Debaroo
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Posts posted by Debaroo
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Don, I'm not sure if my memory serves me correctly, but I believe that headaches are a possible side effect from Iressa-which I know Lucie is now taking. The MRI is a good idea, but has the doc ruled out or considered the side effect possiblity?
Please take care of yourself, and know that you and your Lucie are in my thoughts and prayers. Keep us posted. Deb
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I really liked it. Deb
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Carol, I just wanted to let you know that I am so glad that we got to talk yesterday. You really impressed me with your strength and assertivness with the doctors. I know this is so hard right now. I really believe that, seeing as how Iressa has so fewer side effects than chemo, it is something that Gene would be able to handle, and since it can work wonders, it is definatly worth giving it a chance.
Please feel free to call me, whenever you want to. It is so great that your friends have been able to help you with your medical concerns, especially where the doctors have not!
Please keep in touch, and if you don't mind, I would like to call you and keep in touch with how Gene is doing, and how you are doing.
I am so glad that we talked. Take care and continue to follow your gut. I am sorry that you have needed to be so assertive with the doctors, it shouldn't be that way, but it is wonderful that you were able to. You must be so tired. If there is anything I can do, even if you just need to vent, I'm here. Take care, Carol. You and Gene are in my thoughts and prayers. I will talk to you soon. Deb
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Gail, Newsday just had a small article regarding the use of Celebrex with chemo. We've talked to my dads onc. in the past about trying it, but he said it wasn't 'proven'... Friday Dad took the article in with him and he left with a perscription. If you'd like a copy of it, I could mail it to you. I forget if it was in Mondays paper, or the week before. If you want me to find out, I could call my parents tomorrow and message you the info.
I really figure its worth a try. If it has worked for some people, why not Dad? Take care, and keep us posted, Deb
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Shellie (and Jay) I believe in God. And haven't thought about NOT believing...even after my dad and mom were diagnosed with cancer. Heres how I see it.
1. If God doled out illness as punishment than Hitler and any other evil person-child abusers, murderers, etc. would have not only gotten cancer, but leprosy and any other awful disease you can think of.
2. Even though both my parents are sick, I STILL consider myself damn lucky, because I had them for my parents to begin with. They're wonderful people, and gave me the best life they could. They weren't perfect, but they were great parents. I would look at my friends families and be so grateful for mine, and I STILL DO! I can't bury myself in my sorrow that my parents are sick or lie next to them when they do die. It would be an insult to them and the love that they have for me. And, since I am a believer, it would be an insult to God to not be grateful for letting me have them as parents in the first place.
Blaming God is sometimes a natural thought, but we must remember that there are so many people that have worse things happen to them, that NEVER HAD A PARENT THAT CARED-let alone to loose one. And I'm going to be angry at God because I didn't have mine LONG ENOUGH!! No way! That is one gift horse that I will not look in the mouth.
Sometimes God answers our prayers in a way we don't like...sometimes he says 'no'...does it seem fair, no it dosn't. But here's the thing that I believe. We don't know the answers as to why things happen the way they do, but when we die-then it is all reveiled to us in technicolor!!
I used to work with people with severe developmental disabilities. My mom asked me 'Debi, why would God let people be born like this? Its so sad...why would He let this happen" I said what I believe to this day that people get sick or are born disabled to make US better people. We are ALL on this planet to help eachother. This message board is a WONDERFUL EXAMPLE of that. We come here to share knowledge, if it weren't for this board, and for a woman named Kerry that shared her experiences with her fathers lung cancer, I probably would not have known what Gamma knife was (the doctors NEVER mentioned it), and my dad never would have had that procedure (which was successful and had very minimal side effects) and I believe would not have done as well as he has. I will be eternally grateful to Kerry for having shared her knowledge. How sad would it have been if she were so wrapped up in anger that she weren't able to share her information or support here with us. It would not only be sad for us-who benefited from that information and support, but for her as well. I'm not saying it was easy, I'm not saying to shrug it off, stiff upper lip and all that....
I am saying that if all you feel is hatrid and all you feel is anger and all you feel is betrayal and bitterness-whether it is towards God, or doctors or whatever, than all you will be is that hatrid and anger and betral and bitterness...you don't have to believe in God. But whatever you do, you must see the good things that you have and that are possible for you. Otherwise, you are left sad and empty.
