Bone Mets Thread
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Deanna, Congratulations for the lower TMs, lower is good regardless of how much lower. I am still waiting for my results.
Lynne
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Dune - hope you get some pain relief soon. Chronic pain is just awful.
Myra - looks like the hurricane will miss the US. Fingers crossed. Enjoy that baby!
3/16 - Just horrifying the way the former MO treated Dani. I had the same thing - my original MO had me written off before we even started treatment. So glad you fired her.
Dee - wow! Moving a raised bed is lots of work. Glad you're feeling well enough to do it.
Deanna - always love your fantastic advice.
Annie - hope the two tummy pills and Celebrex works for you.
I got to meet Woody and his step-kittens last night as I had to stop by the Kitten Inn to drop some stuff off. They're too little to handle, but got to pet the momcat (the little fluffy tortie) and look at the babies. She has five of her own; all fluffy and cute, mostly torti or black-ish. But one is black and white with a tiny black spot under his chin. And he's huge. He's like double the size of the others! Too dark to get pictures, so you'll have to trust me on this. Woody has fitted right in and the momcat has taken him on as her own. Just love their little ears. Got to also pet five pregnant moms; they're all about ready to pop. And peeked in on some two day old babies. Hate seeing all these pregnant cats - people really need to spay and neuter. But will admit to having my heart explode a bit when I see the wee babies.
On a less happy note, I have now been diagnosed with diabetes. It's not bad; 50 is the cut-off and my blood sugar was 52. Explains why I've been so exhausted and occasionally dizzy lately. So now I have to monitor my blood sugar four times a day for two weeks. Am not fond of sticking my finger and making it bleed. My eating habits have been atrocious lately and it's bitten me in the bum. So I think it should be easy to control by just cleaning up my act quite a bit. Lesson learned.
Sending hugs to all,
Terre
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Deanna - Congrats on dropping TMs!
NYC - Contrats! Thank you for posting pics of Leah - she's simply adorable.
Dee - I know, I also tried searching on that thread. Leggo and I have advised the Mods - we'll see. There are 2 sites I regularly visit:
cancerview.ca and ClinicalTrials.gov
In fact, I just got off the phone with the site (Ville Marie Medical Centre in Montreal) that offers the MonaLeesa-3 clinical trial (ref NCT02422615). I thought I could qualify but inclusion criteria says progression with only one line of endocrine therapy. I had a mix of Femara and Tamoxifen.
Another interesting trial is the Sandpiper (ref NCT02340221). I started a thread but not much response. I think I would fit in that one but the 2 Montreal locations are no longer recruiting.
The above clinical trials are also available in the US and other countries. Still, I will take them to my Onc on Monday and see what she says.
There's also an interesting trial at the Dana Farber in the US only (ref NCT02448771) using Ibrance + Bazedoxifene. Bazedoxifene is an endocrine therapy, blocking estrogen stimulation. That's also on my list of questions - can it be used alone and what is its efficacy?
edited to remove FDA/Health Canada approval
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Deanna, TM's down is a celebration! So good to hear the Ibrance and Faslodex are doing their job.
Charlotte, Leah is so precious. What a nice gift after all you have been through. You and Myra must be on cloud 9.
Terre, I swear if I lived closer I'd be taking some kittens home. Diabetes? Can you control with diet right now or will you need to start medications? I've been eating a fair amount of chocolate lately. Hmm...guess I can curb that!
Lynne, Hope you get results today.
A good weekend to all.....I'm seeing an old college friend tomorrow which is the best medicine ever.
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NYCchutzpha, Mazel Tov. Too bad our two girls don't live closer. It is an amazing feeling!!!
Terre, please take care of yourself. Diabetes is insidious too.
Linda, thx for all that great trial info.
Love to all, myra
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Wow...how did I miss an entire page? Leah is stunning! What a sweet baby. Made me say Awwwww...
