London Lad Posted August 27, 2004 Share Posted August 27, 2004 Firstly I'd like to thank from heart the organisers/moderators/contributers to this exellent site. It gives information, comfort and hope in equal measure. My dad is 73 and was diagnosed with NSCLC stage IV in April 04. The doc he was initially seeing, who turned out to be a terrible carer, gave dad 6 months, and laid out the 'no treatment, no hope' option as a serious option to consider. I realise I'm not the one to have go through with treatment but dad just didn't want to sit back, and die according to the statistical average. So I got dad to an expert centre, where the docs turned out to be wonderful. He's had 3 cycles of chemo - carboplatin, vincristine and mitomycin and is now being rested. The scan he had 3 weeks has shown that the mets on his liver have responded signifcantly, not disappeared completely but the doc sounded very pleased with this result. The primary tumour on his left lung is much the same as it was nearly 6 months ago. Dad's breathing is probably better than it was before treatment and his pain is completely controlled by the same dose of oramorph he first started 6 months ago. Has anyone else here heard of similar results i.e. no change to the primary tumour but a reduction in liver mets and if so, what your thoughts are on this news? He has lost a lot of weight which worries me, although this seems to have stablised of late. Dad has also been on high dose vit C, selenium, beta-carotene, bromelain and a mushroom extract since diagnosis. Any comments would be very gratefully appreciated. Thank you. Sean Quote Link to comment Share on other sites More sharing options...
TeeTaa Posted August 27, 2004 Share Posted August 27, 2004 I don't have any advice, but I want to welcome you to this site. It sounds as if you are an excellent advocate for your Dad, and that is so very important in this battle. You've got lots of new friends here, so be sure to let us help in any way we can. Blessings, TeeTaa Quote Link to comment Share on other sites More sharing options...
Angie Daughter of Bill Posted August 27, 2004 Share Posted August 27, 2004 Welcome Sean! I hate that you have a need to seek us out, but glad that you are here. As far as the questions that you asked, I don't have any answers. We will support you in any way that we can. Glad you are part of the family now! In my thoughts and prayers~~~ Angie Quote Link to comment Share on other sites More sharing options...
jamie Posted August 27, 2004 Share Posted August 27, 2004 Sean, Hello and welcome! It sounds like you and your Dad are doing everything right, and the great additude your dad has is going to help him tremendously! Keep in touch and keep us posted! Welcome again Jamie Quote Link to comment Share on other sites More sharing options...
Don Wood Posted August 27, 2004 Share Posted August 27, 2004 Welcome, Sean! Thanks for sharing your dad's situation and look forward to updates. I can't help with the liver mets, but it is super that they have shrunk. If the lung tumor hasn't grown, that is a good thing. Stable is good. I had to chuckle that you list mitomycin, an antibiotic, in the things your dad is taking. I was in a chemical research group at Wayne State U. in Detroit, Michigan, back in the early '60's that were working on the spacial structure of mitomycin. I had not seen that listed anywhere until now. I hope it is effective for your dad, along with the other treatments. Best to you. Don Quote Link to comment Share on other sites More sharing options...
ginnyde Posted August 27, 2004 Share Posted August 27, 2004 Hi Sean, My son's name is Sean so I like you already. I am so sorry about your Dad but so glad you got him to a dr. that knows all life has value and is worth fighting for. My husband lost a lot of weight in the beginning but gained most of it back as time went on. Stable is our second favorite word here, the first is NED. Stay in touch. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted August 27, 2004 Share Posted August 27, 2004 My hubby lost 20 pounds, then gained it all back plus 15 more. Your situation sounds positive - you are gaining ground. Hang in there and keep on going. Best wishes, Margaret Quote Link to comment Share on other sites More sharing options...
J.C. Posted August 27, 2004 Share Posted August 27, 2004 Hello Sean, Have no advice, but a warm welcome for you. Keep us posted on the progress of your father, he already had some, reduction of the mets on the liver and no progress on the tumor in his lung. Hugs J.C. Quote Link to comment Share on other sites More sharing options...
TAnn Posted August 28, 2004 Share Posted August 28, 2004 Hi Sean and Welcome! Like Ginny, my son's name is also Sean, so you have 2 on your side! The news on your dad sounds like it is all good news so far. Like Don said, stable is good! I can't answer the questions you have posed, but hope to see updates on your dad as you get them. Glad you found us. TAnn Quote Link to comment Share on other sites More sharing options...
