Bone Mets Thread
Comments
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Caryn - I think that I can safely say that everyone on this thread, including me, would like to like to someday be the same status that you are - NED. We would still be stage iv, just as you are. That shadow will always be right beside us. I am always happy to see your comments here. You give me hope.
Cjanet- I am very happy to hear that you have no progression and that you will continue with current tx. I hope the new pain meds help you. You are in my thoughts and prayers.
Patty - I hope you are home soon and that you feel better. As you have discovered, many, many people are pulling for you.
Terre - I hope a change and diet (and I have heard that exercise can help) takes care of your diabetes. I have to say that the crappy sugary, carb-filled diet is a lot more fun than the healthy, low car, low fat, veggie and fruit rich route that we are all supposed to follow.
Hope everyone has a good weekend.
Lynne
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Lindalou - Thank you for posting that link. It sure is good to see some "awareness" of MBC. Wonderful ladies sharing their experiences. However, at the risk of being a downer, a lot of emphasis was put on how they carry on with their lives (work, hobbies etc.) but not much on the many challenges MBC patients face (pain, constant tx, surgeries etc.) along this journey. Of course we can live full and productive lives but the dark side of the disease is absent. Good publicity/marketing for Pfizer. I wonder what they are doing to promote approval of Ibrance in countries other than the US.
Terre - bugger on diabetes! Hope things turn around quickly by changing diet habits.
Cristina and Patty - happy to hear your good news!
Try2staycalm - You truly are an inspiration to me.
HopeFaithCourage - Literally cracked up when I read your post. Hoping Brownsville is just around the corner!
Can't flip back and can't remember who has to change tx and make a decision after the week-end. Sorry but praying your next tx is gentle on you and mean on cancer cells.
Wishing everybody a good week-end!
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LindaE, I agree that there should have been more on the challenges of MBC. I did like however, the page that lists the percentages and misconceptions of the public on what they thought MBC is. At least it's a start in getting people educated. Many of my friends still don't understand. Fortunately, all of you wonderful ladies do.
I'm starting a Fentanyl patch this weekend. Is constipation as bad as taking an oral med? I assume it may be.
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Bosco, I knew about the new trials page, but when I input the info, it only comes up with Trials in the US. There are currently 3 trials available in my area that don't show up, I guess because I'm in Canada, I'm sure there must in trials in the UK as well. I'm hoping that we can get a thread that shows all trials with start & end dates.
Linda, I agree with the "happy, happy, living with MBC, not a problem" I don't want sympathy, but once in a while it would be nice for some to remember that I can't do some of the things I've always done. I sometimes need to go home early because I'm tired or my back aches. A friend wanted my DH & I to rearrange her living room furniture for her because "we're so much better at it than she is!" Um, I can't be lifting furniture anymore. Others wanted us to come to a performance on Friday night after my infusion & didn't "get" that I can't do that anymore.
Cristina, ((hugs)) HFC, good luck!
Wendy, not a gate crasher, but sometimes takes a while to get in the conversation, it's not that I'm ignoring you, but if I'm on my tablet, I can't go back & see who wrote what. Patty, you get out of that damn hospital bed!! Hope everyone has a good weekend, it a beautiful day here, back out to the garden I go! Cheers, Dee
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I hope that everyone who watches the Pfizer piece realizes that these are just snippets of some people's lives, and not a comprehensive look at all MBC patients. Remember, one of the women clearly states that she is not typical. Like so much else about bc, MBC is a broad spectrum which includes many different treatments, disease subtypes and effects our lives to varying degrees. The great commonality is that it will be the cause of death for almost all of us.0
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I just returned home after spending the entire day in the ER then ICU with my husband. It turns out that he has a blood clot in each of his lungs. He has no known risk factors and looks and feels great. We started out on our walk this morning and he suddenly felt light-headed and short of breath and his heart was racing. We sat down and all symptoms disappeared in a few minutes. We thought maybe it was from a medication he just began for acid reflux, and I made him call his pcp. Pcp told him to go to er. Dr there said he was very, very,lucky. I must say that DH looks and feels great, and I have thanked God for alerting us to the issue in time. Hopefully, dh will be transferred to regular room tomorrow and be discharged on Monday. My son told me that my DH and I have to go back to work since we have both gone downhill since we retired. This is our first year of retirement, and it has been a doozy so far.
