Bone Mets Thread
Comments
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I am so sad to read Patty is in pain- I can't wait till she is feeling better. I pray this works quickly. Prayers to you PP.
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Patty, if you are reading this, know we are with you in spirit. Thanks Linda for letting us know.
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Patty, I am soooo sorry you continue to have problem after problem. I hope you can heal quickly and get home to your loved ones.
XO
Amy
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Thank you all so much for all the kind words and helpful advise. I can tell this Discussion Board will be a great resource for me in the future. I definitely feel more comfortable with the CT Scan and I'm already ordered Radical Remission.
Best Regards,
Kathleen
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Hi everyone,
This is my first post in this forum as I was just diagnosed with bone mets last week. I start two weeks of radiation Monday on two spine mets and I have one each on the shoulder and femur.
I have also started Arimidex after taking Tamoxifen for 8 years.
I heard today from a friend that clinical trials have showed some benefit from cannibus oil regarding the metastasis of triple negative breast cancer. I did find some information on some very, very preliminary studies that seemed to show reason for further research.
My question is this -- and please forgive me if I'm posting in the wrong location -- I don't have triple negative, I have estrogen positive, cancer. But, medical marijuana was recently signed into law where I live in Pennsylvania and I'm thinking of trying it when it becomes available, mostly because I don't see a downside.
Does anyone have any anecdotal experience with it?
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this board moves so quickly it's hard to keep up. Have been lurking but not posting as I have been back in hospital for 10 days - remnants of previous infection so they will not discharge me. My SP sweetly came to see me to tell me I must take 4 weeks more off once I am discharged as need rest. Agree but v frustrating.
Peace to all.
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Bosco, Sorry you are back in the hospital, and I can only imagine how frustrating it is for you. We would all come visit if we could. Are you having much pain with the infection?
Patty, How are you doing?
Terre, I could use some cat photos ( cat therapy)
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IWrite- If it wasn't for you stating you had worse pain after starting meds then you did before..I would have never believed that my mets were healing. This group is so important-
Kmm- I am looking forward to reading it too. I have tried to completely change my life around after this diagnosis. I am a better person health wise and mentally too. I also went Vegan.. not so much fun.... but I feel like I am doing something to maybe help me.
Newly- Welcome.. you can turn this into something really positive too. I am sorry you are here but I remember when I lurked for 3 months waiting for the dreaded diagnosis to be real for me. As for the CBD.. I did get my card- It was just legalized in NYS to purchase in January and my MO from Dana F referred me. As Suersis said, it can help with nausea, etc. but it isn't going to stop any cancer cells in its tracks. I first did CBD oil only, you can get that shipped to you (Charlottes Web) Realm of healing without any card. It does not have THC in it. I did that first and really didn't see anything that would say oh that helped my pain or had me sleep better. I then got the CBD/THC oil 1:1 Ratio- and added more CBD oil to make it 6:1- Pharmacist helped me with that. I noticed that it intensified the pain I had. Like my tender scalp was more intense etc. That is what THC even a small amount will do- It didn't help with inflammation and it didn't help me sleep. There are studies that CBD have killed BC cells in mice but the amount of CBD for it work in humans is like $1000. month to try and see. One of our members Chelle has the most experience with it. She has not been posting due to moving and building a new home, but I spoke with her last week, and she is contributing her bone success to the tamoxfin- Study also says er/pr should not do higher counts of THC- Did you have a bone biopsy done when your cancer came back?
Bosco- I sure hope you get home soon. hugs
Linda Lou- I have a 4-1/2 pound dog that looks like a cat. He is sweet but naughty as can be.
Happy Friday to all.
Carol
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Good morning all,
Newslady - welcome to this thread but sorry you have to join us. No experience with cannabis oil myself, just want to welcome you. Best wishes with rads and Arimidex.
Bosco - oh no, sorry you're back in hospital. Keeping you in my thoughts. Glad you checked in.
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Patty and Bosco sending you thoughts of healing and peace.
Kmm and newslady welcome. This is a wonderful place for support and wisdom.
Kmm My MO uses pet scans often. I had them every 3 to 4 months in the first year and now every 6 months. At first I loved the reassurance of pet scans and dreamed of having one in my basement. This month I was offered a pet scan and asked that we wait a month till my next appointment and treatment team agreed. I assume I get scanned so much because tummor markets are meaningless for me. I have really never been completely pain free and inbetween pet scans I have had mri and ct scans. My treatment team does not use bone scans with me. My MO prefers mri scans and my RO prefers pet scans. I think each situation and doctor is a little different. I really like and trust my treatment team. They take time to explain things to me and have helped to set me up for a second opinion when I needed more info.
Newslady I have no experience with medical marijua but have been thinking of cannabis oil for pain. I would love to hear about your experience/decision making on this.
