Bone Mets Thread
Comments
-
Babs she is gorgeous every baby is different. I had twins on my second pregnancy and I was huge at two months. She looks healthy and fit will be a big boy😊 So exciting must be hard to not be with her. Are you going over to help a bit towards the end of the pregnancy? You are 68 omg you look amazing thinking back to the wedding pics I figured you to be fifty maybe..
0 -
Babs, I'm so happy for you. Your daughter is beautiful and I'm sure that big baby boy is going to be wonderful to hold and will be loved by all of you!!!
I hope everyone has a peaceful weekend, no troubles just a nice summer weekend. I'm posting a picture that I took in the Philippines that always brings me peace. I hope that I can dive again, but with bone mets to the spine, not sure if I can carry a tank on my back and go down as deep to catch the beautiful sites. I still might give it a try!! Where there is a will there is a way. Enjoy NEMO!!
0 -
WOW! This is surreal. It almost looks like a cartoon drawing rather than real photography because of the saturation of the color and lighting on the fish! Gorgeous...thanks for sharing, and here's to diving again!
0 -
Wendy. Thanks for that compliment. Previously working for a plastic surgeon did help!!!'
My DD is here now-came back on 7/13. She works for a ny co and still has her apt just 2 blocks away so while she's here we spend a lot of time together. She's going back to Paris 8/17 and then we all meet in Israel on 8/22. She returns to ny on 9/5 and will be here until 9/17 when she moves to Paris and gives up her apt. I will miss her terribly. But we're going to Paris on 12/15 for the baby's birth. I'll stay for 3 weeks and my DH will stay for 2 weeks. After that she'll be back and forth for biz. It will be a major adjustment for sure but seeing her so happy makes it easy to do.
Bab
0 -
Babs, She does look a bit big, but it is probably just the way she is carrying. She does look beautiful!
Lynne
0 -
Babs~ your daughter is lovely and glowing. Motherhood clearly agrees with her already. She's beautiful and congrats to a wonderful addition to your clan! She's gorgeous! God bless her always. ~M~
She is All baby. Looks like a boy to me!!
0 -
Hi Babs, your daughter is beautiful. She doesn't look big to me, but I've never been pregnant:(. She looks slim and fit with a basketball in her middle. Is a basketball big for 41/2 months? Like Micmel said, "she's all baby".
0 -
Hi Babe, your daughter is gorgeous! I agree with Animal crackers, she is all baby!
Anita, you have a gift with that camera! Every picture you post is outstanding!
Hugs and prayers
Claudia
0 -
hi momalltt....i have a friend who is a miomassagolist (cant spell it) and has been doing massage for 30 years now. she has been told numerous times to stop massage because of the risk of spreading the cancer....the deep tissue stuff is ment to aid in lymphatic drainage and that will release those lil buggers hiding in there cuz lymph act like a filter.....its to bad about the facial, i find them more enjoyable than a full body massage....maybe she could use the money on the cert for products like skin care or maybe something special for the girls...most salon owners will understand and adjust that for you......big hugs
anita....another amazing photo....wow
0 -
Hi Nan, happy to see you here! I did not know that about massage. I have had a few since dx. I don't think I will be having any more. So much information on these threads!
Hugs and prayers
Claudia
0 -
Hi overjoyed.... When I was first diagnosed with mets (a year ago) I was hospitalized for two months because I literally could not stand up. I've got tumours in several parts of my spine (in the bone itself & then in the spine where the cancer's replaced the bone marrow). I made it out of hospital - with a walker & cane at first - and in time I was able to move freely. I've ditched the walker and cane and now go to the gym regularly & while I need to stretch several times each day I've got most of my mobility back. So glad you're not giving up hope - the treatments can work!! All the best to you.
Hello everyone - have just discovered this site and have been reading through the boards - I wouldn't wish this on anyone - but it's comforting to know I'm not alone.
0 -
Babs, Your daughter is so beautiful! She looks a little big to me but maybe that boy just had a quick growth spurt! What an exciting time for you!
Anita Wow! I can't even fathom how you got that shot!
On the working subject, I am at a crossroads right now. I want to keep working but just don't think I will have the stamina right now for my particular job. I can't imagine going back in 3 weeks like I am supposed to. However, I am absolutely petrified to let go of my medical benefits. I don't think we can afford the loss of income AND paying for Cobra. I would love to take 6 months off but would lose my position....I feel so stuck!
0 -
Artist, can you cut back on the hours for a little while?
Other than that, have you exhausted all your state disability yet?