Thank you for listening. Here come the tears. Ugh!
Lynne
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Oh Lynne, so sorry to hear about your husband! Thank God you made him call his doctor and thank God his doctor did not brush him off! Your husband will most likely be on blood thinning medication now. Let those tears come...you have been through something very scary and I know your mind must be thinking about the "what ifs". But God is good and all will be well with your husband and hopefully he will be home soon. Get some rest, you must be exhausted
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Lynne - how terrifying! Glad he's getting the care he needs. Sending hugs
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Lynne that is so frightening! I'm glad you were so on top of things and called the PCP. Wow, you really need to get some rest and have some calmness in your life now. Hoping he's discharged soon
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Lynne, I am so sorry you had such a frightening experience and your husband recovers quickly. The same happened to me 4 years ago, but since I had been in such good shape I did not pay attention. Next thing you know I was in ICU for 5 days on Heparin. Good luck you guys, just follow doctors orders. Myra.
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It stole my reply again. Grrrrr.
I'm glad to read of the good news from Myra, Chelle, Charlotte, Deanna, and Patty.
Terre, I have to change my diet, too. I eat way too much high glycemic index food. I'm sure the cancer cells are loving that.
Patty, I am glad to hear from you -- and to hear you are ready to get out of that hospital. Oh yeah. YAY! Tonight, I had burning urination. I have never had a UTI, so I'm not sure how that might feel. I hope it is something they can fix on an outpatient basis.
Try2staycalm - Well done! I admire your strength of attitude, and I look forward to pictures from the wedding.
HopeFaithCourage - We certainly are all LIVING with mbc. I'm glad you are adjusting to the "new normal" so gracefully! And with strength of purpose!
Charlotte, I know you will enjoy Leah. Congratulations!!!!
Wendy, hi. And welcome. We're glad you posted and are joining our family. Best wishes go out to you.
Deanna, I would love to have my TMs drop by 10. I think mine went up by 16. So, congratulations on getting such good news. It sounds like a reason to celebrate. What are you doing to celebrate?
Sue, I sure am sorry about the progression. Hopefully the next drug will work well and for a long time, with minimal side effects. Is that asking too much?
I, too, would love to know about fentanyl patches and constipation if anyone has input on that.
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Lynne, what a fright, hopefully DH will be home with you soon.
Exbrnxgirl, We all know that the video doesn't show the real MBC picture, but others will watch this & think that is all there is to it.
Dune! Good to see you here, hope you don't really need those fentanyl patches. ((hugs)) Dee
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Lynne was so sorry to read of your husband lung clots. Sounds like you all made the right decisions at the right times and he will be on the mend. Thank goodness
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Dear Lynne, I was so sorry to read about your husband. Wishing him a very speedy recovery and back home with you soon. Thinking of you.
Valerie
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dune - uti is usually not a big deal. Darn weakened immune system won't let oral antibiotic work. I slways end up getting iv antibiotic when needed. Hope you ding have an uti
Dee- yes mam. I am getting out of this hospital bed today woohoo
Lynne - how very scary what happened with your dh Hope they disolve those clots.
Hugs all around.
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Sue2009, I'm so sorry to hear that you're going through such a rough time right now but I'm praying for better days ahead. Wishing you the best with your new treatment.
Terre, my sister just found out she's borderline diabetic as well and quite stressed about it. The doctor said that a diet change can get everything back to normal, praying the same for you.
Patty, if you're going stir crazy in that hospital bed then it's time to get out! Can't tell you how wonderful it is to see you here again.
