TAnn Posted July 16, 2005 Share Posted July 16, 2005 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 Quote Link to comment Share on other sites More sharing options...
Kasey Posted July 16, 2005 Share Posted July 16, 2005 Oh poor TAnn, I have no experience with Alimta, BUT I do have experience with shingles ! It sounds like it to me. I first had PAIN - no sign of a shingle anywhere. Then after a few days - can't remember exactly how many since it has been quite a while ago - I had a HORRIBLE outbreak. Mine followed the nerve up the side of my face, around my eye, into my scalp. I could not even lay my head down! Shingles follow a nerve path. Check and see if that sems to be the case - or is the pain and rash random? If it seems to be on a path - definitely shingles. I am certain the Alimta folks be chiming in with expertise. Maybe they will have more specific info for you. In the meantime, I wish a FAST recovery from this and the PAIN. You are due a BREAK - bigtime! Hoping for that break SOON, (((TAnn))), Kasey Quote Link to comment Share on other sites More sharing options...
richinsdakota Posted July 16, 2005 Share Posted July 16, 2005 Ive heard that shingles is a re-manifestation of the chicken pox most of us have as kids. Dunno if the chemo might bring it back out? I have no exper. with altima, so maybe this is one for "ask the experts"? Maybe theyre familiar with this..? Good luck..Rich B. Quote Link to comment Share on other sites More sharing options...
Patkid Posted July 16, 2005 Share Posted July 16, 2005 T, We don't know................we feel so badly to know you are going through this. We care and we feel so helpless to do anything...but we will pray fervently. Bri is hurting, right now, too..........He said he understands and to know you are not alone...especially spiritually. Love Bri and P Quote Link to comment Share on other sites More sharing options...
stand4hope Posted July 16, 2005 Share Posted July 16, 2005 TAnn, I don't know anything about shingles, but am praying the pain soon drops from 7 to 0. Thought I'd bounce this up so the people with shingles will see it and share their experiences. Love and hugs, Peggy Quote Link to comment Share on other sites More sharing options...
tnmynatt Posted July 16, 2005 Share Posted July 16, 2005 Don't know much about shingles, either. But, praying for the pain to go away! Take care. Quote Link to comment Share on other sites More sharing options...
Maryanne Posted July 16, 2005 Share Posted July 16, 2005 Hi Tann, Joel just got over the shingles, but his was not caused by Altima as he was not on that. They claimed stress related. But I feel it was from the Taxol as his showed up on his outter thigh 2 weeks after his last chemo treatment. And his leg nerve endings is where he always had his pain from the Taxol and this showed up in that area. Most of common place for shingles to show up is on the chest area. The doctor gave him Famvir 500 mg. He had to take 1 three times a day for 7 days. He took this along with his percosets for the pain. His shingles finally got scabs on them and is now pretty much gone. They were extremely painful and really spreads. At first he thought it was a mosquito bite, then it started to spread more and more each time he woke in the morning. If you look closely at them, there is a tiny white speck in the middle, which looks like it could be a bite. You doc. should be able to pick this up. It is a viril infection. You can only get it, if you had the chicken pox, and should not be around pregnant women who have not had the chicken pox, and also should stay away from children who have not been vaccinated again the chicken pox. It is extremely painful. I hope they find out what is causing your rash. Just wanted to give you the lowdown on Joels case. Maryanne Quote Link to comment Share on other sites More sharing options...
ellakc2 Posted July 16, 2005 Share Posted July 16, 2005 TAnn, I hope your pain is managed soon. Shingles are a bear. I know it gets old quick. You just want it to stop. Prayers and thoughts to you. Love, Mare Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted July 16, 2005 Share Posted July 16, 2005 Hi TAnn. I had shingles 6 months after my last chemo *tax and carbo*. Mine followed along the nerve of the S1 pathway....lower back and down the leg. It started with a dull ache similar to sciatic pain. A few days later the "pox" showed up. They were sore and itched and eventually turned into scabs. The pain that I had with them were not as bad as what others describe. I will tell you that I do know this about shingles. The pain does NOT cross the mid-line ever. And you won't see a rash with it as they are do look more like bites that follow a disticnt LINE. (The nerve) hope this helps. Cindi o'h Quote Link to comment Share on other sites More sharing options...