You don't have to believe in God, I find it comforting, but I don't think it is wrong not to believe...but think about it...WHY dont you believe? Is it because you didn't get what you wanted this time? or is there a deeper more philisophical reason? Because if you don't believe because you didn't get what you wished for, than, well...that's not a good enough reason.
I hope that you are able to come to a point that you will see that you WILL laugh again, that you CAN be happy...how would your mothers feel if they knew that you felt such dispare and are so wrapped up in anger that you aren't going to allow yourself to enjoy the life that, really, she gave you?
Keep us posted, and stick around...we need you. And if you need us, we are here. Take care, Deb
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Cathy, My father was on Iressa from January until June of this year. His side effects were so minimal-just dry skin, which mom got a great moisturizer for, and that was it. He was a bit tired, but there were really no side effects from the Iressa. In the beginning the Iressa worked, it shrunk in one lung two tumors and the other tiny tumor in his other lung remained small.
Although the Iressa stopped working for my dad, it was sooo worth trying. The fact that it dosn't have too many awful side effects is a definate bonus. My dads onc. told us that the odds of the Iressa working were just the same as the odds of another type of chemo working= forty percent (I believe the breakdown was it gave a twenty five percent chance of it not allowing the cancer to advance any further (which is not bad) and a fifteen percent chance of it "melting the cancer away".
I think that it is worth a try, especially if someone is in a weakened state.
Don, as far as Lucies vomiting, I've never read anything about that being possible side effect, But I believe the headaches are a possible side effect. In my opinion, the vomiting could be a side effect, seeing as how everyone handles medications differently.
I hope this was of some help to you guys. Cathy and Don, good luck...I think Iressa is something definatly worth giving a try!!! Take care, Deb
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I wanted my dad to go to Slone, too. But he liked his dr. too much...and it when we handled the brain mets with Gamma knife, we went to Mem. Sloane Kettering in Mercy hospital in Nassau county. I must say that what I like about Sloane is that from research my sister and I did, it seems that they see more LUNG CANCER patients in a month than many onc. see in a year! So we figured they'd have the most up to date treatments. If your dad is up to it, a second opinion wouldn't hurt. Keep us posted, and good luck. I live on Long Island, not too far from you. Take care, Deb
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Dona, I am so sorry for your loss of your mother...I hope that, in time, your memories of her will bring you comfort. Deb
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Kathy, my Mom is taking paxil (she was diagnosed with ovarian cancer in April, had a full hystorectomy and is undergoing 'preventive' chemo, as a precautionary thing). My dad has not had any anti-depressants, but after seeing how he had lost so much weight due to his having NO APPETITE, and then seeing his complete 180 degree turn around after he met with his oncologist last friday...He didn't even realize how much his nerves were affecting him...he thought he just had no appetite due to going off the steroids since his brain mets in Dec.. Anyway, I think that the anti depressants are a good idea. I wish my dad would be more open to them. I think it would help.
It must be very frustrating to Tim to compare how he lived before and after the cancer Dx...and for you too. But sometimes an upswing is just around the bend. Just give it time. You are in my thoughts and prayers. Take care, and keep us posted, Deb
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Debi, take things slow...the more you allow yourself time to get back to "being yourself" the more of a chance you give yourself for that to happen. And as far as your sisters visit, you just had a major surgery not too long ago, maybe instead of going out and "painting the town red" she could help you out by 'painting your place'. You said you have alot of work to do, maybe she could give you a hand. Whatever you do, listen to your body, rest when you need to and try not to overdue it-or else you might set yourself back again.
Sorry about the pain meds. Maybe your primary care physician could help out with some type of pain management?
I hope all goes well with your new job offer, and that you are feeling up to the new challange when you need to. But if you can't, just remember that when a door closes, somewhere a window opens.
I love reading your posts, you have a great sense of humor and I enjoyed chatting with you a few weeks ago during the chat session. Long island is the same as usual...a deli/laundrymat/pizza place in every shopping center, and you still can't beat the bagels and pizza!!!
Please take care of yourself, Debi-enjoy your sisters visit, and keep us posted!!! Deb(i) too!
