Mo his opinion at my appt Friday since our state just legalized it for some medical reasons. No idea how long until it would actually be available. Love the 3 week guarantee. But if it help the pain and vomiting I wouldn't mind the high giddy feeling too
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Where do you all get your CBD oil?
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Bonnie,
"In Sept, CA 27-29 was 321. In Nov it had risen to 406."
I'm not a doctor but I think you should let drugs working. It can take 1-3 months after starting treatment (ovariectomy, Anastrozol), so you have to recheck CA 27-29 after 3 month, in my opinion. But of course, to be sure, get second opinion as Zarovka said:)
Lately, my onc said that finally after 7 month, my treatment had optimal effect and there is stabilization. LOL
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Re. the recent discussion about MM... Brian Lawenda, MD, is a Harvard educated Integrative Oncologist I've followed on FB for sometime. Here's a short video interview he just published on MM I thought might interest some here.
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Thanks Deanna.....good video. Wish he lived near me!
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Patty, my MO doesn't give me his opinion on matters that are not legal federally, which pot is not. Don't be surprised if he demures.
I purchase CBD oil at a local pot shop.
Patti
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I probably should have added, my UCLA onc told me she doesn't RX it, but she has patients who use it. (MM has been legal in CA for awhile. Recreational use was just approved.) I had asked her about it after reading this article in CURE, which also has a lot of good info.
http://www.curetoday.com/publications/cure/2015/su...
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LindaE hi, chugging along. Much pain from many mouth sores. So it affects her eating, which affects her weight, which absolutely cannot go any lower. She wants to eat, but it's so painful. She is trying very hard, if it's from the Rads and not from the tx, (which Onco thinks it's from rads to the jaw area) we are told it should diminish sooner than later, but... meanwhile, it's kinda hellish, to be honest. Next wk is scan week, so maybe we'll know at least how the tx is going. Yep.
BonnieMen it is so frustrating when doctors don't communicate openly with the patients, which are people. Docs forget this detail. Deanna is right about bone mets, the way that treatment could work systemically. What about other TM's? The CA 15.3 I am told is more specific if a certain treatment is working. And the CEA which is general. Just another few things if you wanna check out. As Zar commented, in my daughter's case it's absolutely not proof that the number correlates, last year she had constant progression on scans, but the numbers did not show, so now, we just look at it, but wait for the scans and how she feels, and take it from there.
Deanna that's just terrific. I've read in these threads, it helps a lot of people, they take it sublingual. Thank you for the info. Would it be allright, when the conversation arises if I put it up on a different thread?
Lulubee knowing you know so much about herbs and stuff, i thought you would appreciate this video.
Patti cheering for you!
Your opinion: About this friend with metastatic prostate cancer that I was helping out. He is taking Hormonal treatment, was found to have with one iliac bone met that was biopsied, and excised. (some myocardium FDG avidity(I read)). My question is, when he asked when they would redo a Pet/Ct to see if there is anything going on in the bones, he is told he does not have to worry about it, because they took out the one met he had. They are aiming at Brachytherapy in 2 mos. I for one, am not so comfortable with that decision of not redoing a Pet/Ct at least for a few times,(like 3 mos apart) so they could really see if the bones are clear, is it not? Just to let it go till he has some kind of pain to the bones? They only did PSA(TM's for prostate), not even CEA (major center in NYC), with your experience in bone mets, does that make sense to you, not scanning? Dani always had multiple bone mets, in the and the best it ever got was stable for a little while and otherwise it was always on the move, so I can't think of her example, of how often she had scans. TIA for the input.
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Hello BonnieMen,
I am newly diagnosed as well with bone mets. My tumor markers were 222 when I was first diagnosed with blood work at the end of August. I went immediately for a second opinion in October to Dana Farber in Boston and my ONC there looked over all of the scans and treatment plan that my home ONC was already starting. My ONC in Boston told me and my husband that after the first few treatments, which I am on Ibrance and Flaslodex plus Xgeva for bone strengthening, not to be surprised if my tumor markers were to spike, which they did the next month. It went from 222 to 330. I'm not sure why this happens, and I'm not sure if you are on this treatment, but that is what has happened to me. I will see if they start coming down soon, my 3rd cycle of Ibrance next week and I had my three shots today. It is all very scary to me too, I'm just doing what they say, and always keep both of my Oncologist on board!!! Hope this helps a little.
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MomATT, thank you for thinking of me... but... I don't see the video. Did I miss it?
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Thanks Deanna. I am not in Nevada, but Dr. Lawanda does phone consultations. He's on my list of possible paths forward.
>Z<
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Lulubee the video that Deanna attached about MM.
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MomATT-- OH, okay! I'll watch it now! Thanks.
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Z, I may have just been lucky, but I've messaged Brian Lawanda with questions about things he's posted on FB related to cancer, and he's always responded. So you might try contacting him with a question or two to feel out if he's worth a long distance consultation, if you're ever at that point. Here's a link to his FB page. https://www.facebook.com/Integrative-Oncology-Esse...
Joe Veltmann is another savvy integrative practitioner (not a medical doc) I've talked to in the past, and he's in Santa Fe. I probably contacted him back when I was concerned about nutrition and recurrence prevention (which didn't happen!), so not sure how knowledgeable he is about mbc. And another integrative guy I like is Dr. Isaac Eliaz. Again, I'm not sure how much he knows about mbc, but I've gotten some very good info' from him in the past. He's very into meditation for healing, something I am also pursuing. https://www.facebook.com/ieliaz?fref=ts
Oh, and here's an organization my naturopathic doc, Sonja Fung, belongs to. https://oncanp.org/ I'm surprised it doesn't look like there are any members listed in NM, but quite a few in AZ.
MomATT, of course you may share those links. Thanks for asking.
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Deanna. Wow. Love all the info. Haven't checked the links yet but video was good.
Someone mentioned about mo not recommending it since against fed law but I hope that's not the case because it is strictly for a specific amount of med reasons only. Have to have mos approval to apply is my understanding.
I can'tremember if I already mentioned, but I am back in the hospital. Got here Thursday. Same issues. Uncontrollable vomiting , diahrea until dehydrated then crazy pain. So wide awake in the lonely hospital grr.
Anyway , hugs to all
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Patty,
so sorry you back to the hospital, hang in there!
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Patty, so sorry to hear you are back in the hospital! Hopefully some fluids will make you feel better soon! Hang in there! Vomiting and diarrhea really make you weak as you are well aware. Prayers for relief for you. Know that many here care and are here for you.
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Patty. So sorry you're back in the hospital. Hoping for a quick response and that you get out soon
Babs
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