It appears my chemo extravasation from 5 years ago went untreated and now I am in the worst pain of my life.I have had to do all the research on my own and will go to a clinic this month to figure out what to do.Can anyone help me with info. or advice?

By Isobel Hawley on Thursday, August 05, 2004 - 11:16 am:

Matt, sorry to hear of your problems - do you have any more details about your extravasation - what drug was involved etc.

By matt turse on Thursday, August 05, 2004 - 06:44 pm:

Isobel Hawley,
i sent you an email.
Thank you,
Matt

By lorelei hawkins on Tuesday, September 21, 2004 - 06:33 pm:

I don't even know if mine is being treated- the nurse changes the dressing on my arm once a week! My chemo extravasation happened 6 weeks ago and I am appalled at the lack of knowledge displayed by the nurses and doctors. No-one seems to know what they are doing or how to treat this type of injury. Mine was epirubicin and the consultant says that it has never happened on her unit before.

By matt turse on Thursday, September 30, 2004 - 09:03 pm:

please dont let it go any further. i just had major surgery from extravasation 5 years ago because no one knew what to do. and now they also found cancer cells in what they removed. i am in bad shape and in major pain at 35 yrs old.

By lorelei on Tuesday, October 05, 2004 - 06:26 pm:

Are you talking to isobel hawley about your problems? This website appears to be maintained by pharmocologists who hopefully know more about what is happening to us than the doctors.
What has actually happened to you? How did they discover your problem was from extravasation? Epirubicin is a chemotherapy drug so I already had breast cancer. The large red area, outside of the possibly ulcerating area, is scar tissue I was told yesterday and also I have been told that cancer cells love scar tissue. I have suddenly turned into an urgent case in that the extravasation site may now become gangrenous and have been told that I should see a professional at least twice a week after them telling me to dress it myself! I seem to have had one of every type of dressing applied, none seem to make much difference except for hiding the horrible wound from sight!
When my arm really hurts very badly it seems to be an infection, hence the fears of gangrene. I am older than you at 47 years old.
My advice to you is keep pestering the doctors to take you seriously and not leave you to get on with it; the pain is untenable and should be seen to. I take voltarol as it is anti-inflammatory as well. Keep in touch

By matt turse on Friday, October 08, 2004 - 05:26 pm:

well my extravasation was inside, my port flipped and leaked chemo in my soft tissue and it necrosed and scarred very bad.finally i found a surgeon who would operate on me,which he did 6 weeks ago. he said it would take 3 surgeries.but they sent my removed tissue to pathology and they found cancer cells so they dont know if this is a relapse or what.now im going thru all of the scans again to see if it is any where else and they will not continue surgery until i am treated for cancer.its a mess and all of a sudden no one knows what happened or what to do.im taking bextra and pain killers.
live strong,
matt

By Andrew Stanley on Monday, October 18, 2004 - 11:56 am:

Dear Matt - Firstly, sorry for not getting back to you earlier - this website is run on a voluntary basis and the summer/ early autumn are always hectic. However, this sounds like a very unfortunate and traumatic injury. I think your diagnosis of an extravasation injury seems completely correct, although it is impossible to say without chatting to you and access to your full clinical records. Although chemotherapy has been implicated in extravasations before,all practitioners should be aware that its administration attracts a relatively increased risk. As you have discovered, there is a considerable knowledge gap between practitioners and there is a huge element of luck as to whether you are seen by someone who firstly recognises the problem and secondly knows what to do. I'm sorry to hear of the devastating news of the cancer cells in your extravasation site. Is this the same tumour that you had chemo for 5 years ago? I am quite confident that the two are unrelated, just awful, but occuring completely by chance. Extravasation injuries are extremely complex and multifactorial, but not a cause of cancer as far as anyone knows to date. Your considerable and ongoing pain is probably because the extravasation has damaged sensitive underlying structures and sadly if not treated at the time, the damage is long-term, as you have seen. Hope it all works out for you. If we can be of any further help, please get back to us. Yours sincerely, Andrew Stanley, Director, National Extravasation Information Service.

