kimblanchard Posted August 8, 2004 Share Posted August 8, 2004 Some of you may remember in late June I posted concern about my husbands severe leg pain due to 3 damaged disks. Also I was upset because my daughter had a nodule on her thyroid. Now the nodule that was 6mm in my remaining right lung a year ago is now 5cm. The onc. says the radiation didn't kill it, personally I think they missed the target and got the good tissue. I am getting more short of breath on a weekly basis. The onc recommended carboplatinum and taxol but didn't promise it would shrink it and also warned me of the side effects. Dec 2001 I had 2 rounds of those 2 which shrunk the nodule in the left lung a SMALL amount but I still had the enire lung removed. also at that time I was healthy and strong- now I am a far cry from that. Elaine, Dean Carl and others who have done nothing, I would appreciate your candid thought now. Would you change it if you were do start over?? And those who have discontinued treatment, how do you feel about it? I lost one lung to surgery and have had radiation on this and can't decide whether to risk chemo or not. I am seeing another onc. the 23rd. She is associated with the same Cancer center but located in another part of Kansas City metro which is much closer to my home. Need to decide by then. In the meantime my daughter had 1/2 thyroid and walnut size nodule removed but thank God it was benign. July 6 my husband had a heart attack and on the 7th had an angioplasty and threw an embolism. He had a follow up with the cardiologist Thurs Aug 5 and a chemical stress test the next day we don't know the results. The leg pain continued to increase and he was hospitilazied 7/6-7/10 and then transferred to a Rehabilitation Hosp until 8/5. I was driving 80 mi daily and that in itself is very tiring. Now he is home, can't walk a step, is in a wheelchair and I am up several times a night with him. His daughter-in-law from Mich is here for another week. Then after a few days break her husband is coming for a few days and end of month another son for a few days, All to help. My son and family are in town and do what they can, mostly caring for a large lawn etc. My single daughter did not get her teaching contract renewed due to budget cuts and she wasn't tenured so she will be going to school at night and substitute teaching. This week we decided it would be best all around if she moved in with us. Will save her paying rent and she can help us. That won't happen for another monther, probably. My big consideration with chemo is that it will make me too sick and I am doing well to care for Bill now. If I do chemo I probably won't be able to do that and who can care for both of us. Would we be better off for me to avoid chemo and make the most of the days I have???? Bill may eventually be able to have disk surgery but not this close to the angioplasty. we may both end up in a nursing home. Your input would be appreciated. Also how do I add my latest test results to the board? I can't figure how? Sorry to be such a drain on the board. Quote Link to comment Share on other sites More sharing options...
Guest bean_si (Not Active) Posted August 8, 2004 Share Posted August 8, 2004 I have no advice but I wanted you to know you and your family are in my prayers. I think this is too much for any one person to handle. I hope others can be more helpful. Cat Quote Link to comment Share on other sites More sharing options...
luvmydog2 Posted August 8, 2004 Share Posted August 8, 2004 Sorry to hear the news. I wish I could offer you some advice. I think this is a decision that you have to make on your own. Chemo acts differently on different people. I don't know what I would do in your situation but I would probably go for the chemo. If it did make you sick then you could always stop. Who knows, you might go through just fine. Whatever your decision, the people here will stand behind you. Keep us posted. I notice you hadn't posted in a while. Good luck and God Bless. Quote Link to comment Share on other sites More sharing options...
luvmydog2 Posted August 8, 2004 Share Posted August 8, 2004 Also how do I add my latest test results to the board? I can't figure how? Sorry to be such a drain on the board. First of all, you are not a drain on the board. To update your test results clik on PROFILE at top of page then scroll down to your signature and add to it. When you are finished clik SUBMIT and bingo...you have it. Quote Link to comment Share on other sites More sharing options...
betplace Posted August 8, 2004 Share Posted August 8, 2004 BLT I have no advice my dear. I just want you to know that you are in my prayers and that we care about you. Hopefully that will help a little in bearing your very heavy burden. You are not and could never be a drain on this board. We are not here for sweetness and light, we are here to deal with a deadly disease and all the pain and uglyness it causes for us. That we all manage to do it with such dignity is amazing to me at times. Blessings Betty Quote Link to comment Share on other sites More sharing options...
