recce101

From Judy: I believe that's a new type that will withstand the higher flow when they inject dye for a CT scan. Mine is not that type, so I have to get a regular IV in the arm or hand when I go for a scan. Ned

No to Neulasta! The port made all those infusions oh-so-easy. My port placement was done as an outpatient procedure with local anesthesia. The "default" setting was general anesthesia, but I told the surgeon and anesthesiologist that for something that simple I preferred local, and they agreed. There was a little soreness in the shoulder on that side for about a week. Because of the delayed healing and potential wound separation caused by Avastin, there is (or at least was in 2006) a 28-day waiting period between surgery and starting Avastin. I was told that this applied only to more significant surgeries, not the port placement, so I started my Taxol/Carbo/Avastin just a few days after getting the port. I must say that my port incision healed VERY slowly, there was some inflammation off and on for 2 or 3 months, and my onc put me on oral antibiotics twice during that period since my white blood cell count was somewhat affected by the chemo. You probably won't have a WBC problem on Avastin alone, and you might heal faster than I did (my skin wasn't in very good shape), so this is just something to be aware of. My port has been in for 27 months now, and while I haven't used it for over a year, I still go in every month to have it flushed so it's ready to go "if and when." It's a great device. Aloha, Ned

I was on Avastin for a full year — 4 months in combination with Taxol and Carboplatin, and 8 months Avastin alone. I didn't have any blood pressure increase, although that is rather common. It was a quick infusion, about 30 minutes, and after the first couple of times I asked them to skip the Benadryl premed (made me sleepy for a few hours, and I wasn't getting any hint of an allergic reaction). With no premed, the only way I remembered I'd had an infusion that day was when I noticed the bandaid over my port before showering. The only side effect I could attribute to Avastin was delayed healing of scrapes and abrasions and the tendency for little muscle strains (everyday wear and tear) to build up and not be resolved in a few days as they had previously. In particular, the range of motion of one shoulder became rather limited. This resolved within a couple of months after the Avastin was stopped (for minor progression, not side effects). Aloha, Ned

Sandra, I'm not familiar with this at all, but I did a Google search for bone cement spine and got lots of references: http://www.google.com/search?q=bone+cem ... tartPage=1 This article has some good photos of a vertebroplasty: http://www.bonecement.com/index.php?id=15135 I wonder if that's the procedure they're planning for you? Sounds very promising! Ned

That's terrific, Denise! Though a lot of people in the outside world would have trouble understanding how having "just" pneumonia could be good news. Aloha, Ned

If you've had a recent PET scan, I don't think a separate bone scan would be necessary. You could ask the oncologist tomorrow to be sure. Another issue is brain imaging — if you haven't had a brain CT or MRI, you might ask about that. Some oncs order them routinely before treatment, while others don't unless there are symptoms. There doesn't seem to be a clear standard on that. Let us know how your appointment goes. Best wishes and Aloha, Ned

Barbara — I don't know why I didn't think of this before, but Sandra recently started a new group for Tarceva users and friends called the Well Lubricated Ball Cap Wearing Club: http://lungevity.org/l_community/viewto ... lubricated Bill is of course fully qualified for membership (I'm sure he has a ball cap lying around somewhere) and according to the bylaws I believe you meet the criteria too. Membership is free, but you must pay your own way to meetings, which are in my garage on Oahu (see photo in the link). Aloha, Ned

That's terrific, Sandra — so happy for your family! After we lost Hannah (the golden pictured below my profile) we vowed "no more pets" — I was still debilitated from the Taxol/Carbo, and my wife had not only me but also her mother to care for. But as my strength slowly returned and nothing else horrible was happening to the family, we started to have second thoughts. Actually, it was my wife more than me. After a few months without canine companionship, she began to abruptly stop her car on the shoulder anytime she spotted a golden being walked, then run across the road calling "may I pet your dog?" She did this numerous times, fortunately without mishap, so eventually we began looking for one of our own. A neighbor in our cul-de-sac had a beautiful 2-year-old golden (Nikki) that we greatly admired, so we put in a reservation for a puppy from the next litter and resigned ourselves to waiting. Then the breeder's misfortune became our blessing. They had about 8 dogs, were starting to get noise complaints from neighbors, and were being forced to downsize. They had been keeping Nikki's littermate for future breeding and asked if we'd be interested in having her. It was love at first sight, and Rosie adapted to our family with amazing speed. She's a real sweetheart, eager to please, in great health, and for her part gets the bonus of frequent romps with her twin sister. The ultimate win-win. Aloha, Ned

From Judy: That's one of these coping mechanisms we humans fortunately have, like when John McCain during an interview said "I haven't had this much fun since my last interrogation."

Yes. My onc gave me a prescription for the oral doxycycline and clindamycin gel simultaneous with ordering the Tarceva. You might be interested in this "What I Really Do" article by Dr. West — he favors minocycline over doxycycline, but doesn't prescribe it unless the rash reaches at least moderate severity: http://cancergrace.org/lung/2008/10/22/wird-egfr-rash/ Ned

Good update, Jackie. I'm very happy to see things are looking better for the two (three) of you. Best wishes and Aloha, Ned

Sorry for being a little obtuse. I was thinking of the substances one might ingest as a "social lubricant" as in "Hey, look at George — he's really lubricated tonight!" So now that it's clear what I didn't mean, what I did mean is to shower/bathe with a non-drying soap or body wash (such as Dove Body Wash Sensitive Skin) and keep the skin lubricated with a hypoallergenic fragrance-free lotion such as Cetaphil or Vaseline Intensive Rescue. I'd have saved myself a lot of discomfort if I'd been doing that before the rash hit at day 5. Aside from staying lubricated, my other countermeasures are oral doxycycline every day (some oncs prefer minocycline) then, as required (not often anymore), a dab of clindamycin gel on any new red bumps/pustules and some Cordran tape on inflamed/split fingertips. I've never needed medication for the diarrhea — it's more of an inconvenience than a problem. If the side effects get to the intolerable point, most oncs will have the patient stop the Tarceva for a few days, then resume either at the same dose or at a reduced dose. At about the one month point, I took a 3-day break, then resumed the original 150 mg dose, and when the side effects returned they were never again as severe as before the break. Aloha, Ned

