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sclc extensive - dilema - has anyone been there?

kimbee1218
Posts: 29
Joined: Jun 2010

Confused on what to do about 2nd opinion. Just went today with my Dad to his Pulmonary Dr. Just as he thought it is sclc that has spread throughout the lymph nodes in his chest. Tumor is 5cm (2wks ago) and partially blocking main airway. He has not energy, hard time breathing and constant cough. Sloan Kettering in NYC appt for 2nd opinion is not until 7/20. They say go to local onocologist and see if they think he can wait that long. If not, they say start whatever treatment they suggest. The problem with this is that if they start with radiation - it may push his NYC appt further out. The waiting is the worse part right now. I know it will get harder than just waiting. We don't know if he has 6 months, 1 yr or 2 wks. How do you tell how fast the sclc grows? Has anyone been in similar situation? I would appreciate any input, this is so confusing.

deb_needhope
Posts: 38
Joined: Jun 2010

Sorry to hear about your Dad.

My Mom just got diagnosed smlc extensive too. She has a tumor in her lung, liver and brain. We've been told that it's a fast growing cancer but reacts quickly to chemo so we've been pushing to start the chemo right away. She starts it on Monday, 6/21 on Carboplatin? We were told that the chemo works for all the tumors. We will do radiation later.

This is all very confusing and overwhelming to us too. My sister and I have been researching everything.. Waiting for all the tests to come back and get confirmed so we could move to chemo seemed to take forever..

Take care.. Deb

kimbee1218
Posts: 29
Joined: Jun 2010

Thanks for your help. How did they know that it was in her brain. The Dr told me that he couldn't tell on the PET Scan because the brain normally lights up with activity. Did she have an MRI.

deb_needhope
Posts: 38
Joined: Jun 2010

Hi Kim, The CT Scan showed all the tumors and size of each. The following week, they followed up with a biopsy and MRI. For some reason, they not going to do a PET Scan.. Deb.

NKY_Dave
Posts: 12
Joined: Jun 2010

Kimbee, don't wait - Start treatment as soon as possible. Chemo with one of the platinum drugs like Cisplatin or Carboplatin along with Etoposide (VP-16) in conjunction with radiation therapy is what is normally perscribed. My wife was diagnosed with sclc in November last year. It is extremely scary because the statistics are not good - remember your dad is a statistic of 1. Another thing that my wife's oncologist reminded us of is that the statistics are based upon a 5 year period and that many advances have been made with this cancer in the past 2 years. These new results will not show up in the statistics due to this fact. You can still get the 2nd opinion but just remember that this cancer is extremely agressive and will grow as well as move to other places quickly. You can't afford to wait!

Good luck and may God Bless You as he has my wife. She is now in remission since April.

kimbee1218
Posts: 29
Joined: Jun 2010

Thanks for the info. Did they start with just chemo? If so, how long before they started the radiation after the chemo? Did your wife have it in her lymph nodes too? I am wondering how long after the first visit that they will start. It really helps to talk to someone that has been there. I am really happy that your wife is in remission...that is great and also gives some hope.

NKY_Dave
Posts: 12
Joined: Jun 2010

They started with the Chemo. She did 3 cycles of that before the radiation began. The last cycle of chemo occurred during the first week of radiation. The oncologist had a CT scan with contrast done after 2 cycles. The tumor had shrunk by over 85% at that time. This type of cancer is extremely susceptible to chemo so it is imperative that this begin as quickly as possible. Some doctors want to start the radiation first while others do them simultaneously. From my research, the chemo is extremely important to get going quickly. Speaking from only the experience with my wife, the chemo and radiation together would have been extremely difficult for her to handle physically had they occurred simultaneously. She probably could have handled it, but I would worry about how weak she would have been.

You should take my opinion with a grain of salt as I'm an engineer and not a doctor. I do have some experience at scientific research and forming an opinion based upon statistics. For us it came down to prayer and following where we felt God was leading us.

kimbee1218
Posts: 29
Joined: Jun 2010

I think it is good to hear about different situations, if nothing else - it helps for me to think of good questions to ask - things that I may not have thought of on my own. I am concerned about getting the 2nd opinion and equally about getting his treatment going. It would be good if they could do the chemo and have the 2nd opinion appointment come before radiation has to start. Both, because I know he is going to be weak for travel and that the radiation is daily, so he cannot be gone for long. I have no idea how long the chemo takes or how long the treatment last. How long is a cycle of chemo? I really know nothing about this whole situation. I am just so afraid of making the wrong decision, you don't get a do over. I actually have an analytical personality, so I tend to over think things normally anyways. I really do appreciate your sharing in your personal experience. I pray everyday and will continue to do so. Thank you for your help, I will include your wife in my prayers.

