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Thread: Husband has extensive stage sclc

  1. #1
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    Husband has extensive stage sclc

    Hello all,

    I have been reading on this forum for the last few days and this is my first post. My husband was diagnosed with extensive stage small cell lung cancer on Sept 28. He has begun chemotherapy (Cisplatin and Etoposide). He has completed 2 cycles and goes for re-staging CT scans of head, chest, abdomen, and pelvis on Monday. I expect we will see significant regression of the cancer based on what the oncologist has predicted as well as comments I have read on this forum.

    Originally, he had a 5 X 8 cm mass in his right lung with smaller lesions in both right and left lungs, nodal mets, "innumerable" lesions in his liver, and lesions at T-8 and L-4.

    So far he has tolerated the chemo amazingly well with no nausea or vomiting. Just periodic bouts of hiccups! In fact, he had been experiencing nausea pre- treatment and we have commented that he is the only person we know that chemo CURED the nausea! His cough is much better, as well as the SOB.

    I don't know what the future has in store for us, but am glad to have found this forum. You all seem to be very supportive and caring. This is still so surreal. He looks the same (except his hair is now VERY thin) and he has had none of the ugly chemo side effects we were afraid he would suffer. Makes it so hard to believe that this is reality and not some sick joke.

    Thank you--I expect to be posting more and more as time goes by and we learn what is in store....

  2. #2
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    Hi Toppermom,

    Welcome to our Forum and I hope you come to find the value we have all found here. Your husband's first round of chemo sounds like it is going well. One of the few benefits of SCLC is that it usually responds well to the first round of chemo. Glad he is having little in the way of side effects. Please keep us posted and we'll try to help you through. God Bless.

    Irish
    Irish,
    Caregiver to my Dad, who was diagnosed in June 2010 with Stage 1V NSCLC with single met to brain,
    He sadly lost his battle in August 2010 and we miss his smiling Irish blue eyes terribly.
    My Dad's story:
    http://www.cancerforums.net/threads/...th-how-he-died.

  3. #3
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    Hi Toppermom, I am glad you found your way here! My mom has extensive stage sclc also. Her 1st line chemo was carboplatin and etoposide. She had very few side effects (lost her hair) and it worked really well. She was so much better and it shrunk her cancer substantially! Hang in there, and have hope!

  4. #4
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    Good Morning folks,

    It has been a long week for us. My husband had a shot of Neulasta on Monday to boost his white count. As the steroids given with chemo have worn off, he is naturally feeling less energetic, less optimistic, and more tired. This morning he got up and said he had a horrible night--he hurts all over. His back, his rib cage, his extremities, just "all over". His cough is returning again (it almost disappears on the days right after chemo, which ended last Friday, the 9th). Not sure how to help--don't want to smother with kindness, but want to do anything possible to be helpful.

    His sister is coming to visit next week along with 2 of our kids. I hope that is not going to be too much for him....

    He is getting CT scans on Monday of his head, chest, abdomen and pelvis for re-staging now that he has completed 2 cycles of chemo.

    Additionally, in spite of my best efforts, I somehow caught a cold, so I have tried to isolate myself from him as much as possible so that he does not get it. I really HATE that I can't touch him....

  5. #5
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    We all hate it when we get colds, I work in an elementary school so it is hard to avoid. Mom washes her hands and uses lysol wipes frequently and that has helped some. We also all use those hand cleaners like Purell all the time. Hope you feel better soon!
    Mom's xray July 2011 looks suspicious, CAT scan July 2011 SCLC ES diagnosed August 2011
    Etoposide Carboplatin begins august 24th 2011
    CAT December 2011 lung tumors gone or greatly reduced, liver tumor not detectable PCR January 2012 CAT March 2012 more shrinkage
    CAT July 2012 tumors growing July 2012 Topotecan CAT October 2012 Liver tumor has grown October 2012 Taxotere begins CT scan - no growth - brain mets, WBRT in February, CT Scan in March 2013 shows more growth, begin Gemzar.
    Mom passed away July 8, 2013.

  6. #6
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    Thank you, Franniedid. We have been avoiding kids (including our grand kids right now) and using the hand sanitizers, etc. So far he doesn't seem like he is showing any cold symptoms ( thank goodness) in spite of his white count likely being at it's low point.

    He is presently getting his CT scans so hopefully we will get good news with the reports. Fingers crossed.

    He isn't feeling great--I don't know if it is chemo related, anxiety about the scans, or just plain being bummed about the whole situation. Probably a bit of all of the above.

