Extensive Small Cell Lung Cancer - 1265669

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niaqre1
Extensive Small Cell Lung Cancer - 1265669

Hi everybody. I am new in this website. My husband had diagnosed with Extensive Small Cell Lung Cancer.
with 9 months to live. He will get 6 cycles for chemotherapy ( Etopside and Cisplatin ) and he done 2 rounds already. The Doctor said there is no cure for small cell lung cancer. Much said just put your affairs in order.
I want to know, is there anything that we can do after the 6 cycles done?? Is there any treatment out there (clinical trial ) is going on for small cell lung cancer?? I really need help or information about it. the very update information about Extensive Small Cell Lung Cancer.

Thank you
Nia

JimC
Reply To: Extensive Small Cell Lung Cancer

Hi Nia,

I am sorry to hear of your husband's diagnosis. Please understand that although his doctor is correct, that extensive stage small cell lung cancer is not curable, it is treatable and half of the patients do better than the median survival statistics he cited.

You may want to start by reading Dr. Gadgeel's posts Introduction to Small Cell Lung Cancer and Treatment of Small Cell Lung Cancer which can be found here:

http://cancergrace.org/lung/2010/08/03/intro-to-sclcref-lib/
http://cancergrace.org/lung/2010/08/07/treatment-of-small-cell-lung-cancer/

After reviewing those posts, please let us know if you have further questions.

Small cell lung cancer tends to respond well to chemotherapy, and I hope that is the case for your husband.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

Dr West
Reply To: Extensive Small Cell Lung Cancer

I'm sorry about your husband's diagnosis, but I'd like to start by saying that the 9 month number is a general estimate and not a hard and fast number. 9 months is a point at which about half of the patients with extensive stage SCLC are alive, and half have died, which means that there is a very real chance of living beyond that (though there is also a risk of falling short of that number).

The standard approach is to pursue 4-6 cycles of chemo and then consider radiation to the brain (prophylactic cranial irradiation) if it hasn't already been given, and recently there is some evidence to support considering radiation to residual disease in the chest. However, these are not mandates as much as options that are sometimes favored depending on the specific situation. Additional chemo as a maintenance therapy beyond 4-6 cycles has not been shown to improve survival and is not a typically favored approach.

There are some trials being done in SCLC -- the highest probability of finding a relevant one would be to get an opinion at a larger cancer center in your region and/or see a specialist in thoracic oncology (often at the larger cancer centers, especially academic centers).

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

niaqre1
Thank you for your reply Jim

Thank you for your reply Jim and Dr West.

Im sorry for my late reply. Its been a long week for me. My husband 3rd cycle being done last week. and it is become so tough and rough for him. I don't know how to help him. I cant take away the pain, I cant take away the frustration. all I can do is be there and its very helpless feeling.

Dr West, what kind of clinical trial that recently they do?? I heard about PARP Inhibitors ( Immunotherapy in lung cancer for SCLC ) is that the name of the trial? If yes..... could you give me more information about it? I want to ask to my husband doctor when we go visit again.

I still looking for answers, I can not stop thinking about it and it has been laid heavy on my heart. I do not know enough about science to figure this out and researching it has gotten me nowhere.
If you can tell me to figure this out? please

Thank you so much
Nia

JimC
Hi Nia,

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

niaqre1
Thank you so much for quick

Thank you so much for quick reply Jim.
It seems that my husband and me have hope. will check with his doctor in the next visit

Nia

niaqre1
Hi Jim.....or anybody i have

Hi Jim.....or anybody i have questions

My husband now have swallowed body, his legs swallowed, his belly swallowed like pregnant woman.
He has constipation since done the 3rd cycle last week. Is that normal ??

i gave him polyethlene Glycol Stool Softner. but it does not work. He still cant use bathroom.

Is it normal belly become so big like that?
anybody have the same experience same situation and condition?

thank you for your answer
Nia

JimC
Hi Nia,

Hi Nia,

I'm sorry to hear your husband is having these difficulties. Constipation and bloating can be caused by a bowel obstruction, or by chemo or other medications. It is also possible for it to indicate progression of cancer to the abdomen, as Dr. Pinder described:

"Spread of cancer to the abdomen can cause abdominal pain and bloating. It can predispose to a bowel obstruction or kink, which causes further bloating, nausea and lack of bowel movements. Sometimes the cancer in the abdomen can cause fluid to build up - this can cause a significant increase in the bloating fairly quickly. Your doctor may be trying to rule out one of these things with the CT scan.