SJAS Posted August 28, 2004 Share Posted August 28, 2004 Hi Sean, My sons are Alex & Scott, but I like you anyway Anyone who has jumped right into the cancer fray and taken such assertive, progressive steps is awesome. So happy your dad is doing so much better - he'll show that first doc a thing or two. About the weight loss - Steve's weight is down over 40 lbs. from his original weight, but that is about 15 lbs. more than he weighed during his first rounds of chemo and radiation. Make sure you keep putting food out for him. Sometimes they just don't feel hungry, but if it is there, they will eat some. Steve is diabetic, but when he was losing 5-8 lbs per week, his doc told us to give him whatever he would eat. Sometimes it seems that sweet stuff goes down better. (I think Lance Armstrong said the same thing in his book.) There are also cancer cookbooks that include info on treatment symptoms and how to deal with their effect on appetite. The one we have also has recipes which might be more palatable for cancer patients. Keep in touch Quote Link to comment Share on other sites More sharing options...
luvmydog2 Posted August 28, 2004 Share Posted August 28, 2004 Hello Sean, Have no answers to your questions, but a warm welcome for you. I lost 18 lbs in 6 months before my dx so I can't help you there and I didn't have any mets anywhere else so I can't help you there either. You have just joined a wonderful, loving and careing family here. We will cry with you or share a laugh with you whichever you need. If you just need a shoulder to vent on then by all means drop in on us. We have chat on Tues and Wed and usually Friday. Stop by and let us say "Hello." Keep us posted on the progress of your father. Quote Link to comment Share on other sites More sharing options...
MJ Posted August 28, 2004 Share Posted August 28, 2004 hi sean, welcome to the board. i'm happy to see that your father is responding to treatment. as for your question with the liver mets/no change to the primary tumor. i don't have experience with that exactly, but i can say that everyone responds to treatment differently. what's good to hear is that the chemo has helped with your father's liver mets while the primary seems to remain stable. also, your father has had only 3 rounds of chemo (i'm assuming that he's going to have 3 or so more), so he may continue to respond to the treatment, and you may see shrinkage in the primary tumor. when my mom got scans after her 4th round, there was only slight change (some of the smaller tumors in her lung shrunk or were gone, but the primary shrank only a tad bit). however, her scans after her 6th treatment showed significant shrinkage/disappearance of the a lot of the smaller tumors, and the primary went from 3 inches to 2 inches. so you just have to wait and see how your father responds to the treatment. sounds like the treatments are working so far, so that's a good thing. if you are worried about your father's weight loss, as his onco about it. if the weight loss is significant, he may prescribe something to help your father increase his appetite. regardless, i'm always nagging my mom to keep eating, and she eats three regular meals a day, but i squeeze in a few snacks here and there to make sure that she keeps eating. my thoughts are with you and your family. please keep in touch and ask any questions you may have. God bless, mj p.s. i'm assuming you are from london due to your "name." oh how i love london! it's such a beautiful place! Quote Link to comment Share on other sites More sharing options...
paddy Posted August 28, 2004 Share Posted August 28, 2004 Hi Sean, Welcome to the board. Your Dad sounds as if he has a great attitude and they say attitude is 50% of the cure! Nice that he has you in his battle ground too! Paddy Quote Link to comment Share on other sites More sharing options...
Nushka Posted August 28, 2004 Share Posted August 28, 2004 Sean, It sounds like you have things well under control on your end. Stable is good, shrinkage is great...next in line is NED(no evidence of disease). I am sorry you had to seek us out but glad that you found us. We will be here for you. Just let us know what you need (prayers, hugs, information). Nina Quote Link to comment Share on other sites More sharing options...
London Lad Posted August 28, 2004 Author Share Posted August 28, 2004 For all the responses to my message, thank you, I'm very touched. I shall feedback the thoughts and comments from all of you tomorrow when I see my dad (I am indeed from London, UK). Humanity shines brightly indeed through the folk on here. Quote Link to comment Share on other sites More sharing options...
elnodel Posted August 29, 2004 Share Posted August 29, 2004 Dear Sean, I also want to add a warm, if belated, welcome to you (I'm very bad about catching up with new posts due to my clanky, slow old dial-up computer). And I'm delighted you got your dad away from that first "expert" and onto someone who can do something for him. Sounds as if things are beginning to go in the right direction for him...and with his fighting spirit and you behind him, the possibilities are endless. I also love London -- it happens to be my favourite city although I've become a real country mouse in my dotage -- spent more time in Somerset and Devon last time in the UK than in London. And I can't get my husband to go into London at all -- all he wants to do is hang around with friends in the countryside when we're there. We're planning a trip to Cornwall (off season) when he finishes all these treatments and is feeling up to it...he's a painter so a self-catering cottage in St. Ives or thereabouts sounds heavenly to him. Keep us posted about your dad's progress -- and perhaps we'll all get together in a pub to celebrate recovery one of these days! Ellen Quote Link to comment Share on other sites More sharing options...
