Really need some advice - Taxotere not working

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Hi,

Just wondered if anyone can help with this. Has anyone else heard of Taxotere not working - I thought it was meant to be a lot more toxic than AC? I am Triple Negative - dx Dec 07 and have had six doses of chemo (4x AC and 2x Taxotere), I am due to have another two sessions of Taxotere next month then surgery and rads. After finishing the 4x AC, I had an MRI scan which confirmed that the tumour had shrunk from 3.5cm to 2.cm and was advised by my Oncologist that he would expect to see some further shrinkage from the 4x Taxotere. I was absolutely delighted with the ways things were progressing as I was hoping to have a lumpectomy instead of a full mastectomy. I was examined by my Surgeon last Wednesday and he said that he felt the lump had stopped responding to the chemo and that he was very disappointed that it hadn’t shrunk more considering I have already had 2x Taxotere. I have an appointment to see my Oncologist on Monday, but in the meantime, my imagination is beginning to run wild. I asked the surgeon whether the fact that the lump could have stopped responding to the chemo meant that this affected by long term overall prognosis - he didn’t really want to be drawn into this conversation, but just said that he hoped the next two sessions of Taxotere might have more of a response. I guess having a mastectomy is now a foregone conclusion, but I am more scared of the fact that this tumour is beginning to get hold and doesn’t want to let go without a fight. My affected breast is very painful, swollen and has a burning sensation almost like it is on fire. Any advice would be gratefully received until I see my Onc on Monday.

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Hi
Ihad 4AC my lump was originally 6cms and shrunk to 2 and I was going to have a lumpectomy.Ithen started on Taxotere and was due to have 4 but it was stopped after 3 as it had started to grow again and consultant said he was disappointed that it had not had the desired affect.I had WLE and they took a 4 cm tumour amd 20 lymph nodes.Got results yesterday and none of the nodes were affected and there is a very high cahnce that it will not return He took a quarter of my breast and re-shaped it and has done a really good job.
Hang on in there and keep positive

Mary
x

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hi, I had to have a mastectomy 7 weeks ago as my tumour started growing again, I think that i was on taxol(similar stuff i suppose). It didnt help the fact that i have small breasts and the tumour had grown back to its original size after shrinking. I was just relieved to get rid of the cancer, as it was in two of my lymph nodes so had been active during chemo. There are no guarantees, cancers still have a mind of their own, its just good to get rid, and get my life back. Try not to panic, losing a breast isn’t like losing a limb, and life is very good.My kids don’t see what there is to make a fuss about, and nobody else notices. Hope that you find this reassuring, it honestly isnt as bad as you might think.
Jx

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Mary and J,

Many thanks for your replies. I saw my Onc on Monday who confirmed that the tumour seems to have stopped responding to the Tax. I asked him outright if this affected my long term prognosis and he said that it did. I am in a really scary place at the moment and can only think that I am going to die. I am absolutely dreading having to have a mastectomy and am so adverse to it that I cannot see myself signing the consent form although I know if I don’t sign it, then I will definitely die. I have a three year old daughter and just want to see her grow up, but it seems the odds are against me. I cannot see a future at the moment and I really don’t know how I’m going to live my life feeling scared/frightened every single day that this horrible, horrible disease is going to come back. How do you carry on?

Best wishes to your both.
Jacqui x

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Oh Jacquie,
What a place you are in.You must have your op to give yourself that chance,you can only see the bad side now but I am sure with help and support things will start to look brighter for you.
Try to stay strong for yourself

Mary
xx

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Like you, I found it really hard at first, but in a sense I’ve got used to it. I try not to worry all the time as it will spoil what time I have left, but sometimes it’s easier than others. My advice would be to go for whatever treatment/surgery is offered and then try to concentrate on the here and now and not worry too much about the future. I think you will find it a little easier once you’ve had the surgery (which isn’t nearly as scary as it seems).

