SCLC; are there any new developments?

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This topic contains 22 replies, has 8 voices, and was last updated by  Dr West 1 year, 10 months ago.

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June 11, 2012 at 2:32 pm  #11301    

sofyan

Dear Doctor
My brother was diagnosed a month ago with SCLC. He has just moved to another city hoping to find better options. He has just met his new oncologist last Friday. Of the many things they have talked about, one thing is stuck in mind. When he told his oncologist that he was willing to undergo any trials for new therapies, the doctor replied that he is conducting trials on NSCLC. He added that there has been no advances in treating SCLC for the past 21 years. This came as a shock, as you may have guessed. Reading about the prognosis for SCLC all over the Internet, and how quickly it kills patients is just overwhelming, and now we are told there are no breakthrough, developments, or much hope. Is this true!?
Thank you for your help.
Sofyan


brother diagnosed with LS SCLC. 5 weeks after diagnosis, now it is ES SCLC. Wondering about new breakthroughs in SCLC research. Sofyan

June 11, 2012 at 3:26 pm  #11303    

Christineleeds

Dear Sofyan
There is not as much research into sclc as into other cancers as there are less people now who have it so there is not so much incentive.you do not give a profile and say whether your brother is ext sclc or limited.We have a few people on this site who are living fulfilling lives several years on from dx.My husband is still golfing and holidaying despite his sclc relapsing .One learns to take what is on offer and celebrate each little victory over this terrible disease .I recommend you read some posts from warrior princess who is an inspiration to us all.
Good luck to your brother and kep hoping
Christine


Husband Philip dx 10/10 ltd SCLC.Cisplatin/epotiside with twice daily radiation 1/11 PCI 3/11.Pneumonitis .Progression 11/11 carbo/epotiside 1/12 Radiation 6/12.Very bad chest infection following rad which could not be controlled and SIADH.Died 8/12.Was very active and quite well for most of treatment up till the last week.

June 11, 2012 at 8:35 pm  #11309    

smokystar

Dear Sofyan,

My mother was just diagnosed with ES SCLC and we are investigating clinical trials – most are for NSCLC, but there are some promising ones for SCLC also. Here is some recent news for SCLC and some trials we are pursuing. While it is important to start treatment as soon as possible, many of the trials require that you NOT have started treatment first.

1. ImmunoGen – Carbostatin plus etopocide plus IMGN901 (lorvotuzumab mertansine) (Phase II)

http://clinicaltrials.gov/ct2/show/NCT01237678

2. Bristol Myers – Ipilimumab (Yervoy) Plus Etoposide and Platinum Therapy (Phase III)

http://www.clinicaltrials.gov/show/NCT01450761

3. Eli Lily – LY2510924 (Sunitinib) Plus Etoposide and Carboplatin (Phase II)

http://clinicaltrials.gov/ct2/show/NCT01439568

4. Ziopharm – Palifosfamide Plus Estoposide and Carboplatin (Phase III)

http://www.clinicaltrials.gov/ct2/show/study/NCT01555710?term=palifosfamide&rank=11

http://www.marketwatch.com/story/ziopharm-oncology-announces-dosing-of-first-patient-in-phase-3-study-of-palifosfamide-for-the-treatment-of-small-cell-lung-cancer-2012-06-11

Good luck to you!

smokystar


**************************************** 75 y/o Mother newly diagnosed ES SCLC in May 2012, mets to hip and groin lymph nodes, good health otherwise, former smoker quit 25 years ago, no treatment yet, hoping to participate in clinical trial

June 11, 2012 at 10:09 pm  #11319    

Dr West

It is true that we haven’t made much progress in SCLC in over a decade, but there have been some incremental improvements. And as smokystar mentioned, there are some interesting clinical trials that could lead to the next meaningful improvement. A decade ago, there was a lot more excitement around SCLC, while NSCLC was a field that many people were nihilistic about. Things can change.

