Bone Mets Thread
Comments
-
Valerie, What a wonderful name for the technician. I would have cried, too, but I seem to get tears-eyed quite easily these days -not because I am upset, just moved or touched. That pie bar cafe looks and sounds wonderful. I hope your blood test results are good.
Lynne
0 -
Great story Valerie.
Cristina - Sounds like your husband is at the opposite end of the spectrum from mine. Mine just acts like I should be "normal" and nothing is wrong. I hope you don't mind, but I asked my DH for suggestions to respond to your DH. He said, "tell him anything could happen. You just don't know. The All Blacks could lose the world cup on Sunday, the Lions (Detroit) could end up in the Super Bowl, and they could find a cure that stops this crap in its tracks. You just don't know." The All Blacks are the NZ national rugby team and we play Australia on Sunday for the world cup. Anyway, that's advice from a man. And 50s girl's advice is good too, I reckon.
Lynnewood - thinking of you today.
Rush - whoo hoo! Great news! I know exactly what you mean. When I had my last CT scan my MO (who is a brat) said, "well, I have something to tell you about your brain. It exists despite any evidence to the contrary." Brat. Incredible relief.
Wendy - pat pat pat. Made me laugh. If someone calls me "poor dear" or "you brave thing" once more.....
Love the pics of the houses. I love the older houses. We almost bought a craftsman style bungalow - the house was charming. But we fell in love with the land attached to the 1950s house. It doesn't have huge charm, but it has huge windows, and it's got high ceilings, which I love. And it has "good bones" as they say here. Dee - hope they can move the house. And good luck with your flu shot.
To each and every one of us - hoping for a lovely pain free day!
Terre
0 -
Okay. I need your opinions. I had a rod put into my femur 6 weeks ago because of a hairline fracture caused by radiation and mets. Last week I had to have a blood transfusion because my red blood cells were so low -- something like 25/8. They think the reason for the low blood count is because of mets, radiation and my 3 months on a macrobiotic diet. This week I went back to work part time. I work about 4-5 hrs. Per day. I am exhausted!! I just got home at 3:00 and I can barely keep my eyes open. Is the exhaustion from the surgery ? Continued issues with red blood cells? CancR? Will I ever feel normal again? I had a pet/ct less than 3 wks. Ago and everything was stable. The radiation sites were shrinking. Before thus I was one really healthy lady and I'm not sure what operation recovery time is like. If anyone has been through this and can weigh in I'd appreciate it.
Rachel
0 -
Cristina, here's a good article on cancer and sugar. Hope this helps.
http://www.dana-farber.org/Health-Library/Sugar-and-Cancer-Cells.aspx
0 -
txmom,
Thanks for that link. Consuming lots of white sugar is ill advised for anyone, but the article really clarifies that old "sugar feeds cancer" meme. I think the comparison between the medium orange and the donut was very useful in furthering understanding of the issue. I also agree that trying to follow a highly restrictive diet can be stress inducing in and of itself.
0 -
I am trying to keep up with the posts and I am reading and praying for everyone.
Got the results of my pet/ct scan - This has been a long road to getting a diagnosis. Good news it's just in the bones. Right rib with fractures from the lesions, left femur hip area, right illiim, and 2 tiny areas in the T1 T9 area. All lytic. I had an X-ray today of my hip to see if they can see anything more regarding fracture etc. I am only on my second day of Ibrance, and a week on the Femara. How long before the pain starts to go away? I can't even walk with a cane.. I am not thrilled with MO, and as of the first of the year my new insurance will cover me at Dana Farber so I will be under the care. Right now I am just consulting with them.
Hugs and prayers to all, I will try and keep up better once I feel better.
0 -
Rachel - Having had that surgery, I will say that 6 weeks is a very short time. It will take about 3 months for your body to heal from that surgery. You will feel normal again, but it takes time. Don't put too much pressure on yourself. My Ortho told me I would be up and about in 2-3 weeks (he's the best but a bit too positive), the Ortho nurse said no way. It is an invasive surgery and it takes months to fully recover. Shrinking mets and stable is awesome.
Lovesm - Yay on bone only! We're all different and there is no one size fits all answer, unfortunately. Are you on a bone strengthener like Zometa or Xgeva? That along with tx should help for the pain with time. Did your Onc suggest rads for the pain? Do you have adequate pain meds? More questions than answers, sorry.
0 -
Linda- I start Xgeva soon. I see MO next Tuesday and had X-ray today as well to see if there is a fracture. I also took it upon myself to call RO and get an appt to reevaluate this. MO drags her feet.. When they saw I had a lytic lesion in July they kept doing more and more tests to see other things when I should have had a bone biopsy back then. I resent that now that they didn't get the biopsy done asap. I do poorly with pain meds so I am in bed most of the time. Easier to lay still then vomit with broken ribs. Even zofran doesn't take away the nausea. So far I don't feel horribly nauseous from the Ibrance but I have only had two doses.