Since you just started chemotherapy, I think it is too soon to say whether the cancer is responding. Although your symptoms sound very difficult, I think it is reasonable to give the chemotherapy a chance to work and to investigate with a CT scan. If fluid has built up, an office procedure to drain the fluid (paracentesis) may make you feel hugely better." - http://cancergrace.org/forums/index.php?topic=6464.msg45110#msg45110

The best course would be to discuss your husband's symptoms with his doctor.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

Dr West
It certainly sounds like he's

It certainly sounds like he's constipated, but having edema (fluid in the soft tissues of the body, such as the legs or wherever gravity pulls it) is also a common symptom of being sick from just about anything -- including cancer, a bad burn, infection, etc. His own doctors would know better, but I'm afraid it sounds like he may be doing so poorly in part just because the cancer is progressing, which causes many problems that may not be readily reversible with any intervention.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

Dr West
It certainly sounds like he's

It certainly sounds like he's constipated, but having edema (fluid in the soft tissues of the body, such as the legs or wherever gravity pulls it) is also a common symptom of being sick from just about anything -- including cancer, a bad burn, infection, etc. His own doctors would know better, but I'm afraid it sounds like he may be doing so poorly in part just because the cancer is progressing, which causes many problems that may not be readily reversible with any intervention.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

niaqre1
Hello everybody....how are

Hello everybody....how are you? Its me again with questions i hope yall dont mind.

After fight very hard and pray alot, my husband tolerated his chemo.....now he is in cycle 5 of 6. He had his 2nd petscan ( 1st when he had diagnosed ) in his 4th of chemo.....and the cancer clear up, and the Mama ( that what i called for the big tumor in his lung ) is shrinking. My husband oncologist said after this 6 cycle complete, she want to do radiation in his brain and his lung in low dose. To prevent the cancer going there. and doctor said this is new theraphy to make the patient live more longer and keep the cancer not come back quickly. ( i know that there is still NO cure for extensive small cell lung cancer ) I hope one day they will find the cure for it.

Anyway, if we do the Radiation in Brain and lung will be 10 days in a row. after the 6 cycle complete.

My questions is : Is it save to do the radiation in the brain?? is it radiation save ?? i really really concern and worry about it.
and if we do it, what i have to expect from it, is it the side effect will be same like chemo? Example throw up, and very tired..

Thank you very much for the answer

JimC
Hi niaqre1,

Hi niaqre1,

I'm happy to hear that your husband has tolerated his chemo well, and that he has had such a good response to it.

Prophylactic cranial radiation (PCI), which is whole brain radiation given before there is evidence of cancer in the brain, is often given to small cell lung cancer (SCLC) patients who respond well to initial chemotherapy. SCLC often spreads to the brain, and PCI has been shown to improve results and lengthen the life of SCLC patients. Though there are some side effects of brain radiation, most commonly fatigue, the risk of cognitive deficits is low. As Dr. Gadgeel has stated:

"A recent European study demonstrated that patients with ED-SCLC, no evidence of brain metastases, and who have responded to first line chemotherapy benefit from receiving brain radiation following the completion of front line chemotherapy. The benefit is in the form of extending survival and markedly reducing the chance of the patient developing subsequent brain metastases." - http://cancergrace.org/lung/2010/08/07/treatment-of-small-cell-lung-cancer/

You can read a post on the side effects of whole brain radiation in the GRACE FAQ here: http://cancergrace.org/radiation/2010/09/13/radiation-faq-what-side-effe...

As far as chest radiation, that is not the standard of care but you can view this podcast by Dr. Hanna about that concept, and the types of situations in which it may be helpful: http://cancergrace.org/lung/2014/08/01/asco_2014_consolidation_radiation...

Good luck with the radiation and further treatment.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

niaqre1
Hello Jim,

Hello Jim,

Thank you so much for your quick reply and all the information.
With the radiation to prolong the survival... We will try it. Hoping we can buy some times.... Who knows maybe tomorrow there is some kind of new trial that that giving more satisfied result for extensive small cell cancer.

