ts Posted June 8, 2010 Share Posted June 8, 2010 Yay for Van - no nausea! See, you didn't need our recommendations. But, I will say, you might find the side effects to be cumulative. Your cocktail seems to be getting good results without too much problem. Did you get a port or are you veining it? Do what you can to get some light exercise - it helps relieve the fatigue. I can't imagine why, but it appears to do study after study. Me, I preferred ice cream. Quote Link to comment Share on other sites More sharing options...
Van55 Posted June 8, 2010 Author Share Posted June 8, 2010 Did you get a port or are you veining it? Vein so far. Oncologist said that was fine so long as they have no trouble finding a vein. Do what you can to get some light exercise - it helps relieve the fatigue. I can't imagine why, but it appears to do study after study. Me, I preferred ice cream. I try to walk a mile a day. I think I should increase that. The surgeon has released me to play tennis as of June 30, and I will try that as well. I was playing 3 times a week or more before being diagnosed. Little did I know that I was playing the last 6-8 weeks with the pleural effusion having practically collapsed my left lung. Good excuse for losing -- now that I know about it! Quote Link to comment Share on other sites More sharing options...
Joppette Posted June 8, 2010 Share Posted June 8, 2010 Thanks for bringing us up to date on you! Sounds like you are doing well with this. I agree though that the effects can be cummulative, so just be aware of that. If you are tired, rest! If you are hungry, eat! But most of all LIVE!!!!! We are fighters and survivors! And that is a good thing. Judy in MI Quote Link to comment Share on other sites More sharing options...
jaminkw Posted June 9, 2010 Share Posted June 9, 2010 Van I wrote you a nice chatty post earlier today and am sure it was brilliant, but when I looked, it was gone. I do know I commented on how great you got into what sounds like a promising study. My early chemo cocktail was carboplatin/taxol/avastin. I did Avastin maintenance for awhile but I'm one of the few who got raging bp from it. I got a year in remission from these drugs and went into remission again on Alimta in Feb. All in all, I'd say you are getting some of the best they have to offer us. Keep up the good work. Good luck and keep us posted. Judy in KW Quote Link to comment Share on other sites More sharing options...
recce101 Posted June 12, 2010 Share Posted June 12, 2010 Van, if you're thinking about playing tennis again, I'd say you're doing great! That used to be my favorite game, but it hasn't entered my mind recently except as a spectator. You should have somebody make a video and post it on YouTube! Ned Quote Link to comment Share on other sites More sharing options...
Van55 Posted June 18, 2010 Author Share Posted June 18, 2010 Chemo round two was Wednesday, and I am still suffering no debilitating side effects from it (touch wood). I actually enjoyed a tennis "lesson" with my wife and a pro last evening. I spent an hour on the court with no shortness of breath. I was even able to run down a few balls. The exercise did me a world of good. I will have a CT Scan on July 2 to measure how the chemo is affecting the lesions. Meanwhile, even if I'm not better, I might then be eligible for the Pfizer pill, Crizotinib, that is showing amazing results in trials on ALK lung cancer patients who did not get better with chemo. I deeply appreciate all the good thoughts and wishes from my new "family" here. Thanks to each and every one of you. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted June 19, 2010 Share Posted June 19, 2010 I've been on this site almost three years and I keep hearing new treatments showing some success. ALK is new to me. I'll be interested in checking it out. Judy in KW Quote Link to comment Share on other sites More sharing options...
Bud Baker Posted June 21, 2010 Share Posted June 21, 2010 Sounds great, Van. I was able to do some bike rides after my first and second rounds of chemo, but a few days after that second round, fatigue hit me like a brick. As long as you feel up to it, exercise is great, but don't hesitate to get plenty of rest if fatigue sets in. Quote Link to comment Share on other sites More sharing options...
