Was just checking in with other Extenive Stage Small Cell Lung Cancer..I'm Diagnosed sinced last October.Haning in there.I did have Brain metasisization about 6-8 weeks a go..Have memory loss now.The memory loss seems to be getting a little
bit better but not like it was before..
I am on a trial chemo drug..It is in pill form..I take 2 every morning now..I'll do that for 3 weeks then a week off..this is my second session of this..I willhave some tests again after my 3rd session to see how it's coming..If it's working.Why we will keepit going..It does not really affect me at all..so if it works I'll keep it up.Ifn not we'll see what is available.I really have run out of options..I have finished 2 rounds of chemo prior to this..So lets hope this will help..
Any body else out there have anything they can anser to or throw out there about ext stage small cell
and how they are doing?
Dan
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Just Asking others With Small Cell Lung Cancer
- By 8wall
- Posted November 4, 2009 at 10:42 am · 32 replies
- In Small cell lung cancer
- Shared with the public
32 replies
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- Newest first
- By cuddles53
- Posted November 4, 2009 at 10:55 am
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Just curious if you would tell me what the name of the medication you were put on? Thanks and good luck with it, If it gets to the point and you are told we have nothing to offer, don't go away just yet, put it out on this board for some more options others on here have tried. I hate it when a ptaient like yourself is told this by a dcotor. It makes me lose faith i them. We need to hear more hope stories not negative ones, even if they are only negative things that look like will be for the future! We can't look at it that way, or we will submit and give in. i can't for the life of me, figure out what good it could possibly do, to tell a patient we have run out of options? Can you give me one good reason? I can't think of any. I believe in faith, and hope, and patience. These 3 things if anything are going to help us, not hurt us, but giving negative answers like that to an aleready burdened down, and vulnerable person is just no good. I don't care who thinks or tells me differently. I find it is not good for a person. So am here to talk to, if you need me. There is hope. I am telling you this and it is coming directly from the man upstairs! You have hope and you need to keep faith. With patience we can get through this together. Do not let anyone take the hope you have in your heart and use it against you.
God bless Sandy
- By Yankeespie
- Posted November 4, 2009 at 11:34 am
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Hi 8wall, I'm new to this site but not to the World of Cancer. I have BC and my 39 yr. old son was DX with NSCLC this Oct 6th. Please remember there isn't an expiration date stamped on your butt! Things may not look to good at the moment, but what you just heard are only words, and we all know they can't hurt us! The path I have chosen for myself is Alternative, I believe Cancer is no different than any other serious disease, your body can cure it given the proper tools.
I believe the medical industry only addresses possible cures, and totally ignores finding out what in fact causes cancer. What comes first the Horse or the Cart? I believe it's the horse.
With that being said, as our own Master of our ship we have to stop and realize that if we don't first change our external and internal environment, to bring our body back to balance no drug on earth will keep us safe. So if you haven't already, I would start looking at what you can do to bring your body back to balance so you can fight the beast.
A very good book is Anti-Cancer A new way of Life.
http://www.amazon.com/Anticancer-New-Life-David-Servan-Schreiber/dp/0670020 346/ref=sr_1_1?ie=UTF8&s=books&qid=1223598977&sr=1-1
Hulda Clark The cure for all diseases, has alot of good information, not all of which I agree, but most is very good. You can get her book free online. I'm sorry I don't have the link to that any more but I do have both of her books in PDF format that I can get to you, if you would like?
Juice enough carrots to equal 16 0z. of carrot juice, juice one Granny Smith apple and one stalk of celery. Drink that fresh all day as much as you can drink. I only could manage 32 oz. a day, but 9 mos. later I still drink 8 oz. a day. That combination builds up your Natural Killer Cells. There is so much you could be doing to help your body fight cancer.
I've also read two of Suzanne Somers books, Ageless and Knockout. Both give you alot of hope and idea's.. Knockout has some info on lung cancer which I was happy to see.
I'm sorry 8wall I didn't mean to go on and on!
Just trying to tell you there is hope ~ YOU are the Master of your own vessel!
X-tra warm blanket of hugsss to you in this most trying day today,
Bev
- By 8wall
- Posted November 4, 2009 at 11:41 am
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Sandy
Oh we have an arms length of options from Sloan Kettering,this treatment is so far bang on and there are many many many more options..That won't be an issue..They are tops in the field..They will eventually cure us!. Seriously No need to worry about the top care fromThem!!Thanks for your thoughts and caring though.
