stand4hope Posted July 31, 2005 Share Posted July 31, 2005 My husband's onc said that since Alimta is so new, they really don't have a lot of experience yet as far as side effects and how people react. I told him about some of you and that others had SOB problems, as well as some other problems. I know that TAnn, CharlieD, bcbcbc, and some others have had problems with Alimta, and some of you haven't had many problems at like, like justakid. Would all of you that have used Alimta mind responding to this thread and share your experiences so I can print it and give it to the onc? If you can say what problems you had and when they started (after 1st infusion, 3rd infusion, etc), that would be very helpful. Thank you so much!! Peggy Quote Link to comment Share on other sites More sharing options...
tnmynatt Posted July 31, 2005 Share Posted July 31, 2005 Peggy, Charlie was very fatigued throughout his two months on Alimta. He also had a pretty severe rash all over him. Hope this helps. Quote Link to comment Share on other sites More sharing options...
CharlieD Posted July 31, 2005 Share Posted July 31, 2005 Peggy, My first 4 treatments of Alimta caused very few side effects. Had some fatigue, not as bad as Gemzar and Carboplatin, and it lasted only 2-3 days. A little SOB during that period also. No rash during the entire Alimta Regimen. Had mild acid reflux controlled effectively with Decadron. After the 5th and 6th treatment, fatigue and SOB became severe. Took two months to get rid of all side effects. At the beginning of treatment, my ONC said 4 treatments was the max she would recommend, but after 30% shrinkage after 4 treatments, she asked if I would consider 2 more. She warned me that the side effects would be more severe, but thought it was worth it. I agreed. No more benefit was realized after the last two treatments. Hope this helps. CharlieD Quote Link to comment Share on other sites More sharing options...
shineladysue Posted August 1, 2005 Share Posted August 1, 2005 Peggy, Mike had all of the following during and after Alimta. He received 6 treatments total. To this day, I believe it was the cause of all of these problems. My timeline isn't accurate, but close.. Fatigue- 4th day after treatment he became fatigued.. this is what usually happened throughout his course of treatment. About 4 days after he would become fatigued and then it would improve some within a week, but over time the fatigue was more extreme and lasted longer. He required his naps daily . Rash- Within a few days after the 2nd treatment he developed a rash across his chest and abdomen.. it was a fine rash and never really got worse. SOB- We began to notice shortness of breath after about the 2nd or third treatment , but the onc acted like it was to be expected after all the chemo he had had.... Well, it was after the 6th and final treatment he had fever and extreme shortness of breath. At first he was treated with antibiotics and then the scans showed a "ground glass diffusion"-pneumonits ..He had on 90% saturation resting and 80% walking.. they put him on oxygen 24/7, and high doses of prednisone for a 8 week step down course of treatment... starting at 60mg 1 week, 50 mg1week and 40 mg for 6 weeks after..... Shingles-The pneumonitis resolved after about 6 weeks into the treament, but his breathing was still not 100%.. it was discovered he had shingles... they said the cause was a weakened immune system from chemo and steroids.. they put him on Famvir.. it got rid of the shingles , but mentally he became very confused while on it and it has been an ongoing problem since , but appears to be improving... will be posting an update on him soon.. Peggy, I have no proof that Alimta caused any of these things, but I too have been observing the boards and some of these symptoms keep appearing over and over with Alimta patients. I've written about it many times. I believe in my heart there is a connection from Alimta to all that has happened with Mike. Hope this is somehow useful and I am sorry if I have upset or discouraged anyone... Just bear in mind that I have no proof and everyone reacts differently to chemo. Love and Prayers, Sue Quote Link to comment Share on other sites More sharing options...
TAnn Posted August 1, 2005 Share Posted August 1, 2005 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 Quote Link to comment Share on other sites More sharing options...
trishnmiller Posted August 2, 2005 Share Posted August 2, 2005 Jeffrey had only fatigue after the first 3 treatments but then experienced episodes of irritability bordering on rage. The symptoms are short lived however and better than strongeer chemos. He never had a rash but does have severe skin itching. He is getting a great response: major shrinkage in all tumors. We will stay the course. Trish Quote Link to comment Share on other sites More sharing options...
