jaminkw Posted October 31, 2008 Share Posted October 31, 2008 Jussi, I am sorry your family doesn't acknowledge the seriousness of your struggle. The fact that they are using defense mechanisms doesn't make you feel any better. I don't know what to do in the face of these responses except to slam dunk them every once in awhile with the reality of your situation. It may not change them but it will probably make you feel better. Judy in Key West Quote Link to comment Share on other sites More sharing options...
Patti B Posted October 31, 2008 Share Posted October 31, 2008 Jussi- I had 16 cycles of Alimta but never a fever afterward. It will eventually cause fatigue and SOB. About the family thing - boy do I know. I had to finally tell a few of mine to quit dumping their problems on me - I have enough to handle of my own. Sometimes I think they do it because they just cannot accept the fact that we have cancer. Its not right, but....... Wishing you lots of luck on the Alimta. Keep in touch!!! Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
Vesuri Posted December 3, 2008 Author Share Posted December 3, 2008 Hi Good People! Just got back from hospital. Ultrasound (liver etc.), x-ray and blood tests... Tomorrow docs appointment and 4th round of alimta... well, 4th round if today's examination shows that alimta works... All the best! Jussi Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted December 3, 2008 Share Posted December 3, 2008 Jussi Hoping for good results for you!! Warmly, Christine Quote Link to comment Share on other sites More sharing options...
jaminkw Posted December 3, 2008 Share Posted December 3, 2008 Jussi, your post says Dec 3 although it's still morning here so I guess we're waiting until tomorrow for the test results. Here's hoping for you the best news and that the Altima is working. Keep us posted. Judy in Key West Quote Link to comment Share on other sites More sharing options...
SandraL Posted December 3, 2008 Share Posted December 3, 2008 Prayers that Alimta is working for you Jussi. Please keep us updated and take care. Sandra Quote Link to comment Share on other sites More sharing options...
jaminkw Posted December 3, 2008 Share Posted December 3, 2008 Jussi, just to let you know I was thinking about you. Did you get those results today? That 4th Atlimta? Let us know when you can. Judy in Key West Quote Link to comment Share on other sites More sharing options...
LovesLife Posted December 4, 2008 Share Posted December 4, 2008 Jussi - praying for good results that the Alimta is working. Linda Quote Link to comment Share on other sites More sharing options...
dscherer Posted December 4, 2008 Share Posted December 4, 2008 Sending prayers that it is working! Keep us updated....we are here for you cheering you on! Dana Quote Link to comment Share on other sites More sharing options...
Vesuri Posted December 4, 2008 Author Share Posted December 4, 2008 Hi!!!!!!!! Back from doctor's appointment.... Mixed news... Since all other checkups have been CT and yesterday was ultrasound and xray, apparently they couldn't make very strong conclusions... there's advance, but they couldn't say how much progression there is after all... seems that there are some new mets in liver. There is also something visible in the bottom of the left lung (this was seen in the xray) but when I asked could this be from the pneumonia I had after 1st alimta infusion, he said it could be. Options: * take 4th alimta and schedule a CT in 3 weeks time to get clear picture if the alimta is working or not and what's the status * change to 3rd line chemo (If I remember correctly he was suggesting taxotere(?)) After discussing the situation and overall status, we decided to go with the option 1. So I already got the 4th alimta and now I'm waiting the CT date. Thank you all for the very positive messages, you people are GREAT! Jussi Quote Link to comment Share on other sites More sharing options...
jaminkw Posted December 5, 2008 Share Posted December 5, 2008 Jussi, it's a bummer that you wait for tests only to find they can't tell you much. Glad you went with another treatment and hope the CT results confirm you can stay on this treatment. Judy in Key West Quote Link to comment Share on other sites More sharing options...
Vesuri Posted January 1, 2009 Author Share Posted January 1, 2009 Hi All the best to 2009! Short update.... Seems that Alimta isn't working so I have an appointment 12th Jan about Tarceva... Lets see how it goes... -Jussi Quote Link to comment Share on other sites More sharing options...
jaminkw Posted January 1, 2009 Share Posted January 1, 2009 Jussi, thanks for checking in. So sorry the latest treatment wasn't the one. I know how discouraging it must be but good luck with the Tarceva. It's been the majic bullet for a lot of people. Best of 2009 to you as well. Judy in Key West Quote Link to comment Share on other sites More sharing options...
fillise Posted January 1, 2009 Share Posted January 1, 2009 Jussi--sorry to hear about the progression, but I hope the Tarceva does the trick for you. Happy New Year! Susan Quote Link to comment Share on other sites More sharing options...
SandraL Posted January 2, 2009 Share Posted January 2, 2009 Hi Jussi. I too have been through the disappointment of Alimta and other drugs not working. I am currently on tarceva and am still crossing my fingers. I wish the best for you. Sandra Quote Link to comment Share on other sites More sharing options...
