fillise Posted December 12, 2009 Share Posted December 12, 2009 Mom got her Tarceva this week and started taking it yesterday. She got onto the Tarceva assistance program and is paying a $25.00 co-pay each month. Both the staff at her oncologists office and at the specialty pharmacy dispensing the Tarceva have bent over backwards to help her get the drug. In all the fuss and fight over the Health Care Reform issue you hear a lot of stories when the system doesn't work, but you never hear when it does. In this case it did and I am very grateful. So far so good, but it's only been 2 days. I'll keep you posted. She sees the onc again on the 22nd and I will be there with here. Susan Quote Link to comment Share on other sites More sharing options...
RandyW Posted December 12, 2009 Share Posted December 12, 2009 Hang in there and Hoping for great things! glad everyone has been so good to Ya in getting this done! Quote Link to comment Share on other sites More sharing options...
paulette3 Posted December 12, 2009 Share Posted December 12, 2009 Susan, I hope your mom has a wonderful response to the Tarceva. Paulette Quote Link to comment Share on other sites More sharing options...
recce101 Posted December 13, 2009 Share Posted December 13, 2009 That's terrific, Susan! The rash should start in a few days. Do you already have some meds for that? In the meantime, be sure her skin is well lubricated with a good non-fragrance hypoallergenic lotion like Cetaphil. Keep us posted! Ned Quote Link to comment Share on other sites More sharing options...
Barb73 Posted December 14, 2009 Share Posted December 14, 2009 Susan, it is good to know "when the system works." Keeping your Mom in prayers for successful outcome to Tarceva. Barbara Quote Link to comment Share on other sites More sharing options...
fillise Posted December 14, 2009 Author Share Posted December 14, 2009 Talked to Mom last night and she said her face was breaking out. Her onc. said to call him if she developed a rash and they would tell her what to do. I'll call tonight to see what he says and add some of Ned's wisdom. Also, last night was the first time I've talked to her in weeks that she didn't cough constantly. In fact she didn't cough at all. Hpefully the rash is a sign that the Tarceva is going to do her some good. Susan Quote Link to comment Share on other sites More sharing options...
jaminkw Posted December 14, 2009 Share Posted December 14, 2009 That's what they say Susan. Here's hoping it's true for your Mom. Keep us posted. Judy in Key West Quote Link to comment Share on other sites More sharing options...
jstdzy Posted December 14, 2009 Share Posted December 14, 2009 Congratulations to Mom! Dana Quote Link to comment Share on other sites More sharing options...
shineladysue Posted December 15, 2009 Share Posted December 15, 2009 Keeping your mom in my prayers. Sure hope that Tarceva is the magic bullet. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
fillise Posted December 16, 2009 Author Share Posted December 16, 2009 Mom saw her Onc. yesterday. On just 4 days of Tarceva she developed a pretty severe rash. The Onc looked at her and thought she had been taking it at least two weeks. They have taken her off the 150 mg dose and will start her on 75 mg the day after Christmas. Anyone with experience know how long it takes the rash to disappear once you stop taking the drug? Thanks, Susan Quote Link to comment Share on other sites More sharing options...
recce101 Posted December 17, 2009 Share Posted December 17, 2009 Anyone with experience know how long it takes the rash to disappear once you stop taking the drug? It usually gets better rather fast. A couple of weeks after I started (probably because I hadn't been serious about the skin lube routine that I now strongly recommend for everyone starting Tarceva) I was climbing the walls with itchy rash and took a 3-day break. It was better after the first day, and very much diminished by the third day. I then resumed the 150mg and it never got as bad as before. Sounds like your mom might have the EGFR mutation. Was she tested for it (I wasn't). Those with the mutation generally respond very well to Tarceva, even when the dose is lowered to reduce side effects. Sounds very encouraging to me, and it tracks with the observation you made about the cough being much better almost immediately. Tarceva seems to work very fast, whether we're talking about benefits or side effects. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Barb73 Posted December 17, 2009 Share Posted December 17, 2009 Susan, I know the rash can be annoying, but it is encouraging that this side effect might, indeed, be an indicator of Tarceva doing the work. There have been reports of it working even after the lessening of dosage. My continued thoughts and prayers for very good results. Barbara Quote Link to comment Share on other sites More sharing options...
