northstar

My mother told me a week or so ago that Williams helped pay for the Reeves' medical bills. Apparently, Chris' care drained most of their money. I was touched by this. I didnt know at the time that he would also be helping out their child Good man

Hmmm............. Now I'm getting concerned. I hope more people stop in to shed some light on Darci's question I dont want to hijack your thread Darci, but the timing of tests is something that has concerned me as well. I cant ever seem to get a set answer to this! I know everyones treatment is different...but shouldnt there be SOME kind of standard. Just so patients know whether or not they are getting the best treatment available? I spoke with my mom this morning. I was wrong. She gets an X-ray tomorrow, not a catscan. Her next scan wont be for a while longer. I'm thinking she said 'months' as in plural!! Like not til May or something Her last one was in late Dec. If this current treatment isnt working, isnt that giving the cancer much too long a time to grow unchecked? Anyone know if there is a standard in timing for scans?

I always worry about this as well. I want them to keep tabs on my moms tumor, especially since it started to grow again after her chemo ended. My mom had a scan on the last day of Dec that showed growth. She was then sent for a USELESS 2nd opinion which delayed her treatment a few weeks She started a new chemo back in the end of Jan I guess. Her 3rd treatment will be this Thursday. She is scheduled for a scan very soon...I think next week So....that will be about 2 1/2 months (9 weeks or so) between scans Too long for my liking

Oh My Gosh!!!!!!!! Awesome......just awesome!!!!!

Fluids are so important!! We had a hard time with my mom and her fluid intake when she was on Taxol/Carbo. She got SO weak after her 1st session that she couldnt sit up, couldnt eat etc. It was all because she was so dehydrated. Finally she was taken in and given fluids by IV. A HUGE improvement. Since she was never a big drinker of water, she had to continue to get the IVs after each treatment Not only do the fluids help you feel better, but they help the effectiveness of the chemo I hear. It helps the chemo pass thru the body, getting to where it needs to go, and gets it out of the system after its done its work. Anyone else ever been told this? I wish your FIL all the best

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

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

I've been wondering how Lucie was handling the treatment. I'm glad for the update! It sounds as though she is doing pretty well with it, except for the fatigue and stomach problems. The fatigue cant be helped though it seems, thats par for the course I guess. I hope the stomach problems stay under control. How is her eating though? Is it effecting that at all? My mom just got her 2nd treatment last Thursday. Her and Lucie are on a similiar schedule. My mom is holding up well. She got tired about 5 days after the treatment, but a different kind of tired than when she was on the Taxol. Now she gets 'sleepy' kinda. She is eating well and hasnt had much of an issue with stomach sickness. She had a little stomach upset which was stopped with the compazine thankfully I have my fingers crossed that this chemo does the trick and is kind along the way!!!

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

You are an inspiration! And thank you for your reply Jodi to my thread earlier Best of luck and good fortune to you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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

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

Thanks for the replies. Don, I hope Lucie is tolerating the chemo well. So far (1 treatment) my mom is holding up well. 3 days after the chemo she was tired and her stomach was a little 'off' but nothing too uncomfortable or severe. I'm so glad to hear the alimta stablized your mom mbg! Connie, I'll ask if I can but I dont know if I can get over to my moms onc appointment this next time round. Her time with the dr is so few and far between, and then when the appointment comes its like you have to rush to ask your questions before he moves on to the next patient I know they will take another cat scan, but my worry is how they will read it. What if her tumor grew by 30% since her last scan in Dec.. Even if the Alimta works and shrinks it by 25%.....that will STILL look like growth and they may think the chemo is not working. How can they make decisions on outdated information? Oh well.....sometimes I just have to get used to the fact that this is out of my hands

Hello everyone. I've stayed away for a while since I'm feeling a little more depressed about my mom. As you may have read, her tumor and lymph nodes started growing again after she finished her Taxol/Carbo treatments She wasted a bunch of time getting on her new chemo because of a second opinion (which was a waste of time that I wont go into) Anyway. She started Alimpta (sp?) 2 weeks ago. My concern is that her last scan was Dec 29th or so. It showed growth. We dont know when her next scan is, there is none scheduled right now. My thinking is there must have been more growth between the Dec scan and her start of treatment. SO.....how will they compare/gauge this chemos effects?? Even if the drugs works and it starts to shrink things....if they dont know how big it was at the start, how will they know if it shrunk?!? And if they dont find a change on the next scan and wait to see if any change occurs, thats another 5 weeks or so!! A long time if the drugs really not working! I know I'm not making any sense. Just wondering if anyone has any advice here. Can we 'demand' a scan? Should we just trust they know what they are doing?

