Limited Survivors? Are They Out There

A few weeks ago I posted a message about SUV ratings from a pet scan and got a few helpful responses.  Hoping for the same here.  Unfortunately last time I had posted I didn't know I had small cell.  It has been comfirmed and I started my first round of cisplatin and etoposide yesterday.  On my first day I recieve cisplatin, fluids and etoposide.  My second and third day of the round is onlly etoposide.  I will have four rounds of this treatment.  Is this about average for a round or can anyone enlighten me.  I felt very tired both days (sure hope that improves) other than that no other side effects other than ringing in my ears once when I got up today.

Starting 5-6 weeks of radiation on small lung tumor and lymph glands.  Had a cat scan and found no cancer in the brain and I discussed the preventive brain radiation and will probably take it.  Scary part of all this small cell stuff is even though my doctor said he would classify me at one of the best candidates for cure (very small tumor and surrounding lymph) statistically I still only have a 25% chance for a five year survival.  Finding out I had small cell was devastating.  I found out over the phone and my wife said I turned white as ghost but I'm trying to keep a good attitude.

Sorry to be so long winded.  Any survivor stories and info about my rounds of treatment (is the the average round and treatment?)  My best wishes and prayers to everyone out there.  I think we need a few miracles.

One more thing.  I din't know if I could edit the last message.  Rounds are three days on and 18 days off.  Let me know if that's about average

Hello Rich,

I am a caregiver for my husband who was diagnosed with limited SCLC in April 2006.  I will post his profile as I have listed on  http://lchelp.org/ which is an awesome that I could not have gone through this all without.

Hubby developed cough and lost some weight while traveling winter of 2005/2006. PCP ordered CXR.
4/6/06 CXR: Bilateral mediastinal masses.
4/12/06 CT Chest. CT revealed a large superior mediastinal mass on the right, 6.5 x 7.8 cm. A 4.7 x 4.7 cm left hilar mass and just superior to the decending aortic arch 2.6 x 3.5 cm.
4/12/06 CT/Biopsy SCLC.
4/21/06 MRI Brain, CT Abd/Pelvis, Bone Scan, all negative for mets
4/26/06 Carboplatin/Etoposide 6 cycles. 35 radiation treatments to chest.
Low blood counts, dehydration, esophagitis, blood transfusion, platelet transfusions.
10/20/06 PET showed no active disease.
10/31/06 PCI 17 treatments.
12/29/06 PET 4 areas suspicious for bone mets
1/4/07 Bone Scan, only 1 area suspicious
1/8/07 Oncologist discussion with radiologist the discrepency
1/18/07 MRI thigh, 95% certain bone mets
1/19/07 Showing signs of confusion, wobbliness, shuffling, hands shaking for 1 week, no appetite, admit for MRI of brain
1/21/07 No mets to brain, possibly dehydrated. Symptoms decreasing. Appetite better
1/22/07 Oncologist gives us story, possible 4-6 months without treatment, 1 to 1/2 years with treatment. Referral to Moffitt Cancer Center in Tampa for 2nd opinion.
Awaiting appt at Moffitt 2/12/07
Dr at Moffitt Center recommended 2nd line chemo
2/20/07 Oncologist recommended Topotecan. Port replaced, old one defective. Still unsure when to start chemo, feeling too good to be sick again.......bone scan ordered for 3/1/07..back pain
3/2/07 Bone mets in several places, not too much pain yet. Still trying to decided treatment or not.
3/7/07 Started chemo, Topotecan 1x/wk for 3 wks, off 1/wk, then again 1x/wk, three weeks. Zometa Then scan?? So far, so good.
3/14/07 Visit with Rad Onc, CT mapping for bone pain radiation to begin in April....Chemo today, port problem, blood counts down, Aranesp. Feeling ok, just tired.
3/21/07 Chemo cancelled today, low WBC and Platelets. Off two weeks. Port still not working, so will most likely have the Xray study done before next time.
4/3/07 Back from beautiful trip to NC. Feeling good. Started chemo again, port worked. Blood counts good. Decided against radiation at this time, pain not that bad. Life is good. Thank you Lord.
4/11/07 Chemo again, Zometa for bone strength and Ananesp for low RBC's. All is well.
4/12/07 Feeling bone pain, achy, flu-like symptoms. Most likely from Zometa.
4/18/07 Chemo today, low WBC and Platlets. Neupogen shot. One week off. Pretty fatigued.
4/24/07 Saw Onc today for lump on neck and new area of discomfort in lower back and around to front. Have no clue what that is. DR ordered CT neck, chest, abd/pelvis with a f/u appointment next Monday. Low blood counts, Aranesp shot.
4/27/07 CT Neck, Abd/Pelvis, Chest
5/4/07 Dr called with results. Lymph node mets and skull mets. Abdomen and Pelvis OK. New treatment plan on May 8th. Bill is feeling good. Thank God.
5/8/07 Saw Onc today. New treatment plan for new lymph node involvement. Port still giving him trouble. Dr ordered an XR to see what is wrong. Zometa. He will start Carboplatin/Topotecan on the 23rd of May. We'll see what that does.
5/9/07 Feeling tired, achy, slight fever from Zometa.
5/13/07 Bill's 60th BD and our anniversary.
5/14/07 Port checked, still doesn't work right. Radiologist says TPA won't work but he did it anyway and wants to recheck on Thursday.
5/17/07 Followup port check. Good blood return. Will start Chemo next week, May 23rd.
5/23/07 Chemo today. Carboplatin 276ml/Topotecan 8mg. Kytril/Decadron. Blood counts good. Trouble with port, no blood return but dripped after much persuasion.
5/30/07 chemo, low blood counts. Most likely shots next week.
6/6/07 Chemo canceled, counts way too low. We knew they would be, but couldn't get the shots until counts low enough. Zometa today, Aranesp and Neupogen.
6/13/07 Chemo canceled again, Platelets still too low. Ugghhh!!!
6/19/07 Onc visit today. Resume chemo, Topotecan only.
6/27/07 No chemo again today. Blood counts too low. Aranesp and Neupogen.
7/3/07 Saw Onc today. Looking for a treatment plan that might work consistently. Hemoglobin still low, no chemo today (per Bill's decision.) Will try Topotecan every other week.
7/10/07 Blood counts good, got Topotecan and Zometa today. Good day.
7/11/07 Appt with Nurse Practitioner, is someone is finally listening? PET scan on 7/23
7/17/07 Labs today, down but not horrible
7/19/07 Aranesp and Neupogen shots

