purplelady47 Posted May 5, 2006 Share Posted May 5, 2006 Hello everyone! I finished chemo two weeks ago - 6 Carbo/Taxol treatments. The last one was a bit difficult but all in all, chemo was doable. Needless to say, I am glad that is done for now. I had my CT scan and the results show approximately 50% shrinkage in the two tumors in my right lung with the adrenal tumor remaining stable. I am very pleased with the results. Talked to my doctor today and he calls this "partial remission". I have an appointment for another CT scan in 7 weeks and will see him in 8 weeks. I am basically at the "wait and see" point. I am not happy with this - I have always been somebody who is proactive, rather than reactive, so this "wait and see" thing is going to make me nuts. I am thinking that this is time for a second opinion. I want to gather up my scans, biopsy slides and medical records and go to the Moffit Cancer Center in Tampa for a second opinion. My thought is that we knocked the tumors back quite a bit, why stop now? I understand the idea of palliative treatment for my Stage IV disease. However, since the chemo treatment was to improve quality/quantity of life, why not try to continue to decrease the size of the tumors? I'd appreciate your opinion about the 2 month "wait and see" period and the idea of the second opinion. Thanks so much, Pam in FL (who really is very grateful for the SHRINKAGE!!!) Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted May 5, 2006 Share Posted May 5, 2006 Hi Pam, First congratulations on finishing chemo and being in partial remission. That is fantastic! My doctor was the same way (my doctor's stance is have to treat the patient without killing them) at the beginning but I asked her for no breaks that I made promises that I would do everything possible to beat this and was going for nothing short of a cure--I'll have plenty of time to rest when I'm dead. We both agreed that as long as I could handle the chemo, with no adverse side effects and still have a quality of life this is what we would do. Now don't get me wrong breaks are good if one is needed, everyone is different, everyone reacts differently and so many things play a roll on any decision. For me being pro-active and going all out is the only way to go and so far so good overall. Bottom-line it is our life that is hanging in the balance and we should be able to have a say on it. Hope this helps. Good luck on what ever you decide. Rich Quote Link to comment Share on other sites More sharing options...
Ry Posted May 5, 2006 Share Posted May 5, 2006 Yes, go for the second opinion. We have several members here that go to Moffit for treatment. It sounds like your gut is telling you to keep going--so I think the second opinion is a good idea. You can read my profile for my husbands treatment protocol--no break after the carbo/taxol. Good luck and congratulations on your response to the treatment. Rochelle Quote Link to comment Share on other sites More sharing options...
karen335 Posted May 5, 2006 Share Posted May 5, 2006 Like Rich said. Everyone is different. I too had Taxol/Carbo and had radiation and chemo. I had a two month break and that was 3 years ago. I am IV now, have had two brain surgeries. April 2004 and Feb. 2006. It's an individual situation... Sending prayers and congrats on the shrinkage... Just keep a positive attitude and keep on fighting. Go for the 2nd opinion. I had 4 opinions, it gives you a peace of mind... Karen Quote Link to comment Share on other sites More sharing options...
kamataca Posted May 5, 2006 Share Posted May 5, 2006 Congrats on the shrinkage! I have no real advice to give you on the other counts, just to remember to celebrate every single victory, no matter how small they may seem. Oh, and keep us in the loop on victories as well. We love to celebrate them with you! Kelly Quote Link to comment Share on other sites More sharing options...
Maryanne Posted May 7, 2006 Share Posted May 7, 2006 Hi Pam, Great news on the shrinkage. If you feel better getting a second opinion by all means go for it!! You are doing great. Keep us posted. Maryanne Quote Link to comment Share on other sites More sharing options...
carolhg Posted May 7, 2006 Share Posted May 7, 2006 The shrinkage sounds great. I would definitely seek a second opinion. I think you should do all that you can to help yourself. Quote Link to comment Share on other sites More sharing options...
