chani

May I ask, has anyone had their chemo treatments put off when they had a cold, being given a high dose of anitbiotics for a couple days? then to return 2-3 days later to start a late chemo session? my dad's wbc is good but he has a small cold and he did not recieve his chemo today. I just spoke to my mother who told me he was on his way home so I have no details yet. I do know a wbc booster can be given if the wbc count is low and chemo can start as schedualed the same day as a booster is given....but I don't know if there might be something else that can be given when one has a cold so that the treatment can still go on.....this is a complicated issue I know. I'll find out the details as soon as I allow my dad to discuss this with my mother and eat his lunch. Thanks! Chani

Hi Tracy, I understand too, your fear. Ten months ago I found myself in a dark place and I knew nothing of what was going on. I just began with coffee and a keyboard each morning typing into www.google.com any words I could think of that had anything at all to do with the word cancer. Each website I found helped me understand a little more and a little more. Some sites I read had nothing useful but the vocabulary in them I knew meant something so I'd keep a notebook of medical terms. At the time my dad's cancer was in his head and neck. I also kept a notebook and I tabbed sections in it for treatments, for books on the subject, for websites, for foods to eat for loss of appitite, and one for products to use for my dad when he was recieving radiation treatments. I made up "comfort kits" for him and put them together when I got into town to see him. All of this was done with the help of people on message boards. People offer help and they help speed the learning process along. Before too long you will no longer feel like you are beginning a foreign language class. As this happens your feelings of being scared will not be so intense. And you will walk away with a world of knowledge, comfort, and many wonderful friends. Hang in there....and don't forget hot relaxing baths to sooth and balance your feelings. Chani

Goodmorning, I found this interesting website. Also, thanks to Rich for your post to a new poster (Tracy) that contained many websites. I see some on your list that I have already, but many I do not have. "Way cool" Rich! Thx. I'm just now reading this site below myself. http://www.healthtalk.com/otherconditio ... 403ctalk42 Chani

Cheri, One more thing, and this is fully agreeing with Deb. My dad has been given six months, one year with treatment. I do not, and will not, believe in a timeline. I was with my dad when one of his doctor's talked to him about this timeline and I saw a look that will forever haunt me in my fathers eyes. And this "timeline" has done nothing but cause sadness for all of my family. I have another sister, not the one with breast cancer, that because of this "timeline" now weights 90lbs because of the fear of losing her dad. Inside we all have inner strength, and inside this strength that has never been tapped. It's perserverance, and it's much more than that, something we don't even know exists until we reach in and pull it from where it lives inside of us. That, I believe in itself can beat "time lines" I wish that just one of my dad's doctor's would have said....here it is, it appears that you might have such and such, but if you have the will, who knows how long you have. Science is not perfect this is a fact, most all of us are aware of this so how can a time line be given. I do understand that my dad could very well not be here next year this time. I bought his birthday gift today thinking this might be his last birthday gift." and then I thought, well, I could be hit by a car on the way out of this store too. We have heard about times when a person has picked a car up by themselves off of someone who is trapped underneath. This is what I'm talking about....we don't know how it happens it just does, inner strength maybe, maybe the act of a higher being, whatever we believe that to be....From what I have read not all doctor's give time lines. I wish my dad had one of those doctors. I spend a lot of time on the phone with my family attempting to untie the knot my dad's doctors tied by giving a time line that they alone cannot say whether it is so or it is not so. Keep pushing for that miracle. I do. My dad often says he's ready to go, that he's lived his life and has done what he was put on this earth to do. And I respect this totally, but his eyes tell me a different story. Chani

Hi Cheri, I'm new to this site also. My dad has cancer too only his cancer started as skin cancer. SCC that moved to the head and neck and now to the lungs. He also has sarcoidosis where one third of one lung is a taken up by the mass of sarcoid. I search everything I can. Because my sister has breast cancer and lung problems exist in my family history I research for knowledge for myself and other family memebers should in the future we should ever need it, and I research the specific cancers that have plequed my family. I have searched clinical trials for my dad but his cancer combined with his other complications are hard to find...so I just search and learn whatever I can. Here are three sites. I have no idea of the specific details of your fathers cancer all I know is that you might be able to find what you are looking for in these sites. I believe I have more trial webites but these three popped up quickly in "my favorites" One of these, and I think it's the last one posted, I have not looked in yet at all. It was given to me by someone else through an email. I hope they help you in some way...but if not maybe something in one of them will give you a small lead into what you do need. Chani http://clinicaltrials.gov/ http://www.siteman.wustl.edu/physician/ ... list.shtml http://www.findarticles.com/cf_dls/m098 ... icle.jhtml