Thank you so much
Nia

Dr West
There is some controversy

There is some controversy about whether we can expect a survival benefit from the PCI, but there is very clear evidence that brain radiation reduces the risk of developing brain metastases, a risk that is in the range of 50-70% for people with extensive stage SCLC who don't get brain radiation. A European study shows a survival benefit with brain radiation, but a Japanese study does not.

PCI has been done for many years, and while nobody can guarantee that every patient will do well, most patients experience some fatigue, transient hair loss, but not much else. As with all medical decisions, it's a question of trying to assess the risks and benefits of all options, and avoiding brain radiation is not a risk-free option either, since brain metastases can cause seizures, headaches, falls, vision changes, and many other problems.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

niaqre1
Hi Again,

Hi Again,

Thank you Dr West for the information. We already consulted with the radiologist Doctor and he and my husband's oncologist doctor will discuss more about it. They want my husband to complete all the 6 cycles of first line chemo 1st before they will do the radiation. They want to do radiation on the brain and chest. 10 days in a raw that's the plan. My husband 6 cycles will be on 11/11 so it will be next week.

My question is, after this 1st line 6 cycles chemo then radiation on the brain and chest for 10 days. How long usually the cancer will come back?? and if it come back, chemotherapy will not work anymore?? why ??
after all this years, is there any another successfull trial to prolong the life of patient recently or going on ?? I read about immunotherapy, targeted therapy for lung cancer.... can it, it be done for EXtensive small cell lung cancer?? if the answer can not, why not?? mostly cancer is spread to the body eventhough it is not sclc. so why it can be done to other lung cancer but cant for sclc ??

thank you
nia

niaqre1
By the way, What is IMRT

By the way, What is IMRT radiation means?? As PCI means radiation for the brain right?

JimC
Nia,

Nia,

In the event of progression, further chemotherapy may be appropriate. You may find Dr. Gadgeel's post on SCLC treatment helpful: http://cancergrace.org/lung/2010/08/07/treatment-of-small-cell-lung-cancer/

Targeted therapies are used when certain genetic mutations are present (such as EGFR or ALK) but these types of targetable mutations have not been identified in SCLC.

There are numerous trials for SCLC; you can search for them at clinicaltrials.gov

Dr. Weiss has described IMRT:

"IMRT (intensity modulated radiation therapy) is a fairly new form of radiation therapy that allows "dose painting" onto a CT to give specific doses to specific places while avoiding passing a maximal dose to critical structures like spinal cord. I like it a lot for head and neck cancer radiation. The liver, in general, is not very tolerant of radiation therapy."

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

Dr West
And PCI stands for

And PCI stands for prophylactic cranial irradiation (radiation to the brain to prevent brain metastases in a situation that is high risk for developing brain metastases).

The time before a cancer relapses after treatment can vary a lot, from progression at the first scan done just 6-8 weeks after treatment is completed to possibly going more than 6 months. However, that time of progression is often 2-4 months after first treatments are completed.

There have been many, many trials done in small cell lung cancer with targeted therapies, and there will be some testing immunotherapies in small cell lung cancer. Small cell lung cancer is just different cells than other types of lung cancer, with a very different biology. There are some treatments that overlap (some types of chemo, as well as radiation), but others don't. However, we're learning more about the biology and genetics of small cell lung cancer, and new treatments will always be tested. Just because we haven't had new treatments in SCLC at the same pace we've seen with NSCLC over the past 5-10 years doesn't mean we won't make gains in the future. Believe it or not, 15 years ago, all of the excitement was in SCLC and people wondered whether there would ever be progress in NSCLC.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

niaqre1
Hi All,

Hi All,

Today should be my husband 6 cycles. But it has to be postponed until next week. Because my husband's blood platelets is low (97 ) . Others is fine. I asked the doctor what cause it low, the doctor said because of the chemo. It's my husband's 6 cycles and will be the last first line of chemo so the body need more longer to recover. But she said mostly people have this kind of problem in they 3 or 4 cycles. But as far as my husband can hold up until 6, which is good.
And his nails turn to purple also. And the doctor said its because of the chemo as well

I wondering how come it's low, it looks like my husband still doing good. He is not sick, still go hunting, he still active etc. How to make my husband blood platelets back to normal?? Is it having low platelets during chemo treatment is a good sign or bad sign for the future? I mean could effect the prolong of survival

Thank you
Nia

JimC
Hi Nia,

Hi Nia,

A patient needn't be ill to have low platelets, but it can make that patient more susceptible to becoming ill. When the low blood count is caused by chemo, usually time will solve the problem.