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Norme, I am sorry about the RFA, my Dads onlcologist said the same thing, that it would be done if he didn't have other mets, but he is keeping it in mind for the future. Maybe if the other mets are taken care of.
My Dad started chemo again last friday, he had his second treatment today. Although he has been weak after having the fluid drained from his lungs, and hadn't been eating, that is until last friday, his doctor started him on navabline (sp?) and said that it has a good track record with NSCLC, and the side effects are VERY MINIMAL, so he felt that even in Dads weakened state, he would tolorate it well. You might want to ask the onco. about this, and of course your Buddy.
Good luck, Norme, it seems that your Buddy and my Dad are in very similar situations right now. I must say that Dad has been eating normal again, and gaining weight. After all he'd been through in the past few months, we doubted that he'd bounce back at all, but he has/is bouncing back. Please try to keep your chin up. Sometimes a downturn can turn into a bit of an upswing around the bend. Take care, and keep us posted. Deb
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Ada, your presance has been missed. I am glad that you are home and good luck with the new clinical trial!!!! Take care, and keep keeping us posted. Deb
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Shannon, I can't tell you how your faith has restored my own. My faith tends to be a bit shakey at times, I guess this is normal, but since reading your posts-since the orig. message board, I have been able to put some real perspecitve on things. My dad has had so much faith in all of this, no bitterness toward God, no feeling betrayed or forgotten by Him. And between your posts and my dads feelings, I realize that too many times people sit around saying "why me" and being angry at God when something like Cancer rears its ugly head, but they fail to see that God has given them so much that is GOOD. And that is so sad. It is sad for the person who is bitter, and it is sad for God to not be appreciated for having given so many wonderful things.
Thank you for the perspective, Shannon. And may God bless you again and again. Your sharing your experiences with Your Mike have brought so much comfort and strength to so many people. Thank you for that. You are always in my thoughts and prayers. The road may be difficult, but it is so worth traveling! Take care, Shannon, and thank you, Deb
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Ry, I'm telling you, that stuff is AMAZING!!! I am so happy for you guys!!! Take care, Deb
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David, sorry that I didn't respond to your post sooner, but I was so FREAKIN' TIRED after reading it that I couldn't type
. Seriously, after reading about all that you are up to, I felt like I feel whenever I watch the opening of Indiana Jones, just watching all that physical action makes me exausted!! And just reading of your busy schedule, makes me exausted-and in absolute AWE of you!! You, David P, are our own Indiana Jones!!! You RULE!!!! YOU DA MAN!!!
WE LOVE YOU!!!! Take care, Deb
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Carol, I don't know about the cough-but I just wanted to say that I agree that the doctors must be more willing to try things to help your husband out. I know that when my dad started coughing then his breathing started to get worse and then he ended up in the hospital to have his lungs drained of fluid.
The cough is gone now. Maybe an x-ray would help, they would be able to see if there is any fluid that may exaserbate the problem. I know that a routine x-ray would have shown the fluid before my dad got to such a bad point with the fluid-and I am keeping this in mind if he begins to show signs of it again.
I know all to well about the lack of eating also, and that is scary in and of itself. But if something could be done about the phlem, I am sure that it would help in all areas, including the eating.
I am sorry that I couldn't be more helpful. If there is anything I can do, please let me know, neighbor. Take care and keep us posted about how Gene is doing, and you too! Deb
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Thank you all so much for your kinder than kind responses, and for the support!! I am glad that posting the experience was as much of a moral booster for you guys as it was for me!!! I was more than happy to share this experience with my family here!
Oh, and I just wanted you guys to know that Daddy has gained 4 lbs since friday!!!
:D Thank you again for your responses, I really got a kick out of them!!! That warm fuzzy feeling is just sooooo welcome!!!
Take care everybody! Deb
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Today I went with Dad to the oncologist, we saw Dr. G, who has been the dr. that has worked closest with my dad since his Dx in Jan 2002. (Dr. L was the one in the hospital, and the one that told me on the phone that chemo would depend on Dads quality of life, but we'll see, BLAH!!)