Patty and Bosco - welcome back. Sorry about your hospital time and hoping you both get back on your feet soon.
Deanna - Hooray! -10 is better than +anything.
Lindalou - have fun!
LindaE - cool info on trials. We have like nothing here in NZ. I think I posted a link to a facebook page about the Karen Louisa Foundation; they're trying to get clinical trials into NZ as one of their main missions. People here who want to do trials generally have to have major $$ or do a go fund me page (or similar) to go to Australia or Europe. There's no reason not to have them here that I can see; we have some amazing research and doctors here through the universities in particular. My MO is good at keeping up with things, but I've found info there that was new to him. So thanks!
At this point the diabetes is controllable with diet (we think). I have been eating way too much sugar the past two months. I don't normally crave sugar/sweets, but have been this winter for whatever reason. So, I'm reasonably sure that by cutting out sweets and watching my carbs that I'll have it under control quickly. I don't want shots or pills. So I'm quite determined. Interestingly enough, I've lost 7 kg in 3 months. So I'm back down to the weight I was when I moved to NZ seven years ago. Still have a lot to lose, but at least it hasn't gone up. The only symptom I have from the diabetes is fatigue. No excess thirst, no tingly toes, etc. But this does likely explain why I've been so unbelievably tired the past few months. I was terrified it was the cancer recurring, but my tumour markers are stable, which is great news. And all my other blood work was "perfect". So not all bad news. And compared with what so many of you are dealing with, this is a no big deal thing, and will be fine.
Sending hugs to all,
Terre
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Terre at least you got a good run, you could also ask for the A1C that is a true show of your blood sugar level, most place above 6 they will consider you diabetic, my hubby with no history and a terrific diet had his numbers creep up, so when doc said it was close to 6, i was hoping he would not consider him diabetic, doc told me no such a thing as a little bit pregnant. (A1C runs 3 months back)
Deanna - so happy for you, about time this thing calms down! Her WBC is 1.5 her abs. neutro 1.0, they called she should go on Neupogen which she has at home and she gives it herself, platelets 57. She went to a great and nice ENT for the nose bleeds it was cateurized for now, hope it will hold!! Yes, I mentioned to him about the site you sent me, i gotta ask again on Wednesday, her next appointment.
Pattypeper you are so missed, come home real soon.
Annie , LindaE thanks so much for your warm wishes, trust me i am no saint!!, nights are no nights any more, i get like 3 hrs of good sleep, and the rest I am on my guard,, you would all do the same.
i am always so emotional when i read your posts, so sincere and warm, thanks for all your gentle nudges I had a lot of support.
Bosco it's a gr8 idea, i will def ask if it's something he could give, this business of watching for not too much blood loss it's not easy.
Amy I am so glad you are doing better, and Deanna giving us the news with the tx should give hope.
Hey Charlotte, a big Mazal Tov, so nice for the new life, it brings a smile to all of us.
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Hello. I'm just visiting this thread to see if any of you who have bone mets from lobular breast cancer can give me some input. If you have ILC bone mets, could you tell me what imaging shows them? As we know, ILC can be hard to detect. My upper arm has been hurting for quite a while, but my PET-CT and an arm x-ray show my arm and other bones looking normal. Do I need a bone scan (had one a year ago) or an MRI? Or should I just pursue this with my PCP and look into other causes for my arm pain, such as a muscle problem? It doesn't hurt at rest, but using it in certain ways hurts a lot.
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Shetlandpony Sorry I have no wisdom for you but I hope someone chimes in soon to help you with your pain and worry.
NYCchutzpah: Thank you for sending the beautiful grand baby pictures. She looks right at home. in your arms.
I am wondering if anyone else suffers from random acts of crying. I was complimenting my son at a school meeting and the waterworks just started. and took me by surprise. I guess I let myself think about what I COULD miss. Not helpful thoughts. Any helpful hints would be appreciated.
