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Cancer is NED, but declining rapidly


KerryToo

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My Mom was originally diagnosed with NSCLC IIIB. She went into remission, then a new primary in the opposite lung appeared. She also had a brain mets. The lung tumor is stable due to Tarceva, and she had RadioStatic Brain Radition which was successful - NED.

She was taking steroids until about July, and has declined since then. She has very little energy, breathlessness, and no appetite. Week to week she slows down more and more and is able to do much less than before. She sleeps often and is exhausted at the least exertion.

She finally received oxygen (today) but says that that doesn't make her feel much better. What is going on? I wonder if this will progress to complete inability to do much of anything. What I don't get is that the cancer seems to be under control - NED - but her body is saying "I've had enough"? Any comments or similar experiences?

Thanks.

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(((Kerry)))

I'm sending you a big cyber hug. I understand what you are going through this sounds like what my mom is going through and we are looking for answers too. I think she may have radiation pneumonitis, but so far we can't seem to get any answers from the doctors. They recommended that she go to a nursing home for rehabilitation. She has been there for 2 weeks now. Last week she seemed like she might be getting a bit stronger and then all of the suddened she just got weaker. I went with her down to therapy yesterday and she had a real hard time walking :( it just wore her out. Anyway I just wanted to say I understand and will keep your mom in my prayers.

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This sounds exactly what is happening to my Dad. The chemo is working to hold stable or shrink the tumor, but he continues to get weaker and weaker. It is so hard to see him struggle so just to walk to the bathroom. He is taking a chemo break and we are hoping he will regain some strength. We just don't understand it either, but he started his decline while on Tarceva. He was on it for two months but it did not work for him. I hope you find your answers and your mom gets stronger soon.

Denise

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Also check her Thyroid levels. As if they are too high she will increasinly get weaker and weaker. T levels are supppose to be around 3, my husbands was up to 35 and he become like a zombie. A simple blood test will determine that.

Joel had his taken care of and was back to himself in 2 weeks.

I was reading your profile. Wow, it seems like your entire family has been plagued with LC. I am so sorry for you. You have been through this again and again. Please make sure you get yourself check out.

I pray they find out what is wrong with her. It may turn out to be something simple that can be fixed. fingers crossed.

Prayers sent to her for strength.

Maryanne

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Kerry,

What a frustrating time for you and your Mom! I know this is tough. I echo everyone's sentiments on getting everything checked out. My mom has a pretty complex medical history, but we've been so focused on the canncer part of it for the last 6 months that we sometimes forget there is more to her physically.

She's lucky to have you advocating for her and pushing for answers. I hope you find some soon. Let us know how it works out.

:) Kelly

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Keep pushing for answers is great advice. And when you get them, let me know!

I think that many of us who have had aggressive chemo rad. have the same lingering symptoms as your mom. I am often weak and require assistance for any sort of walking distance. Everyday is different. I now had the talc procedure and hope to regain some strength. I have damaged lung tissue, pnuemonitis and lots of fibrosis. I require prednisone to keep the inflammation down which does nothing for my muscles. They have and are continuing to waste away. Which puts a bigger load on my heart and lungs...viscious cylce.

These are some of the thoughts on my poor old body.. mostly right, maybe some wrong. But, your mom is not alone, that is for sure. It takes a lot of mental efforts and practicing hopeful thinking to keep trudging along. Muddling through. I continue to remain hopeful that eventually, I will get my strength and breath back. Hang in there!

And if you find out what the deal is with you mom, please let me know!!!

love, Cindi o'h

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Kerry, I just wanted to add my support and encouragement for finding some answers for your mom! I hope and trust she'll pull out of this, once you know where it's coming from. I know with my mom's various and sundry post-op complications, we've learned not to let anything 'go by' without a very thorough investigation.

keep us posted.

xoxo

amie

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  • 2 weeks later...

Kerry, I am so sorry that your mother is going through such tough times right now. I will say a prayer that things will improve. Like others have already said, keep trying to find a reason for this decline.

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