Cindy RN

Got your pm, thanks so much. Hopefully I can get this worked out, or I will be sleeping in the lobby.

HELP!! Anyone who is going and staying at the Doubletree hotel for the weekend pm me. I can not get reservations, the special rate for us was to be 129, and they won't let me have it. They said it is 189!! I have told them who I was with and about the conference. Anyway if anyone knows how I can get ahold of Katie or Connie-there cell number or home pm me, I have tried reaching Katie today but I imagine she is busy getting ready to leave for tomorrow. Thanks Cindy

I had the cisplatin with the camptosar for 8 months, I did not tell the Dr about the neuropathy until then. I had read back then it worked better than the carboplatin. My feet and fingers were so tingly and numb I had to say something. He switched me to the carboplatin for the 9th month. I don't know if it being on it for so long that gave me a better outcome ??????? When it came back in 2003 he used the carboplatin and vp-16 and I had radiation because there was only one tumor. Someday they will come up with the exact combo to cure it and maybe even (PLEASE) an actual vacine for cancer. Cindy

Afew ideas-Are they giving him IV doses of the zofran with the chemo? If not that helped me Also there are Tigan suppositories, they are rectal so they don't feel like throwing up after there administration. I had the cisplatin and camptosar the first 8 mos. then had to switch to the carbopltin for my 9th mos., the cisplatin messed up my nerve endings in feet and hands so badly. Good luck. Another thing the zofran pill did not help me as well as the zofran that melts under the tongue, Cindy

Pallitive?? Bah Humbug!! I was diag with extensive sclc Feb 2001. I have had one relapse with only one tumor the second time (2003). There are some of us that keep on ticking. Read below to see my treatments. Cindy

Sounds GREAT!! SCLC does shrink fast. It does respond well to the chemo's, the problem is it returns at a greater rate than the others and grows so fast. My first relapse in Feb 2003 it was the size of a baseball and I had had my CT scan done just 3 mos prior to them finding it again. Look below to see the course. There several of us here that have lived longer than the ?? 1-2 yrs.?? they always say we have! There is always hope and God makes the final decision, not the Dr. Even tho some of them like to think their word is the final word! Cindy PS Glad you are going to Relay-a great means of hope and support, I have been involved since 2001 and would not miss it. Tho the monies raised are not evenly distributed between the reseaches for the different types of cancers, any breakthru helps each of us!

I guess in high school I smoked Viceroy-40cents a pack!! Then onto Winston 100's then generic 100's then, Marlboro lights 100's. I did quit in 2001 for 2 yrs, then the cancer relapsed and I started again-hiding it!! Now i still smoke BUT only outside and not much. Just can not get in the mood to stop totally again. Maybe one day!! Cindy

Ask the Dr for inhalers, they do help

I worked the ER for many yrs and heard the same thing!! I can not be having a heart attack- If he has those symptoms again and he is not on any blood thinners have him take an aspirin. Just a plain old aspirin. If he went to an ER and they suspected he might be having one that is the first thing they do. If he will not go tell him-- ------- to stay home and when his heart quits you will call 911 but by the time they get there you will be able to collect the insurance!! Sorry a little sarcasm always lightens the mood. Seriously, those symptoms are classic and he needs to be checked. It would awful to live thru the cancer and let a little heart attack get hime Cindy

Think cure first!!! Read below on what I had, my sclc was extensive when found and it has relapsed 1 time. I am still here 6 yrs and 4 mos after diag. Cindy

There is a correlation between sclc with the LDH (I believe) in cholesterol. Everytime I get my blood work that is one thing they check-an increase could mean an increase in the growth I think Cindy

I have one that is different and works great for me-prescription tho Tessalon Perle 100 mg or generic Benzonatate. Cindy

Those PORTS!!!! I have had mine in since 2/2001 and there have been times when it would not draw back blood, but flushed fine. They xrayed it a few times and it was in place. For more than a few yrs I had it flushed without getting a blood return. Thank goodness it was the same nurse so knew my history. Then all of the sudden about 6 mos ago there it was Blood! Who would of guessed. I keep going every month to have it flushed and so far so good. Cindy

Hey Hey Hey. I got on today and posted in the sclc forum. I then check in on General tonite and low and behold you all are checkin in on everyone!! Doing great-keepin busy-still ned and enjoying it. Glad to see all the faces on here-Love to all Cindy

I will have to post more often. It is so good to hear from ALL of you. The Relay yard sale is Saturday, I am baking like crazy for it. Hope the weather holds out. I will let you all know how it goes.

I thought I would drop a note and let you all know I am still here and doing well. As of this day I have been 6 yrs and 3 mos since my diag. See below to see treatment if you do not remember me, ha!! I have married off 2 kids and had one grad from college since that first day I was diag. Never thought I would see 50, but yet my kids gave me a surprise party for it! Right now I am getting things ready for our Relay for Life team. It is the first "SURVIVORS!" team we have had. Should be fun. I pray that my old OLD friends are doing well, I check in often tho have been busy with LIFE and not a lot of time to post!! That is good news! Please remember that ext sclc is NOT a death sentence, I was diag in 2001 and relapsed in 2003 but have been in remission since Aug 2003. Praise God. Good luck and prayers for all the new ones on here. Cindy (my pic of Roxy should be updated to include her baby we kept-BOB-what a name!)

I had one put in 2/01 while I was under having biopsies done. It still flushes and I would NEVER let them take it out!! I have not needed it since Aug 2003-last chemo dose-but if this thing ever comes back I have it in place and ready to go! I don't hardly notice it. it is under the skin right below your collar bone and does not move around. Cindy

I'll have my mocha frappacino! Oh what the heck, make it a mudslide. Glad to see you, Cindy

Ginny-I have missed you! I am still doing well. Glad to see you are involved in LIFE! Keep it up. The Duke would be proud, Cindy

My first go around in 2001 I did not get rad. It was extensive so I just had chemo. I had a PET done the first month after diag. 2003 when it returned-it was in just one area-I had 6 weeks of rad. I had the PET done a month afterwards.

Yes-Glad you found us. This is great place to find answers and support from the front line If you have some time fill out the profile for your MIL so we can see what she has had so far. I too, say YEAH for no wig or hat. I got to where I could go 'topless' here at home BUT when i went out or non-family came over I had to cover up. I wore scarves I made from holiday fabrics from wal-mart. I made a tie one for my pug. Glad to see you and ask away. Cindy

Don't you just love it when those'insensitive FOOLS' get their one ups!!! Glad your son was there to give the great come back. You are in my thoughts. Cindy

Add my sympathy to the others. Hope your trip was a safe one Cindy

I wanted to do this today because we may be gone tomorrow-just a trip-ha! I am so glad to have been with all of you for the last several years. I joined this group I think the first few days of the conception of the message boards. I pray that we all have a GREAT new year with lots of us in remission!! Can not ask for more than that. Love to all, Cindy

DO IT!!!!!!!!!!!!!!!!!!!!!!!!!!!! I went and got one back in mid 2001. I could not walk very far and was so tired during the chemo. I have found now that I am able to walk more in the store if I don't have to walk clear across the parking lot. Besides that my girls always want me to go shopping because they get front row parking!! I guess this is one benefit. Gotta look on the good side.