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HELP!!! Chemo has caused Erythema Multiforme

Tinabug's picture
Tinabug
Posts: 158
Joined: Dec 2009

First of all, thanks to several of you who have sent PM's to check on me. I was waiting to reply hoping things would get better...they aren't getting better. Although, I am praying NONE of you have gone through what has happened to me lately, I am hoping someone has some advice(other than to shoot myself...lol) By the way, this is a LONG story. I have had (3) rounds of taxotere/cytoxan & my last one is scheduled for this Thurs. However, last Monday, I started breaking out in welts on my arms & legs. I called my oncologist & the nurse explained it couldn't be from the chemo so go to my general phys. I went to a doc in the box & was told I was having an allergic reaction to something & given a steroid shot. I go home & I'm feeling better, but later on in the evening I continue to break out in welts. I call the oncologist on call & she told me to take 75mg of Benadryl & an antacid. I do this & sleep like a baby. Tues is normal, until Tues. evening my hands start swelling & itching. Wed. I wake up & the palms of my hands are itching like crazy(I assume I'm going to come into some money), mid-day, I start breaking out especially on my head & under my arms. NO, I haven't changed anything(deo,shampoo,etc..) I start feeling like it's in my throat. I called the oncologist & was told to call 911...they were afraid my throat was closing. Wow, talk about some handsome firemen...my goodness. I get to the ER, & the dr looked at my head & asked about my palms itching & immediately diagnosed me with Erythema Multiforme minor brought on by chemo, stress, or lack of sleep. I have actually had it in my nose since my 2nd round of chemo...it attacks the mucous membranes. I thought what was going on in my nose was just the chemo burning me...little did I know it was the beginning of a living hell. I was given another steroid shot, shot of benadryl, & some more meds. I was told there isn't a cure & no meds for it...I can have it internally, as well as externally. I awoke on Thurs to HELL...it is now on my hands & I have learned the meaning of pain. My hands start itching & it's unbearable, they turn red & feel like they are on fire & nothing gives me relief. They look like they could split open if touched. It feels like I stuck them in a pot of boiling water. I just keep taking benadryl, trying to sleep until it goes away. Friday, I had several really bad reactions, but slept as much as possible. Saturday, my hands were doing better, but my lips started swelling. I've always wanted plump lips...not anymore. Saturday Night, I started having problems with the muscles & joints in my legs. Today, my lips have continued to swell & I have a very hard time walking. I normally have a very high tolerance for pain, but I don't know how much more I can take. My throat hurts & I've had welts on my arm for the last 2 hrs. I am not a dr. & unfortunately, my oncologist was on vaca this week. I do believe I am allergic to taxotere. Needless to say, my entire family is freaking out about whether I should have my last treatment on Thurs. Have any of you experienced anything like I am going through? If so, what did you do? I hate the thought of not getting my last round of my 4 treatments. This Erthema Multiforme also can be major(I have minor)aka Stevens Johnson Syndrome & it scares me as bad as cancer. Thank you in advance & please say a prayer that I can get some relief. I am truly at my wits end from pain & exhaustion. I will call my oncologist very 1st thing in the morning.

BlownAway60's picture
BlownAway60
Posts: 833
Joined: Nov 2009

I will never complain again. You have had more trouble with your chemo than I have ever had. I feel sooooo sorry that you are having all of these problems. I stopped taking Taxotere after my third round because of the side effects and mine where no where near as severe as yours. Talk to your onc as soon as possible. There are lots of different chemos and I am sure there has to be one that won't give you these horrible side effects.

Sending lots of prayers and gentle hugs.

Donna

pattimc
Posts: 432
Joined: Dec 2009

I know exactly how you are feeling, but it sounds like your case is a little worse than mine. I was told in the beginning that it was just stress from the chemo and radiation so I waited a few months itching so bad my body was bruised! I went to a dermatologist and he diagnosed me with dermatitis. Gave me a strong steroid spray and told to take allegra in the a.m. and zyrtec in the p.m. He also told me to start eating Activia. He also told me about a condition called "leaky gut syndrome." I had the Big D really bad from the Taxotere. All of that put a stress on my digestive system and bacteria would leach into my system. Since it was already so compromised it couldn't fight the bacteria, thus the severe itching from dermatitis. Also, all the antibiotics we're on can cause a systemic yeast infection. So first advice is to Google leaky gut syndrome and see if that doesn't fit. When I told my onco about it she said that MANY of her patients are having the Big D from taxotere and she is now advising them to eat Activia.

Then I went to my PCP because I still had welts all over my backside. She said dermatitis, too, but gave me a round of steroids and told me to take Acidophulis. Again, it has something like a billion live bacteria that eats up the bad bacteria in your system. She also gave me an antifungal cream for my welts.

Well, after all of that, I am on the road to better health. I itch once in a while, but it is NOTHING like it was before. I totally know how you are feeling....it's enough to drive a person insane! But, keep after the docs. Between the onco, radiologist, dermatologist and PCP, I think we have it licked. I will continue to eat Activia daily and take my Acidophulis for life. I believe them when they said to you there is no cure. It's up to us to get our digestive systems as strong as it can be to fight the invaders!

I wish you well. Keep us posted!