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

Chemo by IV usually takes 3 to 4 hrs per session (day) but first treatment is about 6 hrs.
Start chemo treatment now then follow with rads.

kimbee1218
Posts: 29
Joined: Jun 2010

Does it matter how long you wait to do rad after you do chemo? Is 4 sessions the normal amount of sessions? Thank you for your help.

medi_2's picture
medi_2
Posts: 507
Joined: Aug 2009

sclc does move quickly. I was already doing chemo and radiation (simultaneously)less than 2 weeks after my diagnosis. The Doc put me on the fast track for sure. My tumor was caught before it spread. He said if we hadn't have found it, it would have begun spreading in about a month. Just some crazy luck I guess, but I'm fine so far...
Good luck to you!
Medi

kimbee1218
Posts: 29
Joined: Jun 2010

Sounds like you had a great Dr. Glad to here you are fine. Thanks for the help.
Kim

beccaj
Posts: 1
Joined: Jun 2010

I was diagnosed March 5, 2010 with sclc. I had a lump appear under my right arm so I saw my Primary Care Doctor, She immediately sceduled me a mamogram to take place only a few days later, The mamogram clearly showed this tumor and also a large one in my breast that I was not yet aware of. When the test results came back I was very schocked to be diagnosed with lung cancer instead of breast cancer which I had come to expect since my mamogram. Then I was sent that very day to see an oncologist. The next two weeks were filled with lots of tests. None of the test done showed any sign of the cancer actually in my lungs. I finally began to receive chemo the third week. In the mean time the tumor in my breast which I had not even been aware of grew astoundingly fast, by the first day of chemo my breast was easily twice the size of normal, red, hot and exterme;y painful. I have now taken 6 rounds of chemo 3 days with a 21 day break between each round as well as 28 radiation treatments done simultaneously with the chemo. I am now scheduled for a mastectomy and the removal of the affected lymph nodes since there is still cancer present. I have a wonderful family who try so hard to be supportive, like someone else said we are going through this together, but no one really knows what I am feeling. The mastectomy will remove the cancer from my body and I will be cancer free, or will I? Don't get me wrong, I am happy that I will be cancer free, and extermely greatful to my oncology team for the work they have done to get me to this point. My doctor told me that my cancer will return. I feel like my life is a time bomb and I don't know how to deal with this.

kimbee1218
Posts: 29
Joined: Jun 2010

This is all so confusing. Today we went to the onocolgists and they say my Dad has NSCLC rather than SCLC that the pulmonary Dr saw during the bronchoscopy. What do you believe? If they start treatment and it is SCLC, he will probably not last through the treatments. It sounds like your Dr made sure that things happened quickly. Did you ever consider a 2nd opinion. This is what we are struggling with now. It is hard making sure that you make the right decision. It sounds like good news that they are even doing surgery. I wish you well. Let me know how things are going.

Kim

cobra1122's picture
cobra1122
Posts: 245
Joined: Jul 2009

I realize that waiting can drive you crazy,but if your not comfortable put things on hold til you get the second opinion.I was diagnosised with stage 4 lung cancer in 2008, although I have a complicated health status. I was diagnosised with SCLC in my left lung and NSCLC in my right lung and lymphs. Went thro chemo as a pallative measure had to stop because of side effects, but it bought me more time.
Waiting is never easy, but your only talking less than 3 weeks,most of the time that isn't long at all, but everyone must feel comfortable to make this time as stress free as can be. No one can tell how fast because everyone is different, I have out lived every prognosis they have given me. My wife,kids,and grandkids don't think of time,we just live for today,no one was granted tomorrow.
We keep a positive attitude and support system going to keep us sane, it helps. I am currently on Hospice,my cancer has spread to bone and brain, I only have less than 30% of my heart working, I have suffered a stroke, I have early onset of Altzhiemers and Parkinsons, but I refuse to quite. I want quality of life, no quanity I am only 50yrs old.
You need to be positive for your dad, and help him fight for everything he has coming, just because he has cancer doesn't mean he is dead,so don't let the Doc treat him that way. Make them explain if you don't understand,anything going on you need to know why.
Our Prayers and Best Wishes to Your Dad,You,Your Family and Everyone,
Dan (cobra1122) and Margi Harmon

kimbee1218
Posts: 29
Joined: Jun 2010

Dan,
Thanks for taking time to try to help someone when you have so much going on in your own life. If we only had more people that thought and felt like you do- it would be a better place to live. The people on this site have helped so much. I love hearing about all of you that have beaten the odds and I feel my Dad can do the same. My thoughts and prayers are with you and your family. I wish you the best. Thanks again.

