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01-18-2013, 12:07 AM
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#1
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Senior Member
Join Date: Sep 2005
Location: British Columbia, Canada
Posts: 198
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tdm1 rash
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
__________________
Dx'd Dec'01 while 6mos preg. with #4. child (30yrsold)Mastectomy/AC chemo/radiation/ Recur:Mar'04 liver mets: 3 taxol/herceptin /liver resection/3 taxol/herceptin. Cured?
Recur: May'05 spine & Hip. New onc
treatment in Mexico Feb'06-Mar-06
back to Mexico June/July '06
Currently on herceptin/Zometa/Femara-recently added navelbine
Switched to arimidex Nov'06
ovaries removed June '07
ca15-3 in May'06 was 102
ca15-3 summer of '07 holding steady at 23!
ca15-3 slowly rising Dec & Jan 36, 38, 41 and Feb was 36
Feb '08 Liver, lung & Brain scan NED... bones are stable with even a couple spots gone. as compared with '06 scans
May '08 ca 15-3 is 55. Treatment is zometa, vinorelbine, herceptin and aromasin.
No signifcant changes.
Feb'09 Started Xeloda with herceptin..no more hormonals
Feb'09-June'09 tumor markers coming down again from 155 to 84
May'09 blood clots in lungs vena cava filter put in..Heparin shots daily for now.
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01-18-2013, 12:31 AM
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#2
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Senior Member
Join Date: Jan 2013
Location: Irvine, CA (Southern CA)
Posts: 414
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Re: tdm1 rash
I've not had chemo but wish you all the rest !!!!
__________________
Julie
Live in Orange County, CA
Diagnosed with DCIS Oct. 2012
Bilateral Dec. 19, 2012
IDC, ER/PR-, Her2+++, Grade 3
Stage IIIa
15.6 cm
4/14 nodes + macrometastases
First thing each morning, I try on my bathing suit. Then, nothing worse can happen the rest of the day.
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01-18-2013, 02:05 AM
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#3
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Senior Member
Join Date: Feb 2007
Location: Paris, France
Posts: 858
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Re: tdm1 rash
I have a mild rash, mostly on the legs, at each round that only lasts 2 days. But it is itchy!
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex
12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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01-18-2013, 07:26 PM
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#4
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Senior Member
Join Date: Nov 2010
Posts: 393
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Re: tdm1 rash
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.
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01-18-2013, 07:50 PM
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#5
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: tdm1 rash
I have exactly what Lorraine has.
Karen
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01-19-2013, 07:43 PM
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#6
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Senior Member
Join Date: Nov 2010
Posts: 393
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Re: tdm1 rash
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.
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01-19-2013, 10:42 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: British Columbia, Canada
Posts: 198
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Re: tdm1 rash
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
__________________
Dx'd Dec'01 while 6mos preg. with #4. child (30yrsold)Mastectomy/AC chemo/radiation/ Recur:Mar'04 liver mets: 3 taxol/herceptin /liver resection/3 taxol/herceptin. Cured?
Recur: May'05 spine & Hip. New onc
treatment in Mexico Feb'06-Mar-06
back to Mexico June/July '06
Currently on herceptin/Zometa/Femara-recently added navelbine
Switched to arimidex Nov'06
ovaries removed June '07
ca15-3 in May'06 was 102
ca15-3 summer of '07 holding steady at 23!
ca15-3 slowly rising Dec & Jan 36, 38, 41 and Feb was 36
Feb '08 Liver, lung & Brain scan NED... bones are stable with even a couple spots gone. as compared with '06 scans
May '08 ca 15-3 is 55. Treatment is zometa, vinorelbine, herceptin and aromasin.
No signifcant changes.
Feb'09 Started Xeloda with herceptin..no more hormonals
Feb'09-June'09 tumor markers coming down again from 155 to 84
May'09 blood clots in lungs vena cava filter put in..Heparin shots daily for now.
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02-19-2013, 01:08 PM
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#8
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Junior Member
Join Date: Jun 2012
Location: Nottingham uk
Posts: 4
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Re: tdm1 rash
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.
__________________
Janine xxxx
smile, smile and keep on smiling :-)
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02-19-2013, 05:24 PM
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#9
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Senior Member
Join Date: Nov 2010
Posts: 393
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Re: tdm1 rash
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.
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02-20-2013, 02:02 AM
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#10
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Junior Member
Join Date: Jun 2012
Location: Nottingham uk
Posts: 4
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Re: tdm1 rash
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.
__________________
Janine xxxx
smile, smile and keep on smiling :-)
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02-20-2013, 11:45 AM
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#11
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Senior Member
Join Date: Nov 2010
Posts: 393
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Re: tdm1 rash
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.
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02-20-2013, 11:40 PM
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#12
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Member
Join Date: Feb 2012
Posts: 7
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Re: tdm1 rash
I have a rash on tdm1. My platelets are fine. Anyone else have this?
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02-21-2013, 07:55 AM
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#13
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Senior Member
Join Date: Nov 2010
Posts: 393
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Re: tdm1 rash
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,
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02-21-2013, 09:43 PM
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#14
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Member
Join Date: Feb 2012
Posts: 7
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Re: tdm1 rash
I have no bruising or nosebleeds
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02-27-2013, 08:26 PM
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#15
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Member
Join Date: Feb 2012
Posts: 7
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Re: tdm1 rash
Is there a cream that helps soothe the rash from tdm1
? Barb
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