sallys Posted January 15, 2008 Share Posted January 15, 2008 Right now I am scared and not sure what to do??? My last Alimta chemo treatment went very bad. Each day after I kept getting sicker and sicker, couldn’t get out of bed, my neuropathy excellerated in my feet and legs until they have been so painful. I saw my pain doc and her first words were…”my God you look awful, what happened?” I didn’t know that I looked that bad but my husband said I did. I could hardly walk, my BP was way down 60/40 and I had lost more weight, running the low temp again l00.3 to 101.2, sweats, waking up in wet pajamas every morning. Scheduled an endoscopy upper and the doc couldn’t do until he got my BP up.It was scheduled for 10 a..m. and didn’t get completed until 3 p.m. when it should have been over and done in 20 min. But the BP being so low he said I could die on the table while he was doing the scope. Because of the low BP Dr. Scott also proceded with a lower endoscopy….this all was being done because of the vomiting and nausea I was having daily. I do not have any obstruction or blockage which is great, great!!!! news. But I do have a very slow bowel moving problem which the food does not move on down and thus the full feeling all the time and the nausea (said this could be caused from the surgery over a year ago???). I am now on a medication metroproclan, which I take 30 min. before each meal. This helps considerably…at least I am not vomiting, still some nausea and fullness but in time hope this clears up completely. I do however feel the Alimta has caused 99% of my problems, weakness, tiredness (low BP), and worsened neuropathy. I fear another treatment with this drug and there just might not be any more Sally! So I plan to tell my doctor tomorrow that I don’t want another treatment with this because of my fears and hear what he has to say. Perhaps another rest from chemo is what I need as I am still not in good shape. Thus no updates on my history for all. Though I have it together I have no one to put it on line for me but I will get there when I get to feeling better. Has anyone else gone through all of this with Alimta? I know some have had good results with it and others perhaps not. It still is hard to walk but my BP is returning back to its normal high so am back on my BP medication. My mind is also very confused. I am also having to give serious thought to a port as my veins are just not cooperating anymore for blood tests or any other test that calls for the needle. It took them a good hour of jabbing and digging the last treatment. My hemoglobin is low, rbc low, white a little high. Have been given an injection last time for the low hemoglobin. All in all I feel downright sick. It is scary as to what one should do here, esp. since my cancer is growing again. I know you can’t advise me what to do but can you let me know if you have had Alimta and if anyone has ever suffered like this with it? Quote Link to comment Share on other sites More sharing options...
Muriel Posted January 15, 2008 Share Posted January 15, 2008 Sally, that's really scary. Those are the kind of side effects that I would have called my Onc.s office about ASAP. Often, they can give you something to ease the discomfort/pain/etc. Did anyone consider the nausea and vomiting as being caused by the chemo? I hope you find a way to continue treatment without those awful side effects. Muriel Quote Link to comment Share on other sites More sharing options...
Kasey Posted January 15, 2008 Share Posted January 15, 2008 Sally, Do a search with the author stand4hope and the key word alimta. Scroll to around July of '05 and read what she has posted on alimta. Not sure anything will be of any help or not, but probably should be read. Good luck. Sorry about your status right now. I'm hoping for major improvemen soon. Kasey Quote Link to comment Share on other sites More sharing options...
sallys Posted January 16, 2008 Author Share Posted January 16, 2008 Thanks Muriel and Kasey. I did contact my onc and Curt talked to the nurse. They were supposed to get back to us but never did. Guess he is blaming everything on the slow bowel. Seems like my docs are all pushing the blame off on to something else. My internist didn't want to see me said I needed to see my onc, Dr. Scott supposedly sent my reports to my onc and he was supposed to contact me but???? I thought I had the best of the best here but now am having my doubts. I tried to find the stand4hope site and did but didn't find anything listed on it esp. any dates. So I must be doing something wrong there. Any suggestions? I am trying to stand strong here but my hubby is scared and so am I. He is a great support to me and is worried sick. Quote Link to comment Share on other sites More sharing options...
Kasey Posted January 16, 2008 Share Posted January 16, 2008 Sally.......click on Search that you find in the purple above. Then when asked for key words on that screen put in alimta. Then for author ~ put in stands4hope, then click in the circle where it says posts and then hit search. There should be posts come up. I found alimta info from July '05 through August and Sept. I think. Try again. You should find info. Kasey Quote Link to comment Share on other sites More sharing options...