jaminkw Posted December 17, 2009 Share Posted December 17, 2009 Susan, I've heard such horror stories about the Tarceva rash and figure I'd probably go into hibernation. That would be worse than the rash itself. But I hope your Mom gets some relief from the rash because it does sound like a positive response. Keep us posted. Judy in Key West Quote Link to comment Share on other sites More sharing options...
fillise Posted December 17, 2009 Author Share Posted December 17, 2009 I keep telling her the rash is a good thing. The nurse at her onc's office took once look at her and said "Oh Good that means the Tarceva is working!" Hopefully the break this week will let her recover a bit and like Ned said, it won't be as bad after the break. BTW--Ned, can you review your routine for me? I'm going to see her on Sunday and will make sure she has all the necessary supplies when she starts back on it. Thanks, Susan Quote Link to comment Share on other sites More sharing options...
recce101 Posted December 17, 2009 Share Posted December 17, 2009 Susan, here's Dr. West's post in the "what I really do" series: http://cancergrace.org/lung/2008/10/22/wird-egfr-rash/ and be sure to read the comments. This was my routine, which varies just slightly from Dr. West's article: Always bathe/shower with a non-drying product such as Dove Body Wash Sensitive Skin and follow up with a moisturizing lotion such as Cetaphil or the unfragranced/hypoallergenic version of Vaseline Intensive Rescue (cheaper, and worked just as well for me). Have prescriptions for an oral antibiotic such as doxycycline or minocycline (I was on doxycycline for several months) and a tube of clindamycin topical gel. Don't spread that all over the face (it's very drying) but dab it onto new pustules a couple of times a day — cleared them up in a few days, and they tended not to return in the same spot. I had a bottle of Imodium on hand for diarrhea, but never opened it because Tarceva's tendency to cause loose stools perfectly balanced my general tendency toward constipation, and I didn't need any bowel measures one way or the other during the entire 16 months I was on Tarceva. My only precaution was to make sure I was close to a bathroom/restroom for about an hour following any meal. That pretty much did it until the fingertip issues began, sometime after the face rash had largely resolved. When that became severe, Cordran tape was very helpful in relieving the soreness, but that has its own limitations and cautions, which I can fill you in on if and when it's ever needed (many people don't have fingertip problems). When I was recovering from that I found an item in the nail care aisle of our local drug store that helped strengthen the nails and surrounding skin, and I'm absolutely convinced that it would have helped minimize the problem if I'd known about and used it earlier. I used either NutraNail Green Tea Nail Strengthener or Sally Hansen "Grow Nails Now" Nail Growth Solution. This is not a solution that dries hard on the nail, but more of an oily thing that you brush on the nail and rub into the surrounding skin. I think it's worth starting one of these if she starts to notice any change in and around the nails. Good luck and Aloha, Ned Quote Link to comment Share on other sites More sharing options...
fillise Posted December 17, 2009 Author Share Posted December 17, 2009 Thanks Ned. I had done a search on Grace, but missed that post. It was helpful as are your recommendations. I'll be with mom when she sees the onc again next Tuesday and can discuss all of these remedies with him. Susan Quote Link to comment Share on other sites More sharing options...
shineladysue Posted December 18, 2009 Share Posted December 18, 2009 Susan, the quick rash response does sound like a positive thing. The one thing though that can be a bad thing is if it affects the eyes. Hope that is not the case . As for taking people off a few days and then lowering the dose, I think that's common practice and it seems to work wonders for a lot of folks. Keeping your mom in my prayers, as always. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
millie's girl Posted December 18, 2009 Share Posted December 18, 2009 I pray all goes well for your mom...she's blessed to have a daughter like you Quote Link to comment Share on other sites More sharing options...
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