ts Posted July 20, 2010 Share Posted July 20, 2010 I am fed up from the top of my head to my toes - though actually things look (and feel) better than they did a week ago. I saw my doc this afternoon and he said I don't look too bad (not compared to someone else anyway.) So rather than reduce my dose, he recommended that I take a short vacation from Tarceva. I am happy about seeing how quickly my exterior can recover. Just a little nervous rocking this boat. But he also did not recommend gong back on antibiotics - for me that's a big win. So cross your fingers and I'll let you all know how this experiment goes. Quote Link to comment Share on other sites More sharing options...
RandyW Posted July 20, 2010 Share Posted July 20, 2010 probably so you can continue for a while longer. This way you don't get your body so used to it it stops working for you. After all it is a maintenance drug! Quote Link to comment Share on other sites More sharing options...
ts Posted July 20, 2010 Author Share Posted July 20, 2010 Thanks Randy. Actually, it isn't a maintenance drug for me - it is a targeted therapy after progression. I'm planning to stay on it until they have a cure or I reach resistance, whichever comes first! But I feel fairly confident that if a short break allows for any growth, it will be knocked back down once I restart. We are only talking about a week. In the meantime, if I can "cure" all my exterior ailments, my frame of mind will improve too - and isn't that the point? Off to sleep, night one, no drug. Quote Link to comment Share on other sites More sharing options...
Bud Baker Posted July 20, 2010 Share Posted July 20, 2010 Here's hoping everything improves for you during this break. Quote Link to comment Share on other sites More sharing options...
recce101 Posted July 20, 2010 Share Posted July 20, 2010 Hi, ts. As we discussed, my bet is that you'll feel better faster than you expect. Enjoy your "vacation"! Aloha, Ned Quote Link to comment Share on other sites More sharing options...
dianew Posted July 20, 2010 Share Posted July 20, 2010 Sounds like a short break is in order, and feeling good is so important - I think as much mentally as physically. Quote Link to comment Share on other sites More sharing options...
Janet B Posted July 21, 2010 Share Posted July 21, 2010 I hope this helps!! Anxious to hear how it goes. Back in November my scalp had gotten so bad my Dr. finally convinced me to go from 150mg to 100. So far it is still working its wonders - and although I have flair ups - nothing as bad as it was. I totally understand how hard the decision is to rock the boat - but sometimes so necessary to live with any comfort! Take care - you are always in my prayers! janet Quote Link to comment Share on other sites More sharing options...
Joppette Posted July 21, 2010 Share Posted July 21, 2010 Wishing you a lovely, healing "vacation". Judy in MI Quote Link to comment Share on other sites More sharing options...
ts Posted July 21, 2010 Author Share Posted July 21, 2010 Wow, two nights off and the area around my lips is 99% better! I've been struggling with that for a month and a half. I went to Qi Gong class today and then did a little grocery shopping (including a bunch of sunflowers to cheer up my sweetie - he's in his summer blues, he prefers the shoulder seasons of spring and fall.) Came home and have little energy. It's hot for us - 80 degrees. Appreciate all the good wishes. Quote Link to comment Share on other sites More sharing options...
eric byrne Posted July 22, 2010 Share Posted July 22, 2010 Hi Stephanie, See you are having benefits from the vacation from tarceva,if you and hubby are feeling a bit of the summertime blues why dont you get on the bus leaving shortly for Bonnie Scotland,bit cooler as well 60/70s,dont forget overcoats and wellies,(avoid talking to Geri,shes in my black books)Becky's driving the bus apparently,which I dont think at the moment is a great idea considering shes been on the vino collapseos.See you soon,Ill put the kettle on. Quote Link to comment Share on other sites More sharing options...