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Hi Jacqui

I am sorry to read that you are going through such a difficult time at the moment, I wanted to let you know about tonight’s live chat session which runs from 9pm - 10pm. Live chat is Breast Cancer Care’s online chat facility where you can talk to others in real time. It is facilitated by an expert moderator and a nurse who are on hand to point you to sources of help and information. But for most people, the chance to talk to others in a similar situation is what counts. Simply use the same login details which you do for the forums, The link is:

breastcancercare.org.uk/content.php?page_id=6218

You are also welcome to call our confidential helpline for some one to one support and a ‘listening ear’ from one of our specialist breast care nurses. The number is 0808 800 6000 Mon-Fri 9am-5pm and Sat 9am-2pm.

I hope you find this helpful Jacqui.
Best wishes
Lucy

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Hi Jacqui

Like you I am triple negative.

I’ve had it all the other way round - surgery first (they took aout 1/4 of the breast and 12 nodes) and then 4 XFEC and just had first of 4 x Tax this morning. Very similar condition to Mary - soundslike.

Having read your thread I have just realised that there is no way that I can tell whether any of this treatment is doing anything at all!

So I am just hoping for the best - which is all anyone can do.

They do their best and we do our best - and we all hope for the best.

PS I had a dark patch a couple of weeks ago so I know what it’s like - I was worried the treatment would kill me - have never worried about the cancer killing me. If you read the threads it very common for people to have a “scary patch”. Scared of dying, feeling like they can’t go on with the treatment etc. It’s quite normal as there are so many uncertainties here. Remember that the FEC seems to have been very good for you. Perhaps you could have some more of that instead? I know magz175 was going to have 4xFEC and 4xTax but she couldn’t have the tax as it made her soo ill so she’s having another 2xFEC instead.

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Thanks again to Maryfrod, Silkie, Mabel and Fizbix,

I don’t know if it is just me, but I am absolutely horrified about the thought of having a mastectomy - to me it is complete and utter mutilation and so is breast reconstruction - cutting away healthy tissue and leaving another long, horrible scar just doesn’t bear thinking about. I cannot understand why I feel like this, when other women seem to come to terms with it and realise that the operation ultimately will save their life. It is not the surgery itself - I really don’t mind the surgery as such, it is the type of surgery I will be having - cutting away a piece of me which will be a permaent reminder - how do you get on with your life after such radical surgery? At least chemo is transient (short term) and you will see a light at the end of the tunnell, I cannot see any light after having a mastectomy. I am heading towards a major depression (something along the lines of the post-natal depression I suffered three years ago after having my daughter). I still cannot understand why I had post-natal depression - I had a text book pregnancy - felt really well, pregnancy planned, loving partner, own home, financially secure. I don’t know if having post-natal depression makes you susceptable to having depression in the future - never suffered from it before I got pregnant. I was told all along by surgeon and onc that I would be having a lumpectomy and now five months after having chemo, the situation has now changed and now told that I will need a mastectomy and for some reason I cannot accept it - I don’t know why it is so important to hold on to my breast, but it is to me - I really don’t care what else they do to me - they can to anything they want, but not a mastectomy. Best wishes and love to you all, Jacqui x

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Hi Jaqui

I don’t know if this is going to help or not but it is my opinion.

This whole bc experience is very very difficult - the most difficult thing being the not knowing in the begining and fearing the very worst or next worst or whatever.

Then we finally get some results and a treatment plan. Any plans of any kind are always subject to change - whether it’s building a house or moving house or planning a wedding or anything …

Because of the nature of this “project” we are all very sensitive to changes. If you read the threads there are people who have got terribly upset because they have to have more chemo, others who are very upset becasue they can’t have it, others upset due to treatment delays, new results , lots of things. Given the way we are all trying to cope with a very difficult situation - any change is very upsetting. We all want all the answers day 1 and it;s just not possible. Then when we get some answers we hang onto them for dear life.

Having got your head around everything you are now faced with what can only be desribed as the awful experince of losing a breast. We all have worried about this in the beginning. Some of us have been lucky and held onto them (or part of them) and others have lost them. For you it is a terrible terrible shock to now learn that you are playing a different game to the one you thought you were and you are going to need time to adjust to this. On a change of this scale is is very very normal to get terrribly terribly upset - it’s part of moving on.