Don M Posted May 7, 2006 Share Posted May 7, 2006 Pam: I would definitely get a second opinion. I think your current onc wants to treat the disease as a chronic condition and is holding off the big guns until progression rears its ugly head. I would be looking at targeted radiation therapy to kill off the remaining tumors. There would be no guarantee of a cure, but I would still like to get rid of the tumors. You might consider cyberknife treatment to kill off the tumors. If they are not too big, and not too many, it could be a good way to get rid of them altogether. There are 3 cyberknife centers in Florida. Here is a link that takes you to the manufacturer website that lists all the cyberknife centers in the US. This particular page show 3 centers in Florida. http://www.accuray.com/SiteLocations/index.aspx Here is another link that will take yo to a message board where you can ask radiation oncologists who practice cyberknife surgery if you would be a candidate. One of them practices in Miami. http://www.cyberknifesupport.org/forum/default.aspx?c=4 Congratulations on your shrinkage. Don M Quote Link to comment Share on other sites More sharing options...
purplelady47 Posted May 9, 2006 Author Share Posted May 9, 2006 Thanks everyone!! I've contacted Moffit and will hear from them within two days regarding an appointment. I have all my medical records, films and biopsy slides, so I am ready. I really needed your validation of my gut feeling to seek a second opinion. Knowledge is power and I don't want to "Wait and see". Gratefully, Pam in FL Quote Link to comment Share on other sites More sharing options...
Maryanne Posted May 9, 2006 Share Posted May 9, 2006 Good luck and keep us posted. Maryanne Quote Link to comment Share on other sites More sharing options...
marym Posted May 9, 2006 Share Posted May 9, 2006 Hi Pam, I also would say go for a second opinion. I had an initial chemo with about more than 50% reduction. My blodd counts were taking a beating, so after 8 months, I was switched to Alimta. And I was already told that Tarceva is another possibility. I go to Moffitt and I do like the care there. Other that some long waits, they are really good. Good luck and keep us informed. Mary Quote Link to comment Share on other sites More sharing options...
Littlegirl Posted May 9, 2006 Share Posted May 9, 2006 A second opinion will make you feel more comfortabale about what is going on and what is being said to you. Just an FYI...my mom's radiation oncologist told us this morning that the tumor could/should continue shrinking up to 6-8 weeks after completing her chemo/radiation treatments. Karen Quote Link to comment Share on other sites More sharing options...
Littlegirl Posted May 9, 2006 Share Posted May 9, 2006 A second opinion will make you feel more comfortabale about what is going on and what is being said to you. Just an FYI...my mom's radiation oncologist told us this morning that the tumor could/should continue shrinking up to 6-8 weeks after completing her chemo/radiation treatments. Karen Quote Link to comment Share on other sites More sharing options...
Kaffie Posted May 9, 2006 Share Posted May 9, 2006 You sound like you have a really positive attitude and a determination to beat this nasty stuff. As long as you feel you can keep up, I say go for it. Rich is a perfect example of why Kathy Quote Link to comment Share on other sites More sharing options...
tatlyn Posted May 9, 2006 Share Posted May 9, 2006 Hi Pam, I agree. If you feel up for it, why not keep going. Best thoughts and prayers and congratulations on the shrinkage, such a wonderful word Quote Link to comment Share on other sites More sharing options...
trishnmiller Posted May 10, 2006 Share Posted May 10, 2006 Hi Pam, Have the doctors suggested IMRT or Cyberknife on the tumors? My husband had both procedures on his lung tumor. Trish Quote Link to comment Share on other sites More sharing options...
MichelleA Posted May 15, 2006 Share Posted May 15, 2006 MD Anderson Orlando, it is mdandersonorlando.com or .org. I forgot. You will get an appt. w/in 2 days of their receiving your records. Both Moffitt and MD Anderson are great. My father in law didn't get great bed side manner at Moffitt. Michelle Quote Link to comment Share on other sites More sharing options...
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