Liver Biopsy -Small Cell Lung Cancer that has mets in Liver and bones-Very Scared

My Doctor called last night he said I have small cell malignant lung cancer extensive stage that has spread to my liver and three places in my bones. He said Chemo is the only treatment. My goodness this is the worst lung cancer I can get. He said no targeted treatments are available. He wants me in chemo next week. He said I could do this in my area. I feel like I am starting all over again. Any direction, any type of encouragment, any ideas...I feel like I am in a dream a very bad dream. Thank you Kym

28 Replies

oldestnewest
  • Oh, Kym. I'm sorry.

    I am no expert on small cell. I do understand that even serious cases usually respond really well to the first line of chemo treatment. You've said you are in pretty good health otherwise, so the odds are good that you will weather chemo and the cancer will have a big dent knocked in it.

    Once you have your first treatments underway, you can think about whether you want to pursue a clinical trial for your second line of treatment. Immunotherapy for small cell has not been FDA approved yet, but it is listed as second line treatment in the National Comprehensive Cancer Network guidelines for treatment, so you should be able to persuade your health insurance plan to cover it. There are some promising new approaches to combinations of drugs being tested in trials, focusing on overcoming resistance to chemo. You are already working with Dana Farber so they will be the place to start. All the clinical trials for SCLC I've heard about are being done as second line treatment.

    Chemo is absolutely your best treatment right now. Sending you all best wishes that all the appointment-making stuff goes smoothly for you today.

  • Thank you you said there are some clinical trials for SCLC, I have a question to sign up for a clinical trial does your insurance have to approve it? And it there no FDA approved treatment because of the type it is or less folks get it?

  • Kym,

    Sorry I didn't respond sooner.

    Most clinical trials are a partnership between the sponsor of the trial and your health insurance. Usually the sponsor pays for anything special that you wouldn't get as a standard part of treatment, such as experimental drugs and special tests. Your insurance pays for things like scans you would have been getting any way. The medical facility conducting the trial has to be in-network, however. Here is more information:

    cancer.gov/about-cancer/tre...

    FDA approval is an involved process. Companies have to conduct trials, the trials have to be successful at proving what they are trying to prove, and there are hearings to evaluate the data collected during a trial. I attended one such hearing to give a statement about my experience on an experimental drug (I was in a clinical trial), and the FDA goes over the data presented by the drug company very carefully. My guess is that the drug company has not yet applied for a hearing to extend approval for small cell cancer. Perhaps they are collecting more data first. The NCCN recommendation means that even without FDA approval, a doctor can probably talk an insurance company into paying for immunotherapy for a small cell patient.

  • I was lucky enough to be #2 on a new clinical trial starting Wednesday. I am not sure if I will get the placebo or Atezolizumab. I am hoping I am the one who gets it. Actually I am praying I will. I will also be taking Carboplatin and Etoposide along with this. Three days on, three weeks off then start again for 4 cycles. My new Oncologist working with me now locally (Still involved with Dana-Farber) is more personable and easier to understand. I was finally told I have stage IV Extensive Small Cell lung cancer. They say it has spread to three parts of my liver and one place in my neck (C-6) my right femur bone and my left pelvic. No place else of yet. Having another Baseline CT this morning for the study so we will see where it has gone again. I know it is in my lymph nodes in my right upper chest, and surrounding my 3cm tumor in my upper left lung. I am hoping I have the test postive for (Anti-PD-L1 antibody) from what I understand this is what folks with non small cell have and why the Atezolizumab works. This is Phase 1/111 Study with La Roche LTD. So I am so scared but physch that I may be chosen through this radom process to receive the drug. I also was told I may qualify for radiation and other trials. Found out my white blood cells were a little high only 1 point above the range, otherwise I am super healthly except for my demons that want to multipy in my body. They are sure I did not have this in October, I was diagnosed on Nov 11 2016. I think I may of it it longer, I started to have right hip pain in April and was treated for bursitis, however they are saying it was cancer. I have a genetic preposition for bone marrow issues, tested long ago. So I am thinking maybe there are two cancers not one. But again this is the geeky science side of me who studies genetics so I maybe totally off. Either way please say a prayer for me that I can get this drug. I so need it to live.

  • Kym,

    I will certainly pray for you.

    So glad you got into the trial, it sounds hopeful. You deserve some good news.

    Hugs.

  • Kym,

    I'm proud of you for signing up for a clinical trial for your first line of treatment! Even if you are randomized to the placebo, you are going to be closely and carefully followed - you will get the best of care.

    Your local oncologist must be a very good doctor if he/she works with Dana-Farber on trials.

    Thank you for sharing your news!

    Anita

  • Well got a call yesterday and they cancelled my chemo till next week. And then in my records it stated I had fibromylagia. I explained that I was given that label but all my tests never showed any inflammation. So now the trail has to be cancelled till next week. More test, more medical records. I was heartbroken, I wanted to start this week, it was so important, because of how agressive this cancer is. Then I had a another CT Scan and had allergic reaction to the dye yesterday. I will get chemo but can not get it before the trial. Lord I hope this has not spread more.

