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SCLC One Year Survivor today 04/01/08


mas-a

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I am praying and hoping this helps other who are diagnosed with this horrible vicious desease. Never give up, and definitely don't believe stats you read or hear. You are not a statistic, you are an individual fighting for your life.

I have reading posts, occasionally sending pms to people with sclc posts. Thank you Lynn, Don and Sandy for your responses. God Bless you all. We continue to pray, We believe in MIRACLES and his Dr's advice.

MY husband's story. God has given me a Wonderful; husband, father to our children, grandfather, friend, and in-law (my family cherishes him) 54 yrs old, Married 34 yrs, Two daughters, 3 grandchildren, grandson due first week of January 08.

05/97 Heart Attack, stent

05/06 triple bypass

6 months of X-rays for chest pain in chest, arms, back, cough, and flu like symptoms.

10/06-3/07 PCP was told of coughing up blood. Gave script for levoquin, said it was pneumonia. Questioned DX due to pneumonia vaccine in 12/06. We were told the X-rays showed nothing.

3/07 requested a MRI/CT due to coughing up blood and his brother was battling NSCLC. PCP refused scans, said he would have to be on the phone 15-30 minutes with the insurance co. Dr. stated we had no clue as to how long it takes to get authorization. Inquired if I needed to find another doctor to make arrangements for a CT Scan. "I COULD TRY" was the answer!!

3/07 called another Dr. who agreed to CT scan

04/01/07 Dr. called with news of a Large mass found engulfing the Pulmonary Artery, lymph nodes. Requested we go to the ER immediately due to a possible major bleed.

4/01-04/07 Emergency Room, hospitalized, CT, MRI of the brain, Bronchoscopy, Bone Scan,

04/03/07 DX of SCLC, not sure if LD or ED

04/05/07 Port inserted

04/07-09/07 Carboplatin and Etoposide started, treated aggressively as limited. 6 rounds every 21 days. Aranesp and neulasta Injections. Blood tests every week to check on counts

04/09/07 released from hospital. Back to work 04/10/07

04/13/07 PET Scan

04/17/07 suspicious spots on adrenal gland (could be inflammation), lower spine and healed broken rib. Still treating as limited due to DDD of spine and broken rib could be from triple bypass.

04/27/07 CT scan, Shrinkage of lung mass, adrenal gland clear suggested most likely inflammation.

04/28/07 His brother passes from NSCLC.

04/30/07 Radiologist consults for Chest Radiation 30 days 5X a week. Start 05/07/07.

05/01-03/07 Second round of Chemo. Oncologist suggests SSDI for a while due to chemo and radiation treatments...tired Aranesp and neulasta injections to keep blood counts up. Bone and muscle pain & aches

05/10/07 Second opinion with Fox Chase. Told if ED, no cure, could biopsy rib to see if met, 4 rounds of Chemo no radiation.

05/11/07 Spoke with Fox Chase, no biopsy of rib, could give false negative due to prior chemo. 4-6, possibly 9 months.

Back to original Oncologist, more aggressive and positive.

5/22-24/07 Third Round of Chemo…very tired. Aranesp Injections to increase counts. No neulasta due to radiation. Bone and muscle pain & aches

06/05/07 Blood counts down. no chemo

06/06/07 Platelet transfusion

06/12-14/07 4th round of chemotherapy Very tired, aches and pains.

06/14/07 completed 18 days of radiation …reset smaller target area.

07/07/07 CT Scan local hospital…not our choice, where CAP is. Report: very little shrinkage, spots on spine

07/09/07 Severe Esophogitis from radiation. Magic Mouth Wash. Pain meds

07/10/07 Chemo cancelled, low counts

07/11/07 2 units of Whole Blood Transfused. Give Oncologist CT from 07/07/07, she consults with his radiologist.

07/11/07 Oncologist calls with good news concerning CT Scans results. Sees dramatic shrinkage away from Pulmonary artery, no mets, no spots, disagrees with prior CT report. Suggests PCI. Definite reason to question the local hospital and staff.

07/16/07 Finished Chest Radiation, back to Aranesp and neulasta injections to prevent low BC's. Bone and muscle pain & aches again. Welcomes break in daily hr. drive back & forth for radiation, mood much better. Esophogitis getting better.

07/17-19/07 5th round of Chemo. Very tired, aches and pains. Aranesp and neulasta injections to increase blood counts.

07/30/07 Consult with radiologist. Thumbs up, told he is doing well. Told PCI only if CR.

07/31/07 Blood counts low

08/01/07 2 units of Platelets transfused.

08/07/07 Chemo cancelled Platelets still low. Aranesp Injection.

