just came back from clinic. I was hoping to get the go ahead to start with Tax/Gem, but my oncologist said the bloodtest wasn’t good and my liver is struggling. She feels that I might actually shorten my life if I insist on trying it. She also says that as I have had 4 chemos and only the first one worked for a while she can’t see the taxol having a much different result. She did give me more Femara, said they haven’t given up on me yet and that we will now try the Femara and hope that that will stop the liver mets from growing further and even hoping for some shrinkage! Now why didn’t they try that before I had all this chemo? I have to see her again in 6 weeks time after another bloodtest and then she will decide what and if to try something else. Very much looks to me as if there is not much more that can be done, but not willing to give up. My kids need me!
Oh Peggy, so sorry to hear that - let’s hope and pray the Femara gets to work and that your next blood test is a lot better. Keep your fighting spirit going.
Hi Peggy,
did she explain what the blood tests are showing? Have you asked to see another onc , gosh I have a million questions. Firstly I am so sorry that the blood test is not good but you have not been on treatment for several weeks how can leaving you six more make it better? Surely you need to get on chemo now not later, as I said too many questions. I am sure you felt the same. I know they do things a little differently in Belgium but I have a gut feeling that you need something to shrink the little uggers.
We all need to get our heads around this one and work out the best way to buy you more time with your family.
Love Debsxxx
Really sorry you’re having such a tough time. Your question about why not femara earlier may indeed be the key question. I hope femara works for you…I know some women (including those whose tumours have not responded to tamoxifen and arimdex) who have had good response to femara…so hope you do too.
The question about more chemotherapy or not is such a hard one…problem is no one can tell whether a chemo will work until you try it…and your onc may well be right that doing more chemo could shorten rather than improve your life expectancy. I’ve had loads of different chemos which haven’t worked so know how depressing that scenario is.
A second opinion may be ag ood idea…just so you can have a dfferent oncologist’s view.
thank you for your replies. She said that the bloodtest showed the tumours are still growing and that my liver is struggling. As for red and white bloodcells and platelets…they are all good. Her main concern is my liver. Apparently taxol is very heavy on your liver and she thinks that it would do more damage than good. The reason why I have to wait 6 more weeks is because they don’t know yet if the Femara is doing anything as I had only been on that for 3 weeks before having the bloodtest. Tamoxifen didn’t do anything for me, but that is the only one I have tried yet. Don’t ask me why they haven’t tried anything else apart from chemo, I have no idea. I do have an appointment with a different oncologist. Right now I am depressed. After all these chemos which didn’t work, I had put my hopes on the Taxol/gemcatibine. Did anybody have any shrinkage with Femara? Jane what are you on now? And which chemos did you have already which didn’t work? I’m sure I have read the answers to these questions in other threads already but my memory is zilch now. What gets to me is that she wouldn’t even have tried the Femara if I hadn’t insisted on hormone tablets the appointment before this one! And then I only asked because the surgeon who did the mastectomy asked me why I hadn’t tried different hormone tablets as my tumour is oestrogen receptive! Then I did remember he had told me my outlook was good because my tumour was so oestogen receptive! I guess I got hit with so much bad news that I totally forgot about that.
Hi Peggy…I know Femara and Arimidex are very similar and just to let you know my tumour markers were lower on Arimidex than they’ve ever been on chemo. Have you had Xeloda chemo yet?
Take Care.x…x.x
My cancer is triple negative so I haven’t had hormonals…but as I said I know others who’ve had good results with femara. The chemos I’ve had are AC, taxotere, vinorilbine, xeloda, carboplatin, gemcitibine and taxol. I’m currently on vinorilbine for the second time as it worked for a while last year.
I hope you can get some more information from another oncologist…and also find someone whose judgment you can trust.
you need to get in there and see that next oncologist and have a full and frank discusion … as you dont have confidence in this one. When is your appointment? Its no wonder your head is all over the place. It is true that taxol is hard on your liver- but it all depends, there are those of us with quite alot of liver involvement on it - (debs I think i am including you here…). Have you had taxotere and no results from it?
That is right Cathy, I am trying to remember when Paula was refused chemo because her liver needed a kinder chemo and I can’t remember which one is was. Can anyone else remember?
Will look back at old posts see if I can find it.
Thinking of you Peggy.
Love Debsxxx
Peggy - so soprry to hear your news. It’s full of mixed messages and makes me think you are not getting the right care from this oncologist. I would seek another onc’s opinion asap.
I’m also non -hormonal so only know from what I’ve read but many women seem to do well on just hormonals and avoid chemo for some time. I think you need to find out why you missed this hormonal one earlier.
I think for most chemos your liver function has to be at a certain level before you can have them but it’s a bit of a catch 22 situation - if you don’t have chemo then the liver ones might grow and your liver function worsen but if your liver function is bad then it may do you more garm than good. i would have thought they could try you on small doses to test response. The weekly doses of taxol are smal and mine have been reduced from that and I still have shrinkage when on taxol it just grows back quickly whenever I stop!!!
What chemos have you had and what sort of response did you have or were led to believe you had?
I’ve had FEC, taxotere, vineralbine, capecetabine, gemcetabine/carboplatin and now weekly taxol and will try for vineralbine later as well. I always had a good response whilst on them but when i stop they grow back very quickly. the capecetabine started to fail at cycle 8 or 9 as did the gem/carbo. I had 4 three weekly taxotere and 3 weekly FEC, gem/carbo aand ususal course of 2 weeks on and 1 off with capecetabine.
Hope you can see some light at the end of this tunnel - I know you said you don’t want to give up yet - I feel the same so we’ll keep on battling on together shall we Peggy?
