Why so downhill - 1267790

knic
Posts:35

Hi

Looking for some advice/help/answers.

Dad 55 dx feb 2012 t4 n2 m0 stage 3b nsclc squamous
Treatment so far Radical chemo radio April 2012
Vinorelbine carboplatin chemo oct 2013
Scan in January did show the following:
Collapse of lingular and lower lobe due to Endobronchial tumour
Not much in pleural thickening
3-4cms fluid circumference
Collapse lung and atelectatic lung beneath
Left pleural effusion
Scan jan 2014 showed little progression which the onc is calling stable?!

Onc offered 3 options: chemo, biological treatment daily tablets or watch and wait.
Dad chose watch and wait.

July 2014 dad dx with angina on spray, statins and beta blockers.

Scan sep 2014 showed no change no treatment offered.

Bringing us to the present. My dads health has declined. He is tired all the time, and nauseous alot he is also sick of evenings regularly sometimes bought on my rich food he has also lost his appetite a bit and coughs a lot- coughing fits.

He had a ct scan in dec and gets results Thursday. I am scared and convinced that they are going to say that the cancer has spread and due to my dads health and angina no treatment available.
I tried to hope that maybe the angina medication could be to blame but as he has been on them for 6 months and the symptoms are new 1-2 months I seriously doubt this.

Forums

JimC
Posts: 2753

Hi knic,

I am sorry to hear of your dad's symptoms, and I understand your concern about the likelihood of progressing cancer. Though that is a real possibility, he has enough other health issues (not to mention medications) that it is impossible to know what is causing his recent decline. It could be heart issues, or pleural effusion (not necessarily in conjunction with cancer progression), treatment side effects or any number of other causes.

The first step will be to see the results of the CT, and go from there. I wish I could alleviate your anxiety, but it's easier to tell you not to assume the worst than it is to do that.

We'll be thinking about you and your dad on Thursday. Please let us know how it goes.

JimC
Forum moderator

Dr West
Posts: 4735

Yes, I certainly understand your concern, but the key is to start with what the scan shows and what the oncologist recommends. The daily pill option, which is almost certainly Tarceva (erlotinib), can be feasibly given to people who may have a marginal "performance status", even those for whom chemo might be too intensive.

There is always a risk that a patient will decline significantly while pursuing a "watch and wait" approach. This risk can be minimized by having very regular follow-up. His scan may or may not show a significant change: sometimes we see people decline for reasons that appear unrelated. That could be from other medical issues or sometimes the spread of the cancer into the brain or fluid that bathes the brain and spinal cord, called the cerebrospinal fluid (CSF), which is an uncommon but not rare complication of lung cancer (and some others) that can happen at any time.

Again, the key at this point is to start with what the scan shows and what his doctor suggests based on how he's doing clinically and the extent of progression (or not) seen on his latest imaging.

Good luck.

-Dr. West

knic
Posts: 35

Dad had results today and showed no visible progression and little change. Onc has given oramorph for the cough and booked in for a X-ray instead of ct in 3 months.

So still not sure of what's causing new symptoms.

catdander
Posts:

Hi Knic, I wanted to add 2 cents or 6. I had a bad case of pertussis a couple of years ago and the only symptom was coughing fits. However the side effects of these coughing fits were many the worst was probably fatigue, I didn't sleep long between fits and the energy used during the actual coughing had to have been enormous. So I'd be hopeful controlling the cough will be helpful.

You mentioned meals might not be the best options, so you've probably already thought about changing up food options. Most people here agree that trying different things even foods he didn't much prefer in the past can be helpful. Ensure plus or that type of calorie filled drink is popular, my husband included. Bacon and cooking with bacon grease, mashed potatoes with butter and cream cheese is calorie packed. Greens and other veggies are important addition for well rounded and I think helps metabolize the fat. And lots of protein. But mostly calories in any form.

Another FYI, my husband was 53 at dx and no treatment in 2 1/2 years has always been quite thin he still has problems getting to his original thin man weight as well as other issues. I just think about everything his body has been through and sometimes you need years if ever to heal. We mostly he keeps plugging along and I mostly he wishes every day he was back to the person he was before this damned disease. Gradually you create a new person to be. And that was a personal ramble, so...

I hope your dad does much better moving forward and has a good long watch and wait,
Janine

shy one
Posts: 49

Hello, Knic. The key to the "watch and wait" that you and Dr. West talked about is the "watch" part--and that's watching via various scans and tests that your doctor orders. And that's different from waiting and doing nothing, so don't be disheartened. Think of it as a rest from side effects.
I think Janine made a very good point about trying to manage the coughing as a way of minimizing the fatigue and other debilitating effects of coughing spasms. Ask the dr for prescription meds for coughing if what you're taking isn't working. I'm also glad she mentioned calorie-laden food for someone who has trouble keeping weight on. Baked potatoes might be easily digestible for your dad, as might ice cream. Small frequent snack meals might be easier to tolerate, also, than delicious but rich meals. Good luck with your dad.
Janine, I loved your personal ramble. You of course are worried about your husband, and it helped me to hear what my husband might be thinking as he worries about me. I, too, wish I were the person I used to be before lung cancer. We have become closer over the last 5-1/2 years since my diagnosis. Part of which I attribute to our ability to joke with each other about longevity and energy.
Nan

knic
Posts: 35

Thank you so much for your replies.

I spoke to dad yesterday about talking to the doctor to see if he can change angina meds. But dad can be stubborn as doesn't want to change fearing that new ones could make him worse. He said it is the cough that bothers him more then anything so maybe the oramorph will help.

Contrary to how much my mum and I feel his appetite has decreased he put 3lb on last week.

Thank you again for replying and send you both much love and positive thoughts Xxx