I was dx with a bone met at original dx in Oct 09. Recently I have been shamelessly picking the brains of other ladies with bone mets wherever I find them, and have found the process very helpful and often encouraging. It has enabled me to be less panicked about my prognosis, and given me a much better understanding of my condition. I now have a whole new set of questions to ask at my next consult - bet my onc can't wait!
I know I would find it very useful to have a designated thread where experiences can be shared, and advice sought - so if you agree and also have bone mets perhaps you could check in here and we could get the process started. I know it's a bit quiet at the moment, with many away on holiday - but here goes .....
Moijan, When I lay down to get my CT, I always think get up and run NOW! Run now you can run free and just say I quit I'm done! Then I say or you can be brave go thru with it and it will be what it will be! Maybe if you go through with it you will be stable and enjoy more life. So far I haven't run free!
Hello everyone, thank you for your good wishes.
Funny things scans, I lay in the mri scanner thinking, these pauses between being told to 'Breath in...blah blah' .....are very long today, whats happening? Have they just seen everything has GONE! Are they worried because they think theyve lost it?
then I thought 'oh no, theyve found the opposite, they are pondering how to tackle this!....'
Lastly.. the voice of reason said' they must be teaching, I heard lots of chatter in there last time they said...'breathe normally.'..
when I got out, I asked 'are you teaching today? And they said 'Yes, we were showing X how to...'
so that just goes to show how the thought demon can take over!
Boneariensis , getting scan results by post must be a bit scary? If you were worried who would you chat to?
on the other hand maybe you live a way from the hosp?
Good luck to you too jultz xx
Carolyn, I think chocolate is a good option( my bum and tum thrive/grow really well on it!) it has a lot of antioxidants and love hugs in it! Much love, hairless hattiexx
julzd, moijan Good luck with your scan results. These appointments are so scary. It can be hard to ask or say all the things you have been planning for weeks before hand. My last 2 results have come by post though, if they had been bad, I don't know what would have happened, I usually wait at least an hour having got there at the appointed time which doesn't help.
Carolyn, hold your head up high my fellow choco-ohlic, I too cannot go 1 day without a chocolate fix, even if it is just a chocolate biscuit some form of the yummy stuff has to pass these lips!.....by the way did you break last night?
Good luck to those having scans / results this week.
Hugs Janette xxxx
me too, am waiting for results of my mri on Wed. I'm right there along with you and Carolyn, I often feel like running away,( tho my onc is a lovely guy) maybe we should try a bar of chocolate? Carolyn?
We have had a new ceiling in our living room, the house is a tip. Redecorating today. Haven't done any of that for some time, the skirting boards have got further away and sitting on the floor isn't an option. Furniture should be back by the end of the week. Grandchildren and daughter came for tea. My latest bone scan showed stable which is good as my son-in-law (in the RAF) is going away for 6 months soon and I will hopefuly be able to help my daughter retain her sanity.
Hot, nasty humidity! It's been like this for about 3 weeks! You don't even want to go outside. I hate being inside. I would prefer to be out grilling, pina colada in hand, tiki torches lit, playing some games. Haven't had a dinner outside in weeks. Had a couple events we wanted to go too, but just to scorching. Oh well, maybe next year. Supposed to get storms today and be cooler this week.Hoping they are right!
Carolyn, I know it's the metropolis because this all started 2 weeks after I started it. I just didn't realize it at first. I thought I must have twisted my knees. Til I realized it started right after starting this. I also need new knees. I'm sure that's why it has hit them so hard. It also hit my shoulders and hands too. I stopped the prednisone in case, but also to help me lose some of this weight. I wish I could get off this one heart drug bc one of the SE is rapid weight gain. I started gaining right after I started it. Hoping exercise and some weight loss might make it possible to get rid of it.
