MsC1210 Posted May 10, 2006 Share Posted May 10, 2006 I am in Western Massachusetts for anyone who needs a shoulder or an ear. Quote Link to comment Share on other sites More sharing options...
angelofcharlie20 Posted June 8, 2006 Share Posted June 8, 2006 Hi, I'm from the South Shore. Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted June 8, 2006 Author Share Posted June 8, 2006 Hello Angelof Charlie, Would you like to tell us about yourself? Chris Quote Link to comment Share on other sites More sharing options...
angelofcharlie20 Posted June 8, 2006 Share Posted June 8, 2006 My father was diag with stage 4 lung cancer March 2005. It had met to the liver. 2 rounds of chemo worked, then 2 rounds didn't Tarceva since July 2005. It all of a sudden stopped working. Now he has a met in the brain. Doctors are really sure what the next treatment protocol will be. Would love to talk to someone about this. Thanks, Shirley Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted June 8, 2006 Author Share Posted June 8, 2006 Hello Shirley, My name is Chris and although I am not really too familiar with the treatments aspects I am always willing to listen! I am really sorry that you had to find this site but at the same time, this is one of the best places to get information, support and just talk to people who understand what you are going through. Have you posted on the newcomers thread? I guarantee that you will be able to find answers to ANY questions you may have. My best advice to you is to stay positive, learn as much as you can about ALL forms of treatment and ASK as many questions as you need to. Both here and of the doctors. You and your family are in my prayers and remember, I am here for you. I may not have all the answers but I will always do what I can and I will always listen! Hugs Chris Quote Link to comment Share on other sites More sharing options...
angelofcharlie20 Posted June 8, 2006 Share Posted June 8, 2006 Chris, Thank you so much for reaching out to me.... I never thought I would get a response as swiftly as I did. I think I posted a new to the forum post. The subject was "newbie" It has a more detailed account of my father's illness. Today is my first day on this site and I'm still trying to figure everything out. Regards, Shirley Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted June 8, 2006 Author Share Posted June 8, 2006 Hello Shirley, You are very welcome! I only wish I could do MORE but I am here for you in whatever way I can be. I found and read your post in the other forum. You can see what I was talking about as far as how wonderful everyone on this site are! If you have questions, post them and you WILL get some guidance as to where to get the answers if someone here does not have them. One thing I would like to add to the advice you have, get a notebook or an organizer of sorts and write EVERYTHING down. If you go with your parents to the dr appts, jot down any questions you have and all the results and info you are given at the appts. (A good idea for your mom if she goes to the appts too) I also agree with the 2nd and 3rd and how ever many other opinions advice. If you and your family are not happy with the treatment and want to explore more options, that is your RIGHT to do so. Not all drs are thrilled about alternative therapies, but if that is something you wish to look into, there is a forum on here dedicated to that topic alone. Brad was in Canada and your comment about the initial dr returning to Canada made me wonder. Is/was that the dr who was telling you Tarceva was not working etc? I was a little surprised at the reluctance Brad ran into when he would ask about different therapies, etc and that made me wonder about the dr you mentioned. Ok, I am sorry, this got lengthy! Keep me posted and talk to you soon Hugs Chris Quote Link to comment Share on other sites More sharing options...
TracyD Posted June 8, 2006 Share Posted June 8, 2006 Hello to you both. I'm from central MA, Whitinsville, to be exact. Where on the South Shore are you Shirley? I have good friends in Scituate. It's a shame we're all here, but at least we have each other. I really don't know what I would have done without this site. My friends and family are very supportive, but they don't have the knowledge of this disease, although we're all learning quickly! Shirley, I would very much love to hear about your juicing. I'm willing to try anything, as long as it doesn't interfere with my treatment. I'm so sorry that Tarceva stopped working for you dad, but it sounds like it kept him well for a while. I wish I could help you with treatments, but Tarceva is my first treatment, I'll find out tomorrow if it has worked for me. Anyhow, I just wanted to say hi. Do either of you know of any LC support groups in MA? Tracy. Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted June 8, 2006 Author Share Posted June 8, 2006 Hello Tracy and welcome~ I am not sure about the support groups off the top of my head but I will look into my notes etc and if I have a link I will get it to you ASAP I am glad you found us here. I will be in touch soon~ Chris Quote Link to comment Share on other sites More sharing options...
