Bone Mets Thread
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hey just a question ladies medical cannabis is only just been approved in some states of Australia but in Victoria where I live it's still not legal but soon will be. Is the Cabbabis for pain or to get rid of the bone mets? Forgive my ignorance 😜Just a photo of myself taken the other day at the beach to remind you winter ladies of summer holidays to come x
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Delvzy, I use cannabis for pain relief, nausea control and help with sleep when I need it. I use mostly tincture and edibles. Just read a recipe on how to make cannabis butter for my own uses. Going to try it soon.
I use strains that are higher in cbd rather than thc because I don't like the high feeling, and thc can stimulate estrogen receptors.
Hope you don't have to wait too long for your state to legalize it.
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Helllo to everyone! Again I have been absent for far too long. I fell into a funk after the passing of my wonderful Grandfather. He was such a wonderful man. He spent his entire career in the army. Fought in three wars, he was the last living man from the horse Calvary. He grew up in Waco Texas. Never owned a pair of shoes until he went to college. His high school principal paid for him to go to Baylor. He retired in 1970 as a full bird colonel. He is soooo missed!!!!
I have been gone so long, many of you don't even know me. I welcome you!! Sucks to be here, I know! But it is so important to have other people to talk to that "get it" we are here all day every day for anyone that needs an ear.
I also have extensive bone mets. Skull to femurs. I was dx in September of 2015. Since the day of treatment, I have had no progression. I am taking tamoxifen and medical marijuana. I,like wendy believe that the Mj is a major contributor to my success in slowing this stuff down. You need many canabanoids for it to work correctly. THC,CBD,CBC,THCA...... I definitely have had to get through the high. But you can build a tolerance and be able to function as you normally would. I'm very thankful to be in Colorado!!!!!
Ladies!!!!! My house is almost done!!!! My closing date is February 23!!!!! I can't wait!!!! They are staining the wood and tomorrow the granite will be in. So,so,excited!!! I will post pictures for sure!
I had a pet scan on the 5th of December. Results were great. No activity, just more shrinkage. I have major meltdowns on occasion. I have got to hand it to cancer though, I sure know how to live life to the fullest. It's too bad it took this dx to teach me. But better late than never. Sometimes I cry, saying how unfair it all is. I wanted to live to be 100. My DH says "it's better to have four quarters,than a hundred pennies. Makes sense.....
I will post House pictures soon. But for now, I'm posting my beautiful new grandson Jax.
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Chelle. Thanks for the pictures of Jack- so sweet. Enjoy every minute with him. Happy about your great scan results and that your house is almost done. Happy dance on all!!!!
Delzvy joved the picture!!!
Wendy so happy for your scan results!!!! Happy dance time!!!!
I too have been awol for a bit. I was very close to Hummingbird4 and her passing hit me hard. It was expected but her rapid decline really shook me. Then my dads been in and out of the hospital and I really can't go down to Fla now. My DD miscarried and was devastated and my TMs went up So I needed to take a break!
I had my scans on Monday and surprisingly I'm stable in most areas and in my liver my mets are slightly decreased. So feeling better. I only wish I had hummingbird4 to share this news with but I have all of you!!!
Thanks for being here for me!
Bab
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Everyone hi. I've been out of sorts, let's just say. Hmm an ulcer, some emotional exhaustion...My concentration levels are very low. I guess we all think we could tackle stuff and then it hits you. I never had problems with my stomach, i did not know for 1 wk something big was going on, till I accompanied my hubby to his doc, and doc said let me look at you. That yucky thing i was bringing up, was bile. Who knew? And so it goes.
Ready or not, we move on. Feeling much better. But the tiredness and the brain fog that's a tough one. My sleeping pill gives me a max of 5hrs, then if in a hypnotic way you just wake up. Not good. NOT enough. Then my mind starts going, and it ain't good.
