Hi Pleasant, glad to read you have had a good day out with your family, sometimes getting out of our own four walls can help take your mind off things a little. Hope you didn't mind me commenting on your dose of naproxen (I work in a pharmacy) you tend to never take your dispensing head off!! It's worth querying with your GP/pharmacist. Take care hugs Janette
Hi Janette, I got told I could take them 3x/day (I try to take at breakfast/lunch/dinner-ish (and the stomach settler first thing). I hope to reduce them if/when the injections help. ?!
Thanks so much to you all for your kindness. It's so great to learn about anyone living well with this for more than the 2-5 year statistic. I really need these positives to grasp on to in my current desperate state of mind.
Today the sun's shining and we went to the Fleet Air Arm Museum (the Groupon ticket was about to run out) – you have to do this sort of thing with boys. I can't say I was upbeat, but it was nice to share something together, and at least it got us all away from constantly 'jobbing' at the house.
I'm so lucky in so many ways and do realise and thank the universe. Usually I'd be greatful within but the shock and fear phase of this diagnosis is suffocating. If I could live 10+ years that would be amazing!
Hi Pleasant, sorry to hear your struggling with this horrible disease but you have come to the the right place to sound off. We all understand how you are feeling because we have all been there, you can shout, scream rant and swear (although you will get bleeped 😉) .
It all takes time to absorb (my dx with mets was last March) and I was devastated and didn't think I would see the year out but with the help of my truly wonderful friends on this forum I got stronger and more able to deal with it. Before my treatment plan kicked in I was in terrible pain and had to go to A&E a few times but now I just get a few aches and pains now and then, like you I take naproxen 500mg but you should only be taking them twice daily I was bit concerned to read you are taking 3??? If you need to take anti depressants to help you through it then that's fine you are dealing with a huge shock and they should help take the pressure off.
You take care and be easy on yourself hugs Janette xxxx
Stilhere, I knew that it was an inhibitor, but when I googled and asked if it was a chemo the answer was yes. When I just looked up ibrance it just says it is an inhibitor and nothing about chemo. Guess I will ask my onc.
Pleasant 1, I remember when I first had mets I felt like Scrooge being led up to look in the window watching my family having fun without me. I felt like they weren't my family any more and that I should just disappear and make it easier on every one. It was a few weeks before Christmas and my family was also running around decorating and buying more and more decorations. They were trying to make it my best Christmas and it was obvious they thought it was my last . I wanted to rip everything down. I finally list it and told them to stop. I told them they were making me feel worse. I can't tell you when things changed, but it did get better. I am coming up on 10 years in November. I have lung mets. Please vent when you need,or stick your head in the sand like an ostrich, or celebrate when you get good results. There is no right or wrong way to handle this. There is what works best for you! Hugs! Funnyface
Pleasant1, yes, absolutely you are allowed. We get it, we've been there, we sometimes return to that dark awful place, you aren't alone and you really can let it all out here.
It's a huge thing to take on board and to try to get your head round and find a way to deal with and cope with a new and different and unwanted life. As the ohers have said, it will get easoer, you will find a way but it does take time and you have to try not to beat yourelf up about how you are feeling.
Lots of us are on anti=depressents, quite a few have had counselling, take whatever you are offered and feel you can cope with to help you deal with this horrid diagnosis. Keep coming here and share with us.
Rads can really help with pain, though you might initially feel a bit worse with what they call bone flare,but after a few weeks it should have made you much more comfortable. With things like Denosumab (I'm on Zometa whch is similar)and also hormonals they generally say it takes about 3 months before you can see it's working. I have been on Femera since secomdary dx in March 2010 and it has so far kept me stable. I hope that hearing about others living for years after dx will give you some hope, in the mean time I send you love and strength x
Hi pleasant1 you are allowed to let your true feelings out on this site and you will find other ladies who have the same condition as you and have managed to get a number of years through different treatments they will be along to introduce themselves and give you some very good advise. So sending you lots of hugs and love and I hope we see you in the Cyber Cafe to let yourself join the silly crowd and have a cancer free laugh xxx
I haven't posted since before my official confirmation of secondary. It's even more awful than I anticipated: two tumours (10th rib and top of left buttock) bone mets in a few places and a shaddow on my liver. I've been in the pit of dispair for over a month – can't seem to drag myself out of it. Suffering a lot of left-side neck pain too which is bothering my head.
I'm now taking three x 500mg Naproxen, four doses of Paracetamol, sometimes Oromorph and sometimes Diazapan. I've had one Zoladex injection, two weeks ago, to help make me post menopausal. After the next injections I'll begin Letrozole (Femera) instead of Tamoxifen. I'm also having a monthly Dynosab injection for bone mets. I've a radiotherapy meeting next week with a view to treating tumours. I'm told it takes a while for the injections to begin helping with pain but how many months is this likely to be?
I'm considering taking anti-depressants as I just feel so doomed. Sorry but it's currently unbearable, mostly when I stare at my family and grieve for the early loss of everything we've worked for. I've forgotten how to laugh about anything and I look at everything as if it's pointless, have low energy and when I try to do anything I'm mostly in pain - like gardeing or any chores. I feel totally useless on every level.
I'm miserable to be around and everyone's finding it all really difficult to cope with. I'm not Catholic but I feel as if it's all my fault – if not for it returning – for being unable to feel positive and upbeat for my children, and if I wasn't here everyone could get on and enjoy living. All I want is my normal energy, no pain and to be the woman I was before this terrible malady, but that will never be. I'm now feeling guilty for posting this and bringing you all down but I'm sure you've all lived in a similar dread zone at times. Am I allowed to sound off in such a depressing manner on here?