angelofcharlie20 Posted June 8, 2006 Share Posted June 8, 2006 Hi Chris, You are right, the response has been incredible. Before joining this forum I felt pretty alone searching the internet until the wee hours of the night. It's grim, but it's also comforting to know that others are going through similar situations. It's so hard to talk to someone who has not been personally affected. It's like they don't know what to say - and that I understand too but it's still not too comforting. I do keep a little notebook where I jot down anything that looks interesting whether it be new treatment combos or alternatives that others have been successful on. It's been very helpful considering the wealth of information out there! Now I find myself needing to take a break from searching for new information and to research further what I already have. As for the original onc that left for Canada - he left before the Tarceva stopped working. He had said that it's his native country anyway. Ciao, Shirley Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted June 8, 2006 Author Share Posted June 8, 2006 Hi Shirley, You are so right, the wealth of information out there is really overwhelming at times. I did so much reading and researching in the beginning that I would reach the point of complete overload! I have hundreds of files saved that I have looked at or into, if you are ever looking for anything specific, just let me know and if I have it I will be more than happy to share it. Canada seems to deal with the cancer issues a little differently, or so it seems to me. There are a lot of very good options available there, but it seems as though the oncologists are reluctant to "go out on a limb" in some cases. Not to say that they are all that way, but the ones I am familiar with seemed to be. Hugs, Chris Quote Link to comment Share on other sites More sharing options...
angelofcharlie20 Posted June 8, 2006 Share Posted June 8, 2006 Chris, Any experience/knowledge to when Tarceva stops working? The Drs. seem puzzled with this although they all agree that it's not a good thing. Which I could've told anyone without a med degree.... They seem to help with what happens now? It's definitely not "it." I'm sure there are more options out there. I'm just trying to get some and hopefully convince the Drs. to try it or try to find someone that will. Again, they're so "textbook." Best, Shirley Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted June 8, 2006 Author Share Posted June 8, 2006 Shirley, You might find a lot of information by posting this question in the NEW TREATMENT, MEDICATIONS & CLINICAL TRIALS forum. I have seen a lot of posts dealing with Tarceva in general and I am certain that someone can answer that. One of the things I was researching toward the end was the alternative therapies since the conventional or text book treatments were doing NOTHING for Brad was iscador. One of the cancer institutes in British Columbia was doing a study on it and it sounded very positive. But again, what works for one does not always work for another. Chris Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted June 8, 2006 Share Posted June 8, 2006 Hi Shirley, Sorry to hear about your father but glad you found us. I'm from Mass also, just north of Boston. I have a great doctor and If you need a second opinion or if you or your dad need someone to talk to please PM anytime. Also there is a great place that offers support for both the lung cancer patient and there family called The Wellness Community (In Newton) and it is free. Below is the link. Hope this helps. Prayers fro the best. Rich http://www.thewellnesscommunity.org/pro ... /guide.asp (The Wellness Community / National Cancer Support, Education And Support / Free) Quote Link to comment Share on other sites More sharing options...
angelofcharlie20 Posted June 9, 2006 Share Posted June 9, 2006 Hi Tracy, I grew up in Quincy and my parents still live there. I visit there once a week. I actually live in Franklin, so I think I'm pretty close to you. Shirley Quote Link to comment Share on other sites More sharing options...
angelofcharlie20 Posted June 9, 2006 Share Posted June 9, 2006 Tracy, I wanted to respond to you to let you know where I am as quickly as I could that I didn't read the last part of your post til later. Funny, I read and responded earlier in the day at work. I guess I just rushed through it at work when I had a few moments and missed your response. As for juicing, my father juices carrots, red delicious apples, celery and sometimes tomatoes. I try to do organic as much as possible. The most consistent organics I juice are carrots and apples. You can get both at Stop and Shop. It's $3.99 for a 5 pound bag of carrots and a 3 pound bag of apples. The organic celery Whole Foods has, but I've found it to be inconsistent with their stock. When I juice for my father, I try to do one juicing with only carrots. It's about 1 lb of carrots for every serving of juice. I don't know how much that comes down to in ounces though. I've stressed carrots since I heard that beta carotene is a wonderful vitamin/mineral (whatever you call it) to ingest especially if you're fighting a disease like cancer. I believe I read somewhere that it has great antioxidant properties that people aren't fully aware of since there was so much hype about the benefits of blueberries a few years ago. I juice the celery because I read online that it's a good detoxifier. My father juices approx once on the weekdays and twice on the weekends and Tuesdays. I like for him to drink it twice when I'm home on Tuesdays. (I work a funky work schedule) Tracy, you don't need a fancy juicer. We bought one at Filenes for $19.99 on sale. When it's not on sale it's about $30. Not a bad deal considering all the use we get out of it. Sorry if this is all choppy. Let me know if you need anything else and I'll post again if I think of anything. P.S. Good luck tomorrow. I hope Tarceva works for you. Also, a veggie brush would be useful to have to clean your veggies/fruits prior to juicing. Big Hugs, Shirley Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted June 10, 2006 Author Share Posted June 10, 2006 Hi Shirlie I just wanted to thank you for posting the juicing ideas. I have a friend that I think and hope this info will benefit. Hope all is going well there.. Hugs, Chris Quote Link to comment Share on other sites More sharing options...
