Oh my! I so hate knowing that so many of us are having difficult scary times. We all do so well when it's smooth sailing and seem to get on with our lives, but when that boat gets rocked and we get thrown overboard, those life jackets seem sparse. I feel like I didn't get one of the life jackets this time. I got a chunk of a styrofoam cooler to stay afloat, I've been trying to paddle and kick my way back to the boat. Maybe my next scan in October will show me the styrofoam cooler was good enough to get me there. Meanwhile I'm waving to those of you in the boat and if you're out here bobbing around with me, kick on over for a hug! Helen, sending you big hugs!!! FF
Adding my best wishes for Helen to everyone elses! Hoping the Taxol works, Helen, and that you are well enough on Wednesday for your next dose. Hoping it treats you gently! Hugs (gentle ones), Barton.x.
Hi Jam and everyone...still gave a numb lip and chin and waiting for a scan date. Feeling very low at the moment as it could be very serious and not knowing is a bit of a nightmare! Keep prodding my lip and chin every 5 mins to see if it had improved...mad! Tooth still niggiling . See onc next Tues to get cape for the 1st time it feels like I am waiting forever. I have lots of questions but not sure I want the answers! Anyway I am sure you all understand ,oh says we should try to live for today as worrying about tomorrow spoils what we have now, its true but so difficult....hope everyone is doing ok good news please ladies that helps alot x
Thankyou Chocolates for the information regarding Helen lets hope the Taxol works for her.
Sending Helen lots and lots of best wishes via cyber vibes
C good luck with your results on Wednesday I went through what you are going through last week I was convinced they would change my treatment but every thing was stable so I hope it is good news for you. My skin mets vary from being very red and angry to settleing down to reducing in size wish they would go away but no chance of that I have had them 18 month now apparently yhey don't show on the scans so someone said in another thread. Again good luck xxx
Rosie your e/e drugs are everolimus and exemestane I have had 14 courses and still stable but it is hard at the start let us know if you go on this treatment xxx
Love to everyone else xxx
I've attached a link to a thread which may be about the two drugs you mentioned:
I hope this helps!
Hi easytiger, sorry I've not replied sooner, I haven't logged in for a few days. I found that immediately after the 5 radiotherapy blasts, I got slightly worse - but I was told to expect it to do that - and then within 2-3 weeks I was noticing an improvement, this continued over the next few months. Now, a year later, I get the occasional ache or throb in that area, but it's almost unnoticeable. The scans I had later on also showed a "healing response" so they tell me.
I really hope your Mum finds it just as good. Those 5 days were long and scarey (I wasn't allowed to move at all at first, I don't know if your Mum had the same experience). I was very lucky that there were 3 particularly kind and encouraging patients on the same ward, with different cancers, and that helped me alot.
Lots of love to your Mum, my children have been a huge support to me through all this, I'm really proud of them, I bet your Mum is too. If she has any more questions and I can help in any way, let me know.
Orse, so know how you feel re: scan. Last time we 'spoke' on here you were really upbeat about your treatment and it was me who was really concerned that mine wasn't working.and still am. Havent noticed any reduction and am sure i have got more spread. I'm sure if you've seen an improvemnt things must be moving in the right direction. Please let us know how you get on, either on here and/or our skin mets thread. Will be with you in spirit. Love and hugs to you and all others struggling through at the moment.x
Hi it's the type of infection they said I caught. Pretty bad apparently. I'll chat to them Wednesday as I'm pretty gutted that I only lasted 4 weeks on it!
Have missed quite a few days on the forum and was devasated to hear about our lovely Helen. It seems there are a lot of us struggling at the moment but none more than her. She is an absolute diamond and my thoughts and prayers are with her for a good response to the treatment. Thanks Chocs for the updates.
Best wishes to all.xx
HI all - I hope everyone is as well as they can be.
Chocolates - I hope they get you sorted soon; toothache is horrible. I can't offer any advice re dental treatment as before I was allowed Denosumab I had to have 5 teeth out so not enough left to give problems. I had a maxillofacial scan where you stand up and it goes around your head. Have you had this one already? You have to put your front teeth over a little mouthpiece and for hygiene purposes they put a little rubber sheath over it (like a mini condom) .
I'm sure there is mention of dental issues in one of the old threads; perhaps they might put your mind at ease a little bit.
Please could you also send my love and healing thoughts to Helen? I'm so sorry to hear that she is so poorly. I have everything crossed for her that this chemo works its magic for her
Vicky I am on e/e combo what is PCP. I have been on this treatment 12 month now and 4 stables on the CT scan it was very hard to begin with but se get easier as time goes on. There is a thread in the medical and treatment issues and you will find alot of information how other people coped with everolimus and exemestane alot find it difficult because of the se's hope you do ok. Good luck
Hi all I'm back after a4 week trip to hospital! I have been on everolimus and exestame and managed to react badly and pick up a PCP infection which they're associating with me being on the everolimus. Anyone else come across this before?
Disappointed as had only started the drugs about a month ago but they're keeping me on exestame for now. Also disappointed as I always thought my immune system was fairly robust. 😞
I'm new to the forum. My amazing mum was diagnosed only a few months ago with breast cancer, with mets to her spine and lung.
Like yourself, she had spinal compression and was given 5 daily radio therapy sessions straight away as a matter of urgency.
I am so pleased your pain and numbness has gone away - I was wondering, how long roughly after the radiotherapy did it take for you to return almost 100percent back to normal. Thanks x
thank you for the update on Helen. I am so sorry to hear the news. Please let her know my thoughts are with her and I am willing she can cope with the Taxol and be able to go on a trial
Hi everyone, sorry to hear Helen is still suffering praying the chemo will work for her xx
I went to the hosp today to see the facial team re my toothach. The xray didn't show much so he said the fact that my lip and chin have gone numb could indicate cancet spread as 70% of people with this are from breastcancer mets. Hd said he would take my wisdom tooth out but because of denosemub it might take time to heal, but then said if it is cancer it might not heal at all! I wonder if anyone has had this or any dental treatment. I feel so worried have to have a scan of my head...sounds so serious , what next.
Oh, Chocolates, thank you for the update on Helen. So sorry she is suffering at the moment - please give her all my best wishes for the taxol to work, with few or mild se's (preferably none!). Thinking of her. Hugs to Helen, and you, too. Barton.x
Thanks Chocolates for the update on Helen I don't know what we would do without you keeping us in touch with Helen's condition. We really are sending vibes for her to get a little better she has been such a strong voice on this web site and we all love her xxx
I'm sorry to hear that Helen is so poorly. She is such a fighter giving it her all! Janet best of luck with your calcium issue. Never heard if it before this. Sarn, WOW that sounded scary and a bug mess. Take care and feel better soon. My oncologist wanted to biopsy my lung again to recheck how hormone positive I was before I started letrozole because it's been almost 10 years since my cancer was biopsies. I told him NO! I already have a partial collapse of my right lung and in 2012 the rest of the lung collapsed. It did manage to reinflate on its own in a few months. I'm not taking any chances. I told him every time he gives me a new chemo it's a luck of the draw if it works or not, so I'm going to go with the same luck if this hormonal treatment works or not. My original breast cancer in 1995 was ER + and 10 years later eith nets it was the exact same, so I'm going with 10 more years probably hasn't changed. FF