    I so wish I could do more to help.
    Caregiver to 71 YO Husband Ex Stage SCLC:
    Chest x-ray Feb 2012 negative
    Chest X-ray Sept 27, 2012 large mass right lung. CT scan confirms lung mass with liver involvement.
    Oct 4 Liver biopsy confirms Ex Stage SCLC
    Pet Scan-large (6 X 8 cm) mass right lung with smaller masses both lungs, lymph node involvement, innumerable masses in liver, bony mets to L-4 & T-8
    Oct 17 Begin Chemo (Cisplatin-Etoposide)

  7. #7
    Administrator Top User Didee's Avatar
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    Hello.
    Some people have a lot of bone pain from Neulasta and many find relief by taking the over the counter antihistamine Claratyne/Claratin.
    Aussie, age 57
    1987 CIN 111. Cervix lasered, no further problems.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011.
    Scan Feb 2012 .still in remission.
    Still NED Nov 2012. On to yearly bloods now.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma. A lump in otherwords, nodule if you wish to be specific.

    CancerForums User Policy

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    Out of all the things I have lost, I miss my mind the most.

  8. #8
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    Thank you Didee--would never have thought of that. Will definitely try it when it flares again, which presumably it will with the next injection.

    Really appreciate the tip.
    Caregiver to 71 YO Husband Ex Stage SCLC:
    Chest x-ray Feb 2012 negative
    Chest X-ray Sept 27, 2012 large mass right lung. CT scan confirms lung mass with liver involvement.
    Oct 4 Liver biopsy confirms Ex Stage SCLC
    Pet Scan-large (6 X 8 cm) mass right lung with smaller masses both lungs, lymph node involvement, innumerable masses in liver, bony mets to L-4 & T-8
    Oct 17 Begin Chemo (Cisplatin-Etoposide)

  9. #9
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    Hi Toppermom,
    I just wanted to say hello and offer any help I can. Our family is going through this as well. My MIL was diagnosed in April of this year with Ex stage SCLC as well and her husband (my FIL) has alziemhers which is progressing. Times are tough but we are hanging in there, as I know you all will as well. I can hear from your posts just how much you care for your husband and I can not imagine how scared you are but I hope you find the forum to be comforting and as helpful as I have. It is a place where everyone understands all of the different emotions and feeling we have. I wish you all the best and will send prayers for you both.
    God Bless!
    Maria
    73 y/o MIL- dx Ex Stage SCLC 4/30/12
    Liver biopsy 06/21/12
    Mets to lymph nodes & spine
    July 4, 5, 6. Chemo
    July 16, in hospital for pain
    July 18. CAT scan.Brain ok,Spine has mets
    July 23-27 radiation to prevent fracture
    Chemo Aug 8, 9, 10
    Chemo Aug 29, 30, 31
    Chemo Sept 26,27,28
    Cat Scan Oct 3, Oncologist Oct 15
    More mets, no further treatment
    Jan 8/13- CT confirmed large brain mets
    Hospitalized...declining.
    Feb 19, 2013 Carol passed away with all of us at her side.

  10. #10
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    Hi Toppermom, welcome to the forum. My mother has nsclc. The one bit of advice that I have is to spend as much time as possible making memories. Journal if you can. Remember to find the gold nuggets that come with this dreadful disease. They are there, you just have to find the. I pray for strength for you and for him. God bless you. Anj.
    Caregiver to mom, 64 Ovarian Cancer Remission since 1997.
    6/19/12 Annual blood work - CA125 came back elevated.
    6/21/12 CT abdomen, RUL 2.8cm spot, LLL 5mm spot, lt. adrenal gland mass 8.3cm, rt. adrenal gland mass 4.6 cm.,
    6/28/12 Brain MRI-Clear,
    6/29/12 Lung Biopsy=Stage 4 NSCLC.
    7/11, 8/3, 8/23, 9/13/12 Chemo (Carb/Alimta).
    CT Scan 10/4/12 1 of 4 tumors decreased. 20% Kidney function. Blood transfusion
    10/9/12. Mets to liver.
    12/11 chemo (carb/taxotere) continued thru March.
    March 27, 2013. Told no more chemo, cancer now in the brain, to call out Hospice. Set up hospice March 31, 2013. Mom passed April 12, 2013. She will always be in my heart, never forgotten and always loved. May we reunite soon....after only a temporary separation!

  11. #11
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    Thank you mariag and ababb. I appreciate your responses. Today is better for him than yesterday and hopefully he will continue to feel well now until he has his next cycle of chemo. Had the scans yesterday and we are anxious to get the results.

    Just to add more stress to our lives, we learned today that our 7 year old grandson likely has type 1 diabetes. (So does his father, our son-in-law).

