Bone Mets Thread
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ct scan yesterday. Appointment Monday for results I haven't had any consistent treatment because of insurance so I'm praying no progression!
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leva ~ Just saw this... Check out what JohnSmith just posted on this thread! https://community.breastcancer.org/forum/73/topic/..., which is about the hottest new drug in the area of immunology -- Anti-CD47 -- a next generation Monoclonal Antibody (mAb) / immune checkpoint inhibitor therapy. Looks like they just announced a Phase 1 trial in your area of the world!
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Thanks Deanna. It was designed by my son and a younger son did the coding so it stays all in the family. We're actually gone for two blissful weeks. It seems like one week flies by too quickly so we started booking two weeks back to back. See you all later.
Amy
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deanna - it was obvious this was her normal behavior. As soon as it didn't go her way or it was taking to long she would start a temper tantrum. Sister immediately gave in and niece stopped. She def knew how to play the game. Sister would say she was going to spank her or put her in time out then instead would tickle her with itsy bitsy spider. Ugh. As someone else said sometimes you wonder if its the child or caregiver who needs s time out. I know who it was in this case. Ugh. Can't even imagine if this is the best behaviour what it is like at home. Oh my.
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Hi Deanna and everyone else I'm feeling slightly better no appetite but no nausea so that's all right still enjoying my moms vis
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vis
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flashback Friday. My and ds2 about 7 years ago
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SO CUTE!! Myra
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Patty, I love your picture ;and your story about back to school shopping was very encouraging for me. I know Myra complimented me on my fighting power, but it looks more and more like that was all talk. Two days of sick and I'm wondering if I can do this. I've had pain, but the worst of that lasts 4 hours. Now I know that I really need an nsaid, I expect to control it better. But days of diarrhea and nausea strung together shows me what a wuss I am. And the smell! Did anyone else experience disgusting olfactory assaults. I need to soak in bubble bath and salts 3 times a day to keep it away. Horrible.
Well I got behind again. I know aurora was feeling poorly but is a little better today. I know a couple of you have important scans coming up or had them today. Please be good news. I really hope for good news. There were 2 birthdays. Happy birthday wishes going out. Hopefully the right people catch them. Is it Dee who is helping her friend who has colon cancer. Best wishes Dee. Someone is off to 2 weeks away from civilization. Another is going to a pontoon? Another is driving to spend the day with friends around the pool. I just can't necessarily match names with news.
Thank you for tolerating my whining. Boy, it's a whole lot easier to be tough just thinking about chemo.
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Sorry no smile today. If I feel better tomorrow I'll give you one. What do you do when you're wiped out and nauseous? I have not been taking my dexamethasone. Would taking that lessen these side effects? Does anyone have any hints for getting through this better than I am? Thanks.
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Dune,the fact you are facing this head on takes an immense amount of fighting. I am so sorry the SEs are so horrible. I remember my first chemo 16 years ago, the red devil was awful, but I do remember eating small light meals hold off on meat as much as possible and drink lots of water. The last thing you are is a wuss.Virtual hugs to you, Myra.
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Thanks Myra. Any suggestions for food? You say hold off on meat. Dairy turns my stomach. Pretty much all I can tolerate is Lipton noodle soup with extra noodles, crackers, mahtzoh, and toast. I did eat a yogurt today because mom is pushing them. It didn't make me sick but the idea of eating another makes me feel ill.
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Dune, when I did chemo for Stage II bc, I found myself falling back on comfort foods. Don't know if that was an emotional thing, or if they were just easier on the tummy, but I was big into things like grilled cheese, mac 'n cheese (Amy's has a really good natural one in the freezer section -- also a gluten-free version), french toast, mashed potatoes, baked potatoes with broccoli and cheese -- things like that. I also had a hard time pushing the water you need to drink, especially in the day or two after your infusion to wash that stuff out, so I would add a splash of apple juice to sparkling water, or make a New York style egg cream by mixing chocolate milk and sparkling water. Anything to get the liquids in!