Before I go dbl so happy tumor markers are down. Patty so great. to see you post. I am really sending positive energy your way
momallthetime Your post is a bit. more hopeful today. I imagine your daughter is more comfortable with the nose bleed treated. Sending both of you positive thoughts.
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Shetland, I have ILC bone mets. Ironically it was pain in my left upper arm that sent me to the doctor. X-ray was negative/normal. Dr convinced it was a rotator cuff injury. Next step MRI which showed the mets. Next step bone scan which showed extensive mets. Next step Pet/ct scan which confirmed mets confined to bone only. My arm hurt all the time, worse at night and I couldn't lay on it without pain. When I reached behind my back one day to scratch it, the pain was severe and that's when I knew I had to get to the doctor. In your case, I would think that the pet/ct scan would pick up mets in your arm. 3-16, I have those crying spells also! No warnings, but will just be moved to tears from a simple everyday moment. This whole cancer thing is rough ....let the tears fall when they need to.
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3-16' I also have bouts of crying. It isn't always from sad thoughts. Sometimes I am just so touched by things and the tears start flowing. It is nice to know that I am not the only one.
Lynne
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Shetland,
Duke does a nuclear medicine bone scan for my ILC bone mets.
Mary
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Charlotte, Leah is beautiful! Thanks for sharing the pictures with us.
Deanna, tm's going down is a good sign that your treatment is working, I'm so happy for you!
Terre, the two tummy pills are working, so far so good!
3-16-2011, I have bouts of crying all the time, sometimes just from looking at a beautiful sunset I think because I realize how much I appreciate the simple things in life.
Hugs to all, Annie
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Hello everyone! it's been a rough week for se's. But I'm back and strong. I can never remember to address everyone as I am writing. But I can assure you that I have been praying for us all and rejoicing for those of us that have had a victory!! The zometa was rough. But heck, it's only every three months. I will LIVE with it. Yesterday was the first day since dx that I felt like my normal self, at least part of the time. I finally feel like I can fight this.
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Congrats Charlotte! Baby Leah is beautiful
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Whoa! Long thread. Just popping in to see.... little Leah is perfect. So happy that you get to meet her. Just precious. One more taxoterrible for me! Yay! I will respond to a few things. I get emotional too. Life is so precious. Especially when people are so nice to me. I just breakdown. Also, the steroids make me super emotional. I take them 3 days during infusion so if you are taking steroids maybe pay attention to if you are more emotional during this time. My DH pointed this out to me and it has really helped. Deanna, so glad your tumor markers are down. It's good news and I'll take it! Patty so glad you are back. Hope you are getting the rest you need to get back to your family. Terre, sorry about the diabetes. That stinks. Seriously, we should get a pass on all other diseases. Why can't the cancer kill the diabetes? Ugh! Hope it's nothing major and you are able to easily manage it. Chelle, so glad you are feeling better. Hugs all around. Sorry for those I missed. Love our Bone Mets sisters. Have a wonderful weekend. Prayers for all of us always. XO
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Charlotte,
Baby Leah is cute as a button. Enjoy every minute with her. Grandchildren grow up even faster than your own children. My granddaughter is already 3 1/2! Good thing I have another on the way. I need some baby snuggles.
A happy, restful weekend to all
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Hi everyone, I too have been struggling w/depression, crying way too much. This whole cancer thing really sucks. Then u add on a precious niece committs suicide at age 21, my uncle dropped dead of heart attack the morning we were traveling to his granddaughter's wedding week-end (very unexpected) & lastly my mom has heart attack in July, which she recovered from. So this past week I got PET Scan that showed marked progression but still only in bones. When I was told I had bone mets 2 1/2 yrs ago, I thought it was a death sentence. My doctor was very positive still. I cried about low back pain, my wonderful RO ordered fentanyl 25mcg/hr patches. They have been a life saver. If I forget to change the patch I feel it. I am allergic to morphine, so I also take oxycodone 10mg for breakthrough pain. The day I was due to have PET scan last week I had terrible pain In left femur, h/a all night & fever. Iwas certain I must of fractured my left femur or hip. But the pain turned around after 24 hrs. Got the scan the following day, both MO & RO called saying I needed to come in on Monday. My head was spinning by end of day Mon. Time to change treatment. Both said I could tell them next day what I wanted. My decision was to do nothing this week. Going out of town tomorrow & will revisit this on Monday. So everyone have good week-end.
