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Keli

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HI I'm Keli

I was diagnosed with NSCLS Stage 3B in Jan. 2010.

Had Chemo - Taxol and Carboplatin for 4 treatments. After the first 2 treatments things looked really good the Nodules were shrinking and the Lymph nodes also.

I had another PET scan this last Monday and the Nodules are coming back with a vengeance. I am trying to keep my life as steady as I can as I still have kids at home. I am 49 and need some advice from people that have been there. I want my lung removed and my Doc doesn't want to do it because its a 3B. He said I would still have cancer. So he doesn't want to do it. I see a Radiation specialist on Monday the 3rd of May.

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Welcome, Keli! I'm not in your situation, but I wanted to welcome you anyway.

Stage 3 is the most controversial when it comes to treatment. Even doctors armed with your scans and all the best information they can get don't all necessarily agree.

GRACE is a great place to post medical questions regarding lung cancer. The doctors there are lung cancer experts.

I'm sure you'll have responses here from others whose circumstances are more similar to yours. Again, welcome!

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Glad you found us. Welcome. I know this is really a tough diagnosis. Have you gotten a second opinion?

I agree, the above site is a great place to get an opinion from Dr. who treat lung cancer.

Keep us posted on how it is going.

Donna G

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Welcome-

You need to get a second opinion if you haven't already. Some doctors are more aggressive than others. A different chemo regimen may shrink the cancer enough that surgery is possible -- or there are drugs like Tarceva that may hold your cancer in check for a long time. Please go to Kasey's story -- her 4th opinion saved her life. I believe she just posted an update. If you read her profile you can see what she went through to be cancer free.

Keep reading and researching -- I know how hard this is with kids at home. Keep us posted on your progress.

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Welcome,

Sorry you have the need to be here but glad you found us. My dx was sclc, normal treatment is chemo followed by radiation. I had to have a surgical biopsy because they couldn't reach for a normal biopsy. Well I guess nobody told my surgeon that he was supposed to do a lobectomey if it was sclc, so he did that and took out about 12 lymph nodes! I think the ONC was shocked! Oh well! You've already gotten good advice! Good luck to you!

Dana

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Hi Keli!

There are a lot of folks here who canhelp to answer your questions. Not wanting to do surgery at that stage is probably standard, but as Ry suggested, it would be helpful to get a second opinion. Even if surgery isn't an option, there are other treatments your onc can pursue. You didn't mention what he/she has recommended next. I also second the notion to go over to www.cancergrace.org to read about your diagnosis and ask questions about treatment options. We have lots of folks here with your diagnosis who have done well with treatment.

Susan

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Keli, hang in there and keep with treatment. I was dx'd 3B in Oct 07. I had SIX chemos, carboplatin/taxol/avastin. I went into remission after the six plus I think two or three more maintenance Avastin. I hated Avastin and after six weeks on the maintenance, I chose to go off it. I got six more months of remission and it came back--I felt with a vengance altho the onc didn't want to say that. When it returned I went on Alimta. That was May 09. I was in remission again by Feb 10. Hopefully I will have a clear scan when I go for one May 4. Note I'm headed for the 3-yr survivor mark. So I had it, it came back and we beat it back again. Ask your oncologist about maintenance chemo. Lots of oncs are using it now for advanced lung cancers that show a positive response to initial chemo.

Judy in KW

P.S. By the way, I was not a candidate for surgery or radiation.

Judy in KW

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Welcome here Keli. You got so great advice already, don't really have much to add that hasn't already been said. I agree that a second opinion is a good idea. But even if, after getting that, you find surgery is still not an option, then look at the alternatives here. Glad you contacted Grace.

Keep us posted on what is going on.

Judy in MI

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Hello Keli,

I read your posting here and the one at GRACE. I send you a warm welcome.

Your concerns about your diagnosis may be very similar to my husband, Bill, who was treated for more than five years, and had a productive, upbeat, and very near-normal life.