Hello all, (Neupogen a WBC booster shot) Earlier today I recieved an email from a women who belongs to another message board that I belong to. I had mentioned in one of my posts there about the WBC booster shot Neupogen that stimulates the blood system to make WBC's. My sister, who has breast cancer, recieved one the same day that her second chemo treatment began because without it her chemo would have had to be put off. My dad went in for his second chemo treatment, about three weeks ago, and he was told that his WBC was too low and that he was to come back in a week for his chemo treatment. So, he went home without his chemo treatment. When I heard that this happened I asked my mother to ask the oncologist why my dad did not recieve a Neupogen shot to raise his WBC, why a delay in his chemo treatment. The oncologist told my mother that he did not know that my dad did not recieve the booster shot and that it could be given the same day that chemo was to be given. Needless to say my dad was called in and given Neupogen, several boosters of it now and his chemo was started again. The name of the WBC booster is Neupogen and it can be given at the same time chemo is given, the same day!>>> I mention this because sometimes the doctor's are not in the chemo treatment room and if your doctor allows for you to have a WBC booster shot if your count is too low, and he/she is not there to make sure that it is given, your treatment could also be put off like what happened in my dad's case. There is also a RBC booster.... So do not confuse the two. There is one for both WBC's and RBC's. Here is a website about chemo that I have found to be very easy to understand and very helpful. In this site, and if you go into the bone marrow section there is an explaination for the RBC booster. Again, if you do not know that Neupogen exists, ask your doctor about it so that if the case should arise where your WBC's are too low and a chemo nurse tells you that you cannot have your chemo because of it, you will know that your doctor has allowed for you the Neupogen and chemo on the same day. I would have the oncologist mark it as okay (in your chart) to go ahead and start chemo with the booster. Ask your doctor about it... http://www.cancerhelp.org.uk/help/default.asp?page=310 Chani

Hello, Mo, I'm happy to be here. I'm here to learn anything. Cancer is such a wide, wide topic with so many kinds and so many facets. I know that my dad's cancer is that of a skin, squamous cell carcinoma, that began on the top portion of his ear, which then matastasized to his head and neck and that now has moved into his lungs. Metastatic scc to the lungs. I want to make sure that others know this, and I also want others to know that I'm aware of this. Because his cancer is in his lungs, I now have an entire new area of the body that I must research and study. It's cancer in the lung/s, and in order to become familiar with the behavior cancer takes when it is in the lungs, I have come here to learn from those that are experiencing this, or that know extensively about it. I want to learn everything from what kinds of medications help when things get ruff, all the way to innovative treatments. Through my own obsessive research over the last ten months, and from the help of others on the head and neck message boards, I have learned about lung cancer even though this is not exactly what they have/had or what my dad has. And from the head and neck boards I learned of the live VATS, video assisted thoracic surgery. And much to my surprise two of my questions were answered. One of which was "could someone have this surgery done with a lung that contained sarcoidosis and tumors." Unfortunetly, my dad's tumors are too large for this surgery. I guess what I'm saying here, Mo, and to anyone that reads this post, is that I will be careful of what information I give out so that it does not give false hope or confuse anyone because the cancers are different. This was brought to my attention and I'm so glad that it was because sometimes I get too excited over new information and I blurt out what I have learned. Because my dad may not have a lot of time to waste, this could easily happen. As a supporter of two family members with cancer I tend to reserch everything just in case within something I read is an answer. I've had to limit my time and balanced my life so that I don't spend 24 hours a day researching...so, I've got to sign off now. But I will be back...excited about what I can learn from all of you. Have a wonderful day, Mo....and thank you! Chani

Lisa, Go into "Late Stage NSCLC and about five posts down you will see where Dean explained to me how to post a picture. My husband helped me so I did not get hands on experience.... Chani

Hi Connie, I see where a huge problem in understanding my posts could exist. In both introduction posts. Before I learned a little about this website I posted here where I'am now, posting a short introduction. Earlier today I posted in the main "introduce yourself" section antother introduction. Your right...I have made a bad mistake in my description of what kind of cancer my dad has. It is squamous cell carcinoma (SKIN CANCER) that has moved to the lungs. Skin cancer that moved to the head and neck and then to the lungs... I do understand what area I'm in and that it is not exactly specific to my fathers situation. I'm sure sorry about this misunderstanding and I hope I have not led anyone into a stray or confused anyone. Thanks for pointing out this error to me!! I'll cut and past this into the other topic site titled Explaination... Chani

Hi Mom, I'll try to find out why you cannot see yourself logged in. xoxo

Hello, Close to the edge...but insightful and with that, your are enabling your inner light, your strenth, to guide you away from the edge.... Chani

Hey Dean...it worked...thanks so much. When I shower and get cleaned up later this week I will post another picture of myself...thanks for your help!!!