Thanks again to all who have reached out to me about my mom. It has been such a help as I continue to grieve. My mother always found ways to connect with other women through formal and informal groups. She would love that all of these wonderful women are in my life.
Peace to all
Mary
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newslady, I'm glad you've found us. Have you also found the thread here on MM? Here's a link, but I'll also bump it now so that it will appear on the Actives List as well. https://community.breastcancer.org/forum/73/topics...
Bosco, oh no... I am so sorry that you're back in the hospital. 10 days is far too long. Hopefully the 4 weeks off will give you an excellent chance to rest and rebuild. Big hugs to you from me!!! And if you want to PM me your address for the list I keep promising to update (I don't think you're on it without looking), some of us who might want to send you a card while you're recuperating.
The weekend is almost here. My sister will be stopping by (from the East coast) en route to a medical conference in San Francisco. She's also a 2x bc-survivor, so we always have plenty to talk about, although all the bc and research talk drives my hubby crazy when he's around.
Have a good weekend everyone. Hope that means going home for Bosco and Patty.
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Hi ladies,
Wishing you all a good weekend. We may be getting kittens next week to foster temporarily. I haven't told my daughter or husband yet. I will tell my husband but I want to surprise my daughter.
Hoping Patty and Bosco get out of the hospital very soon!
My daughter's birthday is next Friday. I hope I can make her feel very special even though me and my husband aren't getting along. I just want to keep the peace for the children. I'm not interested in fighting and keeping myself nice and calm as it makes me feel better anyways. I took a walk around the high school last night and it was very calming.
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Hi everyone,
Patty and Bosco - Ugh! It's no fun being stuck in a bed at home...much less in the hospital! Hope you can get some pain relief and return to your regularly scheduled lives very soon! You deserve some sunny days.
Re MM - The ladies are right...Chelle has had more experience among those who post. When I was visiting DD in CO, I used the "Bud Rub" which you rub into places where you have aches. It helped a bit and I didn't notice SEs from it. I tried the drops and 1/4 of one cookie...don't know why they call them edibles...they are awful. Felt totally out of step for hours afterwards and haven't tried it again. When I reach the point that it will help to "take off the edge" rather than "soldier through" perhaps I'll reconsider. My Onc said he would support the idea.
They legalized it in Illinois, but you must pay an application fee, get a background check and get fingerprinted to get the card. (Wondered if they wanted applicants to spend the weekend in jail to feel the total experience.) Can you tell I was annoyed?
Have any of you had a relaxation massage since your DX? I didn't read about in online until afterwards. It did one last week and swear it broke loose random cancer cells to repopulate my bones based on new aches that started afterwards. Hitting the supplements and exercise in a big way to flush out any random toxins that start with "C".
If Terre doesn't post a cat picture soon I may have to go to Petco and look at some real kitties. Cristina - fostering kitties is tempting...there would be some pushback here.
Practicing gratitude and mercy this weekend and working on simplifying life.
Blessings to you all!
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Kathryn- I got a massage right before I was diagnosed. Thinking I had muscle aches. It turns out that my ribs got multiple compression fractures from the massage not sure to this day if lesions were underlying factor there. I do know that today I have some burning pain that started yesterday out of no where to my ribs.We will see what tomorrow brings. I was cut back to 100 for the last cycle. I hope it's still working.
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Thanks so much for all of this information LovesMaltes. When you say: "Study also says er/pr should not do higher counts of THC..." do you mean estrogen positive shouldn't do high THC? Sorry I'm still learning your lingo. I don't have nausea or anything yet, so I thought the CBD/THC 1:1 would be the thing to try. I do see what you're saying about the very high amounts -- I understand you would need to take it three times a day to possibly see results. I guess I am surprised that there has been no further research. BTW, my onco did tell me that he would happily prescribe it to me when it's available but I appreciate other options -- maybe it would save money.
I have not had a bone biopsy and no one has even mentioned it to me. Should I have one? I'm 46 (was 38 when I went through it originally) so I'm guessing that the drs think it must be cancer -- what else could it be? I had bone scan, PET and MRI.
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Newlady- Bone biopsy just confirms that it's the same breast cancer etc. sometimes the cancer will change from estrogen pros + to negative. I had a bone biopsy and it came back er/progesterone neg but first time I had BC it was positive. As it turned out so far the treatment is working and the biopsy didn't give us the correct information. I don't think CBD oil destroys BC cancer cells. There was a link posted somewhere about it. I will look for it for you.
http://www.unitedpatientsgroup.com/blog/2015/06/02/treating-breast-cancer-with-cannabis-why-the-treatment-must-match-the-classification/0 -
Newslady, there's hope that MJ will be reclassified as a DEA Schedule I, not sure to what, II? This should allow more research to be done. NCI did a study and found that THC Delta 9 does in fact kill cancer cells:
- A laboratory study of delta-9-THC in hepatocellular carcinoma (liver cancer) cells showed that it damaged or killed the cancer cells. The same study of delta-9-THC in mouse models of liver cancer showed that it had antitumor effects. Delta-9-THC has been shown to cause these effects by acting on molecules that may also be found in non-small cell lung cancer cells and breast cancercells.
