I don't want to steal the hope on this forum. I just want to say that sometimes people with extensive stage small cell lung cancer feel like they have to put up a noble battle to please their friends and families. This never gives the person the chance to fully realize that the disease is fatal. The fact is, we do not have the right chemotherapies and radiation to cure this disease. This is why we need research and clinical trials. I stongly feel this disease will be curable someday when we develop the right tools. As for now, miracles happen, but they are too rare to count on. I have seen the most devout Christians say they are going to make it a few minutes before they die. Who do they say it for? Usually to not "let down" their family by dying.
With this disease (extensive stage small cell lung cancer), so many people are in denial: doctors, family, and even more rarely, the patients. No one wants to admit it is terminal. I have been told by children to not tell their mom or dad they are dying and I have been told by the mom or dad to not tell their child that they are going to die. It is a circle of deception. Why is it that death=failure in our society. It is an equivalent passage to birth, and birth is celebrated. Death is taboo. Why is that? Even in our overwhelmingly Christian where faith is a bult in safety net for the fear of death. . .
The dying patients I have counseled in hospice feel a great burden is lifted when people recognize that they are going to die. The patient can talk about their imminent passage with dignity and respect. It can become deeply spiritual, very beautiful. It gives everyone the oportunity to say goodbye, one last time.
In closing, I just want to say, when all hope is lost medically, it is not a failure. I know it may seem that way now, when you are clutching to your ailing family member. To acknowledge that it is fatal may be a huge relief to the person suffering. The person you love may finally be able to get closure on their lives and may even embrace the final passage as an end to suffering and maybe something more.
If anyone would like to talk more about this, I welcome your thoughts.
I agree with you 100%. I recently started a nonprofit for my mom who died from SCLC in January of this year. The holidays are going to be tough. However, the reason we developed the nonprofit was to raise awareness and funds specifically for lung cancer since it gets very little recognition in comparison to breast cancer, colon cancer or prostate. All of which have an 85% or higher survival rate greater than 5 years. Although non-small cell is more prevalent than small cell, small cell patients have a more limited path because it's inoperable.
When my mom was towards the end, I think she knew. But I was her only daughter (and one son) and I was getting married in 2 months. Realizing one day in the hospital that she would not make it to the wedding, we had an impromptu wedding in the chapel of the hospital. She was on TPN (food nutrients) as well as liquids, so they wheeled her down and she saw us get married 5 weeks before anyone else did. It was official too. When it was done, I thanked her for making my dream come true and she said "anything for you kid" and I know at that moment she felt relieved because she knew that I would be devastated otherwise. She passed 5 days later.
My dad was in denial of the whole thing and really thought she was coming home. But I knew she knew she wasn't and she was only staying strong for him. He would cry in the hospital by her bedside and she would tell him to leave and go home to pay the bills. She said that him crying was not helping her any. I think it just made her feel more helpless knowing she couldn't do anything for him and that he was going to be lost without her.
But we couldn't talk to him. He didn't want to hear it.
My mom was the rock in our family and we miss her very much but I know she lives on in my heart and in the foundation we started in her honor. I won't quit until we find a cure.
Hi i feel very bitter at the moment,my dad was only 59 when he passed,he was told on 6th november on his own at hospital that he had lung cancer an only 2 months 2 live he had never realy been ill before we brought him home an cared 4 him as much as we all could,i feel cheated as 28th November my dad passed away we was all at his bedside when he left us i had hold of him for a few hours after he passed i couldnt except it an still carnt.people say hes gone 2 a better placei am a spitual person so i should know that,i carnt understand how dad could leave us all, one day he was out an about the next he goes 2 hospital with back pain 2 be told hes got 2 months yet god only gave us 3 weeks. why why why........yes i am very angry upset an very hurt dont know which way 2 turn what 2 do,my mam is very poorly as well,thay was both in hospital together at the same time we all thought it was mum we was going 2 lose coz like i said dad was never ill an mum was dad looked after mum. sorry for going on like i have.debs
Thanks for the thread. My wife lost her dad a couple years back to SCLC. He had zero chemo, zero radiation. He did not put up a fight. He died three weeks after we learned of the disease. Each day, breathing became a little tougher and he had a bit more pain. He was only in pain for a week or two, mercifully. He refused and discouraged our frantic attempts to find alternative treaments.
When we learned of his condition, I began researching it and became quite interested in the formation of tumors, the specific sequences of genetic mutations leading to specific histoligic types and subtypes (small cell oat, small cell non-oat, squamous cell, adenocardinoma bronchalveolar, etc.) and positive and negative prognistic factors.
Not being an oncologist by training, I've had to learn a great deal (and still have only a rudimentary understanding) and had developed a long and abiding interest in oncology, and for whatever reason my interests have fixated especially on this disease - which killed my wife's last remaining parent. One online resource I found extremely helpful - a transcription of several lectures by noted specialists from various backgrounds focused on SCLC.
Clearly the consensus in the medical community is that survival rates given current treatments for for this disease, although greatly improved 30 years ago with the CAV regimen (Dr. Wittes), are unacceptable. Promising new therapies include anti-angiogenesis hormones (endostatin).
While it may not be possible to cure extensive-stage SCLC in the near future, I think a 5 or ten year survival with reasonable quality of life would certainly be the next best thing. I believe in my heart that anti-angiogenesis hormones applied AFTER a CAV or PE regimen has achieved a partial remission may be able to achieve something close to this. (I'm particularly excited about Endostar, not available yet but a derivative of endostatin developed in China. By way of disclaimed I am not associated in any way with its Chinese mfr.)
Better minds than mine are working on these ideas, although I've yet to read of a trial of anti-angiogenesis drugs in SCLC, which according to some doctors is a prime candidate given its need to develop blood vessel systems quickly.
BTW the reason chemo "stops working" after awhile is due to it effects only on cells with specific alellic losses, or specific antigens present (I'm still learning, forgive me). To use p53 - commonly damaged in cancers incluing SCLC - as an example, alellic damage to the 17p chromosome responsible for p53's manufacture/encoding 1) neutralizes wild p53 protein's ability to halt mitosis (division) of DNA-damaged cells while repairs are made or else kill them and 2) eliminates the "check-sum" feature that detects such damage, increasing susceptability to yet more mutations. In extensive-stage tumors, not only are there more cancer cells - there are more KINDS of cancer cells - more specific DNA permutations. Chemotherapy doesn't work against all of them - only against the most common ones. Actually it's more complex than that, getting into antigens on the cell's membranous surface, but the upshot is, to completely cure cancer using conventional chemotherepeutic thinking, we would need millions of diferent chemical-molecular compounds and would need to identiy each large population of unique mutations. Even then, we would likely miss some.
This is why I do not think chemo alone is the best option for SCLC, and we need anti-angiogenesis as a long-term, side-effect free adjuvant post-chemotherapeutic treatment. Another possible option is, I believe, is delta-RAS-1:ER activation (Ravi et. al.) which does not kill the tumor cells but does result in better differentiation into more normal neuroendocrine cells. This reduces overall cell division to 39% of its normal division rate and might at least prolong life.
I hope that this information, part of 2 years of independent research by a non-oncologist, might offer at least a modicum of hope for the future FWIW.