xalkori resistance/fall back to chemo - 1257518

16 posts / 0 new
Last post
pepperhead
xalkori resistance/fall back to chemo - 1257518

55 yo wife long term smoker, dx mid Feb w/poorly diff NSCLC Adeno w/4cm mass middle rht lung. Inop due to compromised lung function due to COPD dx 4 years ago.Late Feb PET shows hot lymph nodes, spine/rib. Mar medialstinoscopi confirms, ends up in ICU 3 days as lungs didn't want to work. Good news- + for ALK and she starts Xalkori. Did go from 230 to 180 lbs. in a month and a half but holding steady at 180 since starting Megastrol and Xalkori. 14 days radiation to spine due to pain and pressure. Early April 911 to hospital and 3 days ICU again as o2 sat @72% and co2 off the hook. Home o2, pain meds for fibromyalgia, and compromised lung function don't mix! April 20th seizure, CT showed 3 lesions to brain. Started at 300 mg and now at 600 mg/day Dilantin. 14 days WBR. Has some short term memory issues. Week before last CT of chest. Met w/medical onco last Friday. CT shows 6cm mass on lung at start of Xalkori reduced 40% as well as lymph nodes except the one rht clavicle which is growing steady. Dr refers back to radiation onco which we see tomorrow to see if can be treated that way otherwise chemo. I had to ask but Dr stated this is indication of Xalkori resistance and additional mutation. Is it realistic to expect response to chemo, or will It be palliative in nature? Wife going home to Michigan for month of September to see family she hasn't seen for over 6 years. She is hesitant to do chemo as she doesn't want to be sick while home, and timelines are going to be tight. We live north of Seattle. I asked about trails for 2nd gen inhibitors and Dr stated nothing where we are at and not aware of anything in the area. Trying to remain positive but it seems the hits keep coming. Only thing Dr was blunt about was to consider treatment continuation may be a waste of time as she still smokes. She has tried to quit via different options but stress and long term treated anxiety issues are making it tough. Thoughts, ideas, suggestions?

Thanks

catdander
Reply To: xalkori resistance/fall back to chemo

I'm very sorry your wife is in this awful position. While treatment would probably have more efficacy of she weren't smoking I certainly understand the difficulty in stopping. There are chemo options and since she hasnt tried any it would make since to try. There is a very good blog post in the FAQ on the right column discussing first line treatment. It starts with a explanation about treatment to metastatic lung cancer; there are two reasons for treatment, to extend life and to raise/maintain quality of life.
I'm sorry I can't paste the link, I'm in a very weak 3G area but it should be easy enough to find and it's a must read for where your wife is.

If her onc isn't willing or doesnt want to treat her it is reasonable to have a second opinion. It may be she is too weak to withstand treatment but having another set of eyes in the mix will help clarify what's what.

All best
Janine

Dr West
Reply To: xalkori resistance/fall back to chemo

I'm sorry to hear of her recent diagnosis and now some progression.

That said, there may well be reason to still be hopeful. Just today we posted a video about new second generation ALK inhibitors that appear potentially quite effective, including in patients who have progressed on XALKOR (crizotinib). I can't say with certainty that she'd be eligible, but I have a couple of trials of 2nd generation ALK inhibitors. If it would be helpful, I'm in Seattle and could offer a second opinion and potentially enrollment on a trial with one of these agents. I'm at Swedish Cancer Institute.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

pepperhead
Reply To: xalkori resistance/fall back to chemo

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.

Dr West
Reply To: xalkori resistance/fall back to chemo

Good luck -- we'll be interested to learn what you hear. For the record, I think it's overly fatalistic to dismiss a patient who continues to smoke: I don't think there's good reason to be so fatalistic about treatment being of no value if a patient continues to smoke, even if it's clearly preferable to quit.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

pepperhead
Reply To: xalkori resistance/fall back to chemo

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

pepperhead
Reply To: xalkori resistance/fall back to chemo

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

catdander
Reply To: xalkori resistance/fall back to chemo

Hi Pepperhead, I'm sorry your wife is having such a difficult time, with eating, progression, and trial options.
As far as eating, I found that my husband wasn't interested in any of his usual foods and had to buy and try things. He would take homemade high cal high protein shakes but did move to ensure plus (publix has an ensure plus knock off that he likes as well and is half the price) 350 cals in 8 or 10 ? ounces. Also adding bacon or bacon grease to just about anything seemed to be a life saver (and I don't use that term lightly). mashed potatoes with butter and sour cream...basically making anything he would eat as high cal and remain tasty.