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Sue, I'm so sorry about the progression, and the multitude of other family tragedies and illness. Sometimes it just doesn't seem fair that horrible things happen when we're already dealing with mbc. (((Hugs))) to you, and I think you're wise to take a short break to clear your head. I don't recall what tx you've been on that's evidently stopped working, but hopefully the next one will work very fast to get you back to stable or better.
Terre, that's totally crappy news that you now have to worry about diabetes. Hopefully, you can knock it back with much more careful eating. And I guess it's a good think that you have this warning and a chance hopefully to correct whatever is going on before you need meds. But darn... as if you needed one more thing to worry about! So sorry!!! Keep us posted on your progress! Oh, and just a thought... Could any of your meds possibly be a factor? Not that you can do much about it if they are, but it seems like something worth knowing IF a med is possibly contributing to what's going on.
I hope everyone finds something enjoyable to do this first October weekend. DH & I are headed over to my antique spaces (about 85 miles away) to do some work. I'm enlisting his help because there's no way I can do the moving, lifting, hanging, and other physical work I would normally do myself. But it's in beautiful wine country (Temecula), so we'll do some fast work and hope to have enough energy left to enjoy the vineyard surroundings (very much like Tuscany) and maybe lunch or dinner at a winery.
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Linda, thanks for posting that info about trials. The one that I posted a couple of days ago in Vancouver is the most interesting one for myself, but my onc is looking at the Mona Leesa one as well. Is there a thread for trials? Maybe there should be, with all the pertinent info? Mods?
Deanna, lower TM's is good, even a little bit. I have to go & shuffle my mall space as well. I didn't have as good a summer, sales wise as I'd hoped. Oh well... Don't work too hard.
Baby Leah is so adorable, Charlotte, congrats.
Terre, diabetes can be very serious, I hope you are able to get it under control with diet. Fingers crossed that you won't have to be poking your fingers very long!
DH & I were able to move our huge raised bed, nothing that a few well placed 2 x 4's & a couple of crow bars can't remedy.Sue, it sounds like you could use a weekend away. I hope it's for something fun.
Chelle, Just remember, this is the new normal.
Have a good weekend everyone. Cheers, Dee
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dee
Mods have just set up a trials thread - look for New! Metastatic trials search or something similar. Don't know how to link it
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new! Metastatic Breast Cancer trials search
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Deanna, glad to hear the good news of your lower TMs.
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Good Morning All,
Pfizer has initiated a campaign to focus on education about metastatic breast cancer called, Story Half Told. Go to www.storyhalftold.com to see stories, information, resources etc. Holley Kitchen is also one of 5 women that photographers have followed. You will see all the links on that site. Dr. Freda Lewis Hall ( you may have seen her recently talking about breast cancer) is part of that initiative in getting correct information out about metastatic cancer.
Wishing everyone a good weekend with less pain and more joy. Linda
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cjanet- I know what your saying yet I refuse to give in to it. I WILL continue to fight and do ANYTHING I can to extend my years here. I also have a daughter getting married at the end of April and my doctors told me that it is possible I may not be here then. I have had a hard fight since 2010 and I'm glad it has given me that but also need more time. After my brain mets diagnosis my kids thought they had lost me and they say any extra time is a blessing now however I NEED to be at a April 30th wedding. I would feel terrible if my daughter and son had to deal with that just before her wedding. Lets fight together for more time!
This applies to anyone and not just cjanet, lets fight as hard as we can and help each other through it! I refuse to let it take any good days I have left!
