Bone Mets Thread

Delvzy

has anyone tried the chemo tabkets

chef47

wow Lori, what an encouragement! Thank you so much! Lots of good info. I just took one week off and I will go back to it next week. I’m going to hon read and reread your post and let it sink in some more, but it is very encouraging:)

BigPeaches

Delvzy, I think I'm about to, my Onc mentioned it at my last appointment. I don't know much about it as far as side effects, worse or less. I'm hoping for less of course.

Frisky

Finally some good news! Although clinical trials have not started yet!

Cancer Cells Put to Sleep Permanently With New Drug

And without the harmful side effects of radiation. Read the full story

On another note, here's a sobering perspective on what we can expect from the therapies that are available

Taking A Wider View Of Precision Oncology
Forbes Magazine

In certain instances molecular profiles of tumors appear to be a necessary but insufficient condition for the success of targeted therapies. Precision medicine may need to be supplemented with clinically useful data outside of the narrow lens of genetic mutations. Read the full story

Lita57

I was on Xeloda (Capecitabine) pills for a little over a year. Knocked back the liver mets, but the bone mets still progressed and I had to move to Taxol, then Gemzar IV chemo.

Xeloda pills did cause a lot of "fun" diarrhea, however, and you have to time them carefully (am and PM dosages with meals). Also have to put up w/nasty hand/foot problems. Use LOTS of hand cream (lotion is NOT strong enuf), and wear socks and gloves to protect tender, peeling skin. Now my hands/feet are fine, but it takes a while for it to go away after you go off the pills.

Good luck, L

marylark

10 days post surgery to place a rod in my tibia. I walked 4/10 of a mile without a walker. It took 20 minutes and I am exhausted but I did it. Lying around has done a number on my head. I'm so glad to take a few steps.that defy cancer.

Mary

chef47

wow Mary!!!! That is awesome! Do you like to play games on your phone? Some of them keep your mind sharp. They definitely make time go right by! Maybe too much! Lol so glad you’re up and walking already

Lynne

Delvzy-I was on Xeloda (chemo pill) for 2 1/2 years, before it stopped working. I did have to lower the dosage because I could barely walk on my feet (hand foot syndrome) right in the beginning. I did have foot and hand peeling for the first 6 months, but then it gradually got better. I took (and still take) 100 mg of B6. It helped a lot. I used udderly smooth right after my shower, and put on socks and cotton gloves, until it was all absorbed. I did then same in the evening.

Lita-How was it on Gemzar. That is currently one of my choices, as I need to change treatments again, for the 6th time. I am heading to Dana-Farber in Boston this afternoon, for a second opinion on which treatment she suggests. My primary suggested Gemzar and another one that is once a month, but has tons of side effects.

marylark-Great job! Enjoy your rest!

Hugs to all!

Lynne

MuddlingThrough

Good for you Marylark! Keep moving forward in a gentle way. I used to walk 3, 4, or 5 miles a day at a snappy pace. Now, I "house walk" for 20 minutes a day most days, and at a slow pace but it's my protest against the limitations.

Iwrite

Spent the morning holding a new granddaughter. Juniper arrived last night and weighs 5 lbs 14 oz. My DD and SIL are on cloud nine Soglad I am able to be here for her and get to meet this beautiful baby.

chef47

wow Iwrite! What a blessing! Congratulations!!! Babies are the best gift in this world.

Vilma65

Hi I haven't been posting here much, and up to recently was just checking the liver mets forum but I need some input and will appreciate any suggestions or experiences that you have. I have a met in my left femur at the top (in the connection with the hip bone) my MO sent me to an orthopedic surgeon to see if I need to have a rod put in. The orthopedic surgeon said that I have to make the decision whether I want the surgery or not. He said that there is a risk of a fracture (then the surgery will be more serious than if it was just inserting a rod) but the risk at this moment is only 25-30%. (he said "only", it seems like pretty high to me) . The thing is that I have no pain at all, I feel good and my treatment , Ibrance and letrozol, seem to be having positive results. The surgeon said that he would recommend the surgery if I would be super anxious and unable to function, worrying about a fracture, which I don't think I will be. I said no for the moment but I have a follow up appointment in 6 weeks and unsure what to do. I know that with my diagnosis it is impossible to know for how long i will be feeling good, healthy and pain free and having a surgery feels like risking it. Thank you and sorry for the long post