Hello, I love the pictures of everyone that appear next to your posts. Dean helped me, along with my wonderful husband get my picture up next to my posts too. When I get cleaned up, I will have my husband take another picture of me, but for now... Chani

I love your pictures on the side of your posts...how did you do this?

Hello everyone, I posted an introduction to the late stage NSCLC area. Then my second look at the site, in order to learn it, I noticed that what I should have done was post and intoduction here... Yesterday I wrote out a well thought out post. I then went to edit it and I lost it all... I called my pops to talk with him while as I cooled my disappointment from losing my post, and while talking to him he asked me how he could get into a message board. "Hooray"!! " I said, and quickly attempted so set him up. Well, I misspelled his screen name which caused him to not be able to log in at his every effort. I misspelled Injunjoe...hummm. Because he wants to read and post, I will go briefly at my story so that he can tell his story. If he does not post than I will come back and introduce again his story. I have three sisters and I'm the youngest of the four. My parents and two sisters all live in different states. Myself and one sister live in the same state but not in the same city. My dad's primary was on the top of his left ear. Squamous cell skin carcinoma. His dermatologist froze it three times and removed it twice. In March of last year...03 A diagnosis of head and neck cancer. He had a beard and did not notice the lump in his neck. April, 24-03 a Mohs surgery was done removing the top part of his ear. April, 25th-03 radical neck surgery was performed. June, 4th-03 radiation treatments began ending in mid July-03. November-03 CT scan performed of on neck and chest showing bilateral pulmonary nodular masses. Not present on prior exam from April, 4th-03. The November CT scan results came back on November, 19th-03. My sister, discovered a lump in her breast November 20,-03. Diagnosed November, 21-03 with Breast cancer. Mesectomy performed November, 22nd-03 One lumph node affected and one satilite lesion. Extensive blood loss during surgery. Both my dad and sister began chemotherapy treatments in December-03. All of us use to say to each other that we were so luck, that nothing really bad has happened to any of us. There are nine grandchildren and "almost" four great grandchildren, the four of us..sisters, and my parents. We have been hit hard and the cancer is trying it's best to destroy all of us. It's affecting all of us, and doing it's best to tatter our relationships with each other. We are all going through the stages of admittance, and all at different times, our reality of what has happened to us. Cancer, when it shows is ugly, evil head does not stop at immediate family, it sits back and lauphs as it watches what it does to relationship after relationship with marital lovers and significant others and with everyones friends. When my sister was diagnosed I remember I was at home alone and I hung up the phone and I yelled to myself "what! is going on." and then followed by "cancer is not going to wipe out my family" I then jumped on the phone and got two plane tickets, one for me and one for another sister and we flew up to be with our sister for her surgery. We had a blast together before the surgery day...lauphing and joking with each other. My two nephews, sons of the sister with cancer and their girlfriends and a great niece/grandbaby. We all piled into my sister's little house and we kicked up some dust...we did everything cancer does not like. We all supported each other with lauphter and hugs and kisses. Sure, the tears were there, many many tears while we sat contemplating how to tell our mom and dad/grandparents....talking with each other and our oldest sister,who could not get a flight to be there, continually on the phone. A dilemma it was, it was soon Thanksgiving and I was suppose to be at my folks for the big day. I had more plane tickets floating around than I could juggle, and mom and pops thinking I was to be picked up the day before and I had another ticket to be in on Thanksgiving day. My sister's doctor/friend ended up telling my parents. So, my mother flew up the day of the surgery and after it I flew to be with my dad. The cancer sitting back with it's heal kicked up thinking that a defeat was near...well, it wasn't and we are still ahead of the game. If your game is not over, all of us, everywhere, everybody who finds themselves battling the "destructive evil" we can do it together and not let it take from us our good relationships with each other, our lauphter and especially our spirits. the bright light that is within all of us. We will all get tired and mad, we will all shed many tears, but working together using message boards and sharing information we can help each other win the game. I'm excited to be here and to share what I have learned. I'm also ready to learn whatever I can from all of you. The whistle has just sounded for another quarter of my family's game. And the ball is in our court! Thank you!! xoxo Chani

