tdm1 rash

[tammymarie1971]

Hi ladies, maybe this has already been posted about, but how many of you got a rash and what does it look like. I've tried to google any pics but no luck..I'm concerned that what I'm passing off as a rash might be skin mets?? I've got all these little pin point spots around remaining breast, butt,stomach and thighs..not itchy or oozing or anything just there...Anyone else?
Tammy

[IrvineFriend]

I've not had chemo but wish you all the rest !!!!

[michka]

I have a mild rash, mostly on the legs, at each round that only lasts 2 days. But it is itchy!

[phil]

Lorraine has little red dots , a chain of them across upper chest, several inches across, and other red dots, including a red mark on inside of each wrist. others have had it too. we are told they are related to low platelets. they fade a bit when plats get up towards 100,000.

[KDR]

I have exactly what Lorraine has.

Karen

[phil]

Some sites , especially EAPs , have not used t dm-1 long. Fairfax , Va. and Farber , Sloan , have been using t dm-1 for some yrs now, and have seen these red rashes before. I spoke w/ at dm-1 pt in an eap last week who had the rash and her doc didnt know what it was.
low plats need to be watched , consider dietary support for bone marrow like red meat , greens , fruit incl fresh pineapple, ( we use a corer ) , nuts, and sharks liver oil , chlorophyll from health food store. before they hit 100,000 or lower . a brisk 15 ' walk just before labs can raise them 10,000. L went way below 100,000 but has held steady in 70's mostly, for a long time, w/ dose reduction to 3.0 and w/ diet , and some breaks. in her extension study now, she takes breaks of an extra 1-2 weeks , if plats are below 75,000. others in her study can take breaks too. some pts w/ heavy pre-treatment , and / or bone mets weakening marrow, have had to drop out of eap because of low plats.

[tammymarie1971]

Phil, that makes sense as I have been having trouble with most of my labs...liver function, RBC and low plats etc...thank you for sharing your knowledge!!
Tammy

[Neanar]

I too have a rash which has been there for some time, red dots over my chest. My oncologist said you can get a rash with tdm1. I pray that mine isn't the skin mets reappearing :-( on a positive note my skin mets and cancer have resoonded fully to tdm1 and have been on it for 14 months now :-) Hope yours are just a tdm1 rash.

[phil]

Congrats on 14 months of good response. my wife is doing great almost 27 months. she has that rash, a chain of red dots across her upper chest, a few elsewhere, and red dot on inside of wrists . it is due to low platelets, so you should track those no.s . if below 100,000 consider diet changes to boost them, red meat, greens, sharks liver oil from health food store etc.

[Neanar]

Thanks Phil,
In the UK the hospital don't tend to share these numbers with you unless you ask. I have treatment tomorrow so will ask to see results fom Tuesdays bloods :-) 27 months is fab, I so hope I get many more months. Diet was something I was wondering about so may try and make a few changes as I have many side effects with this drug so that may help tackle them.

[phil]

we follow our own version of what's called a" neo -paleo ' diet , eating like a "cavewoman " , top quality red meat , w/ bone and fat , like porterhouse, t -bone. Lorraine is not red meat fan , but eats more , as she started w/ cooked medium , then more med. rare , as she likes top quality taste , . greens like kale, spinach. soak kale in olive oil, w/ dried craisins, fruit slices, almond slices . not bad. fresh pineapple ( we have a corer ), fruits, nuts, . 1,000mg folic acid, sharks liver oil and chlorophyll from health food store. havent gone to juicing yet , but not abad idea. this diet definitely boosts red counts and helps platelets. and I and our son eat healthier than ever too ! we can drop some of this after approval here ( any day ) , when we can cut back carefully on frequency, ( aiming for once a month at 3.0 dose level for awhile , she is at 3.0 as top dose is 3.6 , too strong for lorraine ) and lower dose later this yr to 2.4 as hopefully ned continues. Good luck.

[bhd1]

I have a rash on tdm1. My platelets are fine. Anyone else have this?

[phil]

michka reports that s/e above, do you have any bruising, nosebleeds. someone posted on the tdm-1 side-efects that thier plat count is high, but plats appear to have ben affected nonetheless , as they dont help w/ clotting like they shouls. her s/e was the first i've heard of , but tells you how powerful this drug is , hitting cancer , but also bone marrow. we want to balance cancer-killing with longer term health , adjusting dose / frequency . whenevr This FDA gets around to approving, giving us flexibility , down to the wire. hope they don't sneak it out after 5 PM tomorrow, as they have done w/ other drugs,

[bhd1]

I have no bruising or nosebleeds

[bhd1]

Is there a cream that helps soothe the rash from tdm1
? Barb