- A laboratory study of cannabidiol (CBD) in estrogen receptor positive and estrogen receptor negative breast cancer cells showed that it caused cancer cell death while having little effect on normal breast cells. Studies in mouse models of metastatic breast cancer showed that cannabinoids may lessen the growth, number, and spread of tumors.
http://www.cancer.gov/about-cancer/treatment/cam/p.../_3
Also, the link to BCO page dlb bumped: https://community.breastcancer.org/forum/73/topics...
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The amount of CBD oil to take would be astronomical in price to equal what the study showed in mice . I have spoken to MO and Pharamist regarding this. There is also evidence that higher THC will increase BC cells in Positive hormone receptor patients.
http://www.unitedpatientsgroup.com/blog/2015/06/02...
I did the CBD oil for 1 month and then 1:1 I'm relying on my Ibrance/ letrozole to help me
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Hello everyone! Welcome to the new ladies. I'm glad that you have found us. I have been dx for a little over 7 months now. I can tell you that you will be able to emotionally grasp this dx, in time. I was dx multicentric, multi focal, bilateral bc. ILc and idc. I have never had breast cancer before. It was all so shocking and immediately threw me down the dark path. You will be able to find your new normal soon.
I would certainly not consider myself an expert on CBD-THC. Although, I do use it daily. My most recent scan in December showed improvement in all breast tumors and stable bone mets. The bone mets are everywhere!! I have had success using MJ and tamoxifen. I can't be sure what is working, so I'm not changing any tx for now. I feel good. I'm positive that MJ contributes to my daily QOL.
I have been away from the boards for some time now. My house was put on the market yesterday. In the last five weeks I have gone through 23 years of stuff, moved my family into an apartment and staged my home with my favorite furniture and nick nacks. It was a s*\t load of work. But through it, I sort of bounced back into myself again. Staying busy was exactly what I needed to find my new normal. I'm still capable of doing almost everything I have always done. I'm just more careful to not fall or carry anything too heavy. I will write another post with the MLS number, so you can check out my handy work, if you'd like. I have never sold a house before. It's all been very nerve racking! The market here is crazy! In two days we have had 21 viewers and 4 contracts. More viewings tomorrow. We are already 11,000 above listing price. The buyers can keep hashing it out. I'm happily situated and waiting on the new house to be built. We will be stuck in this apartment for nearly a year. At the time that our house is finished, it will feel like buckingham palace.
I have been reading periodically and pray for all of us daily. Love to Wendy,Patty,Annie,Carol,Deanna,Ellalou,Lindalou,LindaE,mom all,babs,Bosco,Lynn,Kathryn,Aurora,Dee,Mary,Terre and everyone else who's name escaped my mind. May we all be blessed!!
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MLS is 8827042 you can check it out on Zillow
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Chelle - That sounds all so exciting. I will look at MLS for sure!
Quick update on Patty: Rib procedure was done on Friday and went well. Patty is feeling better and going home today!
Happy Sunday to all!
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Hi everyone,
I have to catch up on everyone's posts because I haven't been on lately. Sorry that I am many pages behind. I was feeling rather down and took a break.
Welcome to the newbies. As others have said, and you have probably already discovered, there are many great people who contribute their knowledge and heart-felt feelings to this thread. It's a wonderful group of people who have help me get through the past 10 months since my diagnosis.
Bosco, I am so sorry to hear that you are back in the hospital. You remain in my prayers, and I hope you are home soon. I think some time off from work is a good idea. You have been through so much. (((Hugs)))!
Patty, Are you home or still in the hospital? I do hope they get to the bottom of things.
Chelle, You must be exhausted. You have been very busy. It is great news that your house is getting so much traffic and great offers. I plan to look at your listing. Maybe I will move to Colorado. Oh wait, I live in inexpensive NH, so I could never compete will all those other people who want to buy your house!
Dee, Your garden links great. I will try to remember to post a picture of the very first flower that bloomed in my garden. I took the photo last week. I have a few more flowers now. Yup, our growing season is just a bit later here.
I am still waiting for my spit kit, but I did read a hint on another thread about how to encourage spit to happen. Lol.
Hello to everyone. I hope you are having a good weekend.
Lynne
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Chelle- House looks amazing. Great job with staging!
Lynne- I'm sorry you weren't feeling well hope all is better now
Glad to read good news on Patty thanks Linda for sharing.