Dear Gay, I read your post last night before I went to bed. I got up this morning saying to myself "what a heart felt letter." Your post is wonderful. I'm new here too, I think it was four days ago that I found this site. I have, before I found this site, been posting to a head and neck cancer board. Last March-03 I found myself with cancer in my life too. My father, who's squamous cell carcinoma on his ear had moved to his head and neck. I dove at the computer in the beginning frantically trying to find out exactly what it was that my father had. After searching for message boards I found a head and neck board that I have called home for the last ten months. These people helped more than I have words to express. I have been in contact over the phone and met one supporter like me in person. I will tell you, that without the help of these people I would still be searching for answers to some of my questions deep within google somewhere. When using a message board you also help others too. Just as I feel you have done here. When you mentioned the analogy of a roller coaster, you are so right...My analogy of my experiences are that of an winter olimpic speed skater. We have to pump hard around the corners and then glide on the straights....but sometimes it feels like we are pumping hard all the time, not just when things get really tuff, but all the time. And, just as the speed skaters do, we fall on the ice and it's a cold place when we do. But, unlike speed skaters, who do not stop to help a skater that has fallen, message boards stop all the time and help us up off the cold ice. Not just other supporters, but people who are in remission, and those still fighting. Someone told me once that their is only one game in town. And, from that insight, we must stay ahead of the game. But also, my wonderful friend John, who's one year out...meaning one year cancer free, told me that it is a balance. I must do my best to balance my life so that I do not let the cancer control me just as it tries to do to those that have it. I made the mistake of letting it be my only vocabulary, and I missed out on conversations with my family, my dad, that could have been full of happiness and lauphter, something cancer does not want us to have. Not long after my dad's cancer spead to his lungs, my sister was diagnosed with breast cancer. Cancer is trying to play a nasty game with my family, but I have news for it, we won't give up, and no matter what the doctor's say, there is one game in town and we will play the hardest we can until the game is over and a winner has crossed the finish line. It is a battle, but we can play hard ball too. I also wanted to mention to you that I have a little niece with bipolar also. I have researched this too, although not as intensively as cancer. There is a site called Bipolar World that if you wanted to, if you don't already know of it, go into their message boards when you need a little time out for yourself. Thank you for your post... Chani

Hello.... I'm a little clearer now than earlier....I had written a nice, well thought out post, and then I hit preview. I stared to correct a (wouldn't you know it) a misspelled word and I lost the whole thing... so, I called my dad first before starting a new post.....after I told him what I had done he asked about how to get into this site....oh, what a big day this was for me. I've been researching his cancer since March of last year and this will be his first attempt into a message board. I know he will love it after he gets use to using and posting. Anyway, I think I was so excited that I just didn't listen close to him when he told me his screen name. This does not mean I will never misspell words again though...lol Since he is going to post here I may let him tell his story, but I think I will post to the big "introduce yourself" forum for myself because I only posted in the late stage NSCLC forum for myself. For the last ten months I have posted to a head and neck cancer message board. This is the place I need to be now... I wish I would have thought to come here in November -03 but I was so busy searching websites that I did not stop for a moment to look for LC message boards...nevertheless I'm here.... I like the pictures that you and the others put up...this is a great idea. No one on the head and neck board did this....I 'm sure they would have if it were possible. Will talk with you soon....thanks for the nice post! Chani

Posted: Fri Jan 23, 2004 7:06 pm Post subject: connie -------------------------------------------------------------------------------- I FOUND THE ISSUE.... I think I just found the problem....from my own hands...lol I typed in my dads username as ingunjoe722. He told me that I spelled it wrong. It was suppose to have been injunjoe722. My own computer that rests on top of my shoulders is having a malfunction today....lol Thanks to everyone who tried to help me figure out my own mistake... Chani

Hi, Connie.... I think I just found the problem....from my own hands...lol I typed in my dads username as ingunjoe722. He told me that I spelled it wrong. It was suppose to have been injunjoe722. My own computer that rests on top of my shoulders is having a malfunction today....lol Thanks so much, and yes, I sent Rick an email...I'll let him know what happened. Chani

Hello again, I have tried to help my dad log in by using my own computer. I registered him using his email address but my computer. Will he not be able to log on from his computer? Thank you, Chani

Hello, I'm hoping that my post will go through and that I'm registered properly. I'm a supporter of two family memebers with cancer. My dad has scc of the lungs. His primary was on his ear, it moved to the head and neck and is now in his lungs. He's had radiation of the head and neck before it was found to be in his lungs. He is now recieving chemo. My sister has breast cancer and is also recieving chemo. Chani1