jcawork Posted May 22, 2005 Share Posted May 22, 2005 I just have not been able to post. I am have been too upset and sick.Thank-you for the emails. Brain mets were confirmed (2) and I just finished WBR (20). I am a dishrag from it. New node in other lung not sure what it is. New stuff in right lung is now considered fibrosis. Pet showed met to liver, Abd. MRI said it isnt a met. Pet shows hot spot on T-10 of spine, not confirmed could be DDD. I have had this bizarre left flank pan for a month now that they cant figure out. Didnt have ovaries removed last week as I was too sick from WBR and got my first horrific period in a year the week I was scheduled. Not sure if I will have surgery. Ovaries are not confirmed yet as mets as its quite unusual, but possible and they are huge. I have also had a lot of weird neuroendocrine symptoms since a week before I got the bad news ie, diareah, dizzy,feel weak, no appetite, tachy heart etc... Start Topo tommorow or next week. Making decision tonight. Usually, you get a break for a week or two before you start chemo after WBR. I can start right away, but I am so blown I am not sure what I should do. My radiation Doc allowed me to have tx's on the weekends too to get me to chemo quicker. Mentally, I am a mess. I am very depressed and can't help but think about the poor prognosis. I almost cant handle reading the board because of the bad news and the way it possibly illustrates my own future. I just cant seem to pull out of the hole I am in. Chardonnay and fudgesickles arent even working this time. My plan is to just put one foot in front of the other and try. I am so upset that my family must go through this, again. My husband is also ill w/ Hep. C and is now being worked up at NIH. I hang onto the few extensive's who are still surviving and can only hope. Wish more extensives would post. Thanks, Jen Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted May 22, 2005 Share Posted May 22, 2005 Very sorry Jen. Prayers for the best. Rich Quote Link to comment Share on other sites More sharing options...
rogfam Posted May 22, 2005 Share Posted May 22, 2005 Jen, I'm speacheless. i'm so so sorry. I barely made it through your post... I know you have wonderful friends here and that there will always be people here for you, trying to encourage you and lift you up, and just listen and give you a shoulder to cry on. I wish I could take this away from you, and everyone else here. I will be praying for you. Don't ever give up, there is always HOPE. ((hugs)) and prayers for you and your beautiful family. Christy ps my mom is a five year survivor!! I'm looking for the day you post on your five yr anniversary too! Quote Link to comment Share on other sites More sharing options...
Addie Posted May 22, 2005 Share Posted May 22, 2005 Okay...I'm gonna try again to cast a little better light on things for you (Brat calls this Addietude ) New node in other lung not sure what it is. Well, hey...if they're not sure then maybe it's just a benign node....right? I've got one in my left lung...actually, had two of them...that is still there, doing nothing, since 2003! One of them seems to have disappeared. New stuff in right lung is now considered fibrosis. Fibrosis. Not cancer. Sounds like good news to me! Pet showed met to liver, Abd. MRI said it isnt a met. Still some question here, it appears...so it's possible that whatever is on/in the liver is NOT a met....eh? Again...not definitive bad news. And I had four liver mets, one of which was 4 cm and all were reduced by about half after just three cycles of Topotecan!! Pet shows hot spot on T-10 of spine, not confirmed could be DDD. Uh....I don't know what DDD stands for....but if this hot spot is not confirmed as a met...then once again, perhaps it's NOT a met!! I know if it "looks like a duck and quacks like a duck" applies in many instances....but with PET scans....it can look like a duck and quack like a duck and even light up like a duck....and still be inflammation or an infection or arthritis or something ENTIRELY not duck-like! I have had this bizarre left flank pain for a month now that they cant figure out. Unless this is some sort of radiated pain from your enlarged ovaries....I'm at a loss. You will recall Jen, that I have some edema where my neck joins my shoulder. Have had it ever since my relapse...and the docs "think" it's from something (a tumor) pressing on an abdominal vein...but nobody's sure and nobody seems too worried! I just keep mentioning it...because even with shrinkage of the cancer in my pancreas/liver...the edema has NOT gone away! But sometimes we get weird symptoms with this disease that nobody can quite figure out. Your flank pain may just be such a symptom. Ovaries are not confirmed yet as mets as its quite unusual, but possible and they are huge. I have also had a lot of weird neuroendocrine symptoms since a week before I got the bad news ie, diareah, dizzy,feel weak, no appetite, tachy heart etc... At some point those ovaries need to come out...but right now chemo is more important. I'm in a similar situation with "something" on one ovary. Mine will come out too...eventually...but