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ines.kojundzic1

I need some help

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Hello! I'm new here and looking for some advice, experience, hope, anything..

 

My husband was diagnosed with SCLC in January. Since then, he received 3 cycles of chemo and waiting the day after tomorrow for 4th. Anyway, he's still waiting for prevent brain radiaton and last scan showed good regresion.

He is having trouble with constant caugh..

Will it ever stop?

How to help him?

What to expect of all?

 

Ty for answers

 

Poslano sa mog D2005 koristeći Tapatalk

 

 

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Ines,

Welcome here.

I might need some information before addressing the constant cough.  Is your husband currently having radiation treatment for his tumors in his lung or lungs?  If he is, that could be the source of his constant cough.  You might also identify the type of chemotherapy (name of the drugs) your husband is receiving.  That could also give me some insight into his cough.  Regardless, regression from his treatment is a very good indicator.

Will it ever stop?  If you mean treatment, perhaps, but lung cancer is persistent.  I had a total of 5 curative treatments to stop my NSCLC, so 4 recurrences after treatments.  A lung cancer patient needs to prepare for the long game in treatment, unfortunately.  Here is something I wrote sometime ago about lung cancer persistence.    

How do you help him?  I know you are doing all the caregiver things so I'll assume you mean over and above taking care of him during treatment.  My wife really worked on my attitude. She was very positive about treatment outcomes even when I experienced a setback.  That assistance was very important to me.  You might also encourage his attendance at a lung cancer support group.  These groups of survivors and sometimes medical professionals are often associated with treatment centers and can essential provide support and assistance.  You should also go with him to these sessions.  You might encourage him to join this site.  Many of us here are long time survivors and it is sometimes helpful reading about our treatment experience.  A good place to start is the forum section INTRODUCE YOURSELF.  He might also want to read about those with SCLC and that forum is the SCLC GROUP.

What to expect of it all?  I can only answer for me.  I had three devastating years of near constant treatment from 2004 through 2007 but in February, I celebrated 13 years of life after diagnosis.  I suggest this expectation:  if I can live, so can your husband.

Stay the course.

Tom

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Hi, Tom!

I found this forum last night and didn't have time to read everything or introduce myself, but certanly will im a day or so :-)

About questions.. He doesn't get radiation treatements yet, just chemo, cisplatin and vepezid.
About stopping and helping, I meant about caugh, unfortunately, I know lung cancer is persistent.

I have to apologise if my spelling is incorrect :-)

Expectations.. It realy seems we are all individuals


Poslano sa mog D2005 koristeći Tapatalk

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Main problem about helping him.. We are from small country in Europe. Our doctors threat patients as things.. We dont have support groups for oncological patients. The only thing we can do is support eachother on forums, exchange experiences..
He doesnt wanna talk about his disease, or to read about it
But I do. I like to know. I wanna help him in anyway I can
Thats why Im here :-)

Poslano sa mog D2005 koristeći Tapatalk

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Sorry

His tumor is in his bronchi, has few metastases in his lungs and possible (not confirmed) metastase on his adrenal gland. Also, only one limph node (between his hearth and left lung) is enlarged. That was first diagnose

Poslano sa mog D2005 koristeći Tapatalk

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Hello!
Here is an update about my husband.
Yesterday came back his CT scan, which shows regresion from 16x8x14cm to 5x6x11cm.
Today start with 5th cycle of chemo and he must do the PCI after all chemo cycles.
Honestly, I am not satisfied. By his condition after every chemo, I expected that it will almost all be gone..

Anyway, few nodes below 1cm in his lungs didn't go away. Does it mean they became resistant to chemo? Can they be scar tissue? Inflamation? Anything else?

The nodes on his adrenal gland is not metastase, now it is confirmed.

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Ines, 

Very sorry I missed your April 9th posts. So, let me first address your concerns mentioned on that day. 

We have doctors who treat people like things also. I think that is an international medical trait. My wife was my protector and protester. She is normally calm and reserved but that can change in an instant. When she witnessed bad treatment, she would say, in a very loud voice, "don't treat my husband like that!"  And, often it would work. To change this type of treatment, someone needs to speak up, loudly!

We are your support group if you do not have one. And you might want to start a cancer support group in your treatment center. During his infusion time, ask the family members in the next chair if they want to talk about treatment or cancer. Use the Lung Cancer 101 material at Lungevity.org to educate and answer questions. Compare notes. Side effects ar often a good thing to talk about and share ideas for making them less troubling. 

I read about the disease but didn't want to talk about it either, especially to the doctors. I was frightened. My wife did my talking. She asked questions and debated treatment alternatives with my doctors. So talk for your husband. 

I had a single large tumor in my bronchus. After pre-surgical radiation and chemo, my right lung was removed. But, I had many complications from this surgery and during that period, the disease invaded my left lung. Then there was nothing but chemo to treat me. Scans during treatment showed tumors getting lager while others got smaller. I was told chemo continues to work for several months after my last infusion. So I think your report of some regression and some remaining the same is common. Wait for his post chemo scan to assess results. 

As for the small nodules in his lung, ask if they were present on his diagnostic scan. If they have not changed, it is possible they are not cancer. Lung nodules form for many reasons. 

Great news about the adrenal gland report. 

Keep us up to date on his treatment and of course send us your questions. 

Stay the course. 

Tom

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Tom, it's ok, no problem :-)

I always tought you have the best health system in world, and that doctors treat patients as human beeings :-)
That us what I do, fight, ask questuons, requesting, altought, they dont like that. Doctors think they are gods, and act like that.

People here dont like to talk about diseases, but if anybody asks, I offer help in any way I can.

Nodules in his lungs were present from the start and have not been changed.

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HI Ines,

Tom is correct- if the nodules are not changing in size- then watch and wait is the appropriate approach as they may be scar tissue or something other than cancer.  Chemotherapy is an aggressive assault to the body so I'm not surprised that he feels so bad.  

Keep posting.  I'm keeping you both in my best hopes,
KatieB

 

 

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An update..

Husband finished last round of chemo. But, they found him 2 lessions on brain, size 1cm. Now, we are waiting for decision if he will receive whole brain radiation or/and gamma knife procedure on both lessions. They found them on CT scan, he cant get a MRI, because he has metal in him. Who knows are they the only ones..
Is brain radiation effective as gamma knife?
I hate this disease..

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Ines,

I hate lung cancer also, with a passion!  

Is [whole] brain radiation as effective as gamma knife in dealing with metastasis to the brain?  I don't know.  I know people who have had each and both worked but there is always a chance of recurrence, so you need to keep that in mind.  If it were me, I'd have gamma knife because it targets less brain tissue and with my advanced age, I need every bit of brain I have....

Stay the course.

Tom

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Ines,

Unfortunately, I coughed up some "gunk" but it turned out to be scar tissue.  I think that is what your husband is expelling.  If it is part of the tumor, it is the dead part and that is good.

Stay the course.

Tom

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Hi, Ines,

I am sorry that your husband ended up in the hospital. I will reach out to some of our community members and encourage them to respond to your DVT question.

Please post an update when you can!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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