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Who is living with SCLC?

sstacey
Posts: 2
Joined: May 2003

Hello.
My father-in-law was diagnosed with extensive SCLC in early March. He underwent radiation to the brain in the beginning and is now undergoing chemo treatments. He stays in bed most of the day and finds it hard to eat. He hasn't really had any nausea - just no appetite. He is losing weight and feeling weak. My mother-in-law is desparate for him to live. She is not great on the computer so she asked me to try and find someone with this same type of cancer who is beating the odds, or at least able to live a somewhat normal life. What has this person done to get to this point? What kind of treatments are they undergoing...what is their attitude/outlook, etc. Thanks!

bobmc's picture
bobmc
Posts: 49
Joined: Nov 2002

Hello, Suzgator; My very best to you and your father-in-law; So sorry he was dx'ed and your family is having to deal with lung cancer;

Besides the chat room here at ACS, you may want to try Lungcancersurvivors.org, there's about 350 members and caregivers on the board with quite a few dealing with SCLC ( even have a Dr. dx'ed with it ). Again, my very best to you.
God Bless you, your father-in-law and the family
Bobmc - NSCLC- stage IIB- left pneumonectomy 5/2/01
" absolutely insist on enjoying life today!"

michaelcie
Posts: 133
Joined: Nov 2001

hi,I am mike,i have sclc and am a survivor!!!! I have been inremission one year last Feb.I was inoperable,tumor measured 5inches x 4 inches x 3inches. I had six cycles of chemo: cisplatnum,carboplatnum,vp16 and taxol. also had six and a half weeks of radiation five days a week. They changed to the carboplatnum after my second cycle because the cisplatnum was killing me!! IF I can be of anymore help my e-mail is : handle@nauticom.net
Good luck and God bless mike

sstacey
Posts: 2
Joined: May 2003

Thanks for the info! Sounds like you have had it pretty rough. I'm glad things are going so well for you. I passed on your email address to my mother-in-law and she will email you soon. Thanks again!

michaelcie
Posts: 133
Joined: Nov 2001

Hi, if your mom in law ,e-mails me,tell her to title it in a way so I know what about, I might hav e canceled he mail by mistake,cause If I don't recognize I delete because of viruses on e-mail sites!!! mike

RITAEXE
Posts: 1
Joined: Jun 2003

HI. MY BEST WISHES AND HOPES FOR YOU AND YOUR FAMILY. I WAS DIAGNOSED WITH SCLC ON SEPT 17TH, 2002 AND TOLD I HAD APPROXIMATELY 30 DAYS LEFT. I AM 58 YEARS OLD WITH 3 GROWN CHILDREN AND 5 GRANDCHILDREN. WHEN MY CANCER WAS TYPED & STAGED THE DOCTORS TOLD ME IT WAS SCLC AND EXTENSIVE. IT HAD METASTISIZED INTO THE LIVER AND LYMPH NODES ALREADY EVEN BEFORE WE FOUND IT.

I WAS HAVING TROUBLE BREATHING AND THOUGHT I HAD PNEUMONIA WHEN I CONSULTED MY FAMILY DOCTOR AT THE TIME. WE GOT A VERY RUDE AWAKENING FROM THE CHEST X-RAY. THE TUMOR HAD JUST ABOUT FILLED MY RIGHT LUNG. IT HAD NOT SPREAD TO THE LEFT. I HAD A PREVIOUS CHEST X-RAY WITH MY PHYSICAL IN APRIL AND THERE WAS NOTHING THEN.

INSPITE OF THIS GRIM OUTLOOK MY FAMILY WAS GATHERED TOGETHER AND TOLD MY BOTH MYSELF AND MY DOCTORS WHAT THE OUTLOOK WAS. I WAS REFERED TO AN ONCOLOGIST AT THE MAYO CLINIC AFTER ALL THE TESTS AND INFORMATION WAS GATHERED. FOR THE PAST 8 MONTHS I HAVE BEEN GIVEN CHEMOTHERAPY WITH CISPLATIN AND VEEP 16. THESE DRUGS ARE VERY POWERFUL AND CAUSED A LOT OF SIDE EFFECTS THAT CAN BE QUITE NASTY. AT TIMES I DID NOT WANT TO GET OUT OF BED EITHER AND FORCED MYSELF TO LIVE AS NORMAL A LIFE AS POSSIBLE. EXTREMELY LOW HEMOGLOBIN COUNTS STILL FORCE ME TO HAVE 2 - 3 UNITS OF BLOOD VERY 3 WEEKS OR LESS. DEHYDRATION CAUSES IV FLUIDS TO BE ADDED AT LEAST ONCE A MONTH. I ALSO HAVE LOST 82 LBS FROM NOT EATING. NOT THAT I DIDN'T HAVE THE WEIGHT TO LOSE BUT I SURE DIDN'T WANT TO THIS WAY.

I STILL WORK AT MY JOB 4 HOURS A DAY WHEN I AM ABLE ( WHICH IS JUST ABOUT EVERY DAY). I HAVE A VERY SUPPORTIVE BOSS AS WELL AS A VERY SUPPORTIVE FAMILY. THEY ALL REALIZE I CAN NOT DO THE THINGS I USED TO. I TIRE VERY EASILY AND SOMETIMES SLEEP 10 HOURS A DAY OR MORE. I WORK IN THE TRAVEL INDUSTRY AND USED TO DO QUITE A BIT OF IT MYSELF. NOW I HAVE ONLY FLOWN ONCE SINCE SEPT. AND THAT WAS A SHORT FLIGHT TO PHOENIX THAT TIRED ME OUT COMPLETELY. I LIVE IN MINNESOTA AND AM CLOSE TO MAYO (40 MILES).

