Extensive Small Cell Lung Cancer - 1265669

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-can…

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

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

Hi Nia,

Here is more information on PARP inhibitors in SCLC:

http://cancergrace.org/lung/2014/04/25/iaslc_pietanza_parp_inhibitors_s…
http://cancergrace.org/lung/2014/05/06/iaslc_rudin_parp_inhibitors_impr…

JimC
Forum moderator

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

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

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

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-can…

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-eff…

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_radiatio…

Good luck with the radiation and further treatment.

JimC
Forum moderator

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

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-can…

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

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

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

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

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-can… 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