Anyway, Dani was dealing with more Rads bcs of issue to her eyes. Seeing grey, yep. Then we dealt with the SE. Yesterday she had a Pet/CT and after Onco being so optimistic that the numbers were coming down, she even called the primary all excited, the Pet/CT was almost the same as the last time. Yes, it says stable. I know, I know we are suppose to jump up and down, and we are, kinda, to be really honest the numbers threw us off. What can I tell you.
Now how on earth! So the numbers look better, but, there is multifocal metabolic osseous disesase, multiple rib fractures!! yep, liver the same, some bone lesions got less FDG avid, but there are no sizes, and no new stuff.
First I think it's a sloppy written report. Very general.
Onco is happy, staying with Xeloda, Herceptin one wk on 1 wk off, Ixempra 3 wks on. But really, multiple rib fractured? And Onco does not even address it. Meanwhile D has pain in the arms and lower back, that would explain it?
I need the time to read all the back posts, so I could keep up with everyone here.
If you have any suggestions re: the fractured ribs in particular, I would love to hear it. Take good care!!
And a belated wonderful year for everyone!
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Chelle, what a beautiful happy baby! Thanks for sharing he's a doll! I don't think mj will ever be legal in Kansas and I wouldn't know what I was doing with it or what to take etc. but it sounds like it's helping a few people. Am glad for you! I'm so sorry for the loss of your beloved grandfather. That's so hard! I've lost everyone in my immediate family except for my brother I lost my mom and my dad both to cancer my father-in-law and my husband. my children are still alive thank goodness with my grandchildren and that's a blessing but my brother and I are just the only two left of our nuclear family, so it kind of gets sad as you get older. Fact I lost my father-in-law, my mother and my husband all in a years time.that was a really really bad year so I can relate to you losing your grandfather it sounds like you were very close and I'm sorry for your loss.
Babs, it sounds like you got some good news. Yay, i'm really glad to hear it . I didn't know hummingbird at all but she must have been a wonderful person. I'm sorry also for that loss for you. Sending you big hugs and hoping that you just continue to get better and better!
Momall, i'm really glad to hear that Dani is stable, although I can understand your frustration at her still having so much pain and the problem with her eyes. I hope you get some information about the ribs to make her feel better, and that she continues to heal. I keep you both in my prayers! And you take some time for you, I was the primary caregiver for my father-in-law, my husband, and my mother. And then I took care of my brother when he was going through stage four cancer. It's very hard and so hard on your body. So make sure you take some time, and take really good care of yourself. As my mom told me, if you don't take care of you, you can't take care of anyone else! Such a simple thing but so profound! Sending you lots of cyber hugs!
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Chelle - I'm so happy to hear from you! And congrats on good results! That Jack is just a little miracle of nature!
Babs - Humminbird would rejoice to hear about your good results. It's so hard losing friends to this stupid MBC. I hope your Dad is OK.
Mommall - I was so worried about you and am so happy to hear from you this morning. You are going through the wringer girl. Easy to say take care of yourself but much harder to do with all going on. I wish I could be there with you to give you a hand, but if there is anything I can do, please call out. Stable is good Momall. I know we want better but this is the first good news you've had in a while. Unfortunately, fractures are part of this ride. And they hurt. I'm not sure anything can be done for fractured ribs but maybe someone will come along with other info. It certainly can explain the pain Dani is experiencing. I had a bad cold and cough recently and heard a pop while coughing in my rib where mets are. Not sure if I fractured it but the pain refers in different places. Sending much love to you and Dani.
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LMWL please give it a go I figure with stage four it can't do any harm. It gives me energy appetite and takes stress away. Dosing is soooo important also getting the right ratios for your wife's particular cancer . It is I believe well worth the bath into the red tape. I have no pain at all nothing I've been stage four for a lot longer than the two years I was officially diagnosed (was misdiagnosed for three years prior) . All I know is I feel great. And I want all of you to be well too. I don't understand the government with all these positive stories why aren't they running to do trials and testing. Even if half is bullshit it's worth looking into . Big pharma may be the culprit here.
