northstar Posted February 16, 2006 Share Posted February 16, 2006 I've come back to edit this 1st post. Big changes since I wrote this My mom saw the onc yesterday and asked him why he never told her she had Mesothelima. As you can see from my post below, last week or so the nurse finally told my mom what kind of cancer shes fighting Well....the onc was VERY confused and said "You dont have Meso! Where did you get THAT idea?" So now we are confused but my mom believes the dr much more than the nurse. She thinks it must have been a simple mixup. I'm exhausted. I've been looking into Meso now since we learned about it from the nurse. I've been researching specialist, chemos etc. My mom and I have been talking about where she could have been in contact with asbestos etc. I was worried sick about my whole family and our chances of contracting cancer from exposure All for a mix up because of a nurse?!? I dont know what to make of this *sigh* (original post) I'd been asking her what 'type' of lung cancer she has since she was diagnosed in July. She didnt know, she doesnt think the dr ever said She called me today after her treatment and told me the nurse commented on her having Mesothelioma. That is infact what my mom has It was a suspicion of mine since the beginning since she worked with cermanics in the house. I never told her the connection, I didnt want her to worry Does anyone know of anyone here who has this? Is it true that it cannot be treated? I feel like my whole family is going to die now. I grew up with the dust in my house as did my sister and my dad Quote Link to comment Share on other sites More sharing options...
Donna G Posted February 16, 2006 Share Posted February 16, 2006 We have one person I know of that has had Mesothelioma. She lives here in Minnesota and I have known her personally. She is now 32 and a 6 year survivor. I got an email from her this winter so I know she is OK. She does not go to group any more and I am not sure she is here on the board often either. I think she is getting on with her life. She had major surgery to get rid of the Mesothelioma. She was so young and it takes years and years to develop , she must have been a toddler when she was exposed to Asbestos. You might be able to email her. She really knows a lot about it. Best wishes, Donna G jodi page Joined: 29 Jan 2003 Posts: 12 Location: minneapolis, minnesota Posted: Fri Feb 14, 2003 12:17 am Post subject: Mesothelioma survivor hello, my name is Jodi Page, i am 29 years old. i was diagnoised with Mesothelioma in December of 1999, at the age of 26. i had surgery, a left thoracotomy; radical extrapleural pneumonectomy. i recently found out i have asthma, and am having trouble finding the right meds for that. i would like to talk to and get to know more people dealing with Mesothelioma. why do they always give such long names to cancer? Back to top Quote Link to comment Share on other sites More sharing options...
Ry Posted February 16, 2006 Share Posted February 16, 2006 As Donna said Mesothelioma is from asbestos exposure-- ceramics should not have been the cause as its not an ingredient in clay or glazes. Quote Link to comment Share on other sites More sharing options...
antoinettev3 Posted February 16, 2006 Share Posted February 16, 2006 I am a mesothelioma patient and have been for over 10 years. Most of the information you'll find online about the disease is very scary and disheartening. Unfortunately most of the web sites are put out by law firms and they tend to promote fear and urgency in order to get more clients. While there is no standard treatment protocol there are treatments. It depends on the stage of the disease and cell type. I have only had radiation for pain management and that was just last year. Prior to that I had no treatment. My profile details everything. Please don't worry about your whole family dying from meso. It's still a very rare cancer with only 2,000-3,000 cases reported each year. There are people who worked with asbestos for decades who never develop the disease and there are some who do. Here's a great organization for meso info: http://marf.org Please know that you and your family will be in my prayers. Sincerely, Antoinette Quote Link to comment Share on other sites More sharing options...
Treebywater Posted February 17, 2006 Share Posted February 17, 2006 ((((northstar)))) I know it is hard... but try not to jump too far ahead of yourself with this. You are HERE NOW and so is your Mom! Hopefully the doctors are going to find just the ticket to keep her around for a long, long time. It's hard not to "what if" about our own situation--even with the 'garden variety' LCs... but deal with now, now. Quote Link to comment Share on other sites More sharing options...
northstar Posted February 17, 2006 Author Share Posted February 17, 2006 You are right Treebywater, and it was selfish of me to voice my fears like I did. It is scary though, the thought of dealing with this all over again with other loved ones or myself. I am getting ahead of things like you said, and will try to stop Ry, weird as it sounds the slip and clay dust at one time contained asbestos. My mom spoke with me about it this evening. Appearently she looked into it herself as well Donna, thank you for the information and the reply Antoinette, you are an inspiration. Thank you for speaking up. You were right, I did find many disheartening sites on line, mostly from lawyers. I will try to keep my chin up Quote Link to comment Share on other sites More sharing options...