ginnyde Posted August 8, 2004 Share Posted August 8, 2004 Dear BLT, The only drain on the board is when we don't hear from you and we worry about you. Ry has a long list of people's home telephone numbers, so that when you disappear from here for awhile, she calls you and let's us know how you are. You can either PM me or Ry and give that info if you want. As other's have said, what you do has be be your choice. I think talking to the other doctor may give you more information to help make that decision. Carbo/Taxol is a heavy duty chemo, but many have tolerated it well. They may also have a less toxic chemo that may help you. Your plate is too full to carry. I am so glad that children are coming to help, it is important that they know you absolutely need their help, you can not do this alone. Keep us posted. We will all be praying for both you and your husband. Quote Link to comment Share on other sites More sharing options...
Elaine Posted August 9, 2004 Share Posted August 9, 2004 mistake Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted August 9, 2004 Share Posted August 9, 2004 BLT,I think only you can decide what is best by listening to your heart and gut.As for me I had left lung removed in June 03 and had mets to right lung in Oct 03??.I opted for 7 rnds chemo(carboplatin &taxol) and 35 radiation treatments at same time.Side affects were bad(allergic reaction to platin,blood cts way down,etc,etc)but the bottom line is tumors were shrunk way down to hardly show on CTs,and have stayed that way since Jan 04.I'm now on o2 but doing pretty well.I work in yard,shop,golf,fish,get around pretty well considering.Don't know how long it will last but so far its been worth what I went thru. Quote Link to comment Share on other sites More sharing options...
-Cheryl- Posted August 9, 2004 Share Posted August 9, 2004 BLT, I am sorry about the growth of the nodule. You have good reason to be discouraged, but you sound defeated my friend. I am currently doing a trial, in which the delivery system is more precise . the cancer gets hit double hard. It is Carboplatin and Docitaxol. It is too early to tell, but not many side effects. I will keep you posted on it. I am hoping the hair doesn't fall out! Ha! Don't give up, we have some good efective teatments out there. Cheryl Quote Link to comment Share on other sites More sharing options...
brm1949 Posted August 9, 2004 Share Posted August 9, 2004 Prayers your way BLT. Quote Link to comment Share on other sites More sharing options...
Elaine Posted August 9, 2004 Share Posted August 9, 2004 Bonnie So, so glad to hear from you! I was worried about all three of you! Happy to hear that your daughter's nodule was benign. It's good your kids are rallying behind you but I know you are the primary caregiver and that takes a lot! Bonnie, I really can't advise you what to do. It's up to you, after consulting with the Drs. You have tried that chemo before and you know what your individual side effects were and the benefits. There may be other chemos to try--maybe some gentler ones. Also are you on oxygen, now? If so, be sure to ask how the chemo will effect your breathing. As far as me--I am beginning to slow down some. I try to get some things done earlier in the day because I am beginning to wear down--and my legs are getting weak. Humidity bothers my breathing stamina, too. Again, welcome back! Pls keep me posted. I also hope your husband can get some improvement. Love to him, too. love and fortitude elaine Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted August 9, 2004 Share Posted August 9, 2004 BLT, Sounds like you have a lot on your plate. Maybe you can get a lower dosage of chemo? I think Elaine makes sense... Wishing you luck. XOXOXOXOX Prayers, always MaryAnn Quote Link to comment Share on other sites More sharing options...
sharyn Posted August 9, 2004 Share Posted August 9, 2004 The only advice I can give you is to follow you heart... usually it doesn't steer you wrong... I will pray for you to reach a decision you are comfortable with. Love, Sharon Quote Link to comment Share on other sites More sharing options...
Fall54 Posted August 9, 2004 Share Posted August 9, 2004 BLT, Wow!! What a plate full you have. My personal opinion is that you try the chemo and stop if you need to but you know the only one that can make that decision is you. I sense you dont want to give up on the chemo but are concerned that you will not be able to care for your husband. I admire your putting him first but you also need to deal with your own health problems. I know how much you love him but dont forget he loves you too and probably wouldnt want to see you give up your treatments. Have you two talked about it? All in all it's your decision and one that shouldnt be taken lightly. I pray that you search your soul and come to what ever decision is right for you. Your family is in my prayers. God Bless You All, Jane Quote Link to comment Share on other sites More sharing options...
