bcbcbc Posted September 30, 2005 Share Posted September 30, 2005 HI to all-- I just updated my profile to current status. So if you're interested you can check it out. After 5 cycles of Gemzar/carboplatin and some radiation I had my first Alimta treatment at end of June. I had a seemingly unrelated infection shortly after that so further Alimta was on hold until recently (Sep 13) when I received the 2nd cycle. Four days later I was knocked out with nausea, weakness, extreme SOB. Admitted to hospital with pneumonia on 9/21. Released on 9/28 after 7 days of IV antibiotics. Still weak. Still very SOB. I don't understand the extreme SOB. My counts are normal. My blood oxygen is near normal--93%. There has been no significant change in the pleural effusion. The pneumonia seems to be mostly gone. Has anyone else experienced otherwise inexplicable extreme SOB as a side effect of Alimta? It's beginning to look like Alimta is not for me. Would appreciate any informed feedback. Quote Link to comment Share on other sites More sharing options...
SBeth Posted September 30, 2005 Share Posted September 30, 2005 Hi BC, My husband has his first, and only, round of Alimta on August 23rd. He began experience severe shortness of breath about 10 days later and it has been a constant problem since. His blood oxygen levels are also above 92% and the oncologist has no explanation other than to tell us it "could" be the progression of the disease. Sorry I don't have any more information for you, but I do hope that your SOB eases up as I know it can be very scary. Prayers, Quote Link to comment Share on other sites More sharing options...
Kasey Posted September 30, 2005 Share Posted September 30, 2005 bc, Sorry about the troubles you have experienced over the summer until the present . Also sorry to read your updated profile. Hope that doesn't mean you are not looking for a treatment plan that will work! Will be watching for further update! Kasey Quote Link to comment Share on other sites More sharing options...
CharlieD Posted September 30, 2005 Share Posted September 30, 2005 Hey BC Glad to see you back but sorry to hear about the problems with Alimta. As you can see by my BIO, I had 6 Alimta treatments with some success after the 4th one. Your side effects are identical to what I had. It is definitely the Alimta that caused my SOB and probably yours too. It took a good 2 months of being off it to get rid of the SOB. I've got some SOB now, but it doesn't restrict my activities. I walk 2 miles every day, mow the lawn, play golf and go fishing often. If the Alimta isn't for you, I hope the Doc will come up with an alternate plan. Let us know. If I can provide any more info, don't hesitate to ask. Pulling for ya my friend. 'Good Luck. CharlieD Quote Link to comment Share on other sites More sharing options...
TAnn Posted September 30, 2005 Share Posted September 30, 2005 Hi BC, I've just had my 4th Alimta treatment. The first treatment I had an extremely bad rash, not sure if it was the Alimta or the combination of pain meds I was on. The second treatment I started running a fever and spent 6 days in the hospital, pneumonia. The third treatment went really well, just some mild nausea, muscle aches and weakness for the first 6-7 days and then just fatigued after that. So far the fourth one is treating me the same as the third. SOB is not a problem for me. I know Peggy's husband Don was on Alimta and experienced alot of SOB, turns out the chemo damaged his aveoli in his lungs. Talk to your doctor about this. Hope they can find another treatment for you very soon. TAnn Quote Link to comment Share on other sites More sharing options...
Connie B Posted September 30, 2005 Share Posted September 30, 2005 I attended a seminar at the U of MN two weekends ago about Living after cancer. One of the things that was mentioned that they say they are following is what Chemo does to the heart once you complete treatments. They stated that heart problems did accure in cancer patients after chemo. So, my thought would be with the SOB, could it be heart related? As if we don't have enough to deal with and worry about regarding side effects from Meds! Could it be radiation pneumonitis? That will cause SOB! Good luck I sure hope this all works out for you. Quote Link to comment Share on other sites More sharing options...
stand4hope Posted September 30, 2005 Share Posted September 30, 2005 Dear bc, First of all, thank you TAnn for posting what the Alimta did to Don. I didn't know whether to post aobut it because I didn't want to scare you, bc. My husband never had any SOB for any reason until Alimta. It started after the 2nd infusion. After the 3rd infusion, he was hospitalized for tests to determine the cause of the SOB. A CT scan revealed the alveoli damage, so I would suggest you tell your onc about this ASAP and get a CT scan before you get another infusion. After my husband's 3rd infusion, the damage was so extensive that there was no chance of recovery. An open lung biopsy was done and two sections of his good lung were taken. Two opinions on the biopsy report said the same thing: severe alveoli damage most likely caused by chemotherapy. BC, please, please get a CT before you get another infusion. The reaction is very rare, but can be deadly. Many other have done really well with Alimta - like Trisha's husband. Love, Peggy Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted September 30, 2005 Share Posted September 30, 2005 And then my mom was the odd ball, she had no SOB, never has, still doesn't.. She just got very sick as far coming out both ends for several days after her treatments. She had 6 treatments and it has held her stable (except for the brain stuff) for months. I hope you can find the right combo soon. Take care... Quote Link to comment Share on other sites More sharing options...
