Hi Ladies,
Back again! Sorry to post here, but dont know where I belong (regional recurrence). Just need to talk. Dx 2008, superclav node recurrence 2010, 2nd superclav recurrence (2 nodes)Nov 2011. Told that herceptin hadnt worked, chemo clearly hadnt worked, cant have lapatinib (bad reaction), refused new clinical trial as lumps dont show on scans/MRI. No spread elsewhere yet, but Onc has warned it will come. Told 2-3 years prognosis.
Now on chemo tablets (vinorelbeline). 2nd cycle. Nodes clearly not shrinking. This must mean chem not working again! So depressed. (Am seeing counsellor and GP, but they dont have magic!!) Finding it so hard to get a grip after Christmas. Giving up jobs as cant cope with being so unreliable and only part time anyway. Have 6 year old lovely monster and struggling with knowing I wont see him grow up. Find it hard not to make plans for us all. Trying to live in present, but jealous of normal Mums and their futures. We were meant to go to Disneyland in May, but guess that is out now. I know that many in worse situation than me, but I cant seem to get control of myself this time. Cant find peace in the present as so scared. The things I have read give me little hope!
Does anyone have any advice about how to cope especially with little one. Hubbie is lovely and supportive, but an optimist and gets cross with me when I get tearful!
Tanks for letting me splurge, Much Love, Gxx
Hi Gemdancer
I’m so sorry you are in such a bad place right now and also sorry that I can’t really help you. Have you tried the support lines here? They are meant to be really good and maybe just the place for you to offload on as they are BC specific. I hope things get better for you and I’m sorry I can’t offer more support.
Nicky
It sounds like you’re having having a really tough time at the moment. As Nicky has mentioned it might help to talk things through with a trained member of staff on the BCC helpline. Here you can share your feelings and concerns with someone who will offer you a listening ear as well emotional support and practical information. The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.
Gemdancer, no need to apologise: support is what we are here for.
I don’t know which chemos you have had, but a year ago I was devastated to be told that weekly taxol hadn’t worked for me (I have liver and bone mets). Then capecitabine gave me renewed hope. I really hope there will be a good treatment option for you.
Hi Gemdancer, I’m so sorry you’re feeling so down at the moment, but understand why. It may be that the vinorelbine is working, but my understanding is that the tablet chemos can take longer to show any effect, but if its not there are other chemos to try. I am currently on another course of chemo nearly 5 years after being diagnosed with lung mets, and also mourn for the future, and after lots of thought am trying antidepressants as my sleep has ben so bad. I have found counselling helpful, but you’re right, it doesn’t change the shxxty situation we find ourselves in. At the moment, I cope by planning special days/ trips out with my family. Why do you think Disneyland won’t be possible? If it’s because of treatment, i’M sure your team will try to work around you. My one is now very used to me mucking around with appointments, especially during school holidays.
I hope you find some hope and support from the forum. Best wishes, N
With so many things happening, no wonder you are finding it difficult to cope!
Despite my current (3rd) chemo is judged to be working at the moment (had 3 suspicions but we are just going to monitor them for now) following the latest scan, I’m not quite having the same level of positivity as before. I’m really struggling with work (thinking about giving it up) but just don’t really want to give it up (I’m only in my 20s and I need to do something!).
When I spoke to my onc, he suggested me to contact my GP and go on anti-depressant! Sorry, not really keen on that one. I had counselling before, so I might try that again.
I was diagnosed with secondaries over 2.5 years ago and had really good times and bad times. And there doesn’t seem to be a definite reason for it. Sometimes, it just hit me!
My onc is a big promoter of holiday first, treatment second. So if Disneyland is physically do-able, it will do you a world of good to your health and positivity. Go for it! It will be something to keep you going.
I don’t have children, hope some one can shed more light on that.
I remember your posts from the forum a long time ago and am sorry you find yourself in this horrid place again. As I don’t have children, I can’t help you with that but I agree with others and say speak to your onc etc about the hols - lots of us with secondaries sort of re-arrange treatment dates around hols/special trips. My onc and surgeon both seem willing to go along with that.
Re anti-depressants. I have been on low dose prozac for 2.5 yrs now to lessen the side effects of hormone therapy after trying all sorts of other remedies. Didn’t want to take them really but they do keep me more ‘stable’ and I now see taking them as the lesser of 2 evils.
Hope things go better for you and remember to vent your frustrations on here whenever you want.