Nevermind I guess I just got back from the onc and he didnt want to have any part of it. He seemed irritated by my asking actually. Even though I tried to explain that all we would need would be the sample and that everything else would be taken care of, he wouldnt participate in it. He said it was experimental and expensive and he wouldnt take the results into consideration I tried to inform him that there are actually clinical trials now being conducted and that medicare and health insurance covers part of the cost, but he shut me up essentially Thanks for the replies though

Mary, thank you for replying! I'm glad to hear that there is a studying involving sensitivity testing. I hope you get great benefit out of it! Ry, I did a search before posting but only came up with a few results. I should play around with the words some to see if I can find anymore threads. I did see that someone here did try it and was having some sucess Since this might be a new idea to my moms onc. I wanted to get as much info as possible. I am all for the idea, she is very interested in it, I just dont want to dr to discourage her though if he doesnt know much about it

I read something here about this a while back. I was wondering if anyone here knows anything about it or has had the procedure done. And if so, if it was helpful I dont know what it is called exactly, but you have your cancer cells sent to a lab and they test it against all the different types of chemo to see which one is most effective in killing the cancer cells My mom has some fluid in her lung again and is going to ask if it can be drained. This is the time to get the testing done if we are going to do it thinking of you all~

I posted yesterday....but it doesnt seem like it went thru. I dont know what happened I wont go into everything I wrote yesterday and I will say that I am wishing the 2 of you all the best!!! It looks as though my mom will be starting the same treatment soon. We will know for sure after her appointment Monday. I'll be giving updates about my mom once she starts. Maybe if we share some experiences it will help us/them thru a little

I certainly dont want to sound too negative here, but the last thing he should do is give any false information to the nurses about eating. It is in his own best interests that his healthcare team knows exactly what is going on with him. For one, I believe the amount of chemo you get is in relation to your weight...so the less you weigh or the more weight you lose, the lower your dose of chemo (at least thats how it was for my mom) Also, weight loss and gain could be signs of other things factoring in, so again it is important for the healthcare team to know exactly why his weight is where it is so that they can attribute it to his not eating and not to something else more serious The shrinkage is really encouraging and is something to be happy about!!!! I hope it continues!!!!!!!!

Thank you for the replies!! I feel a lot better now thanks to your imput ladies I am glad for the 2nd opinion, and this time, unlike the 1st time, I get to go with her. In a strange way I'm looking forward to hearing from the dr and getting my chance to ask questions Its just the sitting and waiting that has gotten to us. When she was getting treatment we all felt like 'something was being done' Since the treatments stopped....well, we just dont feel that way anymore Thanks again

My mom decided to get a second opinion before starting her 2nd go around with Chemo. Though we all thought this was smart, we are now waiting around for her appointment She didnt have an issue with the chemo recommended and she is ready to go ahead with whatever is suggested, but since the beginning, she has only seen one dr. She started treatment and a clinical trial only a week after being diagnosed. A second opinion, she thinks, will put her mind at ease somewhat Its been about 3 weeks since her scan that showed a slight change to her tumor. She hasnt had any treatment since this scan and has a til Monday to see the new dr. We are worried that this waiting will only make things worse. Everyday that goes by she sits and worries that it is growing and that she isnt actively fighting it Any one here think waiting this long is a really bad idea?? Her current dr didnt seem to think so...he wasnt worried. He said as long as she could get a 2nd opinion within 5 weeks that she should go ahead and do it. She got one right away, the wait was only about 2 weeks Still....we are nervous. The type of tumor she has is rather quick growing they said at one point. The change they noticed last time was slight though. All the same, being in limbo stinks!!!! Best to you all~

I came back from having lunch with my folks just a bit ago Looks like she is starting Alimta next week. She is scared. She is also thinking about getting a 2nd opinion just to see if there are any other treatment options. She doesnt want to drive into the city though...so we will see if she goes thru with the 2nd opinion I've been looking around for posts about Alimta. If anyone has anything to add though..please do. I know very little about the drug My thoughts are with you all

Thank you both for the supportive words Dadstimeon...you are an inspiration. We know so little about this, so news of this sort really frightens us. We dont know the routine or the options etc. For my mom though....I know she is terrified by undergoing chemo again. Bunny, thanks for the explination. I guess we were thinking/hoping that since the nodes appeared to shrink down and not grow that they were now cancer free and that the lung could be operated on. I guess thats not how it works though

My mom got her results today. There as growth. They didnt get too specific with the size, all they said was that there was a small amount of growth but enough to know that the treatment she was on is not working. She had finished chemo about 2 months ago and was taking a drug to inhibit growth. It was called Irbitux. It didnt work..or stopped working The initial chemo had reduced the tumor in her lung by 80% and the nodes seemed to shrink down to normal ranges. We were really hopeful when they considered her stable at the end of that treatment Today the dr told her she could get a second opinion if she'd like. She starts a new chemo treatment next week. SHe is devastated. I wish they could just cut that thing out!!! I will never understand why they dont or why they cant Any encouraging remarks would be appreciated. Has anyone had luck with 2nd round treatments??

My mom lost her sense of taste during chemo. Along with that, many foods tasted AWFUL or turned her stomach. Smells of some things bothered her, textures of some foods werent appealing etc etc. I hear it is common This was depressing for her and she would often get annoyed when we tried to help. After all, she knew she should eat and try different things but she couldnt make herself do it at times. We would often make her ill just by suggesting foods! I did a bunch of reading on what to do to keep weight on during this period. The calories matter more than how enjoyable it is.....at least in the long run. The suggestions I read were to "add" calories to any and all food. Use heavy cream in milkshakes, on cereal, in coffee, in mashed potatos etc etc. Use and add sour cream to foods. Add cheese to food. It doesnt sound great for the heart, but that concern isnt as pressing as the immediate concern of keeping weight on My mom got thru by drinking milkshakes made with instant breakfast powder. We'd add extra stuff in there to increase the calories. We'd make lots of jello to keep her liquids up as well One part to the whole food factor is dehydration! Chemo really dehydrates you and the dehydration can effect you in many different ways including decreasing your appetite(SP?) My mom started to get more hungry after she would have something to drink Best of luck