nadri Posted June 23, 2004 Share Posted June 23, 2004 Firstly I wanted to apologise for not having posted any messages recently. I have been reading the messages and printing them off for my parents and they have been a tremendous source of comfort and inspiration. Well we got that second opinion, the new oncologist said that in his opinion the cancer is limited to the chest region making it a stage III, the cancer the surgeon saw was in the pleural membrane. This is all of course provisional to the combined PET/CT scan, which the hospital is going to give my Dad next week prior to the start of his Chemotherapy (we are all very nervous about this). The course of chemotherapy is likely to be gemcitabine and cisplatin. The good thing about the new oncologist is his attitude, he is upbeat and says there are many treatment options and he will try anything. He is also very knowledgeable about current research. This is in complete contrast to the first oncologist who to all intense purposes told my Dad to go home there’s nothing we can do for you. I have a couple of things that I would like to ask for your opinions on and I apologise if I am covering old ground. I noticed a number of you are taking Celebrex, my Dad asked his GP to prescribe his some and he has given him 200mg a day, many of you seem to be taking more than this, what dosage should my Dad take? He is going to ring his oncologist and ask as well. Also as regards surgery the Oncologist didn’t seem to think further surgery was necessarily an option as he said that removing the pleural membrane is a massive undertaking and that 9 out of 10 thoracic surgeons will not even try to do this in the UK. I was wondering if surgeons in the US were more likely to undertake such an operation and if anybody had any experience of it. I have put my Dad on a regime of supplements which is growing by the day and currently means he is taking about 30 pills a day is this a lot how many supplements do some of you take? Since my Dad’s diagnosis a little over a month ago we have had so many ups and downs, good news, bad news, devastating news and then a bit of good news again and we are only at the beginning of the journey. Do you ever get used to this roller coaster and how do you manage to stay on an even keel? Thank you for reading my message, I think that you guys are the most supportive group of people I have ever encountered. Thanks Sarah Quote Link to comment Share on other sites More sharing options...
Alisa Posted June 23, 2004 Share Posted June 23, 2004 I'm glad to hear of your second opinion. Sounds like you have an onc willing to try things. I am on 800 mg of celebrex day (400 mg 2x day), as that's what the different trials are using for cancer. As for supplements, I take at least 30 a day (about 12 in the am, 6 mid-day, and 12 again at night). I'm on a lot of different things. Take care. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted June 23, 2004 Share Posted June 23, 2004 Sounds like the second opinion was just what the Doctor ordered. A Doctor's attitude is so important. From my perspective, I will say the roller coaster ride never ends, the highs and lows just get smaller. jim Quote Link to comment Share on other sites More sharing options...
tess Posted June 23, 2004 Share Posted June 23, 2004 My husband is taking 200 mg Celebrex twice a day, I think he needs to start taking it more often. We need to ask the Dr. about that. He was taking a lot of supplements, he got tired of taking so much, so I just give him the multi-vitamins now plus weight gainer and ensure to keep his weight on. Tess Quote Link to comment Share on other sites More sharing options...
nadri Posted June 25, 2004 Author Share Posted June 25, 2004 Thanks for responding to my message, it certainly means a lot to us to have your support. My Dad doesn't want to take more than 400mg of Celebrex but I am worried that this won't be enough as they used 800mg in the clinical trials, does anyone have any thoughts on this. I would really be most grateful to hear people's views. As to the surgery perhaps even in the US removing the pleural membrane isn't done. If anyone has heard of this being done succesfully or knows anyone who has had this done, please could they let me know. Thanks for taking the time to read my message. Sarah Quote Link to comment Share on other sites More sharing options...
ginnyde Posted June 25, 2004 Share Posted June 25, 2004 Sarah, My husband has been on 800mg of Celebrex since last Oct. There do not seem to be any bad effects from the Celebrex. Why is your Dad resistent to the larger dose? Quote Link to comment Share on other sites More sharing options...
karenl Posted June 25, 2004 Share Posted June 25, 2004 Hi Sarah I personally haven't heard of anyone having their pleural membrane removed, but its not an area that I have looked into at all, so I am pretty clueless about it. As for the Celebrex, my mum started taking it about 6 months ago, and I think she is on 400mg (2 X 200mg per day). She has just completed 6 months of chemo, and is doing a whole bunch of other stuff, as well as swallowing loads of tablets. So far, so good. She is basically symptom-free, apart from some minor discomfort in her rib cage. Having a scan on Monday to determine where things are at, and then an anxious wait until Wednesday when she sees the Onc for the results. We remain ever hopeful that Mum can manage this disease as a chronic illness, until such time as that miracle cure comes along!!! The roller coaster ride sure doesn't stop, but you do get used to it! All the best to you and your family. Karen Quote Link to comment Share on other sites More sharing options...
nadri Posted June 25, 2004 Author Share Posted June 25, 2004 Hi Ginny My Dad thinks that as 400 mg is the standard dose for Celebrex taking more than this may have adverse side effects, and that 400 mg should have the same effect anyway. I am trying to show him that many of you are taking Celebrex at 2x the standard dose without any ill effect and this is the optimal dose to take. G-d Bless Quote Link to comment Share on other sites More sharing options...
Alisa Posted June 25, 2004 Share Posted June 25, 2004 Sarah, my doctor prescribed Tagamet for me, just in case the 800mg was too much for my stomach. You may want to mention that to your Dad. Quote Link to comment Share on other sites More sharing options...
Margaret Posted June 25, 2004 Share Posted June 25, 2004 I am not in a trial, but my oncologist has me on Celebrex at 400mg daily. It is for joint/bone pain with the hope that the off label benefit of slowing tumor growth will be gained. My doctor feels that I am too light to be prescribed a higher dosage. Margaret Quote Link to comment Share on other sites More sharing options...
nadri Posted June 26, 2004 Author Share Posted June 26, 2004 Well I'm thinking that as My Dad is not a small man, he is 6 foot 4 inches and not a light weight! that he should be on more than 400mg, but he is so stubborn! Best wishes to everyone Quote Link to comment Share on other sites More sharing options...
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