FRL

Hi At least I am not the only one on the planet to query this ! Our doctor prescribed, but unfortunately my husband unable to stomach the cottage cheese. I enquired about capsules, but was told waste of time. Had to be the oil mixed with the cheese. I will ask on Friday when we see doc and let you know - unless someone else comes up with answer first. Regards FRL

Hi Lisa My husband is 52 years old and also has mesothelioma, diagnosed Aug 2005. He has no chest pain, just trouble breathing. If I can help - let me know. Regards FRL From Sunny South Africa

Hi Thank you for writing - nothing I have read is available in SA, apart from those approved like Alimta and Cisplatin. We even had to struggle to get Tarceva. But if you a bloodhound, I'm a bullterrier and don't give up. Chat on personal mail - if I can find it.

Hi All Unfortunately Tarceva did not help my husband and we are discontinuing treatment. 2 months of that terrible acne - and just to be told it did nothing to help. But then, I suppose not everyone reacts the same to treatments. Does anyone have any suggestions as to next step to look into ? Regards FRL

Hi LuBelle That is fantastic news. I know what it is like to sit and wait for the results, and how you feel when they are encouraging. If you could bottle whatever it is your dad is doing and send it to me .... my husband alwasy claimed he was not a statistic and has had such a positive attitude, but I think he has lost that this time round. I don't know how to make him fight, he says he does not want to stop treatment and we will get through this, but I wonder if it is not all too much for him. He has put on weight, able to walk around a bit, but struggles to open a bottle of water. Please send your father greetings from SA and I am so happy to hear positive stories. Regards FRL

Hi Randy Thanks for replying. Fighting a losing battle here until NICE (some organisation in the UK who list what is approved and what is not), ans SA seems to follow their lead. We have no problem paying for the drug ourselves if we have to (though somewhat expensive). I will even go to the UK an get a prescription from the oncologist and bring over personally, but don't think it will get to that. I put my husband on 150mg last night. Tired today, but his cough has diminished and a lot drier. His temperature hasn't jumped today as yet, but the sugar is still playing around. That I can cope with. I am able to increase his anti-depressant by 15mg, which will help him emotionally(I think), but one of the side effects is it makes you tired. I am going to ask the pharmacy if they are able to cut the tablet into 3 (making it 50mg per piece), if not, I will give 150mg and 75mg on alternate days until the PET scan and some indication if this drug has had any benefit. Does anyone have any info on Avistan ? I am so glad I found this site, as I said before, this disease is very lonely - as I am sure all cancers are, but usually when you mention you have lung cancer, there is someone out there who can relate as they have a friend or family member who has experienced. But, you mention mesothelioma and people look at you blankly. Thank you so much, I really appreciate the contact. FRL

Hi All We live in South Africa, and let me tell you this is a very lonely disease over here. Oncologists have heard about it, but cerainly no one wants to help with treatment. My husband is 52 years old and has mesothelioma. Been the surgery route, done the chemo, done the radiation, done the tomotherapy (in the UK), and now is trying Tarceva. I have "fired" the negative oncologists, and probably know more about my husband's condition and treatment than most doctors - I have done nothing but read, read, read. Not one single doctor has even so much as recommended multivitamins or supplements, I have had to figure it all out myself, being very careful about what can and can't be taken in conjunction with Tarceva. Even having to check up on doctors that they are not prescribing an antibiotic that is unsuitable for diabetics, when they know full well he is diabetic. Does no one care ?? Anyway, my husband started on 150mg for 25 days, after day 8 the acne started. WOW can this be bad. His high temperatures stopped, his sugar levels stabilized (he is diabetic), and the awful cough disappeared. However, his iron levels very low, has loss of apptite, and very tired. No other side effects. I was told by the specialist treating my husband for his diabetes that the sugar, temp and cough were all a result of the tumour. After day 25 we were not sure if we were able to get authorisation for purchasing in SA, so he went on 150 mg every 2nd day, but luckily it was approved and he went back to full dosage after 4 days. But, day 40 and his acne was so severe, that I insited his dose be reduced. The doctor is of the opinion that the drug is not working anyway, without any scans, but I am not convinced. Since going on 75 mg,(4 days) his cough has returned, he has high temperatures every day, his sugar is spking. BUT the acne has almost cleared completely. Our doctor told us to take 1 x 150 mg every sendond day (being the reduced dosage to 75 mg) .. strange as you just get the tablet cut in half ? There are unforunately no 75mg tablets in the country and would need to be courierd. My logic ....... I have changed NOTHING other than reducing the Tarceva dosage, therefore the drug must've been doing something ??? The pharmaceutical company will not speak to me because I am not a medical practitioner - I could not even get any further information from them in case there was something that I had overlooked in my research on the internet ! Everything I have read has stated "the worse the rash, the better the drug is working", now I know they are talking about nsclc ... but surely it would be the same for mesothelioma ? Or am I just being way too positive ? Any comments would be GREATLY appreciated. I am tired of this very lonely battle trying to prolong my husband's life. PET scan scheduled for this week, but unfortunately there is a 2 week window period between the previous scan and starting on Tarceva, so I am not sure if we are going to get a true reflection. BUT PRAYING the doctor is wrong ! Regards FRL