Patkid Posted October 1, 2005 Share Posted October 1, 2005 We would like to offer concern and support. All the best for a good plan, BC. Pat and Brian Quote Link to comment Share on other sites More sharing options...
tnmynatt Posted October 1, 2005 Share Posted October 1, 2005 Charlie was just tired from the Alimta treatments. Never had other side-effects. I recommend you get further evaluation as previously suggested. Take care. Quote Link to comment Share on other sites More sharing options...
shineladysue Posted October 1, 2005 Share Posted October 1, 2005 Bc, I don't like to post negative things, but my husband, definitely developed pneumonitis when he was on Alimta. He had good results as far as some shrinkage and then stability, but his breathing was progressively affected from early on. Even when he started having the pneumonitis , the pulmnologist thought it was a bacterial infection and gave him an antibiotic. His breathing was gradually worsening and then it became very bad almost over night. It was the CT scan that showed it as a ground glass pattern on the lung. High doses of prednisone are given for it , as well as using oxygen . The prednisone cleared the pneumonitis, but he was left not being able to breathe as well as he had before. I hope this isn't what is happening with you , but it is treatable and it is good to be aware that it can happen. Sure hope you get answers. Sue Quote Link to comment Share on other sites More sharing options...
Leslie221 Posted October 1, 2005 Share Posted October 1, 2005 bc, I don't have any experience with Alimta, but just wanted to say it was good to hear from you and I'm sorry you're having a rough time. Hope things improve for you soon. Sending all caring thoughts and strength your way, Leslie Quote Link to comment Share on other sites More sharing options...
bunny Posted October 3, 2005 Share Posted October 3, 2005 bc, no useful information for you re: the drugs, but I just wanted to add my voice to the support expressed here for you. my mom just came through a round of pneumonia and it was the pits for her, so I am very glad to hear that seems to be resolving. please let us know if there's anything we can do to support you. xoxo bunny (from Queens, the new Brooklyn ) Quote Link to comment Share on other sites More sharing options...
Darlene Posted October 3, 2005 Share Posted October 3, 2005 I don't have any words of wisdom concerning Alitma but I really appreciate all the responces as my husband has had SOB and other concerns that I didn't realize could be from the chemo. Also CONNIE I would like more info on heart problems with chemo if you have any... Quote Link to comment Share on other sites More sharing options...
pammie Posted October 4, 2005 Share Posted October 4, 2005 Sounds like you are having a tough time BC. Will continue to pray that you will respond well to the Alimta. pammie Quote Link to comment Share on other sites More sharing options...
Fay A. Posted October 4, 2005 Share Posted October 4, 2005 No experience with Alimta, bc, but wanted to thank you for letting us know how you're doing. Wishing you well, figuratively and literally. Quote Link to comment Share on other sites More sharing options...
bcbcbc Posted October 12, 2005 Author Share Posted October 12, 2005 Thanks to all for the feedback, greetings, good wishes, etc. I think I'm feeling somewhat better after the TKO by Alimta. My onc and I concluded that I cannot tolerate Alimta. That's for sure. So now it's one pill a day of Tarceva. We'll see how this works. Here's hoping for good juju for all of us... Quote Link to comment Share on other sites More sharing options...
Kasey Posted October 12, 2005 Share Posted October 12, 2005 bc, Best of luck with Tarceva. Lots have been getting good results. Hope you are one. Also hope you start to feeling better and get rid of that pesty pneumonia once and for all! Please come back and keep us updated. We wonder when you disappear for long periods of time, you know? Kasey Quote Link to comment Share on other sites More sharing options...
Fay A. Posted October 12, 2005 Share Posted October 12, 2005 bc, I am sitting here with my fingers and toes and every other movable body part crossed that Tarceva works it's magic on you. And I'm really glad to know you are feeling a little better. Sometimes even just a little bit better can make the difference between wanting to keep on trucking and not. Hang in there... Quote Link to comment Share on other sites More sharing options...
bunny Posted October 12, 2005 Share Posted October 12, 2005 I'm so happy you're feeling better, bc. my mom just started Tarceva, too. hope it does the trick. xoxo bunny Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted October 12, 2005 Share Posted October 12, 2005 bc,hoping the tarceva will treat you better than the Alimta did.Also wishing you good results with it. Quote Link to comment Share on other sites More sharing options...
Don M Posted October 12, 2005 Share Posted October 12, 2005 BC: I hope the tarceva brings you good results. Don M Quote Link to comment Share on other sites More sharing options...
shineladysue Posted October 13, 2005 Share Posted October 13, 2005 BC, Good luck with the Tarceva. It is helping many. Keep in touch and let us know how you are doing. Sue Quote Link to comment Share on other sites More sharing options...
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