StrahDawg
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Posts posted by StrahDawg
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Thank you all for the support as always and I will keep you posted on the results. I have my appointment on Tuesday for the gamma knife procedure. Yesterday I spoke to the doctors and they were all very optimistic so I do feel a little better.
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Hello everyone it's 90 day's and check up time again. Last time I posted they wanted to do a brain mri and well not good news. I have about 4 or 5 lesions on the brain and going back tomorrow for gamma knife. Everything else chest, abdomen and pelvis still NED. Also Last time I posted I did not mention that my Doc. said he thought it was ok to take a break from the xalkori which I did and now this. He doesn't believe that stopping had anything to do with the met's because supposedly there's no evidence that xalkori can prevent spread through the blood brain barrier? Anyone else have this happen with xalkori or have the gamma knife done? He is still very optimistic about my treatment but it's so frustrating sometimes that when you start feeling good and normal again that we have to have these set backs. Anyway that's my little sob story and I guess it's back to work in kicking this monsters you know what!!!
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Well it's been awhile since I've been on here and not sure if that's a good or bad thing. Today was my 90 day check up and I just wanted to say NED! I've been on the crizotinib now going on a little over a year and a half. The drug for me has been very tolerable other than mild fatigue and the swelling mainly in my feet and hands. My Onc prescribed lasix and that controls it pretty good. The other reason I'm posting is that in 90 day's at my next scan he want's to add a brain mri to my list of scan's. He mentioned that it's only precautionary and that there has been some evidence that the crizotinib doesn't prevent spread to the brain and that there's some new and better drug's that might help me. I know it's a good thing that he's pro-active but I've been feeling so well and active that it freaked me out a little. I trust my Onc but today I kind of went in with the attitude of trying to get the dose lowered and instead got more test's and the feeling of uncertainty/confidence that the crizotinib is going to continue to work.
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Finally some good news for a change the scans came back good. I'm not sure if NED is the proper term for this time but my Doc. said none of the spots on my back or pelvis lit up on the PET scan. He was very happy and said we would scan again in 90 days. The crizotinib has been great to be on other than I have to have a little breakfast before I take it.
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I just wanted to give an update on the xalkori. It's been almost one month and as far as side effects theres basically none. At night or in low light situations I get a little of the flashing light traces but during the day nothing. In the morning I make sure to eat a light breakfast about an hour before taking my first pill as it helps with the mild nautia. Other than that I can't complain about anything. My back pain has been slowly going away so I hope that this means the drug is working. I get scanned again in a few weeks and I will post the results.
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Thank you for the info I called my Onc. today to get started. He said they mail the drug so i should get it sometime next week.
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Thanks Katie and reading Kurt's story is so much what I needed to hear.
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Thanks Katie and thanks again for your dedication and all that you do. As far as testing my tumor the reason my doctor gave me and hopefully I'm understanding it correctly was at the time they were getting ready to start a clinical trial at the Cleveland Clinic and this crizotinib only works with certain lung cancers (adenocarcinoma) and you have to have I believe it's called the ALK gene. Well anyway I had that and he said the crizotinib worked and I qualified for the trial. At the time I said I didn't want to participate because I wasn't having any problems and there was nothing for them to compare which he agreed. I think I'm leaning toward starting the crizotinib but I was hoping to get some opinions on how it's worked and the real side effects people are dealing with.
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Well it's been a few years but unfortunately I am back and hoping to get a little feed back on my next step. Last month at my check up I found out that my met in my lower back was active again and we needed to do 10 days of radiation. I've since completed the radiation but the Doc. also wanted a PET scan done. Upon further review my other met in my pelvis also showed some uptake. His recommendation now is either trying the alimta again once every 3 weeks along with zometa every other treatment or a fairly new drug that I'm finding out is pretty incredible called crizotinib. What I want to know from you my fellow experts who have to go thru this hell is this crizotinib as effective and easy to handle as they say? Also and I thought this was kind of odd but my Doc. said he sent my tumor out almost a year ago and that the crizotinib worked on it. Do they normally do this?
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Best of luck and prayers for just inflammation.
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Sorry folks it's been awhile since I've updated. Basicly things have been going good I still go every 3 weeks for the Alimta and every 6 weeks for a zometa treatment. My last scans showed no change other than the one lymph node they were watching shrunk! I feel good other than a couple days after treatment I'm just whiped out for a day or two and than poof I'm like back to normal. It's really weird but if that's what I have to deal with so be it.