Love Kate
Peggy,
So sorry things didn’t go well with at your appointment and that you’re not confident with your oncologist. It’s hard enough that you’re battling this on your own. I would definitely seek a second opinion so that you can be perhaps reassured that you’ve had the best advice or given other options should that not be the case. Of course you want to give yourself the best possible fighting chance and you deserve to be given this. I don’t know anythin about Femara. I’ve been on Arimidex since August but in addition to Taxol/Avastin. Have just been on the Arimidex and Zoladex alone since mid-Nov so have to wait and see if the next scan in Feb is still clear but my oncologist did say that he thinks the Arimidex will have been a factor in my shrinkage but impossible to say how much was due to the chemo. I haven’t yet had liver involvement so I can’t offer advice on this.
I am thinking of you and racking my brain as to what to say but definitely get all the info you possibly can and ask for support in this if you possibly can. You need to feel confident in the care you’re receiving.
Keep fighting.Thinking of you and sending all my very best wishes.
I am really sorry to hear this. It seems your onc needs to provide more info about your liver function tests so that you can understand her rationale and have a clear picture of the state of your liver. Most of my LFTS were high when I started chemo - as you’d expect with widespread liver mets - and they took about three/four months to come down into normal range. Given that you’ve been on all these chemos it’s not surprising your liver has had a rough time (I remember my CT scans showing “stable” liver changes which were due to the chemo, but nothing to worry about).
Debs mentioned a liver-friendlier chemo, it’s Carboplatin which is metabolised by the kidneys, unlike most chemos (Taxol included) which are via the liver.
I really do agree with the others’ about getting that second opinion quickly. You need to have trust in your medics and it seems that you have lost that with your oncologist (quite rightly).
Hi Peggy
As you can see I’ve joined up with this site and as I’ve told you on that other site this Femara may work (for a while anyway - as it did with me). Let’s hope it does and best wishes (as a new person on this site) to everyone else who is struggling out there.
Judith
I had to work through all that happened yesterday at my appointment, so I didn’t come here last evening. I have made an appointment for a second opinion for next Thursday and I’ll let you know what happens then. Meanwhile I want to thank you all so very very much for your help and support.
Debs: She told me the red and white blood cells and the platelets are good, but the liverfunction is really bad and my tumour markers are way up. She decided to try the Femara for a further 6
weeks, to see if my liver function improves or my tumour markers go down and then decide what to do next
Jane: I will ask this other onc why she didn’t give me any hormone treatment other than the Nolvadex earlier. And thank you for giving me some real hope that the hormones might work where
the chemo didn’t
Belinda: I did have Xeloda as my 3rd chemo. No side effects but no results either
Cathy: I had Taxotere 2nd. Felt awful while on that but no results
Kate: The chemo’s I’ve had are FEC, Taxotere, Xeloda and Navelbine. You have been an inspiration to me since I first came here, so yes please, lets keep battling this together
Anne: I want to thank you also for giving me hope that the Femara could work
Ripley: Thank you for the explanation about carboplatin. I will certainly mention this to the onc on Thursday
While I was tossing and turning last night I kept going over and over what the onc had said. Now maybe I am clutching at straws, like you do when you are desperate, and me being the eternal optimist, but I suddenly remembered that she did say…it’s too early to be sure the Femara is working. While I was there and trying to absorb the shock that she wasn’t going to let me try the taxol I hadn’t really paid a lot of attention to that. But does that mean that she thinks it might be doing something? I know there is no real answer to that, but when I asked my Dad if she had really said it like that he said yes she did. I do know that she was very reluctant to give me a prescription for Femara last time and I had to insist on getting some, but this time she thrust 2 prescriptions at me! Now you can take this 2 ways…or she was glad I didn’t yell at her and she just wants to keep me quiet (my Dad’s view, he’s the eternal pessimist) or she did notice something and thinks it’s doing something. Am rambling again, but I don’t know who else to turn to and I know you will understand how I feel.
Hi Peggy…yes it can take a while before you know a hormonal is working…mine took 3 months of stabilised markers before I finally had a huge decrease in markers in month 5…I then went onto to have over 2 years in remission…so 2 prescriptions could be a good sign…I so hope it is…Take Care…x
Hi Peggy,
glad your dad was with you and you can both compare what you heard, Ian often has a different take on what was said at my appointments so it does help. Please dont take this the wrong way but if it was me I would make notes of things I want answers to. I also have my note book with me and I date it so have always been able to refere back to decisions that have been made and questions I have needed answering. It helped no end when I was fighting foe avastin I was told by a Dr I had only asked about avastin a few months earlier my notes showed it had actually been 20months.
Hope you are feeling as well as you can be with all the worry, we are all here in cyberland ready to help if we can.
Love Debsxxx
Yes Peggy
I think you’ve got to wait a couple of months to see if these hormonal therapies are working. The new one I’ve got after Femara (Aromasin - exemestane) I’ve been taking for about 6 weeks now and my "tester tumour " in my neck has not got any bigger but I’m beginning to think it’s got a bit smaller. But I’ll have to wait and see.
I think you should have been given these drugs earlier and certainly before chemo because they work better than Tamoxifen (particularly if you have oestrogen-receptor-positive tumours which I know you have).
Love, Judith x
I am glad that you have the femara and it could really help and it is too early to tell - but I am more glad (if thats english) that you have an appointment with the second onc next thursday , do bring your dad with you to that as well, you really need to talk to this new person, do they need you to bring any notes scans or letters, you can use this time in between to gather up the information (do check that with new person - you want to be sure they are ready and a week isnt really that long if they need info). maybe you have thought of that , maybe not, wish I could do more for all of us!!