CaroleHammett Posted June 19, 2008 Share Posted June 19, 2008 I wasn't due for another scan until next month, but my oncologist halted myAlimta treatments this past Monday following the recent study reporting that Alimta is of zero benefit to those of us with squamous cell carcinoma (as versus adenocarcinoma, etc.). The Alimta infusions were also the apparent culprit responsible for my spiking fevers and worsening SOB so he ordered a CT scan, which I had this Tuesday. The results aren't particularly surprising: my tumor continues to grow and ditto the number and size of my mediastinal, pre-carina and hilar lymph nodes (the pre-tracheal lymph nodes remain about the same size). The CT scan also showed an increase in inflammation in my right lung, probably a flare-up of my radiation pneumonitis. This, in conjunction with a drastic increase in my supplemental oxygen needs (from one liter to five), caused my oncologist to up my dreaded Prednisone dosage--from 5 mg. to 40. (Aaarrgh!) I'm still having spiking fevers every night (as high as 102.0). Blood tests continue to show no sign of infection (although my oncologist believes that a so-far-undetected infection may be the cause or at least a contribuing factor). I'm also now experiencing rib pain, which is most likely the result of stress fractures from coughing (I have Prednisone-induced osteoporosis that has caused 4 sacral stress fractures in the past 10 mos.), particularly given that CT scan shows nothing. The good news is that (a) no new tumors were detected in my chest cavity (these are more likely in squamous cell carcinoma than adenocarcinoma, etc.); and ( we will not be trying any new chemo or targeted therapies for the next 3-6 weeks to give my body a chance to bounce back (and if I am nothing else, I am definitely the "bounce back" kid! ) The other good news is that I'm not out of options yet; i.e., once I "bounce back," he is looking at trying either Navelbine or one of the IGF-1R targeted therapies (both of which were also mentioned by Dr. West at cancergrace.org in his response to my question re squamous cell carcinoma options). Carole Life is a Terminal Condition Quote Link to comment Share on other sites More sharing options...
recce101 Posted June 19, 2008 Share Posted June 19, 2008 Well, Carole, true to form, you managed to make a nice lemonade out of that lemon! Lots of Aloha, Ned Quote Link to comment Share on other sites More sharing options...
StrahDawg Posted June 19, 2008 Share Posted June 19, 2008 Hang in there Carol since I've been following your story you coudn't be more right in saying you are the bounce back kid. Give it some time and get your self back together then get that game face back on and get back to kickin some serious bootie! Thoughts and prayers. Steve Quote Link to comment Share on other sites More sharing options...
Jyoung20 Posted June 19, 2008 Share Posted June 19, 2008 Carole, You certainly are the bounce back kid and you keep dancing!!!! Prayers that Navelbine will do the trick!! God Bless!! Jamie Quote Link to comment Share on other sites More sharing options...
LovesLife Posted June 19, 2008 Share Posted June 19, 2008 Carole - Girl, you bounce more than Tigger! Once again, I am amazed at how you always look at the glass half full. Getting off the Alimta (especially if not helpful in your subtype) with all the side effects that came with it is good. Enjoy your break and get your strength back. I won't tell you to rest and relax 'cause those words just aren't in your vocabulary . I remember in a previous post you mentioned your family was coming to visit (? brother) -anyhow, enjoy the visit. If my memory is wrong - ignore this whole last comment! Take care, Linda Quote Link to comment Share on other sites More sharing options...
fillise Posted June 19, 2008 Share Posted June 19, 2008 Carol, You ARE the original bounce back kid! I know you will enjoy having some time to regain strength before plunging ahead with your next treatment. I'll be dancing in the streets for you! Susan Quote Link to comment Share on other sites More sharing options...
jaminkw Posted June 19, 2008 Share Posted June 19, 2008 Carole, Thanks for directing me here. My tapering off has involved continuing to follow all the threads I'm emailed about because I've posted to them but trying not to tap into new ones! Sorry about the negatives, but like you I only give them a cursory glance then off to the positives. You'll always be the "bounce back kid" and I'm glad you're getting a break but am glad they're looking at a new plan and hope it's one Dr W endorses. Judy in Key West P.S. Am on my way out to lunch. Sorry no wine this early but will drink an ice tea for you and pm you later. Quote Link to comment Share on other sites More sharing options...
