jaminkw

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

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

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

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.

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

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

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

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

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

Robbi: I'm only into this about four months and I would be very interested in hearing what the feedback is on your question. I'm scheduled for one April 1 and don't know quite what to expect of it either except hopefully "diminishment of intensity" of previously identified areas where cancer cells showed up. But the bones, I wonder myself. I'll be watching for future posts. Judy in Key West

Good luck on those scan results tomorrow. Judy in Key West

Allie: Good luck with your Mom today. I'll be thinking of you. Keep us posted. Judy in Key West

Michele: Your post really touched me. I'm a Nonna who my special grandson calls Nonie and I swear I'll stay alive for him but know there are no guarantees. He is 9 yrs old but I am still tempted to buy that book and tuck it away somewhere just in case. Judy in Key West

Tracy: As a fairly new member, this is the first I've stumbled on someone going into a trial. I am very interested and signed onto CarePage. I will be following your progress. Good luck. Judy in Key West

Fred: Great daily fix. Judy in Key West

My husband usually does the shopping. When I do go with him, my first question is usually "do we have to go up and down every isle?" Judy in Key West

Hate to admit it but I still have some old 78s and 45s collecting dust somewhere around my house. Judy in Key West

Toooooo funny! Judy in Key West

Allie: So sorry to hear about your mum. I'll be keeping you both in my thoughts tomorrow. If you've cried once, you'll cry again. I'm the one in my family with cancer and there was a time I didn't cry easily. I find now that it happens spontaneous and periodically--mostly after I've heard yet again something I don't want to hear. As long as you stay open to the feeling, it will come in good time. Take care and stay in touch with the board. Judy in Key West

Snappy: I have had experience with excruciating headaches and they are very difficult to nail down. First time, the onc had a CT WET done to rule out a bleed from the Avastin. The next time I downplayed it because did't want another CT! The third time they were excruciating. I woke up with one every day. My husband observed that between the naseau, headaches and earaches that often went with them, I really did not have one good day between infusions that time. This time I made it to nine days after my infusions before the headache started. I woke up with it again this morning but tolerable and responsive to Tylenol. Switched to quick release with better results and sometimes add Atavan if it's really bad. The problem with the headaches is trying to assign a cause and there may be multiple ones. Also, it tended to move around but with a preference for one area of the head. Questions you might ask, does Joe have allergies, how is his blood pressure, can he relate it to overdoing it or even moving too quickly or bending down and getting up quickly. I would say consistently, it was the most difficult side-effect I have had to deal with. My husband is convinced it's a chemo side effect (Taxol/Carboplatin/Avastin combo, no radiation) but since I'm about to go on Avastin maintenance, I just hope it's not that. I don't think you mentioned Avastin in Joe's regime. I'll be watching to see how he does with them.

O.k., I laughed outloud at that one! Judy in Key West

I'm trying to put myself in your mom's shoes and I would look at it from two points of view. First, I would ask someone to do an internet search of foods that tend to constipate and eat as many as I could. Also, I don't know how steady she is on her feet or if there is a fear on her or your part that she will fall getting up in the night. If so, I would want a supply of depends, medicated wipes and a pail with a tight fitting lid all very close to the bed. It would mean a lot to me if I could clean myself up without having to wake someone or risk falling. Is she capable of doing this? Judy in Key West

The way your situation is playing itself out reminds me of when my first grandson was a baby. I was working two jobs, my daughter thirteen hour shifts at the hospital. If I asked my son-in-law to give me a couple of hours to get critical tasks done, he would pack him up in the stroller and take him downtown all day with his druggie buddies. The poor little thing sometimes didn't even appear to have had a diaper change when I finally saw him that. The guilt and anguish finally worked it's way out in a case of shingles on my right hand and arm. Now I was not allowed to watch the baby by my nurse daughter and she wrapped me in coverings to even allow me to hold him. Sometimes things happen for a reason to give us a break from a difficult situation when we can't give it to ourselves! Hang in there, Judy in Key West

Sorry you need to be here, but it's a great place to get information and support. I'm also sorry about your pulm dr. I don't know if you were referred to the specialist by a diagnostic center or a hospital but hopefully it wasn't your primary care doctor. If not and if you're not satisfied with the onc's referral, try your primary care doctor. Mine sent me to a great one. Judy in Key West

Fred: You've become my daily humor habit! Judy in Key West