Also... have you checked the Chemotherapy Forum? There should be some really helpful tips pinned to the top of that board. When you do chemo for early stage bc, there are support groups here starting each month, so you rarely get hit with the unexpected or feel alone because there is so much information and support from others who get their infusions a day or two or three before you and warn you what to expect. But it sounds like doing chemo for Stage IV might be more isolated. Have you been able to find others who are doing or have done the same chemo you're doing now (sorry I've forgotten... maybe Halavan???) for input and advice? I just think it might help to really know what to expect -- not what the onc's office tells you! It also seems like you didn't get much of a break between Taxol and whatever you're on now, which must have also been very rough on you!
Big hugs to you! Hope you can sleep well and feel better tomorrow! Deanna
Editing to add... @Patty ~ Beautiful photo!!!
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answering to dlbI have been in 8 chemos. Actually for me there are 3 more on table and two coming out this year. The taxane type drugs were the worse for me. Others have certainly have there issues, but a lot of us take it as a challenge to figure out a better way to handle side effects. There are some very clever women. Different chemo can give you the different forms of nueopathy, to swelling, to vaginal and anal itching, to headaches, nausea, nail issues, feet blisters, fatigue, hair loss, joint pain...and many others. My food needs vhange with each chemo, so we have learned to buy to much at one time. Oh and pleurisy and fluid in lung , those you need to tell doc right away.
Good luck on all you chemos
Patty, great picture
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Thank you Deanna and Susan. Miraculously, the nausea left, maybe 45 minutes ago. I am so happy! I also feel a bit foolish. I didn't like was the steroid did to me, so I have not been taking my dexamethasone. I looked it up and it is supposed to help prevent nausea from chemo. So, I will take it, as prescribed, even though it feels like I'm going to feel fine tomorrow. So I'm sorry to have whined all day, when it was likely my stubbornness that caused the misery. I want to run in circles laughing about how much better I feel. Instead, I'll go to bed.
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dunes
This is a perfect place to whine. But I would not call it whining. I know I need a safe place to share the fear and misery. When I am in that dark place brought on by pain or fear I do stop believing things can change. I am so happy things changed for you and I am going to try to hold on to this example. I am wishing. for you a good day tomorrow.
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Glad you're feeling better, Dune. For what it's worth, I Googled why you need to take steriod with chemo, and one of the links that came up was to a page here on BCO. I'm going to give you that link because it mentions several reasons why you need the steriods -- not just to prevente nausea. It also talks about cutting the dose. Just thought it might be helpful. https://community.breastcancer.org/forum/6/topic/6...
And that's great that Susan might be able to share some good information about the chemo you're on. I'm so sorry you've been on so many, Susan. Here's hoping they've saved the best (in terms of long-term results) for last!
HopeFaithCourage ~ Prayers for no progression!!!
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Dune - I wouldn't call what you've said whining. You've been thru the treadmill on super sonic speed. Talk all you want that's what we are here for. Seems like I was the one just recently needing the support and you were there That's what friends do, right
My DSS spent the 2nd night in a row at the neighbors house. Ds1 came home at 1:30 am because of a tummy ache and nausea. Ds2 just got home for same reason. I am hoping its something they ate not something contagious. I am thinking about isolating them upstairs. I finally start feeling well I certainly don't want to catch something. I am just scared. They have no actual vomiting. They have nausea med. They have access to bathroom and fridge ( I just gotta stock it up and Lysol down afterwards ). They are 10 & 13. I hope this doesn't make me seem like a mean mom. 😢
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Hi all,
I'm way behind, so will probably miss some of you (sorry!).
Karz, Happy Birthday! And Happy Belated Birthday wishes to RonnieKay!
Dune - sorry you're going through this crap.
Aur - hope you're feeling better.
Patty - you're not a mean mom. And beautiful picture!
HopeFaith - good luck on scan results
So sorry to hear about progressing; praying for good news for everyone.