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Patti, Long time no see/chat myself well I am so happy to hear no progression, that is awesome. As far as that stupid bone met it is what it is and hopefully the zometa will do it's job.
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Great news and congrats!
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Went yesterday for my 3 month ct scan and according to the nurse practitioner chest/pelvis were clear and the spots on my lower spine showed no change. So i feel pretty good, again it's unofficial because the radiologist hasn't ok'd them but she felt confident in her opinion. The alimta treatments have been going pretty well with minimum side effects I go once every 3 weeks and have had no hair loss and a little fatigue for about 2 days and than I'm pretty much back to normal. I also have been receiving the zometa treatments every 6 weeks and that has been pretty tolerable as well, my back does hurt still a little but over the counter aleve once a day has been doing the trick.
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Sandra many positive thoughts and prayers for confirmed good news.
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Great news and congrats!!!
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Great news and congrats! Also congrats on the Phillies win I was rooting for them because I always liked Charlie when he was here in Cleveland, he was very good with the players.
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Sandra I'm sorry to hear of the news but it sounds like a good thing that there giving the Tarceva some more time and it's also great to hear you have your game face back on. Keep the faith and have a great time with the kid's I know that's what I''ll be doing I'm very excited it's my daughter's first halloween and she's going as a monkey, we put the costume on her last night and I coudn't stop laughing she was so cute.
Best of luck and many positive thoughts and prayers,
Steve
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Sandra,
I feel very bad about what your going thru and I just wanted to say I said an extra prayer just for you and your family today, I hope it helps.
Steve
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I am very sorry to hear of your news and having to go down this road again. It sounds like your husband has a great attitude in taking on this disease. I am a 3 1/2 year survivor and I believe attitude does play a big role in our survival. Tell Tom to keep kicking butt!
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Great post when can I start treatments?
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Best of luck for good results on the mri. Many positve thoughts and prayers!
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Thanks everyone for the welcome back and thanks NED for the link to info about alimta. It looks like I have alot of reading to do.
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Well it's been a few months since I posted and for the most part things have been great. Since the last time I posted I was wrapping up my son's baseball season and getting ready for his football season to start and I just had my check up from the bone met on my lower spine which came back good news no change. Since my last post I have felt great other than still having some lower back pain which Doc. said was a combination of the cancer damage, radiation and zometa. I have been controlling the pain with aleve and tylenol with good results. This past Wednesday I went in for my 90 day follow up which was a pet and ct scan, my chest abdomen were clear, the spot on my spine again showed no change, but now I have another 2-3cm. spot on my pelvis. I can't flippin believe it, so Doc. gave me a choice wait 90 days and re-scan or start alimta once a month for 90 days and re-scan. My wife and I decided to start the treatment, I'm still stumped why he gave me a choice and honestly I think I was in so much shock with the news that I didn't ask what do you mean wait 90 days? It just seems weird if this is a second met why wait to treat obviously after almost 4 years something stirred the pot and got this going again. I have heard and read alot of good things about alimta any other comments you have please let me know, remember i'm a chemo rookie again also did I mention that cancer flippin sucks! Thanks for listening.
Steve
For ALK: "FDA Grants Genentech’s Alecensa® (Alectinib) Accelerated Approval for People with a Specific Type of Lung Cancer "
in ALK +
Posted
Wow it's been a long time since I've been on. I guess that's a good thing. Anyway I've been on crizotinib for about 4 years (maybe a little longer) and it looks like I may be building up the resistance. About 2 years ago I had 5 lesions 1-3mm found in the brain and was treated successfully with gamma knife. Last year in October I had 2 more pop up, again 1-3mm in size and treated with gamma knife. I just had my mri on Monday and they found one lesion about 2 mm in size and planning gamma knife in a few weeks. My question is that my doctor called and wants me to come in and talk about switching to alectinib and I was wondering if anyone else has gone through something similar and how they're tolerating this drug? Also I just want to add that this came as a big surprise to me because of how good I've been doing. I'm 46 years old, very active and go to the gym about 4-5 times a week. I've actually been pressing my doctor about giving me a break from the crizotinib and now this! I know I should be thanking my lucky stars for making it this long and I know they're still very optimistic about the future results but it's just so disappointing some times!
PS: To the moderators if this is in the wrong place I apologize and please feel free to move it to where it may get some responses. Thanks!