Should be thrilled... but waiting for resistance? - 1256889

localtastesbetter
Posts:3

This is my first post. I am not all up on the lingo like most on here.

My Mom was diagnosed with stage IV NSCLC adenocarcinoma ERGF after a year of misdiagnosis.

At this point she had no METS anywhere but on surrounding lympnodes and lung. So nothing in her bones, brain, or other organs. Luckily she was able to take Tarceva and just had her first 6 week scans. The doctors were shocked. She has not had any side effects, no rash, no real issues and now all of her tumors (is that the right word? What is the technical term you all use) shrunk over 50% and two of the spots had shrunk enough they were undetectable. All of her other symptoms have gone away (eye pressure, head aches, shortness of breath, loss of voice).

But I can't be happy. I am almost more sad than before. Because everything you read and hear says that this "miracle" will only last for a short time. There will be resistance and then what?

It almost is cruel joke that they can go away and shrink and then in a year she develops resistance and where do we go from there?

I know this is a long road but it has been so hard to find any stories on people overcoming it. I keep my eye out for any new research on trials going on to help prevent resistance. I just pray there will be an amazing breakthrough soon.

This is the first time I have posted about this but needed to just share.

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Reply # - May 31, 2013, 09:57 AM

judys
Posts: 74

Hi - Be happy! Some of us were on Tarceva for a long time - three and a half years for me. And since then other treatments have kept me pretty stable. I too am waiting for a good treatment for those of us with acquired resistance to Tarceva.

Reply # - May 31, 2013, 10:25 AM

catdander
Posts:

Local definitely tastes better. By the looks of your picture you're helping the process. Thanks!

About cancer. You're on the right page. It's a horrible devastating disease that will most likely take your mom's life. With stage IV lung cancer treatment is provided to prolong life and limit cancer's symptoms. So we here at Grace mostly are celebratory after scans like your mom had. I know how you feel though. My guess is we all do. We're living a very different type of life now, we celebrate more time with our loved ones, we make plans that don't venture too far in the future and we linger a little longer during each lovely moment. The present moment is all we know for sure.

I think hope is something we all notice a little more these days too. Just like life it seems to creep into and fill every unknown niche. My husband's been doing very well and I'm full of it (pun intended :) )

There are many of us on Grace who are helped by filling ourselves with knowledge about every possibility. We are better known as the regulars. I think and this knowledge helps me tremendously to cope and I apologize to all others who don't agree with my reasoning, I really am full of it sometimes...reasoning... no pun.

Find ways to fill your moments, limit the ones that aren't good for the body or you'll end up like me 30 lbs heavier and out of shape. Though I've started yoga again and loving it. I think your mind will allow the change to happen. Know your mom works hard at holding her nerve and the 2 of you will begin to focus on the moments in front of you.

We have lots of info here with up to the moment info on what's going on in the field. Click around and ask questions.

Janine
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Reply # - May 31, 2013, 11:00 AM

certain spring
Posts: 762

localtastesbetter, I understand why you might feel strange about the Tarceva. As JudyS says, it is a wonderful thing to have the EGFR (Epidermal Growth Factor) mutation (the exact acronym matters or it will ruin your searches on GRACE and elsewhere), and there is every reason to be pleased that your mother is having a great response. But after you've been in crisis mode with the cancer it is natural for a reaction to set in. It took me months to "turn the tanker round", and to accept that the sky was not about to fall.
You say Tarceva only works for a "short" time. I guess it depends what you mean by short. I think the median time for "progression-free survival" (ie time without new symptoms and spread) is about a year, which is a lot longer than the usual stats for life expectancy in stage IV. Some people live with stable cancer for a lot longer than that. I myself have had 2 years with minimal trouble, during which time I've had a great time and achieved more than I would have thought possible at the time of my dx. So it needn't be a cruel joke - it could be a fantastic reprieve. If your mother's doctors are doing their job they will be keeping an eye on her, and by the time she acquires resistance to Tarceva I hope (as Judy said) there will be some good new treatments available. Very best.

Reply # - May 31, 2013, 01:47 PM

localtastesbetter
Posts: 3

THANK YOU.

Wow. It feels like I could express myself for the first time to someone who truly understands and feels the same.

Yes, we sure do linger in each moment. We spend more time together than ever before and I have her make my favorite sandwich as often as possible.

The biggest blessing is right after her diagnosis I said in tears to my sister, "She will never see me be a Mom." My husband and I were not yet ready for children even after 5 years marriage. But to my surprise we found out two weeks later we were in fact expecting a little miracle. It has been a beautiful sense of peace in all of this.

We do live together on a family produce farm. All of us within 6 miles of each other out in the country. I wasn't suppose to move back from D.C. but my job transferred me and I found myself here just a year ago.

It is amazing to see how it all comes together.

And thank you for just understanding. And helping me be thankful in even just 1 more day.

Reply # - May 31, 2013, 02:55 PM

catdander
Posts:

Congratulations on the babe and the move. What wonderful gifts both turned out to be. Welcome to Grace I hope you find us to be helpful and supportive in the ups and downs.

If you don't mind me asking where is your farm? Don't worry about not giving out info here. It's perfectly normal to keep this private if you want.

Reply # - May 31, 2013, 03:31 PM

double trouble
Posts: 573

Try to focus on the blessings. This disease has changed how I treat myself, and how I treat others. I have a whole different perspective, and the good far outweighs the bad.

Bad things happen, but when we get back up and dust ourselves off we see we have come out the other side better, stronger.

I'm happy you found GRACE and look forward to seeing your future posts.
Debra

Reply # - May 31, 2013, 04:44 PM

Dr West
Posts: 4735

I'm very sorry to hear about your mother's diagnosis, though it's great she's responding so well.

I am currently finalizing my talk on management approaches for acquired resistance for an educational symposium here at ASCO, the American Society for Clinical Oncology, Annual Conference, so this question of what to do in the setting of acquired resistance is very much on my mind. However, there is still very little real research on the subject, and even experts vary widely in what they do. There is a growing interest in how we should approach this situation (it's the subject of a core educational activity at the biggest cancer meeting in the world), and there are more trials and new agents looking at this question. In the meantime, there are many people who very well for a very long time, and we'll only be smarter beyond this point.

Good luck.

-Dr. West

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