I CAN NOT SAY ENOUGH FOR MY ONCOLOGIST. HE HAS GIVEN ME MORE MONTHS THAN I COULD HAVE HOPED FOR IN THE BEGINNING AND I KNOW HE IS TRYING HIS BEST TO KEEP THIS BEAST AT BAY. WE BOTH KNOW IT WILL RAISE IT'S UGLY HEAD AGAIN AND THE TIME MAY BE SHORT WHEN IT DOES.

I AM DETERMINED TO LIVE AS NORMAL A LIFE AS I CAN, SPEND AS MUCH TIME WITH MY CHILDREN AND GRANDCHILDREN AS I CAN AND CONTINUE WORKING AS LONG AS I CAN. I WANT TO BE USEFUL AND CONTRIBUTE AS MUCH AS I CAN TO LIVING A NORMAL LIFE.

I THINK A POSSITIVE ATTITUDE AND A LOT OF STUBBORNESS GOES A LONG WAY IN HELPING A PATIENT LIVE A USEFUL AND PRODUCTIVE LIFE WHILE UNDERGOING SUCH A TRAMATIC THING AS CANCER. IF I GAVE IN AND STAYED IN THAT NICE WARM BED, SHELTERED FROM THE WORLD AROUND ME, I FIRMLY BELIEVE I WOULD NOT BE HERE TODAY TO WRITE THIS!

I HAVE A LOT OF PAIN FROM THIS. IT IS CONTROLLED BY PERCODAN WHEN I NEED IT WHICH IS MOSTLY WHEN I SLOW DOWN IN THE EVENINGS. I GRAB SHORT NAPS WHEN I NEED THEM. ( I'M NOT REALLY FUSSY WHEN OR WHERE EITHER AND PEOPLE AROUND ME UNDERSTAND THIS)

JUST LAST MONTH MY ONCOLOGIST CHANGED MY CHEMOTHERAPY ENTIRELY BECAUSE THE DRUGS I WAS ON WERE STARTING TO CAUSE BOTH LIVER AND KIDNEY DAMAGE. I AM NOW TAKING TOPOTECAN AND TAXOL. WE DO NOT KNOW HOW EFFECTIVE THESE WILL BE. I AM RECEIVING THEM EVERY 4 WEEKS IN 3 DAY IN A ROW DOSES SO I WILL FIND OUT THE 20TH OF THIS MONTH IF THEY ARE HOLDING THE TUMOR IN CHECK OR NOT. I PRAY THEY ARE FOR A FEW MORE MONTHS BUT IF NOT I THANK GOD AND GOOD DOCTORS FOR THE TIME I HAVE ALREADY BORROWED.

NO ONE TAKES THIS KIND OF NEWS EASILY. IT IS VERY DIFFICULT TO LIVE WITH THE KNOWLEDGE THAT YOUR DAYS/MONTHS ARE NUMBERED. DEPRESSION IS NORMAL AND HAS TO BE HANDLED EITHER BY MEDICATION OR JUST PLAIN STUBBORNESS. YOU HAVE TO PLANT YOUR FEET ON THE GROUND AND BE DETERMINED TO LIVE THE LIFE YOU WANT TO UNTIL YOU CAN NO LONGER PHYSICALLY. THAT WAS HOW I HANDLED THE DEPRESSION BUT REST ASSURED IF I HAD NEEDED DRUGS TO HELP I WOULD HAVE ASKED FOR THEM.

FOOD DOES NOT TASTE GOOD. EVERYTHING HAS A METALLIC TASTE. I FOUND THAT I CAN TASTE PASTA AND MEXICAN FOODS BETTER THAN MOST AND RED MEAT CHOKES ME. (I USED TO LOVE A GOOD STEAK!DARN!) FISH AND SEAFOOD ARE EASIER TO DIGEST.

BEACUSE OF THE LOCATION OF THE TUMOR I WAS INOPERABLE AND NO RADIATION SO CHEMO WAS THE ONLY ALTERNATIVE FOR ME. IT HAS DONE WONDERS BUT THE SIDE EFFECTS ARE HORRIBLE SOMETIMES. WE JUST HANDLE THEM AS THEY COME UP AND GO ON. THAT'S ALL YOU CAN DO.

TALK WITH THE DOCTORS. THEY HAVE SEEN IT ALL BEFORE. THEY MAY HAVE SOME TRICKS UP THEIR SLEEVES TO GET MORE FOOD INTO HIM. I CAN ONLY TELL YOU WHAT HAS WORKED FOR ME. I KNOW IF MY HUSBAND (WHO IS VERY NORWEIGAN) GETS ONE MORE PLATE OF PASTA PUT IN FRONT OF HIM AFTER I AM GONE, WILL PROBABLY GO HUNGRY INSTEAD. HE PUTS UP WITH IT NOW THO GOD BLESS HIM.

TAKE CARE AND GOD BLESS. I AM HERE TO TALK WITH ANY TIME FOR AS LONG AS I CAN ANYWAY. ALSO DON'T LOSE YOUR SENSE OF HUMOR. IT HAS HELPED ME TREMENDOUSLY SO FAR HANDLE ALL THAT HAS BEEN THROWN AT ME.

RITA IN MINNESOTA

blt
Posts: 5
Joined: Jul 2003

The American Cancer society will provide a protein drink (Boast) free of charge. Call ACS or ask your dr. about it. Try slightly freezing to make a slush. Fruit and seafood(fish) are often best tolerated. I have been surviving and leading a prettry normal life about 18 months. Very active in church, community affairs and meals on wheels volunteer. Keeping active and a positive attitude is most important. BLT

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