Bone Mets Thread
Comments
-
Patti hope you feel better soon, have you taken Protonix - it's some kind of reflux med, but it could help with the nausea also, i think by keeping things no so motile. Take good care, warm hugs
0 -
Patty- so sorry to hear. But, let them take good care of you and get to feeling better.
I don't believe I've ever read if your issues are from your cancer or se of your treatments? You certainly have a rough time!
((Hugs))
0 -
Hello Ladies,
Yes Patty don't let the doctor discourage you I think MJ would be the answer for many of your issues😊. We need to keep you out of the hospital and get some weight on you. Funny when I was younger I dieted all the time now I'm glad of my weight funny things change eh?
So I saw my oncologist yesterday and she finally admitted that I'm most likely on the placebo. Then she went on to say that Ribociclib the drug I'm not getting. Is a new and upcoming very successful breast cancer drug. Apparently some of the first studies were already released and woman are having long term success with it. Many of which are still on the drugs and have been for many years. It's due to be approved very soon the side effects are a lot better than Ibrance of which this is a sister drug too.
Had a bit of a shock yesterday we discussed the options of surgery again since my tumour is shrinking down. She said in Canada I could get a mastectomy however reconstruction would not be paid for because my life expectancy would not warrant the cost. Unless of course I have extended medical. That what free health care is the government decides what your going to get. Kind of a kick in the stomach.😥.
Dee how are you doing?
I wish you all the very best and healing
Wend
0 -
I forgot to mention Kelly Turner the author of radical remission has asked me to be part of her study. She is doing a study on healing cancer now. I hope I'm not jinxing myself here...knock on wood lol..
0 -
Thinking of you sweet Patty.
0 -
hi all,
Wendy, I can't believe they won't do a recon. Have you talked to a PS? They still have to get approval, but all of my recon was covered including all the revisions I had done. I'm doing fine, my counts aren't great, but good enough. I'm not happy that you're not on the drug, but you are doing well, so maybe it's the mm that you're taking.
Patty, I am so sorry you are in hospital again. take care of yourself girl! hugs
I want to say hello to everyone else but I'm running for the ferry, again, today is infusion day. BBL!
cheers, dee
0 -
Wendy, wow you are famous! Wendy that's crazy about thinking you won't enjoy the benefits if you so with, that scares me a lot.. Free Health care, is not free. It comes with a price. Say what you will. A relative of mine had to wait 6 weeks for an MRI in Toronto, Canada. To ensure she gets a knowledgeable surgeon, she paid out of pocket. And so on.
Onco only wants to order Bone scan for painful knee for my daughter. The Pet/CT they are ordering till the tight the same week, does that make sense? She always used to have Full body Pet/Ct, would the bone scan be as accurate in seeing mets. I know that many ladies here only have Bone scan, but for years she was given the other scans. Would it not make sense to just have the PET/CT to the whole body? Who could give me info about that. .
0 -
MomATT, from what I understand, CT + Bone Scan gives you basically the same info as a PET/CT. I'll ask my sister (she's in rad onc research) just to be sure and try to get something more specific for all of us. In the meantime, I know bone scan shows degree of nuclear uptake in areas with mets, and is used to assess tx results based on changes in uptake. Again, it's just so important to have an onc you trust to make these sorts of calls, otherwise you are trying to do and/or control his job, which is way too stressful for you.
Wendy, that's exciting about Kelly Turner! Is she in Canada?
Patty, Patty, Patty -- I am so sorry you're back in the hospital. I had read something recently about a specific type of bug that is very hard to nip and keeps recurring. I thought of you at the time, but had hoped things were finally under control and you were past the rehospitalizations. Let me see if I can possibly find that article, but it's probably doubtful. Also -- on the MM -- in CA it's not our PCP or onc who RX's MM. There are real docs specifically trained in MM, and that's who you see. I know b'cuz my son saw one and got an RX for the killer migraines he sometimes gets. As far as I know, I don't think he ever got the product, but he was impressed with the doc and suggested I see him, which I haven't yet.
Gotta run... Hi to everyone! Deanna
0 -
patty, sorry you're in the hospital.