Responding to you in a comparison is to let you know that whatever path your treatment might take, there is hope.

My husband was 74 when he was diagnosed, and the verdict was that he was inoperable. That might not be your case as some doctor might see otherwise for you.

Bill had concurrent radiation and chemo. That meant he had radiation every day (Mon.-Fri.) for 7 weeks, and chemotherapy once a week for 7 weeks.

The shrinkage in his tumor was over 50% and he was encouraged to go for many more regimens over the years in order to lengthen his survivorship. He told me that he had no regrets about anything, so I took that to mean he was OK with it all.

Today, there are so many more options for lung cancer diagnoses. For instance, they can test tumors for response or rejection to treatments - something to look into for a better outcome.

There are treatments, like Tarceva, which has now been approved for use in advanced cases. So, Keli, things are changing all the time.

We lived with hope and to this day, I still have that hope for others with lung cancer. Bill brainwashed me into "not giving up."

Barbara

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Welcome Keli,

I've been following this thread. Your appointment is scheduled for today and I look forward to reading an update from you soon.

Lots of wonderful survivors and co-survivors here to encourage and inspire you along this journey. Please keep us updated.

Hugs,

KatieB

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I had an appt with the radiologist today -- another CT and a pulminologist on Wed. also another Dr appt to get everything set for the start of radiation next week. I really feel confident with this Dr.

Overall still feel physically very good!

Thank you all so much for the support!!

You are all wonderful!! :D:D

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5/3/10 Met with the Radiology Lung Specialist on Monday. Stated he wanted me to go into a study he is in the process of working on. Set me up for a CT instead of using the PET to see if there was still Cancer in the Lymph nodes of my neck.

5/5/10 Had the CT -- No Cancer in the Lymph Nodes anymore YAY! So I chose to join the Study -- It is a 5 day radiation for 5 weeks. Higher than the "Standard doses". In the end its the same amount but in a shorter time-frame. He is stating he has a 49% survival at 2 yrs with this aggressive style of treatment.

Also saw a Pulminologist and she said I had "great lungs" I couldn't help but laugh at the irony.

5/7/10 Had a body mold and 4D CT scan. Even some tattos -- LOL

The second Lung specialist told me my tissue Histology is a thyroid Cancer -- but no Cancer in the Thyroid -- so they are still sticking with the NSCLC IIIB. It is so hard when even Mayo cant tell me exactly what kind I have -- shooting in the dark is a scary proposition.

Now I wait for a week and a half for a phone call to start and that is the hardest. With this stuff still growing I'm very nervous! They say they can kill all of the Cancer with this treatment -- That's all I am looking at -- not the rest of the feelings involved -- that everybody gets -- I'm sure -- when they are going to radiate your body.

So I will stop meandering and go.

Thank you!!!

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Hi Keli,

Well, that sounds like a plan -and a plan is good. When I spent my 6 weeks going daily for radiation, there were a few people doing it in an intense form for a much shorter time. They seemed to be doing fine. Hopefully, that was a cure for them as well.

Is the treatment heavy enough that you need to be secluded at all? A friend of a friend had her thyroid thoroughly zapped - her partner was instructed to not sleep in the same room for awhile! And some time after treatment ended, they were stopped at the border - seems the equipment identified her as "hot"! But it is a couple of years later and she is doing great - and has a pretty physical job and lifestyle.

I got my first tats for radiation - 5 new freckles (I have plenty naturally.) Radiation ended just a year ago, already.

Take care.

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Keli, wishing you luck on your treatment. I know about uncertainties. I never can conform to the norm with my cancer. But guess that's par for me generally speaking. Glad you got into that study. The onc sounds like he knows what he's doing and we need people like you to support advancing research. Keep us informed as to how you are doing.

Judy in KW

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The radiation will not be so much that when I leave I will not be able to be around others. I understand its fractions more than the standard.

I am a redhead so a few more freckles wont even be noticed LOL!

:D

Once again thank you for your support!! It really helps.

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