My expereience taking Tarceva

[Deanne Jenkyns]

Adding rash picture, As you can see nose quite swollen.


Deanne
x

[Deanne Jenkyns]

Probably get told off now so I have added a nice one too this was taken in Jan 2007


Deanne
x

[norfolkbirdie]

Jim

Are you taking the steroids? If so they cause lack of sleep until you get used to them or is just from rash discomfort?

[jljenkyns]

Morning Ros

Yes i am taking the steroids but only every other day it is the rash that keeps me awake but against deannes advice i decided because it was so nice yesterday to get myself in the sun with factor 30 suncream and lo and behold my rash has improved by 60% today i do not knowif it is coincidence but i do normally suffer from a sllight rash on my chest and back and every time i go into the sun vanishes.

How is dave today?

jim

[norfolkbirdie]

Morning Jim

I think he feels a bit better just thrown him out of bed into bath!! I am waiting for Doc to call me back as I want to him to see Dave tonight, after scan, to check him over. He is having a week off Tarceva this week and rash is now drying up and crusting over, lovely!!! He has seen your pics and feels for you! We just realised when putting him in bath his chest hair is vanishing, along with his beard and hair not needing cutting as often, must be Tarceva. He never lost hair with Chemo.
Glad yours is improving and I think even getting out into sunshine for a while makes you feel so much better in yourself. I I had 2 great long walks along the beach this weekend and the mixture of sea and sun made me feel stronger and more positive again.
Let you know how we go with Doc.
Ros

[jljenkyns]

Hi Ros

glad to hear dave is feeling a little better, having a week off the tarceva will probably do him good i am not sure if the hair loss is down to the Tarceva though as this is not mentioned in the side effects. Glad to hear you enjoyed the walk it must be hard for you like deanne to have to suffer this probably much more that me and dave.You keep feeling strong and no doubt you will. It amazes me when i see the likes of yourself and deanne and i am sure a lot of other wives who unselfishly give up their complete time and devotion to caring for us it. To say i am proud and grateful would be an understatemnt.

take care

jim x

[shar]

Hi Jimmy,

The only thing that has kept my rash tolerable is Minocycline. I had a raw scalp, nose, mouth etc without taking it, it was unbearable. I still have the rash and there are times it is extremely painful, but nothing like it was.
It has been 2 years for me on Tarceva, it has been nothing short of a miracle.
Hope it works it's magic on you,

Sharon

[jljenkyns]

Hi Sharon

I have not heard of that one but i will let my doctor know the name. At the moment the rash has started to receed it is much better since i stopped using the cream and oddly enough since i lay in the sun. do you still get the rash often or is it just every so often? i can fully appreciate the pain as i have now felt it first hand. i am so glad that this has worked for you for 2 years that is great and the NHS say they have nothing to support the claim of Tarceva.

take care

jim

[norfolkbirdie]

Morning Jim

Hope you are OK back on a lower dose? I forgot to tell you about the split fingers and cracks on heels that Dave gets as well. Does anyone else out there get these?? His fingers get quite bad and the soft pad splits into quite deep cut, again Dermatologist said "use super glue" same as we use in hospital but cheaper! So now he gets the glue out and pushes the cuts together and sticks them back with superglue!!! Yes this side effect has a funny cure but it works and the cuts heal!!!
He had a bad rash on hands as well with 150mgs dose and then they too became the chemical peelers, this doesn't really happen with 100mgs dose, just has some spots on them.

[norfolkbirdie]

All
Well here we are just thinking all is going well with Tarceva and rash under control and manageable, when.... yes you guessed it!! It's back with a vengeance and poor Dave's face is swollen with it and it seems to have marched off the beard and moustache area where it has always been to nose and forehead now!! Seems like it is take a break time again and allow it to subside so it's week off time! His heels are still very split and sore anyone else out there get this and if so suggestions please? Going to post this on US lc site and see if any knowledge from there can help.

Ros

[Deanne Jenkyns]

Hi Ros,
Sorry that the nasty rash is back! Jimmy is having another flare up too they will be able to compare spots of wed Jimmy is still useing calamine lotion and has started using blended T tree oil from superdrug, this seems to be helping too. It's all trial and error is't it Hope it settles soon ros.

Take Care
Deanne
x

[norfolkbirdie]

Thanks Deanne
Dave can't put anything on his face as it's too sore, I am spraying him with suncream, what a sight he looks when we go out as can't rub it in!!! Wearing a large hat as well!
Hiding inside today. Just going to book our train tickets for Weds we may be late there as train arrives into Liverpool st at 12.50. We will meet up with Jimmy and others outside and see you when you get out.
Ros

[Deanne Jenkyns]

See you both then Ros, I will probably need a large drink aterwards!


Deanne
x

[norfolkbirdie]

That thought will keep you calm throughout the hearing!!!

[jljenkyns]

My Diary update.

Week 6 Date 30th April 2007

Stiil pain free , No cough , Breathing still normal now taking
100 mg of Tarceva i will keep on this dose for a while.still using calamine lotion, steroids and anti-hitimanes.



