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Has anyone heard anything about M.D. Anderson? (new to site)


dana c

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Hi

I found this site a couple of weeks ago, but wasn't sure what I wanted to say. My Mom, my best friend, was diagnosed w/ SCLC limited stages in November of 2002, my son (her first grandchild) wasn't even 3 months old. They started her on VP16 & cisplatin, she did that I believe 4 times, maybe 5 and the next time she went in, they told her it wasn't shrinking the tumor anymore and so they started topotecan, a couple of weeks after that she started getting really short of breath went in for blood work and found out she was anemic, they gave her procrit but it didn't seem to help, she went in for a chest xray and found out the top lobe of her left lung had collapsed. Basically the new drug didn't do anything and the tumor grew, she's doing radiation now, she's going on her second week but so far it hasn't done anything, does anyone know if it usually takes a while? I went to www.blochcancer.org andfound out about M.D. Anderson. Has anyone heard anything about it? Have to go (crying baby) will write more later. You are all in my prayers.

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Hi Dana

Sorry to hear about your Mom...but they have come a long way with cancer treatment.

Hopefully the radiation will work to shrink the tumor...I had 6 rounds of vp/16 & carboplatin and at the same time with 30 rounds of radiation.. The tumor went away but did come back in another spot about 8 mos. later..The Dr.'s. just need to find the right chemo for your mom..I suggest getting reports of everything and make an appt. with another (or 2) Dr.'s..to see if they agree on treatment. University Hospitals have some of the best Doctors. Maybe you can find a Lung Cancer Doctor in your area.

Thoughts & prayers for you and your Mom.

Fran

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Thank you for the kind words & info. My son's asleep right now so I have more time to write. My Mom see's her oncologist once a month and has a chest x-ray,( itleast when she was doing the chemo) only once a month. It seems to me that w/ such an aggressive cancer they should keep better tabs on it??? Any thoughts? I am just so scared that the couple of weeks when they switched her to topotecan and it had no effect and the tumor actually grew that it also spread I just pray that it didn"t (my keyboards messed up so excuse the lack of punctuation)

I keep trying to talk my parents into going to MD Anderson I just feel that she will have a better shot there They talked to her doctor about it yesterday and he told them that they would be doing the exact same thing there and that they really didnt have that great of a cure rate either But I got on their site the other day and read one of their CMEs for physicians and it said limited stage can be cured I just feel like her doctor isnt being as positive as we need him to be I feel like half the battle is my moms attitude and she needs someone to give her hope not grim statistics Any ideas on how I can boost my Moms attitude? I keep telling her that she is in control of her care and that if they arent telling her what she wants to hear that we need to go somewhere else I think Im just babbling now sorry I just feel that they should be treating more than just the tumor

Im so glad I found this site Thank you for the responses You are all in my prayers

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Hi Dana,

I couldn't tell from your post what part of the country you or your Mom is in. The block center Marlon always talks so highly about:

He wrote

"You would not believe how complete their program is. They won't even let you do chemo without a port! A typical day for my mom goes like this, 1] The nurse and doctor talk to us for a bit then take her vital signs, 2] My mom does their breathing exercises, 3] Vitamin infusion. 4] Chemo. 5] Massage. 6] Psychologist appt. 7] Nutritionist tracks her diet compliance. They DO take insurance and they don't impose anything on you. You can even ask for lower dosages of chemo any day that your condition calls for it. Ahem, and they offer SUPPLEMENTS(!) which are the most important aspect to the healing process and help build your body up. I will send you my links about the center in a heartbeat if you ask me. Or just call them and they will send you a free brochure. "

And it made me wish that My Mom went there. It is in Chicago Illinois. I think that having a positive doctor is half the battle. And many here will tell you the same. My Mom's doctor felt that he could get her cancer into remission and so far so good! I hope that your Mom finds the right one to provide her healing and positive energy.

Blessings to you and your Mom

Laurie

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Dana,

I've heard about MD Anderson too. We are in Dallas / Ft. Worth area an MD Anderson is in houston. I've got MD A. and Cancer centers of america in my back pocket in case my dad's reg. Oncologist hits a wall and throws in the towwl (My dad's Dr. is very much "all business", he follows the "standard" treatment regimene of sclc) He isn't positive either, he's just nothing.

BUt so far he hasn't don't anything to discourage us and I am the one who works on my dad's attitude. I visit regularly, I go to every Dr. appt. and I bring stories of hope to him from this message board. It's the least I can do and so far it is working.

Dad is on topetecan now. He had a recurrence last month after have clear CT's for three months, so here we go on chemo #2. I hear topetecan is good and I am praying it works.

Have you tried talking to a Dr. at MD A.? Maybe they could give your mom a second opinion by simply looking at her medical records and scans? Many places do that, and it helps because you wouldn't have to "travel" so far. If you haven't already, get copies of everything written and all films.

I am sending positive vibes and prayers for you and your mom.

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Sorry to hear about your Mom. My husband was diagnosed withextensive stage SCLC in December. It stinks to be dealing with it. We have chosen to go the traditional route for as long as its working. We live in Massachusetts and are keeping Dana Farber in the back of our minds in case this doesn't work. I do not think that bigger is necessarily better. A collegue of mine whose husband has NSCLC is seeing the same onc that we see and also going to Dana Farber as a second opinion. So, they see doctor's twice as often as we do, travel at least monthly across the state to Boston and Dana Farber is not doing anything any different than his regular doctor. Still, they ARE state of the art and have a wonderful reputation, and do wonderful things I understand. I don't mean that as a dismissal of what they do.

Katie - our onc is the same. Not exactly postive, not really negative, just all business. I find that a disappointment, though I think he knows his stuff.

I also go to every treatment, every doctor's appt. Oddly enough, the treatment itself can sometimes be a positive thing, at least where we are. Hugh's treatment is given right at the doctor's office. That may be the norm but it sure suprised me. There is a large treatment room at one end of the building, its all furnished with recliners huge windows at every chair with bird feeders. The nurses are very upbeat, they "serve" juice and snacks to anyone who wants it. Even those receiving treatment are mostly upbeat. We all joke and chat about things that we are going through - kind of like a monthly support group. There are games available to anyone who wants to play, warm blankets, hot packs if your hands or feet are cold. All the nurses and lab techs know us now and they all go out of their way to chat with Hugh and see how he is feeling. One of those places that you don't want to have to be, but when you find yourself having to be there at least they make you as comfortable as possible.

Hope all goes well with your mom!

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Hi Dana,

I found the MD Anderson site to be very helpful and to have lots of good information. I think they have a very good reputation. They have a great chart that shows treatment plans for different situations. I was able to follow it with what my onc is doing and know what questions to ask and feel better about the treatment I was receiving. This is also the place that I found out about the 2x day radiation that is now their standard when it can be tolerated. I have the option of going to a university hospital 65 miles away and have chosen not to. At this point I feel confident that what is being done is as good as anything that can be done. My quality of life is very important to me, but I do think it is important to get a 2nd opinion. I like my onc and he has access to all the medications anyone else does. As long as he is willing to discuss different options and treatments I feel like I can get from him closer to home what I could get anywhere else. I'd like to hear others thoughts about this too. The radiation equipment is another matter as it will depend on the facility. I would check to make sure the equipment being used is up to date. If I see a promising treatment being offered that isn't available here, I would definitly consider it. I agree that we should all get †he opinion of a lung cancer specialist if for not other reason than to feel confident about what is being done. Best of luck.

Jenny

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