In my opnion the most important thing to remember is that they are saving your life. And whilst you obviously want your own breast at least they do reconstruct them these days. It is a big change for you to accept but the most important thing is that it will save your life and you will be there for your family and friends.

Please do not think that because you have had depression before you will have it again. The pevious one was due to having a baby. This can affect many people and has known causes. Although some of the feelings may be the same it does not mean that this is going to turn into a huge depression. You are more than pi**ed off but do not have to go to the depths of despair. It is very very normal to be very very upset at your news - but you will move on and make new plans and cope with it.

I had a very dodgy patch myself 2 weeks ago (mainly due to feeling so ill) but am out of it now. Many people on here go through wobbly stages. It’s all part of the process. How can we all be going through all of this without the occaisional low

PLEASE don’t believe that you are now going to get depressed. You have a new and unexpected challange ahead of you that you can get through. Not only for yourself but also for your family who all love you. Many people have done it before you and many people will do it again. Remember they are saving your life.

I am just so sorry that the goalpaosts have changed for you now - the timing is rotten.

Wishing you the very best of luck.

Hope that this has in some small way helped.

Lots of love and a big hug >>>>> FizBix xxxxxxxxxx

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Hi Jacqui

As Fizbix has mentioned me lol I thought I’d come on and give you my perspective. I am in a slightly different place to you, in that I had my mastectomy first. I was then supposed to have 4 x fec, 20 rads sessions and 4 x taxotere. I managed the 4 fec, and the rads and had 1 taxotere. Unfortunately, it wasn’t so much that the taxotere didn’t work for me - more that it was too harsh for me. As a result of the side effects that I suffered, my onc took the decision to stop it, as there was a very real risk that it would permanently disable me. I was devastated at this decision, as they had led me to believe that Tax was the ‘gold standard’ - and I therefore felt that I was missing something that could do wonders for me.

I was put back onto fec for 2 more sessions (1 still to go).

My initital prognosis after the mastectomy, with no further treatment was 33% - with 4 x fec & 4 x tax this increased to 69% - this change to my treatment plan does affect my prognosis, not by a significant amount, but even so… I still have herceptin to come, and I am banking on that to be the one that works wonders for me now.

I know you will have heard it a million times but believe me you will cope with the operation, and with any further treatment they throw at you - you do, because you have to. I wish you all the very best with the rest of your treatment

Margaret x

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Hi Margaret

I am interested in your treatment plan as it seems similar to that being offered to me. So far I have had a mastectomy and hope to have ANC next week.

Are you able to tell me your original dx. Did you have lymph nodes involved. I too get v depressed at what I see as a poor prognosis but am encouraged to hear that you were given 69%. I too have been told I will have herceptin. But everything changes so much.

I am 56 by the way. Do you think age has anything to do with tax managability?

Starfish x

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Hi Starfish

I was dx last Nov (age 46). Prior to op, was told that surgeon thought lump was 3cm and was of the opinion that they couldn’t get clear margins, thought nodes were involved, and mastectomy was the way to go. I had right mastectomy and full node clearance on 13th Nov. Path reports from this showed that lump was 2.9 cm and that 5 of 11 nodes were affected, I was er & pr neg but her2 positive.

I don’t think that age is a factor with the tax - I think it’s just like all the other various treatments and regimes - people react differently. Unfortunately the tax was just too harsh for me - within 4 days of having it I couldn’t put my feet on the floor, the skin peeled off my feet and hands, I got thrush and then neutropenic sepsis - I think the original plan was to reduce the dosage, but at the end of the day they took the decision to stop it all together and put me back on fec.

Not having the taxane element of the regime as I said does affect my prognosis - I am just keeping my fingers crossed that all is well with my heart and nothing will stop the herceptin!! I now have one more fec to go on 14th May - spoke to the chemo unit today about when the herceptin would start. They advised that it was up to me - as long as it is started within 3 months of the end of chemo - I’ve said I don’t want a break - I just want to keep going and get it over with! So 3 weeks after fec they will arrange muga scan and hopefully herceptin will start then.

Good luck with the anc - and the rest of your treatment.
Margaret x