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DanniDe

Please give me some hope

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I find myself swallowed up by fear and sadness.

I am 29 years old, my fiance is 31 -  2 months ago he was diagnosed with small cell - extensive stage. 

I am so terrified from all the awful things I have read about this disease, and find myself desperately looking for survivors. If you are out there please let me know

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Your post about your  fiancé is so sad.  I hope he has started  getting treatment.   I had NSClC but was able to go to a local support group

for lung cancer and met my friend Janet.   She had SCLC.  She was getting aggressive treatment.  She had several chemo drugs and radiation.

She fortunately responded well.  That was 20 years ago.  I can still talk to her for she has  survived.   Please let us know if he is getting treatment,

Glad you found us.  We all need support for this tough journey.

Donna G

 

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Hello Donna,

Thanks for your reply, my fiance is currently on the standard chemo - cisplatin/etoposide, and next week will be the 4th cycle out of 6.

His only side effects sofar have been hair loss, and some fatigue on the days he recieves the drugs. 

His case is actually really rare in that the primary tumor did not start in the lung - it started in the bowel, has spread to the liver, and the surrounding lymph nodes. However he is being treated as a lung cancer patient. 

It’s comforting to hear that your friend has survived for such a long time. Was janet’s cancer limited or extensive? 

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DanniDe,

I am so sorry that you and your fiance are having to battle the beast of lung cancer.  As a care advocate, it is so frightening to think of the future and the unknown after a diagnosis.  My mom was diagnosed with a different type of lung cancer - Non-Small Cell adenocarcinoma, stage 3A. That was in 2015. She went through a lobectomy and chemo + radiation.  Things looked good, but she is now battling a "recurrence" (we think it was there all along and just missed - it's a long story!). Just 2 years later, she has so many more treatment options available to her.  She started with chemo + immunotherapy and is now on immunotherapy only.  Things are going pretty well for her.  My point is that there are many more treatment options available for both small cell and non-small cell lung cancer, even in later stages.  And people not only survive, but thrive and live their lives to the fullest possible.  Your fiance can very well be one of those "thrivers".  It's really hard to see right now, but there is light at the end of the tunnel.  It is great that he is not having severe side effects from his treatment. My advice is take it one day at a time, one scan at a time.  Focusing too much on the future sometimes makes us forget about today. And we only have today as tomorrow has not yet come.

Take care,

Steff

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DanniDe

So your fience' s cancer started in his bowel ?    I looked it up and they did say it was rare.  

I had Cisplatin and Etopiside for my chemo years ago. ( and radiation.)  It sure killed my lung cancer.

Janet's cancer was in a lot of her lungs but it had not spread out of her lungs, she had preventative brain radiation.

Glad to hear that he has started his treatment.  Keep us posted.

 

Donna G

 

 

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His case is extremely rare, they told us there was a 1% chance of this cancer type starting anywhere outside the lung, and he falls in that 1% - He was also a non smoker which makes it more baffling.

We were told the treatment regime for small cell has not changed in 30 years, and treatment options are limited. The part that frightens me the most is the high chance of re-occurrence and that this disease becomes chemo resistant.  I know I should not be thinking so far ahead as it is a case of taking it day by day, but my mind is just so scrambled at the moment it is difficult to stay focused and not think about worst case scenarios. 

The professor who is taking care Aaron did mention the option of immunotherapy (Keytruda) post chemo, but he told us they will first test the biopsy for PDL1 markers - if he has the markers it has a 30% chance of response, if not, then it is less than 10% chance of working - it also comes at an obscene cost.

 

 

 

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DanniDe,

Welcome here.

Sorry I've been offline for a while; I'm recovering from a nasty chest cold.

I also consulted "Dr. Google" for information about your Aaron's small cell lung cancer and its uncommon primary tumor location.  It is indeed rare and it took a while to find medical literature.  Thankfully, small cell is a rarer form of lung cancer and treatment methods have been stagnant for a long number of years.  We are starting to see impact of immunotherapy on small cell and I do hope you get favorable biopsy results for PD-L1 markers.  I also read of successful treatment with or without markers when immunotherapy is combined with conventional chemotherapy.  So, there is hope and where there is hope there is an opportunity for successful outcome.

I have some experience living day by day.  In fact, I consciously try to live in the day and not anticipate the future.  It is my new normal having experienced a number of chronic conditions since achieving no evidence of disease (NED).  It works for me but I've found something that sustains me in my new normal lifestyle.  Searching for, realizing and celebrating a little moment of joy that occurs in nearly every day.  So while not thinking of the future is a good plan, live each day to the fullest.

We are here to support both of you and Aaron in treatment and collectively we all hope for the best outcome.

Stay the course.

Tom

 

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Hi, DanniDe,

Just wanted to check in and see how you and Aaron are doing? I'm glad to see that you've already connected with several of our members and moderators. This community is a great place to find support and information, ask questions, and share your experience. Please post an update when you can!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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Hi Lauren, we haven’t had the greatest week. 

We recieved results post 3 cycles of chemo and there has not been much shrinkage - essentially the disease is just stable and some of the lymphnodes have increased, however they can’t tell if its imflammation from treatment or not. The liver function has also spiked back up. 

We are scared that this treatment regime is not working as effectively as expected. The doctors also advised us to pull our wedding forward...

This has pulled my partner’s confidence and spirits down, he has been quiet angry and moody which has been hard to deal with and heartbreaking to see. 

I don’t know what to do, I feel helpless

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DanniDe:

My thoughts & prayers are with you and Aaron but firstly, please know there is always HOPE!

Secondly, inflammation and therefore increase in size of a cancerous node or lesion following treatment is very common.  Although my drug therapy differs from Aaron's, the same thing happened to the lesions in my brain post-treatment.  For me, it was actually a sign that the treatment was working.

Talk to your doctors.  Ask them every and any question you can think of. 

Best of luck!!! 

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