    Thank you all for your thoughts and prayers.
    Caregiver to 71 YO Husband Ex Stage SCLC:
    Chest x-ray Feb 2012 negative
    Chest X-ray Sept 27, 2012 large mass right lung. CT scan confirms lung mass with liver involvement.
    Oct 4 Liver biopsy confirms Ex Stage SCLC
    Pet Scan-large (6 X 8 cm) mass right lung with smaller masses both lungs, lymph node involvement, innumerable masses in liver, bony mets to L-4 & T-8
    Oct 17 Begin Chemo (Cisplatin-Etoposide)

  12. #12
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    I am sorry about your grandsons news, they are making remarkable progress with diabetes. Glad to hear that your husband is having good days, after chemo my mom felt really good, she was very fatigued but compared to how she felt when they started the fatigue was okay!
    Mom's xray July 2011 looks suspicious, CAT scan July 2011 SCLC ES diagnosed August 2011
    Etoposide Carboplatin begins august 24th 2011
    CAT December 2011 lung tumors gone or greatly reduced, liver tumor not detectable PCR January 2012 CAT March 2012 more shrinkage
    CAT July 2012 tumors growing July 2012 Topotecan CAT October 2012 Liver tumor has grown October 2012 Taxotere begins CT scan - no growth - brain mets, WBRT in February, CT Scan in March 2013 shows more growth, begin Gemzar.
    Mom passed away July 8, 2013.

  13. #13
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    Got report from Hubby's scans today--all good news! Primary tumor has reduced from 6 cm to 3 cm. Remaining pulmonary nodules stable. Liver masses are fewer and smaller with most measuring less than 2 cm. Brain CT shows nothing suspicious. So the plan is to continue with the Cisplatin and Etoposide for 2 more cycles and then scan again. Happy that he is responding to chemo.

    I "think" he was a bit disappointed however, as his first comment to me was that "they aren't gone". Later when I asked him if he was disappointed he said "No--just angry that I have this in the first place". I took his hand and told him that I loved him. Don't know what else to say.....

    In the meantime, we have one grandchild diagnosed with Type 1 diabetes at age 7 and another that needs to be tested for Cystic Fibrosis at age 3.

    Life is hard sometimes....
    Caregiver to 71 YO Husband Ex Stage SCLC:
    Chest x-ray Feb 2012 negative
    Chest X-ray Sept 27, 2012 large mass right lung. CT scan confirms lung mass with liver involvement.
    Oct 4 Liver biopsy confirms Ex Stage SCLC
    Pet Scan-large (6 X 8 cm) mass right lung with smaller masses both lungs, lymph node involvement, innumerable masses in liver, bony mets to L-4 & T-8
    Oct 17 Begin Chemo (Cisplatin-Etoposide)

  14. #14
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    Hi Toppermom,

    Great news to share on the scan. I think you responded perfectly. Sometimes we just want to fix things but this is one of those things that is out of our control. (Grrrrr, I hate not having control) Just being there, listening and loving is the best we can do some days. So sorry to hear about the kids. You're right, sometimes life sucks. Take care and God Bless.

    Irish
    Irish,
    Caregiver to my Dad, who was diagnosed in June 2010 with Stage 1V NSCLC with single met to brain,
    He sadly lost his battle in August 2010 and we miss his smiling Irish blue eyes terribly.
    My Dad's story:
    http://www.cancerforums.net/threads/...th-how-he-died.

  15. #15
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    Toppermom, my mom really thought that after we finished the 1st line of chemo the tumors would all be gone. She was very disappointed when they weren't, it wasn't until the 2nd line quit working that I think she really began to accept that there wasn't a cure. It is such a hard idea to wrap your mind around and I think it is more difficult for some than for others.

    So sorry about the kids, you are so right, sometimes life is just so hard, thinking and praying for you and yours.
    Mom's xray July 2011 looks suspicious, CAT scan July 2011 SCLC ES diagnosed August 2011
    Etoposide Carboplatin begins august 24th 2011
    CAT December 2011 lung tumors gone or greatly reduced, liver tumor not detectable PCR January 2012 CAT March 2012 more shrinkage
    CAT July 2012 tumors growing July 2012 Topotecan CAT October 2012 Liver tumor has grown October 2012 Taxotere begins CT scan - no growth - brain mets, WBRT in February, CT Scan in March 2013 shows more growth, begin Gemzar.
    Mom passed away July 8, 2013.

  16. #16
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    Thank you Irish and Franniedid. I appreciate your support. One of the things I am trying to gain from this forum is how to be the best possible caregiver as we travel this journey together.