Dan
- By 8wall
- Posted November 4, 2009 at 11:52 am
- Report post
Thanks all
Positive thouhgts are very important..Much appreciate
your responses and positive thoughts..All the care I have from my Familly,Friends is unsurmountable in the battle..I will say that primarily all my treatment
with exception of the Brain set back has been done with Sloan kettering..I cannot tell you how good they are!!!! True leader in Lung Cancer in THE WORLD!..Lets Not Let That Go By Us!!! Please!..They know what they are doing..The care is tops
Thanks again for allyour caring
dan
- By 8wall
- Posted November 4, 2009 at 11:52 am
- Report post
Thanks all
Positive thouhgts are very important..Much appreciate
your responses and positive thoughts..All the care I have from my Familly,Friends is unsurmountable in the battle..I will say that primarily all my treatment
with exception of the Brain set back has been done with Sloan kettering..I cannot tell you how good they are!!!! True leader in Lung Cancer in THE WORLD!..Lets Not Let That Go By Us!!! Please!..They know what they are doing..The care is tops
Thanks again for allyour caring
dan
- By debra1
- Posted November 4, 2009 at 12:05 pm
- Report post
Dan- I too have ext. SCLC but have not had the challenges you have had. I had WBR for a preventative and I had some memory problems. The memory got better but still not as good as before. I still can work full time but it becomes very frustrating at times. Have you had regular combo chemo other than the trial you are in? You are with the best Drs. possible so I would think they are doing what is best.
Keep us updated.
- By 8wall
- Posted November 4, 2009 at 12:40 pm
- Report post
Hi Deb
Yes I was Scheduled for preventative WBR..But Didn't
quite make it ,I had it without volunteering! Ha!.Now I have had 2 full chemo's and this I'm on now is a pill form of chemo.Plus I had the Brain radiation wich was 15 sesssions daily..
So It's basically normal stuff..With exception the Brain Radiation,But I heard thats just about a norm part of Ext Sm Cell..And the Pills I'm taking now..well that's chemo.but just daily pills,that I hear is a norm too..,So If all this keeps things in check then we keep going!
Memory is a bit of a nuisance what? Gosh.Never thought such a small thing like short term memory would be such a pain..frustrating as heck too!!...Just all of a sudden get lost!!!
Oh Well.It's all different!.
Thanks for droping me a note.
Dan
- By dusteerose
- Posted November 4, 2009 at 12:51 pm
- Report post
Hi Dan,
I too have extended small cell lung cancer. I am 54 and was diagnosed July/August 2008. My first round of chemo was etoposide and another which I can't remember the name. I had that from September 2008 through January 2009. I went into remission. I also had preventative radiation - 2 weeks for the brain and 3 weeks for the lung.
I went for my 3 month checkup and the cancer came back. Four small spots.
I went on topotecan and after 2 rounds it only got rid of one of the spots so the onc change the chemo to taxol and carboplaten. So far it seems to be working. I am keeping my fingers crossed.
Jen
- By 8wall
- Posted November 4, 2009 at 1:13 pm
- Report post
Jen
Good for you.I think once we hit the second year.We seem to get a little unpredictable?But it's a pretty tuff disease..the tuffest out there..I'm hopin you holdup
tight.no discomfort.May you and for familly enjoy themselves.
Gog Bless
Dan
- By debra1
- Posted November 4, 2009 at 1:17 pm
- Report post
Dan-
The memory has really gotten better. I had a few weeks about two months after the radiation to the head where it was scarey. Words were just not there...I was trying to tell what I wanted on a sandwich and I could not think of the words but my daughter would help and I would say yes or no. I would call her when I drove somewhere and tell her where I was going. Now I know the words but they will be there one minute and next minute, not there. Some days worse than others. Hang in there.....when no cancer showing, it will not bother you quite as much. LOL
- By 8wall
- Posted November 4, 2009 at 1:35 pm
- Report post
Yeah it's crazy sometimes!.I don't drive anymore.Wife and son's won't let me.Always have some one with me on the train to NYC to visit the Dr's.Ha it's not too bad.I golf when I can,watch what I do.But it's ok still.
Dan
- By cuddles53
- Posted November 4, 2009 at 4:16 pm
- Report post
Dear Dan,
I apologize, I am so sorry, I don't know what I was thinking when I read your post, but I totally put my response to you on for someone else! I thought you had said a doctor had told you, there were no more options for you. I was doing two different things all at the same time, and totally either read your post wrong, or mixed you up with someone else. I totally feel like an idiot! I am an idiot for writing this. I know that hospital has excellent ratings, and I am sure the docs do too I am glad you are happy in their care.. so please ignore that stupid post I sent on here for you. I guess i am losing it! Lol,not really too funny if I really am losing it. take care, andf good luck.
Sandy
- By 8wall
- Posted November 4, 2009 at 8:42 pm
- Report post
Oh thats not a problem at all..I figured there was a mis-read and want to let you know how pleased I am with my care at Sloan..But I will say it does happen that Dr's
are off in there treatments with patients more than we know..But I'm 100% with Sloan Kettering..always have been..very nice for you to take the time to come back and let me know..I understand..All in all it's a tuff thing we are having to face..ourselves,family and friends..very trying.I know we won'tget through it but
we'll get by the best we darn well can,
thanks for your thoughts
Dan
- By RiaRia
- Posted November 8, 2009 at 10:42 pm
- Report post
hi dan: don't really have anything much to add ...just glad to see you are hanging tough. i hope your trial chemo works (is is temador?). taking a pill is such a great convenience and even better when there are no difficult side effects! don't worry about the short term memory loss....make lists!!! keeping you in my prayers....maria
- By MicheleL
- Posted November 8, 2009 at 11:03 pm
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I was wondering if you wouldn't mind answering a few questions about the whole brain radiation that you underwent.
