Bone Mets Thread
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Hi, so I'm going to Ca for a little bit and one of my friends offered to get me some medical marijuana to try but I don't know anything about it. Can anyone give me a little guidance? I'm triple positive with bone mets. Thanks.
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Txmom studies in mice show that high THC MJ is a risk with pos estrogen. CBD high concentration was better. I am not near a computer but maybe someone will post the link.
Have fun!!
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Thank you all my sisters for the well wishes. Waiting for results does suck. Hopefully tomorrow or Wednesday I'll hear. I hate to jinx myself but based upon my TMs I'm expecting good results!!!! I hope I'm right
Babs
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txmom,
Harborside Health Center is a very well regarded mmj center in Northern CA. They have some info on their site which may be helpful and they are good about answering questions. Good luck.
http://www.harborsidehealthcenter.com/
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TxMom-
Found the article I was referring too
Thanks Caryn for the other link. Going there now to read.
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Healing doesn't mean the damage never existed it means pain no longer controls our lives
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Babs- Hoping you hear good news with your scan results. 😃🙏🏻
Deb
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Thanks for the links. I will check them out. Hope everyone is feeling well and enjoying the summer. Babs, thinking of you and hoping you get really good results.
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Hello to all,
I've been away awhile due to a terrible pain flare which I'm happy to say has subsided. I couldn't do a thing but rest, rest and rest.
Babs, sending all my positive mojo your way and I have to say I'm feeling optimistic.
Aurora, I love that, I think I actually have it saved somewhere. How have you been?
Momallthetime, I've been following your posts about Dani and it's overwhelming to see everything that you're trying to do. I'm sending all my love and big hugs to you both. Dani has been amazing through all of this and so lucky to have you.
Wendy, I'm ecstatic at the results so far from your clinical trial, very encouraging!
Carol, how was your appt today? Did you ask lots of questions and get them all answered?
Lynne, how are you and how is dh? Thinking of you both.
Deanna, Linda, Lindalou, Terre, Andi, Caryn, Jennifer, Deb, txmom, and everyone here, wishing you all well and hugs to all, Annie
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Hello Annie (and all of you) I'm doing fine, I read all the posts and rejoice with the ones having good news and feel sad for those struggling sending hugs and prayers. I don't join the conversation because for the most part I'm ok I'm in Ibrance/faslodex and has me stable. Everyone here is so knowdgeable that really there's little left for me to say so I pray instead.
God bless,
Aurora
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Annie oh my goodness, where have you been? what did you take for your pain? why did you have so much pain? wow really missed you.thanks so much for your support.
I FINALLY got a great radiologist onco in a large center that is gonna look after Dani, now comes the part of how to proceed with the lesions in the skull, it's def pushing out of the skin(can u imagine, and she might loose the hair permanently there, IN the front) she will freak out! And the new liver spots, we'll hopefully get answers, sent them all the files, now he's got work to do.
I remember someone sending me info on the UPA, i am so sorry but who was it? Someone told me also about a friend that is a nurse in one of these places i think, I tell you my brain is fried, i gotta get some groceries but cannot leave the information center!, and i was begging for doc in NYC to see us, but she does not take "transfer of care patients" did you ever??? Exclusivety (my word) all the way, that's what they call chutzpah! Really?? We did not need her before, now we do. Sick and sicker.
Carol thx so much for your help. Deanna was it you that sent some info?
Onco now wants to hold off the new miracle mixture till we get rads down. Arghhh. He wanted Lynparza/Keytruda/Herceptin/faslodex.
I better find some delicious Housewives something to watch now, gotta get my head out, it's been a long day.
Love ya all, you are the best!
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LindaE was it you, that gave me a doc in UPA? I can't remember, we wanna try Dana Farber or UPA.
I did get a name in UPA - Dr. Brufsky (yep), anyone ever heard?
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hi ladies, got my scan results there today and unfortunately results were not good. Been on arimidex 2 months and there has been more progression. Zoladex finally seemed to work this month in 2nd cycle. Spots on sternum and spine are bigger and a few to spin and both hips and sacrum. I was Er+ 100% orginally so was hoping to do well on hormone. He also said that there as a little fluid on my lungs!!! He said that there was a shadow but that it was not confirmed as cancer. No lymph nodes or nodules so they were keeping an eye on it. Sounds like cancer to me. 1.4mm spot of liver still same. Also can't confirm that is cancer, has been there a good while unchanged. He says its just in my bones. He's doing chemo. Abraxane which I've never heard of. 1 every 3 weeks. Anyone any experience on this drug or thoughts. I asked about other chemo and he said this one is very good for what we need, it will work quicker than hormones...I don't know. I have holiday booked 10th July for 2 weeks in the Mediterranean. He is letting me go and starting immediately when I get back, week beginning 25th. Don't know if I'm crazy to delay treatment but need a holiday. He has stopped me going away before so I'm sure he would have put his foot down.
Lindae45 - hope you get on that ibrance trial. I would have like to try it orginalky 2 months ago but not available in UK yet.
Debi - good news about result esp lung nodule. I'm. 100% er too and first ai did nothing.
Cjanet - hope the xeloda kicks it's ass
Wendy - great news about your trial results! What have you been doing diet wise?
Hindsight - have heard kadcyla is very good. Read an article the other day a
bout a woman in uk who has been stable for maybe 3 years on it. My Onc said something about bone marrow in my bone biopsy. I asked him if I had bone marrow mets and he said everyone's bone marrow is effected so I didn't really get a proper answer.