There is a lot of discussion about making trials more accessible such as doing check up and labs maybe more at the home facilities as you tried. Unfortunately no tract...yet.

I'm sorry but it's impossible for one of our doctor's to know what the better next step (out of several appropriate) for a person will be when that doctor doesn't know the person. The problem is it depends on some unique differences that only one closely involved would know. For instance, if the tumors need to be addressed at once then chemo may be most appropriate because it could be started immediately where as a trial could take a couple of months to get started with actual treatment. A doctor closely related to the case is best to judge her health. As you said she's not eating and her tumor has grown considerably so it's certainly possible she needs to move forward with treatment get it under control. While that's happening a trial could be sought out. On the other hand if she could get started at the UW trial soon that may be very right. I'm sorry that's not an answer; cancer sucks.

I'm glad she's getting her hair back and I know when a decision is made you both will feel better.
Janine

I will ask a doctor to respond you will hear back in a bit.

Dr Pennell
Reply To: xalkori resistance/fall back to chemo

Hi Pepperhead, I am sorry to hear that the cancer is getting worse. Did it initially get better with the Xalkori or did it simply get worse without ever responding? In patients who progress on Xalkori, the second generation ALK inhibitors seems to be effective for many, specifically LDK378 was shown to have a response rate of 60% even in patients who progressed on Xalkori. The Chugai drug to my knowledge hasn't yet been shown to be beneficial in patients who progress on Xalkori, but it would be very reasonable to test it in a trial. Chemotherapy is also certainly a very reasonable thing to try if a patient has never had it before; chemotherapy in my experience can be very effective in patients with ALK translocations who progress after Xalkori although the chances of benefit are about the same as any other patient with lung adenocarcinoma.

As for losing weight, there was a clinical trial showing that the addition of olanzepine (Zyprexa) to megace was better at causing weight gain that megace alone in cachectic cancer patients, so you might consider asking her doctor about this option.

Dr West
Reply To: xalkori resistance/fall back to chemo

I would just add that the Chugai drug has actually just very recently been shown to be effective also in patients who have previously received XALKORI (crizotinib) -- I believe the data was shown at the ESMO meeting in Amsterdam last month, with results really recapitulating what has been seen with other second generation ALK inhibitors from Ariad (AP26113) and Novartis (LDK378).

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

pepperhead
Reply To: xalkori resistance/fall back to chemo

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

catdander
Reply To: xalkori resistance/fall back to chemo

I have a couple of thoughts I want to share. Perhaps try some of the other meal replacements with higher calorie content. I'm not sure about the supplementation in these drinks but there's surely a difference that may be more helpful. Cannabis has been shown to be helpful for many people but as her doctor suggests it makes some feel bad. It would be unfortunate to have that option taken away just because her onc didn't like it when she was young.

I wonder if the growth seen in the radiation fields wasn't from radiation inflammation not cancer. Most doctors won't scan for at least 3 months and most want to wait longer because of the ambiguities that show up on scans after radiation. In my husband's case they did a scan towards the end of radiation to look for readiness for surgery for a pancoast tumor, (pancoast tumor is the only occasion I know of where scans are given in conjunction with radiation) and it showed inflammation/tumor filling the entire lobe. Here is a link to a discussion on that. http://cancergrace.org/lung/2010/05/26/imaging-after-chemor/

If you don't find that relevent (I've not listened to it since in came out) then this is the list of results from a search, http://cancergrace.org/search-results?q=scan%20after%20radiation

I hope it's ok that I commented when not asked.
All best to you and your wife,
Janine

pepperhead
Reply To: xalkori resistance/fall back to chemo

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

catdander
Reply To: xalkori resistance/fall back to chemo

Dear Oscar,
I'm so so sorry your dear wife has passed. Thank you for letting us know and I'm glad Grace has been there for you. It is very important to me as well. I'm glad hospice was able to help with the going.
I hope the grief is manageable and peace will come,
Janine

Dr West
Reply To: xalkori resistance/fall back to chemo

Oscar,

I also want to express my heartfelt condolences along with my thanks that you took the time to provide a summary of recent events that may well help other people here; I also want to say that it's always nice to know that people benefit from our efforts here. I very much appreciate your kind words and want to say that you're also contributing to what people find so helpful here.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

pepperhead
Reply To: xalkori resistance/fall back to chemo

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