need to hear from long term survivors SCLC-ex

[thriving]

I was diagnosed Mar'11.Low sodium sclc-7cm tumor right lung-they said limited first-both the onc and rad onc .Day of lung rad sim they said they saw what might be Liver mets-no lung rads-started carbo/etop every 3 weeks 3 days-I was going to a community clinic-had no insurance..they did not do a biopsy to confirm liver mets-they did not give me nuelasta-chemo was a week late 4 times. Scanned at round 2-significant reduction in lung tumor,supposed liver mets reducing-said they saw evidence of bone mets but they were already gone-added zommetta.

I got insurance and moved to a aggressive cancer clinic here in columbus ohio-Zangmeister--my new onc was not convinced I had liver mets possible he said--without a biopsy there is no way to realy know as for the bone mets he said lets continue with zometta and see...He prescribed-4 more rounds of etop/carbo(making a total of 8,then pci if brain was still clear, then lung rads if the liver was clear. They scanned at 7 rounds and the doc came in and said-liver mets are completely gone-if they were liver mets--bone issues nonexistent ,lung tumor shruk to 1.8cm..he did say there was a lymph node that had grown 3 mm however could be the slant of the camera, allergies, or nothing-said the rad onc would kill it and the tumor. sent me to rad onc..he ordered immediate Brain Mri for the next day-came out clear as a bell, did final round of carbo/etop-finished PCI this week,Starting 6 weeks of lung rads on monday.

This new onc gave me the nuelasta from the git, I had very few side effects from chemo-hair did fall out-I went to work every day during chemo-I walk dogs for a living-I went to work everyday with PCI and I intend on going to work everyday with radiation. I asked my onc about prognosis...and he said--no prognosis--lets treat you. My rad onc, onc, and nurse practioner have all said that I have had a remarkable responce that I was doing very very very well.

I despereately need to hear from Long Term Survivors!!!!

Any advise or tips to survive would be appreciated!

thanks you!

[ts]

Hi and welcome,

Sounds like you are doing fantastic. Don doesn't post often (I believe his last post was in May) because he is just plain busy. But I love his story and think it might be what you are looking to read:

viewtopic.php?f=7&t=18395&p=415815#p415815

Keep doing what you love - dog therapy is working well for you. By the way - did the dogs act funny around you before the diagnosis? There is research that dogs can smell cancer better than any early diagnostic testing we have!

[jaminkw]

I am 3b lung cancer dx'd by cell analysis. LC but not evident in the lung. Started with chemo for malignancy in pleura (chest wall). It moved to the abdominal wall but still LC. I've been on treatment most of 4 yrs. With the exception of a couple of bumps in the road this past spring, I have been doing well and living a relatively normal life.

Sounds like you are on the right track with this change in treatment facilities. Keep up the good fight!

Judy in KW

[eric byrne]

Hi Thriving,

Sorry for the late reply,welcome to here,a place just bursting with lots of friendly caring sharing buddies,with lots of years clocked up surviving this disease in all its many forms and stages at dx.

Like most people when they are at first dxd with lung cancer,the search for re-assurance begins,I did it, bought the tea-shirt.If I remember my local library stocked about a dozen books on cancers of all types,I read everyone of them.I then searched out a variety of sources to find these elusive long term survivors,newspapers,journals,information booklets from the many cancer organisations.Good news stories did exist,I would cut them out,and keep them to refer to if I got a bit down, which did happen from time to time.

Actually,with the passage of time,my frayed nerves began to settle and I started to believe I may well be one of the lucky ones who can beat this,yes,I do have a future I told myself.

Then one day something wonderful happened(this is not a fairy story by the way-although for me it really was)I bought the local evening paper,in it was a guy called Robert Lowe,he was trying to start up a lung cancer support group in a hospital in Glasgow,so far so good,but when it went on to describe Robert's history of lung cancer,I just could'nt believe it.Dxd with SCLC in 1993,given two months to live,hospitalised for his chemo,his family called out on three different occassions to his bedside,as his doctors did'nt think he would see the next day,Robert to his doctors astonishment goes on to make a full recovery.In 2007 Robert is now dxd with NSCLC,has chemo and a lobectomy,goes on to make a full recovery.Robert today is 72 years old,not just surviving but thriving,his energy and lust for life is just amazing,he is now the longest surviving duel lung cancer patients in the UK,and I am proud to have him as a friend,since I joined his lung cancer support group in Stobhill Hospital.

And he still lives,happy ever after.