-Dr. West


Howard (Jack) West, MD
Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

June 11, 2012 at 10:59 pm  #11323    

sofyan

Thanx for the kind replies.
He was diagnosed with a LS SCLC a month ago based on CT and biopsy. The new doctor ordered new PET and MRI scans and he is scheduled to have them this Thursday. He will get a chemo (not sure what drug will be used still) on Friday. His voice is making us more worried. It is has become very hoarse in the past 10 days and the doctor says it is because of the cancer. We are thinking that now it has spread all over the body! The doctor said the vocal cords maybe damaged now!
I’ll post the updated results on the weekend, once we know more.
Has anyone resorted to alternative therapies? It is very confusing to read all the info on the Internet. We are even considering going to Mexico to explore some of the procedures there, like sonophoto light therapies. We are just too desperate and still trying to deal with this issue.
I truly appreciate your kind words.
sofyan


brother diagnosed with LS SCLC. 5 weeks after diagnosis, now it is ES SCLC. Wondering about new breakthroughs in SCLC research. Sofyan

June 12, 2012 at 12:51 am  #11325    

certain spring

I understand the sense of despair. It seems unfair that there have been so few breakthroughs in SCLC recently. However we do have some GRACE members with SCLC who are doing very well.
However I would be wary of “alternative” therapies unless they are underpinned by good medical evidence. Especially when your brother is on chemotherapy, as various vitamins/herbal remedies can interfere with the action of the drugs. Always tell your doctor what you are taking, is the golden rule.
Don’t panic about the hoarse voice – that does not imply that the cancer has spread all over the body. Hoarseness is very common in lung cancer patients.
You have obviously caught up with smokystar:
http://cancergrace.org/lung/topic/ex-sclc-new-diagnosis/
On that thread, catdander provided some very useful links which will give you a helpful primer on SCLC, for example this post by Dr Gadgeel:
http://cancergrace.org/lung/2010/08/07/treatment-of-small-cell-lung-cancer/
If you would like to create a profile, as Christine suggested, here’s a guide:
http://cancergrace.org/topic/grace-site-tips-profile-bio-forum-signature


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

June 12, 2012 at 3:08 am  #11329    

Dr. Weiss

For more on hoarseness and lung cancer, see http://cancergrace.org/cancer-treatments/2011/04/16/hoarseness/


Jared Weiss, MD
Lead Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or University of North Carolina. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

June 12, 2012 at 8:15 pm  #11373    

Dr West

Everyone has their biases, and I am a conventionally trained oncologist who gives chemo for a living, but I don’t stand to gain or lose anything by your personal decision about what to do. I’m not selling anything to do.

I would say that the temptation to pursue alternative medicines is understandable in a desperate situation, but when there are viable, well tested treatment options, there is good reason to be worried that they will lead to worse outcomes at greater expense and inconvenience. I personally would be extraordinarily wary about treatments that thrive only by being under the radar: do you know of any truly reputable, valuable intervention that is unstudied, takes direct payment only, and has no evidence to support it except for the testimonials of a few zealots (when you don’t necessarily know about the other 99.9% who did extremely poorly? I think these practitioners prey on the desperation of people who are unwise enough to spend their money on a completely untested idea that no well-trained cancer expert would remotely consider.

By all means, you are welcome to your own opinion and do what you want, but remember that I don’t have a horse in this race. I just hate to think of people being suckered into spending lots of money on completely ineffective therapies.

-Dr. West


Howard (Jack) West, MD
Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

June 14, 2012 at 2:13 am  #11436    

warriorprincess

Hi,
Be careful what you read on the internet in terms of prognosis/ outcomes etc. Most of the information is quite old, and while things havent progressed all that much with SCLC, I dont think it is as bad as is often portrayed.

I’m 2 years on from diagnosis and still working full time (although I have flexible hours, to allow me to rest as I need it).

In terms of natural therapies, I would look at doing these once your brother has finished his first line of chemo (and possibly Prophylactic Cranial Irradiation). As someone else mentioned, the natural remedies can sometimes interfere with chemo, which has more proven outcomes.

I had 4 weeks between my first symptoms and starting treatment. Within those 4 weeks, I went from having a nasty cough to sounding like Darth Vader… wheezing, breathless, unable to breath lying down etc. Its a very nasty, fast disease! But at the same time, they had all disappeared by the end of the second day of chemo!
So, it can also be very responsive to chemo and symptoms can disappear very quickly.

If you dont feel confident with your oncologist, its better to look now for a second opinion (or second “style”), rather than sit it out with someone you dont like. you need to walk the journey with a doctor you trust.

Hang in there and stay positive.


*************************************************************************** Diagnosed ex-SCLC at 42y.o in June 2010. never smoker. 1st line carbo/etop. PCI Nov 2010. 2nd line CAV may 2011. severe hip/leg pain sept 2011. lung and spine radiation in hosp Nov 2011. 3rd line carbo/etop Jan 2012. progression march 2012. 4th line irinotecan. progression may 2012. 5th line carbo plus taxol

June 15, 2012 at 3:43 pm  #11477    

sofyan

Hi everyone
indeed..a very sad and most stressful day. I just talked to my brother and sister in law an hour ago.
Prognosis is bad.

my brother talked briefly to me; he was so angry, little tearful as well. My sister inlaw was not in any better.