Patti

MyTurnNow's picture
MyTurnNow
Posts: 2694
Joined: Aug 2009

Tina, I'm so sorry for you. I have not experienced anything like this but please do call your doctor asap. Keep us posted on your progress. I'm hoping you get the relief you need, and very soon. Take care!!

carkris's picture
carkris
Posts: 4523
Joined: Aug 2009

i had the itchy taxol rash all over my face and neck, but nothing like that. perhaps the dermatologist and the added allergy meds is the way to go, plus activia. I use the stony field farm with all the probiotics in it. I think it tastes better.
the rash improved when the taxol ended. I almost didnt finish my last treatment of taxol because of peripheral neuropathy, I might be concerned about the taxol if Ihad that. best too you for comfort and an end to this.

survivorbc09
Posts: 4378
Joined: Jun 2009

I am so sorry Tina. I hope your doctors can help you to get thru this.

ppurdin's picture
ppurdin
Posts: 935
Joined: Jul 2009

Oh I feel so bad for you.After my second treatment of Taxotere I had the same thing happen.I didn,t think i could get through it.My hands looked like I had diped them in hot water.My lips was 3times their size.My feet,fingers itched so bad.and I had huge hives all over.My head was cover,d also,they were huge hives.I went in to my cancer dr.I didn,t get to see her,I seen her nurse.She told me to take benadrle.She wasn,t that concerned.That night it broke out worst.The only thing that would help was my husband kept getting me a wet towel and i would throw on my head.My throat was swelling shut.He took me to the imergency room.They gave me a shot several different medicines in a Iv.I was still itching when I left the hospital.The next morning I went back to my dr. and told them i had to see my Dr.She couln,t beleive it.She gave me a allergy pack they call it.It calmed it down to where I could bare it.They stopped my Chemo,no way would she give it to me after that.I hate to tell you but I have to take an allergy pill every day or I start itching.I take zaretec every day.if i forget i start itching again.That has been since oct.Someone wrotte on here that they had a reaction like this and their Dr. said when they had diarrea with the chemo that it had set off somekind of bateria in their stomach that because of the Chemo could not fight it off and set off the alergic reaction.This is rare to happen my Dr. said.I would stay on my dr.to give you something to help you.I know how misserable it is.If I can help anymore send me a email.I will Pray you get relief. Pat.

Tinabug's picture
Tinabug
Posts: 158
Joined: Dec 2009

Thank you all for your support & prayers. I still haven't talked to my oncologist...I gave up on her after (7) days. However, I went to a dermatologist yesterday & was diagnosed with a case of the hives. He gave me some new meds to take last night & I awoke up this morning feeling normal. My lips & hands aren't swollen & I'm not broken out anywhere. I can honestly say that was the hardest thing I have had to physcially endure. Pat, my dermatologist said I have Urticaria(hives) & Angioedema which is the swelling in my hands & lips. He prescribed Doxepin HCL 25mg...1-3 a night. It is an antihistimine that makes me sleep like a baby. I took (2) last night & woke up this morning with ALL symptoms gone. I was supposed to take (4) claritin this morning, but since I felt good, I didn't want to put anything else in my body. You may want to check with your dr & try out this medicine for itching.

At this point, I am going to take (4) Claritin on Thurs & go in for my last round of chemo. Hopefully, it doesn't kill me. They say what doesn't kill us makes us stronger...I say I am going to be Hercules, Hercules, Hercules!!!!

Love to each & every one of you,

Tina

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

So sorry you were misdiagnosed. Just glad you know now what it is and have help!

BethInAz's picture
BethInAz
Posts: 203
Joined: Jan 2010

My word! That's horrible! I'm so sorry you're having this kind of reaction to the taxotere. I had a reaction to the drug during the infusion - got all red all over and hot - the oncologist finally at the 4th round determined it was reaction to taxotere and not the steroids as he'd hoped. After being pumped full of benadryl and extra steroids, I was able to continue and complete infusions. My oncologist was careful, though, keeping close watch over me because allergic reactions can be problematic. He talked with me about alternative cocktails which I was willing to try if he felt it was necessary but we were able to get through. I'd make sure he knows all about everything you've experienced so he can make a good decision on future treatments.
I pray all goes well and you begin feeling better.
Beth

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

Tina, I am so sorry that this has happened to you. I pray that you will get some relief and feel better soon.

Hugs, Debby

sbmly53
Posts: 1476
Joined: Jan 2010

I am so sorry for all that you have gone through. It seems like everything except your sense of humor has been affected. I have been missing your posts and hoped that you were just busy...

You are in my thoughts and prayers and I, also, am sending gentle hugs your way.

Sue

cindycflynn's picture
cindycflynn
Posts: 1133
Joined: Oct 2009

I'm so sorry for all you've had to endure. I don't know what to say, except I will keep you in my prayers and hope you find some relief from this suffering very soon.

Don't wait to talk to your doctor, have the office track him down or find whoever is filling in while he's out. You should not have to suffer this way.

Gentle Healing Hugz,
Cindy

carkris's picture
carkris
Posts: 4523
Joined: Aug 2009

thinking of you how are you doing? hope its getting better!

Tinabug's picture
Tinabug
Posts: 158
Joined: Dec 2009

My reply is about 6 posts up...I replied to Pat's reply instead of my original one. I'll just blame it on chemo brain.

aztec45's picture
aztec45
Posts: 757
Joined: Jul 2009

I hope you are feeling better. I can't believe your Onc. They told me before I started chemo that I may experience this type of thing and if I did, I was to contact them immediately for treatment. The Onc's office should have treated you immediately before it got to swollen lips and throat and stuff. That kind of BS makes me mad. They should have known better.

But alas...I am glad you are on the road to recovery.

P

Kat11's picture
Kat11
Posts: 1931
Joined: May 2009

I sure hope you are feeling much better.

carkris's picture
carkris
Posts: 4523
Joined: Aug 2009

so glad you are better!!!! kick butt on your last treatment!!

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

Glad you are doing better!

Eil4186's picture
Eil4186
Posts: 967
Joined: Dec 2007

I am so sorry for your pain and discomfort. I wish I knew something to say or do to help. I hope that this horrible ailment will pass soon. I will be praying you'll feel better soon:) Eil

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