jaminkw
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Posts posted by jaminkw
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Barbara: Thanks to you--for the other site info but especially for the tech info I'm usually bugging Ned for. I didn't even know you could respond to each person individually let alone how to do it! Thanks again.
Judy in Key West
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Muriel: I go to MD Anderson and didn't even know the oncologists are specialized there. All I remember is someone telling me she was the head of the medical oncology department. So you think she's a lung specialist? Come to think of it the husband of someone on this site goes to her too so maybe she is. I like her alot but just on principle would really like it if she specializes in lung cancer.
Judy in Key West
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Sandra: Think it's a conspiracy? Nobody is naming "the other site." I'm curious too!
Judy in Key West
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As a relative newcomer myself, I can tell you you came to the right place. There are lots of people here, patients and caregivers, who will offer you much support and answer the many questions you'll have along the way.
Hang in and good luck.
Judy in Key West
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Oop's, 3 years not '03 but it's still awesome.
Judy in Key West
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Haven't been around since '03 but wanted to say hi. I'm a flower freak and panies have always been one of my favorites. Also, your husband is doing great since then as a IV so he's an inspiration to those of us who are also III/IV's. I'll keep you and him in my thoughts.
Judy in Key West
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Oh Maryanne, that was priceless. It helps me missing my Fred fix. Where's Fred?
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First I don't know from your Mom's profile if she's a or b? The only reason I ask is because it's generally felt among some hospital staff who work with patient finances that IIIb lung cancer is fairly certain to allow disability payments. My advice would be to file as soon as you can after your mother stops working. They can tell you they have bizarre rules like you have to wait five or six months after filing to get approved and it's a standing rule that you don't get medicade until you've been on disability for two years unless you qualify for very stringent minimum annual income requirements.
Don't give up on getting help for your Mom. Some hospitals or cancer centers have personnel in finance who can help. You just have to ask. I'm sure many on this board know what it's like to have the stress of beig dx'd with cancer compounded with how you're going to pay for it.
Judy in Key West
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I'm grateful I was born with the optomist gene so I can keep bouncing back.
I'm grateful that my husband went to a picnic without me today without trying to convince me to go: I said you'll just have to go without me. He said why, and I answered I'm getting frustrated with everything trying to get ready because I just don't want to go. He brought me back a hotdog. I'm grateful, we did good!
Judy in Key West
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Omg Rich! The timing of this opportunity to congratulate you couldn't be better if you intend, as you say, to encourage newcomers. I'm on the upswing from a BIG nosedive that had me telling everyone including the chemo nurse this last infusion that I really didn't want the maintenance Avastin. She gave me the controls, I could have opted out of it but decided to go through with it. It's the option I have right now. Your experience is certainly reinforcing that decision even though you don't appear to have taken that particular chemo. I have to go with what my doctor indicates is my best bet and boy and I'm waiting on my next CT/PET on April 1.
Judy in Key West
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Sandra: Congratulations! Who wouldn't be over the top. What a gift to you, your doctor and his staff, and a gift of hope to all of us who have received the dreaded IIIb dx!
Oh, and thanks for giving some of us who don't know a cue about the "virtual pub."
Judy in Key West
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If the hospital where you got your second opinion is a very high ranked teaching hospital one would expect they would give you appointments within a safe timeframe. I would call back and tell whomever made the appointments that you are nervous about the timeframe and would like to speak to someone on the oncologist's team to get reassurance. If it would be helpful to get the scans locally and take them with you, ask the teaching hospital that as well. I took scans from a diagnostic clinic to MD Anderson Cancer Center and was going to get my followup CT/PET there as well. I changed my mind but until then it was acceptable to my oncologist at MDACC.
The decisions we have to make in the course of this battle have proven to be one of the most difficult things for me. Good luck.
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Greg: Lots of important information but my question is about your reference to "Medicare-approved assays are the DISC, MTT and ATP, known as Oncologic in Vitro Chemoresponse Assays. In 2006, Medicare officially recognized these cancer assays as a special test category in Federal Regulations (42 CFR 414.510(
(3), 71 FR 69705, 12/01/2006)." I've never heard of these tests. I'm not on medicare until Feb 09 but do you know where these tests are being done and under what circumstances?Judy in Key West
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Patti: Thanks, I needed that. And I read your profile so it's high praise considering the source.
Judy in Key West
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Thanks guys for all the feedback. I was relieved when Ned said when Dr West said 15mg/kg, he meant 15mg based on kg of body weight and that the 25mg on my itemized bill may have referred to the dilution rate.
I was really freaked out before this infusion and really was looking for a reason not to do it. Oddly enough, my chemo nurse came in to apologize for how long it was taking to get me started--she said the pharmacy sent up the wrong milligrams. That gave me the perfect opportunity to ask, although by now it's really academic. Her answer jives with what everyone is saying--700 milligrams when I started, she couldn't remember what it went up to exactly but it was only a little. We both figured that was because I've gained nine pounds since I started!