They can't just fire you when you're on SDI. A decent employer will work with you. My boss STILL wants me to come back to work even after 15 months of this hell, but there's no way I can work....the chemo brain, the debilitating fatigue, the pain, etc. I can barely cook a meal and fold a load of clothes, for criminy sakes. After I clean part of one bathroom I'm wiped out for the rest of the day.
0 -
big b.....im not sure if the massage thing applies to all types of cancer and if it makes you feel good i would talk to your doc about it and only follow his advice if he/she seems sure about it....i think for some it may be kind of a gray area ....good luck
0 -
Anita, once again you WOW us with another beautiful photo! Love it
0 -
At Mskcc they sometimes offer a massage during chemo treatments so I would ask your MO about that!
Anita that shot doesn't look real. Totally amazing!
Artist maybe there's something you can work out so you can work fewer hours or differently. Most employers will work with you! I hope so!!!
Bab
0 -
Artist, That certainty is a dilemma. Are there any less strenuous jobs available in the same school system? (I seem to recall that you work in schools, but I could be mistaken.) Is there insurance available from your dh's employer? Spouse's loss of insurance due to loss of employment or reduction in hours are qualifying events for him to enroll effective the date of that loss. He should not have to wait for his company's annual enrollment period. Can you keep your insurance if you decrease your hours, as Lita suggested? I think it could be detrimental to your health if you return to work when you are feeling weak. Does your employer have a short term disability plan that will pay your salary for three months and allow you to keep medical benefits? If so, maybe that would be long enough for you to regain your stamina. Is there a long term disability plan that pays 50% to 75% of your salary once short term period expires?
Lynne
0 -
babs you're right, it may only apply to the deep tissue massage...i'm just not sure..i do know you need special training for massage on pregnant women, so they may just have different guidelines .....i wonder if a nice salt scrub would be ok? those sure feel good especially with all this dry skin that needs to be sloughed off
0 -
Artist@Heart
That's a big problem! I am still working but love it and too many obligations to drop it anyway. But, I think you sound like you want to make the change and now is the time to do it! Changing medical is scary thought, but that will happen sometime, and it sounds like you would love the free time! Just make sure that you have lots of things lined up for your spare time, stuff you love to do. Or, if you stay, take it day by day, week by week, see how you feel-
0 -
0
-
Hello overjoyed. I wanted to let you know that when I started radiation (I did five treatments) there was no change in my mobility at first. It was discouraging as all of the nurses kept asking me if things were loosening up. About a week after the radiation ended, I started on Xelora, and probably about a week after starting that my mobility began to improve, slowly but consistently.
I hope the radiation goes well - I'll be thinking of you on Monday - you can do it!!
0 -
Everyone here looks like they have known each other for so long, its beautiful. Children are beautiful, everyones pictures are beautiful!
First I want to apologize for lengthy post.
I start chemo next friday with Taxotere, Herceptin, and Perjeta. I could read about side effects until my eyes ran dry but does anyone have any good advice? This is my first time. It's going to be 300 min starting at 9:00 am. I'm scheduled for 6 months, once every 3 weeks. If I can't handle the Taxotere ( I still don't know very much about these drugs), doc says he can cut back the amount and do shorter infusions but more of them. I am seeing my nurse navigator the day before, a chemo 101. Doc has written a script for Lorazepam and zofran also. Again, I was diagnosed June 20th. Just found out I'm HER2+, it's aggressive and I'm not sure what's expected of me or how to feel about this. Too much too fast. Head is spinning. Does this stop?
My rib met started causing me pain a week ago and hasn't subsided-this morning I woke up to my knee/femur giving me grief. I was just released to using my walker to walk on BOTH! legs, my hip is still aching but it's better. I still can't turn on a light switch, right shoulder scapula met.
What are some of the pain meds that you've seen work the best for long term use? My employer called me yesterday. I was struggling to sit up, out of breath and it was hard to talk period. I ended up sending him an email text message later. The main point was "no I don't know when I am going to be able to transition back into my workplace, I am still in the first treatment planning stage, and I take pain medications". I asked my doc to send my workplace with a brief summery of my diagnosis and treatment plan, minus gritty details. I can't really do anything else.
What have been your experiences for the first time starting chemo? I know it's probably ugly, if it's too personal, I understand. I'm scared. That's the second time I've been able to get that out. And, Did I read someone wrote "real bone mets"? Is that a thing? The lesions in my bones are there, some a smaller than others, but they hurt a *SWEAR WORD HERE* lot. And the pain doesn't come on gradually. It's achy and then overnight, brutal. They show up on CT's.
I want nothing more than to get back in my kayak. My god I miss my boat.