Thanks, Carol0 -
Carol - You've got things under control! Good on you to see a rad onc. Sorry you're in so much pain plus nausea. What about Tylenol with ibuprofen? Pain is so difficult mentally and physically. Praying your pain gets better soon.
0 -
Carol, Is your pain mainly from your fractured rib and/or hip? Have you discussed radiation with your MO? I have two fractured ribs which have been radiated in 2 separate sessions and the radiation helped. Are you nauseated from the pain or the pain meds? Ask your MO about a fentanyl patch. It helps with pain and bypasses the stomach. Also ask for a stronger dose of Zofran and stay on it so the pain/nausea doesn't get ahead of you. They can play hand in hand.
Amy and Deanna Did you have Faslodex and Xgeva today?
LindaE, still doing ok with Xgeva? I had to start another 14 day regime of Prilosec because of acid reflux that has reared its head again from the Xgeva, but otherwise doing ok.
0 -
Hi all! Haven't read back to comment on anyone's post but wanted to thank you for all the good wishes for my scan today. My onc called me less then an hour after I had the scan...I was so scared when she called me and I was sure it was bad news. She said she wanted to let me know that she was very impressed with my scan and cancer is still just in the bones. What a relief since my tumor markers went up for the first time ever last week. Only 4 points but i was freaking out! Also met with a genetic counselor and had testing done for many genes, not just BRCA. Apparently they are using some drugs currently used for BRCA positive ovarian cancer on some breast cancer patients and they feel it's important to get the genetic results sooner then later. Not really sure I quite understand.
0 -
Lindalou - doing OK but very tired. Slept a good part of the afternoon again, but no more nausea. I much prefer this to the 2 hour infusion.
0 -
Rachel - what Linda said.
I had the same surgery. It took a good 3 or 4 months before I was back to 'normal'. Not sure when you had your rads, but those take a lot out of you too. I had rads after surgery, so that may have contributed to my long recovery time. The physical therapist and my ortho doc said a year to be back to 100%.Carol - sorry you're in so much pain. I'd try some different combos, like tylenol + ibupropen, Alieve (that's what it's called in the US),and/or ask for something like Celebrex (arthritis med, prescription only) to see if any of those help. I had heavy duty stuff, synthetic morphine, and the over the counter stuff actually helped more and made me less sick.
Lynnwood - woo hoo! Glad for good news!
From what a friend who's undergoing immunotherapy and other experimental treatments for mesotheloma, genetic testing will be routine in a few years so they can customise treatment to the patient. At least that's what his MO told him. So I think it's great you're getting the testing done.
Well...back to work...
Hugs to all,
Terre
0 -
Thanks Linda E54 and Terre, I finished rads around August 12th. Had a hairline fracture to the pelvis, then the femur. I'm glad to hear that exhaustion part of it. I'm trying hard not to be hard on myself. So six weeks is still early in the process. Good news. thank you!!!!!
0 -
Thanks Txmom good article I'm not stressed but I really didn't want to give up my oranges too. I just walked through Costco with my sister her cart was full and I had a bag of carrot and some kitty litter. Can't eat any omega six oil and that's in everything can't eat meat or soy or dairy. What's left an orange....
0 -
Hi again,
I am definitely not into a restrictive diet and I haven't been restricting my sugar intake. My coworker and I shared a piece of chocolate today and it was 30 seconds of heaven!! After Halloween I'll do some restricting but not NOTHING, that's too much for me. I was inquiring more from a curiosity standpoint more than anything.
I will keep working on my DH, but I did finally get him to understand how serious this diagnosis is. I do have hope but if I start telling him I'm going to live years, he's honestly going to get confused as I already told him the 33 month time frame. We will work on things bit by bit I guess, no other choice.
I am so sorry for those of you experiencing nausea. How horrible. I'd ask for stronger meds, I think someone mentioned something stronger than Zofran on FB but I can't remember the name. There's always marijuana as well.
Rachel I think you need to give your body some more time to recover. I'm glad you are back to work but there's nothing wrong w napping as soon as you get home!! That's what you need right now!
Feel better LindaE. My next Xgeva, Lupron and Faslodex are Monday.
0 -
carol and Rachel I dont have any new wisdom for you but wanted you to know I am thinking of you and wishing you well. Be kind. to yourselves I believe pain is exhausting.
Linda I do hope Xgeva treats you better than Zometta and that your bones can get stronger.
kiwicatmom Keep meaning to add my congrats on your new house!
cjanet I hope it is progress in your relationship I read in your post. Just wishing you can find some peace.
Food is so personal for me. I have tried restrictive diets and have not been able to maintain them. I am working at uping my colorful veggies in ways I enjoy. Also, I have a lifelong relationship with cake that will stay with me. But not eatting cake as often as Id like and leaving it for special occassions works for now.
Enjoy Friday everyone.
Mary
0 -
Thanks, 3-16! Less than a month to the big move. I'll post pictures when we get there.