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Gracie- we have a lot in common! I have lost my sister and father. Both so dear to my heart. I took care of them for years before their passing. Sigh..... My Mom and I are all that's left of our original four. My poor Mom!!!! Dear God please let me outlive her!!
Mom- hooray for stable!!! Next scan will show more improvement, then you can sleep like a baby! You need it!!!!
Linda E- I do love reading your posts. You always give so much hope to us!
Wendy-❤️️❤️️❤️️ YOU ROCK ❤️️❤️️❤️️
I will post more soon. Grandbabies are coming to see Mima
Love Chelle.
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Babs, I'm so happy to hear of stability and shrinkage. You sure have been on a roller coaster ride. May you continue to move uphill. And stay at the top of the hill for many many years. I think we all deserve a full year of smooth sailing.
((( Hugs ))) Chelle.
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Momall...rib fractures can happen at any time. With bone mets, even rolling over in bed the wrong way can lead to another fracture. I have several rib fractures (along with spinal fractures).
Just out of the blue, a year ago, I started having terrible pain in my left side. I thought it was a pulled muscle from putting the holiday decorations away, or maybe it was costochondritis (inflammation of the connective tissue between the ribs), and just let it go. Then I had the back pain, etc., and was eventually Dx'd with MBC. Scans showed I have four rib fractures, front and back. Dani's will heal with time. Make sure she takes it easy: being careful how she twists and turns, bends over VERY carefully, and doesn't carry anything heavy.
Glad you posted! I've had ulcers b4. It takes them a while to clear up. Try to do whatever you can for stress relief (yeah, easy peasy, huh?)...get a massage, find a little time for meditation, listen to music, etc. There's a real mind/body connection when it comes to ulcers, I've found. Medicine these days says that helicobacter pylori bacteria is the cause of ulcers, but when I had mine, the bacteria wasn't prevalent...SO stress is the culprit once again, ladies and gentlemen. We all need to be mindful about this.
Sending love and hugs to you and Dani,
Lita
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Oh how I love to come here, and feel the warmth and to hear from you guys.
Babs I just read your last message. WOW, I cannot believe the stress you just went through. What month did your DD miscarry? How is she dealing with that? We had that also, my DIL had it, it was tough, and after awhile she got pregnant again, having a baby just recently. And your father, oh, so much worry. Such terrific news to see that you are holding your own now, how is the chemo? Bearable?
LindaE how long did it take you to heal? How are you doing now? It also gnaws at me that Onco knows about her pains and did not even bother to mention the ribs. Just an overall quick quip about the total scan. You know, kinda, you are not dying so have a nice day. Does she really think, we, me or her, or any of us people (patients) don't like that word much, that we are all good to just wait a wk to get the report? Hell no, I have it sent right away to my primary, and I get it most of the time the same day, once in a while I even took a trip to the place and picked it up myself, we wanna know details. Where things are really at. Yes, we did wait for this a long long time, it's just it's stable in a sense that it did not progress, but it's pretty much unchanged from the last scan, so….
Gracie yeah you paid your dues that's for sure. I was the medical coordinator for my in laws and parents, but even though it was always emotional and full of responsibilities, this is a differente league I must say. How are you coming along?
Chelle gorgeous pictures, I will look in more details but enjoying all of it. Sleep like a baby? That's a thought!
Lita, how are you coming along? Always always look forwad to your sense of humor. I must say stress did it's job. The constant worry, I thought I could control it, but it hit me hard. And it set me back a bunch. But see what I wrote about the doc ignoring the rib mets, besides her whole back skeleton. Agh…Thank you for sharing your situation.The liver load did not change even one bit.
She had plans of going skiing, is that even possible now? I wonder.
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Hi All... nice to hear from so many of you and get updates.
