meredith

YOU GO FRANK!!

Sorry to hear of your mom. I hope they annihilate that nasty tumor! Your website is great, very moving. Way to go!

Happy your Mom is home! Moms are great

I'm so glad you're NED!! Neuropathy indeed sucks (just another thing we survivors have to deal with!), but it's great being NED! Anyway, I've just learned to live with it even though it can be tough.....

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.

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!

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?!

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

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.

By the way, here is the link. http://www.csmc.edu/4085.html

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.

Wonderful! It feels so good, doesn't it? I just got NED results on Monday and feel great. Is that a black lab in your picture? I have one too--named Ed!

Great news!!!!! 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!

Great to hear that! It's a great feeling.

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

Happy to hear the good news! I LOVE Krystal's! We don't have any in Washington State, but I used to eat them frequenty when I lived in Tennessee...

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

Hi there Tom! I also had Neulasta several times and I did experience quite a bit of bone pain. It felt a lot like bruising, but I wouldn't call it severe. Hope it gets better for you....

Forgot to add: I was told that often times neuropathy improves in the first 6-12 months following treatment, although it can be permanent. Generally, I think the less severe it is, the more likely it is to improve.

I LOVE eating! I like to bake as well. When I was going through chemo, I of course couldn't eat much and lost a lot of weight. My doctor gave me so much cisplatin because she said we were going "for the cure!" She also said I was young and could handle the doses well. At the time, however, I didn't realize I was getting so much, but I'm glad she did it because even after the first dose, my tumor had visibly shrunk (by the way, I have small cell cancer of the cervix, not the lung--though the kind of cancer I have likes to metastisize to the lung). I would bet that your numbness is indeed due to cisplatin and not any mets. As has been mentioned, the medicine Neurontin might help, so you could ask your doctor. I really like your attitude and spirit

Hi Carleen, My Lord, Keith had a lot of cisplatin and I think it has some of the worst side effects of all chemo drugs. I just finished a prayer for him.... I also had a lot of ringing in my ears, but I never even mentioned this symptom, as I didn't even know it was really related. Even now I still have a lot of crazy sounds in my ears. Has this symptom stopped for Keith? This neuropathy is such a weird symptom--numbness and pain simultaneously. It always feels like my legs are asleep and I get these terrible aches and sharp, shooting pains. It is often worse at night or if I've been on my feet for too long. I did try Neurontin but it didn't do much good. I also tried quinine, but that didn't help either. I take pain medicine--Hydrocodone--which helps some. But I'm finding I'm having to take more and more of it to get adequate pain relief, and that kind of bothers me. Also, I did start taking the B vitamins toward the end of the chemo because I didn't know they could help. Now I take a multi-vitamin and get adequate vitamins and minerals from food--I eat like a horse Take care! Hope Keith is feeling OK (is he?)

Forgot to add: I had BOTH cisplatin AND VP-16 on each of the 5 days every 3 weeks for 6 cycles.

Hi there! I read your bio and I'm so glad you are responding to treatment! Yes, VP-16 and etoposide are the same. I'm already done with these chemo combos and have been since August of 2005. The reason I ask is because most of the people I've come across were treated with this combo for only 3 days, whereas I got 5 days. Also, most people I've talked to don't seem to have quite the same degree of neuropathy. My neuropathy extends all the way up my calves to my knees and it's painful I know everyone responds differently to the drugs, but I'm just wondering if my bad neuropathy is due to higher does than what is considered "standard."

Hi Donna. Welcome--I only just joined this forum a few days ago and already I have found out a lot of information and the people are great! I had 6 initial cycles of chemotherapy and I did find that it got a bit worse each time. The nausea and vomiting were worse for me, but with medications, it was under control. Ask your doctor for the anti-nausea medication Emend. I think it was very helpful in controlling the nausea/vomiting for several days after chemo. The PET scan was no worse, in my opinion, than the CT scans. The MRI of the brain that I had was a little weird, but I did it. Best wishes to you Meredith

For those of you treated with etoposide/cisplatin combinations, how much did you have and how often? How many cycles? I had cisplatin/etoposide for 5 straight days, every 21 days for 6 cycles. I believe this is higher than the standard dose?