08/07/07 Oncologist agrees with ASCO report. PCI strongly suggested after Scans completed mid Sept. If headaches occur, brain MRI immediately. She doesn't want anything popping up while receiving PCI, would have difficulty if new chemo needed as well as PCI at the same time. I can't say enough about her, she is wonderful. Onc. suggests he watch is weight, due to heart disease, he has gained 35 lbs since DX. Wow, she is concerned about other medical problems other than cancer. He is a viable human being, not just a number.

He Continues to work as of 04/10/07. I don't know how he does it. His response, "no work, no insurance, no insurance, no treatment". We continue to pray for NED in next set of scans, and everyone on this site.

08/18/07 Last round of Chemo, blood counts are great.

CEA numbers were 1.7 in June, 1.4 in July, in normal range. People with small cancers or early-stage disease usually have low, or even normal, CEA levels. CEA levels usually return to near-normal levels within 6 weeks of starting treatment if cancer treatment is successful. We are praying he is one of the fortunate ones whose cancer was caught early.

08/16/07 very tired, feeling pretty crappy lately, Aranesp and neulasta injections. Next Oncology apt. on 9/11/07. Re scan mid Sept. Welcomed break.

08/21/07 Blood Work great, was within normal ranges.

08/27/07 Brain MRI. We will get results 9/11/07 Praying daily it will be clean.

9/11/07 Script for PET and CT scans. 15 mm suspicious spot found on left side of brain, no edema, or swelling Onc. feels it was a few renegade cells prior to start of chemo. Told us not to look at as a setback. She believes the next PET & CT scan will show NED, or at the most maybe a few non-active spots.

CT scan 09/14/07, PET Scan 9/18/07 for restaging. Pray for NED

9/19/07 starting 10 treatments of WBR

9/18 07 CT results stable, no spreading, lymph nodes clean, upper right lobe mass could be collapsed lung, CT cannot differentiate between mass and collapsed lung, still unsure of spinal, could be DDD. PET of brain and whole body will show more.

9/19/07 WBR begins today, changed to PCI

9/19/07 Met with Radiologist, MRI was wrong (5th misdiagnoses with local hospital's radiologists), PET scan showed NED!!!! in brain and body. We received our Miracle today. Thank You Jesus, Mary, Joseph, St. Jude, St. Peregrine, & St. Michael of the Saints for answered prayers.

9/21/07 Picked up a copy of PET scan report from GP. No MISTAKE, No evidence of met disease.

9/22/07 ONC called agreeing it is NED fantastic news.

9/25/07 headache & nausea from PCI

10/02/07 Last day of PCI, very tired, headache. Radiologist wants to hold off on steroid for headache because headache is slight, told to take Tylenol instead.

10/05/07 Very tired, headache

10/06/07 loosing hair, headaches, tired, radiation burn

10/09/07 Onc appt. All looks great, next appt. end of Nov. CT/MRI/PET apts. prior to apt.

10/24/07 Insurance Co. denied PET Scan. Appealing refusal.

11/16/Scans Praying for NED

11/23/07 Second denial of PET

11/27/07 Onc. apt.

11/27/07 CT stable, no spread, MRI of brain shows infarct.

Oncologist wants PET to verify NED. Possible residual pneumonia.

12/12/07 Oncologist calls, spoke with insurance about PET, if denied again, Dennis will have another CT scan in 6 weeks and lung biopsy.

12/20/07. PET scans approved by insurance. Scheduled for 12/27/07. Oncologist called, saying she is sure it will look great. Thank you Jesus, Mary, & Joseph, St. Jude, St. Peregrine, St. Michael of the Saints, and all who keep Dennis in their prayers.

12/27/07 PET postponed, upper resp. infection, rescheduled for 1/04/08. Onc. apt scheduled for 1/08/08. Prayers for continued NED

1/08/08, It has taken a few days to post the results, not good news. The cancer has returned after 3 months of NED. Spine, clavicle, hip, left lymph node (SUV 7), a few lymph nodes along the center of left lung area. Will start Carboplatin & CPT-11 on 1/15/08. No cure, given 1 1/2 to 2 yrs if response to treatment.

1/09/08. The Oncologist called, is confident he will respond to Chemo combo, due to; earlier CR to Carboplatin & Etoposide, age, general health, and performance status (he continues to work full time), she is hoping for remission again, suggested if all goes well, this will buy him 2 more years, hopefully another treatment available, again 2 more years, and so on. Praying and hoping this treatment works. Please keep him in your prayers.

1/15/08 Zometa, Decadron, Carboplatin, CPT-11, no diarrhea, feels good. Will continue with CPT-11 next two weeks, one-week rest, back to Zometa Decadron Carboplatin, CPT-11 every 28 days. CPT-11 every week.

1/22/08 2nd chemo, doing well, some nausea, weight loss, fatigue. Hair continues to grow back.

1/30/08 ALL Blood Counts Low, no Chemotherapy. Will do CPT-11, Carboplatin, Zometa, and Kytril on 2/05/08.

