Morning ladies, it sounds like a few of us are struggling at the moment. Luckily for me I have a new grandson, born last night, to perk me up 😊👶🏻 but I fully understand how difficult things are for so many of us. The ones just diagnosed who are mourning the loss of the life they expected to lead and the longer term survivors who worry about how many treatments we have left and how long can we 'dodge the bullet'. It's not easy for us or the family, who support us but who we don't want to upset. This forum is a good place to offload as we do all know how we all feel, something that even our loved ones and friends do not at times. I used to get so resentful about my 'healthy' friends and even now I can be very honest with them especially about me not being able to plan too far in the future. As I got my head around my mets diagnosis I started off planning a few small treats, a walk, a cinema visit, a meal out to lift me up. Once I got past the first 3 monthly scan I started to plan to do a few bigger things, until my next scan, so I planned in 3 monthly chunks. That way OH and I could still go on holiday and have something to look forward to. We have always booked things we know we can cancel ie hotels with free cancellation, flights that can be refunded (found this trick out by using Avios, all collected courtesy of supermarkets etc) so this took the pressure off us, or off me I should say. No need to claim on insurance and only travelling when everything was stable or I felt well. It takes a while to get to this stage and everything at the beginning especially feels so awful. If you are feeling really down, Jellytot (and not surprisingly so as you deal with menopausal side effects as well as the loss you and your husband feel about not being able to have a family) it might be worth having some counselling? It's not for everyone but if you find the right person it might help? I have felt very down, borderline clinically depressed, on at least two occasions but luckily managed to get out of the black hole without needing to take any more tablets than I already do! On both occasions I also lost a lot of weight, like you JT, as I had no interest in food and everything seems so pointless. As with you FF my 2 daughters have grown up with my cancer, which is so sad. They were 14 and 12 when I had my primary but I count myself lucky that I have seen them grow up into 2 beautiful adults, gone through all of their education including university, which I didn't ever expect to be around for. My eldest got married last year and now has just given birth to my grandson. I count my blessings but do know that life is not easy for any of us as the big C word hangs over us all the time, but we get on and don't sweat the small stuff!
ps Nanof3 sorry you also are feeling low, do keep coming on here for support, or PM me as we are in a similar position both treatment wise and length of service!
Morning ladies, it's awful weather here too this morning.
Jelly Tot I am so sorry you are feeling so down at the minute and sending you a big hug. What about planning some nice things again but start off by making plans for a few weeks ahead to begin with until you start feeling stronger. Keep busy if you can jelly tot and gradually you may find things feeling a bit more normal again.
You are so young and have been cheated out of so much and I truly feel for you. Xxxx
Hi Nicky. So pleased to hear you have a new grandchild due. Wonderful news! My daughter was expecting my first grandchild 16 years ago, during which time I was diagnosed with primary breast cancer. Then my second grandchild was born four years later. I thought the cancer had gone and I could enjoy my life again. Then secondaries in my bone were diagnosed in 2009. Two years later my third grandchild was born. She is now 6. I dont know what will to me in the futur but the cancer has certainly made me want to spend as much time as I can with them. As you say it is the uncertainty and now being able to plan for anything. Life is so unfair. My best friend had breast cancer 22 years ago. Just had a lumpectomy and radiotherapy and that was it. She is fine. I am feeling very low at the moment. You are not alone. Xx
Jellyfish, You have reason to mope!! You were given a rotten deal. I know it's hard to plan. Why don't you start with some small things. Maybe just another couple over for a movie, back yard game and a few drinks, maybe a comedy night somewhere, a yard or garage sale, pick pumpkins, craft night with friends. Just throwing out some simple ideas. Hugs FF
Hello All, just checking in.
I'm doing okay side effect wise from my trial drugs.
However, I am having awful hot flushes and night sweats and not sleeping. I'm still struggling to eat and have lost a third of my body weight since May.
Mentally I'm not doing well. I'm so so sad all the time. I'm only 34 and I feel like my life is over. I know I'm on some amazing drugs but surely they are just prolonging the inevitable. I don't have children and I feel robbed of a life I wanted. I don't know what the point is any more. I feel so dreadfully sorry for my wonderful husband. I'm so low all the time and I don't think he knows how to cope (I certainly don't). We were both always such planners and now I don't feel I can plan anything at all. I'm sorry for such a mopey post xx
Nicky, Every special event is even more amazing when we make it to them. I have got to see all three of my kids move out and purchase homes. My son and daughter graduate college. My daughter get married. Oldest son doesn't want to get married. Other son doesn't want to get married but is in the solid relationship. We really like her. They say they are forever just not tiring the knot. I never thought I would see any of this. Every event I make I want more!!
