Inkerdoodler Posted March 12, 2006 Share Posted March 12, 2006 We had another visit on 3/10 after being told 3/6 that we were virtually "out of options". They had us meet with a psychooncologist who wants to refer us to hospice. We are devastated and Jim is not ready to give up! His pain had been pretty well under control but with the stress of this news it came back and took three days to get it back under control. Last week's scans show continued progression and that the Navelbine was not working. They said there was only one more chemo which is considered highly toxic and only had a small chance of working; it would be likely to give him severe diarrhea. However, when I went into the meeting on 3/10 I was armed with a list - they are willing to try him on Tarceva despite only a small chance of it working. They are telling me that it is "only months" regardless. It appears that three ribs have been invaded and are being destroyed and there are additional nodes in various other places, as well as in his "good" lung. But if he does nothing, there obviously is NO chance so we're willing to take whatever chances are available. He also has a double hernia aggravated by constipation caused by the pain meds, making it difficult for him to walk. He is able to "push it back" but I worry about it! Still considering CTCA if Tarceva doesn't work, as well as a second opinion at MA General (he's being treated at Dana Farber in Boston). Too many things still "undone" right now and finances are very difficult but we want to try to travel to South Dakota to see grandchildren, two of whom we've never met. Oxygen on flights is a real barrier and we need to do it fast while he can tolerate it. Our minds are spinning. Sandy Quote Link to comment Share on other sites More sharing options...
ginnyde Posted March 12, 2006 Share Posted March 12, 2006 I am so sorry the news is not good. I hope Jim finds relief from his many problems and that the drs. give him a plan for the future. Get on that plane and go see those wonderful grandchildren. Quote Link to comment Share on other sites More sharing options...
Ry Posted March 12, 2006 Share Posted March 12, 2006 I hope the tarceva works for him as well as it has worked for others. It sounds like you are doing a good job advocating for him. Quote Link to comment Share on other sites More sharing options...
Patkid Posted March 12, 2006 Share Posted March 12, 2006 Dear, We found it easier on Brian to 'help' the children with the airfare and have them come to visit us. The one time we did go (to the Florida wedding), for us, was a huge mistake. I think Jim is much like Brian in that he doesn't give in to being 'sick', but from experience: trips are very hard on a person in any kind of tx for LC. I just hope the Tarceva is a tx miracle for you and that Jim can keep pain, hernia, and constipation at bay. It seems that the cancer survivor is constantly under attack at so many different fronts. Slow down, let your head stop spinning and enjoy enjoy his wonderful fighting spirit and love for you and the children. Love Pat Quote Link to comment Share on other sites More sharing options...
karen335 Posted March 12, 2006 Share Posted March 12, 2006 Sandy, Sorry your having to go through this bumpy road. Have you considered John Hopkins? Hard to swallow there are no options. What about clinical trials. Sounds like Jim is still wanting to fight and is still pretty strong... Never, never give up. Keep searching. Sending prayers... ahugs, Karen Quote Link to comment Share on other sites More sharing options...
jorja Posted March 12, 2006 Share Posted March 12, 2006 I am sorry about the news. Glad that Jim is not giving up! My prayers continue for the both of you. love, jorja Quote Link to comment Share on other sites More sharing options...
Connie22 Posted March 12, 2006 Share Posted March 12, 2006 Sandy I am so sorry to hear about this. Where in SD do the kids live? That's where we live. If there is anything I can do, please let me know. Hugs and Prayers Connie Quote Link to comment Share on other sites More sharing options...
elnodel Posted March 12, 2006 Share Posted March 12, 2006 Sorry to hear your news -- I know our oncologist here in Connecticut consults regularly with someone from Mass Gen although our cancer center is actually affiliated with Dana Farber -- sort of gives us the best of both worlds, I suppose. I'm hoping that Tarceva will do its miracle stuff and that the pain/discomfort will remain at bay during treatment. Keep advocating for him -- as long as that's what he wants. And do think about getting your family to visit you instead of the other way around, unless he's really set on doing the visiting. It DOES make sense. Keep us posted -- we're pulling for you. Ellen Quote Link to comment Share on other sites More sharing options...
sharyn Posted March 12, 2006 Share Posted March 12, 2006 Sandy, I am sorry to hear this. I hope that an option finds itself to you... Your husband sounds like quite a fighter who is not by any means ready to surrendor!! Love, Sharon Quote Link to comment Share on other sites More sharing options...