Following my melt down at Christmas my gp has given me a slightly higher dose of anti depressants and some sleeping tablets. For once I have just taken the drugs. Feel so much better now, I am going to wean myself off the sleepers after my rads have finished on Thursday. If it keeps me wanting to do stuff then bring it on. Over the holiday period I felt truly miserable and unable to cope. Didn’t even want to knit, for those that know me that is truly bad news lol.
Grab any help you can. I am also having counselling.
Hi
I’m sorry to hear you are so low. I too have children, 14,12,3 and 18 months and find it incredibly hard to cope with uncertainty of future especially regarding children.
I was diag 18 m ago secondaries and on 3rd chemo.
I have relented and take anti depressant and a sleeping tablet but have found the sleeping tablets do not work as well and I wake 5 hrs later so trying to come off them. We have only holidayed in uk since diag but would love to go abroad . I think important to have things to look forward to so planning another holiday.
Hi gem
so sorry to hear you are struggling Its totally understandable- you are having a rubbsh time andits only human to be upset with the hand you have been dealt.
I also have secondaries with a little boy + I know all too well, the devastation caused by thinking about the future. Sadly there is no magic wand and we just have to mddle through as best as we can. I also take low dose anti d’s, sleeping tabs when needed. I have tried counselling but it upset me too much talking about it all (!) so I decided to hold back on any further sessions for now.
I find forums like these really useful- chatting to others in the same situation is invaluable. I have down days but mainly try to live life as normal as poss. We try to have lots of trips away + days out so we have things to look forward to.
Try not to dwell on the words of your onc. Mine gave me around 3-6m and that was 16m ago. They don’t have a crystal ball and whilst you are ned, you are ft and well.
If you ever want to chat, pm me. Try and live for the day- it’s not easy I know but with time it does get easier to focus on the here and now and not, what may or may not happen next month/ next year etc.
Big hugs
tina xx
Sorry to hear of your circumstances and understand completely about feeling depressed although I don’t have any children, I was dx from the get go with secondaries to both lungs (they are now tiny and stable) I am on tamoxifen and herceptin which seems to be working at the moment, I did try an anti-depressant to help with the SE of tami being the hot flushes I tried one tablet and had a really bad reaction so stopped them straight away, going to CBT cognitive behavioral therapy which trains your brain into thinking in a different way and helps with depression, I would also recommend going for counseling try talking to someone not connected to you personally, sometimes it is easier to talk to a stranger than to your own family, this forum is a god send all the ladies on here really do understand what its like to have breast cancer and offer a wealth of information and support. I’m still doing radiotherapy at the moment will finish next week but plan on getting back to as normal as possible once this treatment is finished and I’m not at the hospital everyday!! Another option to try is some of the complementary treatments that Macmillan offer in there centers, I go for spiritual healing, reflexology, crystal healing and find them very relaxing and a great natural mood lifter.
As far as going to Disneyland is concerned go and enjoy, live life to the full as much as possible, grab back some of the old you and deny cancer the chance to take this trip away from you, like m1yu has said it gives you something to look forward to and focus on. Seize the day and live for the moment.
Sending you lots of love, light and healing vibes
sarahlousie xxx
Just a short one. I too had supraclavicular mets and chemo worked only a bit. I had rads in Sept 2010 and have been in remission/NED since. Could you talk to your onc. re:rads? I realise it’s very much a lottery and I have been very lucky so far, but, of course, this could change, as it could with anyone. I don’t like the fact that your onc. is giving out dire warnings and future prognosis. That, for a kick-off will depress you immensely. They don’t know what will happen, as the others have said and it’s very unkind to upset their patients in this way. They should be positive and practical.
Sorry you are going through this, love to you and your monster! PM me if you want any info/chat.
Hi Gemdancer - Ive been thinking about you since I first read your post and I send love hugs and lots of sympathy. Im in the fortunate position of not having secondaries yet - though it it something I live in constant fear of. I too,at the time of diagnosis stared into the great abyss - there is no going back from a diagnosis of cancer. However, I have realised that life does carry on - and encouragingly, as evidenced from the many thoughtful people who post their heartening experiences on here, there is definitely hope for a long life even with secondary cancer.
Having no knowledge of what your treatment plan has been or is - all I would say is have you thought about a second opinion? If there is any time to have one I would have thought it was now at this crossroads of treatment options. Referral could be through your GP if you would be more comfortable with this. I would ask for a referral to a regional centre such as The Marsdon or Christies depending the geography of where you live.
