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Hi I'm Paula

I am struggling with depression over my imminent (spelling)  death. People want to believe I am being healed by God and I know that is always a possibility but I need those same people to understand it is a greater possibility that I am going to die from this. Does anyone ever live more then 1 or 2 year with SCLC?  I have SCLC that is metastatic? I am in my 3rd day of my 3rd treatment. I am always told I am doing so well in handling chemo and I guess I really am but then it seems to make me look not sick to those around me which is not always a good thing.  Most of the time I live my life to the fullest as much as I can. I do the thing I love the most which is to be with my loved ones. I also shoot some photography when I am up to it which is not nearly as much as I wish I could. That's about it for now.

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Hi Paula.  Any one diagnosed with lung cancer, with all that stress, the treatment you go through can get depressed.  I did.

To your question does anyone ever live more than 1-2 years.  I have a friend Janet I met in a local support group back in about 1999 and

she had SCLC I am still able to talk to her, she has survived.  She had months and months of treatment , chemo and radiation. 

Doing things that put you in a good mood is really good for you.  It raises good hormones that help you heal. 

Please keep in contact and let us know how you are doing.

Donna G

 

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Paula,

I gave a more detailed response to your initial post on the SCLC forum, but to your questions -- "does anyone ever live more than 1-2 years?"  Absolutely and I've met many, in fact, I speak with many SCLC survivors.

Stay the course.

Tom

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Hi Paula,

I'm so sorry to hear about your diagnosis. I don't know very much about small cell but I do know that new treatment options are being developed very frequently.

Having said that I also understand what it's like to be facing death. I had a similar experience as you. When I was first diagnosed the Oncologist said 6-18 months with aggressive treatment. At that time I was so sick and had so much pain that I was able to accept that death was in the near future. My family and friends however, were in denial and I couldn't get them to accept the poor prognosis.

My prognosis changed when it was discovered that I had a mutation that could be treated with targeted therapy.

I don't know much about you. How old are you? Do you have children?

How do you feel about death?

Looking forward to getting to know you.

Sincerely,

Lydia

 

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it's ok to be a realist.  Be prepared and share with others how you're feeling and the reality of your diagnosis.  Death is imminent for us all whether or not we have lung cancer. Not looking sick is both a blessing and a cure- I know! HA!

Talk to your family about your wishes and hopes...and fears too. After you've done that- it's time to live.  Whether you have 1 year or 50 years- it's about quality of life. How is your quality of life?  How can it be made better?  Are you adequately supported?  Is your pain being managed?  Do you have a good medical team and support from family?

Yes there are people who pass away from this disease- no one is promised tomorrow- but there are survivors too.  As long as you are breathing you're surviving.  Today, more than any other time, there are more options for people with lung cancer.  There are more people surviving and living quality lives with lung cancer- many of them are right here to connect with you and encourage you.

it's OK to be afraid, uncertain and sad.  We are here for you.,  Counseling and/or a support group may help too.  People who get it will understand the ups and downs of this disease.

How are you feeling?  what is your treatment plan?  Do you have a support system?

Keep posting.  I look forward to getting to know you.

Much hope and many hugs for you- 

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Hi Paula,

I'm so sorry that you have to deal with someone who judges health by looks!! I hope that they never have to face a terrible diagnosis.

That could change medicine for ever!! I can't imagine having to take a look in the mirror to see how I feel!! I've never imagined what it could be like! If I want to be cured, do I go get a facial & see if they could put a pretty face on me. Lots of blush & a fresh new eye liner could signal remission I'll bet!

I wish that friend could see the silliness of what I just shared with you. I didn't get ill at all. I got very tired & couldn't stand the smell of gas. I lived in NJ so I didn't have to pump anyway, but this way hubby would always make sure my tank was full. Even my docs were surprised that my "strong chemo" didn't make me sick. Surprised, not worried!

I hope that the answers above give you hope & that you come back often to let us know how you're feeling once you finish treatment!!