Treebywater Posted August 2, 2005 Share Posted August 2, 2005 Granted Mom had progression while on Alimta so it's hard to know what was the cancer and what was the treatment, but she had an AWFUL time with Alimta from the beginning. The 3rd or 4th day out each time she had 1-3 days of being TOTALLY out of it. Not comatose... but close. She could respond to us only if she absolutely had to. She had shortness of breath too. Was very fatigued and weak, etc. Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted August 2, 2005 Share Posted August 2, 2005 Peggy, My mom got really sick from Alimta. I'm talking coming from both ends for about 72 hours. The sickness usually started about 2 days after her treatment. Her first-line carbo/taxol did not do this at all, she did not get sick once while on that regimen. She did get the rash and it was irritating, but tolerable. Her liver values did something crazy aruond treatment 3, but have been fine ever since. She had a CT scan yesterday, so we will see what's up this week. Pray for shrinkage or stable! Quote Link to comment Share on other sites More sharing options...
bcbcbc Posted August 5, 2005 Share Posted August 5, 2005 Hi-- Afraid my experience with Alimta was too brief to be significant. I had my first Alimta treatment on JUN 28. Mild side effects--a little fatigue--mild nausea beginning 3/4 days after and lasting about a week. Mild rash mostly on arms. Chemo was halted due to an unrelated abscess infection on my butt--a huge PIA--literally and figuratively. Minor surgery. Antibiotics. Chemo recess still in process. Stable disease. Femur met now barely detectable. See profile for details. Best wishes to all bc Quote Link to comment Share on other sites More sharing options...
Guest ziggytwo Posted August 6, 2005 Share Posted August 6, 2005 My husband had his 3rd Alimta treatment with an infusion of Zometa on July 26th. We are definitely noticing a pattern settling in with the side effects. He feels fairly good for the firt 3-4 days then FATIGUE sets in and he becomes so IRRITABLE that he goes into rages sometimes. I try to step lightly but he simply can't control some of this. His rash comes on about one week after treatment. He puts Aloe Vera gel (Fruit of the Earth is best) on it and it stops the itching. He also experiences LOSS OF APPETITE. He knows he needs to eat but doesn't have any appetite. He tries really hard to eat whatever he can. By about 10 days after he starts to perk up, the irritability is still there but gets a little worse and he can eat more. By about 12 days afterward he starts getting hungry again! He has three more treatments to go since the results are very encouraging. The lymph node mets are completely dissolved and no bone mets are showing up either (could be too small) and the original tumor has shrunk even more than it did with radiation and the original chemo. So, we are going to stick it out for the next nine weeks. He has trouble sleeping more than an hour at a time and gets some anxiety also but these are minor. Hang in there -- Alimta seems to be working for a lot of people! Kathy! Quote Link to comment Share on other sites More sharing options...
jdjenkins Posted August 12, 2005 Share Posted August 12, 2005 My Dad has had two infusions of Alimta with Avastin. The combination seems to be working the tumor has shrunk and doc. wants to continue with treatments. He is very, very weak and has had problems with low blood pressure. He is not very hungry and has increased SOB. We were relieved to hear that the drugs are working, but I'm worried about how much more he can take. He is so weak right now. Denise Quote Link to comment Share on other sites More sharing options...
endangered but surviving Posted August 12, 2005 Share Posted August 12, 2005 Any time steroids or cortisone are given for side effects irritibilty can be a side effect, especially for men. Avastan cause low blood pressure, I had my fourth avastin on wednesday, my blood pressure is very low. I am increasing water intake. 8 glasses of water a day minimum can help to raise low blood pressure, monitor daily if you can, doctors are not always on top of these things. Check the "lung cancer in the news" site for heart related info all chemo patients need to know. Alimta certainly seems to cause more problems than drs talk about, I hope more users post alimta problems. joyce Quote Link to comment Share on other sites More sharing options...