Week 7. Date 5th May 2007

As we left for for a recuperartive holiday with our friends Gareth & Maria from wales i decide to reduced the Tarceva to 75mg having arrived in Cuba on the 6th May still feeling fine although the rash is still quite prominent, I decided that i would take the Tarceva 75mg every other day. This had no adverse effects whatsoever i also decide to try sunbathing with a 25 factor suncream.


Week 8 12th May 2007

The sunshine seems to be doing the trick the rash is subsiding well although this will also be down to the fact that i am only taking 75mg of Tarceva every 2 days. I did have a slight twinge in my right shoulder but after taking a diclofenac the pain has gone. I am still pin free, no cough and Breathing is that good i went Snorkelling and swimming today, I feel like a normal person living a normal life.


Week 9 19th May 2007

Well the second wek into the holiday and still i feel really well we went on a boat trip and again snorkelled and swam breathing still very normal, no pain no cough life is good.



Week 10. 26th May 2007

We are back home now and oddly enough the pain has returned to my right hand shoulder and chest not a great pain but a niggle that lets me know it is there. Having been on a reduced dosage of Tarceva i decided to start on the 150mg. 3 days on 150mg and the rash is starting to appear. 7 days now and the rash is worse so it is back to the calamine lotion and steroids. I have noticed this time that i am suffering with stomach pains and going to the toilet more. Still no cough, Breathing still normal pain barely noticable.


week 11 2nd June 2007

Still on the 150mg of tarceva and the rash is not as bad as the first time but more prominent under the skin the nose seems to be the main area which is most at attack. Breathing still normal , no cough, pain virtually non existent. still using calamine lotion , steroids, anti - histimanes and now vaseline to keep the skin moist.


Week 12 9th JUne 2007


The rash still persists and the itchiness seems to get worse despite the calaimine lotion , steroids etc. I have now been on the 150mg of Tarceva for 20 Days i think it is time to reduce to 100mg of take a Break. Further updat next week

jimmy

[jljenkyns]

Well time to update my Diary

Over the lst 4 weeks i have taken 100mg of tarceva daily the rash is still there but not as prominent i have the occasional flare up every now and again. the biggest difference i have found is the effect on my stomach this is now making me go to the toilet a lot more frequently.

On the more positive side i have now had no painkillers for 5 weeks my breathing is practically normal i do have a slight cough first thing in the morning but i am not sure if it is related.

So all in all life is very normal at the moment

[Trace]

Jimmy,

Your quote "so all in all life is very normal at the moment" Normal do you mean crazy or bonkers ??

Seriously though, we are both so pleased that tarceva is working for you. And after your results today I bet it has given you renewed hope.

Keep fighting you two, so proud of everything you are doing. You are both amazing !!!

Love Trace & Darren. xxx

[jljenkyns]

Hi Trace

Well you know my Normal is "Bonkers" Well i have always had hope as you know but to actually see it in print does give me lift. I knew in myself that things were improving because i had not had to take a painkiller for nrealy 6 weeks now but in all honesty i bnever imagined it would have shrunk by 33%. Just as well i ignored my Oncologist who incidently told me to stop taking it completley because of the RASH!!!! I will have a few words to say to him next week but i know he will say well you are the boss you knew better.Lol in his situation i did anyway once again thanks for you replies and to everyone else who has posted.

jimmy xx

[gavin]

Jim,

Have you guys come across the "novel drug in NSCLC patients"?

www.cancernews.com/category.asp?Cat=23&AID=340

This is the first time (in a lot of internet searching!!) that I've come across it.

Please move the post if it's not in the correct thread.

Cheers,
Gavin.

P.S. Hope you had a good holiday.

[gavin]

HKI-272 is the "novel drug"

Here's the write-up:

www.dfhcc.harvard.edu/news/news/article/122/327/neste/6/

[jljenkyns]

Hi Gavin

A very intersting read it seems this is the way forward it can only be a matter of time before they have the full facts and have a complete treatment lets hope so?

jim

[phillipa]

Very interesting read. Thank you for sharing it Gavin

[dtay]

Thanks Gavin - very interesting.

[wendy]

This really is a wonderful site. reading through last night, i though i'd post my experiences to see if it helps somebody else. Tarceva started end of June 2007-150mg/bad rash within 4 days so week off Tarceva; reduced dose 100mg/rash on face but not as bad and not as sore, later spots appearing anywhere! sores in nose for 4 weeks, spots round eyes (extremely red, sore and itchy), two weeks ago 'manky' toes (spots on sides of nail bed) - a week off Tarceva and they've gone off one foot and improved on the other, very dry skin but all better than the alternative
Thanks Deanne for all the help

[Deanne Jenkyns]

Hi Wendy,
thanks for sharing your experiences with Tarceva the more information the better. When are you due a CT, Jimmy had one last week we expect to get the results on Friday when we meet with onc. Glad things seem to be under control regarding the Rash.


Take care
Deanne
xxx