shineladysue Posted July 17, 2005 Share Posted July 17, 2005 TAnn, Mike had shingles after Alimta, but I don't know if you can blame Alimta specifically. He had gone in for his checkup and showed the doctor a rash that started on the upper leftside of his chest. His wasn't painful , but it followed across one side of the chest and eventually went under the arm and to the back on that side. Shingles follow a nerve. They are from the Herpes Zoster virus that caused you to have chicken pox as a child. In fact, you can actually give someone who never had chicken pox, the virus. It's my understanding that the virus lies dormant and can surface in times of immune deficiency, such as after being on chemo when your immune system is weakened. In Mike's case, he was given the drug Famvir which cleared it up in one week except it left a dried up pattern. The Famvir had a horrible effect on him and he has never totally recovered from that. We blamed the Famvir, but there were other changes in meds at the same time. I will also add that he had pneumonitis prior to the shingles. He was put on high dose prednisone therapy for that. Pneumonitis can also be caused by chemotherapy. Who knows if there is any connection to the Alimta. I can only say that after the Alimta, Mike had stable results on scans , but otherwise all hell broke loose and he hasn't gotten straight yet. I'm not sure what good all that does for you, but you can chalk it up to research. Sure hope you are soon feeling better TAnn. I understand those things can be extremely painful. Love and Prayers, Sue Quote Link to comment Share on other sites More sharing options...
SJAS Posted July 17, 2005 Share Posted July 17, 2005 TAnn, For several weeks before Steve's original dx, he was experiencing severe face pain which the doctors were trying to treat for sinus infection. Later the doctors said that they thought it was a reativation of shingles which he had many years ago. They told us that it can resurface when the body is stressed and the immune system weakened. It is awful. Hope you're better soon. (By the way, it was finally improved by acupuncture!) Quote Link to comment Share on other sites More sharing options...
Leslie221 Posted July 17, 2005 Share Posted July 17, 2005 I googled Alimta and shingles and found many sites that give basic info about Alimta and they also mentioned that before you take it you should tell your doctor if you've ever had chicken pox or shingles! So, it's got to be something that is sensitive to Alimta or aggrevated by it. Nothing went into any depth, so I'm not offering any website. But ask your doctor about these things: Before taking this drug, tell your doctor: If you have any of the following medical problems: chickenpox or exposure to chickenpox, gout, heart disease, congestive heart failure, shingles, kidney stones, liver disease, or other forms of cancer. Pemetrexed (Alimta)can cause a rash or itching, often between your treatments, going away before it is time to get your next treatment. Tell your nurse or doctor if you have severe rash or itching. Did they tell you these things: What drug(s) may interact with Pemetrexed? (Alimta) •anti-inflammatory drugs (NSAIDs, such as ibuprofen, diclofenac, naproxen, etodolac, ketorolac, flurbiprofen, piroxicam) •aspirin and aspirin-like medicines •probenecid •pyrimethamine •vaccines You will need to take folic acid (a vitamin) and vitamin B12 starting the week before your treatment with pemetrexed. You must take 350-1000 micrograms of folic acid every day for at least 5 days out of the 7 days before you start your first treatment with pemetrexed. Then, once you start treatment, you need to take folic acid every day, and continue this for 21 days after you get your final treatment. This protects your body's normal cells from the effects of the chemotherapy. You can buy folic acid over-the-counter. If you have any questions, or need help in deciding which folic acid product to use, ask your nurse, pharmacist, or doctor. Your doctor and nurse will give you your first vitamin B12 shot the week before your first pemetrexed treatment, and then about every 9 weeks during treatment. And here's something you can ask about to treat the shingles (if that's what it is): Pregabalin oral capsules (Lyrica, Pfizer), for the management of the pain that results from shingles or diabetes-related nerve damage Gosh, I hate that you have to go through this. I had a very slight attack of shingles a year ago or so - around my backside and there was a lot of pain first with nothing to show for it and then, like Kasey said, the welts showed up. I only had about 7 of them, but they were very sore. They eventually just went away and so did any pain. Good luck, Leslie Quote Link to comment Share on other sites More sharing options...
pammie Posted July 17, 2005 Share Posted July 17, 2005 TAnn, thanks for sharing your experience. No telling how many people you have helped. Docs don't know everyhting so I am so thankful you have told your experiences and what might be going on. Gives us more things to ask the docs about and help us deal with it. So sorry you are experiencing the rash and pain. praying for relief soon. pammie Quote Link to comment Share on other sites More sharing options...
Nushka Posted July 17, 2005 Share Posted July 17, 2005 Tann, This is the pits. I hope it clears up soon and that the pain goes down to zero. Ask your doctor about Famvir. It is a really good antiviral medicine. My son in law had shingles and he took it ...after a few days it got much better. Will continue to pray that you get better very soon. Nina Quote Link to comment Share on other sites More sharing options...
Fall54 Posted July 17, 2005 Share Posted July 17, 2005 All I know about shingles is it is suppose to be only on one side of the body as it follows a nerve. My Grandmother had it many years ago and was in lots of pain with it. I am praying for you TAnn and hoping they get the pain managed a lot better than a 7!! god Bless you, Jane Quote Link to comment Share on other sites More sharing options...
TAnn Posted July 18, 2005 Author Share Posted July 18, 2005 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 Quote Link to comment Share on other sites More sharing options...
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