Moma, Good to see you, and sorry about your ulcer. Remember to try and sit back a bit if you can. Sounds like Dani is in good hands and that the docs are watching/treating her and have her on the right track. As far as ribs go....I have a few fractured ones and yes they hurt and there is not much that can be done about it. I've had radiation to upper ribs 2&3 but that also can weaken the bones further. Which ribs are fractured?
Chelle, I swear it was not too long that you were telling us about your house plans and here you are almost moving in. Enjoy your grand babies.
Patti I love your analogy of the 7 dwarfs and so glad that you are feeling reasonably well.
Wendy, Stable is just what we want to hear. I need you to come with me when I face the legislators in my state making a case for medical marijuana. I will get 3 minutes to testify. That hearing will be booked soon. I am going to give it all I have.
Delvzy, Lovely picture and yes please send sunshine and warmth to us. We just had another foot of snow.
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Devsey MJ has been proven to slow metastatic cancer in a few studies in Europe. There are various threads on line where folks are comparing their results. Worth looking into😊
Chelle that grandson of yours looks like he needs a hug from a Canadian auntie😊
Babs I literally just jumped of my chair and did a happy dance. I did not know of hummingbirds passing it's always such an roller coaster on this thread. I'm so sorry to hear about your daughter 😥
Momallthetime for me stable is the beginning of the end for cancer when it's down (stable) I think we need to hit it with both barrels. The best food , supplements , MJ whatever your poisen is ,at least I hope so. I'm doing a lot of wood knocking lately myself.
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Momall...I would recommend that Dani NOT go skiing, even if she is an expert skier. You just never know, and it's better to play it safe than sorry. That's all she needs: a broken bone or a severe sprain.
That's another thing about cancer that REALLY pisses me off. There are certain things that used to bring us such joy and fulfillment, and now we can't do them any more because we have to be so careful with bone mets. I used to be an avid dancer (took ballroom, Brazilian samba, tap, and Middle Eastern), and now I can't do it any more. I tried just a little light twisting with some steps (so I wouldn't look like a stiff 2 X 4) last week and my back was KILLING me for days. It even interfered with my sleep. It's a little better now, but I every time I get a new ache or pain I think, "Geez, is this a new bone met, did I fracture another rib? When will it end?" I'm not getting my next PET scan until the middle of next month. Right now, I'm trying to be optimistic. If things progress, MO says she'll have to take me off Xeloda and on to IV chemo. Fun, fun, fun!
She also wants to move me over to Aromatase Inhibitors, but I've heard so many bad things about them, especially Arimidex (agonizing bone/joint pain, insomnia, gastrointestinal issues, unrelenting fatigue, dry eyes, etc.). I already have dry eye, fatigue, insomnia, and the trots with Xeloda, so it might not be as bad as I anticipate. Don't know how I'll deal with the bone/joint pain yet. They say Claritin helps. I'll just have to deal with it as it comes.
Take care of yourselves
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Lita, if you've survived Xeloda, you can probably handle AI's. There are things you can do on AI's to greatly lessen the joint pain, insomnia, hot flashes, etc. But with Xeloda, there is just not much if anything you can do to keep the HFS and diarrhea at bay.
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Babs - Glad you are back and so glad you are improving. Hummingbird is nearby as is Stephanie and all those we've lost. But of course we miss them.
Chelle - hello! cute kid!
LMWL - You can get CBD Oil anywhere and online because it is not a controlled substance. However, people generally treat cancer with a mixture of THC/CBD under medical cannabis laws (THC is a controlled substance). Medical cannabis is easy to get in the US in many states including California. I feel cannabis should be treated like any other drug ... the treatment needs to be supervised with someone experienced in both cannabis and in breast cancer.
The babble on some of the discussion boards on medical cannabis and cancer makes me really uneasy and concerned for those who seem to be following the advice. But there are an increasing number of legitimate and experienced practitioners. Given the stuff is not cheap, it seems worth getting some expert advice specific to your diagnosis. If you want ideas, PM me.
