Five months ago my Mom was diagnosed with extended small cell lung cancer, with metasticies in her liver, lymphnodes, and spine. She's 57-but you wouldn't guess it. She's beautiful. My best friend...and the reason the reason seasons change here in Ohio Valley. I won't describe how shocked and shaken we all were when we found out- if you're reading this, then it's a familiar feeling for you too.
"Inoperable. incurable. 18 months, with treatment," they said. To which I replied (and have often since) "My mom is not a statistic." Thus began a vigorous routine (among others) of chemo, radiation,visualization, flax lignens, essiac tea, etc. We've had incredible results and most of her scans come back with "Good news, it's shrinking." We're even to the point where it's stablized. And I'm so incredible grateful things are going so well. We've come so far. Yet as positive and optomistic as I generally am, and have been these past few months- I'm struggling.
Where are all the survival stories? Any at all? Any internet search engine when prompted "small cell lung cancer" will regurgitate back that survival of small cell cancer is slim to none beyond 18 months, and especially after 5 years. Responds very well innitially to chemo but will ultimately build tollerance.
It all sounds so bleak.....I'm not ready to let go or even begin considering it. I'm beginning to feel that even the wonderfully caring doctors and nurses are biding our time with routine and procedure. But that they ultimately believe they know the outcome.
I read a book called "My Beautiful Life" that strongly advocated a macrobiotic diet and acredited it with the main characters survival (without radiation or chemo). I'm wondering if we should try something similar. We've even integrated "miracle" herbal supplements into her diet. And there's talk of buying a water ionizer....but amid all these daily plans, routines and even successes, I'm losing hope. For some reason, it's becoming harder and harder to muster.
All that being said-does anyone have any to spare? Hope? Even just to last me the day? Insights, websites, a story? Anything that might reassure me that I'm not delusional for hoping. Or if I am-anything that will help me maintain my delusions for a while longer.
Thanks...thanks for making my day.
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Looking for hope
- By starlit3367
- Posted October 27, 2009 at 10:19 am · 17 replies
- In Small cell lung cancer
- Shared with the public
- Edited October 28, 2009 at 8:14 am
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- By cards7up
- Posted October 27, 2009 at 11:38 am
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There is always hope! How is your mother doing after her tx's? Are they suggesting anymore or is she on a maintenance tx? Others will answer you in abundance. True, not all survive, but many do. Don't read stats online or anywhere. They are old and people here will be the stats of the future. There's no telling who will survive or who will not. We can only hope and pray that tx works and gives them a quality of life worth living. Take care, JC
- By debra1
- Posted October 27, 2009 at 11:43 am
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Starlit-
Ext. SCLC statistics are not good and the best hope is what you said about your mom not being a statistic. Small Cell survivors are a minority but there also are less diagnosed with Small Cell.
I hope to give you some hope by telling you that at 56, I was dx Ext. SCLC 11/06. 06/07 I was "looking good" as my Dr. says. They could see no cancer.
I had chemo combo of Carboplatin and Irontecan and radiation to the chest. After no cancer seen I had WBR/PCI as a preventive to the head. I have survived almost three years, two years without any treatment which I never expected.
I have seen posts of SCLC surviving up to 8 and 9 yrs.
Take it one day at a time and be positive. It sounds as if things are going good right now.
- By bestbudz
- Posted October 27, 2009 at 12:49 pm
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My mom is 73. Diagnosed jan 09 with stage 4 sclc w/mets to liver bones and lymph nodes. We get bad news then ggod then bad. The cycle never ends. We've been in one clinical trial that worked great on the lung but not the liver. Doc is not hopeful due to the liver not responding. We are considering going to duke or UNC chapel hill just to explore all options. A fighting spirit and prayers will take you further than chemo sometimes. Don't ever give up
- By starlit3367
- Posted October 27, 2009 at 1:56 pm
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Thank you already. I'm new to this and am so pleased at how quickly you all have responded.
Mom is still going through chemo every three weeks. Carboplatim and topotecan. We're trying to work our way up to 5 days, but so far 3 wipes her out. At least every other week she gets a blood and platlet transfusion-but that didn't become routine until after she had radiation on her spine for 3 weeks. I keep hoping she'll recover from the radiation soon and feel on the up and up...