I had myself really worked up the morning of the infusion and my husband warned if I didn't calm down my blood pressure would be so high they wouldn't do it. That almost happened but with a really sweet tech I've had before and a new (to me) young chemo nurse who was a sweet as can be, I settled down and the second bp was good. I took my infusio like a good girl but still asked for the hour because of the awful headaches I've had with the prescribed half hour infusion and my fear of the bp giving me a stroke. What a difference a different nurse makes--when I asked her if I could, she said if you want an hour you get an hour!
Now I wait to see how the side-effect are--so far so good but the headaches don't usually kick in until day nine but I think the horrible sore throats started the first morning after. None so far on day one following the infusion.
Now I also wait for three weeks for my first CT/PET since right before my dx.
What have I learned about myself so far? I'm not as tough as I thought I was but damn, I'm feeling a lot stronger today.
Thanks again, Judy in Key West
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Allie: I travel a distance to get my chemo and just got back. Glad to hear your Mom o.k.'d the treatments. Waiting to get the tests and then the results is tough but keep us posted.
Judy in Key West
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Greg: I read your post this morning and have questions, but with daylight saving time I'm already late getting ready for my trip to Orlando. It's my first Avastin maintenance treatment (the treatment that has sent me on this academic search), and the KOA where my husband and I stay has a very iffy internet service. I'll email the questions when I can.
Judy in Key West
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SandraL: I just came across your post in early Feb. I am a IIIb and think I understand that I am because, like you, I had a pleural effusion and they drained 2 liters of fluid from my left lung. Unlike you, they did find cancer cells in the fluid. You mention radiation treatment but not how and where they found a tumor. They didn't find a tumor in me after x-rays, CT-scans, CT/PET scans and MRI so I didn't get radiation just chemo. I had six rounds of Taxol/Carboplatin/Avastin, showed "improved" after third or fourth infusion and am scheduled to start Avastin maintenance.
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Greg: So now I do think I understand the futility of developing the genetic or "targeted" assy. But what about the functional assy. Are we doing this now with scans or other testing methods, or is this still to be developed?
Judy in Key West
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gdpawel: You're way over my head in detail but I get the general idea. Something tells me some people in the industry know it won't work but if they can convince the public (and the FDA?), oh well $$$$$$$$$ anyway.
Judy in Key West
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I have an MA in Counseling Psychology with an emphasis on communication and would love to help. Hope I have a little time though because I won't be able to get to it right away. I travel for my treatments and am getting ready to go day after tomorrow. Let me know if late next week is o.k. and I'll jump on it then.
Judy in Key West
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Did anyone who has been on Taxol/Carboplatin/Avastin combo know what amounts in mg of each they were receiving each infusion?
Judy in Key West
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Tracy: I saw your good "stable" news on your CarePage. Congratulations and here's hoping you get the real thing the remainder of the trial.
Judy in Key West
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Randy: Yea, I made my way ploddingly through the article. I have to admit, I scanned a few paragraphs as I was most interested in my next therapy--maintenance Avastin.
Before I comment on the article, I have to insert a quote in response to a question I posted recently on onctalk.com. Dr West said: "I just wanted to chime in to say that I totally agree with Dr. Laskin here. 'Targeted therapy' is a nebulous term that people use to convey that they have some idea of what the treatment is supposed to be doing, but it's really just buzz-speak -- vague marketing to suggest that it's new and improved and not that old school chemo people used to have to take. Other experts have suggested that the definition of targeted therapy is any cancer treatment that has come out since about 2002.
We really shouldn't forget that chemo is targeted and radiation is targeted, even if the target is DNA and not "EGFR" or "VEGF" or some other molecule you've never heard of before. The quotes you mention sound like typical vague fluff about something pretty complex."
That out of the way, the article was interesting in that it did seem to try to strike a balance between benefit and hazard of the therapies reviewed. I have looked at Avastin (and particularly the maintenance use) from so many perspectives on the net and really don't find much that conflicts but neither does the info do much to help me make my personal decision. The risks are significant to me, particularly the possibility of heart attack or stroke if I can't get and keep my blood pressure under control. And the leap of faith required to do a treatment indefinitely that has only been suggested to slow down the cancer in one trial (that's all I can find), not randomized, and not with patients with lung cancer feels like a huge leap to me.
Judy in Key West
Thanks for the link cause I for one am not yet done digging into the pros and cons of cancer therapies!
Judy in Key West
(3), 71 FR 69705, 12/01/2006)." I've never heard of these tests. I'm not on medicare until Feb 09 but do you know where these tests are being done and under what circumstances?
Trying to stay "UP" but not even close!
in GENERAL
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Barbara: Thanks so much for your kind words and support. I pm'd you a reply.
Judy in Key West