Van55 Posted June 22, 2010 Author Share Posted June 22, 2010 I've been on this site almost three years and I keep hearing new treatments showing some success. ALK is new to me. I'll be interested in checking it out.Judy in KW Here's a recent article on the early results of clinical trials of the Pfizer experimental pill. http://www.medscape.com/viewarticle/723075 Apparently only 3-5% of us with adenocarcenoma of the lung carry the ALK genetic marker -- mostly non-smokers or people who quit smoking long ago. Still, the trend of anaylizing each specific patient's cancer cells and attempting to target treatment for the specific type of cancer cells found seems to show tremendous promise. This Crizotinib pill may be for the ALK carrier what Tarceva seems to be for the EFGR carrier. Quote Link to comment Share on other sites More sharing options...
Van55 Posted July 7, 2010 Author Share Posted July 7, 2010 On July 1, I had my first CT Scan after starting the chemotherapy infusions. After two infusions the report is "Substantial improvement overall. This is consistent with a positive response to therapy." While an NED report would have been preferable, this is fantastic news for me and is tremendously encouraging. I had my third of four scheduled infusions today and look forward with hope to continued improvement. Thanks again to all for your support and good wishes. Quote Link to comment Share on other sites More sharing options...
RandyW Posted July 7, 2010 Share Posted July 7, 2010 that is fantastic news and can lead to finding NED!!! Thanks!! Quote Link to comment Share on other sites More sharing options...
Joppette Posted July 7, 2010 Share Posted July 7, 2010 Yeah!!!!!! Good news! Next time, NED, right? Judy in MI Quote Link to comment Share on other sites More sharing options...
ts Posted July 7, 2010 Share Posted July 7, 2010 Yay for Van! (I can't help but think of you as a surfer dude with Van sneakers, preferable b&w checkerboard. Hope that makes you laugh!) Quote Link to comment Share on other sites More sharing options...
recce101 Posted July 8, 2010 Share Posted July 8, 2010 Van, that's terrific news! The fact that your cancer is responsive to treatment is encouraging not only for now, but down the road as well. Since you haven't yet set up a diagnosis/treatment profile in your signature area (hint ) I was looking through your previous posts to refresh my flaky memory on your molecular testing results. I believe you tested negative for the EGFR mutation, but that you tested positive for the ALK rearrangement (or translocation or whatever they're calling it this month), meaning the new Pfizer drug crizotinib would be right up your alley. You can keep that in reserve for when and if you need more treatment in the future. My guess is that it will be FDA-approved sooner than most new cancer drugs and therefore available outside of clinical trials. Now go continue with your celebration! Ned Quote Link to comment Share on other sites More sharing options...
ts Posted July 20, 2010 Share Posted July 20, 2010 Hi Van, I saw your post on GRACE and while I can't answer it, I thought I'd check in with you here and ask how you are doing? Are you done with treatment and now on a scan call back plan? (Oops, read further up you are on a trial with maintenance Avastin/Alimta.) (Van found out he has the ALK gene and wondered why he didn't find a trial for use in first line chemo. My guess is that the drug company knows the odds of finding someone with this specific gene is small so showing use of their drug in a full population versus standard treatment would show it to be a failure. Once they get enough assurance as a second line with the mutation, they might try for a first line treatment approval?) Last summer, I had a clean scan in July and then a recurrence in September. I was really happy to be on no treatment during that time. Once I had a recurrence, with something to measure for improvement, I went onto Tarceva. But it also made me second guess having gone through surgery, chemo, and radiation. Why did I not get it from the start? Heaven forbid you need it, the Crizotinib trial will be there for you as a second line. I hope you don't need it. I've thought a lot about the time before recurrence - it is a stressful limbo land. There was actually some relief in getting the bad news. I know that sounds really awful, and may be a better discussion with a private therapist - but I am throwing it out there. I doubt I am alone. Quote Link to comment Share on other sites More sharing options...
Van55 Posted August 18, 2010 Author Share Posted August 18, 2010 I've updated my signature, but thought I would post as well. After 4 cycles of chemotherapy last Friday's CT Scan showed 50% shrinkage overall since baseline and lymph nodes look normal. It's hard to complain about a response like that, even though it's well short of NED. I started maintenance on Alimta and Avastin today and hope for a long progression-free survival on that or perhaps even some further shrinkage. If the disease progresses, I will still potentially be able to get Pfizer's drug for my ALK arrangement. As I told the doc today, I hope and pray that I will be around long enough to see my daughter and her mom get their bachelors' degrees in May of 2014. Quote Link to comment Share on other sites More sharing options...
ts Posted August 19, 2010 Share Posted August 19, 2010 Nice shrinkage! So they are starting school together? Same place? Are they likely to end up in the same class? That would be cute, I think. Quote Link to comment Share on other sites More sharing options...
