TracyD
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Posts posted by TracyD
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STABLE!!!!
in HOPE
Got the results of my first scans since I started Tarceva and they say STABLE!!!!. My doctor says this is very good news. We are hoping that my next scans will show shrinkage as, in general, the biggest response to Tarceva comes in the first 8-12 weeks. A good friend told me that you don't put a car into reverse without stopping first. So the cancer has been stopped, now it's time to put it into reverse!
Thank you all for all of the prayers and support, it means so much to me and my family. Sometimes I feel like I'm all alone with this horrible disease, but then I come here and I feel happy. It is sad that there are so many of us with LC, but I don't feel alone anymore.
Tracy.
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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.
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Welcome Lillian.
That is a beautiful name, my mother is also named Lillian. I sent you a PM but I still wanted to give you another hello. I read your post with such anguish as two months ago I was standing in your shoes. I can tell you this, it does get better. At first you can't eat, or sleep, and you do a lot of crying. You've read the statistics online and you wonder not are you going to die, but when. These are all normal responses and every single person on this website has experienced them, whether for themselves or for a loved one. Use their knowledge and support, lean on them, they will help you through.
I will pray that you are a candidate for surgery and that this disease might be taken away from you. But remember that if that is not possible all is not lost. There are treatment options out there, and there are many survivors. You are young and healthy, and that will go a long way in your favor. You must begin to believe that you will be a survivor, you are not a statistic. You must believe that you will live to see your childrens birthdays.
For now concentrate on getting the best dr. and the best treatment. Once you have a plan you will feel empowered, and your fighting spirit will kick in, and you will begin to kick the living daylights out of this thing!
Prayers for you and your family.
Tracy.
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Dear Carleen,
A good friend told me "pray boldly for what you want because god listens." So, I am praying for a miracle with you and Keith, that he may be healed, and that someday you may put this horrible disease behind you and start living the life you deserve.
Tracy.
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Way to go! Now go give those kids some extra, extra hugs!
Tracy
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Thanks Karen.
I'm doing well. I had my scans last friday but I won't get the results until this friday. I'm trying very hard not to think about the results, I've got a lot of living to do between now and friday so I'm taking it one day at a time and trying to worry about tomorrow tomorrow.
I feel like we're living in a bubble right now, everything is going along fine and things are routine. I worry that if this treatment isn't working our life is going to be turned upside down again and I so don't want to put our kids through that. So, we hope for the best and prepare for the worst, and say a LOT of prayers.
I'll let you know friday goes.
Tracy
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Stable and shrinkage, what beautiful words!
Tracy
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Thanks Sandra!
I will be trying that next if the rash comes back.
Tracy.
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Oh Andrea, I'm so sorry about the baby. You are right, it is not the worst thing in the world, but it is a terrible thing and you still need to grieve. You might only have been pregnant for a short time but in that time you WERE pregnant, and there was a baby, and you loved it. I know from experience how painful this is.
Please know that I am thinking of you, and praying for you that one day you will be holding a beautiful little baby.
Tracy.
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Hi krissie,
You are so right to want a cure, stopping the progression is good, but beating this beast into oblivion is better. I do not have BAC, but as you can read in my profile I too have stage IV LC and am currently being treated with Tarceva. I have only been on it for 4 weeks and I don't have scans until next week so I do not yet know if it is working.
I am very curious, when were you diagnosed? How long have you been on Tarceva?
I admire your attitude, you are young and you DO need to be around for those kids and you WILL, you will do WHATEVER is necessary and get treatment wherever it is that will make that happen.
Lots of positive thoughts and prayers coming your way!
Tracy.
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Hi Antoinette,
It's so weird that you are asking about this because I have had some weird pain. First of all, I am so paranoid about every pain, I kind of assume everything is caused by the cancer and it makes me crazy!
In the past week I have experienced increased discomfort around my lung, I wouldn't call it pain, but an increase in the discomfort I had already been experiencing when I sneeze or cough. I told my onc. at my consult last friday and he said not to read anything into it, it could be caused by the cancer in the lining, or scar tissue from it healing, or something completely unrelated. My scans are scheduled for 6/2 and unless somehting "significant" happens, that will remain the date. I know I have visions of the cancer just racing through my body. I try not to, but when you know you have something like this growing in your body it is a bit difficult sometimes not to assume the worst. I just keep telling myself that the tarceva WILL work.