At what point in your treatment did your dr recommend wholee brain radiation?
what did your dr tell you about the benefits that whole brain radiation has to offer? does it keep the cancer away 100%?
what did your dr tell you about the side effects of the whole brain radiation?
My father is at a point in his treatment where the dr has been suggesting whole brain radiation. My father is really against it because he doesn't want anyone screwng with his brain. I am trying to find out as much info as I can about it.
Thank you so much and be well.
Michele
- By 8wall
- Posted November 9, 2009 at 6:56 am
- Report post
Thanks For keeping in touch Maria.
Yes I feel things slowing down some each day and week..But that's to be expected with ths terrible disease..I just find so much family support and over whelming support from our group here.That it's a day
by day battle..Don't really feal that much worse each and every day..I know it's taking it's toll on me ,,I felt pretty sluggish yesterday,But I was golfing with my 2 Sons!!! So I am truly blessed.Thanks for keeping
in touch with us.
dan&Family
- By 8wall
- Posted November 9, 2009 at 7:21 am
- Report post
Michele
Sure I'll answer that for you.Keep in mind that this is just my opinion..But I'll throw my two cents out there..
I was scheduled to have this done volountarily.My cancer came back below my neck region.This needed
chemo as a priority..So I had just finished 5 sessions
of chemo when I had a fall..(tripped in public on the way to a follow up shot at the DR's)
Michelle the lung cancer had spread up into my Brain..
So I was scheduled to have this done voluntarily
but ended up having no option ..I hope your following?
They gave me (I beleive) a total of about 10 radiation shots..Thats all I get..I beleive this is standard.Once you get the Radiation shots the brain
thats it.No More..Check into that..But I was told this and beleive its absolutely true...Now I would not be as well as I am had I not taken the radiation.
Michele that I tell you from my true experience in the past couple of months..I beleive it helped me..I now am on my second line of Oral Chemo (From Sloan Kettering).We'll find out a littlemore this week..But I seem to be hanging in there..
My 2 cents worth is ..That I am receiving the best care ther is..I'm discussing things with my wife..yet
so far i'm following there suggestions..What I have is terminal..There is absolutely no doubt about it..My positive thoughts and good care,love and support
simply gives me a say in the matter..We are still winning and I stay away from Pain!!
Hope this helps..
These raditaion treatments can only help him.truthfully..the side effects are not too bad..We have no choice..its the lesser of snag..we are better
off taking it.
Dan
- By Marg
- Posted November 9, 2009 at 7:33 am
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Dan,
I don't know why after only two chemos your doc says you are out of options? My husband, Mike (ext sclc) has had 5 lines of chemo, and we are now doing number 3 again. You can look at my profile and see all that he has had.
He is at 22 months since dx. He is doing OK. Needs to rest a lot, but is cetainly not in bed all the time. He volunteers two mornings a week at an elementry school. We go out for dinner a couple times a week, church, not weekly, but at least twice a month. He still enjoys watching football. You aren't out of options, but might need to get a second or third opinion and make find a doc who is willing to fight along side you as long as you are willing to fight.
Lord,
Help Dan today. Give him strength and faith. Help the doctors working for him to use wisdom and knowlegde. If it is your will, beat back this beast in Dan. All this I ask you the name of your son, Christ Jesus. Amen
- By 8wall
- Posted November 9, 2009 at 7:50 am
- Report post
was mike dx'd fully from the start with extensive stage small cell lung cancer?I beleive there's 2 stages small cell and extstenive to this type of dreaded desease.
also i have never implied or said that anyone has ever said tome i was out of options..there are many of them and sloan is top nothch..I have tremendous faith in following through..
I thought back a few months ago you guys were battleing with courag a litle something different than staright ext stage small cell?Not sure if or what that means but don't give up.
Dan
Dan
- By tomo
- Posted November 9, 2009 at 7:58 am
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Hi Dan, My dad was diagnosed last Oct and he is having his second lot of chemotherepy at the moment. His first was last Oct with WBR Jan 09. His memory was affected and I drove him everywhere,but not any more and he is driving again but only short journeys. He had had problems with sickness during the last year. He is ok, tired, sleepy at times but he still go places. We had a bonfire party at his house last Thursday which was great! Playing golf with your sons, no wonder you were tired! I would Be!! This is a terminal disease and I find that really difficult to accept for my dad. Please stay positive. Sending you big hugs. Juliex I have not heard of chemo tablets - would you please let me know their name.
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