There are dozens of ongoing drug trials in progress and I think you need to have a conversation with an Oncologist who is hopefully proactive and more upbeat than your current one.
Oh Gem, I’m so sorry to hear you’re so low, how hard it is living with this wretched disease, how can any of us not feel low at times and especially when you have little ones.
I think India, Nicky, was right about Vin, all I’ve heard about it has put it into the slower to show results chemo group. Capecitabine took about 3 cycles before it showed it was doing much for me and I’m still, at the time of writing this, on Capecitabine nearly 4 years later. I know a lovely lady in the U.S. who has been on Vin for 4 or it might even be 5 years…she has lung mets.
Take Care…with love…xx
Gem,
I’m so sorry. It’s such a sh**ty situation to be in, but there is still hope. You’ve already had lots of brilliant suggestions and support from women who know exactly how you feel, have looked down the barrel of the gun and can tell you that it’s not loaded yet.
I don’t have secondaries, but am on my second regional recurrence (in and behind my sternum and internal mammary nodes going right up the chain to my neck). When asked, my onc told me there is a strong possibility that my cancer will show up elsewhere and become secondaries. In fact, other oncs already consider me to have secondaries. In terms of a time frame, she has never said anything other than there are lots of treatments to try and she’s confident she can give me lots of time. That’s why I’m confident that my onc is making positive, proactive choices for me. I agree that a second opinion could help give you more confidence.
When I had my first recurrence (in or behind the sternum, or in the int. mammary nodes - they still aren’t sure), I was treated with rads which got me NED for 5 years. I agree that you should ask your or another onc about the possibility of rads.
After my second recurrence, I’ve now started Capecitabine (another oral chemo), and will get scanned after four cycles to see whether it’s working. Give yourself and the chemo time to do its job, but if it doesn’t work, there are other options for you to try. Lots of people with secondaries have gone through a number of treatments that haven’t had much impact before finding the one that’s held them stable or even better for a number of years. And there’s absolutely no reason to believe that you can’t join that club, too. Plus, of course, the longer we are stable, the more trials and treatments become available to us.
And if the depression isn’t getting better, perhaps you should think about anti-depressants, in the same way that you take medication to get over a physical illness. At least then you can feel better enough to enjoy time with your family and friends.
I hope you can find some strength in all the messages of support here. Hugs and my very best wishes to you for better times to come,
Angelfalls xx
Hi Gem, just want to stress the advice that Sarahlouise has given you, Re: radiotherapy. Radiotherapy is often regarded by us cancer peeps (and even Oncologists), as the supporting act/poor relation to chemo, but as the Cancer Research site makes clear, Radiotherapy is in fact a very powerful treatment, which in many ways is superior to either chemotherapy or endocrine therapy, in that it is the only treatment capable of completely destroying cancer when delivered at a curative dose.
It seems strange that your medical team have not discussed rads with you. Have they said the position of your particular cancer would make rads unsuitable ?. If so perhaps you could ask them to refer you to an expert in stereotactic radiotherapy (such as Cyberknife or TomoTherapy), which is far more accurate and therefore able to treat more tricky areas.
It’s completely understandable that you feel so depressed. Like all Mums you want to see your children grow up, and with everything you have tried failing you must feel there is no hope. The only advice I can offer is to pursue what Sarahlouise and I have mentioned above, and perhaps join a support group in your area. The thing is, unless they have been through the same experience, it’s difficult for loved one’s to completely understand the complexity of all our various emotions, and that’s where support groups come into their own.
Many thanks ladies for all your support. I feel stroked!!! I have been feeling very alone. My friends are lovely, but they aren’t in this world. I have a very good Onc at an excellent hopsital (very research current), but he is very direct and very scientific and can come across quite gloomy. The prognosis is all I can think of. I’ve had capecetibine, but it is perceived to have failed as I had recurrence a few months after. I think the same thing will happen with Vinorelbeline and know this means the nastier and hair loss chemos will be left. I just think my future years will be gloomy. What sort of Mother will I be? Feel bad that my son has me and not a better Mum!
I cant have rads, because I had them with my primary in 2010. They did all around my neck area and cant have it to same area twice. I did ask and they said no. I might be able to have surgery, but obviously this only gets rid of the immediate problem.
I will think about antidepressants. Had avoided them, but will talk to GP. Wont give up on Disneyland, but have seen how hard it is to get insurance to US and while on Chemo.
Thank you so much for being there. It means so so much!
Love, Gxxx
Its totally understandable- you are having a rubbsh time andits only human to be upset with the hand you have been dealt.