Good Morning ladies! I'm going to try and do some cleaning today. I haven't done much housework lately and it shows.I've been trying to adjust to know prednisone! I've taken it for a long time and my energy level is at the bottom of a pit. I have been doing some exercises that my friend gave me. She is a physical therapists. I've been doing them every day for 2 weeks. I even added a few more. I did find 2 that totally kill my knees. It puts the pressure on them. She said not to do them for now. Might be able to do them if my muscles get stronger or some day when and if I get my knees replaced. I'm trying to make a new change in my life every week. This week I'm adding a 5 minute walk 2x a day. I noticed when I go shopping that I always grab a cart. I realized the last few times that I'm not just pushing that cart, I'm heavily leaning on it. I was leaning on it so hard that my arms were sore. I was in the store for about 45 mins and a few other errands. My knees and legs were screaming obscene words at me. I decided I need to start and walk and build up. All of these physical changes in me have been since I took this letrozole/ibrance combo. Also, have been working very hard on my weight. I am diwn 10 lbs. I'm fighting back! You girls having alot of fun shopping and visiting with grandchildren and puppies. No, grandchildren here! I do have 5 grandpuppies.They usually end up visiting for a, bit every week.I have one dog, Maggie. She is a yellow lab. She enjoys all the dogs visiting. FF
Carolyn, no white sandy beach for me either........well not for 20 days anyway (not that I'm counting 😆😎)
Got my little girl Heidi for the day today, love having her she really is like having a grandchild, we spoil her something silly for the day then when she goes home a quick tidy round then relax and wind down!
Hope everyone is doing okay and having a nice lazy Sunday.
Hugs Janette xxxx
Hello Carolyn, no white sandy beach for me! I'm sitting at home watching crafty channels on TV. I was shopping from one of them yesterday - you would be proud of me! Also, the other day, bought a comfy chair for my bedroom as I sometimes like to sit and read there (the pink antique chair is too low, and not that comfy really).
Hope the bone aches have subsided.
So pleased your bcn got back to you and that your Onc is prepared to scan to give you peace of mind. I think it's a good idea to see how things go over the next few weeks i the knowledge that should the headaches come back and you get concerned action will be taken,
Hope the headaches stay away.
Have a good weekend xx
Hi Carolyn, my bcn rang me this afternoon with regards to my headaches, my onc has said if I'm concerned about them she is happy to arrange a CT or MRI, as they haven't been too bad I have said I'll see how I go on over the next month or so and get back to her they persist.
Hugs Janette xxxx
Marirose I'm so pleased the info was useful for you, yes definitely mention it to your MS nurse, with MS and SBC you sound like an ideal candidate to me. Fingers crossed xx
Julie thankyou for the information for the cannabis oil I found it interesting especially as I also have MS I shall be asking my MS nurse next month. I am suffering with pains that are linked to both I was unaware that there is a spray that contains cannabis for MS.Lets hope the N.H.S get their finger out and legalise it.
Hello, hello, just before going to my second chemo, had to tell you that I was with my oncologist yesterday for the regular meetings before chemo, blood results are fine, and she thinks that the lumps have become smaller and softer (which i presume is a good sign, only after one cycle of chemo). She will book me an ultrasound in 3 weeks time to confirm though. I asked her if she does not mind me going on holiday, she said that it is not recommened for anyone on chemo, but after all we agreed that I may go. Why is that so, because of possible SE?!! I am not that type of person to lie on my back and wait for them to happen... Anyway, I have to by compressive stockings above the knee as she told me, and walk around during the flight, before and after...(3 hours) and drink lots of water. May be that is sensible. Has anyone had a flight between the chemos? How was it if so? Sorry if my questions sound stupid:)
Carolyn, I am sending to you some positive energy and airlike pain killers, breathe deeply and hope you will drive them away!!!
ladies, if its working, think seriously before coming off it...I was told to come off it after about seven years and the cancer came back-Letrozole no longer works. To be honest Letrozole was so much easier..could go on holiday, leave the country etc, now im tied to a cannula two weeks out of three, and my veins are hard to find!
honestly, weigh up your own pros and cons before stopping, as the bc will get resistant. I also found that Novartis original version had far less side effects than all the other versions.
love and Hugs
For those interested in the cannabis oil I cam accross this article (if I can get the link to paste here)
There is hope yet that the NHS might one day provide access
Hi Carolyn, still not heard back from bcn! Which doesn't surprise me to be honest as she has an habit of that. She usually sees her in clinic on a Thursday so will see if I hear from her tomorrow, as it happens head has been okay since Friday so hoping it's just something and nothing.
Well it is glorious here in the usually rainy manchester 😎 Hope everyone is enjoying the sunshine and keeping well.
Hugs Janette xxxx