My suggestion would be to also go onto the website I have mentioned and read the message boards for SCLC.  The people there are a Godsend and will help you through this.  There is so much support and information.

Laurie 

 

 

 

 

 

 

On 7/19/2007 Rich1951 wrote:

A few weeks ago I posted a message about SUV ratings from a pet scan and got a few helpful responses.  Hoping for the same here.  Unfortunately last time I had posted I didn't know I had small cell.  It has been comfirmed and I started my first round of cisplatin and etoposide yesterday.  On my first day I recieve cisplatin, fluids and etoposide.  My second and third day of the round is onlly etoposide.  I will have four rounds of this treatment.  Is this about average for a round or can anyone enlighten me.  I felt very tired both days (sure hope that improves) other than that no other side effects other than ringing in my ears once when I got up today.

Starting 5-6 weeks of radiation on small lung tumor and lymph glands.  Had a cat scan and found no cancer in the brain and I discussed the preventive brain radiation and will probably take it.  Scary part of all this small cell stuff is even though my doctor said he would classify me at one of the best candidates for cure (very small tumor and surrounding lymph) statistically I still only have a 25% chance for a five year survival.  Finding out I had small cell was devastating.  I found out over the phone and my wife said I turned white as ghost but I'm trying to keep a good attitude.

Sorry to be so long winded.  Any survivor stories and info about my rounds of treatment (is the the average round and treatment?)  My best wishes and prayers to everyone out there.  I think we need a few miracles.

I am working on fighting small cell bladder cancer which is very similar.  I had the basically the same chemo except I believe I had an extra day of VB-16 (etoposide)  I had five rounds but two were targeted for the transitional cell bladder cancer. 

Getting tired, ringing in your ears, nausia etc are all part of it but at the end of the day, doesn't mean much compared to not having the chemo.

 I believe that statistics are broad based - what are the characteristics of the sample (older than you, sicker, other morbitities, type of care and focus, how big is the sample).  I am into I am well into year 2 from the original diagnosis and 7 months after it was found to have spread.  I had complete remission, then a slight reoccurence then changed chemo then gone on the PET/CAT scan so... so far so good.

 I have also been presented with the option of the whole brain radiation as a profalactive measure - would be interested to hear more of your thoughts.