It was me who mentioned about my MO not expressing his opinion re MJ. In CA a physician has to recommend it and it's not necessary for it to be YOUR doc, you pay a fee ($65 I think) and get a card that's good for 1 year that you can use to purchase MM in a pot shop. I don't mean to be unkind, but the MDs I've met who do this in specific storefronts I wouldn't go to for a headache, it seems like such a scam, possibly state-sponsored. One MD I saw 2 years in a row asked why I was seeking the card and I said stage four cancer. He wrote down a few things, pushed the paper towards me and waved me out the door. The one I saw this year started giving me advice about how I should treat the cancer that was not related to using MM! I just kept my mouth shut and waited for him to sign off, collected my form and left. Will be nice to not have to go through that now thatMJ Is legal recreationally.
Have as good a day as you can.
Love,
Patti
0 -
Dee was your recon done prior to be diagnosed stage four? That's the cut off point
0 -
I'm pretty bummed today. Was supposed to have chemo but due to very low blood counts the y cxled I had asked for Neulasta after my last treatment because counts were low but mo said no.My TMs are going up and I want some form of treatment. Leaving Monday night for Paris to meet dds boyfriends family. Wish I felt better. Will be getting chemo when I return hopefully and scans too! I still think I should get Neulasta soon
Bab
0 -
I hope you feel much better soon, Babs. Hopefully Paris, seeing your daughter, and meeting your future SIL will be wonderful medicine! Be sure to share photos with us!
Patti, sorry you had such negative experiences with MM docs. I certainly wouldn't take advice from someone like the one you described! He sounds kind of creepy. The one my son saw actually gave him a pretty thorough interview and a chart I just found the link for to share here again. Not sure how accurate this is, but here it is.
0 -
Hi Babs,
So sorry you couldn't get chemo but your consolation prize, going to Paris, is wonderful. It's my favorite city in the entire world. I've loved Paris since I was a small child and until a couple of years ago, couldn't understand why. The movie, The Red Balloon hooked me. I recall being completely enthralled by the architecture and beauty of the buildings, sidewalks, streets and bridges.
Patty sorry you're back in the hospital. You can't catch a break dear girl. I hope they can get on top of this and get you home again.
Wendy, wow, that's a kick in the pants! I can't believe it. Seems cruel and heartless.
Hi Deanna, Linda, Patti, momatt and everyone else I may have missed.
I had a scan on Wednesday and the day I hoped would never come, came...cancer continues to spread throughout my bones but also now my liver. Fortunately it's small but still, I always felt that as long as the cancer stayed in my bones, it's a win...now I can't say that anymore. No more Faslodex or Ibrance. I'm taking a break until after DD2 wedding in December and then will decide what to do.
Xeloda, Tamoxofen or Adriamycin are my choices right now. None of which sound very pleasant. I am lucky I have choices as I know a lot of people do not or cannot pay for these choices. I've told my children but am holding off telling my parents as this will be difficult for them. They're dealing with their own medical issues and I don't want to concern them any more than I have to.
If any of you have good news or positive stories about any of these options, I'd love to hear them. Thank you all -
Have a great weekend.
Amy
0 -
babs. Sorry but def glad to hear of your trip. Hoping you have the energy to enjoy.
Amy buggers. Not the news you wanted to hear. X has been very easy for me so far. No hand and foot issues yet. Fingers crossed. Only some mouths sores. My X is pill form, is that what they are offering?
Hugs all
0 -
Amy, I was just thinking of you....and sorry to hear you have progression. Hoping that the wedding will help you focus on something good until you make some new treatment decisions. ( hug)
Moma....My husband had prostate cancer, stage 3B and so far it has not metastasized. He got a PET/CT when first diagnosed and surgeon told him the same thing. They got the cancer ( we hope) and will not do PET/CT or bone unless symptoms arise etc. It's not reassuring that's for sure, but I believe it is the general protocol. We had a second opinion at Mayo and the consensus was the same. My dh's next PSA is in a few weeks.
Babs, So sorry you could not get Neulasta especially before a trip. How frustrating. I hope all goes well for you and that you are able to enjoy Paris.
Hi to all I've missed......Patty, hoping you can go home. Have they checked for C.diff?
0 -
chevking for cdiff in lab now
0 -
oh Babs, I'm sorry. Hang in there. Safe travels
Love,
Patti
0 -
Hi all,
Just checking in... I've missed pages and pages (months) of BCO this time and am trying madly to catch up.