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Hello. I am not sure if this is the right group to post to. I am six years post BC Tx with no recurrences. However, I am seeing my PCP tomorrow for a pain I've had at the base of my spine for a few months, and although I know it could be one of any number of things, I'm scared it could be bone mets.
Can anyone tell me if they had pain before diagnosis, and where, and if there are any distinguishing characteristics to bone mets pain or location, etc.?
Sorry if this is not an appropriate post for this topic. If it is, please just let me know.
Thank you.
Whitney
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Whitney,
I hope you will not be joining us, but to answer your question no pain whatsoever. I was shocked to hear I was Stage IV from the outset of my BC dx. No pain, no twinges of pain, zero. Actually, let me back up - the month before my dx I was limping around because of pain in my hip - turns out I had a pathologic fracture from bone mets in my pelvis. So technically I had pain but that was from a fracture - I have multiple mets in my spine, ribs, femur, hip and pelvis but no pain.
Keep us posted on what you find out. Good luck
Amy
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Whitney, I did have pain in exactly that area, and it turned out to be a very small, single bone met. The pain led to a lot of muscle clenching and then sciatica and other pelvic pain from the clenching. But it fooled all the doctors, including an orthopedic oncologist, so I don't think that just having pain in that area means mets. Even after the PET scan, the orthopedic oncologist was convinced that it wasn't mets and thought it was some rare genetic anomaly before the biopsy results came back. I guess what I'm saying is there is just no way to tell without proper testing. One person may have no symptoms but be filled with mets, another may have lots of symptoms that end up being just a bad bout of sciatica or tailbone pain, and yet another person has pain that ends up as mets but is in a different area than the pain. I know it's super scary because I was right where you are less than a year ago, having pain and wondering, but chances are better than not that it's just garden-variety back pain, and I am praying that is all it is. Try as hard as you can not to worry, and let us know how you come out...I hope free and clear. Hugs!
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Whitney, I had pain in the area you are talking about... I had an mri and it turns out that the pain I was having was sciatic. MRI did show that it was given weird signals of my thoracic spine and suggested because of my history to get a bone scan. Bone Scan had uptake in areas that finally a cat scan confirmed to be cancer and not in the area I ever had the pain. So I found the cancer because of sciatica. I pray this is nothing more than sciatic.
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Whitney, any pain I have had from bone mets has been a deep burning sensation in my bone, like a deep, burning bruise. I hope it's nothing and you continue to do well on tamoxifen. I know it's hard not to worry. I also have a spot on L4 and L5 and have never had any pain from them. Hello to everyone else. Hope everyone is doing OK. Dana
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Whitney, my experience has been sometimes there is pain, sometimes not. Wishy washy, I know. It is always best to get pains checked out if they last more than 1 - 2 weeks. Hoping all is well for you.
I need help on how to reply to someone who heard I was "sick" and is hoping I'm feeling better. Grrrr! I've just started my 4th year as a bone metster. My husband knows he told this persons husband. Two things to address: (1) people really aren't aware of what stage 4 is (2) I am beyond sick. Any tactful ways to reply to this person would be greatly appreciated.
Thx ~ Suzy
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As usual, I missed several weeks of this thread and am now so far behind!
MaryK87 - hopefully you have solved your pain problems by now but if not...I still recommend Methdone. Tramadol is horrible! I don't think Methodone is hard on your liver... at least, I was never told that (but you know how that goes...)...Methodone literally takes away the pain with no side effects... no feeling woozy or out of it or drugged up or anything! The only issue is the withdrawel, if and when you are ready... it's very difficult and has to be done slowly. I think it's worth asking about. Keep me posted!
Deanna - I am going to the Spine Clinic I told you about... the one that is part of Univ.of Colorado Hospital where I am treated. My onc. said the doctors are "wizes" and can fix just about any back problem... they will certainly have their work cut out for them with me as my spine literally looks like a big "C" at this point from the compressions and the curves, but I will let you know how it goes. I am continuing to have pain in my lower back and I am hoping they can focus on that first.
Jen - I had radiation to my spine/ribs/etc... immediately - before chemo, actually. I think in my case it was an emergency because I had so many compressions, but it did take away all of the pain, and my understanding is that it killed the lesions.... that although my scans show spots where they used to be, they are all gone now - mostly as a result of the radiation. So...I don't think I would rule it out. I have also been on Xgeva - a bone strengthener - from the beginning. I get one shot a month. I know some people have side effects. but I don't have any. It's the one thing my oncologist says I can NEVER skip.
I can't keep up with who posted the pictures, but they were beautiful. Charleston is on my list of places I want to go...SOON.... and I love Vancouver, and especially Tofino. That part of Canada is breathtaking. My husband has a business trip to Vancouver in June and I am tagging along, and hoping we can make a little vacation out of it and get over there, even though its' remote and hard to get to.
Hello and hugs to everyone else!
XO
Andrea
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