Anyway, when we got there Dad got weighed in and he is down to 148lbs, NOT GOOD
. Dad and I were talking about his not eating while we waited to see Dr. G, and he said that food tasts bad, and he just has no appetite...he can't force himself, etc.. And he also said that it worries him that he is loosing so much weight. So I told him that he really has to try, and made a mental note to ask the Dr. if they'd tried Megace.So Dr. G comes in, listens to dads breathing and comments that he looks good (he does, its really weird), then asks dad how he feels, and Dad says "Doc, I tell ya, I feel pretty good...I mean, I AM weak, but I'm feeling better since I got the lung drained...my breathing is better, but I just can't eat." he's so sweet, really. My dad is so honest and trusting. He just does not complain, he takes all that he is going through and always figures that it could be worse, he's not in any pain (thank God) and is just tired and weak (FOOD WOULD HELP).
I asked the Dr. about the megace, and he said that it was the first med they tried to increase his appetite, and it didn't work. So I brought up the point that dad was so sick from the fluid buildup in the lungs, and he was sleeping all the time, and did he think that, maybe, it would be worth it to give the Megace another shot, seeing as how dad is feeling a bit better and breathing and not sleeping soooo much. The dr. said that I brought up a good point and that he agrees, it would be worth it to give it another try, seeing as it has a good success rate. (I love that he listens to you, and talks to you as if you were a peer-he is truly amazing)
Anyway, Dr.G says "well, you look really good. We're going to start you on Navabalene, I really think that you tolerate it well. It has a good track record with the type of cancer that Dad has, very few side effects and is done in a 1/2 hour session, one day every week. Then he asks dad, "You're getting stronger, and I really think you will tolerate it well...plus, a half hour session every week is nothing compared to past treatments you've done..." To which Dad replies "a half hour, Doc, I could do that standing on my head...whatever you think is best, doc. Really, I trust you."
Dr. G says "how would you like to start now? I'd really like to send you home for the weekend knowing that you've got something in you to fight the cancer." so, in went Dad...he wasn't even SCHEDULED for chemo, but Dr. G put him right in.
When dad got into the treatment room, the nurses were both happy and sad to see him...they laughed and joked with Dad, saying that he was jealous that Mom was getting all of their attention, and Dad really got a kick out of the reception they gave him. And he's always so agreeable and pleasant, genuinly glad to see everyone and really likes them. The Doctor was joining in in all of the good natured ribbing, it was such a pleasant environment.
The funny thing is, that my Dad changed...I could visibly see a change in my Dad as soon as Dr. G started talking to him...I really think that Dad thought the Dr. would tell him that there was nothing more they could do. But when the Dr. started talking and was so positive and PRO ACTIVE!!!! Dad was the same as he was when this whole thing started last January, and he hasn't been like that in a while.
I caught up with the dr. in the hall as dad got treatment and asked him about the liver mets. He said that they could have something to do with his lack of appetite, too. I asked about radiofrequency ablation, and was shocked that I knew about it (thank you LCSFC message board), and asked if it would benefit dad. Dr. g said that it is usually used for colon cancer, but that it is being used in treatment of other cancers and mets to the liver, he continued to say that it was "good research' on my part, and that he would keep it in mind for dad...but for right now, with all that he's been through, they will moniter him closly and in the future, he would send Dad for it if necessary!!! He has sent other patients for it. Imagine that AN OPEN MINDED DR. THAT ACTUALLY INCLUDES YOUR FEELINGS AND IDEAS IN TREATING HIS PATIENTS!!!!
Anyway, during treatment dad said that he was hungry, and I wanted to get him something to eat, but he said he'd wait until he was done. Normally this hunger feeling is fleeting, whether or not he even takes a bite of food. But when we were leaving the office he said, "Deb, I tell ya, I feel like having eggs, and bacon and hash browns." and I said, "so when we get home you and mom should go to the diner" and he said "you know what, I think we will" (he has not wanted to go out to eat in MONTHS!!!!)
And do you know what???
They DID go, and dad ate THREE EGGS, some BACON, TOAST AND HASBROWNS!!!!!!!
I am ssooooooooooo happy!!!Then for lunch he ate lentil soup and noodles, then he had some devil dogs and after dinner he wanted ICECREAM!!!
I really believe that this poor mans nerves were doing such a number on him, and HE didn't even realize it. I mean, he has been getting by on a small bowl of cereal and a bite of toast every day for WEEKS AND WEEKS!!!