Congrats on the little bundle excitement! Either way football's or ballet shoes will be lots of fun. Jus t remember even if you aren't capable of chasing after the little one, there is plenty of things to do and teach. You can do all the fun parents hate to do, play dough and paint! FF
Yes, Nanof3 I do think that! Occasionally, ie during a long period of stability, I get lulled into a false sense of security but then the bl**dy disease comes back and bites me in the bum! Having said that in 2013 when I had progression to my liver I really did think I had weeks to live. I was struggling so much with heart damage caused by FEC chemo (in 2008) and there was no-one to help deal with both of the life limiting conditions I had. Having been referred to The Brompton cardio-oncology unit saved my life I think. So, I've had at least 4 'extra' years than I expected - even though I want more - as you have said. Basically this disease robs us of our future, even though I have learnt to live in the present it's still tough on me and my family, as it is with all of us and our loved ones. On the plus side I am hoping to welcome our first grandchild into the world any day now - another event I never expected to be involved in when I had my mets diagnosis in 2008. At least this disease teaches us to treasure these moments.
Hi Nicky. No problem. I have been reading up about eribulin. I will mention it on Friday when I am at the hospital. Do tell me, after,living with such a long time with mets , you since 2008 and me since 2009 do you get that dread that time is running out. I so want to be here for my grandchildren. I know I have been blessed to have these years but at 68 I want more! My mum lived till she was 80 and I want some of that. Xx
I realise my reply was a bit worrying for you if you go onto eribulin. I have a friend with secondaries who has been on it a couple of cycles more than me and hasn't used the cold cap and although her hair thinned it's nowhere near as bad as mine - I just got unlucky as its not a chemo that states that you will definitely lose your hair. It is well tolerated and I have found it no worse than Capecitabine which I was on for for about 18 months back in 2013. But good luck with the current treament and hope it keeps working and your bloods don't get too hammered.
Dear Bibi44 and Nicky 08. Thank you for your replies. I feel a bit better about the Paclitaxol now but will certainly mention the Eribulin.
good luck if you do go onto Palbo Nicky. It has now been too bad, just mild fatigue plus of course the hair thinning. At least it saves on having to sit there having IV chemo which is a real bonus. Good luck to everyone changing treatment at the moment. Xx
I don't have any experience of pacitaxel, although have done its 'sister' chemo docetaxel, but that is a bit harsher I think. I have also been told my bone marrow could be getting compromised, maybe its because of the number of chemos etc that you and I must have gone through (I'm over 9 years with bone mets, the last 4 with liver mets as well). I don't have any words of wisdom but in some cases a hormonal can be re visited (or at least I've seen it happen on this forum) so maybe it's not all chemo from here on in. I'm due to come off eribulin soon, because of the bone marrow possibility (it hasnt actually been compromised yet but there's a feeling that it might) and go onto fulvestrant and possibly Palbociclib so it doesnt sound like its going to be any easier on the body and bloods in particular from what you've said. Eribulin is another chemo that might be suggested? It is a lot easier on the body than some and it does seem to be giving good results even if, like you and me, we've had several different treatments already over the years. I cope with it Ok but do need the gcsf injections on 3 days of the cycle and have used the cold cap (yuk!) but still lost about 50% or more of my hair and now have no eyebrows or lashes - great! That has never happened before on any chemo so I'm quite surprised, I've always managed to hang on to them even when I've lost all my head hair. Hope this doesnt worry you but just wanted to add my experience.
Bit quiet round here.
I'm 10 months from finding out I have bone mets. I am well used to the diagnosis now but it really has taken me this long.
Hope you dont mind but one other question to everyone. Do you know what happens after Paclitaxol? In other words, can you revisit a hormonal or will i be on chemo for ever now? Horrible thought. Xx
Hi Carolyn. Hug gratefully accepted!!!!!!!! I know it is a shock having the prospect of 'real' chemo. I had such a rotten time with it 16 years ago when I had my primary. Cant face the thought of it, let alone losing my hair again. Ugh!!!!! Take care. Xxx
I havent posted for ages. Just getting on with life but now I need some advice. PLEASE!!!!!! Into year 8 with mets to bone. I have had all the hormonals, plus Capecitabine and have now been on Palbociclib and Faslodex for 18 months. Feel ok on this, the main problems being fatigue and hair thinning. Since April I have had four blood transfusions due to low red cell count, plus my
white cells always fall at the end of each treatment and have to be helped up again with gcsf injections. The hospital say that because my bone marrow is suffering I will maybe have to go onto Paclitaxol, something I have been dreading. Does anyone have positive experiences of this drug. Also does anyone know of any other reason why the bone marrow could be compromised. I have already gone downmthe leukeamia road. I get blood results next week. Just dont know where to turn. Nanofthreexxxxx. Thank you.