angelofcharlie20 Posted June 13, 2006 Share Posted June 13, 2006 Hi fellow Massachusett-ians, Just a quick update. I had called my father's doctor last week to ask to see if they would give my father some additional treatment before he sees the neuro onc. My answer to everything was "no." I had asked for an increase in Tarceva or the Celebrex/Tarceva combo. "No, no, and no." Well, this morning and woke up and thought that if they do not double the dose of Tarceva to 300 mg, then maybe they would at least give me an increase to 200 mg. For those of you who struggles in math like I did, my father's original dose was 150 mg. All I got from the fellow was that she would need to ask the doctor. The fellow got back to me and said that the doctor said it will be ok to increase it to 300 mg. Small victory. I just hope it benefits some even though it appears that he is already resistant to 150 mg. of Tarceva. Just hope the increase will kick it in gear again. This morning (as productive as I was), I contacted Beth Israel who is the only facility in Mass. that has cyberknife and asked for a consult. I left a message and the consultation lady got back to me a few hours later. She said that all I needed to do was fax over all the medical records pertaining to his case with copies of the CT scans burned onto CDs. All the infor will then be given to a radiation oncologist to review and if he/she feels that my father could benefit from it, we'll receive a call for a consult. Considering I'm not too faithful that New Englad Medical will fax everything I need in a timely manner (I'm a little impatient) and I still need to have my father sign the consent form, I decided to go with my father into Boston to get all of his records and then drop everything off at Beth Israel. This is just to speed the whole process up. Hope he can have cyberknife. Shirley Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted June 13, 2006 Share Posted June 13, 2006 Prayers all goes well for you dad and you Shirley. Rich Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted June 13, 2006 Author Share Posted June 13, 2006 Hi Shirley, I am happy to hear you are making some progress with everything. Sounds like steps in the right direction to be sure~ Continued prayers and positive thoughts to you and your family, and keep up posted!! Hugs~ Chris Quote Link to comment Share on other sites More sharing options...
angelofcharlie20 Posted June 13, 2006 Share Posted June 13, 2006 Getting ready to do some grocery shopping before I head home to go to New England Medical. Hope everything will get done in a timely manner and there's not a lot of wait time. Chris - Has your friend given juicing a try yet? Shirley Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted June 13, 2006 Author Share Posted June 13, 2006 Shirley, I am not sure if Darrell has gotten the juicer yet, but I will ask him when I hear from him later. I, on the other hand, am addicted!! lol.. watermelon/banana/strawberry is so good! Good luck today and keep on those dr's! Let us know what happens, and know we gotcha covered in the prayer dept!!! Hugs and love, Chris Quote Link to comment Share on other sites More sharing options...
EastCoastLadi Posted June 13, 2006 Share Posted June 13, 2006 Shirley, Hi, I'm finally responding to all my fellow Mass friends!.... So you're dad is at NEMC, I know NEMC very well, but I thought they have Cyberknife there too, in fact I'm pretty sure because the Dr. that is the head of it, was a Radiologist at where my husband goes for treatment. Also if you're going to BI for treatment, there is a very good thorastic onc. that my husbands' onc. consults w/. we've been to him 2x's and he has told us don't hesistate to come back to see him, and also my husband onc. and him were former colleagues some yrs back, so they have done alot of consulting back and forth about my husbands' treatment. Hang in there Shirley. Grace Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted June 13, 2006 Author Share Posted June 13, 2006 Hi Grace and welcome to our little world over here. Chris Quote Link to comment Share on other sites More sharing options...
EastCoastLadi Posted June 13, 2006 Share Posted June 13, 2006 first thanks Chris! Secondly, Shirley, I was wrong about NEMC and cyberknife, NEMC does gammaknife, sorry about that, I'm still learning myself, but I think the biggest difference is the gamma is more for the brain, whereas cyber can go elsewhere.... Keep us posted Shirley, Grace Quote Link to comment Share on other sites More sharing options...
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