Bad day. Feeling very low

[elki]

I have stage 4 adenocarcinoma. Today I got my molecular test results back and I have no targetable mutations.

I also have PDL1 expression of <1%, which means although they are gonna gibe me Keytruda, they don't anticipate it working well. I'm starting a chemo doublet of pemetrexed and carboplatin. I've been warned it could be brutal.

I've asked not to be given a prognosis/time left unless it's essential and I'm not getting any treatment that is expected/hoped to extend my life. That said, my lung nurse completed the SR1 form, which is a welfare benefit form for people in the UK with less than 12 months left.

I'm really, really low. I haven't had any good news since this began, nothing to hang onto at all. It just gets worse.

I'm almost symptomless - just a bit of pain from my lymph nodes now and again, but nothing else. No cough, no breathlessness. 

How do I stay positive? I'm 40, with young children. I don't know how to process this. It feels like it can't be true. I'm frightened and heartbroken to see my family’s pain.

[LilyMir]

Hi elki, I am so sorry to hear about your situation, this sucks and it certainly is not fair being sick this young but for the sake of your young family try to hold onto hope that the treatments may actually work despite the scary statistics. The time right after diagnosis is so terrible and it often feels surreal, as if you are watching yourself from above or stuck in a bad dream. The initial shock usually improves once treatment starts. Remember that even those with targetable mutations may not respond well and on the flip side some who were given months to live are still here talking about it years later. Hold onto hope since it is the only way to live with this miserable disease.

Chemo is tough but usually the body manages somehow, tell your doctors about side effects and ask for pain and symptom management specialist to be added to your team (they are much nicer humans than oncologists). Even if chemo fails, there may be many trials you can join so so some research and ask your doctor. Seek a second opinion too if the current team is not proactive.

Have they considered radiation? If not, ask why not. Some here are almost 20 years post diagnosis despite the most dire prognosis so please do not give up too soon. Welcome to this wonderful forum, I am sure some stage 4 survivo s will share their experience with you soon.

[BridgetO]

Hello Elki. I'm sorry to hear about your situation.  Do hold on to hope. Live now, because you never know what will come. Statistics about survival are based on large numbers of people, and you are a case of one. My father-in-law had a type of non-Hodgkins lymphoma and was told that noone had survived with it for more than 6 months. He got into a clinical trial and he lived about 20 years longer. Have you checked to see if there are any trials you might be eligible for? I don't know what d system is for that in England, but maybe someone on here does. 

Also, could you get a second opinion? My lung cancer was Stage 1 and the treatment was pretty cut and dried. However,  I had a prior gynecologic cancer, Stage 3 of a rare and aggressive type. My medical oncologist actually wrote in my chart that my prognosis was "dismal". I sought out a second opinion, and that doctor recommended some additional chemo. I belong to a health plan that only pays for treatment by in-group providers and I had to pay out-of-pocket for the second (out of group) opinion. My in-group onc agreed to follow the second opinion doctors recommendation. I am now 12 years out from that diagnosis and have no evidence of disease. 

Hang in there, Elki . I hope for all the best for you.

[LouT]

Elki,

I'm sorry to hear your news.  Hearing our diagnosis is always a terrible, and lonely set of emotions.  My heart goes out to you.  The call others have made for hope is a good one.  Hope gives us a chance to live in the present with a better outlook for the future.  Your nurse may have completed a form as part of a standard operating procedure.  My wife recently passed away and she was on hospice for over 11 months.  When she was put on she was given "24 hours to no more than a few days" but she went on for 11+ months.  So, prognosis are often wrong and can be quite off base in their assumptions.  So, hope is a good choice to follow here.  If the day comes when you have to make tough decisions regarding your care, you will find strength you didn't know you had.  I hope you have a strong support group around you.  As a two-time cancer survivor I can tell you it makes a big difference.  And of course, you have all of us here to listen and help in any way we can.

Lou

[RJN]

Dear Elki,

That is a rough diagnosis - no getting around that. But having been through the mill for two years and a lot of different support groups, we see so many people ending up in a better-than-expected place. Some really do respond to Keytruda with low PDL1, and I am in touch with someone with a similar diagnosis (your age), who went NED after a round of chemo and radiotherapy.

The two things I would recommend right now is 1. Ask about radiotherapy. There is a lot of evidence that for stage people with limited metastases (oligometastatic disease), the combination of systemic and radiation can be effective. 2. Ask about and look into trials. There is so much going on right now. It would probably require travel as most are in the large cancer centres, but could be important.

I would also recommend joining the Immunotherapy Support Group UK on Facebook, as there are many supportive people with positive stories on there.

All the best, Rikke

[Tom Galli]

Elki,

How does one stay positive with Stage IV lung cancer? Almost 20 years ago, I faced your dilemma: few treatment opportunities and vast uncertainty about outcomes. An ironic viewing of the film Shawshank Redemption taught me the meaning of hope. Further musings on hope yielded a spiritual understanding (note I wrote spiritual, not religious). I  believe faith and hope are tandem precepts: one must have faith before hope develops.

On potential treatments, RJN's idea is a good one. Do ask about radiation, especially precision radiation. The different types of precision radiation are all 4-letter abbreviations like SBRT, SABR, IGRT or IMRT. Here is a link explaining how radiation treats lung cancer. When I was down to my last straw, precision radiation was the treatment that led to my cure. I went from certain death to near normal life after three, painless 15-minute treatments. In the US, radiation oncologists are getting very aggressive in treating multi-focal (multiple tumors) disease with precison radiation. I do hope UK your National Health System has a similar view.

Stay the course.

Tom