AmyQ - I have experience with Adriamycin. My journey has been a little different than most, I think... when I was diagnosed Stage IV in 2012 the cancer was extremely wide spread in my bones, and I had two small spots on my liver. I was literally put straight into the hospital for three weeks of emergent radiation, followed (one week after I was done, even though my white blood cell count was low low low) by 6 rounds of chemo, which included Adriamycin. I was hospitalized twice during that time, lost 20 pounds, couldn't walk, etc etc... BUT, the chemo did the trick for the time being. I've been NED since June of 2013, which is a miracle considering the way my bone scans used to light up. So while it was an absolutely horrible experience, I am grateful that it did it's job. I've been on Herceptin since then as I am HER2+. Of course, I am not sure what will happen if (when) the cancer comes back/spreads again... but for the time being I really feel ALMOST "normal" and am ALMOST as active as I used to be. I hope that helps.
XO
Andi
0 -
hi all!
Wendy, no my recon was prior to Stage IV, but I would still ask for a consult as so much has changed in the world of cancer in 5 years. We are no longer a "2-3 year stat"
Babs, sorry to hear you didn't get your chemo, but maybe? a blessing in disguise with your trip planned. I hope your numbers rebound. Have a wonderful time!!
Amy, I did really well on tamoxifen for 5 years. Had very few SE's once I found the right maker for me, it was a battle for a few months til I did but then it was smooth sailing.
Patty, did they get the results from the c.diff testing yet? I really want to see this bug of yours be gone forever.
I just got back from pamidronate, so I must get some rest. take care to all of you, hugs, cheers, dee
0 -
Dee I godon't it from the horses mouth both my study nurse and my oncologist said they don't do reconstruction on stage four woman unless you have extended medical. It's all mute anyway I wouldn't get surgery anyway no point for me.
Deanna no Dr Turner is in California they want me to submit my protocol and story to them on line .
0 -
Amy - We all dread that day. I'm really sorry to hear of your progression. Is a liver biopsy planned?
Babs - I love Paris! Enjoy and come back in top shape for your chemo.
Patty - I'm hoping they find whatever bug is causing this. It's been going on for too long.
0 -
Wendy3,
For what it's worth, I wish I had not gone through reconstruction and I'm seriously thinking of undoing it.
They are uncomfortable and do not look natural. I would love to be flat and more comfortable now.
0 -
Amy,
I have no mets to liver, only to bones but I must say that I always, every night I think to myself exactly that what you wright: "I always felt that as long as the cancer stayed in my bones, it's a win...now I can't say that anymore". I wait and afraid the time, when I could say "now, I can't say that anymore".
Do you heard about thermoablation - destruction tumor with extreme temperatures (radiofrequency (RF) ablation, microwave (MW) ablation and laser-induced thermotherapy (LITT))? I think is another, next to Adriamycin, TAM or Xeloda choice to you. I read that microwave ablation is the newest, most save and most effective. Anybody heard sth about this treatment?
sorry for my english,
Hugs to all, girls!
0 -
bummer. C diff positive. Moving to isolation room. Nurses and visitors wear gloves, mask and gowns. Something from alien show. Grr more days here
0 -
So sorry, Patty. You will get better!!
0 -
Oh Patty I was so afraid it might be that. Ok....now to get you better....they will have the right strong antibiotics to beat it. So sorry you are going through this. We are here for you.
0 -
Patty that sucks but now they know how to treat you. Hoping for a speedy recovery!
Babs
0 -
Patty, sorry to hear about the C diff + but at least they can now treat it. I got it when they sent me to the hospital (didn't have it before then) make sure they don't use a blood pressure cuff or anything else from the rest of the hospital, you need to be in reverse isolation.
But if I can give you one recommendation, after the anti biotics they give you, your gut flora will take a huge hit & you need to get that back. Probiotics will be your friends, get your gut back in shape asap. hugs, dee
0 -
thanks for the info. Yes they moved me to an isolation room. Started antibiotic an hour ago. Wondering if I'll have to stay a few days or can I just take the antibiotic at home ? Nurse said will have to ask dr tomorrow.
0 -
So sorry, Patty. I suspect you've had that all along. Hopefully now they can knock it out once and for all. You deserve to feel good without the fear of a relapse always hanging over you.
Amy, I've been at a loss for words, except to say, there are women who are doing well with liver mets 5 and more years out. It seems like the key is getting on top of them quickly, which you are. You are uppermost in my prayers!
Beatrix, your English is excellent -- much better than our collective Polish, I bet. And I agree about asking about ablation. Have you had it?
0
