Jeannie0613 Posted May 19, 2008 Share Posted May 19, 2008 Hello everyone. It has been awhile since I have posted but I continue to follow up on everyone. I learn so much from this site and I thank you all. We are still going through so much but for the most part everything has been on the up with Jim. He has been having chemo once a week(texotere and carbolatine) since January. He also had the 6 treatments of methotrexate for the menengial carcinomatous. Which, by the way they say is now gone(no signs of it). THANK GOD! He was eating really good, huge appetite in fact, and never got ill from the chemo. They originally started with this chemo once a week(small dose) because he was so weak and unable to keep anything down at that time. Now, the oncologist says he is going to continue the once a week treatments since they seem to be working and he is tolerating them beautifully. A recent full body MRI showed the spot on the lung has decreased in size, the tumors in the brain have shrunk and are no longer a concern. My concern today is....they have been weanning him off the steroids which over the last couple days he has thrown up, and his vision is so bad. His EYES are driving him crazy. They are red, irritated, dry. Nothing seems to help. We have been putting drops in, taping them up, tried patches everything and nothing is helping. He can't even look at me for long his eyes just start kinda rolling. It is so scary. Anyone ever experience anything like this? I also have another concern.......the doc did tells us chemo is going to continue long into our future, my question.....when is it to much? I just worry that he is having this every week and now I see things such as his eyes, now appetitie. Is his body saying this is enough? I just don't know what is happening and I never seem to be able to get these questions answered from our doc. Since I last wrote, Jim has also been going to physical therapy three times a week too. He is now walking with a little help from his cane. No more wheelchair and very limited use of his walker. That alone is a miracle. He was unable to walk. Everyday he was getting stronger. Well, up until these last couple of days. I feel like the chemo is taking its toll now or could it be the steroids? He is only taking 1 mg a day now. I don't know. Anyone have any advise for me. Just over the last couple days, his vision, his appetitie, and his energy level has all changed. I am worried. I will try to update our profile later on. So much has been going on but mostly good and I want you all to know about everything. Thank you! Quote Link to comment Share on other sites More sharing options...
shineladysue Posted May 19, 2008 Share Posted May 19, 2008 Jeannie, I hesitate to advise anyone on what to do because I really don't know that answers, but if it was me I would contact the doctor immediately. I've never heard of those reactions and they sound like very negative side effects that may require an injection or something to reverse them. This doesn't sound like anything I have ever heard of before and it sounds potentially serious. Let us know how he is. Sue Quote Link to comment Share on other sites More sharing options...
Jeannie0613 Posted May 19, 2008 Author Share Posted May 19, 2008 I called. The nurse said she would give the doc a message but otherwise he will take a look at him when we come in on Wednesday for chemo. I just feel brushed off lately when I call. It is so irritating. Thanks I will keep my close eye on him and if I have to we will go to ER. Quote Link to comment Share on other sites More sharing options...
peebygeeby Posted May 19, 2008 Share Posted May 19, 2008 Hi Jeannie, I have no idea what could be happening, I just want to wish you and Jim well. I hope everything turns out alright. Read your profile, and it sounds as though otherwise, things are going well. May it continue to be that way. All the best, Gail Quote Link to comment Share on other sites More sharing options...
recce101 Posted May 19, 2008 Share Posted May 19, 2008 Hi, Jeannie: Please check the discussions here: http://onctalk.com/bbPress/topic.php?id=344 I was one of the contributors to that topic thread, since I had considerable problems with vision while on Taxol. According to Dr. West's posts in that thread, the vision side effects of Taxotere can be even more than what I experienced. I don't know whether steroids, or the tapering off from steroids, can cause vision problems, but I wouldn't be surprised. If you post a question for Dr. West today, there's a possibility he might answer tonight (he posts a lot of answers from home after work). You can use the new cancergrace.org site and ask your question in the forums section. Most of us register with the same usernames there as here so we can recognize each other. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Jeannie0613 Posted May 19, 2008 Author Share Posted May 19, 2008 Gail I was reading your post as well....how is his breathing today. Gosh, I worry so much about everyone. Please tell me he is doing better. Quote Link to comment Share on other sites More sharing options...
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