As they both walked into the doctor’s room (now Seattle), he had a very gloomy look, attitude, and voice, and greeted them by saying he was sorry but he had bad news. He repeated his “sorry” as they left his room. regardless of how grim things look, to them, us, this meant basically that we already lost my brother! anyways, I always hated Friday’s appointments!! you see the doctor, and then life has to stop for the weekend, and then resume on Monday.

Could one of the doctors please tell me how bad things are, and is my brother at the end of his life!?

the results, from what I could gather, were as follows (taken yesterday, Thursday June 15th):

PET
overall impression
1. left suprahilar mass consistent with biopsy (taken in Wichita about 5 weeks ago), demonstrate extensive focal FDG avidity, max. SUV 10

2. metastatic FDG avidity left infrahilar metastatic node

3. diffuse osseous metastasis involving spine,pelvic bone, proximal aspect of right femur, bilateral ribs, left scapula. as described above, involvement of right femur @ high risk of pathologic fracture

4. no liver, lung, adrenal metastasis

5. postobstructive pneumonia involving the upper left lobe
-solid intaabdominal normal, no liver, adrenal leymphoma adenopathy; urinary bladder normal
-bones: no other lymphoma in other bones

MRI
Final result
1. no evidence of metastatic disease

2. mild diffuse paranchymal volume loss within expected for patients age

3. head/brain parenchyma: no intracranial mass, no infraction, no intracranial hemorrhage
- all looked ok in the brain in terms of volume, flow, etc.

Thank you all in advance.


brother diagnosed with LS SCLC. 5 weeks after diagnosis, now it is ES SCLC. Wondering about new breakthroughs in SCLC research. Sofyan

June 15, 2012 at 7:12 pm  #11482    

warriorprincess

the doctors will not be able to comment on the results of the scans. Its one of the rules of the forum.

SCLC is not a good diagnosis to get, and the prognosis is not good. But that doesnt necessarily mean that your brother is at the end of his life (in terms of only having weeks/ months to live).

Generally, people respond very well initially to chemo, although the SCLC does tend to come back.

But obviously its a big shock initially. Take the time that you all need to come to terms with the diagnosis. but then try to take a positive approach and face the future with confidence and live every day to the full. Hopefully you at least have several years to enjoy with one another.


*************************************************************************** Diagnosed ex-SCLC at 42y.o in June 2010. never smoker. 1st line carbo/etop. PCI Nov 2010. 2nd line CAV may 2011. severe hip/leg pain sept 2011. lung and spine radiation in hosp Nov 2011. 3rd line carbo/etop Jan 2012. progression march 2012. 4th line irinotecan. progression may 2012. 5th line carbo plus taxol

June 15, 2012 at 9:33 pm  #11489    

Dr West

warriorprincess is right that we can’t interpret scans, in part because they are just a summary of the images we can’t see, and because part of the overall interpretation is the context of what’s happening with the patient.

The scan shows disease that is extensively involving the skeleton, and it sounds from your description as if the extent of the the cancer in the chest may well be worse, too. This would represent progression compared to limited stage a month ago, and if he has been on treatment and demonstrated progression through it, that would unfortunately represent a situation in which I don’t think we could realistically be able to suggest that we have a treatment that would be effective, I’m sorry to say.

-Dr. West


Howard (Jack) West, MD
Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

June 17, 2012 at 3:46 am  #11515    

warriorprincess

Dr West, my reading of this thread is that he hasnt actually started chemo yet.
He had a month between the first scan and 2nd scan for a second opinion, but I dont think there was any treatment during that time. Would that change your perception of his situation?

My feeling would be that you need to start treatment as soon as possible. SCLC is very aggressive, and best to get on chemo asap, to get the disease under control, if possible.
I went from no symptoms to not being able to breathe lying down in around 4 weeks. (but chemo reversed all symptoms in first round. ). So, you can see why I’m a bit concerned that its now 5 weeks since the biopsy was done. This is not the sort of disease to think too much about before you start treatment!

Apart from managing the progression, it will also give him the feeling of being more “in control” and doing something proactive, which I think is helpful in managing the emotions surrounding diagnosis.