Kim

mdetri
Posts: 1
Joined: Jun 2010

Hi everyone, my brother has refractory sclc which responded well to etopicide and cisplatin after 2 rounds. but after four rounds it stopped responding. he has tumors in his lungs, liver, lymph nodes and now they have increased in his liver and appear in his femor. He had been complaining of leg pain, but not until his fourth round did we have an MRI of the leg which reveals why. (his initial pet scan in March didn't reveal any activity in the leg) His docs at MSK aren't giving up, but are less optimistic. They've told him to put together a will if he doesn't have one. In the meantime, they're going to do radiation on the leg, and switch him to another chemo regimen (CAV). They're also going to image his other leg which is beginning to have pain and his brain because he's starting to get headaches. I asked about clinical trials for sclc, but there don't appear to be many and there aren't any he qualifies for at msk. does anyone else have experience with clinical trials? why are there so few for sclc and more for nsclc? do i get a second and third opinion now? what does that entail? re-testing? or just getting records to another place? my brother is only 47 and while we trust his docs, we just can't help but feel if there is something we are missing? i'm so scared. i'm mainly the one in charge of this whole process, his home life is a real mess, with his wife and kid not providing much support, it's as if they've been in denial since he got diagnosed back in march of this year. how do i make sure i've done everything, i mean, i'm willing to do anything!!! thx. for reading...maryann

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

Im very sorry to hear of your spouses difficult battle and the latest news. You have come to right web site for cancer support and direction

Your encouraged to get 2nd opinion as its a good rule for most everyone. MSK is one of the top cancer treatment centers in country FYI. Certainly records need to be forwarded to new med team and center and he may need to re do some tests.

For Clinical Trials;
I used the site below which is the National Cancer Institute site for clinical trials
http://www.cancer.gov/search/SearchClinicalTrials.aspx?protocolsearchid=7884465

This tool searches NCI's list of 8,000+ clinical trials now accepting participants,
I put in "lung small cell" for all active trials for all stages for entire country

Cancer Type/Condition: Lung cancer, small cell
Country: U.S.A.
Trial Status: Active
Added in last 30 days?: Yes

see link below for results
http://www.cancer.gov/search/ResultsClinicalTrials.aspx?protocolsearchid=7884472

I looked over the 11 trials the search returned but trial #2 was the one that might relate, the others were related to smoking, behavior, training and so forth

Clinical Trial Questions?

Get Help:

1-800-4-CANCER

New types of treatment are being tested in clinical trials.

Information about clinical trials is available from the NCI Web site.

Patients may want to think about taking part in a clinical trial.

For some patients, taking part in a clinical trial may be the best treatment choice. Clinical trials are part of the cancer research process. Clinical trials are done to find out if new cancer treatments are safe and effective or better than the standard treatment.

Many of today's standard treatments for cancer are based on earlier clinical trials. Patients who take part in a clinical trial may receive the standard treatment or be among the first to receive a new treatment.

Patients who take part in clinical trials also help improve the way cancer will be treated in the future. Even when clinical trials do not lead to effective new treatments, they often answer important questions and help move research forward.

Patients can enter clinical trials before, during, or after starting their cancer treatment.

Some clinical trials only include patients who have not yet received treatment. Other trials test treatments for patients whose cancer has not gotten better. There are also clinical trials that test new ways to stop cancer from recurring (coming back) or reduce the side effects of cancer treatment.

Clinical trials are taking place in many parts of the country. See the Treatment Options section that follows for links to current treatment clinical trials. These have been retrieved from NCI's listing of clinical trials.

kimbee1218
Posts: 29
Joined: Jun 2010

Maryann

I am taking my Dad to Sloan Kettering for 2nd opinion and all that they needed was slides from his bronchoscopy done at home and they do their own pathology testing. They also want the actual films from scans so that they can interpet themselves. He has not had to do any more testing and I think it is worth the 2nd look. Good luck! Kim

sclc2010
Posts: 3
Joined: Jul 2010

I am 61 years old with SCLC, extensive, diagnosed 4/20/10. However, I am fortunate enough that when it was found it was still contained within the chest area. I did qualify for one of the clinical trials showing on the NCI web site for chemo-naive patients.

During a recent hospital stay for Percarditis, they did a routine chest scan for blood clots and we learned that my primary tumor had shrunk by 50% with only two rounds of the clinical trial drugs. Next week will complete my round 3 and I am scheduled for a follow-up scan 7/30 which will measure and or document 0 tumors where they once were.

Everything I have read reiterates that if you have SCLC, clinical trials are the best option. I will start standard of care chemo on 8/1 with the Etoposide and Carboplatin.

Good luck and will keep you in my prayers.

DeWitt
Posts: 2
Joined: Jun 2010

I totally concur with the effort to get into clinical trials, particularly if you're diagnosed with SCLC. I also suggest getting into a lung cancer support group. As you may know, there's a prevailing stigma with lung cancer, and finding a good support group may be diificult. But keep trying.

DeWitt
Posts: 2
Joined: Jun 2010

I totally concur with the effort to get into clinical trials, particularly if you're diagnosed with SCLC. I also suggest getting into a lung cancer support group. As you may know, there's a prevailing stigma with lung cancer, and finding a good support group may be diificult. But keep trying.

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

could you provide the exact link to trial and other details on where its being offered and qualifications? thanks

i know its on National Cancer Institute site it shows
Results for 38 sclc trials on http://www.cancer.gov/search/results.aspx

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007
sclc2010
Posts: 3
Joined: Jul 2010

Here is the link on NCI for the clinical trial I am participating in. Hope that helps in your search of the clinical trials. Currently the participating facilities are in GA and AL.

http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=638352&version=HealthProfessional&protocolsearchid=8004694

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