By Andrew Stanley on Monday, October 18, 2004 - 12:04 pm:

Dear Lorelei, I think there is no evidence that breast cancer cells are attracted to scar tissure per se, but there is some evidence for sarcomas and hepatomas and breast tumours to reoccur in scars, but only the local ones of the original surgery. More importantly, your rapidly progressing injury: - to be effective, treatment needs to start within hours of the extravasation incident and ideally within 30 minutes. However, as a damage-limitation exercise, DMSO 50% to 99% (Dimethyl Sulphoxide) applied topically as a paint around the area may still help. The existing wound needs debriding - a good tissue viability/leg ulcer healthcare professional should be able to achieve this. If not, surgical debridement with or without reconstruction (some surgeons like to delay reconstructive plastic surgery depending on the site and nature of underlying disease). Anyhow, I hope this is of some use. Best wishes, Andrew Stanley, Director, National Extravasation Information Service.

By Sally Smith on Monday, October 25, 2004 - 06:43 pm:

I had an extravasation episode with Epirubicin 7 weeks ago - my first experience of chemo.....
It occurred in my wrist. My right hand is still quite swollen, I have a red rash around my wrist and it is incredibily painful to do even the most menial tasks. Initial treatment from the nurses on duty was a cold compress and I was given hydro-cortisone cream to take home and apply. Like others, I do not feel confident that the nurses/doctors know how to treat this condition. I have made several visits to the department concerned since the incident and to my G.P. and have, it appears to me, been "fobbed-off" with instructions to rest the area affected and assurances that it will heal itself in time.
However, these assurances are not assuring to me and I am very concerned with the long-term effects to my right hand/wrist.

By lorelei hawkins on Wednesday, October 27, 2004 - 08:46 pm:

Hey Sally lets hope it's our last experience of chemo! read the repy to my e-mail above - on a good day when i talk to someone they agree to do what I ask and on a bad day i get fobbed off with wait and see. I have the prescription for dimethyl sulphoxide but no instructions as to how often to use it. The extravasation site, you will be pleased to hear, after 12 weeks appears to have healed up. It is a little sore but no longer covered by plasters. I am painfree at last! The scar/site is about the ugliest thing I have seen, presumably the plastic surgery department will give me their decision Monday week about debriding the area. I am still confused as to how much epirubicin is in my arm and/or whether it is inactive or disappeared.
How do we contact each other properly by e-mail?
Why were you not referred for plastic surgery immediately? Mine was done within hours at another hospital. Go and see your GP, lay it on the line how bad it is hurting, tell them that you know it should have been flushed out of your arm. Threaten them with a compensation claim, no one took any great notice of me until I did that, but my arm did have surgery....

By lorelei hawkins on Wednesday, October 27, 2004 - 08:51 pm:

Mr Stanley
How come there is not a national policy for hospitals/chemo wards regarding extravasation? My breast care nurse tells me that it is a question of whether each individual unit knows that a particular treatment works. Why does that sound so stupid? If you have the information necessary why do they not consult you? Are you pharmaceutical or a physical doctor? This all sounds as hit and miss as Galens medicine in medieval times.

By sue baxter on Wednesday, April 19, 2006 - 01:07 pm:

Hi All, I had an extravasation whilst being administered Dextrose for a hypoglycaemic event in ED. It was given as a bolus, and despite my fervent requests to stop due to pain and my knowledge of the sensation that it was 'tissueing'.
This was 2 months ago and my right hand is still quite swollen each morning, seems to settle during the day, though remains cold to the touch and quite sore if I use it for gardening or cutting vegetables etc.

The veins on the back of my hand and wrist are palpable, hard and tender.

I had an ultrasound after about 2-3 wks which clearly showed pooling of liquid but was dismissed quite offhandedly by the hand surgeon I was sent to. He wouldn't even look at the ultrasound pictures and made the statement that "it's not as if it was anything toxic!"

I left feeling rather angry and foolish as from the little info.I can find Dextrose is tissue toxic.

I'm just concerned about the length of time this is taking to settle and whether I can do ANYTHING to prevent long term damage.

By charlotte owen on Sunday, August 06, 2006 - 07:45 pm:

hi, i feel a bit silly writing because it is clear that a lot of chemo drugs have been administered and caused extravasation and this is obiously serious but my mum has had huge quantity of flucloxacillin and pen v extravasated into her arm the pain was awful to say the least and now 6 months on she has finally had an mri scan on her arm but nobody wants to know or accept what has happened nurse and drs knowledge is so poor!! is this likely to cause her long term pain as she keeps dropping things and is slowly unable o use her arm as much due to the pain?