Medical marijuana is legal in NM and I have a card. I take small amounts of THC/CBD in the evening to ensure I get a good deep sleep as some of the drugs and supplements I take interfere with sleep. It's been awesome for sleep. I get great sleep and I wake up alert and ready to go.
Many people take cannabis to control pain. Our country can certainly use an alternative to opiates and it makes me very glad to hear that it works for pain for many people. Didn't work for me, however.
At higher doses and slightly different ratios, I think cannabis can control cancer. I've chosen to pursue different tactics for the moment but I've kept an eye on Wendy and a few other people who complement their standard of care treatments with cannabis. I am convinced it worked for them. If complementary cancer treatments interest you, do it sooner rather than later. I think many are effective and the main problem is that people wait too long to try them.
>Z<
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waving hello all and checking in to see how everyone is doing. Actually a couple great bco sister's have been keeping me up to date on how y'all are.
I have been having a super hard time. So much pain that is uncontrolled. Mo said yesterday I am pretty much at my safe max. He said no other patient is taking the strength and qtys that I have built up a large tolerance to no avail. I have spent the last several months pretty much on the couch , recliner or bed. Very little if any quality of life. Yesterday Mo says I need to change tx because xeloda no longer working according to progression on latest MRI. Still only in bones. No organs. Last tx that I would even consider is AA. Affinator aromisin. Reallyscared of mouth sores from it. Only other options are IV chemo Which I refuse since no quality of life. I guess the end is very close. Just have to decide try the AA or be done. Been really hard on the family.
Came to research the AA tx and see some old friends
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Mommall - No skiing for Dani, please! Avoid activities in which she can fall. My last week bone scan will say (when I get results and as you know it takes forever around here) if I fractured the rib. I can speak of other fractures I have. Pubic bone healed at some point and then fractured again. Femur fractured even with rod in it. Another fracture in pelvis and no healing there. Docs have a blank face with me re fractures and the cause of it, except for those which are supporting bones. That's a different ball game and they need immediate attention. Spinal mets causing problems may require rads or other tx. I increase my pain meds as I go along to find a comfortable level.
Lita - I think you will find AIs much easier to tolerate than Xeloda. And remember we all react differently. Aside from joint pain and stiffness, it's a walk in the park for me. Hoping the same for you.
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Patty - We must have been writing at the same time. Glad to hear from you but sorry on new turn of events. This really sucks! There is an A/A thread where you'll find a lot of info. I hesitated to text you because I knew you were not up to it. I'm always here for you and you can text me anytime should you need to "talk". You have a very special place in my heart. Sending love and hugs.
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Patty- all I can say is many, many prayers and gentle hugs. Thanks for checking in.
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Hi Patty great to see your smiling face again. I'm sorry to hear you have to change treatments again. Who knows this may be the magic bullet this time we just never know. You are so young and I know you have been through hell I can't even begin to understand but please please don't give up. We all love you
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Patti - There are many options if you choose to keep going. Affinitor is not on my list either. Long term studies have shown it does not prolong overall survival and the side effects tend to be hard. But ... so many other options
If you have been off hormonals for a while your cancer may have re-sensitized to hormonals. IOW you can go back to letrozol or fulvestrant and give it a try.
If that doesn't work or appeal there is a fourth line of hormonals that is certainly worth a try. One of them is a very old treatment where they actually give you high levels of estrogen. It does work for many women. And if it does, it often re-sensitizes the cancer to hormonals so you can go back to hormonal treatment when the estrogen therapy fails.
There are other CDK 4/6 inhibitors coming out that would be interesting to try if you go back to hormonals. We don't know if they have a different mode of action and can be a second line treatment.
The complete list of fourth line hormonal treatments from Bestbird's Guide is: Toremifene (Fareston), Estradiol, Megestrol Acetate (Megace), or Halotestin (Fluoxymesterone). We don't hear much about them, but they all work to some degree and should be considered.
