Lymphoedema after Docetaxel,worried!

Hi Just joined today and am interested in any feedback about possibility of developing lymphoedema after having chemo.
I was diagnosed in December 2008,with cancer in right breast.I had a lumpectomy and axillary clearance in January 2009,6/14 nodes were positive.I finished 3 cycles of FEC and 3 cycles of Taxotere 7 weeks ago,had awful side effects with Taxotere,was neutropenic after first cycle and hospitalised with cellulitis and jaw infection.A week after finishing chemo I developed really bad lymphoedema from fingers to shoulder.Mentioned this at CT scan before radiotherapy,which I statred last week and will not have to have radiotherapy on upper chest so as not to make it worse.Have finally been given 1 arm sleeve,after son e-mailed Breast Consultant,increase in size 50%,so not expecting this to be temporary,Macmillan breast care nurse had referred me to Lymphoedema nurse,but didn’t tell me 2 weeks later service had been pulled by PCT,now not sure what will happen

I too feel I developed lymphoedema after taxotere. I finished tax in Nov 08 and yes you’ve guessed it. I was dx with lymphoedema in Dec 08. I too had dreadful side effects on taxotere. I had 4 fec and 4 taxotere. Onc agreed to reduce last dose by 10% which didnt make an awful lot of difference. I had dreadful eczema all over hands and arms which started 7 days after administering. It got gradually worse with each dose. Skin peeled off hands and arms and on right arm (bad side!) was worse. They wont have it that it was the chemo. But I feel it was. I was so ill spent most of 4 doses in bed all time and so exhausted etc etc. I then had 12 rads. including arm pit as it had extrapulated if that is the word and onc looked very grave and said I really had no choice but to have it. I question whether I had too much treatment all round. I was Grade 2 lobular in 6 lymph nodes and this extrapulated thingy. I have read of others with worse dx getting 3 fec and 3 tax. I am also reading of trials on Cancer Research as to whether those who have had a mastectomy and are intermidiate risk need rads at all. But of course only time will tell if I live. But then I could get another cancer from all the chemo and rads I have had (ie unconnected to bc- a different cancer). I am also having Herceptin. I am so exhausted with it all. Wonder if others feel like this.

Hi Caddie (and Hi to you,too Starfish!)

How absolutely biffing awful for you. I had lymphoedema before I had Taxotere last year and it definitely made it worse. It seemed to target all the dodgy drainage areas, including some of my toes!

On the plus side, the futher away I got from the last Taxotere, the more it improved, so perhaps you will see some relief in that way.

If your arm is 50% bigger, then you need a lot more than a single poxy sleeve! Even if there is no lymphoedema service (shame on them), this in no way releases the PCT from treating you. The NICE Guidelines for Early and Locally Advanced Breast Cancer were published this April and mentioned lymphoedema (hooray).

The link to the full guidelines is here:

Here are some useful extracts:

The NICE guidance on ’Improving outcomes in breast cancer manual update’ (NICE 2002)recommended that ‘Cancer networks should agree guidelines for identification and management of lymphoedema’ and that ‘a lymphoedema service, staffed by trained nurses and physiotherapists, should be available for all patients who experience arm swelling or discomfort’.

Ensure that all patients with early breast cancer who develop lymphoedema have rapid access to a specialist lymphoedema service’.

‘Observational evidence suggests that where information is provided to patients on lymphoedema, it is done so by different healthcare professionals, with no apparent dominant group’.
(Cordero et al., 2003; Coward, 1999; Karki et al., 2004 and Yik et al., 2001).

‘RCT evidence suggests that instructed physiotherapy or instructed exercise interventions are associated with improved patient compliance, a better range of arm movement and lower rates of lymphoedema compared to control arms in which patients receive booklets or other education for unsupervised exercise’.
(Beurskens et al., 2007; Box et al., 2002a; Cinar et al.,
2008; Gerber et al., 1992; Lauridsen et al., 2005; Na et al., 1999 and Wang et al., 2005).

(However, it ALSO says

'Although there is an expectation of delivery of these services for breast cancer patients, current provision of lymphoedema services is variable.)

PCTs can fund private lymphoedema treatment if their own is inadequate or non-existent. I’m seething on your behalf - would like a few members of your PCT to spend some time with a lymphoedema arm. Try your GP - he/she may back you in an application for funding for treatment (printing off the guidelines and showing them may help). Or your local hospice may be able to help. Oh, but it’s the last thing you need, isn’t it? To have to struggle and fight for basic help like this.

Take care, both. Do let us know how you get on.