Take care,
Mary

Sent from my SM-N920V using Tapatalk


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 Wow, thank you everyone. I've had a couple rough days this time right after day 3 of treatment but still better than some of the stories I hear and not anything I can't handle. I even managed to enjoy some TV, some time on the computer and some visiting from family. Mostly I was just really fatigued, nauseous, in pain and constipated but no vomiting, NO depression and best of all, thanks to you guys and some prayer, NO loss of hope! Maybe I should say feeling like I have found new hope. I know there are no guarantees of course but I also don't want to say "I'm dying, leave me alone" which is how I was beginning to feel. Someone also reminded me there are 5 stages of death and cancer can be dealt with in those same 5 ways, denial, anger, bargaining, depression and acceptance. I figure it's ok that those around me are at different stages than I am. I did talk to a couple of people who are the closest to me and that I deal with everyday and explain to them that I needed, for my benefit, for them to at least accept that "I" believe there is a chance I could die from this whether they believed that or not. I also needed them to not rebuke what I was saying but to respect my thoughts and feelings if they were going to keep being around me. I was worried when I did that but it all turned out ok. 

 For those interested, I'm 53, I have 3 grown children ages 26, 28 and 30, 2 girls and 1 boy. 1 girl is transgender and I only mention that because I still mess up and say He instead of She and to others that can be very confusing. I also have one grandson who is 10. My oldest daughter and my grandson moved back in with me recently so my daughter could help me out. She has been a huge blessing! Before this whole cancer thing I was already on disability due to about 15 or so other physical problems I have. I am currently just doing chemo but I should start radiation soon. I have a dye/MRI test in two weeks to find out how my cancer is doing. I'm still trying to take things one day at a time and enjoy life as much as I can each day. I could say more but I feel like I'm rambling on and don't want this to become a book. LOL. I really mean it when I say Thank you to everyone. You guys really helped and I am looking forward to getting to know you all more. 

 

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Good morning, Paula,

I am so happy that you've "found new hope!" That is exactly why this forum exists: to help people living with lung cancer feel connected, to learn from each other's experiences, to find resources/support, and to give each other hope! I'm glad that you have a positive attitude and that you're being honest with people about your fears/concerns. It's important to acknowledge them, like Katie said, so that you can go on living your life and focus on other things! I think it's great that your daughter is there to help, and I hope that you enjoy more time with her and your grandson.

If you have questions or you'd like more information/resources or additional support, let us know. We're in this together.

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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  • 2 weeks later...

Paula,

Very glad you are still hanging in there. Of course, my prayers for you and all those affected by lung cancer continue.

I reviewed your past posts and didn't find any information on how you are being treated.  Are you receiving radiation and chemotherapy?  What type of chemo are you prescribed and what are your infusion intervals?  Letting us know about this information will allow other LUNGevity members to share their experience in treatment outcomes and side-effect mitigation.

Stay the course.

Tom

 

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 I have SCLC, carcinoma, metastasized. I am currently receiving chemo with Cisplatin and Etoposide. I have had 3 treatments total with each one being 3 weeks apart.  I was suppose to start radiation soon but now the doctor is saying it's too late to do radiation. I so far have had no radiation at all so this has me confused. I was told by the doctor I had cancer in my left lung, it had spread to my right lung, it was also in my Lymph nodes in my neck and my thyroid. After the 3 treatments we just did another dye test to see how things were doing. I wrote this part earlier today so I'm just going to copy and paste:  All I can seem to do today is deal with shock. I had good news from my test the other day. Well, I thought it was really good until...
When they found my cancer I got the dye test and the oncologist told me it was in the left lung, partially the right lung, the lymph nodes, and thyroid. I went the other day for my latest dye test. Before anything else, I was told that there was a drastic improvement in my cancer. I was excited right away, with a big smile on my face and a sigh of relief. It was at least going the right direction and it was drastic. After that they went over what the new test showed. Cancer in lungs is less, minimal cancer in my shoulders and upper back. Cancer has decreased in my lymph nodes, cancer has decreased in my bones in lower back and pelvis, cancer has decrease in lymph nodes, no cancer in adenoids, Cancer has decreased in the thyroid, cancer spread just a little but not significantly. At this point I was too shocked to even ask where it had spread. Does anyone else see the problem between what I was told the first time to the second time. No one mentioned bone cancer, nothing about my lower back or pelvis. no mention of my shoulders or upper back. WTH, I feel worse not better. UGH so much frustration, anger, depression. Please pray.