Vesuri Posted January 7, 2009 Author Share Posted January 7, 2009 Hello good people! So, now things haved moved on. I'd like your opinion on this.... I sent my papers to this cancer clinic Docrates where you can get oncolytic virus treatments (I think it's the only place in europe at the moment). They reviewed them and apparently I am suitable candidate for the treatment. At the same time I got called in my local hospital to discuss about starting Tarceva... Should I start Tarceva first and see if it works (might not?) or take the virus treatment road first.... I know that these cannot be going on at the same time. Comments appreciated!!! Check this for reference (I've talked about this before): http://www.docrates.fi/oncolytic_virus_treatments/ -Jussi Quote Link to comment Share on other sites More sharing options...
fillise Posted January 7, 2009 Share Posted January 7, 2009 Jussi, I don't have any information about the treatment you mentioned, but this might be a good question for Dr. West and his colleagues at www.cancergrace.org. Let us know what you decide, Susan Quote Link to comment Share on other sites More sharing options...
recce101 Posted January 7, 2009 Share Posted January 7, 2009 Hi, Jussi. I'd vote for the Tarceva. It's a "known quantity" with plenty of clinical trial evidence to back it up. About the oncolytic virus treatments, I think you should ask the opinion of Dr. West at cancergrace.org (previously onctalk.com). He's up on all the latest stuff, attends international conferences, and will give you a straight answer very promptly. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
jaminkw Posted January 7, 2009 Share Posted January 7, 2009 Jussi, only you can make this decision but I'm with Ned. Tarceva is tried and true. Lots of people here have done well on it, some have not but I'd keep the more experiemental treatment as a backup. I would ask Dr West also, but I have a friend who took some experimental drug I believe smuggled in from France through Canada and stayed cancer free (prostate cancer) for over ten years. I would consider it but I understand the guy's in jail! Judy in Key West Quote Link to comment Share on other sites More sharing options...
DrWest Posted January 8, 2009 Share Posted January 8, 2009 Jussi, It's good to meet you, electronically speaking. I wouldn't be so presumptuous to try to suggest what someone else should do (and it's illegal for me to try to serve as the doctor for someone who isn't my patient). But speaking as someone who has been focused on lung cancer for 10 years, I can say that I don't think an oncolytic virus treatment would be mentioned if you gave 10 lung cancer experts five minutes each to name any promising ideas on the horizon. I'm all for clinical trials, but there may be a reason that you can count on one hand (and maybe one finger) all of the centers in the world that are interested in this approach. And I don't know if any evidence that would lead someone to consider this a practical, promising approach. On the other hand, tarceva has been shown to improve survival in a broad population of patients with advanced NSCLC who have previously received chemo. it's approved as a known effective treatment throughout the world. Personally, I'd hate to have one of my own patients possibly miss the opportunity for an established active treatment because they declined from disease progression or side effects after receiving a pretty much untested strategy. One final consideration would be whether the investigational approach is available later. if it's something that a patient wouldn't be eligible for after tarceva but could only do now, it's a stronger consideration than if it would be just as feasible to do the tested approach of tarceva perhaps followed by the investigational approach. -Dr. West Quote Link to comment Share on other sites More sharing options...
Vesuri Posted January 12, 2009 Author Share Posted January 12, 2009 Hi I already thanked Dr. West for this reply in the cancergrace forum. Very good information. So, today I had doc's appointment and I start Tarceva as soon as I get it from local pharmacy. Lets hope it works. I guess it doesn't correlate with the side effects, e.g. if you don't get the skin problems, then the Tarceva isn't working on the cancer either? I also have appointment to the cancer clinic about the oncolytic virus treatments at the end fof this month. Lets see what they have to offer... One more thing... Has anybody ever had this kind of numbness in the chest/ ribs? Like numb area on the skin? Little bit difficult to describe.... Take care and many positive and cancerfree thoughts to all of you! Jussi Quote Link to comment Share on other sites More sharing options...
recce101 Posted January 13, 2009 Share Posted January 13, 2009 Hi, Jussi. I'm glad you're starting the Tarceva. Yes, there is a correlation between the skin "rash" side effects of Tarceva and its effectiveness, but it's not an exact correlation. A few people respond to it with essentially no side effects, and a few have a severe rash but no benefit. But in general, they seem to work together. If your skin is the least bit dry, you should get it in shape now to minimize the discomfort of the rash when it hits in about a week. A few of us have been having on ongoing discussion with Barb73 about her husband's Tarceva — you might want to start here and read the rest of the thread, including the GRACE references: http://lungevity.org/l_community/viewto ... 981#377981 You asked about the numbness and general weird feeling in the chest and on your skin. As I recall you had a pleurodesis to "glue" the surfaces and prevent more fluid buildup. That in itself, or perhaps the incision used to get access to your lung, might be causing it. The 7-inch thoracotomy incision in my right side healed long ago, but even now (28 months later) I still have areas of numb skin and hard-to-describe touchiness around to the front under my right breast. I'm told it could be from my pleurodesis, or referred pain from the nerves that were cut on the side. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
jaminkw Posted January 13, 2009 Share Posted January 13, 2009 Hi Jussi, glad you checked in with Dr West. He apparently felt it was important enough to post his reply here on the LCSC site. I'm also happy to hear you are going on Tarceva. A lot of people have done well on it. I would, however, do like Barbara did and have the recommended skin remedies on hand ahead of time just in case the rash starts earlier. Judy in Key West Quote Link to comment Share on other sites More sharing options...
SandraL Posted January 13, 2009 Share Posted January 13, 2009 Best of luck with the Tarceva Jussi. I am currently on it with the jury still out on how I am doing. Thanks for checking in Sandra Quote Link to comment Share on other sites More sharing options...
Vesuri Posted April 24, 2009 Author Share Posted April 24, 2009 Hi Good People!! It's been a while... Just came back from doc's appontment. Seems that the Tarceva is working. Chest xray was stable and ultrasound scan showed stable as well, compared to previous visit. Also bloodtest results were OK. Stable's good, me like stable!!! So, doc said that I should continue with Tarceva. And the sun is shining so beautifully first time this spring. Life is worth living!!! Have a nice weekend all of you!!! Jussi Quote Link to comment Share on other sites More sharing options...
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