Momallthetime - Hope the next line of treatment works well for your daughter. Sounds interesting.
Babs- hope you get good results .
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Lilly i Was on Abraxane for about a year and my tumor markers went down, left it to go to IbranceFaslodex combo but I can always go back if need be. Abraxane wasn't as bad as my first chemos in 2010 but still lost my hair had nausea and vomiting. I started taking it 1 a week for three weeks then one week off but it was too much for me so she switched me to once a week for two weeks then off one week and it was much more manageable. Good luck with hope you get good results.
Aurora
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That's good to hear Aurora, thanks. Maybe it I can get things under control with this for a while. Hopefully then ibrance will be available in the uk
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Lillymille. Hoping the chemo kicks your mets right in the a-s!!!!
Momall. If God forbid Dani does have that permanent hair loss then I'll have her see the dr I work for and I'll get the txt covered by insurance. I know this part is minor but we're still women and hair loss is one thing that can be fixed I got insurance to pay for another cancer patient that also had hair loss which shocked everyone!!!!
Babs
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Babs thx, will have meeting with rad onc today.
I hope whoever gave me those wonderful names Chime in.
LovesM working on the one on DF. But a yr ago when I tried to see someone there, they called me and said she would have to be off e/t and then they would see her, could that make any sense?
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MomAtt that makes no sense. You would be going there for second opinion. DF is a good fit for Dani. Especially with the temperament I have seen from 3 different MO that I have met. I WILL reiterate to please google Dr Partridge. That's who you want second opinion with.
An example: One of my appointments I listened to what MO had to say then She could see I was overwhelmed (was not even bad news) but I was emotional and she said to me " Carol what can I do for you to help you feel better"? She had more patients to see but was not going to dismiss me until she reached out to me to help assure me where we are at. I'm so hung up on TM that I fail to be happy when my scans are stable because my TM are always going up. Dana is easy to get to. Has free valet parking.
I also had a great RO but he was great at doing rads and also saw my pathologist report and said to me - I'm not so sure your treatment protocol is what I would do. Glad I took what he said with grain of salt. Pathology report interrupted by a patholgist at Dana Farber may have information that could be life changing for Dani.
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LillieMillie - don't panic about the fluid on your lungs. (did he say "in", or "on"?) I had so much fluid in the area surrounding my lungs that one of them was partially collapsed. They kept draining them, and they would fill back up again.... but they tested the fluid over and over and NO cancer cells. Finally I had a pluerodisis (sp?).... a not so pleasant surgery - twice - once on each lung - to drain the fluid and do something to the lung and surrounding area so that there is no longer any room for fluid. (hard to describe) My lung re-inflated and I haven't had a problem since, and that was three years ago. So...I guess that is a long way of saying that even though there is fluid, it doesn't mean there is cancer floating around in it. More often than not it's a side effect of one of the drugs you are taking. So glad you are getting to go on vacation! It sounds wonderful...I hope you can relax and enjoy.
Hello to everyone else!
XO
Andrea
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Good morning all,
Babs - wishing you good results!
Mommal - no it wasn't me. Can't believe what you and Dani are going through. I hope you get better luck at DF.
Lillie - so sorry about your progression. Seems your MO has a good plan in place. I hope Ibrance gets approved soon in the UK. My MO wants to see me on 6 July regarding the Ibrance clinical trial and get the ball rolling to see if I qualify. Only 180 participants across Canada. Chances are slim, we'll see. Enjoy your trip!
Annie - I'm so happy to hear from you, been thinking of you a lot lately. Darn pain flare!
Hugs all around.
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Thanks Andi67 for the post. He said no cancer in lung could be seen and lymph nodes looked fine. He said it looked shadowy but they coukd tell what it was. Had mri and ct scsn. I'm not sure whether he said on or in. I know he said at the bottom but tried to reassure me that this chemo would go straight to any areas of cancer. 3 years ago you would have been on arimidex as I'm on now. Hopefully it is some weird side effect which is what I choose to believe until I get back from holidays. He'll xray my chest when I get back and see what's happening. This thread is a lifeline at times when we are worried!
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good morning all!
So nervous I couldn't sleep, appt today in Vancouver with trial dr and labs. Hoping to find out a bit more about the trial. Good thoughts for today! I'll try to post asap afterwards. Thanks for all your support!
cheers, dee
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Dee, Good luck been thinking of you!!
Carol
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Dee. Hope all goes well today.
Just got my scan results and I'm over the moon. I'm NED. Can't really celebrate since I'm visiting my folks who I never told about my progression. But will do a silent happy dance. Thank you all for your support and positive vibes
Bab
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Babs, that's fantastic news! We're doing a happy dance with you!
Cathy
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Babs, absolutely fantastic. Bravo!
Dee, can't wait to hear from you.
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Babs!! Yippie!! Over the moon is understatement!! So happy made my day!!
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Dee best of luck!!
Babs this is just fantastic!! Happy dance.! You are so considerate in not telling them, nice.
Babs, how was Xeloda for you? I think Cristina is having a hard time with it.
And what is the secret with Faslodex, i know in the pages before there was talk about how slow to give it, can someone chime in, he is considering changing from letrozole to faslodex
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Yay Babs! Great news! Also NED, just found out a couple weeks ago! Celebrate!
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