Bone Mets Thread
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Ohmygosh, Babs, NED?!!!!! And after all you've been through! Wow, I'm so happy and thankful for you!
Good luck today, Dee! I'll be thinking about you and sending happy, positive thoughts that all goes smoothly and that you feel excited about the trial after this appt.
MomATT, the only reason someone has to get off tx would be prior to getting into some trials -- not for a second opinion. Perhaps that was the situation at the time, or the doc's office thought it was -- that you were interested in a specific trial in which they were keenly involved.
Lillymillie, I'm under the impression Abraxane is a wonder drug. I just know that Dr. Slamon @ UCLA was involved in developing it (same doc responsible for Herceptin and also involved w/Ibrance). I believe it's a taxane, but not as harsh as Taxol, and doesn't have as many other chemicals or SEs as Taxotere, so basically an easier drug. And I don't want to confuse you or anyone else about iron-rich foods, but I personally stay away from them since my mbc dx. Of course if you are truly iron deficient, that's a different story, but for many of us, low wbcs are tx-induced and not related to iron deficiency anemia. Also iron and copper have both been linked in research to our disease process and others. Have a wonderful Mediterranean holiday! I love Greece, if that's on your agenda. I haven't been there for years, but I think about it often because everything about the environment is so healing and rejuvenating.
Hindsfeet, Kadcyla is a chemo specifically for Her2+ bc. Because you're Her2+, it should work where others possibly haven't. As far as what it can do for you, I think that's so much an individual thing. Yes, radiation can make it more difficult for bone marrow to do its job, but how difficult would depend on how much you've had, where you've had it, and just how your body responds and rebuilds in view of everything it's going through.
Hi to everyone else today!
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MomATT: I see Angie DeMichele at Penn. She is wonderful. I hug her before and after every appointment. She's also the head of their BC research program. I adore her. And I'm not just saying that because she is literally saving my life, but she's doing that, too.
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Hi Lilliymillie,
The changes I've made have remained pretty much the same with a few weeks since my diagnosis. No sugar, no red meat, and little to no dairy. I drink Chaga tea every morning and eat a lot of t of turmeric . Lots and lots of excerise very important. Hope that helps.
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Woohoo, Babs! So happy to hear about your NED!
LilyMillie, I'm sorry to hear about your results. Hopefully the next treatment will wipe it out. Many hugs.
Bluefrog, I love your new avatar pic. You look so happy and summery!
Hugs to everyone else, too. I can't thank you enough for everything you share here, good and bad, and don't know how I would navigate all this without you!
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Very pretty avatars, Bluefrog and Lovelife! You both look great! Hope I haven't missed any other new ones -- not intentional if I may have!
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Thanks everyone!!!!! Blue frog & lovelife- love the new avatars.
Momall-Xeloda is not easy. My HFs has been hard. Plus I get chalazions, constant runny noses and thankfully only occasionally stomach issues. I'm lucky that I don't have the major BM issues!!!! But with the results I've gotten I can deal. I've asked the MO for an extra week off to recoup-waiting for an answer!
Babs
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Babs, I'm ecstatic to hear your good news! Wow NED!!! Please celebrate and do something really special, I know Xeloda is not easy. I hope you stay with NED forever.
Dee, best of luck, sending all my positive mojo your way. Let us know how it went.
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So happy for you Babs and loving the new photos friends. Sending all good thoughts too. Just back from a couple of days in Ojai and lots to catch up on. Just jumping on to say hi! Starting rads on Tuesday of my breast area
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Horray Babs!!! 💃🏽👯 Happy dancers for you. I hope to be in the same place one day.
Dee- hoping you are getting good clinical trial news as I type.
MomATT- I just switched to Faslodex last Thursday. Injections were fine, considering everything else we've been through, I think it isn't bad at all. My BS told me today not to panic if my TM's go up, or scans are crazy in September. It seems the Faslodex aggravates the cancer before killing them! Since previous AI's didn't prevent metastasis and letrozole is an AI, my MOdecided to switch. Faslodex acts the same as tamoxifen for ER+ cancers
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Babs and lynnwood - great news about both being NED. That definitely deserves a special treat and celebration.
Dean a thanks for the detailed information. I like the word wonder drug, let's hope it can sort me out! That doctor has done some amazing things in his career!
Wendy - I pretty much follow that but very rarely use tumeric. Will have to use some more and up my excerise. Had to Google chaga tea. Never heard of it but will maybe give it a go. I drink buckets of green tea.
Dee - hope you got good news about your trial.
Linda- fingers crossed you'll get on that trial too
Jen- good luck with your rads. Use lashings of aqueous cream (they gave me some there) to keep the area moisturised after treatment. it can get a bit hot and sunburned and crept up on you if you don't take care.
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Thank you all. I pray that each and everyone of us reaches NED no matter what treatment they're on. Wouldnt that just be the best thing ever!?!?