Ry Posted January 16, 2008 Share Posted January 16, 2008 Alimta can be very hard on you. It was hard on my husband and several others here. My husband had a very hard time getting through it and had to ask for a break. I would hope they would switch you to something different -- ask about Avastin. Quote Link to comment Share on other sites More sharing options...
Patti B Posted January 16, 2008 Share Posted January 16, 2008 Oh, Sally - I am so sorry to hear you are having these problems. I have been on Alimta for several months now, and even though its not the cake walk that Avastin was, I guess I am very fortunate that I have not had any of the problems you are having. I am more tired and SOB with Alimta and those are major side effects of it. I am beginning to get the tingling and "falling asleep" of my hands which I see is also a side effect of Alimta. I did have one experience with nauseau and vomiting just a little after my second cycle of it - but the new doc had changed my anti-naseau pre-med. Once I went back on the Kytril I have been OK ever since. You can always go on chemocare.com and read about side effects of Alimta. Or you can get the advice of Dr. West on onctalk.com. Maybe he has some insight into whether this is really chemo-related or not. I will keep you in my prayers and please keep us posted. I hope things turn around for the best very soon. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
sallys Posted January 20, 2008 Author Share Posted January 20, 2008 I saw my onocologist yesterday. I told him no more Alimta. He is a little in denial that Alimta can cause all these side effects but he did agree that maybe my body could use a rest from treatment. So I have 6 weeks off. But he does not want me to do any of my herbal alternatives which I don’t like. But I will do what he says. Anyway I am feeling much better the longer I go without all. I ask him if my tumor was fast growing or if it could spread if I go without treatment. He doesn't have an answer, dumb question duhhh! The upper GI was done and my BP was so low, they couldn’t keep it up to 90, so it took all day. Then they decided to do a lower GI and found that I have a very slow bowel movement and thus the full feeling because things are just not going on down. Now I have a new med Metopropram and it is working wonders. No more constipation and the food moves on down, still have to watch all I eat but eating more; nausea is better tho still some in the mornings, no vomiting. So I am feeling much better, beginning to regain strength and doing the washing and folding clothes again, polished some furniture, now if it would just warm up so I can get back to my walking and really rebuild my strength back up. My next pet scan will be in March. Doc said that if Alimta blasted my body so badly then just maybe it did the same to the tumor…wouldn’t that be great news!!! It feels so good not to feel so sick, like a miracle! I have never seen anything on Connie B’s surgery….Is she okay? Hugs and prayers for you all…..Sally Quote Link to comment Share on other sites More sharing options...
LovesLife Posted January 20, 2008 Share Posted January 20, 2008 Sally - so happy to hear that you are feeling better! Wishing you a great result on your PET scan in March. Connie had a tough time after surgery, but is home now recuperating. Others who have known her longer may be able to fill you in on more details; but thankfully, she is doing fine. I think Katie B posted most results from day of surgery on, so perhaps check under her profile to find the updates. Hope that helps. Linda Quote Link to comment Share on other sites More sharing options...
recce101 Posted January 20, 2008 Share Posted January 20, 2008 Sally, I'm so VERY glad you're feeling better. I haven't had Alimta, but from what I keep reading, the range of effects it has on people is a lot more variable than anything else I know about, even Toxic Taxol. Let's hope it really blasted the tumor as your onc suggested. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Don M Posted January 20, 2008 Share Posted January 20, 2008 I am glad you are feeling better Sally. Hopefully now that you have the gastric problem under control, you could finish chemo if you want to. I am not sure, but it may be that you have had 3 rounds of alimta. Maybe that is enough. I had 4 rounds of alimta in 2006. I did not have too much of a problem with it, but it did nothing to slow down my tumor. Maybe there is something to the idea that it gave you a benefit in terms of whacking the tumor since it whacked your body too. Anyway, I hope you got some benefit from it. Don M Quote Link to comment Share on other sites More sharing options...
Connie B Posted January 21, 2008 Share Posted January 21, 2008 I'm here Sally, and I'm watching what is going on with you my friend. Your ALWAYS in my thoughts and prayers. I sent you a PM. Stay strong and just take a little break and build up your strength and go head first and kick this cancer's butt! Quote Link to comment Share on other sites More sharing options...
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