Vilma65

Congratulations Iwrite, that's so exciting!!

chef47

hi vilma65! Sorry about your femur met. I had a proximal femur replacement due to impending fracture from a large area of mets. So I have a titanium rod with a ball at the hip joint. Would you be getting the “ball” hip part too? Or just the femur rod? I ask because the super duper crazy hip replacement on steroids(what the surgeon called it) involves the big hip joint and that’s a tough surgery. I will give you details about that if it is. If it’s just the femur I don’t know how that would be but I assume it would be easier? Maybe? I personally think waiting till next appt and seeing how you are is a good option. I had pain going in and still have pain 6 months out of surgery but I have widespread bone mets too.

MuddlingThrough

Iwrite, congratulations on the new grandbaby! That's just wonderful!

Lynnwood1960

I write, congratulations on your new grand baby!!!

Vilma65

Hi Chef47, thank you so much for answering. I feel really silly, planned to make many questions and at the doc I forgot what to ask. I went there thinking that I will be told if surgery or not, didn't take into account the possibility that there is no clear recommendation. As far as I know he was talking about inserting a rod, not the ball hip part, but I didn't even ask about the kind of surgery, was just focusing on if I will need it or not. I will make sure to go more prepared next time, not having asked the qustions makes it so much more difficult to make a decision

janky

Vilma65 - Maybe you can get a copy of his report and go over it with a Nurse Practitioner or your GP? I generally get my reports copied, then figure out questions to ask about...Best of luck in your decision (Decision making sure gets tedious after a while)! Janky

Vilma65

Thank you Janky, that's a good idea. I will ask next time that I see my MO. I need to educate myself, I feel that at the moment I have no tools to make an informed decision

Lynne

Congrats on your new granddaughter, Iwrite! They are blessings for sure!

Lynne

Lita57

Lynne, 4 me, Gemzar is easier than Taxol.

L

marylark

Congratulations Kathryn (Iwrite)!

PHOTOGIRL-62

Iwrite, Congratulations on your new grand baby. That is wonderful news for you. I’ve been off the threads with so many issues, but I was wondering if you have heard from Claire and Babs. I haven’t seen them. Today I heard about Robin. So awful to hear this. I’m struggling myself right now, hope I get sorted out. Enjoy that baby!

Hugs to all.

Anita

AnimalCrackers

I write - congratulations on the grand baby!!! Nothing brings more joy

Lynne

Thanks Lita!

Lynne

Larkin

Lynne, I just found out my bone mets are spreading on Navelbine and will be switching to Gemzar in a few weeks too. My doctor and chemo nurse said it’s not too bad side effect wise, might tank blood counts and takes about 30 minutes to administer. I’ll be watching to see what your second opinion says. - Larki

Vilma65

Hi, I posted yesterday and only got a few answers, I think that my post may have been a bit confusing. I hope to get some input into getting a a metal rod inserted in my femur to avoid a fracture from women who had a similar surgery. How was the recovery like? is it a hard surgery? do you have pain in the surgery site? any input will be appreciated.

Also, if you refused surgery, did you have a fracture, how bad it can be? etc. etc.

Sadiesservant

Hi Anita,

I am not sure about Babs but I heard from Claire about a week ago (sorry, off work this week so losing track of the days). She has been very ill with a second stent required for her liver. They drained 7 litres of fluid off of her belly. She was just starting round 4 of Xeloda and has started experiencing issues with HFS. I’m praying Madame X will do her thing and she will be back on the boards soon.

Sorry to hear you are struggling as well. I’m off to have rads today to zap the little buggers in my hip. Hip/groin pain was getting old very fast.

Hugs to all. Pat

Kaption

Pat and all,

Claire and I have been emailing. She did have another stent and quite a bit of ascites drainage. Maybe having more this week. She’s not on the boards for now, but we’re keeping in touch.

Iwrite

Hi friends,

Thank you for the good wishes on the new baby. Grandparenting is much easier and that new little one means more than I can say. You all get it!

I PMd Babs a few weeks ago and haven’t heard back. She had posted that she was switching from Halaven to taxol in mid July I think. Sorry that Claire is having such a bad time. Hadn’t heard about Robin.

Stupid cancer .