Frustrated and Heartbroken - 1267697

karenb
Posts:31

I tried to find this question/comment in the archive but was not successful. I hope I am not repeating a previous subject.
A quick intro: My name is Karen and I am 61 years young. I was diagnosed with nsclc stage IV with meta's to the verebrae & rib. This all started back in July, 2014 when I finally got a chest x-ray after having a drip cough for a long time. Since then I have had 3 CAT scans, 3 brain MRI's, liver biopsy, vertebrae biopsy, and 2 lung biopsies. After consulting with an oncologist, she helped me find research trials that were in the same state that I live in. For the last 3 months I have been traveling back and forth doing test for these trials. The first on was a MED14736 but my tissue sample from the lung biopsy came back 'inconclusive' twice so I was rejected. I waited to get on another trial, MEDI4736 combined with Tremelimumab, having to repeat the scans, brain MRI and another lung biopsy. I just found out that again my tissue came back with no cancer so they could not get a genetic mutation which is required for this clinical trial. I have now been rejected again.
What might be the chance of a 3rd biopsy showing genetic mutations? I had read somewhere about plasma being used instead of the invasive biopsy..anyone heard of this?

Forums
Full Archive

Reply # - December 27, 2014, 08:25 AM

Dr West
Posts: 4735

I'm sorry you're in this frustrating situation. I hope that you're receiving some form of treatment during this long process, as I would hate to think of you chasing trial after trial, biopsy after biopsy, while foregoing treatment that actually has a proven benefit. These trials are encouraging, but they are trials because the treatments in them are not yet of proven value, so I would be wary about the tail wagging the dog and having your life be entirely focused on getting onto a trial that may prove unhelpful, if you can even participate at all.

I would be wary about putting so much focus on a trial that you would become heartbroken over it. These agents don't have the proven benefits of the commercially available drugs already available to you. In fact, there are more agents now than there were 5 or 10 years ago, and there will always be new agents in trials that may or may not be available. I would hate to think that you could practically or even just psychologically ignore the benefits of what you have readily available so that you can be made miserable by what may not even help you but is just beyond your reach.

Practically speaking, I suspect that the trials you would be interested do NOT allow for testing from plasma, which itself is still investigational. If your biopsies have been non-diagnostic (no cancer), another biopsy would be the best bet still, but that needs to be weighed against the time and effort required to try again.

Good luck.

-Dr. West

Reply # - December 27, 2014, 11:15 AM

karenb
Posts: 31

Thank you Dr. West for such an immediate reply. Unfortunately I have not started any treatment and was doing exactly as you described. My oncologist here noted in my documents that I did not have such a high burden of disease that necessitated immediate treatment at the time. I visited her again in November and she was still ok with me trying these new meds. If I go back to her she noted I would be on the carboplatin/pemetrexed approach.
I have been scared to death about doing chemo and had heard such wonderful things about the trial drugs such as little side effects, fast resuts, etc. I needed someone out there to kick my butt into starting chemo and you did it!
Last question: Why do I not show genetic mutation..? Between the 2 lung biopsy's the radiologist took 9 samples. Is this common?

Karen

Reply # - December 27, 2014, 01:24 PM

catdander
Posts:

Hi Karen, Welcome to Grace. I'm terribly sorry about your diagnosis.

Unfortunately it's not so uncommon to have inconclusive biopsies even with all the samples taken. It happened to my husband. I'm guessing the tissue taken from diagnosing biopsy is too small for mutation testing?

From what I understand, anticipation is often more difficult than the actual treatment. Some people even have few or mild side effects and most can be treated. Take the oncologist's and nurses' tips seriously. It's important to take meds on a regular schedule, don't wait for nausea to happen. Eat small meals of food that appeals to you (that can change from the norm). Let your body rest, fatigue can be tough if you can't rest. Most often side effects calm down within four or so days after treatment.

We'll be here to help.
All best,
Janine

Reply # - December 27, 2014, 04:20 PM

Dr West
Posts: 4735

Many chemotherapy regimens are very well tolerated, and carboplatin/pemetrexed (Alimta) is among those that is typically very well tolerated. I think it is a real mistake to have a dread of chemotherapy beyond what is truly justified, considering that this is a therapy that has a proven survival benefit as first line therapy for metastatic lung cancer. The clinical trial approaches you are focused on are absolutely NOT demonstrated to be more effective or even as effective as standard chemotherapy. I think it is a very serious mistake to presume that investigational therapies are miracle treatments and that the established treatments are of negligible value.

It is very easy to have new treatments hyped far beyond what they truly deliver. Don't believe everything you read on the internet, especially from people who aren't qualified to give medical advice to you.

-Dr. West

Reply # - December 28, 2014, 07:19 AM

chebird
Posts: 104

Hi Karen,

I just wanted to chime in and tell you my family's experience with chemo. My husband had chemo combined with radiation for weeks and only missed one day of work during the treatment. My mom has been having chemo every two weeks for a year and a half and is doing great. She has mild fatigue a few days after treatment.

I urge you to give it a try.

Blessings,

Holly

Reply # - December 28, 2014, 08:05 AM

costica
Posts: 99

Hi Karen,

I am not a doctor. I read though your post and it struck me why an oncologist would prioritize a clinical trial over standard chemo (which has a clearly proven benefit). As I also look for any possible trials for my mother, I looked up your trial:

https://clinicaltrials.gov/show/NCT01975831

There, for inclusion criteria, it says "Failed to respond to or relapsed following standard treatment, or declined or was not eligible for standard treatment." That means you are still eligible to participate in the same trial after having first-line chemotherapy.

Please not that the trial is phase 1, with the purpose of finding out what is the optimal dose of the drug. You cannot assume anything about the side effects and efficacy for such a study - really, nothing is known.

All the best!

Reply # - December 28, 2014, 09:12 AM

cards7up
Posts: 636

I'd be running for a first line treatment and put the trials on the back burner if needed.
Take care, Judy

Reply # - December 28, 2014, 09:33 AM

karenb
Posts: 31

I am so glad I finally opened up on this site rather than just lurking! As I was waiting and learning the art of patience trying to get into the trials, I was also trying to live as normal as possible. I have always been physically active (aerobics teacher, physical education teacher and lately a personal trainer) and never really been sick in my life. I eat very healthy and mostly organic.BUT, now I have so much fatigue & anxiety that I seem to need to rest all the time. I wonder if this is psychological or really physical. I fight to keep weight on but had lost 10 lbs in the beginning .
I want to thank Dr. West for telling it like it is and being here for all of us. Holly, Costica, Judy & Janine thank you for the much needed support. It is such a relief to find people who I can talk to!

Karen

Reply # - December 28, 2014, 05:37 PM

Dr West
Posts: 4735

Very nice of you to say. Please do keep us posted as you move forward!

-Dr. West

Reply # - January 1, 2015, 06:44 AM

karenb
Posts: 31

Update: Went to local oncologist (Mayo) and will be getting the port and start of chemo on Tuesday, 1/6. Looking forward to starting the new year with a solid plan. Happy New Year to all of you!

Previous PostNext Post