SandraL Posted June 19, 2008 Share Posted June 19, 2008 Hi Carole. You have no idea how closely I am watching your story. And how much I admire you. You are an absolute inspiration to me. I have learned so much from your posts, medical stuff and the emotional side. I hope you can have a nice break and get feeling better. And then on to the next drug of choice. My prayers are with you always. Fondly Sandra ps you are still my sister...just need to come up with a different name for our club...luv ya Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted June 19, 2008 Share Posted June 19, 2008 Hi Carole, So Sorry to hear about all the set backs and problems your are having but I know with your fantastic attitude and spirit you will bounce back. Please know that I follow and read your post. You certainly put a different and uplifting spin on things that are very encouraging and inspirational. My thoughts and prayers are with you for nothing but the very best. Take Care, Rich Quote Link to comment Share on other sites More sharing options...
Patti B Posted June 19, 2008 Share Posted June 19, 2008 Carole- Hope the time off from chemo gives you a chance to re-group. Good luck with your next round of treatment. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
beatlemike Posted June 19, 2008 Share Posted June 19, 2008 Sorry about the results Carole but I pray the new chemo works very well. Quote Link to comment Share on other sites More sharing options...
CaroleHammett Posted June 19, 2008 Author Share Posted June 19, 2008 Thanks everyone for your too kind words and best wishes. Last night was my first night without a fever (Yeah!!!!), mainly because I'm drinking water by the gallon and taking 2 Tylenols every 4 hours whether I need them or not! On the flip side, due to my dreaded Prednisone, I only slept 2 hours so tonight I'm taking Restoril as well! Jamie: I'm actually hoping to qualify for the IFG-1R targeted therapy rather than the Navelbine since the former has a 72% return for squamous cell (Yeah!) whereas the Navelbine (and any other possible remaining chemo drugs) has less than 20%. I've been gathering info on the former and will post my findings later under New Treatment/Clinical Trials. Linda: You're absolutely right. My brother and his wife are flying in from Alaska the first week of July and then my cousin and her daughter are flying in from California and Arizona respectively the third week of July, so the timing of my "break" couldn't be better! Judy: Both the Navelbine and the IGF-1R were on Dr. West's list. To everyone: So as to clarify, the tumor and lymph node growth isn't "new news." They have been growing since last December, which is why I went on Tarceva in January, and when it didn't work, began on Alimta in May. Not only was the Alimta toxic for me, but a study published at the June ASCO conference showed that Alimta has no effect on squamous cell. As you all know, I've been insistent all along that buying time is well and fine so long as I still have quality of life. I expect to regain that over the next few weeks, and in the meantime, will continue my research (we've got to stay ahead of our oncologists, don't we?) Thanks again, everyone. I'll keep you posted, but definitely already feeling better today, and hopefully the Prednisone will help get my oxygen back down (still at 5 liters, unfortunately). Affectionately, Carole "It's not the hand you're dealt, but how you play it." Quote Link to comment Share on other sites More sharing options...
Shar Posted June 20, 2008 Share Posted June 20, 2008 Hi Carole, Hopefully the next few weeks will give your body time to get ready for the next treatment. I love your attitude, I always like to stay a step ahead of onc's as well. Your spirit is amazing and I hope the prednisone does it's trick, Sharon Quote Link to comment Share on other sites More sharing options...
Barb73 Posted June 20, 2008 Share Posted June 20, 2008 Carole, Thank you for letting me know to come here. I am grateful - would not want to miss one facet of your inspirational journey. Like you, Bill and I look at the glass half full, and do know that there are other options out there. So glad of that! Gawd, I live to find the new stuff. It keeps me going with a certain energy. No "little old lady" here. I am a bull when it comes to hope. Yes, I do quiver and crumbel, but that's when I vent, and get back on that "horse." Your doctor is similar to ours. He believes in cancer becoming a chronic. Hey, we care about wheither or not it's treatable - long as it can be quelled, beaten back, and stepped upon. Visiting the different forums regularly has been lacking from me of late. Some home repairs had to be accomplished, and it's not easy finding the right solution. We did install what was needed and all's well. Keep that atti-t 8) d, girl. It is paying off very nicely. (PS: I check my email every day - just in case someone writes to me.) Barbara Quote Link to comment Share on other sites More sharing options...
