TAnn

Peggy, I don't know how much help I can be since I've only had 1 Alimta treatment so far. The first night I had Alimta I got a horrible rash all over my body. I had it in my scalp and from my neck down, front and back and both sides of my body. It was like a sunburn with blisters that itched. I thought I also had the shingles, but doctor says the rash would have only been present on 1 side of my body. It lasted about a week and a half. I was also in extreme pain the day of the treatment and they had given me Dilaudid, morphine and oxycontin. Don't know if any of this had anything to do with the rash. I was in bed for about 2 weeks and a few days after the treatment, mostly due to the pain in my back, but also was very fatigued. My hair started falling out 2 weeks after treatment. It still is falling out daily. Lost my appetite completely and drank boost. On my 2nd scheduled Alimta day, I couldn't have the treatment due to extremely high liver values on my bloodwork. 2nd Alimta postponed for 1 week to see if liver values improve and to get ct scan of the chest and abdomen. The last 5 days have been much better with the pain, down from a 10 to about a 4. TAnn

Bravo Lisa!!!! Finally, they are addressing what we all know is a very important issue!!!! Please keep us updated on when it will air! TAnn

Peggy, You get some good rest and know that I'm praying for you and Don. We are here for you, always.... TAnn

Cindi, Yep, I'm the one you need to talk to about pleural effusions. The Pluerex Catheter is the same thing I had, they call it the Denver Catheter here, but it is the same thing. I had mine in 5 1/2 weeks, and my husband drained it for me every evening when he got home from work. (Can you imagine, what a thing to look forward to ) The procedure to have it installed is pretty quick. They don't knock you out, they just give you a local, but ask them to give you something to calm you down, I did and they finally gave in and it helped me get through it. They make 2 incisions just under your ribs and insert this tube with holes all in it up into the pleural cavity of your lung. They keep it in with 2 stitches and then a portion of the tube hangs out of your body with a "valve" on the end. They give you a kit to take home with you to do the draining. The kit includes the bottles you will be draining into and the necessary accessories like gloves and gauze. You just attach your tube to the tube on the bottle and open the valve and it drains by itself. Not pleasant, definately not fun, but only temporary. Some people only need them in for a couple of weeks, I needed it in for 5 1/2 weeks, but the good news is that my fluid has remained under control for over a year now. When you are no longer draining any fluid, you get to have it taken out. Sorry for the graphic description, but I wish I'd had it when I had this procedure done. Feel free to pm me if you want more info or just support Cindi! TAnn

Thanks for all of your responses. I always am amazed at the support I get from this group. You are all wonderful. Peggy, yes I did have the decadron the day before and the day after the alimta and they gave me some decadron the day of treatment. I've been on so many meds this past month, there is no telling what caused the rash. Also, for those who are monitoring Alimta side effects, my hair is falling out BIG TIME. I've decided to just let it fall out and see what's left before I shave my head AGAIN! What was growing back was really just someones sick sense of humor, you call THAT hair???? So.... let it fall out, that's the least of my worries! TAnn

Well, I met with the doctor today to see about getting my 2nd dose of Alimta. It's not going to happen this week. Seems my bloodwork came back with my liver values really high. (most were double the normal) My doc wants me to have a chest and abdominal ct scan on Friday to rule out any liver mets. He really thinks this is a very tiny possibility based on my last ct scan, but wants to be sure. He also wants to wait a week for the 2nd Alimta to make sure my liver values go down because this chemo can cause liver problems as a side effect. We are also going to see if I get the horrible rash that I got after the first dose, or if it was from all the pain relievers I've been on. It's all a guessing game. I wasn't expecting this. Alimta is supposed to be so "easy"! Ha Ha! There is nothing in this battle that is "easy" I'm finding out. After seeing the remains of the rash, doc says it definately wasn't shingles, like I was thinking. Well, that's what I get for practicing without a license!!! It is an "all over" rash and shingles is definately only on one side of your body. Pain is a little better, trying to manage it with Advil only and get off all the high powered stuff that makes me a Zombie! TAnn