    Today is good.....
    Caregiver to 71 YO Husband Ex Stage SCLC:
    Chest x-ray Feb 2012 negative
    Chest X-ray Sept 27, 2012 large mass right lung. CT scan confirms lung mass with liver involvement.
    Oct 4 Liver biopsy confirms Ex Stage SCLC
    Pet Scan-large (6 X 8 cm) mass right lung with smaller masses both lungs, lymph node involvement, innumerable masses in liver, bony mets to L-4 & T-8
    Oct 17 Begin Chemo (Cisplatin-Etoposide)

  17. #17
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    Good morning everyone, I thought I would post a quick update. My husband completed his 3rd cycle of chemo last Friday. He is doing amazingly well, although we are now at his "post chemo slump" period. Yesterday he had a couple of periods of feeling very weak and had to lie down after he finished his shower as he felt so weak and tired. His blood pressure fluctuates wildly. In the morning it might be 158/104 and then later in the day it drops to 90/50. It is usually when his blood pressure drops that he feels the worst and it even changes how he looks.

    He also has a familial tremor that has been well controlled for years. It is now MUCH worse to the point that he has trouble holding a glass of water or a coffee cup or signing his name. The nurse at the oncologist's office said that the chemo exacerbates that type of thing. Anyone else have that issue or ever heard of it? Hopefully that means that when he finishes this round of chemo it could improve????
    Caregiver to 71 YO Husband Ex Stage SCLC:
    Chest x-ray Feb 2012 negative
    Chest X-ray Sept 27, 2012 large mass right lung. CT scan confirms lung mass with liver involvement.
    Oct 4 Liver biopsy confirms Ex Stage SCLC
    Pet Scan-large (6 X 8 cm) mass right lung with smaller masses both lungs, lymph node involvement, innumerable masses in liver, bony mets to L-4 & T-8
    Oct 17 Begin Chemo (Cisplatin-Etoposide)

  18. #18
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    Toppermom, I'm glad to hear that your husband is responding so well to treatment. Thank you for sharing the good news.
    ---
    12/06/12 - Biopsy confirms SCLC w/ 2 brain mets. Waiting on onc appt.
    12/15/12 - Mom admitted to ER for disorientation. CT shows considerable edema around both brain masses. Begin IV dexamethasone.
    12/17/12 - Begin WBR
    1/13 - Follow-up brain MRI & Chest CT showed no progression and 25% shrinkage of brain mets. Began Chemo Cycle #1 Carboplatin/Etoposide + Neulasta
    2/13 - Began Chemo Cycle #2 - same regimen as before
    3/13 - Ending IV chemo - mom tolerated it poorly & scans show no regression of lung tumor. Brain mets now down 55-65%
    4/13 - PET shows numerous subcutaneous mets, lung tumor growing & suspicious activity in liver. Mom agrees to Etoposide in pill form.
    4/27 - Mom admitted to ICU for pneumonia, spent 10 days in hospital. Told 3-4 months by oncologist. Released to rehab to work on leg strength.
    5/25 - Mom comes home and we start hospice care. She sleeps 20+ hours/day. In no pain.
    6/7/13 - Mom passes peacefully - my brother & I holding her hands.

  19. #19
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    Thank you BabySteps, We are so grateful that he is responding and hopeful that it will continue. We all know this is an unpredictable entity, so we will enjoy this for as long as we are given it. One day at a time, but with extreme gratitude for each "good" day.

    I hope your mom will get some relief from her symptoms as well. Before my husband began his chemo, he had a constant dry, hacking cough, was short of breath, was nauseous and had no appetite and had increasing abdominal discomfort due to his enlarged liver. He feels MUCH better now since he has had significant shrinkage of his cancer.

    He is a patient at MD Anderson also and is getting his chemo at the satellite center in The Woodlands as that is more convenient for us. Can't say enough good things about them....
    Caregiver to 71 YO Husband Ex Stage SCLC:
    Chest x-ray Feb 2012 negative
    Chest X-ray Sept 27, 2012 large mass right lung. CT scan confirms lung mass with liver involvement.
    Oct 4 Liver biopsy confirms Ex Stage SCLC
    Pet Scan-large (6 X 8 cm) mass right lung with smaller masses both lungs, lymph node involvement, innumerable masses in liver, bony mets to L-4 & T-8
    Oct 17 Begin Chemo (Cisplatin-Etoposide)

  20. #20
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    Good to hear Toppermom! Keep us posted.
    Mom's xray July 2011 looks suspicious, CAT scan July 2011 SCLC ES diagnosed August 2011
    Etoposide Carboplatin begins august 24th 2011
    CAT December 2011 lung tumors gone or greatly reduced, liver tumor not detectable PCR January 2012 CAT March 2012 more shrinkage
    CAT July 2012 tumors growing July 2012 Topotecan CAT October 2012 Liver tumor has grown October 2012 Taxotere begins CT scan - no growth - brain mets, WBRT in February, CT Scan in March 2013 shows more growth, begin Gemzar.
    Mom passed away July 8, 2013.

 
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