I don't see Xgeva or Zometa on your list of treatments. If you haven't tried that, then one of these drugs should be added to whatever you try next. These bone strengthening drugs have been found to control and kill cancer. They are generally used with chemo or hormonals but I don't see why you wouldn't try them on their own if you choose.
There are clinical trials to consider. PM me for my list, but if you go this route a cancer navigator may do a better job. I can give you some ideas there. However, if travel is not possible for you, you can win this with solutions that are at hand.
I am all about quality of life, but I have not written off chemo. There are many women who live very well on chemo. I think a bit of chemo and then going back to hormonals, possibly with ribociclib or abemaciclib (the ibrance like drugs that are on the horizon), could potentially get you stable for a very long time. Chemo is not what it was. They have tweaked the drugs and the dosing and they have figured out how to manage the side effects. Please don't write off chemo.
That said, we are just beginning to figure out metronomic low dose chemotherapy .... There is a group of oncologists that have figured out that chemo has a totally different mode of action in low doses and is sometimes more effective. Of course the side effects are considerably less so part of the improvement in efficacy is that you can do it for longer.
If you are determined to write off all the standard of care options you are in very good company. You can consider alternative treatments. But seek out an experienced oncologists who practices complementary and alternative treatments. If you are going to go entirely alternative in approach, Dr. Google cannot be your doctor. I have ideas to get you access to excellent alternative care, even in Arkansas. The limiting factor for this approach is $$. You can begin on this route with $5K but you can spend a lot more.
I know you are in a lot of pain and that can take away your ability to fight. If you want to pull any of these threads, PM me and I will help as much as I can.
Even without chemo, you are nowhere near the end of the road if you choose to keep going. However, we each know what is best for us. There are many women on these boards who have shown us not to be afraid to die if that is our choice. Personally, I'd like to see you around a long time and I hope you fight, but I don't have to do the fighting.
Whatever your choice, gentle hugs and prayers follow you on your path ...
>Z<
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Patti,
I have just completed an almost complete course of EC chemo and was able to work through it and only my eldest daughter knew that I was on chemo, my two younger sons did not even notice. I managed 5 of 6 doses, the first 3 were a breeze, the 4th and 5th not so easy. Don't write the chemo off, there was never a day where I was too ill to do anything and I would definitely do it all again if I had to.
I refused the last dose as the chemo for me is a first line treatment to reduce the tumour burden and it had already done that by session 4. If I had to take the 6th I would do.
Sending you much love and hope and faith
Elen xxxx
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Patty, I'm not versed enough in all this yet to even begin to give anyone advice, but will keep you in my thoughts and prayers.
Momall, I'm doing ok, increasing pain in left hip but everything else seems to have calmed down. Thanks so much for asking. You and Dani remain in my prayers.
Well we have freezing rain right now. Am hoping the electric stays on and everybody stays safe!!
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Patty. I'm on Taxol -3 weeks on and 1 week off and still work full time, have an active social life and pretty good QOL. Don't discount the chemo. Right now I'm stable which for me is great!!!! Plus there are studies. Please stay open to other treatments cause you never know which one will help!
Babs
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Patty, you've received some excellent advice from the women on this thread, but only YOU can decide what is right for you to do. I agree, don't discount the chemo yet. If you can find a good chemo nurse navigator at your clinic/hospital, s/he can guide you thru the chemo maze and offer a myriad of suggestions to get you thru the SEs. As Z said, chemo is NOT what it was even as recently as 5 years ago. I also agree that you should be on some type of bone treatment: Zometa infusions or Xgeva. Zometa can have some SEs, too, but I feel that the positives outweigh the negatives.
Nevertheless, at some point we all have to decide when enough is enough, and whether or not we're finally too sick and tired of fighting and ready to let go. If this is what you choose because of rapidly declining QOL, we will lift you up and support you in that as well.
Remember, we're all here pulling for you and you inspire all of us.
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Wow Z you rock😊You just totally cheered me up. We have so many options..
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Senfing hugs and prayers
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