Thank you to everyone, I love reading your trials and triumphs and happy things. Giving me a LOT of hope!
0 -
Dani_fd, Welcome to the bone mets thread. I am sorry that you have reason to join us. There is never a need to apologize for a post. It doesn't matter if a post is long or short, good news or bad news, happy or sad, complaining or celebrating. If something is worth posting, it is worth reading. I have not had chemo yet, so I can't answer your most pressing questions. I just wanted to say that everyone here knows that bone mets are real and they can be very painful. We also know that they can be treated. Others will join in soon to give you their advice and share their experiences with the treatments you will have. I know you were shocked by the news of mets. Things really will get better. That head of yours will stop spinning. Your treatment will begin and you will settle into what many refer to as a new normal. In the meantime, we are all here to support you.
Hugs from, Lynne
0 -
dani fd, welcome and I'm sorry to hear about your pain. Pain meds during chemo were tramadol for me, they don't want you to take anything that could mask a fever, I was fortunate and only needed it once a week for chemo induced muscle/bone pain (like the flu coming on).
I was initially given taxotere, Herceptin and Perjeta too but had a severe reaction and switched to taxol, then I had a severe reaction to that too and asked for Abraxane (a kinder chemo in my opinion). Wear comfy clothes, have someone with you for the first infusion and have some Imodium with you and at home, in case you need it.
I found chemo to be much easier than I thought it would be, I hope you will too.
0 -
dani fd, it's important to remember that today's chemo is no where near as bad as it was 40 years ago when my mom was being treated for soft tissue sarcoma. I had to get over that mental hurdle myself.
That being said, is chemo fun? Hell no! It's no walk in the park, but there are literally thousands of people all over the country receiving chemo daily.
Go to the class. The nurse will tell you how to prep. No need to go in great detail here as there is another thread on this board that will tell you what to have on hand every week to make it easier. They will also premedicate you with antihistamines and anti-emetics for the nausea. Stay hydrated!
If you live in a "green" state, get your medical cannabis license NOW. MMJ really helps with the anxiety and insomnia, and for me it helped the DEEP bone pain I had from the mets. Opioids didn't touch my pain at all. But everyone is different.
Like most of us, you will feel like you just stepped into an episode of The Twilight Zone for a while (only you can't turn the damn tv off), but as others have said, it WILL get better. Things will wax and wane, then wax and wane again.
You'll get strength and support from these wonderful women here, 24/7. Many women with bone mets have more than 5 years under their belts. One of the first things i had to keep telling myself is metastatic cancer is no longer an instant death sentence. Oncologists have a larger arsenal to work with, and new therapies are being developed and brought to market annually.
Surround yourself with positive people. It's ok to be angry and despondent, but try not to stay there for too long...you will need all your mental and physical strength to get thru this.
Prayers and hugs,
Lita
0 -
Thank you all for the information and Lita, Thank you. My sister lives in Oregon, she just sent me a care package from their cannabis store-all high CBD lower THC edibles, thats my go-to. Opioids do have a little effect, mostly to the lymph in my armpit and inflation in joints which I was prescribed when my hip broke last month. Other than that, I have noticed they don't work for the bone mets either.
I love that my daughter wants to play games with me to take my mind off of heavy things. Yahtzee, cards, Star Wars Monopoly. She is my star!
And, I never truly knew how many people I was connected to, they are very positive, and you are 100% there, it is making a difference.
0 -
milaandra - I had a CT of my neck and thorax when the lymph node first appeared. The biopsy followed that and then the PET. Biopsy confirmed BC is back. PET showed all in cervical, Supra and subclavicular, axillary and subpectoral nodes along with one spot on spine. CT was clean...
0 -
Babs. Such a beautiful daughter. She's all baby. Nice that you will get to help out and cuddle that little boy soon.
Dani , I am just diagnosed with bone mets. I had Herceptin when I was first diagnosed I started it and taxol at the same time. I recall that they gave me two benedryl as I started the infusion. I slept through it because Benedryl knocked me out. It had the least side effects of all for me. I had a muga scan before I started and after. Now that was 10 years ago. I am new to bone mets. The nurses and doctors will give you scripts for med if you have nausea. Wishing you good luck with all this.
Great women here to support you.
0 -
Dani - the most important thing is to get back in your kayak, and you will. In the meantime find gentler exercise options like walking. Don't stop moving, no matter what. If you want to meet women who did laps around the hospital pushing their chemo infusion pole join us on the stage V fitness thread.
Z
0 -
welcome Vancouver Deb I'm in Vancouver also West End 😊 So glad you found this resource.
Wendy
0