Tiny Posted March 12, 2006 Share Posted March 12, 2006 A tough situation. It sounds as if you two are still seeking the light. I'll be praying that something works out for you and that you get to see important people in your lives, whether you go there or they come to you. Hang on. Quote Link to comment Share on other sites More sharing options...
Don M Posted March 12, 2006 Share Posted March 12, 2006 Sandy: I am sorry you and Jim are having a hard time now. Since Jim has not tired the tarceva, it seems like a good idea to ry it. The side effects are not too bad. I hope the tarcva works well for him and he gets ome comfort and you get outo meeth the grandkids. I don't know if he could tolerate another heavy chemo regime, but I have heard that if it has been over a year since you have tried a drug like carboplatin you can go back to it. And, I have heard that carbplatin with gemzar can be very effective for late stage cancer. Maybe you should try adding carboplatin and gemzar to the tarceva. Don M Quote Link to comment Share on other sites More sharing options...
MilliBr1 Posted March 12, 2006 Share Posted March 12, 2006 Sorry to hear this you are in my prayers. Quote Link to comment Share on other sites More sharing options...
shineladysue Posted March 12, 2006 Share Posted March 12, 2006 Sandy, I'm so sorry to hear all that you and Jim are going through. I'll be praying for a plan that works. Love, Sue Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted March 12, 2006 Share Posted March 12, 2006 Prayers for the best Sandy and Jim. Rich Quote Link to comment Share on other sites More sharing options...
joanie55 Posted March 12, 2006 Share Posted March 12, 2006 Hi Sandy & Jim, Sending my prayers to you both. Wondering if the kids and grandkids could come out to you. I know that children are sometimes the best medicine. Joan Quote Link to comment Share on other sites More sharing options...
michelepal Posted March 13, 2006 Share Posted March 13, 2006 Sandy, Praying for the best! Jim will be in my prayers.. Michele Quote Link to comment Share on other sites More sharing options...
dchurchi Posted March 13, 2006 Share Posted March 13, 2006 Sandy, Sending prayers to both you and Jim. Sorry you are going through this most recent ordeal. Quote Link to comment Share on other sites More sharing options...
bauner95 Posted March 13, 2006 Share Posted March 13, 2006 Sandy, I am praying for you and Jim. I am glad they are listening to you! I hope he will feel up to the visit soon. It really sucks that they are so far away. I am here if you need me. You know how to get in touch with me! Love, Kim M. Quote Link to comment Share on other sites More sharing options...
Nushka Posted March 13, 2006 Share Posted March 13, 2006 Sandy, Prayers coming for you and Jim. I am sorry you find yourselves in this situation. I hope a treamtment plan is developed soon. Glad you got his pain back under control. Nina Quote Link to comment Share on other sites More sharing options...
J.C. Posted March 13, 2006 Share Posted March 13, 2006 Sandy, Will pray that the Tarceva brings some good changes and that you can take the trip to see the grandchildren. Hugs Jackie Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted March 13, 2006 Share Posted March 13, 2006 We also will hope and pray that the Tarceva will help. Quote Link to comment Share on other sites More sharing options...
Inkerdoodler Posted March 13, 2006 Author Share Posted March 13, 2006 We wish there was an alternative to our traveling but it's not likely to happen because his daughter is again pregnant.. now with TWINS. They already have 3 kids ages 5,2,and 1. Cost of bringing them here would be more astronomical than our going there. No bargain fares to SD! Frankly, in the two years since he was diagnosed there have been opportunities for her to come here, but her own priorities/issues have always taken precedence. It may be her form of "denial" but it's hard for him to understand. Still he tries to be loving and supportive of her choices. We talk regularly on the phone and email, and use the computer "camera" but you can't hug the kids that way! As for treatments, they say his cancer is now "resistant" to chemo and it won't work (they say they don't want to 'make him sicker.' Have not asked specifically about Gemzar. Still considering second opinion at MA General. Jim's getting 'paranoid' that his docs have an "agenda" and would communicate that to docs at MA General. I think the docs think we are just not facing reality... but we just want to continue to fight with all the arsenal available to him! (HIS choice!) - I will support whatever decisions he wants. He had a good weekend and spent yesterday with his son, wife, and 1 year old granddaughter bringing lots of smiles... even ate a little steak on the grill! Sandy Quote Link to comment Share on other sites More sharing options...
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