Snowflake Posted July 22, 2010 Share Posted July 22, 2010 Way back in the day of Iressa, I had every nasty side effect listed, sans death. My oncologist took me off it for a couple of weeks and then back on and the rash wasn't as bad - but still bad enough that we stopped it after another month. I was on a trial, and he felt the side effects were far worse than any benefit in keeping recurrences away. Were it used for active disease, the decision may have been different. Hang in there, Becky Quote Link to comment Share on other sites More sharing options...
blaze100 Posted July 23, 2010 Share Posted July 23, 2010 Wow, two nights off and the area around my lips is 99% better! I've been struggling with that for a month and a half. Good going ts! Good for you. Sounds like the rest is helping. Barb Quote Link to comment Share on other sites More sharing options...
ts Posted July 28, 2010 Author Share Posted July 28, 2010 Well, I'm back from my week of off the drug vacation. I got about 90% relief from the side effects I was dealing with. I feel much better. Today I swam an extra few laps and had the energy to buy groceries and make dinner. We might even go for a walk. I have no idea what this did on a cell level, but it was great for me. I'll admit it was a bit of a disappointment to take my pill last night, but I'm not ready to play with fire and just forgo treatment, no matter how good it felt. Funny the way this works. For those with Tarceva side effects, in one week my inflamed toenail has almost healed and I can wear shoes again, my scalp is a bit itchy, but no longer crusty, my eyelid infection (?) is gone, most of the break outs on my face are almost completely gone, I had zero intestinal trouble for the week, my thumb nails stopped peeling and breaking, and no new fingertip splits. I don't think there was a jump in energy, but my attitude was better. For some reason, I've had a series of red, only slightly itchy bumps on my back, most, but not all along the spine line. We are having a very webby/spidery year, so I may be picking up bites when I go out to water the plants. With all that, I am still a proponent of Tarceva and hope to see another stable and unremarkable scan next December. (I think it might be November, but we may take a vacation and I'll just push it off a week or two so no news will be good news. Eric - I don't think we will make it to Scotland this year though I wanted so much to go 32 years ago when I cycled around southern England and a bit of Ireland and Holland.) Quote Link to comment Share on other sites More sharing options...
jaminkw Posted July 28, 2010 Share Posted July 28, 2010 Stephanie, I keep losing my posts again so for the third time lol, I'll just say I'm glad you enjoyed your vaca. And I agree, having gone off treatment for six months, staying on treatment is a good idea. Hope your side-effect stay at bay. Judy in KW Quote Link to comment Share on other sites More sharing options...
eric byrne Posted July 28, 2010 Share Posted July 28, 2010 Hi Stephanie, I had no idea about the extent of your discomfort,with tarcava,it is a real double edged sword isnt it?hope the manufacturers can work on it to refine all the side effects out of it.Seems your are doing so much better now I am pleased to hear,sorry you cant make Bonnie Scotland this year in the keg bus,maybe we can drop in on you on the return journey back to Hawaii. You seem a real fit person, did an "extra few laps" of the pool,Stephanie you dont have to wait for a keg bus,thinks you could swim to Scotland?.Tell your husband I said hello and hope he has had his smile returned. Quote Link to comment Share on other sites More sharing options...
ts Posted August 2, 2010 Author Share Posted August 2, 2010 It sure isn't taking long to slide back into side effects city. Bummer. I hope fall brings relief. I will do my best to get through the next month or two with all the topical assistance I can handle. I even bought a hat. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted August 2, 2010 Share Posted August 2, 2010 Stephanie, I'm feelin for you girl. When my onc said Tarceva would be my next treatment, I told her I dreaded that because of the awful stories I've heard about the rash. She pooh poohed it but we know better, don't we. Judy in KW Quote Link to comment Share on other sites More sharing options...
recce101 Posted August 2, 2010 Share Posted August 2, 2010 She pooh poohed it but we know better, don't we. Yeah, it's a rash like no other. After my 3-day break the rashy part of the rash stayed rather mild, but the sore/splitting fingertips soon started and lasted 4 months. For someone who hasn't had that, it's hard to imagine how much it limits what you can do. Sounds like ts had everything at once. Hopefully, at least in total, things will be better now. Ned Quote Link to comment Share on other sites More sharing options...
ts Posted August 2, 2010 Author Share Posted August 2, 2010 We were talking about this last week - see, I really prefer what I know about Tarceva to the potential side effects of Alimta! And a pill a day over any infusion. Quote Link to comment Share on other sites More sharing options...
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