Cellulitis - your experiences please

I had FEC-T for a large TN tumour, it turned out to be chemo resistant and I had Mx in August 2012 followed by rads and then GemCarbo chemo. After 3 GemCarbo I developed ever increasing pain and some swelling around my Mx site and armpit. This increased every day until I was in agony and had basically lost the use of my arm. I asked for help from BCNs, GP, Chemo nurses and my Onc. Over 4 weeks no-one could diagnose what was wrong. I went to A&E and just got morphine. Then my temp shot up and I was admitted via A&E and finally diagnosed with cellulitis, which had spread all around my arm and trunk. I had IV anti biotics for a week in hosp and am continuing oral at home (1 week so far). There has definitly been an improvement, but it is still quite painful and I still have limited use of my arm. I am on morphine. I have had to stop my chemo and take my chances with cancer. Very fed up.

Has anyone got experience of cellulitis? What treatment did you have? How successful was it?

Thank you ladies, xxx

Bump.

Hi cressida
Sorry you are having a bad time at the minute, it sounds awful for you. I had chemo prior to my mx last year. I had repeated cellulitis during chemo. I was admitted 3 times to have Iv anti biotics. It came back again with rads. So now they have put me on low dose anti biotics for a year to stop it coming back. Are you going to get more anti biotics ? If left untreated it can get very nasty I believe, but I am no expert. At one point in hospital I received 3 different types of anti biotics to get on top of it.

Hi Sassy, thanks for your reply,

How long did they give you IV antibiotics for? I had them for almost a week. I had 2 types. I am now taking 500mg x2 Clarithromycin at home, over 1 week so far, review tomorrow. Did you continue to take ab at home after the IV?. How did they decide that it was treated and stop?

I think my case is already quite nasty and does not seem to be improving. I am trying to find out what sort of treatment is “normal”. I am allergic to penicillin, which is not helping.

Thanks again, x

Hi Cressida, hope this helps in some way xxxx
Ihave suffered from cellulitis since just b4 the end of my chemo Sep2011, tho its contained mainly to my boob
High temp, headache, very sore boob which goes purple. bit like flu symptoms
The only thing to treat this is high anti bio. I have a box of anti bio in the house and take them when an attack is coming on as this stops it in its tracks, tho this time round i had been on anti bio since end of Dec2012 to start of march2013, it takes ages to clear up and makes u feel really poorly.
some people are put on a low dose of anto bio for a year’ to keep it at bay.
iam sure u know about skin care and not getting cuts or nicks to affected side,
tho i never see a cut or nick and i still get it.
BCN said once you have had a dose of cellulitus your more than likely to get it again.
Eat well and take plenty of rest.
take care xxxxx

Thanks garden party,

I too have no obvious break in the skin. Onc thinks it may have been “lurking”, waiting for my immune system to hit rock bottom. I was very aneamic, with very low neuts, on the new chemo. So then it probably took it’s opportunity and set up shop. I am concerned that they will not be able to eradicate it completely so it will always be able to come back whenever I am “low”. How do they decide when to stop abs in your case? Really, you would think cancer was enough, without this rubbish as well.

xxxx

Hi Cassida
surgen at hosp told me to stop taking them as i devloped open sores while on anti bio, up shot was they biopseyed these sores and it turned out to be emtherya .( sorry iam not the worlds greatest speller, so please bear with me) and a week later was put on high bio, fingers crossed its been a week and alls well
i was told by GP. Once anti bio were finished the cellulititus will look like its not getting better, BUT IT IS stick with it and slowly you will see big inprovement.
I also was very Aneamic so had blood transfusion, also had blood infection, that was just b4 cellulitius started,
Ho the joy xxxxx
I think we are just really unlucky
take care xxxxx

Hi
Yes as gardenparty has said once you have had it once it can tend to return. I am not sure exactly what iv anti-biotics I had Cressida but I am not allergic to penicillin so could easily have been penicillin based. It was last year and I have forgot. The last time was in hosp for 12 days. When I was allowed home I still had to go back to the hosp daily for 3 days to continue iv a/biotics then went on to oral a/biotics. It does take ages to go . They may be able to tell you tomorrow when to expect improvements. I saw a specialist who said that it can get in there even without obvious nics or cuts, as I had none. I also became aneamic. Good luck with your review tomorrow xxx

Bump

Quick update. Onc decided to stop anti biotics as she feels it is cured now because it has improved and I don’t have a temp. I fiind this a worry as I didn’t have a temp before until the last minute. It is still red and I am still stiff and in pain. She says what is left is inflammation, not infection. Usually I have confidence in her but my trust in everyone has really taken a knock. Everyone keeps telling me its really unusual to have so long after surgery/rads. In the end the palliative care consultant came to see me and reviewed all the pain stuff and prescribed new meds and will see me again next week.

