discontinuing taxotere - help needed!

Public Archive
1

I had 45mm grade 3 tumour er+ with 4 out of 13 lymph nodes involved. After surgeries I started chemo. The plan was 4xFEC and 4xTAX. I had no real problems with the FEC but the TAX is killing me - peripheral neuropathy, stomach upset, diaorhea, constipation (both in one day!), sore hands & feet, sore fingernails, fluid retention so bad the soles of my feet swell and every step is agony.

I spoke to my onc last week, having had 3 TAX and asked to stop it. She said it was ok and we discussed rads.

My OH is less than pleased that I’m stopping, and I would really appreciate it if some of you could give me your pathology on this thread and details of chemo treatment. I’ve tried to tell him many people only have 3FEC and 3TAX etc, but feel input from you all would help.

I know I should give myself the best chance possible, and it IS still possible for me to have this last TAX, but I’m in floods of tears at the idea of having to continue any further with this treatment.

Thanks for your help
Westie xx

2

Dear Westie

So sorry you are feeling so upset. I think I noticed a post on another thread from you saying that you wanted your BC nurse to talk to your OH and I hope you can arrange this.

Your OH is probably very scared and thats why giving you a hard time…its probably making you feel really alone and even worse.

With chemotherapy its a case of balancing side effects with the likely benefits. I think it is highly unlikely that taking one less taxotere in your circumstances will make any difference to your chances of recurrence. Ask yur oncologsit to confirm this. Your side effects sound dreadful…and in your circiumstances I would certainly not carry on. Recently I was on a combination of carboplatrin and gemzar for a regional recurrence, and found the combination just too much to take…I could have carried on but I chose to to cut out one of the drugs…and just choosing not to keep on with the planned regime made me feel so much beter. There are no guarantees with cancer treatment and side effects and quality of our lives now matter.

I think you have made the right decsion for you…and hope OH will come to understand this.

very best wishes

Jane

3

Hi Sue.I had my chemo first to try and shrink my lump, which was 6cms, in order to have lumpectomy.My plan was to have 4 AC followed by 4 Taxotere,although the chemo nurses did tell me at the time that the usual is 3 of each.After my AC i could hardly feel anything and when it was measured again it had reduced to 2 cms,so really pleased,I coped really well with AC,but when I started Tax it was a whole new ball game,and I had much the same symptoms as you,plus walking around in slow motion,and my neutrophils dropped so low I had to spend 4 days in hospital on an antibiotic drip.After 3 I noticed that the lump was hardening and it was measured again, and confirmed that it was growing,They decided to cancel the last one,saying it would not make any difference, and took me in for WLE,where a 4cm lump was removed,with clear margins and 21 lymph nodes which were also clear,I am her+.I finished 15 rads at end June,and when I went for a check up they are really pleased with progress,so I feel that the right decision was made for me.Your OH is bound to worry as our families want to know we are getting the best treatment.
Good luck with your decision

Mary
xx

4

Hi Sue

Just to say that I was due 4 x Eip and 4 x Tax but missed last Tax due to inability to produce enough bone marrow and the onc decided that at the end of the day chemo is a poison and in my case the nett effect of another one might not be positive!

Not trying to frighten you but there is a lady on here who ended up in a wheel chair and couldn’t even dress herself for months (hope she’s continuing to get better). If you do a search on “wheelchair” or “wheel chair” then you might find her.

Don’t know how to put this but I know he’s your OH but it’s YOUR body.
good luck - it’s very hard isn;t it ?
love FB xx

5

Hi Sue,
sorry you are having problems with tax.
The treatment that we have to have with this disease is flippin relentless and only those of us that have suffered it can understand. As others have said it is not always possible to complete the treatment plan we all respond differently. I had to come off taxol in May just to give my body time to recover before it gets its next beating!
Some oncs do 3fec 3 tax so maybe by wanting you to do 4 of each it was just an extra precaution.
Get your hubby to look at some of the postings it can help make a big difference for our partners to understand the illness a little better.
Sorry I cant really but of much use on this one but I do believe we have to listen to our body.