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Charlotte your granddaughter is gorgeous , look at the hair beautiful little girl.
This is such a fast moving thread and so many of you know each other for longer that I feel a bit like a gate crasher. I have been following the thread though and I care for each and everyone of you. To address each and everyone of you would be a long post and my memory bites so know that I am thinking of you all throughout my day everyday.
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ok so I feeling much better. Going stir crazy on this hospital bed. A very good sign indeed.
Charlotte - how sweet. Baby Leah is beautiful.
Dlb - yea ! Lower tms are great. Praying that means the falsodex / ibrance combo is working for you. Encouraging to me since we started the new combo tx at almost the same time. How's the pain ?
Trying to stay calm - Fight on ! Love that attitude. Can't wait to see beautiful pics of you and your dd dancing at her April wedding.
Wendy - welcome ! Glad you jumped in and posted. I think you will love our tight bco family. You def are not crashing the gate. I know it seems overwhelming trying to keep up eith everyone but trust me the more you jump in the quicker you'll feel the love also. Course like any family or friends you will naturally be more in tune with some more than others just based on our experiences in crazy cancer land
Hope - are you out there lurking or have I just missed your post ??
Waving hello to all. Hugs all around
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good morning all! Goal for the day made for me by dh.....rest and poo. TMI maybe! I start chemotherapy Mon Carboplatin and abraxane. Once a week for 3 weeks then 1 week off for at least 6 months. I feel the disease digging in deeper so chemo is a good idea . My fentanyl patch is increased b to 75 and this has helped.
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Let me post before I catch up entirely.
I had my MRI results yesterday. The person reading them compared them to April's at first so it looked like progression. When he compared them to JUly's MRI, it looks like no change. But the 2 scans were done on 2 different machines. My onc is reading that as no change and told me this med takes a while if it's going to work. We will give the Ibrance more time. She increased the pain meds: Oxycontin 40 mg three times per day. Hoping that helps a little. My WBCs aren't great but not too bad, so I will start again on the Ibrance likely Monday. I will alternate 75 mg and 100 mg every day and get my WBCs retested and see where they are at. The shots hurt yesterday. My butt is sore today. I am also It's also been raining a lot, which affects my mood and pain levels, and it has gotten a lot colder. I'm lighting candles and trying to stay upbeat but it's hard. It's the season of melancholy.
As for crying, isn't that also due to so many of us being on estrogen blockers? I cry so easily nowadays at every little thing. My onc told me she went to France and prayed at Lourdes, so we all got "high quality" prayers. That made me tear up.
Deanna- yay for lower tumor markers, no matter how little, at least it's going down!
Charlotte- congrats on the new grandbaby, she is precious!
Patty- I'm so so glad to see you here again but bummed you are in the hospital. I hope you are able to get out of there easily and soon!! I am so glad to see you posting.
Terre- sorry to hear about the diabetes but it sounds like with a healthy diet you can whip that into control. But it's one more thing on your plate that you don't need.
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lindalou,
Thanks for posting the link to A a Story Half Told. I read/watched all the stories this morning and I cried. Not from sadness, nor happiness either but for the fact that these women are carrying on as best as they can and even thriving despite MBC. Yes, I know this was produced by Pfizer, and yes, I know they are not the majority of MBC patients, but it validated my feelings and my attitude toward life. One woman mentioned that she knows that she is not typical, and I acknowledge that as well. And one women, Jill Cohen, reminded so very much of my younger sister, who passed away at age 50 after a 4 month battle with uterine cancer. Ms. Cohen was originally from the Bronx, as we were, and my sister's name was also Jill.
I have, sometimes, felt that I wasn't stage IV enough for bco (must have something to do with the expletive laced pm's ), though not from the majority of members. I have a great life, but I do have MBC and I appreciate those who understand this and know I need support as well. Thank you and may everyone have a restful weekend.
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