Christine Posted December 6, 2004 Share Posted December 6, 2004 Hello everyone! I've been lurking around this site for a couple of months now but just couldn't bring myself to post. Before I tell my mother's story I wish to thank everyone who participates on this board. Without knowing it, over the past months everyone has provided me with comfort and hope. My mother, an otherwise healthy 61 year old former smoker, was diagnosed with NSCLC, stage IV in mid-September, 2004. In addition, she was also diagnosed with primary kidney cancer (a tumor was caught on the chest CT scan). Since then she has completed 14 rounds of WBR for 2 brain mets (the only mets). Between the WBR and chest radiation she was hospitalized for a pulmonary embolism. She had the first of 33 rounds of chest radiation while in the hospital for the PE. She was unable to start chemo at this time because the port-a-cath was not in place yet. She began chemo the following week. She was given Cisplatin on Monday, followed by VP-16 on Tues. and Wed. Her oncologist gave her Cisplatin the following Monday and then decided that she wouldn't tolerate additional chemo. About 1-1/2 weeks later my mother was admitted to the hospital with a fever of just under 102. Her white blood cell count was very low. She was given 2 units of blood and was eventually diagnosed with Cytomegalovirus (CMV Virus). She began taking Valcyte and is much better now. Originally the treatment plan was to give her another round of chemo during the last week of radiation. Now her oncologist is saying no more chemo.... ever. He believes since she had a bad reaction the first time, she couldn't tolerate additional rounds. If not chemo, what then? Isn't there a milder form of chemo that she might be able to tolerate? I apologize for a very long first post. Thank you all. Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted December 6, 2004 Share Posted December 6, 2004 Hi Christine, Welcome out of the shadows. You gave a pretty darn good report...you have been paying attention! Sounds like your mom has been through the wringer. None of the reactions that she has had are any fun at all. Sounds as if she has been sick this whole time. That's not good. Chemo and radiation are bad enough without CMV and PE. and all... This has got to be a tough decision for you and your Mom. Do you have any other family? And if so, what do their gutts say? How does your Mom feel about stopping treatment? I don't hear that is what you want. I hear that you may want to move forward, is that right? How much do you trust this oncologist's judgement? Is this something that you would get a second or third opinion for? We do have an oncodoc here who answers some questions at times. You could try posting there... Under Ask the Experts.... You MUST be going through a rough time right now, Christine. I hope that you have the support around you to hold you and your Mom up. I hope that my comrades can come up with some ideas to help you out. In any event, I am so glad that you posted and I hope that you will find the answers you are looking for. Cindi o'h Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted December 6, 2004 Share Posted December 6, 2004 Cindi said it well - but I will second, before I stopped all treatment, I would at least get a second opinion. I am sorry for the hard time you have had, hopefullly you will let little breaks here and there. Margaret Quote Link to comment Share on other sites More sharing options...
Don Wood Posted December 7, 2004 Share Posted December 7, 2004 Hi, Christine, and welcome. Hold onto hope. My wife was diagnosed with NSCLC, Stage IV (bone mets), 26 months ago. She has not only staved off the cancer with chemo and radiation, but she has weathered a systematic staph infection and bilateral pneumonia on the way. I agree with the others that you should get a second opinion on treatments. As long as there are ones out there (and there are some milder than what your mom is taking), you should investigate. There are Iressa, Navelbine, Gemzar, Alimta, Tarceva. etc. Good luck, and keep us posted. Don Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted December 7, 2004 Share Posted December 7, 2004 Hi Christine and welcome.As your aware of by now there are lots of knowing and caring people here. I was on carboplatin and Taxol and had a very severe allergic reaction to the carbo.They discontinued the carbo but kept me on the Taxol for the remaining 2 or 3 rounds.I'm not a dr. but I think it's possible to continue chemo if they feel a certain type is advantageous & the patient is healthy enough to tolerate it. Quote Link to comment Share on other sites More sharing options...