2/05/08 RBC & WBC OK, Platelets too low, Chemo next week hopefully.

2/12/08 Counts a little low, Chemo again, dosage lowered a little. Thank God

2/19/08 Counts a little low but Ok, Whole chemo rag (4 BAGS) again. Very tired, dizzy, SOB. will discuss with Onc. on Tuesday.

2/26/08 No Chemo, Blood Counts too low. SOB due to low counts

2/27/08 Blood Transfusions, 2 packed Red, one Platelet. Breathing a little better.

3/04/08 No Chemo again. Nurse mistakenly gave back-to-back Chemo on 2/12/08~ 2/19/08, Dr. confirms mistake, causing low counts again.

3/05/08 Blood Transfusions, 2 packed whole blood, 2 platelet.

3/10/08 petekia verified, transfusions needed.

3/11/08 Blood transfusions 2 packed whole blood, 2 platelets.

3/17 CT Scan

3/18/08 low Blood counts, retest 3/20

3/20 low BC.

3/21 blood transfusions 2 packed RBC

3/25 counts better, resume Chemotherapy, Aranesp. Thank you God, CT shows dramatic shrinkage, but pneumothorax. will wait & pray for repair, 4 weeks CT again for pneumothorax. If unchanged 3 day hospitalization to repair the tear. I am a bit confused, the area where the tumor was found is where it was thought to be a collapsed lung, now it is a lesion? I am wondering if it is actually a lesion. If so, does the possibility exists he was not in CR as believed. If it is not a lesion, and it is a collapsed lung, is it possible when it inflated, it caused a tear? Will have to discuss with Onc at next appointment. Either way, the good news is, the chemo has done something, which is positive.

3/29 very tired

3/31/08 tired & still working, 4/01/08 1-year survivor, MIRACLES DO HAPPEN!!

04/01/08 BC good, Chemo today.

04/02/08 Feeling crappy early morning, kytril for nausea.

04/06-08 Went to AC to get away, tired, walked for several hrs.

4/08/08 Feeling better but RBC & Platelet counts low, no chemo. Wait a week to retest and chemo.

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Great News!

I see you went to Fox Chase @ one point - where are you located in the NE and who does your husband see now? My Mom also has Small cell-extensive-going on 20 months now and we go to Univ of Penn-we went to Fox Chase for our first opinion

Dar

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Hello SandraL,

Congratulations on your one year!!! The odds are getting better for all of us touched by this beast. Stats are wrong, Miracles do happen. Hoping and praying for many more years.

God Bless you and your family,

mas-a

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Debbie,

You are very welcome. Looking forward to reading your post celebrating your mom's ONE YEAR ANNIVERSARY !!! Glad to read your Mother is eating again. Great advice from Don who mentions how important it is to eat no matter what!! I am sure Dennis is tired of my pushing food at him, but his Dr. agrees no one battling this disease should be on a diet.

Continued success for your mom's 1 year and many more to come.

God Bless,

mas-a

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Hello Dar,

Wonderful news on your mother's 20 month success. Stats are changing everyday. I sent you a PM. Yes, we went to Fox Chase, it wasn't a positive experience in any way. I don't recall any anyone giving us hope. I am guessing they are standing by stats from 20 yrs ago. I try not to be dismayed concerning their response, I attended Pulmonary Rehab with a close friend who they did help for many months. I am assuming it depends on the stage, and the treating drs. who we encounted. What I am not assuming is the fact; so many are beating these stats, and this is a very good place to be.

God Bless you and your family

mas-a

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SO happy to hear that your husband has surpassed the one year mark and will continue to keep your family and everyone on these boards in my prayers and thoughts.

To add some more "good" news, my mother reached her one year since diagnosis this past week as well and is going pretty good right now except for headaches. We had gone to a huge cancer center in our area during the first week after diagnosis and the same situation occured where they did not give her much hope. Our family immediately wanted her to go somewhere that had hope and I think that made all the difference. Staying positive is so huge during treatment, recovery etc.

I wish you many more years of NED

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SO happy to hear that your husband has surpassed the one year mark and will continue to keep your family and everyone on these boards in my prayers and thoughts.

To add some more "good" news, my mother reached her one year since diagnosis this past week as well and is going pretty good right now except for headaches. We had gone to a huge cancer center in our area during the first week after diagnosis and the same situation occured where they did not give her much hope. Our family immediately wanted her to go somewhere that had hope and I think that made all the difference. Staying positive is so huge during treatment, recovery etc.

I wish you many more years of NED

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Hello BettyBP,

Thank you so much for you kind words and prayers. Congratulations on your mother's surpassing the one year mark!!! We completely agree, a positive attitude is so important. We also believe everyone should get a second opinion. We stayed with the original Onc. because she believes in fighting the cancer with aggressive treatments. I wish you and all on the site continued success.

God Bless,

mas-a

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