patut Posted August 30, 2004 Share Posted August 30, 2004 Welcome Sean! It is a pleasure to meet you! Quote Link to comment Share on other sites More sharing options...
tnmynatt Posted August 30, 2004 Share Posted August 30, 2004 Welcome Sean! Adding you and your Dad to my prayer list. Take care. Quote Link to comment Share on other sites More sharing options...
Fall54 Posted August 30, 2004 Share Posted August 30, 2004 Welcome Sean, I dont have the answers you are looking for but I am sure someone does!! I wanted to welcome you and to let you know that I am glad you found this site. It is the best as far as I am concerned for support and information, friendship and family you will find on the net. Please keep us posted as to whats happening and as people read your posts and can offer encouragement, information or just be here for you to vent you will see what I mean by family. My prayers are with your Dad and your family. God bless you all, Jane Quote Link to comment Share on other sites More sharing options...
MayFrog Posted August 31, 2004 Share Posted August 31, 2004 Welcome, Sean Your dad is a lucky man to have you by his side!! Seems as though things are going well for him....everyone responds at a different pace. I agree with others who have said eating small amounts throughout the day is probably the best way to go, especially high calorie snacks....but i would mention your concerns re: the weight loss to his doc...there are several meds out there that work well with the elderly to increase appetite. Wishing you all the best, Mary Quote Link to comment Share on other sites More sharing options...
slinaresholz Posted August 31, 2004 Share Posted August 31, 2004 Hello Sean and welcome to the site. Glad your Dad is stable. Sometimes even junk food is good, just so he's putting some calories into his body. Maybe he could tolerate boost with ice cream and sliced bananas. They have a pill called megace that helps folks with cancer with their appetite. I seem to be eating like a pig myself. Maybe it is because I am home and bored and also not getting the exercise I used to. I had a few cysts on my liver but I guess that is very common. The doctor didn't seem concerned about it. Prayers for you and your Dad! Sharon Quote Link to comment Share on other sites More sharing options...
Guest Elizabeth Posted September 6, 2004 Share Posted September 6, 2004 Hi Sean I'm in London too. My dad lost loads of weight after his radiotherapy as his throat was too painful too eat. If he is still eating, but losing weight, I guess I would up the carbohydrates as much as possible (pasta, potatoes, non-white bread). If he has lost his appetite, it is just a matter of trying to find anything that he can eat. We tried everything - baby pasta, organic baby food, you name it, we tried to feed it to him - I told my dad that he had to try really hard to eat something 3 times a day, and to try to have a snack in between. Also, mornings seemed to be better - maybe try to get him to have a 3 course breakfast - porridge, boiled egg and fruit!! We also got Complan - that drink thing that has loads of calories in it - there are lots of them that you can get. The doctors also gave us yoghurty drinks in cartons that are for people with malnutrition!! Let us know how you are getting on Quote Link to comment Share on other sites More sharing options...
carrie Posted September 7, 2004 Share Posted September 7, 2004 Welcome Sean, I am so sorry about your dad. Very glad that you all did not accept the first doctor's prognosis and sought a second opinion. I do not have any answers for you but I encourage you to read and research everything you can find. Again welcome. Carrie Quote Link to comment Share on other sites More sharing options...
stand4hope Posted September 7, 2004 Share Posted September 7, 2004 Hi Sean and WELCOME! I am sorry that I missed your post until now. I was wondering if there was a reason why they have not used radiation on your dad's primary tumor. As far as the weight loss, my husband is down about 50 lbs since dx. Well, actually 15 before diagnosis and the rest after diagnosis. His appetite is back, but nearly as much as it was before. He eats good meals and snacks a little, but seems to get full a lot quicker so isn't really eating like he used to. He's really doing very well, but I think he's much too thin. I would like to see him put back on at least 20 lbs. Keep us posted about your dad and once again, welcome! God bless you, Peggy Quote Link to comment Share on other sites More sharing options...
David P Posted September 10, 2004 Share Posted September 10, 2004 Hey Sean. Glad you pushed for second opinions. Hope everything goes well for your father. Take care. David P. Quote Link to comment Share on other sites More sharing options...
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