I’m so glad you did join here! You are such a strong positive person and I have seen how much you help people. It’s not for nothing they call you wisebird there!
Debs: I do have a notebook with dates etc. But not much more as my onc doesn’t really give me much info, just tells me if it’s good or bad and what she plans to do or not do!
Cathy: my hospital will have to transfer my files to the other oncologist. I did tell them I wanted a second opinion, they answered they would send my files as soon as I gave them a name, which I have done. The surgeon who did the mastectomy actually told me to go see this onc as she has his full trust. So, hopefully I will know more on Thursday. Even if she gives me the same verdict, but an explanation with it I’ll be happy
Just read this thread, so sorry to hear this news and I’ll keep everything crossed Femara works. I’ve been on it a year (tamoxifen before that for one year). I was dx 2 years ago and still not had chemo (not that this helps you) but the hormone treatment has worked so far and I dearly hope this works for you just as well.
I had the 2nd opinion today and walked away, if not reassured, at least feeling a lot better than I did before. This one also was of the opinion that my liver wouldn’t be able to handle another chemo right now, but she did say the bad liver function could be due to me having had 4 chemos since august 2007. The tumours definately have grown all through the chemos. She suggested I keep the Taxol or carboplatin as back up should the hormones not do anything. She was of the opinion that hormones should have been tried in between chemos and said that Nolvadex probably didn’t work because the FEC had put me in the menopause. My tumour is highly oestrogen receptive. A bloodtest could have shown if I was menopausal or not but I have never been tested.
When we got to tumour markers they were not good, but showed that although they had risen from last bloodtest, they had stabilised somewhat or slowed down. This suggests that the Femara will have an effect even though it is too early to know for sure as I had only been taking them for 3 weeks before I had the blood test.
She suggested I wait and see what happens in the next 6 weeks. My liver function might improve while I don’t have chemo and I might be strong enough to have the Taxol then.
This is in a nutshell what happened today. At least I had things explained to me. It still leaves me wondering why my onc didn’t tell me about the tumour markers having stabilised somewhat. But there you go, who can ever understand how these people think.
Thank you all for your support and on we go with the battle!!
Hm Peggy
Baffled as to why you weren’t tried on Femara or something earlier than this. Of course it is mostly for post-meopausal women but at your age that could have been circumvented somewhat. If the tumours are highly oestrogen-receptor positive and you are now menopausal through whatever reason then let’s keep fingers crossed that Femara will put you into some sort of remission. After all you’ve been through it may buy some more time.
Love, Judith x
Glad your’re feeling better. Yes it is odd that you’ve not had the hormonal earlier. Pleased you can get a chemo break. Here’s to femara being your personal wonder drug for a while.
yes I think baffled is the right word here. I’m still wondering if she would have eventually tried hormones if I hadn’t insisted after I spoke to my surgeon. He couldn’t understand why either.
Hi jane,
I’ve given up hope for a wonder drug, but at least I have hope now that it could work for a while, give me a few more months. And who knows, if it does, maybe there will be another hormone that does the trick for a few more months. And to be honest, I’m kinda glad I don’t have to have another chemo for a while. It may sound silly but I was upset at the thought of losing my hair (what little I have) yet again.
Peggy - glad you feel reassured. Was wondering how you’d got on today. Hope you can continue with seeing this one as seems much more up to together and hope the hormones work really well for you.
I understand what you mean by the hair loss. This is the 3rd time I’ve lost my hair since april 05 and i was more upset this time. Somehow, it seemed more important to look ‘normal’ this time so wear my wig when I’m out. Usually with the family (my children don’'t like it if I pop out to the bins with a bald head) and for some reason at the hospice!!! Actually, the reason I wear it to the hospice is that all these older men pay me loads of compliments when I’m wearing it so we have a little flirt and they don’t when I go fluffy headed - how sad is that!!!
Hope your liver function improves. Do you feel as if your liver is not functioning properly? I know when I was jaundiced I felt awful and still did for a few weeks after the jaaundice had gone and my LFTs were only a little out. They said my LFTs were normal today but starting to get hot and sweaty when I eat which is what happened when my liver was bad although have a UTI at present and the antibiotics make me feel grotty.
6 weeks must seem like an age away. Hope you have some good things to look forward to and keep posting.
love Kate
Hi Peggy,
Am glad you are feeling better now and a little more reassured. I hope the Femara does its stuff and help you.
I completely understand about being glad not to go back on chemo even if it does us good. I’ve been lucky and never lost my hair (cold cap for 4 months but been without it since September)but I hate the terrible headaches I got with the steroids and the weak feeling I felt generally after chemo and my brain used to struggle to understand certain things too - like it had been overloaded!
Anyway I hope you can enjoy your time without the chemo at the moment. I’m so glad to be off it for the moment but also have been getting frustrated that I still feel so tired and lacking in energy when I want to be up and doing lots of things while I can!
Anyway, take care and hope you have nice weekend with your children.
How well I understand wearing a wig for your family. I never bothered with wigs as I had been told they are itchy and uncomfortable, so I opted for hats etc. I thought my kids wouldn’t really be affected by the way I look, but a while back my youngest, Bakary, who is 3 said…Mummy you won’t cut your hair again will you? So, if there is a next chemo somewhere in the future I will be getting a wig. It also brought back the question about how much to tell my kids. Obviously they know I am sick, there is no way to hide that from them even though I try. But they don’t know how serious it is. Maroke will be 5 on the 29th. Wearing your wig to the hospital doesn’t sound sad to me, lol, compliments are always nice, even if they are by older men. And if they make you feel good then why not? Actually gonna try wearing a wig next time I go, who knows I might get a compliment too!! I don’t feel as if my liver is not functioning properly. The only thing which does happen is that I have to throw up if I eat too many chips for example. But I had that before being dx. I do get dizzy from the Femara, but am hoping this will wear off when I take them longer. The bad LFT worries me more than anything else though. These 6 weeks will be the longest ever. I can only pray that it’s a result from having had all these chemos in such a short time. But then, before I went to see this second onc I wouldn’t even have known it could be because of that!! I hope you’ll soon feel a bit better
Hi Anne, I have been tired since I had the first chemo in August 2007. That was the main side effect with all the chemos. When I mentioned still feeling tired to the 2nd oncologist she said that most people who have or have had cancer feel tired, it can last for years. Not something to look forward to. Also, since I had the Navelbine I keep pulling muscles. She said that is a known side effect of that drug although not many people get it, about 1 in 4. The drug weakens the muscles. I know all about chemo brain!! At one stage I had to fill in a questionnaire for school and I had to list the names of my sisters and brother and their kids. Not only couldn’t I remember the names of 2 nieces and a nephew but I couldn’t put the name of one of my sisters down if my life had depended on it!! Bearing in mind that they come to see me every day…In the end I had to call my Dad to ask him!!
Hi Peggy
gald you now have a plan and are a bit clearer - I find it bad enough understanding a doctor when they are clear - hope it all goes smoothly, Jayne