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meredith

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Posts posted by meredith

    3 month scans

    in NSCLC GROUP

    Posted

    Scan time can be so difficult. On one hand, you WANT them to monitor for possisble recurrence, but on the other hand, you don't want to hear anything about recurrence.

    I'm hoping that you have great results!

    Is Neuropathy Permanent?

    in LC SURVIVORS

    Posted

    Hey Darrell!

    I have neuropathy as well. As far as how long it may last, it depends on the person and "degree" of it. I've got it pretty bad, so bad that for about a month I was using a walker to get around (although some of that was related to fatigue). Mine started in the toes and tips of fingers only as I was getting chemo; it was AFTER all the chemo that it started moving up my calves and hands, which is not that unusual I was told.

    Although I still have pain and numbness (mostly in the legs), I am walking just fine now. However, I can't run, or I'll fall flat on my face! Sometimes, I'll simply fall down because my legs seem to buckle underneath me. I also have balance problems, especially if I close my eyes or if it's dark. But it is MUCH better than it was.

    So, it's hard to give you an exact answer because everyone is so different. :? It sucks, I know, but even if it does get worse for a bit, it will probably get better with time.

    And unfortunately, there is no cure for the condition, but there are medicines that can help with the symptoms--Neurontin, anti-depressants, pain meds, etc, can all be of help. My doctor even prescribed quinine (yes, the malaria medication!), which is supposed to help with leg cramping (though it didn't help me much).

    Hope it's not too troublesome for you! And if it is, try not to be too bummed out about it, as for the vast majority of people it gets better. :lol:

    I have a constant ache...

    in CAREGIVER RESOURCE CENTER

    Posted

    You go ahead and vent all you want! My mom was/is my caregiver during my sickest moments (I love her for that, and for many things) and she did a great job, but I could tell it was hard on her, physically and emotionally.

    It's weird you mention the heart thing, because I had the same problem during infusions. My heart rate (and blood pressure) would skyrocket. I think it was a combination of nerves and toxic chemotherapy. I had 2 EKG thingies and both were 'normal,' but I take Atenolol to regulate my heart rate. So, they really don't know why it gets like that with me (mine also would get up in the 130's and 140's!), but they certainly don't want it that high.

    Hang in there!

    Back from the U of Chicago

    in CAREGIVER RESOURCE CENTER

    Posted

    I hope they can give you some direction. If you call them, let us know what they say.

    I'm still looking. This isn't hopeless; I just KNOW that there are treatments out there for Keith, especially since he is willing to fight.

    Shame on those doctors you saw for telling him he has nothing left to fight with. How dare they try to assume what he's made of?!

    Great News

    in NSCLC GROUP

    Posted

    Hi Lorrie,

    Yes, I did read "Marley and Me" and it was very good! And also very funny, especially since I have had similar experiences with Ed, particularly with the chewing. Fortunately, Ed had outgrown that stage and is a great dog--so sweet, good with children and generally well behaved. He's been so great, too, in helping me through cancer just by being there. A lot of times if I've been crying, he will make these whining noises and then come lick my face!

    I kind of spoil him--he gets just about whatever he wants :lol:

    Chemo Side Effect ?

    in NSCLC GROUP

    Posted

    This sounds quite a bit like Neuropathy, which is a fairly common, though unpleasant side effect of many chemotherapy drugs. Taxol and the platinum drugs are known to cause it.

    I have neuropathy from high doses of cisplatin, which started as numbess in fingers and toes and then gradually moved up my calves and hands. I also have pain. Fortunately, it tends to improve for most people I think, even if it gets worse for a bit.

    I would ask the doctor for sure. There are medications that can help with the symptoms if they are very bothersome for you.

    Back from the U of Chicago

    in CAREGIVER RESOURCE CENTER

    Posted

    Carleen, I am so sorry. I am going to do some research for you; in fact, I've already started.

    Maybe you have already heard of this place at Cedars-Sinai in Southern California? It's the Carcinoid and Neuroendocrine Tumor Center It's for rare neuroendocrine tumors like Keith has and they specialize in treating them. They may have much more information on current treatments and/or clinical trials.

    Please let me know if there is anything I can do. I would be more than happy to call them and get information for you if you want me to do that.

    Don't give up. I am hoping for the best for you and Keith.

    Good Test Results!

    in MEMBER UPDATES

    Posted

    I love NED, and am wanting to start a very long term love affair with "him!" :lol:

    I am just so very relieved. Summer is just starting, and I am so glad that I can look forward to a summer of no treatment. Last summer, I was so sick that it was hard to do anything adventurous and fun. This summer will be so different and I'm very excited!

    A rather weird thing that happened on early Monday morning(around 4:00 am)just 7 hours before my scans. I woke up and had this feeling of calm and peace--I wasn't that scared and for a couple of hours felt that everything was going to be OK. It didn't last all morning of course; I was certainly nervous all day. But that feeling was there and I had never experienced that before a scan in the past....

    Good News!

    in SCLC GROUP

    Posted

    Great news!!!!! :D

    I have small cell cancer of the cervix, which "behaves" like small cell lung cancer, and I just had scans Monday after a 5 month wait. So, I wouldn't worry too much about scans in 6 months, as they probably feel confident that your mom is alright to wait that long.

    Again, so happy to hear your good news!

    my mom has just recently been diagnosed with non small cell

    in INTRODUCE YOURSELF!

    Posted

    I'm sorry about your mother. However, do not listen to grim statistics. None of my doctors ever told me how much time I had, but in the research I did, I saw that women with my type of cancer at my stage live an average of 10-14 months! Well, I'm already close to 16 months out with no evidence of cancer.

    No, and I mean NO doctor can truly predict how long someone will live after a cancer diagnosis. They make guesses, but that's all.

    Do not despair, even with late stage cancer. There are treatments that WORK and there are ALWAYS survivors. DO research, and get with some oncologists who are willing to help your mother fight this beast.

    Best wishes

    Meredith

    Diagnosis NSCLC Stage IIIA

    in NSCLC GROUP

    Posted

    Hi,

    I know how you feel with everyone asking "How do you feel?" Mostly people have good intentions, and I think they want to hear "I feel fine." But often want you really want to say is "I feel like crap and cancer sucks and I'm depressed!"

    Although it's hard, there are days when I feel like I've put the cancer, treatment (and its consequences) behind me, but then someone will bring it up and everything comes flooding back. Then I get kind of angry and tell people not to keep bringing it up because the things I do in my life doesn't always have to revolve around cancer.

    You hang in there, girl! Like everyone has said, you are going to have bad days. Some days you will be sad and depressed and other days you might feel very lonely and afraid. But you are going to continue living and have "normal" days with good times.

    Your entire world often falls apart upon hearing "cancer", but you pick up the pieces and build something new. My life is so different now and my plans were interrupted. But I still have plans, I'm just on a different course...like you, and all the rest of us.

    Best wishes and hugs

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