xalkori resistance/fall back to chemo - 1257518

Thank you Catdander and Dr West for the thoughts and information. I did a lot of reading last night on 1st line chemo and it brought me back around to where we started a short 4 months ago. She was originally going to enter a trial using carbo/taxol and then one of two other drugs. Then the ALK and Xalkori came about. Maybe the new mutation will be sensitive to standard chemo. The progressing lymph node is extremely close to the target area that was radiated on the spine. The Dr had her back in the machine to measure and line the recent CT up with her previous marks as he thinks that area and the node are close enough they may overlap. If so then chemo. We will find out tomorrow morning. Hopefully there is enough separation to use radiation. If the Med onco decides to stand pat on the "why are we doing this when you still smoke" position a second opinion will for sure be in order. We will see what comes about tomorrow. All options will be explored.

Again thanks.

We spoke to the Dr this morning. He stated the lymph node is far enough away from the previous treatment area that radiation is a go. First treatment Friday afternoon and will schedule the remaining afterwards. This is awesome news as she will get to continue the Xalkori and the continued benefit she has seen so far. : :-D Told her the bright side is no worries about being sick from chemo, and she should be mostly over the fatigue from the radiation by time she goes home to Michigan the end of September. Now I remember why I don't do rollercoasters!

Thanks for the insight, information, and this site.

Pepperhead

I have not posted in quite some time but read the posts on here every night. Wife is not eating real well, and the megastrol doesn't seem to help. She lost 1.2 lbs. from last Thursday to this Monday. Wife had a CT last Thursday and received results Monday. The look on the Dr's face said it all. The tumor on the lung doubled in size, the lymph nodes in the area of the lungs have grown, and there is a suspicious mass at the base of the neck area as well as fluid in the right lung they think is from an infection for which she is taking an antibiotic for. Dr wanted to discuss chemo. I suggested 2nd gen ALK trials. None where she is being treated. He seemed less than thrilled about their efficacy. But a HSP90 trial was looked into with their sister facility in Portland but do the trial monitoring here which was a no go. They are now looking into a trial involving the Chugai drug at the U.of W. Apparently they want to wait until the results of her brain MRI Tuesday to determine further discussion about screening. MRI is being done due to dizziness, occasional headaches, memory issues, weakness in legs, and some vision issues. I asked the Dr about time frames of chemo vs doing nothing. Dr. stated a couple of extra months from chemo but was unwilling to discuss times frames of doing nothing stating were talking "quality of life". I understand time frames are general in nature but it's a cost vs. benefit issue I feel. My thought is if she can get into an ALK trial that looks promising at the UW, and that eventually leads to further progression, we can punt and fall back to current facility and go with chemo if no other trials available. Is this a reasonable/appropriate course of action to explore? The only positive at this point is as it has been about 5 months since she had WBR her hair is growing back.

Thanks

PEPPERHEAD

Good morning,
Janine-I have pestered her about eating to the point she contemplates throwing a pan at me at times. She drinks a carnation breakfast drink 1-2 times/day and soup. Most food, even the smell repulses her and when she does eat, she eats like a bird as she gets full quick and it doesn't taste good. When dx end of Feb she weighed around 230, she now weighs 162. Initially Megase was helping but lost it's luster :( . We will know more and discuss options Wednesday I guess after getting the results of the MRI. The Dr. did say chemo every 3 weeks for 4 cycles but we didn't discuss particulars. I understand what you are saying about her Dr. being the SME on the best treatment options for her as an individual. And yes this does suck. I had hoped for a longer/better response from the Xalkori but 3-4 months is better than no months. The worst part right now is her memory issues which I'm sure are as frustrating to her as they are to me.

Dr Pennell-On the 8 week scan the Dr. stated about a 40% reduction in lung tumor and lymph node size except for the node right clavicle which was radiated. The recent scan showed the lung tumor and lymph nodes pretty much doubled in size from the first scan as well as the "suspicious" area at the base of the neck. Guess that would be the rebound effect and indicate the growth has become more aggressive in nature. Maybe chemo will be the best option up front, then look at other options without having to rush. I'll ask the Dr. Wednesday about Zyprexa. I even suggested Marijuana to boost the appetite but she's not interested stating she didn't like it when younger.

Dr West-I'll do some more research on all 3 2nd gen inhibitors. I have read so much the last 6 months thought I was going blind.

Thanks all

I have not posted in a while but visit on a daily basis as a source of guidance and understanding. My wife and best friend of 28 years lost her valiant battle with this disease Tuesday morning. Her performance status was steadily declining. We had a 2nd opinion consult at Fred Hutchinson the middle of December. The Dr. stated due to her status, the risks and potential side effects of chemo far outweighed any potential gain and suggested we contact Hospice. Realistically she probably wasn't a good candidate for chemo after the last CT. The Dr. also stated their pathologist and tumor board reviewed the biopsy slides and felt there was a mixed histology of SC/NSCLC present, which provides some insight into the short response from Xalkori and the rapid decline. It further shows that despite all the advancements, there are just as many variables that affect treatment decisions based not on science, but educated guesses as this disease is so sneaky and unpredictable. More research and I stumbled upon Dr. West's blog about why most Dr's are unable to, or are unwilling to discuss the prognosis. In retrospect I guess I had some of the same biases and it put things into perspective. I also came across the link to the New Yorker article on the importance of getting Hospice involved sooner rather than later. Insightful and helpful. She enrolled Friday, and passed Tuesday at home with our son and I with her. They were so compassionate and helpful in making the last leg of her journey peaceful and comfortable. I admire the Dr's that contribute to this site, you have a hard job. I most admire those who choose to share their journey with the rest of us. In your sharing there is hope. It has helped me maintain a positive attitude, provided me understanding, and guidance the last 10 months. You are a special group of people. For that I say thanks.

Oscar

Thank you Janine and Dr. West.

I'm dealing with things as they come about. Looking forward to going back to work next week as a welcome distraction for 8 hours a day. Gotta get back in the saddle.

Oscar