Maldives, The nerve thing sounds painful and annoying!! Wow, for being able fix it in 15 minutes. I would definitely sign up for that! You can do America!! I know your meds are making you tired but I'm sure this nerve pain and hubby not being home is playing on you too. Once your "Rock" is home you will be able to handle it! Depending on where you will be here maybe we could meet up. Wishing you the best with your procedure! Rooting for you!! FF
I have been on herceptin and tamoxifen for nearly 9 year now. I am glad I checked back into this forum although it has been upgraded a lot since I last used it, there is a good chance that I will end up posting stuff in the wrong place. 😀
I should be so lucky ,doing all the things you mention,must be heaven ,even thinking about it makes me smile so thanks for that as have not felt like smiling of late ,so shall now go and just visulise what it would all be like.
Hi Carolyn and all other ladies ,
I have not been on for over a week as last week had herceptin and perjeta treatment ,which knocks me for six anyway then heart scan ,followed by c t scan ,plus radio therapy treatment scan and start radio tomorrow for 5 sessions so have not known whether i was coming or going ,plus not looking forward to r/t at all ,but hey if it helps all will be good ,its because breast is weeping and bleeding outwards so have district nurse calling again,to make sure everything is as it should be ,if honest i am quite scared of this outcome as not opearable and no cure just treatable so keeping everything crossed at once even legs when on loo,i should be so lucky as to have two legs as may manage it then .
take care and love to all
i have not not been on this site for years. I just thought I would check in and say hello again.
I was diagnosed with secondary BC in 2008. I have 2 mets in my spine and one in my hip. It's HER2 and E/R receptive. The disease has remained stable. I worked full time up until last year, I retired in November 2016. It's sad to see that some of the old timers are no longer with us however I am pleased to see that there are some familiar names as well.
Hi Maldives, hope you get some sense out of your onc nurse today. You shouldn't have to find out about such things by reading a letter. I hope all goes well on Saturday we'll all be thinking about you.
Hugs Bon xx
Maldives...try and ignore the 'survival rate' stuff...we dont know how valid the research was and anyway...it wont help to think about that!
hope tomorrow goes well...poor thing you have had a lot of things coming up!
yes I was on Taxol, made me tired...give yourself some slack and rest upxxx
drink loads of water thoxx
Another wasp hater here!
Hope you are all doing as okay as possible.
I cant remember if I said or not but my QT prolongation has gone back to normal so I am currently on my cycle of being off the trial drug. On Friday I start it again, they haven't reduced the dose which has surprised me as I thought they would have done because of my heart last time. I just have to trust they know what they are doing but it is very hard and worrying.
ive not been into work since my diagnosis in May, they have been excellent with no pressure to go back and just asking me to work from home as and when I can. I've decided to be brave and try and go back tomorrow. It's a very small office with only 5 other people in. I usually start at 8am, but having not been up at that time for a while, I'm going to go gently and start at 10am I think x
my apologies for the long absence. I was actually checking in regularly,but found very few people around for a while and ...became a bit busy elsewhere.
however, I think we all worry when one of us disappears.....makes us wonder if they are ok!
i am ok, but like Carolyn and Ff, find it hard to sleep and like ff I have been needing some space from my oh.
I do hope everyone is chugging along nicely?
MariaLouise, am so glad my words were helpful...life is a bit like that isnt it? I find that every so often someone will put something over in a way that really helps me......and of course on this forum we are lucky in having so many lovely ladies to chat with xxx. I hope things are going well for you now, am sure you will get some benefit from the drug too.
I read some research about twentyfive years ago ( must be) by the 'Simontons' drs in the usa who ran groups for terminal patients and found that many of them lived far beyond expectations.....well we are a kind of 'group'
arent we ladies?. And my guess is, this forum also extends lives.
Wow, great photo Bon. A definite plus side to the nights when we lie awake, I must check the sky myself when I'm lying there trying to get back to sleep. A good place to post it as its very uplifting and, as we know, we have a chat on the Bone Mets thread more than any so there's no reason not to share things like this. I have never joined the secondary private part of the forum partly because I think I'd have too many threads to try and track - it's busy enough at times on this part of the forum!
Hope everyone is enjoying the sun this Bank Holday weekend, all the others have been a wash out if I remember correctly. OH and I had a great day at Carfest South on Friday, great weather which helped a lot, a good start to the weekend - now onto clearing out our bedroom and bathroom waiting for the builders to arrive on Tuesday - not so much fun.