Dee, how many more radiation treatments do you have? I hope your pain is improving.
Cristina, no change is good! Try to stay upbeat and positive, sending hugs your way! This cold damp weather definitely doesn't help!
Wendy, you're definitely not a gate crasher, we love having you join us here.
Dune, hoping it's not a uti, they're no fun for sure. I am prone to them with my MS and had one once for 6 months straight, it was awful. Had to be on a daily antibiotic which caused a whole bunch of other problems. Make sure you drink alot and if you have access to corn silk tea it is magical for uti's.
Lynne, how terrifying! I'm so glad you went to the ER right away and he's being taken care of. Prayers for you both and hoping he's home on Monday.
Hugs to all of you and hoping for a pain free and relaxing Sunday!
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I may be quite wrong, but I give others more credit. I think/hope that most intelligent people will realize that there is more to this, or any story, than what can be shown in a short video clip or brief article.
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Happy Sunday all,
Lynne - that must have been frightening. Thank God you had the reflex of calling PCP. Speedy recovery to hubby.
Patty - Yay for going home. But you take it easy girl.
Deanna - hope you had a nice day and dinner.
Dune - I started making my "winter" soups again. Vegetables and cabbage. Whoo - so good for transit.
Tomorrow is result day at Onc's. Have to keep busy today.
Hugs to all - newbies and oldies!
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dune
I used to suffer from frequent Utis due to kidney stones. Hydration of course is important but I also took. Probiotic called Yakult and drank canberry juice. Cranberry isn't recommended with some drugs so might want to check w onc.
Lynne - great instincts to call the doc. Glad your husband is on the mend. Hugs to all
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cjanet as one of the ladies in my support group always says 80% is attitude You will get to your daughter's wedding (just try to see if you can get a quiet spot to rest during the reception, I used the bride's room at my daughter's wedding) The best part of the wedding for me were the preperations. Going with her to pick the gown,meeting the in-laws, the bridal shower etc. So much going on with everyone.Hang in there.
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Good morning all!!
Patty, good for you, get out of that damn hospital!!
Linda, fingers crossed for your appt tomorrow.
Annie, I'm going to have two more rads, one on my rib which was the original pain that I've been enduring for about 3 years & they ignored, said it wasn't anything, but turned out to be a met. And my right hip, which isn't terrribly painful most of the time, but they are going to do it anyway. So then the only met that hasn't been done is the sternum which hasn't bothered me at all. All the rads has certainly relieved the pain in the areas done. It does take more than the 2 weeks, but what a relief.
I'm back out in the garden today. I have to move everything out of the side garden because we bought a new to us car & it needs a carport which DH is building. Yesterday we moved a large Katsura tree & 5 hedge trees, today there are 3 more hedge trees & a couple of small things. Good thing my Dr's can't see what I'm up to!!
Happy Sunday everyone! Cheers, Dee
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Lynne, gosh that was a frightening thing to happen to your husband. Great that he got such good and prompt attention. Sending him (and you) best wishes.
Dune, I've used fentanyl patches for the past three years. I find them much easier to use than tablets as they're absorbed directly into the blood stream. The patches made me sleepy initially (and still do whenever the dosage is increased) and then over a few days the body gradually adjusts. I'm overall dopier than I used to be but c'est la vie. I also take oxynorm for break-through pain. Constipation is a prob though. When I was on taxol its SEs (diarrhoea) counteracted the fentanyl. This is a helpful thread about constipation - https://community.breastcancer.org/forum/6/topic/7.... However I'm still messing around trying to find a natural solution to the problem but so far nothing seems to work effectively and I have to revert to Senokot tabs and Ducolose and if that doesn't work, Movicol. You have to be very watchful as I found to my cost. I was in hosp earlier this summer with bad headaches and vomiting and though I didn't think I was constipated apparently I was and that was what was causing my symptoms. Best of luck!