I am so sorry that this post is so long. After the appt. and after I dropped dad at home and they were leaving for the diner, I went to the gym and was literally walking on air!!! My dad never thought he'd eat again. He'd watch the cooking shows and say "will I ever eat normal again?" he didn't think he would.
I just want to thank you all for being here. I don't know what will happen, but the fact that the Doctor is taking action and that Dad is up for the fight and EATING has me sooooo elaited!!!
OK, OK, I'm done. Just wanted to update you with more detail than you need
, because I know you guys have nothing better to do but sit at your computer and read MY post 
. So sorry this is so long. I'll stop now. Take care, Deb -
Christina, I am so sorry for your loss...I can only say that you must not jump too far ahead of yourself. It is overwhelming enough as it is to cope with the death of someone that you loved so much, but to try to forsee the future is too much. Try to take things one day at a time. As Don said, grieving is a process, and you must allow yourself that. It is different for each person, and there is no right or wrong way to do it. It is what it is, and you feel what you feel and you have every right to those emotions.
Maybe, in time, you can join a bereavement group. Sometimes you just need to talk to other people who have some idea of what you may be going through. Come here and vent and grieve, we are here for you. Consider this a safehaven, if you will. I cannot imagine what you are going through. Right now you must allow yourself to feel the way you feel. Give yourself persmission to breathe, take things one step at a time.
We are here for you, take care, Deb
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Gianna, I am so sorry for the loss of your father...please offer my condolences to your mother. I hope that your mother will return to the boards when she is up to it, as she has offered support to so many here.
It is so wonderful that you have such fond memories of your father, may they serve as a comfort to you all. Deb
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Hi Colleen, sorry I am late, but welcome to the board
My dad was on Iressa from January to June. It was still a clinical trial when he started, and had just been approved in May I think. This is why your dads oncologist might not know if the Iressa can be taken in conjunction with chemo...because during the clinical trial the Iressa couldn't be taken in conjunction with ANY other form of treatment (this included radiation and Gamma knife radiation-which my dad had the latter for three brain mets in December.) He was able to continue the Iressa two days after the Gamma knife, but the rules were very clear that it was under NO CIRCUMSTANCES to be used with any other treatments.
I hope that this was of some help. The Iressa did work for dad for a little while, but then stopped. But that does not mean it won't work for your dad! To quote my dads oncologist "when that stuff works, it WORKS!"
Good luck to you and your dad and family during this trial. It is difficult but NOT IMPOSSIBLE!!! Take care, and keep us posted, Deb
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Mary, my suggestion is that you read your own signature line!! You and your family have suffered enough loss to lung cancer-don't give the cancer a helping hand. Look at you family. Take care, and good luck. I KNOW it feels impossible, but it ISN'T...
YOU CAN DO IT, MARY, I BELIEVE...I AM CLAPPING MY HANDS AND SAYING "I BELIEVE THAT MARY INMAN CANNOT BE CONTROLLED BY NASTY BUTTS!!!!"
Take care, and please keep us posted as to how you are doing. Deb
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HOORRAY DON AND LUCIE, yes, Don, God is Good!!! Even when we don't believe He is, we should remember that God is Good without the extra O. Take care, I could hear the smile in your post!!! Smiling right back atcha'. Deb
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Rosanne, you, Gianni and your family are in my prayers. I am glad that you were able to take him home; to make him comfortable; to be in the place and with the people that love him most. We are here for you, if you need us. I am so sorry. Deb
I really liked it. Deb
:D 
. Dad and I were talking about his not eating while we waited to see Dr. G, and he said that food tasts bad, and he just has no appetite...he can't force himself, etc.. And he also said that it worries him that he is loosing so much weight. So I told him that he really has to try, and made a mental note to ask the Dr. if they'd tried Megace.
cancers back and pneumonia too
in GENERAL
Posted
Shelly, I am so sorry that things have takens such a bad turn. Is it that her lung collapsed, or is it full of fluid (when my dad had this happen they called it a collapsed lung, but it was really that the lung was full of fluid and needed to be drained-they drained it and placed talc in it =i forget the name of the procedure) maybe that is what is needed, are they able to do anything for the collapsed lung?
I just hope that you know that I am thinking about you and am glad that you came back and posted and hope that you continue to do so...
Deb