Jen good luck on rads. Listen to Lillymillie about lathering up from day 1. It will make a difference!
Babs
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Lynnwood and Babs, Such great news! So happy for both of you!!!
Has anyone heard from Patty?
momall, check out the Faslodex thread. It will spell out exactly how the shots should be given and what you can do or ask for. Many of us have been on it for years. Best to you and Dani.
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Babs and lynwood,
Congrats on the good news,
Too much to keep up with, but wishing everyone a good summer that is as pain free and relaxing as possible.
Caryn
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Hi all!
Very, very long day today. Lots of labs, full medical history, EKG, appt with trial Dr & trial RN. They want to change my AI to Letrozole. I was on it once & had horrible SE's. Dr says she will put me on name brand which her patients find give the least SE's. Whatever dosage of Ibrance you start on, firstly you will know which you're on, secondly, if you're having SE's they will change the dosage to either 100mg or 75. If I don't do well on the trial, I can go back to anastrozole. The MO will be giving me prescriptions to all drugs to counteract any known SE's before I leave the office, so no trips back to Vancouver just for that. I will have to travel every 2 weeks for the first 2 months, if I am doing well, I can change to every 28 days.
That's about all I know at this point. They will let me know on the 11th, but I have to be over there at 9am on the 12th, so will have to travel even if I am turned down. They don't believe I will be.
Congrats to Lynnwood & Babs! woohoo! Lindalou, I PM'd Patty a few days ago & haven't heard anything. I wish she'd left a phone number on her contacts. We have an impending mail strike, otherwise I would send her a card.
I'm off to bed, sssoooooo very tired tonight, cheers, dee
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Babs and Lynnewood I am so happy for you both and yes Babs that would be the best thing ever if we all reached NED. Enjoy your victory and celebrate💐🍾🎂💐
Love all the new avatars you guys look great.
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Lynwood - Yay to you too!
Dee - Thanks for the update. Looks like your chances are pretty good! Monthly travelling sounds better. I've been on the original Femara brand for the last 2 months. SEs have been a walk in the park.
I heard from Patty last week or the week before. She's still having a lot of pain and trying different pain meds. She also fell and hurt her knee badly, but fortunately no fracture.
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Thanks for that info Linda. I was so scared because Letrozole was so bad last time. If you talk to Patty, please give her my best. I'm so sad that she's having such a hard time.
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Babs and Lynnwood - Great News! So happy for you both!!! Hearing NED on the thread is exciting news!
Dee - Looks like the plan is coming together for you. Safe travels and wishing you years of success on this combo with few SEs!
Jen - fingers crossed that treatments go well! Looks like your team has it together.
Momalltt- Thinking of you and Dani...what a roller coaster...
Had the MRI of the lower spine last week due to ongoing discomfort and looked at the pix on the CD. Lesions all over the place with bulgy discs and some narrowing of nerve pathways. MO says these tumors are the ones that have been healing. One picture had black dots all over the white soft tissue and I've asked my Kellogg folks to recheck the scan to make sure things are ok.
I've been "in my head" way too much over this because of weird sensations...headaches when I wake up, trouble swallowing, some radiating pain that is sort of like sciatica, and weird pelvic stuff...heaven knows it isn't coming from estrogen. When I read the LM thread it sounds familiar.
So the question is...do I continue to obsess or return to denial until otherwise informed? Whatever is happening, it doesn't show on the BTs or CTs and I can continue to have a life with it. For now, denial seems like a good approach.
Hope the week is going well for folks and that we can all get outside and absorb some oxygen :-) Take care of yourselves!
"Just keep swimming."
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Dee Glad to hear you're most likely in the study and hoping it kicks your cancers tush!
Lynne thanks for the patty update. Send her a hug from me!
Kathryn since nothing is presenting in BT or CTs go on and enjoy your life and get out of your head!!! We all need to make the most we can out of life!
Momstt any news on the 2 nd opinion for Dani. Sending hugs!!!
Babs
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Hi all!
Home for one day & we're off again. This time down to Victoria for a CT scan. This is part of the trial, but I'm still hoping for good news.
Kathryn, like Babs says, get out there & enjoy life. Sometimes it's hard to get out of your head, especially if you feel like something isn't right, but I had tumor flares & you're sure something's wrong, but it's bone healing. I go with denial!
Thanks Babs!
take care all! cheers, dee
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hello all, I thought I had posted here before, but I guess not. I have been reading & what a supportive group you are. A few of the ladies I "know" through the liver thread.
I have Pattys address. When she was very ill last year, she gave it to me. She also gave me permission to give it out. As most of you know, she is a huge Peanuts fan, especially Peppermint Patty. If you would like to send her a card PM me.
Blue frog, thanks for the response on my compression fracture. I see the surgeon in 3 weeks.