CaroleHammett Posted June 22, 2008 Author Share Posted June 22, 2008 Hi, everybody. Just a quick note to let you all know that my dreaded Prednisone has done the trick, and from 5 liters the other day, I am now down to 1-/12 liters (using oximizer, which gains me 1-1/2 liters). My rib pain is down to almost nothing, and I have also not run a fever since my posting on Thursday so this BOUNCE BACK KID is definitely doing the HAPPY DANCE. While it's true that I'm still very housebound and still having to spend a lot of time in bed, today--for the first time--I was able to water my plants* again on both decks all by myself! *On my east deck off my bedroom, I have dozens of blooming hanging pots of pansies, violas, petunias, interspersed with Dusty Millers, etc., plus non-hanging pots filled with garlic chives, basil and cilantro (my three favorites), and other pots of purple sage, yellow moonflowers, pink wind candy, pink tea roses, etc. I also have vines (both ivy and vinca) in planters around the inside of my deck fence with the vines winding through the lattice work above. It is all exceedingly beautiful and visible from my bed through sliding doors, thus always there to lift my spirits whether I'm in my bed or out on the deck (which also has a lawn swing and picnic table and chairs--my outdoor living room--I am one lucky woman! ). Anyway, I'm definitely doing much better, and although I know the dreaded Prednisone is undoubtedly going to be biting me at some point soon, in the meantime, it keeps me alive (which is why we have a love-hate relationship! ) Thanks again for all your kind words and wishes. Affectionately, Carole the Incorrigible Quote Link to comment Share on other sites More sharing options...
fillise Posted June 22, 2008 Share Posted June 22, 2008 Dear Incorrigible, I'm so glad your have been able to cut back on the oxygen and have been able to water your beautiful plants. There is something about being able to care for other living things, especially things that add so much beauty to the world and to our lives, that is very restorative. Susan Quote Link to comment Share on other sites More sharing options...
dchurchi Posted June 23, 2008 Share Posted June 23, 2008 Carole, Boy I love the way you fight the beast!! I am sorry that Altima was not working, but on the flip sde glad you still have treatment options. you insipre us all in the way you never appear to be down. You truly find the silver lining in every gray cloud. My continued prayers that your body recovers enough to tolerate your next round of treatments. Quote Link to comment Share on other sites More sharing options...
Maryanne Posted June 23, 2008 Share Posted June 23, 2008 Boy Carol, you are one person I woud love to have in my corner if I needed help. You are incredible and I admire you so much. I love your posts even though some may be full of doom and gloom you always have a way of making it through with humor and positive thoughts... You are incredible and my hat goes off to you. I am so glad you are feeling better and I have a feeling it won't be long until you are out and about again. Thinking of your wth lots of positive thoughts. Maryanne Quote Link to comment Share on other sites More sharing options...
shineladysue Posted June 23, 2008 Share Posted June 23, 2008 Carole, How in the world did I miss this . You are such an inspirational lady and I am always inspired after reading you . This time is no different. So sorry for all that you have been through, but glad to read that you are feeling better. Guess you have read before that Alimta caused pneumonitis in my husband and high doses of prednisone, slowly being lowered , did the trick to reduce inflammation and help him breathe better. I hope you continue to do better and your new chemo plan will be the ticket. Navelbine has a reputation for being mild . Keep up that fantastic attitude, it's contagious. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
CaroleHammett Posted June 23, 2008 Author Share Posted June 23, 2008 Hi, everybody, and thanks again to all for the good vibes being sent my way! I continue to hold my own and am even thinking that I might try a little warm water pool therapy this afternoon (I've not been able to do that for almost a week now and since it's my main "exercise" since I developed osteoporosis, I really hate skipping it!). Susan: You're absolutely right about my plants: I find working with them both healing and restorative (to the spirit if nothing else). Not only that, but Barb recently posted news articles about the "cancer killing" (my phrase) powers of dirt! Sue: I knew that your husband had radiation pneumonitis following his radiation therapy, but hadn't put together the fact that he was also on Alimta. Debbie: I can't believe that in the middle of all you're going through, you stopped to write me such encouraging words. You are in my thoughts all the time now and I so hope that you are taking care of yourself as well as Alan. Maryanne: You're going to give me a "big head" and then none of you will be able to stand me! Again, my thanks to all of you. Your just "being there" means the world to me. Carole Quote Link to comment Share on other sites More sharing options...
Bev'sSister Posted June 23, 2008 Share Posted June 23, 2008 Carole, I am writing this to let you know how truly amazing I think you are. I think you are a true inspiration to everyone who has battled this awful disease. I watched my sister fight with all of her might and hope. I continue to come here to maybe write to someone who may need encouragement or just someone to talk to. But as I have read your posts your courage and positiveness humbles me. You truly are a hero or she-ro. With Love and Respect, Bobby Quote Link to comment Share on other sites More sharing options...
Larry's Wife Posted June 23, 2008 Share Posted June 23, 2008 Carole, add me to the Admiration Society! You've made me laugh and you've made me cry, sometimes at the very same time. I'm really glad you're a part of my "virtual" life. Lynn Quote Link to comment Share on other sites More sharing options...
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