Breast Cancer Now Forum

Thank you Lori. There definitely will be more adventures. I'm not going to let it get in the way of doing the things I want to do. As soon as I get these clots in my lungs under control so I no longer feel breathless all the time, I'll be planning my next holiday. It's important to have something to look forward to. I'm back to weekly chemo now but that doesn't mean I can't go away for a few days between weekly treatments. I'll make it work.  ... View more

Hello all!   am back in the board to let you know I'm back from my little holiday and have finished my whole brain radiotherapy. Just wanted to share a pic from my holiday to make you jealous.    You can also read about my latest adventure on my blog.    https://lifeistooshorttoskipdessert.com/2017/09/09/my-not-bucket-list/   Cheers   Marnster     ... View more

Hello everyone!   i am back from my mini break and have finished my WBRT. I am feeling ok from the WBRT but I did develop some clots on my lungs during the week that has caused some breathlessness. Think it's just from being a bit less mobile lately as have had bad vertigo and vision problems. Didn't stop me having a great holiday last weekend though. Here is a photo to make you jealous.    You can also read all about my holiday in my latest blog post if you're interested.  https://lifeistooshorttoskipdessert.com/2017/09/09/my-not-bucket-list/   Hope everyone is doing well.    Marnster    ... View more

Great news Kay! So happy for you. So good that it is working for you. Long may it continue!  ... View more

Hi Kahya   Welcome to the board but I'm sorry you have to join us. Feel free to ask any questions and I'm sure someone will get back to you. I found my first brain met earlier this year and have now had a few more. I've had stereotactic radiotherapy, stereotactic radiosurgery, brain surgery on my cerebellum and am currently having whole brain radiotherapy so it seems like I've tried all the main treatments for brain mets now so if I can offer any assistance or advice, let me know.    I'Ve been writing about some of my experiences of these on my blog if you want to check it out and have time. I know you said you're very busy with your kids so you don't get much time to read stuff. I'm in Australia, but I think the treatment process is quite similar, wherever you're having it. Good luck with your treatment.    https://lifeistooshorttoskipdessert.com   Cheers Marnster ... View more

Hi Truffle   Good to hear from you and check that you are still hanging in there. Hopefully the oral chemo drug you are on (probably Capecitabine?) is breaking through the blood brain barrier and keep those yucky brain mets under control.    I am eight sessions in on whole brain radiotherapy now and am feeling ok. More tired than usual and have terrible vertigo. Hoping the vertigo will improve when the brain swelling goes down. I'm going away on a little mini break tomorrow with friends so I will have my final two sessions when I get back next week.    Still have double vision. Not sure I'm going to see any improvement there. Might go see an opthamalogist when all the swelling has settled and see if there's anything that can be done to improve my vision. Would like to be able to use two eyes again instead of shutting one all the time so I can see straight.    Hope all the ladies on here are doing well. Take good care of yourselves.  ... View more

Thank you Kay. Feeling ok after today's first WBRT session.    Have an an island paradise holiday scheduled for weekend after next and am not going to let anything get in the way of that so expect some more photos to make you all jealous soon!   Am also thinking about my next holiday after that! ... View more

Looking good Babsy! Hair grows back. Main priority is zapping that leptomeningeal cancer and making you feel better. I'll be joining you completely bald soon. Though am already practically there. Had first WBRT today and all went quickly and smoothly. No side effects yet. Did need to have a late afternoon nap when I got suddenly tired. Probably not great for my sleeping pattern but think it's important to listen to what my body wants/needs arm moment.  ... View more

Happy weekend everyone! After having brain surgery two weeks ago, I now know my next steps in my treatment. I've written about it on my blog if you're interested in the details.https://lifeistooshorttoskipdessert.com/2017/08/19/what-happens-next/ The highlights are that the MRI I had this week found at least six new lesions on my brain with potential for more to be currently developing. The upshot of this is that I will be starting whole brain radiotherapy on Monday. Not the news I was hoping for, but at least I know what is happening now and have a plan in place for treatment. Hope everyone is doing ok. ... View more

Happy weekend everyone!   After having brain surgery two weeks ago, I now know my next steps in my treatment. I've written about it on my blog if you're interested in the details.https://lifeistooshorttoskipdessert.com/2017/08/19/what-happens-next/   The highlights are that the MRI I had this week found at least six new lesions on my brain with potential for more to be currently developing. The upshot of this is that I will be starting whole brain radiotherapy on Monday.   Not the news I was hoping for, but at least I know what is happening now and have a plan in place for treatment.   Hope everyone is doing ok. ... View more

Good luck with your MRI results today Mojian.    Thinking of you.  ... View more

Hi everyone   Been a bit quiet lately because I've been recovering from brain surgery, but that feels like a bit of a cop out because the recovery has been really easy. This time last week I was just being transferred out of one night in intensive care to a general ward and then I was home by the next afternoon. It's been nice to be home back in my own home.    Everything is healing really nicely and i feel pretty much the same as I did before the surgery. Unfortunately I still have some double vision and unable to stop going cross-eyed. It's ok if I close one eye so have started wearing an eye patch the last couple of days for getting around.    Having an MRI on Monday so hopefully that will be able to work out what is causing the eye problems so we can fix it. Not sure what the next treatment option will be, but expect some kind of radiation to an area on my brain.    Dont go back to my medical oncologist until until the end of the month to discuss when we re-start chemo. No doubt will depend on what is happening with the radiation as they won't do both at the same time. Haven't had any chemo since 18 July. It's amazing how quickly your energy can return when you have these breaks. I always feel it's not affecting me that much. And then I take a break and start wondering to myself, where is all this energy coming from??   keep up the good work on Eribulin everyone! Hope it continues working for you for as long as possible and the side effects are manageable.  ... View more