 Small cell stinks but fortunately, it reacts well to chemo.  I am with you, we need some miracles - and enough time for the science and medical world to beat the disease.

 Faith, familty and support people are the most important.

 

My husband was diagnosed with small cell of the bladder in Dec. 2006. He underwent the same chemo that you are, three weeks apart. He did not have radiation.  Each chemo he felt worse than the one before. He had trouble finding food that didn't taste like metal or tin in his mouth.  Smells bothered him also.  He would have good days about 5 or 6 days before the next chemo. After two rounds of chemo the pelvic scans showed the small cell mass was shrinking.  After 4 chemo rounds the doctors said the mass had practically disappeared.  Brain and bone scans did not show signs of the small cell anywhere else.  On April 23rd, 2007 they decided to remove his bladder, thus getting rid of the small cell.  My husband bounced back to his normal self until mid-May.  He then starting having rib cage pain and lower back pain.  After a week of Advil and being told he was doing too much and to take it easy, they did an MRI and found small cell in the rib cage and liver.  He passed away on June 10th of this year.  My heart is completely broken.  I've lost the love of my life.

 

My message to you is 'don't let them open you up'. The small cell got in the blood supply and ran to the liver and bone.  It's a very aggressive cancer that they do not have a good long term plan to fight it with. However, they are making advances everyday.  Keep with the chemo and radiation to control it.  Don't let them open you up.  There are many clinical trials going on for small cell that will eventually offer treatment and hope.  Do not give up.  I pray for everyone on these message boards everyday.

 

Love,

Lynn

Don't forget to drink lots and lots of water (2 - 4 liters/day). A lemon slice may help the nausea - or dill pickles. For fatigue, increase your protein. Kelp supplements help, too. You can do this! Remember that when they give you odds, the information is at least 5 years old! The longer you live, the greater the odds. Plus, a lot of those people could have died of old age, not from the cancer.

Hi, Rich.  My husband's situation is a little different; he has non-small cell in lung which  metastisized to throat.  He was given less than a year to live in Oct 06.  He is doing beautifully right now.  He is taking a chemo pill (tarceva), but also something called Protocel.  We tell everyone we know who has cancer about it.  Go to www.protocel.com.  We know many people who have been cured using this.  It's an amazing story which you can read on the web site.   Good luck to you and everyone who has to visit this website.  The Phillips

Dear Laurie,

 

Please call me at 813-263-6107

 

Mrs. Chaco

Tampa, FL

Rick,

I hope you received my e-mail if not give me a call at 813-263-6107

 

Thank you,

 

Mrs. Chaco

 

On 7/19/2007 Rich1951 wrote:

A few weeks ago I posted a message about SUV ratings from a pet scan and got a few helpful responses.  Hoping for the same here.  Unfortunately last time I had posted I didn't know I had small cell.  It has been comfirmed and I started my first round of cisplatin and etoposide yesterday.  On my first day I recieve cisplatin, fluids and etoposide.  My second and third day of the round is onlly etoposide.  I will have four rounds of this treatment.  Is this about average for a round or can anyone enlighten me.  I felt very tired both days (sure hope that improves) other than that no other side effects other than ringing in my ears once when I got up today.

Starting 5-6 weeks of radiation on small lung tumor and lymph glands.  Had a cat scan and found no cancer in the brain and I discussed the preventive brain radiation and will probably take it.  Scary part of all this small cell stuff is even though my doctor said he would classify me at one of the best candidates for cure (very small tumor and surrounding lymph) statistically I still only have a 25% chance for a five year survival.  Finding out I had small cell was devastating.  I found out over the phone and my wife said I turned white as ghost but I'm trying to keep a good attitude.

Sorry to be so long winded.  Any survivor stories and info about my rounds of treatment (is the the average round and treatment?)  My best wishes and prayers to everyone out there.  I think we need a few miracles.

 Yes I am still here, diagnosed June 13, 2005. I had a 7cm growth in my left plural area of my lung involving nerves to the diaghphram. Had it surgicaly removed, then did 6 treatments of the same as you, had radiation for 7 weeks or 35 sessions, during the last half of chemo, I have been cancer free since. Did not have brain iradiation as dr said it would add to my confusion, of course i also suffer with myasthenia gravius and lamber eatons myasthenic syndrom. I am not complaining, as I am only 57 and am really enjoying life and grandkids