Great News!!!!! Enjoy the party!! TAnn

Oh Peggy Sounds like a mixed bag for sure. I'm sure you will have more answers tomorrow, for now it is just a waiting game. Sounds like his team is wonderful and ready to get a plan together. I'm with Don, hospitals are horrible, but at least you can rest easy that he won't be on any tractors in the next few days! I've been thinking about you and Don and including you in my prayers..... TAnn

Peggy, Sounds like just what Don needs is a couple of days of bed rest. Hopefully the blood test will be a good report. TAnn

Wow Bill! This is fantastic news. What a great report for the Tarceva! You should feel some relief now, especially knowing that you had to fight so much to even get your wife the Tarceva treatments! I am so happy for you and so glad to hear that her onc is back on the attack and adding Avastin to the arsenal! I just love this good news.......... TAnn

Listen to Fay A. The rash is cyclic and will start to even out soon. I didn't have the sweats or hot flashes with Tarceva, but have experienced them with the Alimta. I guess it is just proof again that we all react differently to these drugs. Oh how I wish I could go back on Tarceva now. I haven't had a really good day since my 1st Alimta treatment the beginning of July and now it is time to go back and get # 2. Uggh, I still don't know why we have to suffer so much with the treatments..... Hope Bill is feeling better soon, tell him to give it a little time, he will get used to it and the side effects will even out soon. TAnn

Peggy, How scary for you all. Yep, Don is definately stubborn. He has hopefully learned that the more you do, the more you pay when it comes to pain. Make sure he just lays on the couch and gets into a comfortable position and rests. I can tell you that if I try do do even something small, like sweep the floor, I pay for it in the evening with the back pain. Let him know that it's ok to just do nothing, until he is feeling better. Better not to push things unnecessarily. Glad he is feeling better now. TAnn

Carleen, You bet ya! Stable is GOOD! I know how Keith feels wanting to go backwards a bit, but take what you can get.... Congratulations on stable! TAnn

Cathy will be missed. I am so sorry for your loss. TAnn

Val, I am so sorry for your loss of your wonderful mom. May you find comfort in God's loving arms and know that your mom is no longer in pain. TAnn

Beth, You have my ongoing prayers and positive thoughts. You deserve a big break! I hate hospitals! I hope they get you under control soon! TAnn

Beth, Oh sister do I hear Ya!!!! It's so upsetting when they are giving you the hard drugs and they don't even touch the pain. I even went to the pain management clinic. All they did is give me higher doses of what I've already had and made me throw-up every few hours. No help at all! I hope you find some relief. I ended up doing 10mg of oxycontin in the morning and took 3 advil every 3 hours for breakthrough pain. Didn't totally help, but had a good few minutes to an hour after each dose. I'm with ya..... TAnn

Thank you all for your responses. After reading a little more and hearing of all your experiences with shingles, I firmly believe this is what happened to me. The nerve track that mine took was where I had the Denver Catheter, a constant source of pain for me anyway. The rash exploded all over, front, back, top, bottom, arms, it was red with the blisters and has now turned a lovely brownish color with still some redness. The pain is still difficult to control. I'm almost done with the predisone pack, don't know if that worked or not, but this is going on 2 weeks now and I am really looking forward to some relief. I'm also concerned about the comment about using aspirin or nsaids like ibuprofin w/Alitma. What else can I do? If these help my pain even a little, I'm going to take them. In the meantime, I'm still waiting for that break in the pain...... Thank you for all your support, it really helps. TAnn

Cathy you are a fighter. Save your strength for your family and know that we are here praying for you to be comfortable and pain free. Sending you my prayers and love, TAnn