  • First, my profound gratitude to you for committing to this trial. I am alive today because someone stepped forward and participated in a trial. I can't thank them but I can honor them by expressing my thanks to you.

    Second, very sorry for this setback. The best I know from what I've read is that sclc responds very quickly to treatment once its begun. I send hope for a complete response to treatment. I will write again to answer your question about what to expect but I have to run right now.

  • Thank you Denzie, I need this first line treatment to help me survive. But if I do not get it I will keep trying. I want to give back and help others. Thank you again for your kind words.

  • my huabsand has also SCLC- ext, he's on a clinical trial

    clinicaltrials.gov/ct2/show...

    Your DR should have told you there are clinical trials for SCLC for 1st line treatment!

    keynote 158 I think it's calles. My husband was not eligible for it as he already had chemo before. But you could be. Nivolumab works heaps better than chemo and no side effects.

    the trial runs as Nivolumab as monotherapy or nivolumab + ipilomumab as combo. There's a study just been published with good results. So it's not true at all that chemo would be the only option, it's certainly the easiest for the DRs, not paperwork, nothing, but you need to be really persistent otherwise they won't bother even mentioning to you the other alternatives

  • Thank you I will ask for this trial for sure.

  • I am the trial starting this Wednesday, thank you not sure if it is the same or not.

  • Both of the prior responses have given you really great info. All I can add to it is my hope that you respond very well. Please do inquire about trials. Put a call into the oncologist and another to the lung cancer nurse navigator.

  • I am going to be treated closer to home they work with Dana Farber so I am hoping the new oncologist here in southern maine will work with me on this. I already spoke to the Nurse Coordinator about this. I am praying now this can work.

  • I've found 3 clinical trials in Maine/Massachusetts for advanced sclc. #1 & #4 are not appropriate. Two require prior treatment. The third is a phase one trial that requires you have no prior treatment. Hope this helps.

    clinicaltrials.gov/ct2/resu...

  • I pray you do well with the treatments. God bless you.

  • Thank you Ruthie I am still in shock, I thought I did everything right, I guess I did not. Now I can only pray for a miracle or a clincial trial that will help me.

  • I am so sorry. I know that your doctors words were hard to take in so give your some a little bit of time to digest them, then begin the fight. As others have already said -speak to your doctor about other options i.e. Immunitherapy, clinical trials, etc. that you can do in addition to chemo. Sending you a big hug.

  • Thank you so much, I am still in shock but I will push the other options for sure.

  • Hi kym105,

    A diagnosis of small cell I certainly grim I too have it. But in some ways I think small cell may not be any worse than the other types after you get past stats. Anyway I'm sorry to hear about your diagnosis and my heart goes out to you. Also know that I'm right here in the same boat and we will continue up the river,keep me posted.

    Thoughts and prayers,

    RW

  • Thank you RW I am so scared today is my first chemo appt. At least that is what the nurse coordinator stated. I am going to get by these stats. Any advise or tips on dealing with chemo?

    Thank you Kym

  • Hi kym105,

    I have completed 1 round of chemo so far and have not had any really bad side effects. I hope you tolerate it well to.

    Good luck,

    RW

  • Thank you RW I need your support for sure.

  • Kym,

    Hard - an allergic reaction and postponing treatment. I am so sorry! However, they are being cautious to protect you...you want everything to be just right before you start treatment.

    But, in the interest of full disclosure, I would be frustrated and ready to go too. Once you get your mind set on something, yesterday isn't soon enough, right?

    This too shall pass......at least that's what they say.

  • So hard though because my small cell lung cancer is so agressive. I wonder how long I have had it and how much it has traveled since I was first diagnosis Nov 11. I know they are being cautious, but it is maddening to wait.

  • I go today, they said I am now in the trial. I am starting all today including chemo. But I do not want to jump for joy yet. When I am having infusions I will pray it is the drug and not the placebo. I will update everyone. I am scared but brave and positive....Thank you Peggy

  • Kym,

    I understand your craving to have answers about where this disease came from and what it is doing now. I would be surprised if you didn't wonder about those things, and I would be surprised if you weren't struggling with this wait. That all makes complete sense to me. And I am sorry you have to endure it, like so many members of our community have done. It just is miserable and frustrating. I am so sorry.

    I hope the support of everyone here, and the knowledge that we all care is some kind of comfort. You will soon be under treatment and working hard at fighting this with both fists - I know that will be a relief to you and we will want to share that with you too.

    Thinking of you, and of everyone here. You are such inspiring souls. Thank you.

  • Yes so frustrating, wondering why they miss it, even though I was being screen and watch closely. Honestly I understand that CT's are using pre-screening for lung cancers. I wish they could use the PET Scan instead as it seems to be the golden key to finding cancers. Too late for me now but my only hope with all the new trials and advances someting will come up for me.

You may also like...