right now chemo is the priority. Some of your other symptoms could easily just be nerves, Jen. Fear and nerves. I assume you're having regular bloodwork. Low counts would cause some of these symptoms...but if your counts are decent, then my money would be on nerves. I know when I got the word on my relapse that my appetite went right out the window. When you don't eat...if you get up to move around...sometimes you get dizzy if you move too fast. There are a lot of unanswered questions at this point, Jen...and all you can do is take it a step at a time. The WBR is done. You'll start chemo soon...and as I've told you, I've had virtually NO trouble with the Topo...other than sinking counts after my 4th cycle of it. I know I had to be just as scared as you were when I was first told this &$%# was back...and in two major organs. But I cannot live like that....in daily fear and angst. I literally WILLED myself NOT to fear this until it was a lot more serious. At that point, I figured I had a shot again at beating it into remission...AND although my gut wasn't feeling good...I was still able to get up every day, get dressed, live a reasonably "new normal" life. I shot thru that initial fear and visualize daily, that the chemo is killing this &$%# off and my organs are healthy and "slick with stainless steel" so that no more cancer cells can attach anywhere in my body! I visualize the cancer cells drinking chemo cocktails and dying....only to be flushed out of me thru a stainless steel bladder!! My way of saying, "P&$$ on you, cancer!!!" Will yourself to believe it's possible to gain a good long remission, Jen, at the least. My hubby - ever the optimist - still talks about my being "cured". I no longer really try to correct him...because who knows, maybe a miracle WILL happen!? But at this point, I'm just pushing for a good, long remission and continuing to feel as good as I feel right now. I played 9 holes yesterday...shot a 45 (which ain't bad for not having played but a few nines since September of 2003)...and didn't even take a nap when I got home. I know you love to garden. Slather yourself up with lotion, put a hat on and go to the nursery and buy some plants. Then go dig in the dirt. Do some OLD NORMAL stuff...and try to distract yourself until the chemo kicks in and starts to work. You'll feel better once that happens. But meanwhile....LIVE honey. Live your life with as much joy as you can and do what makes you happy. It will replace the thoughts of fear in your mind...if you can look at a pansy or petunia...hold in in your hand...and then dig a hole and plant it!! Don't give up. Topotecan works! It's gonna help you feel better and BE better. Quote Link to comment Share on other sites More sharing options...
jcawork Posted May 22, 2005 Author Share Posted May 22, 2005 Addie, As usual your are the voice of reason. I have been doing some of the normal stuff (gardening a bit) as I dont want the family to know just how sick I am, but enjoying I am not. Feel unsteady on my feet though. Hoping that will come again (joy). DDD is degenerative disk disease which I knew I had, but had not lit up on a pet before. Unable to confirm if its a met. The only good news is the MRI of the abdomen is considered the gold standard over CT or PET and they have confirmed not a met. Thanks for the encouragement. I wish I lived in your head instead of mine. Love, Jen Quote Link to comment Share on other sites More sharing options...
Ry Posted May 22, 2005 Share Posted May 22, 2005 Well Jen...just continuing to put one foot in front of the other and walking sounds like a plan to me. I feel so bad for you. Are your kids at an age where you have seen "Finding Nemo"? If so, "just keep swimming" works too. Maybe fudgesickles and champagne??? I am just amazed by you and your strength to handle all you are going through. Rochelle Quote Link to comment Share on other sites More sharing options...
Wendy Posted May 22, 2005 Share Posted May 22, 2005 Hang in there Jen! Read and re-read Addie's post - there is light and hope. Wendy PS - I have a friend who doesn't post but just hit 6 years and was an extensive sclc. She is doing great! Quote Link to comment Share on other sites More sharing options...
Maryanne Posted May 23, 2005 Share Posted May 23, 2005 Hi Jen, So sorry for everything you are going through, Just keep taking one day at a time. I pray there is a breakthough for you. Listen to what Addie says as she has been through so much of this. Try not to think of the negative side, as there are so many unanswered questions right now. That could turn out to be postive results. This new treatment could really work. Try to stay positive about that. Praying for you and your family. Thank you for posting and keeping us updated. I was wondering how you were doing. Maryanne Quote Link to comment Share on other sites More sharing options...
Lisa O Posted May 24, 2005 Share Posted May 24, 2005 I am so sorry you are in this very rough stretch. I just know there is hope for you and that you will find long many good times ahead. You and your husband are in my prayers. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.