stand4hope Posted December 7, 2004 Share Posted December 7, 2004 Hi Christine and WELCOME! I agree with all the other posts above me. Don listed several of the potential chemos that aren't as harsh. My husband is Stage IV and has cancer in many places, but Iressa (a pill taken by mouth once a day) has kept him stable since June. It doesn't work for everybody, but it has worked for many others on this board - some for well over a year. If the Iressa ever fails (hopefully never), but if it does, on our last visit the onc said he would try Alimta. It's supposed to be as effective as Taxotere, but not nearly as bad side effects. In fact, a couple of people on here have reported they had no side effects at all. It's pretty new on the market, but is starting to be used by many. Prayers are being said for your mom, Christine. We're all in this together and we're here to help in any way that we can. God bless, Peggy Quote Link to comment Share on other sites More sharing options...
ellakc2 Posted December 7, 2004 Share Posted December 7, 2004 Hi Christine, Welcome! I definitely agree w/ all the above people. There is so much out there. Take care and I will keep you and your mom in my prayers. We're always here if you need to vent. Quote Link to comment Share on other sites More sharing options...
Nushka Posted December 7, 2004 Share Posted December 7, 2004 Christine, It does sound like your mom has been through a lot lately. I can understand that she is upset but I would seek a second opinion. As Don said, there are many more out there that might be much easier on your mom. Don't give up hope. Can surgery be done on the kidney tumor? Welcome to our family. I wish you didn't have to been here but since you are I am glad you posted. It is more likely that someone will answer you specific questions if they know exactly what they are. I wish you the best of luck. Nina Quote Link to comment Share on other sites More sharing options...
J.C. Posted December 7, 2004 Share Posted December 7, 2004 Christine, Welcome, you already got very good answers and more will follow. I only wany to wish you and your mother the best in the decision you take, another oncologist, another kind of chemo, a family reunion to discuss it all, all is open to you. Good luck and keep us posted. J.C. Quote Link to comment Share on other sites More sharing options...
Jackson Posted December 7, 2004 Share Posted December 7, 2004 Hello Christine, My mom has small cell cancer but she was also given Cisplatin (with Camptosar) as her first line treatment. She did handle it pretty well but we were told that Cisplatin is one of the more difficult chemo drugs to tolerate. My mom is now taking Carboplatin with VP-16. Carboplatin is supposed to work about the same as Cisplatin but be much easier to tolerate. As the others said there are many other chemo drugs out there so just because your mom didn't tolerate Cisplatin well doesn't mean there are no more options. Quote Link to comment Share on other sites More sharing options...
Christine Posted December 7, 2004 Author Share Posted December 7, 2004 First, thank you all! What a warm welcome. My twin brothers and I believe that a second opinion is in order; however it may take some convincing for my parents to agree. My father just finished chemo and radiation for recurrent esophageal cancer and he handled it extremely well (in fact, he and my mother started their radiation treatment on the same day!). For that reason he has all the faith in the world that their oncologist knows what he’s doing – and I’m sure he does. But the phrase “difference of opinion” exists for a reason. I believe there may be an oncologist out there who views my mother’s treatment options in an entirely different way. It’s funny, I feel as though I already know everyone here. I guess, in a way I do. Again, thank you for the encouraging words. They really do help. And please know my prayers are with you all also. Quote Link to comment Share on other sites More sharing options...
karenl Posted December 8, 2004 Share Posted December 8, 2004 Hi Christine Sorry to hear that both your parents have been stricken with cancer - you sure have alot on your plate! My Mum was stage IV at diagnosis, and is now 17 months out, doing extremely well. This disease can be managed - I agree with the others that a second opinion would be advisable!! Welcome, and all the best to you and your family. Karen Quote Link to comment Share on other sites More sharing options...
Ry Posted December 8, 2004 Share Posted December 8, 2004 Welcome to the board. Your mom still has many options left as Don mentioned. Good luck, Rochelle Quote Link to comment Share on other sites More sharing options...
shineladysue Posted December 8, 2004 Share Posted December 8, 2004 Welcome Christine, I just wanted to welcome you and let you know that you have many of us out here thinking about you and sending prayers your way. God Bless sue Quote Link to comment Share on other sites More sharing options...
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