It’s true that it has improved and my infection markers are dramatically down (although not down to normal). It does hurt less and I can move more but I am still a long way off “normal”. They both observed that I couldn’t get my top off by myself. I know I am being a bit paraniod due to the multiple mistakes I have had to endure. I don’t know how to have confidence in any of them any more. I don’t even think I would believe a second opinion from a different hosp. My chemo has been stopped, so that makes me more anxious, even though I know I can’t have it in this state.

Bumping to see if anyone else has anything to add. The new pain killers are actually working, but I would prefer to sort out the cause of the pain. Especially as they have sedated me so much that I might not notice if the real reason my arm has stopped hurting is because it has actually fallen off.

Bumping up the thread in case anyone has any more experiences to help Cressida. I have to advise if I show any areas of inflammation re cellulitis. Bizarre how our experiences differ so much xxx

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Don’t you just hate it when they look at you kind of sideways, and start a sentence with "it’s really unusual … "

I don’t want to be @#%-ing unusual, and I am NOT making this up! I just want to be bog-standard, run-of-the-mill plain jane, get this treated and let me get on with my life!

… feeling a little grumpy today! :wink:

Hi Cressida,
I had cellulitis on my leg after chemo 1 and had chemo 2 delayed by a week. It started with what looked like an insect bite and quickly developed into 3 large welts and a raised hot red area. I ended up at A&E on a Saturday evening. I don’t usually get temperatures (I have had several illnesses where I should have presented with a temp but haven’t), so I wasn’t admitted (my neutrophil count was 0.2). I was given IV flucloxacillin and 500 mg oral flucloxacillin to take at home for 7 days. On Monday things had got worse and I visited the chemo unit to see the doctors there. They gave me a broad spectrum antibiotic, ciprofloxacin, and sent me home. These antibiotics gave me terrible diarrohea for which I was admitted to hospital on Tuesday. I stayed in hospital for 4 days. I was given more flucloxacillin IV, and also metrodiazole. On release I was given flucloxacillin 1000 mg for 5 days. In all I was on antibiotics for 2 weeks and there was still infection in the wounds at the end of this. It has now cleared up, I have 3 scars to prove it. However, the onslaught of antibiotics has had a toll - I have had thrush and my bowel has not recovered (I think the normal gut flora just cannot cope with the amount of antibiotics and chemo all at once) - I am in a mess!!!
Hope that helps
Alison

Thanks everyone for your replies. I am slowly improving. Very slowly. I can lift my arm slightly above shoulder level. The pain is much better, but I am still off my face on oxycodone.

Alison - how long ago?

It’s shocking how many of us have had to suffer because docs don’t spot it quickly because it is “unusual”.

xxxx

Cressida, I it took around 3 weeks for the cellulitis to clear up. It’s been around a month since I started taking antibiotics - the bowels are just sorting themselves out - but I have had a lot of tablets and creams to help.
Hope you are back to normal soon xx

Hi Cressida, I too had a bout of Cellulitus roughly 4 weeks ago. I had not had chemo since 2010 but it was very painful, boiling hot and a very angry red. I was admitted to hospital and spent 24 hours receiving IV antibiotics and then continued with a course of antibiotics at home. I had two woff work work, my symptoms were very nasty. I thought I had flu symptoms which were related to my Denosumab treatment so although I was aware of a painful red breast I ignored it for a couple of days because I was waiting for the flu like symptoms to pass. To cut a long story short I began being sick and feeling as if I had vertigo. In the end I went to my acute oncology team who diagnosed Cellulitus, I was by then being sick and had lost my peripheral vision which really frightened me. Before this I had never heard of Cellulitus and presumed I had mastitis. I feel much better now but it has taken around three weeks for me to return to my usual self.
Try to stay positive, you will slowly feel better, I just wish someone at the hospital had mentioned this as the symptoms and effects are very nasty indeed. Hugs to you xxx

Hi Cressida,
I am logging on as I am reaching my 5 year anniversaries. My tale is that I had surgery chemo and 6 weeks of rads, after which my breast skin slowly recovered. Rads finished end of Nov 08. I had mild lymphoedema in my breast and arm, but not immediately. Then in June 09, I developed a very sore swollen red hot breast, but I didn’t have a temp or any flu like symptoms. Docs baffled, but had me in for antibiotics for a week, discharging me with a sackful to stake at home. It took 11 stabs to get a line in for the IV ABs, in the end I had a PICC line in which took 3 goes. I am still not convinced that I had cellulitis, and I do still get a sore breast from time to time, but ABs upset my digestive system too so I steer clear as much as I can.
Hope you feel better soon
Kinden xx

Hi Cressida,
I was reading over your thread, as I believe I have cellulitis as well.  I know it’s been years since you posted, and I hope you’re doing well!  I also have a triple negative tumor that seems to be resistant to chemo.  I’ll be having surgery next week (earlier than originally planned) and I’ve just now developed this swollen, red, hot, painful area right overtop of my tumor!  No fever.  Started oral antibiotics today.  Of course, if it’s not bacterial it could be cancer-related, which I’m just hoping is not the case!! 
Ugh!!!