 

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I forgot to mention that it was not the doctor that read the results to me. Now these were the exact records the doctor was given. As he read and was confronted about the difference he stated that they must have been interpreted incorrectly. He also stated I was in remission. I knew for a fact that that was not true. Later in the conversatoin he said there was very little left and it never was anywhere but the four areas he mentioned. This is not the first time he has done something like this. I know I still want a few more rounds of chemo with the same drugs so I think I will go until those are done and then look for another doctor. In the meantime I am telling my doctor that I want to see a copy of the test. Again, it is all so frustrating especially when you feel you can not trust your doctor to tell you the whole truth. Again, thx for listening. This site has helped a lot.  Paula

 

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Paula,

Ok, I think I understand.  By dye test, do you mean CT with contrast (contrast being the dye)?

First thing I advise, these are your test records.  You can and should ask for copies of them.  See the clinic nurse before or after your next scheduled infusion and tell her you want paper copies of all scans conducted.  Then, take those copies to your family doctor or general practitioner.  That ought to clear the confusion about where your cancer was located on initial diagnosis and where it is now.

Second, it is not unusual for there to be dramatic reduction in tumors even half way through your infusion process.  I had one such in-process scan that indicated no evidence of disease (NED) after only 2 infusions into an 8 series schedule.  Yes, I finished the remaining infusions and suggest you do the same.  Even if things are drastically improving, you still want to ensure you kill every last cancer cell!

Are you attending your consultations with your doctor with a second person?  A second set of ears is always helpful, especially when it comes to confusion like what you are relating.  When I was in treatment, I was so "out of it" that my wife did most of the questioning.

I'm betting on the drastic improvement by the way.

Stay the course.

Tom

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Yes, a CT with contrast. I couldn't remember what it was called. I am going to finish all my chemos. I have 3 left for a total of 6. I didn't think to ask the nurse for all of my records so thank you. I can do that when I get my next chemo which is coming up soon. I haven't been having anyone with me unless it was when I was in the hosp and my daughter was there and the initial visit with the doctor after the biopsy. I will see if she can go with me this next time.  The drastic improvement without all the extra sure would be nice. I know I'll be praying for that and so will my friends and family. Thank you very much                                                                                                                                                                                             

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The doctor showed me the actual scans today. As of now I am in remission but will still finish 2 more rounds of chemo. However can you pray that God help me to know what to do as far as radiation. I have to meet with a radiologist to ask questions and decide what to do.Both Radiation and the two remaining chemo's would be preventative measures because small cell cancer can come back too easy and we want to do our best so it does not come back.

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Paula,

Well that is good news.  I agree with your doctor.  Complete the two remaining chemo treatments and finish the scheduled radiation.

But, no evidence of disease is a wonderful result.  Celebrate! 

Stay the course.

Tom

 

Edited by Tom Galli
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Paula,
Firstly, I agree 1,000% with Tom! Good news & stick with the recommended chemo & radiation.

Now, to our similarities! OMG! I am 53, though I was 47 at Dx. My husband brought 2 adult children into the family, a boy & a girl in their 30s. My daughter is 26 & we actually have a grandchild from each of them & the boy has another on the way in June. I also have my firstborn, a baby girl who I gave to a better family at birth who reached out to me when she was 16, she is now a 33 year old man, who still needs surgery to finish the process.

How stunningly alike do we sound?

Sending more hugs & prayers!!
Mary

Sent from my SM-N920V using Tapatalk

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Oh, and my chemo was etopiside & cisplatin! Most of the people I know who used a platinum used carboplatin... you may be only the 1st or 2nd person I've "met" who had that one, & definitely the 1st with both together!!

Cheers,
Mary

Sent from my SM-N920V using Tapatalk

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