I've been doing a little (and I mean very little) reasearch about shingles. When I was in the ER with the extreme pain one of the nurses wondered if it could be shingles, although they never actually SAID that I had it. This caught my attention, because I think two of our members who are on Alimta got the shingles also. I am pretty convinced that all the pain and what has turned in to the most HORRIBLE rash I've ever seen is definately shingles. I'm on a prednisone pack for 5 days to see if it helps, so far the pain is a little more manageable, like from a 10 to a 7. Still can't do anything really at all. Leave it to me to have the worst experience ever with the easiest chemo ever!!! Any one else's thoughts on the shingles idea? TAnn

Hi all, I've been away from the boards for about a week now. Last Wednesday, I had my first round of Alimta. What was supposed to be 2 hour hospital visit (at the most) for the infusion turned into a 13 hour ordeal. My pain had become worse in the days prior to the treatment and my doc put me on Oxycontin 10mg twice per day with a "kicker" of Oxycodone as needed for breakthrough pain. This was started Tuesday night, the night before the Alimta. Oxycontin is a timed release med and you have to take it for a couple of days before it starts working. Well, on chemo day, MD Anderson was running behind (by about 3 hours) and by the time I got into a chemo room my pain was untolerable. I waited another hour for them to send down something for the pain from the pharmacy, they sent 2mg of morphine sulphate. Did absolutely NOTHING for the pain. I had the chemo and went to see my doctor a couple of floors down, in a wheelchair, and they sent me to the emergency room. They did a back MRI and found nothing, no mets or new growths or compressed discs. However, you could "visibaly" see that my back was swollen in the area of pain. They sent me home after maaaaany hours with a double prescription of Oxycontin and Dilaudid for breakthrough pain. Threw up as soon as I got in the door at home! On Friday, went to the pain mangement people and they kept me on the double and said I could take Aleve every 12 hours as needed for the inflammation. No matter how much sense I made regarding the inflamation, they still stuck w/their Oxycontin. I hate Oxycontin. Sorry this is so long, but it may help others who go through a difficult time with Alimta. I have a horrible rash, probably due to the Alimta, I am almost always queezy, yesterday was ok because I didn't throw up, but today I'm feeling naucious again.This is the most difficult week I've had in a really long time. Alimta is NOT an easy chemo for me. I am looking forward to feeling better, but feel I may not..... TAnn

When you first start Tarceva, the side effects hit you pretty fast and harsh. I was on it for 6 months. I was always tired, but definately more fatigued when I first started on it. It DID get better as my body became used to taking it and the rash got better too. The strange thing is that my rash came back with a vengence about 4 days before being taken off of Tarceva. I've been off of it for about 1 week and my rash is still there! Wierd! TAnn

Thank you all for your firm push for me to call the doc. I called this morning and they suggested that I take the oxycontin that they prescribed previously when I had the Denver Catheter. I will admit that I am part of the problem here. I want to stay as functional as possible and am reluctant to take the strong pain meds because they just knock me out and I get nothing done during the day. My nurse practitioner gave me a good little pep talk this morning and said sometimes you just have to give in and you will be amazed at how much better you feel when you aren't in any pain. I guess, if you really want to know the truth, I feel that once you start taking the "hard stuff", you will always HAVE to take it. I don't want to be battling the meds AND cancer at the same time. T-Bone's experience comes to mind and really scares me. Tomorrow is Alimta. Hoping it works with the 1st dose and wipes away the pain. (Wishful thinking! ) Starting Oxycontin tonight, does anyone else take anything else that helps with pain and doesn't knock you out? TAnn

I've been off Tarceva only since Wednesday while waiting for my first dose of Alimta. The pain in my back and a new pain just under my right ribs has tripled since then. Yesterday I spent the day in bed, today was ok, until about 1 hour ago and I'm finding NO relief! I've tried Advil, Lortab, Oxycodone and now using my dependable headache powders - Goody's. Some take over an hour to work and then only work for about an hour leaving me with 2 hours of misery before I can take anything else. I don't understand why it has gotten so bad so quick? Praying for some relief. Thanks for letting me whine.... TAnn

Kathi, Please accept my deepest sympathy for your pops. He was a real fighter and was lucky to have you with him. TAnn