But what we wonder if there will ever come a time when aggressive treatment isn't necessary. I wonder things like, "how long can it remain stable?" The doctors don't talk about it because I'm sure they don't know either. They've compared her being "stablized" to remission.....but is it really comparable? I know I'm wallowing today, but it feels less like a victory and more like waiting for the bottom to drop out.
- By Marg
- Posted October 27, 2009 at 4:01 pm
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Here's another example of not a statistic....Mike was DX 1/2/08, EXT SCLC, mets to bone and liver. He has had 5 lines of chemo, radiation to chest, PCI and most recently, liver radiation (which "they" never do.) 22 months...not bad for someone who had 6 to 9 months.
Will there be 3 more months? 6 more months, another year for him? I don't know, but I don't know that I will have another 3 months either. We are just trying to praise God every day, love each other every day, and follow the path God has for us.
Marg
- By brooklyn1
- Posted October 27, 2009 at 7:28 pm
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Dear Starlit,
Just like there is no magic pill (our other discussion) there seems to be no one magic cure either, but many things can help build the immune system to help your Mom better fight this disease. You seem to be doing some really good things for your Mom's alternative treatment already.
My husband is on an 80% raw veggie diet, which has helped him in many ways. You can check out my profile, and there is a link in it to his story and his diet. Also go to nutrition - Drawing 3D has some fantastic advise about diet that might help you.
There is a great book called Anti-Cancer: A New Way of Life, which is written by a doctor with brain tumor, and touches on the mind-body-spirit connection. A good overview is on Amazon. And Becky is a great advocate of the alkaline diet, which is good to consider too. These are all in the discussions.
Have you considered LDN? My husband just started LDN - low dose naltrexone - which enhances the immune system. Today he had his bloodwork, and for the first time in months his white blood cell count came down from 14. to 12 in two weeks. And his MRI Friday showed no trace of his brain tumor at all, and no new ones (he had gamma knife in April) - diet is the only treatment he is using, so we think it works.
He was diagnosed with Stage IV NCSLC in February, and has not taken any chemo or radiation, and mananged to "survive" the six month to a year diagnosis given him. I know you are afraid, and we all join you there. But we look at ourselves as the ones finding a cure - you must see your mom as the survivor. I am impressed with the care and love you have for your mom. She is blessed you have raised such a precious daughter - You make a wonderful team.
I will say a prayer for you that your mom continues to rally, and that you both celebrate many seasons together for many years to come. Take care, Peg
- By cuddles53
- Posted October 27, 2009 at 11:39 pm
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Hi Starlit,
Nice to meet you, I was reading your post and just had to chime in here, you said you wanted some hope on small cell lung cancer. I will tell you that my husband was one who was cured of small cell.He lived for 6 years with it, he died but not from the cancer. he had a bleed in his brain. I know it was more than likely from his treatments he had in the past , but not from cancer. he started out at an early age of 21 with a brain tumor, this was operated on, and it was something they could not get out, we thought then he would die, it turned out that it never grew and may have been there since birth, who knows. he never had any more problems with anything like cancer again, and then on a regular heart exam found he had ext small cell lung cancer, he had no symptoms, he did continue to smoke never quit them, and never changed his diet, he ate meat daily, hardly any veggies and never on a ny special diet, he drank coke and coffee all day every day.So maybe for some, they believe diet is the trick, it was not for him, as I said neither was smoking. He had the lung cancer diagnosis with a life sentence attached that said we will do all we can for you but 3 months will be as long as you have got. He made all of his funeral plans and then lived on, he had many problems down the road he had to deal with, one of them was low platelet counts, he would need tranfusions about every 3 to 4 months. he kept waiting to get that 5 year mark, this was when the oncologist told him he would say it was cure, Well he did make it to that 5 year mark but then got another type of cancer in his other lung, this time they operated on it, and took it all out, no chemo or radiation needed, it was found on a regular screening. So there is hope, and the one thing he had was a strong will to live, I can't say it was diet or life style change at ll, as with me, I did quit smoking and I don't really watch my diet too well, I do drink the antioxidant juices, like red raspberry, pomegranate, blueberries, i drink green tea, and eat a few pieces of dark chocolate each day. but other than that i eat my donuts and a cappuccino now and then.I too am a survivor for 3 years and now 9 months also, I can not attribute my longevity to diet. . My belief is of having good faith that you can do it, faith that God will heal you, a positive attitude most of the time, it can't be done all the time, and hope, add some patience for the length of time it takes to heal our wounds from the chemotherapy and radiation, and Voila! Life begins again. Only this time it is different.
good luck to you.