Wish it was now - the flowering cherry trees are in bloom and they are stunning. They will likely be out of bloom by the time we move. Oh well..next year!0 -
Can't wait to see your new home KCM! Pictures, we want lots of pictures.... and pictures of kittens! Sorry, I'm a bit giddy from taking my meds!
Cristina, I hope he eventually "gets" it, sorry you're having to deal with this as well. It's so much easier when you have a partner who will help you when you need it.
Rachel, you had some good advice from others who have been there, I have nothing to add, except take it easy, it's a process.
Lynnwood, good for you. Love good news!
Carol, I just finished my third round of targeted rads & it sure helps with the pain. It does take 2 or 3 weeks for the pain to go. I did have some tumor flares which can hurt like the dickens but I take my tylenol/ibuprophen combo & it works great.
Can't think of who I'm missing here, LindaE & L, Annie, Patty, Wendy, Dune, 50's girl, Kendra, NYC, BF, JR, Brxgrl, Txmom, OMG!! there is a lot of us, that kind of sucks, but glad we're all here to support each other. Cheers, Dee
0 -
Good morning to everyone,
Thanks for all of your support and advice during my water disaster. I spent yesterday trying to recuperate from the agony I caused to my back trying to clean it up, never again. A lovely member pm'd me the number of a clean up crew but by the time I made the call it would have been hours before they got out and I would have been asleep. At least I know if it ever happens again who to call, I didn't even think of it as I was in panic mode. My back is still very sore today.
Dee, made me think of you and all the physical labor you do, I don't know how you do it but I have a new amdiration for you.
Linda, glad to hear that aside of a couple of unwanted side effects you're preferring the Xgeva over the infusion. I may be joining you and Lindalou soon.
Cristina, yay to the 30 seconds of chocolate heaven. I always joke and say I'm on a seafood diet and people are like really? To which I reply yep, I see food and I eat it! No restrictions here but everything in moderation.
Rachel, go easy on yourself, you've been through alot and as Terre said the recovery takes months.
Terre, can't for you to be in your new home, so excited for you!
Hugs to everyone, I'll try to catch up a little more later, Annie
0 -
Sitting in oncologist's waiting room, waiting for my second Xgeva shot. I took half a sedative last time and so was full of courage, but I do remember the very painful burn. But-- I lose two days after that sedative. Can't drive or go anywhere, swaying when upright, not remembering things I said or that were said to me, etc. So, today I opted to not take the sedative and brave it. So I'm now starting to panic a little, while I sit here and wait. I keep telling myself I will soon be looking BACK at the injection, instead of worrying about it coming. Sending wishes to all for a sunny and painfree as possible day. x
0 -
ken- you can do this. I'm praying for you. Hugs.
0 -
Valerie - yes you can do it!
0 -
Kendrasue, We're here for you! You can do this. Hugs, Dee
0 -
Valerie, you are probably done already so enjoy the rest of your day and I am wishing you a sunny and painfree one too!
0 -
I guess it's venting time for me... I am not thrilled with MO- and I think for the most part she may think I am a bit pushy. But to be honest looking back at everything I have been through since early July, the results on an X-ray that showed a lytic lesion to my illiim should have been biopsied then, not Oct 1. With that being said, I have never had pain in the area that was biopsied and still do not. BUT the pain in my hip area has me down and out. My pet ct scan this week confirmed the met to the area of hip I have the horrible pain. X-ray was taken yesterday (after I insisted) and there is no evidence of fracture (just thinning) so I took it upon myself to call my RO from 18 years ago and I have an appt with him next Thursday to evaluate if rads can help me. In the interim, they are getting all of my films etc to help me. If I wait for her it would be another two weeks. I can switch to a different group of onco's. I am so up in air on what to do. The convenience is the 15 minute drive vs 45 mins. Has anyone ever just switched groups because of not feeling like they are paying close enough attention to what you are saying? I never speak with her ever, only the nurse who always calls me back.
Thanks for listening.0 -
lovesmaltes
I did change MOs back in 2011 because my prvious MO who is. known in our community to be brillant, because I just did not feel heard. I switched to the MO I still have now. My MO is a great listener and always gives me all the. time I need. So he is always late but thats ok with me. For me the change was worth it.
mary
0 -
Valerie, I hope you are feeling better now that the shot is over and done with. The anticipation is usually worse than the "thing" itself.
Mary, I have never changed my MO, but I would not hesitate to do so if I felt that I was not getting the attention, treatment, or responses I expect and deserve. For you there would be the inconvenience of the additional driving time, but I think it would be worth it if you would be more comfortable and have confidence in a different dr. We are in this for the long haul, and our MOs play a huge HUGE part in our future. Do what is right for you. You owe it to yourself.
Lynne
0 -
Valerie, hope all went well with your shot and you're happily pain free.
Hydranne, this is strange as I was just thinking of you this morning and here you are. That is great news to be in remission, and I'm hoping NED is in your future. Thanks for checking in!
0 -
Hydranne- Great to read your good news I love good news!!!
0