The other day I had excruciating pain in my abdomen and I thought "oh my god, what's the cancer doing to me now?" Long story short, a couple of Mylanta tablets took care of THAT problem. I don't know if it was caused by the Tarceva or not, but it was not like anything I've experienced before.
How long until your next scans? If they're not soon I think I would push for a sooner date. In the meantime I pray for you that the Tarceva is doing its job and that the cancer is just shrivelling up and dying and it is its pain you are feeling!
Tracy.
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Hi Jim,
I glad to hear you're looking good. The rash is pretty impressive isn't it?
I started Tarceva on 4/28 and my rash blossomed in 5 days. I too scared children, and most adults too. I took an oral antibiotic for 10 days and I use a topical one a couple times a day. The rash cleared up pretty well and it remains that way even though I've been off the oral antibiotic for 3 days. First sign of its return and I'm calling the doctor for another rx. Right now my skin is just a little blotchy and very dry, no more of those horrid pimples!
I wonder how all the Tarceva users are feeling. Do you notice a significant difference from the tarceva? are symptoms going away? I personally am fairly asympotmatic so it's hard to know if the stuff is working. The ache in my ribcage is still there, no better, no worse. My breathing has never really been effected, I just have a cough which seems to have lessened. I don't have scans until next friday so I'm just trying to stay positive and believe that it's working.
I'm looking forward to hearing from the rest of you Tarceva users out there!
Tracy
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Way to go Auntie!!!
Love,
Tracy
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Hi Antoinette,
I saw my Dr. today and he prescribed both Clindamycin and minocycline. He had no problem with the oral antibiotic, as a matter of fact he said that it was necessary due to the risk of infection from the broken skin.
Please do not worry about what your Dr. thinks. You are not being vain in wanting this "rash" (I think I like your description of the "pox" bettter) to go away. This is not one lonely pimple on your face, this is a face full of them, as well as ears, nose, neck, chest, scalp, need I go on? I know I just want to cry when I see myself in the mirror.
I too use Cetaphil products, I love the layer of moisturizer the cleanser leaves on my skin. I douse my skin with an extra emollient moisturizer at night which helps a lot. Prior to taking Tarceva I never would have considered putting something so heavy on my skin ... times sure have changed.
I wish you luck and hope your Doc. gets you something to help.
Tracy
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Hi Antoinette,
I too started Tarceva on April 28, and though my rash doesn't sound quite as bad as yours, it's pretty bad just the same. My face is totally covered with those horrid pimples and it seems to keep getting worse. I did notice that the rash on my chest and neck seems to be subsiding though, so maybe this will move on up to my face soon! When they told me that a side effect of the Tarceva was a rash I figured okay, how bad could it be. I had no idea.
I don't have any recommendations for you at this point, but I am calling my oncologist today to see what they can suggest. I will post later today with any news.
Tracy.
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You guys are so great! I was surprised to read my name on a subject line so I thought I'd check it out. Thank you for asking, and caring, and praying.
I'm doing well, as is my family. My face is taking a beating from the Tarceva
, but I've noticed that my cough is significantly less 
. I try not to think about it too much, I just have to believe that the Tarceva is doing it's job. I think my friends think I've gone completely crazy because I tell them that I talk to my body everyday. I tell it we're going to get rid of this thing, and that I'm going to take good care of it and give it what it needs, including the Tarceva, to fight. You know, kind of a daily pep talk (it does seem a bit crazy when I read it!)I don't go for scans for 4 more weeks so I'm taking this time to decorate my new house and enjoy a little me time before the kids get out of school for the summer.
Thanks Again!
Tracy.
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I'm so glad you're feeling better! YEAH!
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I've just got to weigh in on this one! I started Tarceva 9 days ago. For the first 4 days I thought I was getting off easy, no side effects at all, then came day 5. The rash started off light, then worsened over the next few days. My chest and neck are covered in what looks like the measles and my face looks like an adolescents. So far it's not unbearable, it gets a bit itchy sometimes but nothing too bad. I'm with you Jim, why the face?
I too have had a major reduction in the coughing. I won't say it's gone, but I go for long periods of time, up to an hour, without it. I so pray this means the Tarceva is working. I'm glad to hear that there's a possibility this horrid rash will go away. I feel so vain even thinking that when I stop and consider why I'm taking this drug to start with, I know I've got bigger problems ... but again, why my face?!
