Frank Fellmer Posted January 4, 2010 Share Posted January 4, 2010 This is the beginning of a journey I will document here. A month ago my wife was diagnosed with sarcomatoid carcinoma of the lung Pleura. It is stage 4, very aggressive and quite rare apparently. The cancer has matastisized (SP)to her spine and affected her legs and mobility. She has undertaken 10 sessions of radiation targeting known tumors and will begin chemotherapy jan 11th. If anyone has any info on this type of cancer I would like to hear about it. Being so rare I can find no written material so I do not hold out a lot of hope for others having information on it. Good health to you all. February 13/10 Scheduled Chemo never happened. Blood count is too weak. Took new blood test last week at home and waiting for results. My wife is now bed ridden with no use of her legs and incontinent. Her spirits are amazingly positive but she is also resigned to her fate as she calls it. She now believes that to proceed with chemo in her weakened state would kill her. I find it hard to disagree with that at the moment. It is now a waiting game a very difficult period with the feeling of being completely powerless to help her get better. Will she get stronger to allow chemo or will she gradually deteriorate. I believe the later to be true as she is now having trouble expressing herself as a result of the mets in her head. She is on morphine patches and pills along with steroids. This keeps her comfortable during these difficult times. I will be back again as conditions change. Wishing all of you the best of luck with your cancer or with coping with cancer in your loved one. Frank Quote Link to comment Share on other sites More sharing options...
Calintay Posted January 4, 2010 Share Posted January 4, 2010 Frank I do not have any info on this but wanted to welcome you (I may of missed your introduction or this may be it IDK) and I am glad you found us. Although her cancer may be rare and you may not find many people her experiencing that you WILL find amazing support and a great community that understands what patients and caregivers are going through. My prayers for you and your wife during this difficult time Quote Link to comment Share on other sites More sharing options...
recce101 Posted January 4, 2010 Share Posted January 4, 2010 Frank, I second Katie's suggestion that you visit cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). GRACE is led by Dr. Howard "Jack" West, a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. A lot of us are "dual citizens" and have the same usernames there as here. The people here at LCSC are a terrific source of support for many cancer-related issues, but for primarily medical questions, especially on less common conditions, you'll find reliable answers at GRACE. Divide your time between the two sites and you'll have an unbeatable combination. Best wishes and Aloha, Ned Quote Link to comment Share on other sites More sharing options...
jstdzy Posted January 4, 2010 Share Posted January 4, 2010 I don't know if anyone has your wife's type of cancer, but with can help with radiation and chemo questions and issues. This is a great place to come for support to scream, yell, laugh and cry. Good luck and prayers on the way for you and your wife. Dana Quote Link to comment Share on other sites More sharing options...
RandyW Posted January 4, 2010 Share Posted January 4, 2010 CancerGrace for info and LCSC for support!!! Quote Link to comment Share on other sites More sharing options...
Frank Fellmer Posted January 9, 2010 Author Share Posted January 9, 2010 thanks to all for the wonderful support. Went to the doctor today and it seems chemo will start Monday with a cocktail of Cisplatin and Gemcitabine. Hope it has lasting effect. For all those that suggested I contact cancergrace.org pls accept a big thank you. It is a wonderful site for info and support. Quote Link to comment Share on other sites More sharing options...
RandyW Posted January 9, 2010 Share Posted January 9, 2010 come here for the support and there for the medical lowdown on things! Also we can help with side effects and minor things like that!!! Quote Link to comment Share on other sites More sharing options...
Barb73 Posted January 9, 2010 Share Posted January 9, 2010 Frank, Welcome to this community of support. The advice given about having the advantage of two great sources, one for information and the other for experience dealing with lung cancer is right on the mark. My husband and I began this journey over five years ago, and are still plugging away, and surviving. May you have success in the treatments for your wife, and able to gather the information you seek. Barbara Quote Link to comment Share on other sites More sharing options...
ts Posted January 9, 2010 Share Posted January 9, 2010 Hi Frank, Welcome to the site and best wishes to your wife. I had 4 cycles of cis/gem last year about this time. A couple of things, from my experience (hers may and probably will vary!) My cisplatin days were long and I just wanted to go home afterwards. On days I had gemcitabine alone, we would go out to lunch afterwards! Don't expect each cycle to have the same impact as far as side effects, fatigue level, or emotions. Manage the nausea proactively, if there is any. I had a supply of Rx I learned to use as needed - more than I would have thought. Almost as important was keeping something in my belly, even if I did not feel like eating - ate enough almonds, yogurt, and toast that I don't really care for them anymore. Also, lots of fluids - water in particular. If she takes dexamethasone for a few days, she may find the day or two after stopping are worse than the days of chemo. On it, she may feel like cleaning the house and moving furniture, when rest is a better idea. I guess with some mobility issues, light exercise might be difficult, but a good idea. You'll hear that chemo patients can't stand smells - I ate lots of Indian and Chinese food while in treatment - garlic, ginger, onions, and spices just to start. I also used high quality soaps that smelled of fresh oranges, mint, and spices to cover the skunky chemo sweat. Be kind to each other and remember that as her caregiver, you need to make sure to get some TLC as well. You both need you to be well. We are here to listen, offer suggestions, and talk from experience. We will try to not steer you wrong. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted January 9, 2010 Share Posted January 9, 2010 Welcome Frank. I'm so sorry you are having to embark on this journey. My 3b lunch cancer manifested itself in the pleura not the lung but it doesn't correspond with your wife's cancer. All I can say is, my cancer didn't manifest a tumor at all and it was very difficult not finding someone like me. So I get that part of your experience. In the recent year just past, I did discover people with similarities so hang in here and cancergrace and it could happen. Helps a little. Please keep posting and let us know how things are going. Judy in Key West Quote Link to comment Share on other sites More sharing options...
Frank Fellmer Posted January 11, 2010 Author Share Posted January 11, 2010 Thank you all for your support and suggestions on how to deal with Chemo and some encouraging words based on your own experience. I have taken them to heart and will apply the lessons learned when the time comes. First day of chemo is today so we will see how it goes. I am sorry if I do not get to read your posts as often as I would like but I do get to them so pls keep them coming. Frank Quote Link to comment Share on other sites More sharing options...
michellep Posted January 12, 2010 Share Posted January 12, 2010 Frank, My heart and prayers go out to both you and your wife. Dealing with the monster disease is really difficult I know because my husband also had lung cancer. It takes it's toll emotionally because it seems one day there is good news and the next day it bad. Just gather up you strength and the love you have for your wife and keep on fighting. Many here have won this battle or continue after years so I wish you luck and please tell your wife the my prayers will continue. Quote Link to comment Share on other sites More sharing options...
valval Posted May 8, 2010 Share Posted May 8, 2010 nice story my web site http://mesotheliomacentar.com/ Quote Link to comment Share on other sites More sharing options...
Joppette Posted May 11, 2010 Share Posted May 11, 2010 Hi Frank, just thinking of you both today the day after her first chemo. She most likely felt quite hyper from steroids yesterday???? Asking. If yes, have the doc give her something to calm her down, like Ativan or something like that. Hoping she breezes through this therapy, some of us did, and some of us didn't, but I wish the best for her. Judy in MI Quote Link to comment Share on other sites More sharing options...
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