Love Debsxxx

6

Hi Sue

I’m 39. Mine was 3.1cm grade 3 and I had 5 out of 7 lymph nodes involved. ER+, PR+, HER-. My plan is 3 fec then 3 tax - I think this is becoming more common whereas it used to be 4 + 4. The FEC was horrid but ok compared to TAX so far - I’ve only had one and have suffered awful side effects, and am still on day 13 - haven’t had a good day yet, so am dreading the rest of the TAX. 3 TAX is often regarded as sufficient, and it sounds to me like you’ve suffered enough.

Good luck whatever you decide.
Kinden
x

7

Hey Westie hunny, I know you were getting it tough on the tax, if onc says it’s ok then good.

I had WLE and re-excision, lump was 2.5x3cm, with 3/10 lymph nodes involved and I am only have 3xFEC and 3xtax.

Seems everywhere is different but my onc is one of the best we have here and since they class my as young at 32 they have done everything to prolong my existance as far as I am aware.

Hope this helps

L
xoxo

8

Hi Westie
I had 13mm grade 3 removed by WLE. Central node was positive so had full clearance but all others clear. I was originally down for 6 FEC but had a bad reaction to the 3rd one so was changed to TAX but still only had 6 in total and others I know who have had treatment where I did all had 6 in total.

I hope your OH can get to grips with you stopping, they wouldn’t agree to it if they felt it was a wrong move.

AJxxx

9

Hi Sue I had 4xFEc and 4xTax and tax has left me with peripheral neuropathy still after 15 months.I ended up in hospital with neutropenia[despite neulasta]after last tax.If your onc agrees I’m sure 3 will be fine.Your OH is just scared that if you dont have them all you are reducing your chances but lots of people only have 3 tax.

10

Westie-
Here is my pathology report. My tumor was 4.5 cm, grade iii, had neo-adjuvant chemo. Scheduled were 4 rounds of AC, adriomycin and cytoxin which I had. Then 4 rounds of Taxotare; however, after two treatments of Tax, my tumor started to grow again. So I had 4 AC, 2 Tax when my surgeon decided and I totally agreed, that we needed to have surgery. So had modifed rad mastectomy. I am now on 7 weeks of radiation, 5 times a week, for 7 weeksm 35 total.
I have had 1 week of them, so 6 more to go and I am done!!!

For me, the chemo was working against me, so stopping it was logical. IN some ways, you need to weigh whether the last Tax chemo treatment will help or hurt you.
The balance is always a fine line between giving us toxins to kill the cancer without hurting the healthy part of us. In your case, your Onc agrees with you that the Tax is hurting you, so you can stop it. I am sure your OH wants to be very sure that you ahve had every treatment possible and is doing this out of love. Perhaps the best thing is for him to talk with your oncologist directly about the numbers, the facts, and get around the fear.

I hope he will be able to see that you have done your “time.”

hugs
Em
xx

11

Dear all,

Many thanks for your input to this thread. It has helped make OH understand where I am coming from, and also that 3tax is not unusual, and that it may be stopped for a number of reasons.

I’m not sure the “battle” is over yet - he’ll speak to my BCN hopefully on Tuesday - I emailed her and asked her to phone him.
You’ve also all helped me be more understanding of where he is coming from - and I do understand, really I do - but I don’t feel I can do it, not even for him!

Thanks once again,
stay well
Westie xx

12

Hi Westie

I was dx in Nov last year, I had 3 cm lump, stage 3, right mastectomy and full node clearance, 5/11 nodes affected, her2 +++ - my chemo regime was 4 x fec/ 4 x tax with 20 rads in the middle.

I haven’t posted for a while, but you may remember my posts about the affect of tax. I had ‘sailed’ through the first 4 fec - well, as well as you can, nothing serious apart from a bit of heartburn and constipation - then had my 20 rads, then started on the tax. I have to say you have done far better than I did - I only managed one!!
After the first tax, I had every side effect you could name - I couldn’t walk because of the pain in my feet (eventually my skin literally peeled off both feet, all in one go - massive foot shaped piece of skin came off yukkkkk), I kept dropping things because of peripheral neuropathy in my hands, I was admitted to hospital with neutropenic sepsis and had to have IV antibiotics for 5 days, my finger nails and toe nails broke and fell off ( and I’m now almost 4 months from that ONE tax and they are still not recovered!!) - following this my onc took the decision that the tax should be discontinued - I was gutted at the time, as I felt that Tax was the ‘gold standard’ and that I had failed somehow. I was offered a further 2 x fec instead of the 3 x tax I was due ( could only have 6 x fec in total) - and I was devastated and felt like I was losing out somewhere. Onc assured me this wasn’t the case, and that in my particular area, they had had a large number of women for whom the side effects of tax were so dramatic they outweighed the benefits of continuing treatment.