I'm supping a cider now so perhaps there's some hope?! x
Silly me I new letrozole was a hormone and assumed the new drug ibrance was too. It's chemo so I won't be having a chemo break like I thought.
Lynn, I'm soooo pleased for you, that's fantastic new!!! Get yourself a cheeky glass of wine 😉
Hugs Janette xxxxxxx
Edwina, Cape worked for 2 years for me. I had very few side effects. I hope you get a long run. Stillhere, yes I live in the US. I live about an hour west of Philadelphia. I used to chat on here quite a few years ago, then talked on a private group that has dissolved. I have been chatting with Belinda since 2005! I can't believe it's been that many years. Belinda all my blood work was fine. The SOB has made me tired along with the chemo. I think this will be a good break for my body. Did you lose hair with femara? Trying to keep my hair for the wedding. Hugs, FF
Hi Funnyface glad to hear you are getting a new plan now. I had femera for a year with only mild se and it worked great. I am waiting to start a new plan soon ...cape. I feel worried and hopeful at the same time strange! Hope all goes well good luck x
Ok working on POA with oncologist. Gemcitabine has failed after 9 months. My tumors are stable, but the complication I have called ground glass opacity increased. Also there is some fluids in lungs. According to my onc gravitating can cause pneumonia and some rare toxic effect, so I must stop it. He feels my shortness if breath is from the chemo. He is putting me on O2 only when I'm moving around. He thinks my breathing will improve in 6 weeks. The new plan is two drugs. One is letrozole (femera). The other is ibrance (palbociclib). It is a new drug given with femera. I will know in few days if this combo is a definite. Waiting for insurance approval. I only ever had 4 months of Lupron injections and it didn't work. This is the first time since then that I got him to agree to try a hormonal. I have had 9 1/2 years of chemo. If this works it should be a huge break for my body. Hopefully the medications and oxygen will get sorted out in a few days. They brought the wrong O2 equipment today. The oncologist gave them a different order than what he told me. Will be calling him tomorrow. Sorry I have been quiet, I will pick back up once I'm sorted. Just feeling overwhelmed. FF
Hello, edwina - sorry I didn't post a link - don't know how on here! I see others have done the technical bit, though! Excellent. Sorry, still can't do a new paragraph from my tablet, but just wanted to wish everyone else good luck with treatments, se's, etc. Hugs, Barton.x
I second that Belinda, hello Helen and Chocolates 👋👋hope your both okay, I assume Chocolates is busy with end of term stuff?? Helen hope the blitters are not giving you too much pain.
Hugs Janette xxxxxxx
Sorry to her that EE has stopped working for you. I haven't had Cape myself but know lots of women who have got on very well with it, To find the thread Barton was talking about look in the I have secondary breast cancer section there should be a heading for treatments if you click on that you'll then see a list and you should be able to find it there
I think this is the right one
Good luck xx
Hello edwina. For advice about Capecitabine, there is a quite lengthy thread on the Treatments and Medical Issues section in the Secondaries area of the Forum. I am currently enjoying a break from Cap, but all the lovely ladies on there were an amazing help to me when I first starting taking it. Good luck, and best wishes (sorry your current treatment is failing). Hugs, Barton.x
I've been on Cape twice and have found it quite easy. The main side effects for me have been hand/foot (Plantar Plantar?) so you do need to stock up on creams such as Moo Goo or Udderly and use regularly (socks on feet at night help). Other SEs - dry mouth/metallic taste. I work full time with a four hour commute daily, and still manage OK. Obviously as it is chemo you have to be careful and watch out for temperature increases, but I haven't had any real problems.
I took 4 x 500 mg tablets twice a day.
I felt much better on Cape than on hormone treatment such as Tamoxifen or Letrozole and had far more energy.
Hi Edwina, sorry to hear your results were not good, don't know anything about Cape but I'm sure someone on here will be able to give you some advice.
👋👋 quick wave to Helen, hope your okay hun xxx
Hi everyone...well onc rang with my scan results today and after 8 months they have seen more progression so the e/e combo i am on is definitely not working. I have had loads of se with e/e so disappointed and a bit scared! Now going on to cape and would like any advice please ladies. Hope this works for me...when you get bad news you worry nothing will work. Best wishes to everyone x
Hi FF sorry to hear you are going through it at the moment as the other ladies have said your onc will sort you out what treatment is best for you but I wish you all the best for your scan and you will go to the wedding sending you good vibes xxx
Hi Belinda, I'm useless with technology but I phoned and told my son about it, he watched the video and has ordered me the CD said it should come in the post tomorrow, it feels such a special song to me now and makes think of my cyber friends and how strong we all are living with and fighting this ugly disease.
Hugs Janette xxxx
Hi Funnyface, sorry to hear your not feeling too good, hope they can get you sorted soon. Try not to worry about your daughter's wedding I'm sure doc's will have you sorted by then.
Hope everyone is doing okay, my daughter has gone to Maderia with her boyfriend for a week this so thought I would take to task cleaning her bedroom 😉 I put the radio on and the song from Holley Kitchen's video came on it made me feel all funny hearing that song, I'm guna try and buy it I think it's such a strong and powerful song for us ladies to listen to.
Take care ladies Hugs Janette xxxxxxx