God bless Sandy
- By llacy
- Posted October 28, 2009 at 1:06 am
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Also, if you look at past posts there was a discussion of success stories quite recently. Amazing people and amazing results.
God Bless
- By llacy
- Posted October 28, 2009 at 1:07 am
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Here are a bunch of success stories
"extensive sclc..any survivors past 2 years?3yrs?4yrs??
By Daughter816 · New reply October 25, 2009
63 replies
Please tell me there are you miracles out there that are still going strong with extensive sclc???? Anyone in remission??? I need my Dad and he just began the battle,he's doing ok,feels good and no reaction ..."
- By dusteerose
- Posted October 28, 2009 at 4:19 am
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Hi Starlite,
I too live in northeast Ohio. I am 54 years old and was diagnosed with extended small cell lung cancer in July/August 2008.
Don't listen to statistics!!!! I first line of chemo was etoposide with another (of which I can't remember). I had that from September 2008 through January 2009. I did 3 weeks of preventative radiation to the brain. I went into remission.
I had my 3 month checkup and the cancer came back in 4 tiny spots - 2 on my liver, 1 on my lung and 1 on my lymph node. I did 2 rounds of topotecan which only got rid of 1 spot on my liver so onc switched chemo to taxel/carbo. After 2 rounds of that I had a ct scan to see if that was working and got wonderful news. The spots are shrinking so we are continuing with that chemo and hopefully I will be back in remission.
Don't lose hope!!!!! It's been over a year for me and I hope to be here another few years!!!!
Jen
- By dusteerose
- Posted October 28, 2009 at 4:22 am
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Hello Again,
I do take a women's multivitamin, flaxseed capsules, turmeric and it's an immune booster capsule from a health food store.
Jen
- By gemhk
- Posted October 28, 2009 at 4:54 am
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Hello,
I am also on LDN ( Low dose naltrexone) as all convention treatment has failed me. LDN has worked for me by slowing/stopping the cancer and a very good addition to your other alternative. It is safe, non toxic and low cost.
I would seriously look into in as any benefits from chemo treatment are usually short lived and the cancer can start to grow again at alarming rate.
If you need any help or further information other than the LDN web site, let me know.
http://www.lowdosenaltrexone.org/
Dee
LDN user 2 3/4 years for stage 4B cancer.
http://www.ldn4cancer.com
- By linnea
- Posted October 28, 2009 at 7:21 am
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You don't have to stop hoping. Although I don't have SCLC, I have advanced NSCLC and was at the end of treatment options last summer and actively preparing for my death. I enrolled in a clinical trial that has been a very effective treatment and surprise, I am still here. Hang in there and it sounds like you are doing all the right things--including pouring your love into this person who is so dear to you. That in itself is hope. Linnea
- By debra1
- Posted October 28, 2009 at 4:46 pm
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In response to the post regarding LDN. This has been shown to only help with NSCLC. Do not give up hope, there are so many things and it sounds as if her treatment right now is working.
- By misself
- Posted October 28, 2009 at 6:41 pm
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Hi didn't have this kind but I know prayer,a positive attitude and following what feels right re nutrition all seem to bring positive results.Hang in there.AndiB
- By kendraangel
- Posted October 28, 2009 at 9:55 pm
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Sandy,
I read your posts often and you give me hope. My husband has smlc Dx 11/08 he had traditional chemo/rad/pci. It returned in his spine 08/09.. more radiation. It is hard for him to stay positive and he gets sad and depressed as I do too if I allow myself to think about our future. Sometimes I just don't know what to say.
I need hope and love to hear the success stories because the statistics are a downer.
Keep writting and praying.
Take care.
Margie
- By StacieK
- Posted October 29, 2009 at 11:19 pm
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i am so very sorry and am sending lots of prayers and hugs, do not give up or lose hope ever! i met a lady who is a 9 year SCLC survivor which had spread to her liver, her first doctor gave her 6 mths to live!
Stacie
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