Hello all    Brain surgery done and I'm feeling pretty good.    Hope everyone else is going ok.    https://lifeistooshorttoskipdessert.com/2017/08/05/what-brain-surgery/   Marnster ... View more

Best news ever Babsy! So happy for you! ... View more

I am off to have brain surgery on Friday for the cystic lesion in my cerebellum.    I've posted about it over on Life is too short to skip dessert blog if you're interested in the details. My eyes are getting much worse so hard to type up the story too many times.    https://lifeistooshorttoskipdessert.com/2017/08/02/its-not-brain-surgery-wait-a-sec/   Hope everyone is doing ok.    Cheers   Marnster ... View more

Good luck with the capecitabine Truffle! I had six rounds of it last year and found the side effects quite mild. Hope it works well for you.    It looks like I am going in for brain surgery on the cystic lesion in my cerebellum. My case was reviewed by a bunch of neurosurgeons, neuro-oncologists and neuro-radiologists and the consensus was that it looks like the cystic lesion is still active and growing, despite the stereotactic radiosurgery a month ago. There is also a lot of swelling in that area and they don't think it's coming down as quickly as it should. There is a concern what with the swelling and the lesion growing, it will start pushing into other parts of my brain and put pressure there. I've increased my steroid dosage to help control the swelling. Headaches are mostly under control but my vision is pretty bad. Lots of double vision. Currently typing this with one eye closed so I can see the screen more quickly.    Plan is to have the aurgery on Friday but I don't have an appointment with the neurosurgeon until Thursday so I don't know a lot about what the surgery involves or the risks yet. Hopefully all relatively straightforward, they can get it all and relieve all the side effects I'm currently experiencing.  ... View more

Hello all!   Yes, I managed to get out of hospital after just the one-night stay and made my flight home. Had my chemo appointment scheduled for Tuesday and went to it, but they were a bit concerned about proceeding because my temperature was a little high when I arrived, but lower after being there for a couple of hours. But my white blood cell count was also lower than it had been the previous day when I was in hospital so they figured it just wasn't worth the risk. I'll go back next week. I got an injection to boost my white blood cels.   My doctor also sent me for a CT scan to check waht was happening in my head and lungs. She said she was happy with my lungs. A little bit of tumour progression there, but everything else looked consistent with having a chest infection. The two new spots they found on my liver last month have also grown a tiny bit.   There is a lot of swelling in my cerebellum from the stereotactic radiosurgery. I had three spots treated a month ago and the biggest one was a cystic lesion in my cerebellum. The cyst is bigger than it was when it was treated, but my radiation oncologist is hopeful that it still may shrink as the rest of the swelling goes down. I'm back up to 4mg of dexamethasone a day to help control the swelling, but my doctor said I need to take myself to hospital if I have any more severe vomiting episodes because it could be quite dangerous if the cystic lesion swells up hugely or bursts.   Will have an MRI in a couple of weeks, when hopefully the swelling will have gone down.   Truffle, a bleed on the brain sounds very scary. I hope they get that checked out quick smart! ... View more

Beautiful photos Babsy! Am out of hospital and waiting to fly home. Have a surgical mask for the return journey. They weren't too keen for me to leave as their protocol is to have 24 hours of temperatures below 38 degrees before you are discharged. Have been under 38 degrees since early this morning so hav been given some oral antibiotics to take until I see my oncologist back home tomorrow.  ... View more

Oh Babsy, I'm sorry to hear about your fall.    I was having a fabulous time on my food and wine adventure in South Australia but I obviously got too confident with reducing my steroid dosage too quickly and yesterday (Sunday) morning I woke up with a severe headache, off balance and vomiting. I had also developed a cough a couple of nights earlier, which then turned into a cold by Saturday night. My chest was very wheezy and crackly during the night and I had a temperature of 38.5 degrees by Sunday morning.    So I took myself to the emergency department at a nearby hospital and I ended up getting admitted. They did a chest X-ray that showed some opacity on my right lung that looked like the start of pneumonia. So I'm getting antibiotics and fluids. And I've been given dexamethasone intravenously as I had kept throwing my tablets up. So this has been an unexpected detour on my holiday but it was going great before that.    Am hoping they will let me out of hospital today so I can catch my plane home as planned this afternoon.    Here are some pics from the last couple of days (before hospital).    Marnster https://lifeistooshorttoskipdessert.com ... View more

Hello all   Hope you have an enjoyable weekend ahead of you. I am on a mini break in the Barossa Valley in South Austalia for a gourmet food and wine weekend. It's been lovely so far, but a bit cold. Going ok following the stereotactic radiosurgery. Had a bit of double vision over the past few days and have a bad headache this morning that I don't think is related to drinking too much wine yesterday!   Truffle, you keep eating those sweets! Why deprive yourself? Enjoy life. On that note, I thought I'd let you know about a blog I've just started writing about my experiences. It's called Life is too short to skip dessert. Words I live by!   Here are the links to the blog and my Facebook page if you are interested in following it or sharing it with others.    https://lifeistooshorttoskipdessert.com https://www.facebook.com/lifeistooshorttoskipdessert/   Cheers   Marnster     ... View more