DeanCarl Posted August 9, 2004 Share Posted August 9, 2004 Bonnie, I'm sorry I didn't post earlier but wanted to give some thought to my answer. To directly answer your question about regrets. I regret I ever got this disease, but have absolutely NO regrets about the decision I made on treatment. I'm comming up on 11 months since my dx and there is nothing I would change. That being said there are a couple of things I would suggest. One is to NOT make decision until you have all the facts. See what this other onc has to offer. Ask about different chemo plans and what meds are available to help with the side effects. What is Bill's prognosis for his recovery? Will he be able to do more for himself as time goes on? What are the possibilities of getting in home help from an agency in your area? These are all things that you can find out BEFORE you try to decide what to do. Remember that not getting treatment does not mean you won't get sick. I'm pretty much housebound now and am unable to do much of what I used to. I am also on pain meds now and, even though it's a very low dose, by the end of the day I'm pretty foggy headed. For me and my situation that's not so much a big deal, but might be for others such as yourself. Finally ... when I made my decision I had to get below all the outside "stuff" and get to that place deep inside where the real Dean lives. That's the place where the answers to all my questions are. It can be a REAL pain in the butt to get there sometimes with all the "noise" the world throws at us. But it is essential, at least for me, to get there BEFORE I make any major decision in my life. If I make a decision without going there first to see what I REALLY want I envariably make the wrong choice for the wrong reasons. You have a lot going on right now. Try to find some quiet time. Not only from the world outside, but from all that noise that builds up in our own minds when everything hits that fan at the same time. Dean Quote Link to comment Share on other sites More sharing options...
karen335 Posted August 10, 2004 Share Posted August 10, 2004 BLT, I am so happy to read your daughter's results were good. I wish I had an answer for you about what to do. The only suggestion I can make is listen to your body. You know how strong you are and what you can and cannot endure. Whatever decision you make, remember we are all here for you. You and your husband are always in my prayers. Please let us know how you are doing and what decision you have made... Gos Bless, Karen Quote Link to comment Share on other sites More sharing options...
Margaret Posted August 11, 2004 Share Posted August 11, 2004 First if all, I am overwhelmed with the thought of all that you are dealing with. I would not be making any decisions until you really have the opportunity to hear the possibilities with your new oncologist and then whatever is decided is still not absolute. You can later decide that you no longer want to do treatment OR you can decide that you do want to try treatment. I think you will find the answer from within your heart and I know that you will be guided in your decision by God. I'll be watching for your future posts. Blessings, Margaret Quote Link to comment Share on other sites More sharing options...
SJAS Posted August 11, 2004 Share Posted August 11, 2004 I am so sorry about all the struggles you have to deal with at the same time. Any one is more than enough. I agree, that you must dig deep and make your decision. The only advice I will add is something our onc. told us when we were being pulled in two totally opposite directions about the brain tumors (oncologist vs. brain surgeon). He told us that we had all the facts and that it was now up to us to make a decision and not look back. There is no way of every knowing that if you had gone in the other direction that things would have turned out differently. Thinking of you. Quote Link to comment Share on other sites More sharing options...
J.C. Posted August 11, 2004 Share Posted August 11, 2004 BLT, Glad for your daughter, sending prayers for you and your husband. J.C. Quote Link to comment Share on other sites More sharing options...
norme Posted August 11, 2004 Share Posted August 11, 2004 Bonnie, Well, it sounds like you have done some deep thinking and you probably already know what and how you want things to go so follow your heart on this one. Only you have the right decision. YOur plate sure is full right now and am glad your daughter is moving in. That will be a lot of help for you and your husband. Quote Link to comment Share on other sites More sharing options...
Melinda Posted August 12, 2004 Share Posted August 12, 2004 Bonnie-- I wish I could offer some advice that was worth having... My heart goes out to you. Please know that you and your family are in our thoughts and prayers. Melinda (and Geoff) Quote Link to comment Share on other sites More sharing options...
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