Hugs to all,Terre
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flashback Friday. About 2 years ago on Mother's Day at Memphis zoo
I was about 40lbs heavier. Ugh. Glad to get the weight off. My bones def feel the difference
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Deanna,
thanks for posting the link.
Patty,
cute picture
!Dune,
tomorrow must be better day !!!
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Deanna,
did You understand what means this exclusion data in that trial - Patients with neoperabelnoy tumor / metastases in a state of collapse (necrosis)
if I have bone mets after radiation (and I have not done any investigations after radiation) - how can I call it?
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Oh Patty. You are SO NOT a mean mom. You do have to take care of yourself or you will get sick. Please be very careful. Pass them the thermometer. Wear gloves. Mask too. And Lysol like a mad woman. I'm sure you've talked to them about your illness. They will get it.
That's an awesome picture. Your oldest must be taller than you by now!
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Dune, glad that you are doing better. Hang in there. To my impression, tolerance of drugs is a favorable factor for the success of the treatments.
Patty, nice photos of your beautiful family.
Deanna, just found out that my mets are probably exactly like yours, so no wonder we shared the similar burning pain experience. Very glad to see you are doing so well. My new knowledge of my mets (I recently changed my primary doctor who kept the diagnosing CT and bone scan results from me and would not explain why; my onc is with a different facility which only includes in their patient portals the test results done by them; my new doctor put the copies of the original scan results in my new portal now) bothered me. To my impression, diffused bone mets are harder to treat then foci mets, although I haven't learned anything in terms of diffused bone mets in relation with progressions.
All, have a great weekend! (Sunny, fresh, cool here. Beautiful morning)
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Another great photo, Patty! Your hubby looks like a rock kind of a guy!
Leva, on first glance, I do not understand the sentence you asked about. But I just sent it to my sister (she's in cancer research), to ask if she can explain it to us.
Xavo, I have also read that diffuse bone mets is harder to treat, has a worse prognosis, blah, blah, blah. But I also believe that the healthy things we do for ourselves put us ahead of the curve, so to speak. In other words, while those observations may apply to the dx'd population in general, they do not necessarily apply to me based on my excellent overall health and lifestyle choices, as well as my involvement in my tx. Plus bone building drugs -- maybe not even available when some of those articles were written -- should also make a big difference in outcome. I also try very hard not to let myself dwell on any negative thoughts because I believe the mind-body connection is extremely powerful. So my best advice is... accept that there is some obvious truth to it (afterall when untreated it's got to be a bigger tumor load than one or two small spots would be) ...stay motivated to do well... and don't let this or any negative thought bring you down for more time than it takes to think it through and move on.
Gotta pick up my house for unexpected last minute company coming from two directions today. It's also my DH's b'day, so a busy day. That member list is done -- unless there are any last minute adds, which I'll gladly accommodate -- and will go out as soon as I have a few minutes.
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dune - yes my oldest is taller than me. Nothing like looking up to him to remind him to do his chores correctly. Glad we took the time when they were young to teach them and enforce manners and rules. Lol
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Hello to everyone, just lost my post and have to start over. Trying to catch up from yesterday.
HopeFaithCourage, praying for good scan results. Sorry to hear you haven't had consistent treatment because of insurance issues.
Dune, hope you're feeling better, this just isn't fair and you definitely are not a whiner. Glad the dexamethasone is helping.
Auroaya, I hope your appetite has improved a little.
Terre, nice to hear from you, and no worries if you missed someone, it's hard to keep up with this busy thread at times.
Patty, you have a beautiful family, loved the pictures and your smile is gorgeous.
Deanna, thanks for your wealth of knowledge and input here, enjoy your company and try not to overdo it.
As I promised, a pic from yesterday's fun in the sun with my BFF. I am in the bluish bathing suit.
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annie -thanks for sharing your pic. You are looking good. Didn't even get your hair messed up,lol. How are you feeling? Did it exhaust you ? Did you get some just girl time ? You look happy
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