Good luck to all you Tarceva takers!
Tracy.
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I just recently started Tarceva and all I can tell you is what the doctors and my own research have told me. Tarceva can do all of those things, or possibly none of them. In a minority of people the tumor can shrivel up and die, in others the disease will not progress, and in others it will have no effect and the tumor will continue to grow. I do know that nonsmoking women have the best response to the drug overall, that is why I chose to try if first.
I am receiving Tarceva in a clinical trial as a first line therapy. My insurance will only pay for it as a second line, after a chemo treatment has failed. They will also pay for it if we find that it is working for me and I get out of the trial.
As for side effects, I don't know. I have been on it for six days and all I have to show is a mild, slightly itchy rash on my upper torso that I haven't treated with anything but a good moisturizer. I also have some small mouth sores, also not bothersome.
Hope this helps.
Tracy
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Hi Anna,
I just want to say hello, welcome and congrats ... it's wonderful to hear you were able to undergo surgery. I'm 39 years old, married with three kids, and I was recently diagnosed with stage IV NSCLC. I am not a candidate for surgery so I will be keeping my lung.
I'm sure you will find the support you're looking for here as there are many LC survivors.
Tracy.
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Hi Gloria,
I'm so sorry to hear about Anne, but I'm so glad you found us. I too was recently diagnosed with stage IV NSCLC, and I know how scary it can be. There are many survivors here and their stories will give you the hope and strength you and Anne need to fight this beast. I wish I could offer you some advice but I am new to this myself and am still learning.
I am sending you and Anne a lot of prayers and good thoughts. I can't believe a Dr. quantified Anne's life expectancy, they have no idea how long someone might live. Many people here have defied the odds and beaten the statistics. Fight and stay strong, I will pray that Anne will be one of them.
Tracy
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Well, I popped a pill today.
I wasn't sure how I was going to do it, a long drawn out ceremony or quick and painless. I took one look at that little pill that looks like an aspirin, and I tossed it down, chased with a bottle of water. I feel better just knowing that it's in my body, royally pissing off this cancer. Oh yeah, the results of all my scans were clean, except for my chest of course. I was kind of hoping that b*stard had gone away, but no. The good news is there was not much change, a little growth of the tumor, maybe.
I've thought a lot about visualization, and the many great suggestions from everyone. I finally decided on the boxing gloves, I like the thought of putting on my boxing gloves and just beating the living crap out of this thing. Now we just wait ...six long weeks. We had just about moved into our brand new house when we found out about my dx and at the time I thought that I'd never get to make my house a home for my family. I know differently now, it's time to get to work. So I'm going to paint, and hang curtains, and plant flowers and do all the things I had planned to do before this crappy disease came calling.
Speaking of gardening, has anyone had bad side effects from sun exposure while on Tarceva? I think I'll need a hat.
Tracy.
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Well, it has been a long couple of weeks but treatment is finally here. I am in a Tarceva trial which is studying the benefits (if any) of taking chemo w/Tarceva. The trial includes only non-smoking and "light" smoking women and consists of two groups, one taking only Tarceva, the other Tarceva w/carboplatin and paclitaxel. I spent today getting scanned from head to toe, tomorrow I will find out which group I'm in, and friday...treatment!I'm trying not to think of the new anxiety that comes with wondering if the treatment is working.
I'm also taking a stress reduction class starting tomorrow. I hope to be able to control/release some of this anxiety w/o having to be medicated. I am still enjoying Chicken Soup for the Survivors Soul, it's what I read when I need a megadose of inspiration.
We're all hanging in there. The kids have settled down a bit. Unfortunately we had to reschedule our counseling session because I had to go get scanned. The new appt. is not for two more weeks but I think we can make it.
Thanks for all the support!
Tracy.
, but I've noticed that my cough is significantly less 
. I try not to think about it too much, I just have to believe that the Tarceva is doing it's job. I think my friends think I've gone completely crazy because I tell them that I talk to my body everyday. I tell it we're going to get rid of this thing, and that I'm going to take good care of it and give it what it needs, including the Tarceva, to fight. You know, kind of a daily pep talk (it does seem a bit crazy when I read it!)
Boston area walk/fun run
in GENERAL
Posted
I'm in the Boston area, what can I do?
Tracy.