Hi, Monique, here's one more welcome to add to your list. Give us the specifics as you learn them — such as specific type of lung cancer, stage, what chemo treatments are being suggested — and our terrific members will help you through this. We're now part of your family too. Aloha, Ned

You're right, Barbara, what a difference a day makes! Knowing you, I have no doubt that you're very well prepared to help Bill through the various Tarceva side effects, which typically start about a week into the program and peak sometime during the second month. His first step, beginning right now, should be to get lubricated and stay lubricated! (The skin, that is... ) Aloha, Ned

Hi, Donna, welcome to the group. Cases of delayed diagnosis similar to your mom's happen all too often, unfortunately. If you can give us a few more details, we'll be able to put things into better perspective for you — specific type of lung cancer, location (one lung or both), if/where it's spread beyond the lungs, which chemo drugs are being used. The oncologist may have very good reason to believe your mom will respond well to chemo, but I agree that he might have gone a bit far in saying she would be feeling better in short order. During my chemo treatment, my scans, chest sounds, and lung function steadily improved almost from the beginning, which gave me a boost mentally, but I felt weak and generally "junk" until I finished the four months of Taxol/Carboplatin and was able to switch to an easier maintenance routine. Best wishes and Aloha, Ned

Sounds like good news to me, too. And another example of why statistics are essentially meaningless for any one individual. Congratulations and Aloha, Ned

Max congratulations from the other Ned!

That's great, Jim — happy to hear it! Aloha, Ned

Yes, TOO true! Ned

Thanks for the excellent clarification, cat. I've bookmarked your post for reference whenever the subject comes up again. Aloha, Ned

Sharon, I believe the idea that proton pump inhibitors (such as Prilosec) may interfere with the effectiveness of Tarceva is still somewhat controversial and probably not discussed in the standard reference materials used by physicians and pharmacists, so I wouldn't expect a doctor other than an oncologist (and not even all of them) to be familiar with the issue. In case your cancergrace.org reading hasn't taken you down to the Tarceva vs. acid reflux discussions, here's one of my contributions: http://cancergrace.org/forums/index.php ... 420#msg420 By eliminating raw tomatoes and greatly reducing tomato-based sauces and soups, I now have predictable control over acid reflux. If we're planning to have a family favorite like eggplant parmigiana or lasagna for dinner, I'll take it easy on the previous meals and avoid the leftovers the following day. With those precautions, I find I don't need any antacid medications at all except a $3 jug of Wal-Mart liquid antacid that I take a little swig from on occasion. I'm really happy with how this has worked out. Aloha, Ned

Hi again, Gail, and thanks for the update. When you get a chance, I know the others in the Tarceva Club (current and future) would be interested in the various measures, prescription and over-the-counter, you're using to deal with the infamous Tarceva rash and other side effects. You could even put the highlights in your profile, so the info would be available with all of your posts. There's also a great amount of information on Tarceva at cancergrace.org, for example: http://cancergrace.org/lung/2008/10/22/wird-egfr-rash/ http://cancergrace.org/forums/index.php ... 04#msg2904 http://cancergrace.org/forums/index.php ... 70#msg3170 Glad you're feeling better. Aloha, Ned

So true! I have the feeling that's the way it's going to be as long as I'm around. Ned

Hi, Sharon. Check these 3 links for lots of information on managing Tarceva side effects: http://cancergrace.org/lung/2008/10/22/wird-egfr-rash/ http://cancergrace.org/forums/index.php ... 04#msg2904 http://cancergrace.org/forums/index.php ... 70#msg3170 I don't think it matters when you take the Tarceva, as long as it's at least 2 hours since you ate and at least 1 hour before you're going to eat again. Some people seem to experience a few hours of fatigue shortly after taking the tablet, so they prefer to take it at bedtime for that reason. I haven't noticed that specific effect myself — just a general lack of energy which could be from age and all the other stuff I'm taking as much as from the Tarceva — so I take it between 10 and 11 AM. I do get sluggish for a couple of hours after lunch, but that's been a lifelong pattern. I haven't used Eucerin. What I have found very helpful is maintaining a good routine of skin care and lubrication, something that was never on my priority list before I started Tarceva. This includes use of a non-drying soap or body wash for bathing/showering (I currently use Dove Body Wash Sensitive Skin), then liberal daily use of a fragrance-free hypoallergenic moisturizing lotion (such as Cetaphil or Vaseline Intensive Rescue). I do this before bedtime, then the next morning put a dab of Clindamycin gel on any red bumps/pustules that are visible. There were quite a number of these around weeks 2 thru 8, then the rash calmed down considerably. With the daily lube (also oral doxycycline) I don't get any of the itching that drove me up the wall initially. I don't think makeup would be a problem, but maybe Jamie (Jyoung20) or another of the ladies can give you first-hand tips on that. Best wishes and Aloha, Ned

Oh, Gabby, I'm so sorry. I was starting to get concerned since you hadn't posted for a while, and I intended to PM you last weekend but got sidetracked and didn't follow through. Your poor mom...she could probably benefit from counseling...maybe someone here who has experienced such a deep loss will offer suggestions. I keep reading your last paragraph over and over. It's incredibly powerful. Love and Aloha, Ned