kamataca Posted February 17, 2006 Share Posted February 17, 2006 Oh, honey...never apologize for voicing your fears here! That's what we are here for. If you read my initial posts, they are full of fear. The people here who seem like they wear rose colored glasses, telling you not to worry etc., speak from a level of experience. We ALL know your fears...and I am so sorry you are dealing with this now. Come here with any fears or frustrations, or with good news and success. We are here for it all! Kelly Quote Link to comment Share on other sites More sharing options...
icbn Posted February 17, 2006 Share Posted February 17, 2006 Ry, weird as it sounds the slip and clay dust at one time contained asbestos. My mom spoke with me about it this evening. Maybe. But kilns could easily have been lined with it. Quote Link to comment Share on other sites More sharing options...
Dazy Posted February 18, 2006 Share Posted February 18, 2006 I agree with Kelly...it is not selfish to whine or voice your fears here. Fear, unfortunately, is a very real part of the whole LC experience. To pretend it doesn't exist is like trying ignore an elephant in the room... Hugs & HOPE!!! Stacey Quote Link to comment Share on other sites More sharing options...
jodi page Posted February 22, 2006 Share Posted February 22, 2006 Hello, I am the person Donna G. talked about. Today is my 6th year mark after surgery. I had the same fear as you did. What about my family and will they get this as well? I wish there was some test they could take to let us know, but there isn't. I'm just grateful that it was found early for me and that I was able to get treatment. There is a good web site that is dedicated to finding a cure for Meso and my story is posted on the site. It is www.marf.com They will be able to tell you more than I can and give you some hope. You and your family are in my thoughts and prayers!! If you would like to contact me, please feel free to do so. Jodi Quote Link to comment Share on other sites More sharing options...
northstar Posted February 24, 2006 Author Share Posted February 24, 2006 I had family staying with me this week and couldnt get to the computer. Thank you for the replies and support Icbn, you bring up a good point about the bricks and lining of the kiln! Thank you Jodi, I so appreciate your reply. Your story brings hope for me and my family. If I can ask...what stage were you when they found the cancer? We are a bit concerned now that the onc might not have much experience with this form of cancer. He doesnt like the idea of surgery at all..says its too tramatic to bother with. He may be right I've talked to my mom some about this openly. She cant figure out where the asbestos came from! We talked about her past and cant come up with much of anything except the ceramics maybe. She worked in an office for 2 years or so, but no work was being done on the building. They lived in some older homes, but again never remodeled. We are at a loss. In some ways though, she feels a bit better knowing it wasnt from smoking. She realizes the bit of smoking she did likely contributed to developing the cancer, but that it was not the cause. So she isnt 'beating herself up' as much as before She is handling the Alimpta (sp?) pretty well. All she has is a few days of fatigue from it so far. She is on her 2nd treatment of it As always.....the best to everyone Quote Link to comment Share on other sites More sharing options...
northstar Posted February 28, 2006 Author Share Posted February 28, 2006 opps...........I tried to post an update but did it kinda backwards I edited my 1st post up top Turns out the nurse made a mistake Quote Link to comment Share on other sites More sharing options...
Ry Posted February 28, 2006 Share Posted February 28, 2006 What a mess! So what diagnosis did the onc tell her? Quote Link to comment Share on other sites More sharing options...
kamataca Posted February 28, 2006 Share Posted February 28, 2006 A mess, indeed! Isn't it funny what passes as "good" news after awhile? Keep us posted on your mom. Glad for your good news! Kelly Quote Link to comment Share on other sites More sharing options...
northstar Posted March 1, 2006 Author Share Posted March 1, 2006 Yeah...I really dont know what is what anymore! Or who to trust. I guess the dr knows best, but from the description of her cancer it sure sounded like Meso.. Its at the very bottom of her left lobe, which i believe is indicative and its not a solid tumor like as in one big lump. Because of this, I was suspicious of Meso from the beginning. The dr said it Adenocarcinoma, large cell. Thats all I know Quote Link to comment Share on other sites More sharing options...
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