The low platelet count doesn't directly affect your husband's prognosis; it is just a side effect of treatment, and as long as he can bounce back and complete his chemo, the effect will be the same.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

catdander
Hi Nia,

Hi Nia,

It's so good to hear your husband is doing well on first line treatment. Many people have to stop when on first line. It's true that blood levels tend to go down during treatment, chemo is quite toxic. The good news is that after a break of a week or 2 the blood levels return to normal. It's very common, especially for my husband to be affected this way. It doesn't usually show up in the way someone feels but it's important to keep the levels as close to normal as possible and it shouldn't have any effect on his longevity.

Much good luck ahead,
Janine

niaqre1
Hello All,

Hello All,

Its been a while, My husband finished his 10 days PCI and 30 rounds chest radiation on March 11, 2015. The side effect is fatigue. April 22, his 1st check up after radiation done ( physical only). And they can not scan him because radiation could make inflammation and etc, so the result would not be accurate.
so the petscan scheduled june 15.

May 21 he had to hospitalized because his sodium was low 118. and out from hospital on May 24 with sodium up 133.

However now since June 1st, he has extremely pain in his stomach, back.....he said the pain is moving not only in one spot. So we went to his primary Doctor. blood test then get CT scan.
The result come out there is something in the chest besides his shrinking past tumor.
Because of his history of his cancer....his primary doctor appointed him to see his ONCO again.

But then he drop down hill since then. He lost lot of weight.....and meanwhile, before they know for sure, they only give him pain pill. Until our Appt with His Onco on Monday June 8,

My question is, is the cancer come back isn't it?
Is there any option or Clinical trial for Relapse EX SCLC going on recently? I am looking and read read and read....it seems no much option for EX SCLC. or is there someone out there have the same condition with my husband? ( Not from old forum ) and now in clinical trial ?
and what is the requirement to join clinical trial? should they have to be healthy to join? I mean not to sickly.
but looking at my husband condition, he become weak weak and weaker.

and if they want to put my husband in chemo again, what usually they giving on standard 2nd line chemo for EX SCLC ? and for how long? another 6 cylcle?

is there any hope for EX SCLC ? Or until now, there is no significant satisfied result for SCLC or in other word is hopeless.

Thank you for your answer

catdander
Hi Nia,

Hi Nia,

I'm so sorry to hear your husband is not doing well. There's no way we can say whether or not the cancer is progressing but unfortunately it's not unusual for sclc to be aggressive. If he is well enough to possibly benefit from chemo his doctors may suggest one. However if it's feared that more chemo would be more harmful that helpful focus can be moved to comfort care. Hospice care organization provide a great deal of help at this time.

From Dr. Gadgeel about 2nd line treatment for sclc, "As mentioned above, it is expected that cancer will eventually progress in a patient with ED-SCLC at some time point following the completion of first line therapy, usually in the range of months. At the time of progression, patients are most commonly treated with a drug called topotecan (Hycamtin). This drug is FDA approved for the treatment of patients with ED-SCLC whose cancer has progressed following treatment with prior chemotherapy and has been shown to improve qualify of life and also survival in this setting."
In a later paragraph he adds, "If the general condition of the patient is relatively good, many oncologist may consider offering these patients other chemotherapy drugs such as Taxol (paclitaxel) or Gemzar (gemcitabine). It is important to remember that these patients could be considered for clinical trials evaluating investigational drugs. However, many patients in this setting are struggling with increasing cancer-related side effects and cumulative toxicity issues with chemotherapy. For such patients, supportive care rather than further anti-cancer treatment may be most advisablee." http://cancergrace.org/lung/2010/08/07/treatment-of-small-cell-lung-cancer/ These quotes come from around 2/3 into the post.

I hope this helps you understand better what to expect, though nothing can truly prepare anyone. Whether or not he moves onto 2nd line chemo pain management should begin asap. I hope your husband finds pain relief soon.

All best,
Janine