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Hi ladies, I am going to try lowering my Xeloda dosage and see if that helps with side effects. I left a message with my onc about it.
I hope everyone has a wonderful 4th. My sister is coming for a short visit on July 3rd and plans to leave on July 5th or 6th (I'm hoping the 6th).
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Cristina- enjoy your visit with your sister. I'm sure you're happy to be spending time with her!!!
Babs
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Hi All,
I know this has nothing to do with bone mets, however, I'm so frustrated and I want to ask if anyone else has a suggestion or has struggled with this. For three years now, actually my final chemo anniversary is 7/3/13 - I have been losing the same two toe nails on both feet about every six months - granted in the whole scheme of things, this is rather minor, however I've started to lose other nails too. Just recently the nail next to my baby toe has lifted and will drop soon. This time it hurts - it's never hurt before but this does. Again, I know this is a minor SE, if it's a SE at all, but its very annoying and now painful.
Thoughts suggestions?
PS I do not have a fungus - that has been ruled out. It must be a SE of Taxotere but for it to continue to occur...I just don't know.
Thanks anyway -
Amy
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Amy- I don't have that happening... but sounds like it was something do with past chemo. Happy 4th hope the wedding plan is going great!!
Carol
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Hi all!
Amy, I don't have any suggestions, but wondered if you have neuropathy & if nerve damage is causing this? I lost all my fingernails at the time, but nothing like this. I had to wrap all my fingers in bandaids because of the pain, then had to be careful as I didn't have that protection of the nail.
Had my CT scan yesterday was an entire cluster***k. (sorry for the language, but sometimes that word is the only one that can describe the day) We left the house at 8am. Drove down to the hospital 3 hours away, waited for them to take me, then they said they couldn't use my port & would have to reschedule for next week. I had told them when they booked it that I had a port. Anyway, I said I couldn't be rescheduled next week that I had other scans, so she called around & got me into another hospital.
We went there, they took me in quite quickly but the RN who accessed me was quite bitchy about it. Then we headed home through the horrific holiday weekend traffic. Part way home traffic was at a standstill because a bunch of guys decided to have a fist fight in the middle of the hwy in the fast lane. I was on the phone to 911, they kept telling me to lock my doors, well that doesn't do any good in a convertible. Eventually we got to the ferry, there was a 2 sailing wait and it was already 40 minutes late. So I pulled out my fancy letter which they said they had never heard of, but after much conversation they did get us on the next ferry, but we felt bad "sneaking" into line. We got home around 8pm & fell into bed shortly after that. It's been a long, long week.
Don't know when I'll get those results but they're doing another bone scan on Tuesday.
Happy Canada day to all of us & Happy 4th of July to all our US neighbors (see that, I spelled it the US way!
cheers, dee
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Amy, yes, lifting nails are a SE of Taxotere, and there are two things you can do. For the nail(s) that are lifting, use wig tape (the easiest tape to get off gently) to carefully tape them down and hope they will hold. Are you still getting Taxotere? If so, ice all your nails during your infusions. You don't need Taxotere in your fingertips and toes. You can either use ice, or what works really great are a couple of bags of frozen veggies (like peas) that you can shuffle between your hands and feet to keep the nail beds cold to prevent the damage. The bags of frozen veggies work better than ice b'cuz they don't turn into water, so aren't nearly as messy as melting ice is. I did it when I had TC back in 2008, and it worked great.
(((Dee))), gosh -- what a horrible day!!! I hope your future trips go much smoother! Why couldn't hospital #1 use your port?
PS ~ Just looked at your tx hx, and now wondering if Taxotere did some permanent damage to your nail beds that Ibrance is aggravating, since it also works on fast growing cells (like nails), even though it's mechanism is targeted specifically at CDK4/6. Or, you are just super sensitive in that area to Ibrance. So maybe some frequent icing of your nails would still be helpful? (Sorry if I misunderstood your post at first. Looks like you meant you finished Taxotere 3 years ago???)
PPS ~ Since permanent hair loss has now been admitted as a previously undisclosed potential SE of Taxotere, perhaps damage to nail beds is a similar lingering SE for some??? You might want to start a new thread on the topic and see if anyone else is dealing with this effect years after getting Taxotere. Might be some legal recourse, as that kind of info should not be hidden from us!
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OMG Dee what a nightmare! You can't catch a break! Don't feel bad for "sneaking" into line. You are dealing with enough. Most people recognize that when people are granted access ahead of others it is usually because of a health issue.
AmyQ - I don't think losing your toe nails is a minor SE. Sounds painful to boot! I can't offer you any advice on that but as usual Deanna comes through! We're so lucky to have a support system like this. Some of these ladies are just amazing with the knowledge and experiences they have to share.
Cathy
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Cathy- Deanna is my life line... LOVE HER!!!
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Carol - yes I read everything Deanna writes. She's terrific!
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