Inkerdoodler Posted August 13, 2005 Share Posted August 13, 2005 Brand new to this forum and don't know how to list our "history" but hubby had significant side effects while on Alimta - severe fatigue, drop in BP (always cold, wrapped up in blankets) and low red cell count requiring transfusions of 2 units in 4/05 and 6/05 at which point they started Aranesp in conjunction w. chemo. He also experienced loss of appetite and "change in taste buds" so nothing tasted good. After 6 treatments DX more progression and increased fluid surrounding lung so we ended Alimta. He was initially DX 12/04 with NSCLC stage IIIB. Taxol&Carboplatin every 3 wks for 3 mos. then 6 wks. of daily radiation, then resume chemo till end of June (total 8 treatments). Tumor shrunk significantly and lymph nodes descreased. Persistent cough 7/04 led to DX of radiational pneumonitis treated w. steroids. 11/04 experienced severe edema while on cruise and on return was Dx w. recurrence. Started Alimta 1/05 every 3 wks. till 6/05. 6/05 switched to Taxotere. Quote Link to comment Share on other sites More sharing options...
tnmynatt Posted August 13, 2005 Share Posted August 13, 2005 Inkerdoodler, Welcome! To put your history in your signature, go to "profile" on the menu to the left. Good to see you. Take care. Quote Link to comment Share on other sites More sharing options...
alibass Posted August 24, 2005 Share Posted August 24, 2005 Thank y'all so much for the information - this post is a godsend. My husband had his second round of Alimta last Tuesday. Since he started, he has had pneumonia, detected blood clots in his lungs and has had major SOB. Extreme weakness and fatigue - he can get up, but can only walk a very short distance (like to kitchen) and then has to rest. He has had a dry cough, SOB, heartburn, hiccups, absolutely no appetite and has lost a great deal of weight in a short amount of time. We do not know yet if it is working. Have been freaking out (on the inside) wondering what is going on and this post provided a lot of answers. Thank you. Am wondering how everyone is still doing and if there are any changes? Also - I found a nutritional supplement called Scandishakes on the web and wondering if anyone has tried itt? They are like 600 calories per serving and believe they were originally developed for csytic fibrosis patients. Just curious. Quote Link to comment Share on other sites More sharing options...
Connie B Posted November 4, 2005 Share Posted November 4, 2005 I'm just bumping this up because of all the new members here that are asking questions about Alimta. I also wish to encourage the NEW MEMBERS to browse the NSCLC FORUM, and you will see a lot of info regarding Alimta. God Bless. Quote Link to comment Share on other sites More sharing options...
bcbcbc Posted November 4, 2005 Share Posted November 4, 2005 My earlier post was after the first treatment. Mild side effects. Then I had a second Alimta treatment. I was wiped out. Much worse than Gemzar/Carboplatin. Weak. Weak. Weak. Incredible fatigue. All this started 4 days after treatment. At the one week mark I checked into the hospital. I had severe pneumonia. It has taken a good 6 weeks to recover from this. Obviously I have discontinued Alimta. Now I'm on just Tarceva. Nasty rash on neck and face. Dryness of throat, mouth, skin. But I can deal with drinking water and using hand cream. Cancer seems to continue stable--no less--no more. Anybody have any feedback on the Tarceva rash? Mine occurred about 3 weeks into the 150 mg pill daily. It seems to be getting a little worse each day. Itchy neck and scalp. Does it keep getting worse? Does it taper off? Best to all... Quote Link to comment Share on other sites More sharing options...
Patkid Posted November 4, 2005 Share Posted November 4, 2005 Thank you, thank you, thank you, Connie. This helps me a lot!! Now I remember seeing this before, but did not remember till now. No wonder Bri is so sick and he is on Sandostatin, too! P Quote Link to comment Share on other sites More sharing options...
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