Hugs xx
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Aoibheann, thanks for the information about fentanyl patches and constipation. Yes, mine got very bad, and I believe my intestines are in pretty bad shape. I made my vegetable soup, and I had a salad for lunch. I'll look for corn silk tea. I guess I will drink some hot prune juice in a little while. It's bad when you start being afraid to go because of the pain. It must be done though.
Dee, wow, you are incredible -- and out of your ever loving mind! You must still have muscles. Well, generally speaking, my pain level is much improved since the radiation treatments. The reunion is Saturday. After that, I will resume going to the gym. I am just completely impressed with you prepping for a car port, moving trees and bushes. I did that when I was well, and it is not an easy job, to say the least. Wow.
I hope you hear all good stuff tomorrow, Linda. I have almost always suspected when things were not going well for me. Do you have a good feeling or a bad feeling about learning your results. We are all holding your hands.
Thanks for the info Bosco, Annie, and Patty. I'm sure you all know how these things go. Google burning urination. Oh goody. Bladder cancer, rare, but mostly coming from breast cancer. Slap that thought away. I have treatment tomorrow, and I will definitely be asking to see Candace, my nurse coordinator. She's amazing.
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Thanks Dune. My intuition tells me it's not good. My nurse said no significant changes but can't give more details. I don't know what to read into that. We'll see tomorrow. Gotta to do what I gotta to do right? Hot prune juice is also part of my arsenal! Good luck with tx this week and the reunion. I'm pretty sure it will be a huge success with all the work you put in to that. Hope to see some pics.
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Good luck Linda. Here's to positive results!! Myra
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good luck Linda I will be thinking of you tomorrow and sending good vibes.
Dee wow good for you we are having some lovely gardening weather, perfect for moving plants before it gets cooler. My oncologist told me as well don't lift anything over twenty pound...yeah right.
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Thank you 2-16, Lynnwood, and Megc for your responses to my ILC bone mets question. My onc believes in the PET-CT, but I will ask for MRI and/or bone scan if my PCP can't figure out my arm pain. Or if PCP wants an MRI, I will ask my cancer center to do it so those specialty radiologists will be the ones reviewing it.
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I'm holding your hand Linda, and I will get and share pictures.
One or maybe even both of those swollen lymph nodes is swollen again. Bummer. We agreed to go another cycle with carbo-genzar and then order a scan. I gave into that for my mother. She doesn't like me getting all those scans. She's worried about excessive radiation. That's almost funny really. I have a treatment tomorrow and really need to see that nurse coordinator because I have a lot of information I need passed to the MO.
So I just ate 3 chocolate chip cookies. It didn't help me feel better, but I know the cancer cells are very grateful. Ooh. I'll take some B17.. Maybe it will help.
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Dune I'm feeding my cancer cells too right now, some pumpkin bread and Cheerios.
I was busy today, took my kids to a birthday party, then cooked and just did things around the house w the kids. I think I have been getting sick from constipation at times. I will try the hot prune juice
Linda, good luck tomorrow, I will be thinking of you and hoping for good news.
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Dune, Yes indeed, slap that thought away! Bladder cancer, oh dear god! Good luck with treatment tomorrow and we want to see pictures!!
And you wouldn't be the first to tell me I'm out of my mind! I always done physical labour, so I can't stop now, though DH did help me quite a bit today. I built a rock wall & painted the exterior of the house when I was going through chemo. For some reason I felt totally energized (probably the drugs! LOL!
Wendy, funnily enough none of my onco's have ever given me a restriction on lifting, though I'm pretty sure they wouldn't have been happy with me the last 2 days.
Linda, perhaps you're like me, they said no significant changes just more prominent, whatever that means? Anyway, I'm keeping only good thoughts for you.
Anyone who is constipated, try a magnesium tablet after dinner. I was taking them by mistake, wow, big mistake, everynight I was running to the bathroom with the big D.
And on that note, I will say good night to everyone here, hoping you all have a pain free blissful sleep. Cheers, Dee
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