*************************************************************************** Diagnosed ex-SCLC at 42y.o in June 2010. never smoker. 1st line carbo/etop. PCI Nov 2010. 2nd line CAV may 2011. severe hip/leg pain sept 2011. lung and spine radiation in hosp Nov 2011. 3rd line carbo/etop Jan 2012. progression march 2012. 4th line irinotecan. progression may 2012. 5th line carbo plus taxol

June 17, 2012 at 7:09 am  #11516    

certain spring

I think that is right – sofyan’s brother was only diagnosed a month ago, according to the original post on June 11th.
Sofyan, sorry to bother you with questions at such a difficult time, but are we correct in thinking your brother has not had any chemotherapy?


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

June 17, 2012 at 7:27 am  #11518    

sofyan

yes, it is right. They put him on an 8 hours chemo just FRIDAY 16th June. This is his first chemo. The doctor put him on irinotecan+cisplatin and told him this first session is going to be long, but next Friday it will be 3-4 hours only.

He says he feels he is ok, but now he has hick-ups, which is a reaction to the chemicals, as he told me. hoarseness and hickups…! he says he feels very well, and was getting ready to move to another apartment, so he seemed doing well.

I was looking up the internet. I asked him to schedule an appointment with another oncologist, an immunotherapist/stem cell specialist. I believe this is eventually will be the way to go, if possible. chemo and radiation can serve you up to a point, but attacking the root cause could be the answer.

just a question to doctors here, if you do not mind: if you inject a differentiated cell (say a liver cell) into another tissue in the same body, say a lung, would the autoimmune system attack it? I am getting more interested in the field and was thinking of how to approach the problem.

thanx.


brother diagnosed with LS SCLC. 5 weeks after diagnosis, now it is ES SCLC. Wondering about new breakthroughs in SCLC research. Sofyan

June 17, 2012 at 3:16 pm  #11525    

certain spring

I am so glad to hear your brother is getting treatment at last. May we know what part of the world you are in?


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

June 17, 2012 at 7:09 pm  #11529    

Dr West

Yes, unfortunately, it’s not surprising that he has shown progression without chemotherapy over the last month. SCLC tends to progress rapidly without chemotherapy. The fact that he hasn’t progressed while on chemotherapy is actually favorable, since it suggests that there is still very good reason to be hopeful that chemotherapy will help.

I can’t speculate about injecting other cells into another person’s body. It’s not a well studied approach, and I would have to say that I wouldn’t consider it a remotely appealing or appropriate treatment for SCLC today, except as part of a properly conducted clinical trial.

-Dr. West


Howard (Jack) West, MD
Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

June 18, 2012 at 6:12 am  #11536    

catdander forum moderator

Dr. West, Did you mean to say you would consider it appealing or you would not consider it appealing except as part of a properly conducted clinical trial?

Sofyan, I’m glad your brother is getting started on treatment and look forward to good news.
Also I’m going to ask a favor of you. Since you have become a member of the community it would benefit the doctors if you wrote a “signature” for the bottom of your posts. All you need to do is click on your avatar or user name in one of your post. That will lead you to your “Grace profile” (note that going to your profile from the top on the page will take you to the “Word Press profile” and not what you need). On your Grace profile page you can add a “signature” that will show up at the bottom of your posts and give the reader a short history from which to draw context to your post. Look around at others’ signatures to get an idea of what makes since to you and thanks and welcome again.
I hope for all the best for your brother,
Janine

June 18, 2012 at 9:43 am  #11540    

sofyan

Hello
I live in the heart of the Arabian Desert (Emirates). My brother works for Boeing in Seattle. He is getting medical care there right now. I will be there on June 28th, once the semester is over.

Dr. West, from my understanding, he should get PCI (prophylactic cranial irradition) soon after he starts chemo, or not?

thanx
sofyan


brother diagnosed with LS SCLC. 5 weeks after diagnosis, now it is ES SCLC. Wondering about new breakthroughs in SCLC research. Sofyan

June 18, 2012 at 4:32 pm  #11555    

certain spring

I believe PCI is usually done after chemotherapy, assuming there’s been a good response to treatment. You might find these posts useful:
http://cancergrace.org/lung/2007/06/19/pci-for-ed-sclc/
http://cancergrace.org/radiation/2011/04/29/dr-minesh-mehta-radiation-oncologist-on-prevention-treatment-of-brain-metastases/
Thanks for doing the profile. I’d just like to point out to the doctors, in case the information is missed, that your brother is being treated in Seattle and has just started first-line cisplatin/irinotecan. I hope he does well on this combination. Best wishes.


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

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