Van55 Posted August 19, 2010 Author Share Posted August 19, 2010 Wife is enrolled in the Bachelor of Interdisciplinary Studies program of the University of Va. Here in Virginia Beach. Daughter is a Freshman at College of William & Mary. Quote Link to comment Share on other sites More sharing options...
Van55 Posted August 30, 2010 Author Share Posted August 30, 2010 15 days after my final infusion with Alimta, Carbo and Avastin, my CBC showed very low hemoglobin, platelets and white (ANC) counts. A transfusion was recommended, which I declined as my pattern has been for the counts to rebound dramatically after day 15. Pattern held true, and I had my first maintenance infusion of Alimta and Avasitn the next week. 8 days later my hematocrit and hemoglobin levels were very low again. This time I agreed to a transfusion. We were hoping that the Carbo was chiefly responsible for my low counts, but it now appears that Alimta may be as responsible or more so. Does anyone have experience with transfusion(s) for anemia secondary to chemotherapy? I am feeling a bit better, but not as perky and energized as I had been led to believe I would. Quote Link to comment Share on other sites More sharing options...
Joppette Posted August 30, 2010 Share Posted August 30, 2010 Van, I don't have any experience with transfusions from low counts from chemo. I had to have them with the lung surgery, but I was so doped up I don't remember if they helped or not. I know there are people here that can answer your questions. After what you've been through though, I'm not surprised you are not feeling perky and energized. I felt horrible side effects from the carboplatin, and it took time for me to get back to feeling some energy. I slept a lot! Hope you get to feeling better. Judy in MI Quote Link to comment Share on other sites More sharing options...
recce101 Posted August 31, 2010 Share Posted August 31, 2010 I had low white and red blood counts on Alimta + Carbo but never down to the "should definitely have a transfusion" point (HGB stayed above 8.0). Was offered a transfusion, but didn't take it, instead eliminated the Carbo portion. That helped a little, but the HGB didn't really come back until I finished Alimta and started a relatively low dose of Navelbine. Now my HGB is about 12.5, and I can really tell a difference. I also had the impression (including from others who've had one) that a transfusion would make an immediate difference. Guess it's an individual thing, like lots of stuff. Hope you're feeling stronger soon! Ned Quote Link to comment Share on other sites More sharing options...
jaminkw Posted August 31, 2010 Share Posted August 31, 2010 Had carbo, taxol and avastin together but my maintenance was avastin alone. Major side-effect with raging bp is all I remember. My RBCs dip now and then on Alimta alone as maintenance but my platletts are tending to rise now and then. My RN daughter tells me that too high is associated with blood clots so don't want that either. Don't have any info on transfusions but hope your counts stabilize soon. Judy in KW Quote Link to comment Share on other sites More sharing options...
Van55 Posted September 29, 2010 Author Share Posted September 29, 2010 CT Scan results today show NO PROGRESSION OF DISEASE. Physician assistant says that the visible, measurable lesions could even be scar tissue rather than active tumors. Might be wishful thinking, but the maintenance Alimta/Avasitin is keeping whatever they are cornered for now. I am proud to be a six months survivor since diagnosis. Quote Link to comment Share on other sites More sharing options...
ts Posted September 29, 2010 Share Posted September 29, 2010 Yay for Van! Hoping for scar tissue! So you stay on maintenance and scan in 3, 4, or 6 months? Quote Link to comment Share on other sites More sharing options...
Van55 Posted September 30, 2010 Author Share Posted September 30, 2010 Yay for Van! Hoping for scar tissue!So you stay on maintenance and scan in 3, 4, or 6 months? Maintenance dose every three weeks and CT every six weeks until disease progresses or treatment is too toxic. That is the clinical trial protocol. Quote Link to comment Share on other sites More sharing options...
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