Shar

Hi, I had major probs with my toes and went onto a course of Minocycline and that cleared it up. Give it a go, it is worth it. Sharon

Hi Patti, To do nothing in regards to a blood clot would seem a little weird. I kept getting told my breathlessness was due to disease progression, finally after 8 weeks they diagnosed blood clots in my lungs and I also had them in my legs. Hurt like buggery in my legs too. I am now on daily Clexane injections and the pain in my leg has gone and my breathing has improved incredibly. I would not shut up on this one, keep bugging them. I had to and finally something was done. All the best, Sharon

I know exactly how you feel. I have doubled my sleep meds but I still can't sleep. It's terrifying what we are going through and I hate this disease so much. I hate what it has done to my life and those around me. Just gotta get on with it and fight, what else can we do? Hope you found something to watch at 2.30am, maybe at that time of night something rude was on, lol. Just know you are not alone with this, Sharon

Fantastic news Patti. Love that word stable. Well done, Sharon

Hi, I had joint pain while I was on Tarceva, mainly in the hands. An anti inflammatory drug sometimes helped but to be honest I just put up with it. I found it came and went anyway. Sharon

Cindi was such a wonderful woman and she welcomed me with open arms. I regret losing contact with her and feel so much guilt for that. She was kind and caring and never deserved what she went through. I still have all of her emails and I will never forget her. Sharon

Hi Sharon, I tolerated Gemzar well with minimal side effects. My hair thinned a bit and my blood counts suffered a bit. That's about it really, I lived life normally. It worked well on me, it halved my primary tumour, so it was deemed a success. Hope it works well for you too, Sharon

Both of you have been in my thoughts lately and I am so sorry Julia that you have lost your soulmate. What a gutsy bloke he was, he never gave up. You were such a great support to him, this is just so sad. Thinking of you, Sharon

Great news Jamie!!!! Congrats, Sharon

Deanne I have PM'd you and will do what I can.

Hi Guys, I am hoping somebody can help me with suggestions in how to treat a severe rash from Tarceva. Mine is on the scalp and is at the point of being extremely painful. For 12 months I took Minocycline, which I guess I have built up a resistance to, as it no longer benefits me at all. Then we tried Doxycycline to no avail. I just finished a month of Clindamycin which has had no effect either. For now I am back on Minocycline with Prednislone. Not holding out a lot of hope for it working, but fingers crossed. I can tolerate whatever is thrown at me with this rash, but some relief would be fantastic. Thanks, Sharon

Merry Christmas to everyone!!!! I may not post often, but I read regularly and I wish the best for all of you. This disease is hideous and I hope we are getting closer to beating it. So, here I sit at 11.30pm Christmas Eve (remember it is Australia) drinking my Bondi Blonde beer and hoping I will get to see many more of these occasions. To borrow a line from Beth Ditto, "I don't want the world, I only want what I deserve." All the best, Sharon

Sharon South Australia I have a partner and 2 kids aged 13 & 16. Two dogs from the pound where I volunteer once a week. I got one of my dogs when I first started on Tarceva, he is my good luck charm.

I just read this and I am so sorry. You were a great support Ry and I will be thinking of you and the kids. Sharon

Hi, In the 2 and a half years I have been on Tarceva the rash has been quite severe. I was on Minocycline for a year, that stopped working and now I am on Doxycycline. Hopefully that will at least take the edge off. As painful as the rash can be, I celebrate it. This drug has been a miracle for me, I don't even want to think what might have been without it. All the best with it, Sharon

I lost quite a bit of hair last year on Tarceva. The rash was quite severe on my scalp and my hair fell out due to that. Since being on antibiotics my hair has grown back. Very slowly mind you. All the best with it, Sharon

That is just incredible. You do inspire many others. Sharon

Brilliant news!!!! What a milestone. Enjoy the celebration, Sharon

Great news Jamie, I am thrilled!!!!! Sharon

I guess I was just responding to others generalising regarding government run medicare. Yes, we do pay for health care in some way. However since having to go on the Disability Pension over here, my health care has remained the same as when I worked and I obviously pay no tax nor a levy for health care. Our system does work and one thing I am proud of is that everyone gets looked after regardless of income or lack of. I don't have the worry of insurance companies refusing to pay for treatment or having to fight with them to do so. I can't imagine having to go through that and fight this disease at the same time. When Bill Clinton was in office he consulted our government on our health system to see if it could be implemented over there. That's because it does work. We are given the impression over here that if you are a minimum wage worker or on welfare in the States you struggle to get appropriate health care. That's the picture being painted for us. I am more than happy to hear that is incorrect. I hope it is. Sharon

Hi All, Didn't want to start an us versus them debate at all. Every country has it's problems, but I can only go by experience. Nobody in this country needs insurance to get health care. No matter if you are a millionaire or on a pension, care is the same if needed. I have not been billed one cent for all my treatment and have seen the top doctors. If I want private health care, that is my choice. However, during the past 3 years I have received the highest care all for no charge. Not sure what is wrong with that system at all. Don't make judgements about a system that you have no knowledge about and I will try to do the same. As for going to another country for treatment, a lot of the cancer research is being done here in this country. The new cervical cancer vaccine was discovered right here and is offered free of charge to all women 12 - 26 years of age. I don't know of anybody here being referred to any other clinics other than the ones on offer here. I know I don't need to travel anywhere else in the world to better the care I am receiving right here. Aussie, Aussie , Aussie, Oi, Oi, Oi!!!!!!! Sharon

Hi Deanne, This must be very hard for you. I am sorry this is happening, but glad to hear you are willing to fight. I don't think government run medicare is the issue here at all, just a doctor with a way too big ego. I know that the medicare system here in Australia is wonderful, nobody gets refused treatment here at all. After seeing the documentary Sicko, I am glad I live here. I just think you need to have a discussion with the hospital and find out if you can get by this guys ego. Sharon

You have a great fighting spirit Ernie and I'm sure that will make the next treatment successful. On your side always, Sharon

Over the past 26 months I have had to tolerate severe side effects from Tarceva. My mouth is constantly sore, my tongue is split all over, my gums are inflamed and I have to be careful not to eat anything that sets it off. I have just learned to live with all the discomfort, Tarceva is working for me and that's all that matters really. This drug keeps giving me new side effects, I now have huge lumps on the bottom of my legs, but to me it is a sign it is still working it's magic for me. Lowering the dose can help with the rash, in my case it didn't, but giving that a try is worth it. Sharon

I have been on Tarceva now for 26 months and have never had a fever from it. Maybe reducing the dose will help, I'm sure the onc will make that call. Best of luck with it, Sharon