As I’m a stats person - I had a look at the difference this would make on Adj online and while there was a difference, it wasn’t significant.

I couldn’t have carried on at all - I was a physical and emotional wreck by wk 2 following the first tax.

You have done more than enough having 4 x fec and 3 x tax - whilst I can understand where your OH is coming from (in terms of you getting the best possible treatment for your dx) I think he also has to understand the effects that having that last one would have on you. It really is a case of weighing up the pro’s & cons.

I am currently in a similar situation with Herceptin (but almost in reverse) - I have a very low heart rate, and was advised that I would probably only get the first 2 herceptins and no more because of heart readings, I was given the choice of whether I wanted to even start. I have a bad prognosis in terms of the cancer returning elsewhere, and Onc’s advice was that the risk of heart failure was far outweighed by the benfits of treatment - so I went with it.

Have just had my first heart scan and my reading has gone up! SO here’s to the next 4 treatments…!

Just don’t beat yourself up about your decision…if there’s one thing I’ve learnt along the way, it’s that you have to do what’s right for you…and the only person who really knows what that is - is you!

Margaret x

13

Hi Margaret,

Many thanks for your post. Perhaps if I had taken the option of having rads in the middle I may have coped better, but I fairly bounced through the FEC with minimal side effects and just wanted to get on with the chemo! You have had a really hard time and must be finding life really tough at the moment. Am glad for you that your heart scan was good and have my fingers crossed for your next four herceptins.

I’m not beating myself up - I’m being beaten up by others who want me to continue! Even my parents have accepted my decision, but my OH is finding it tougher. This thread really helped and I’m grateful to everybody for their input.

Life would be so much easier if I had the fingertip control required to tie my headscarves! Have resorted to using matchinig scrunchies to tie the things in place!

Many thanks once again for your post and I wish you all the best
Sue xx

14

Thanks all for your input.

OH pulled a serious emotional blackmail stunt and made me feel so guilty I’m now having the last tax. I think this may knock our marriage a bit, but not badly I hope. I am scared I’ll really resent him for putting me through this. However, have got him to agree that if I get secondaries it’ll all be my decisions. He just feels I have to give myself my best shot at ensuring I don’t get secondaries. He reckons I’ll feel right as rain a couple of weeks after the last tax - I quickly corrected him - it’ll take months and I know it.

I can’t believe he’s doing this to me.

Thanks anyway
Sue xx

15

Sue

I dont know what to say except to send big hugs and wish you luck with the last one. It is so hard knowing what to do for best but we will all be with you in spirit for the last one and will hold hands together.

AJxxx

PS - How many sleeps to the Lakes LOL!!

16

AJ - apparently 249!!!

Thanks for your lovely message of support

Sue xxx

17

Hi Sue

Wishing you a speedy recovery for when you get your last TAX. I am 4 weeks post last TAX and still don’t feel quite normal yet. Fingers crossed time will fly for you

Big Hugs
Anita

18

Westie
I was surprised to read your latest message. It must have been a very hard decision to make and there must be very good reasons why you are reversing your decision.

Therefore, as AJ says, know that we are with you as you walk tenderly down this long road.

many hugs
Emily
xxx

19

Hi Sue,

My lump was 13mm grade 1 with 5/9 nodes involved i had 3 epi, 3 tax and 3 cmf. Last tax was 17 wks a go and to be honest i am still suffering - the grip in my hands is poor and the left finger still really hurts. you have to do what is best for you and a lot of women only have 3 tax.

Good luck and hugs
sukes

20

Hi Sue
Sorry your OH is putting pressure on you, he is probably having your best intrests at heart.

As you know I had 4 FEC 20 Rads then 4 Tax. My last Tax was delaed while I had the bad infection. I did feel alot better pretty soon after my last Tax (but I had already done the Rads) maybe they woud delay every thing by a week or so to give you a break.
In the grand scheme of things after all the drugs youve been filled with one more Tax is a small part of the treatment.
Best of luck with it

Louise xx