Father with terrible prognosis

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Father with terrible prognosis

by ddod125 on Wed Mar 25, 2009 12:00 AM

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My father has been diagnosed with small cell lung cancer stage 4.  The cancer has spread to his lymphatic system and on to his adrenal glands and brain.  He has over 50 metastatic tumors in his brain and we think he may have liver cancer as well judging from the side effects.  He has been doing radiation for the brain for 8 treatments with two left to go and is supposed to undergo Chemotherapy after the radiation.  My family is really wondering whether or not the chemotherapy is worth it, and if its more just about quality of life at this point.  My dad is 56 and has smoked 2 packs a day since he was 20.  He just found out 2 weeks ago that he had all this and we are all devastated.  I would appreciate any feedback especially if anyone has had a similar prognosis.  We don't know how long he has left and we don't know what we should do.  Any feedback would be appreciatied

RE: Father with terrible prognosis

by DebbiM on Sat Mar 28, 2009 12:00 AM

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I am in a similar predicament.  My dad just turn 66 -  he retired last April.  He too was a smoker.....smoked since he was late teens, quit when my oldest daughter (now 9) was born, but eventually picked the habit back up. Probably over the last few years he's smoked 1/3 pack per day -- still way too much.

 He was diagnosed in early December with small cell lung cancer.  He'd had a chest x-ray the December before with nothing showing on it. The tumor in his lung/chest was 8 1/2 cm. He had 36 radiation treatments to shrink - it's now 5 1/2 cm.  Right before Christmas they started chemo - carboplatinum and VP16, which is a common first round treatment.  He was sick his first time, then 2 - 4 were fine.  No problems - when he was doing radiation at the same time he was very very tired and lost his appetite, but it all seemed to turn around.  About 5 wks ago he started having pain in his hip area which started as minor but got much worse.  Long story short, a MRI showed a new (or maybe it was there already) tumor.  So, they threw out that chemo he had been and now Tuesday he's to start a new kind - Topotecan.

 He initially had only the one tumor in his chest.  He had "spots" on various other parts (liver, adrenal gland, maybe spine -- I honestly can't remember all).  Now the adrenal gland tumor has grown and he has new spots on ribs.

I don't know which way is up most days. My dad does NOT want to die.  I've been doing research on different places to go.  We are in Indiana which has IU Medical Center - Lance Armstrong received his cancer treatment there.  I've also looked into MD Anderson Center in Texas.  We've got to do something.

Unfortunately there is no cure, but there is hope of an extended qualify of life.  Our radiologist says the average lifespan is 6 mths - 2 years with this type of cancer (we do NOT ask about my dad in particular because it doesn't help matters) but he has people 5 and 6 years out in his "herd" as he calls it too.

He used to have his own practice where he incorporated alternative treatments.  We have not done these yet because the chemo dr doesn't believe in them and doesn't want them potentially interfering with the chemo.  We're talking about shark cartilage, blue-green algae, mushrooms and green tea - nothing too off the wall.

We lost my sister-in-law's husband to this awful cancer in October after just under a year of the battle.  He was only 35 so he fought like hell.  The doctors kept screwing around and he was in so much pain. My sister-in-law, through her pastor, touched base with a chiropractor in Florida. I don't know all the details, but people apparently swore by this woman as far as the herbs, etc she used and how she seemed to have quite an impact with cancer.   It was a long shot, but they went to see her.  The dr. was honest with them and his condition as it was really bad at the time. Although he didn't survive, again, he was in bad shape then, I can testify that the last few weeks of his life were pain free, without any type of pain medication other than the herbs, and he had an excruciating amount of pain prior to that.

The one thing I will stress.......DO NOT GIVE UP AND TAKE ONE OPINION.  There are a lot of options out there.  I had even contacted the Cancer Treatment Centers of America.

My parents had talked about not having chemo, however, my problem with that is that it’s not just that simple.  Cancer gets uglier and uglier as it progresses.  I’ve seen this with my mother-in-law who passed away from breast cancer and with my sister-in-law’s husband.  If pain were not involved, it might be an easier decision, but it gets worse as the disease progresses and sometimes the chemo will help with that.  Ultimately it’s your dad’s decision, but the rest of the family needs to be supportive and help gather the info for him to make an informed decision.

I’m so sorry for you.

Debbi

 

RE: Father with terrible prognosis

by CancerStrike2 on Wed Apr 01, 2009 12:00 AM

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On 3/28/2009 DebbiM wrote:

I am in a similar predicament.  My dad just turn 66 -  he retired last April.  He too was a smoker.....smoked since he was late teens, quit when my oldest daughter (now 9) was born, but eventually picked the habit back up. Probably over the last few years he's smoked 1/3 pack per day -- still way too much.

 He was diagnosed in early December with small cell lung cancer.  He'd had a chest x-ray the December before with nothing showing on it. The tumor in his lung/chest was 8 1/2 cm. He had 36 radiation treatments to shrink - it's now 5 1/2 cm.  Right before Christmas they started chemo - carboplatinum and VP16, which is a common first round treatment.  He was sick his first time, then 2 - 4 were fine.  No problems - when he was doing radiation at the same time he was very very tired and lost his appetite, but it all seemed to turn around.  About 5 wks ago he started having pain in his hip area which started as minor but got much worse.  Long story short, a MRI showed a new (or maybe it was there already) tumor.  So, they threw out that chemo he had been and now Tuesday he's to start a new kind - Topotecan.

 He initially had only the one tumor in his chest.  He had "spots" on various other parts (liver, adrenal gland, maybe spine -- I honestly can't remember all).  Now the adrenal gland tumor has grown and he has new spots on ribs.

I don't know which way is up most days. My dad does NOT want to die.  I've been doing research on different places to go.  We are in Indiana which has IU Medical Center - Lance Armstrong received his cancer treatment there.  I've also looked into MD Anderson Center in Texas.  We've got to do something.

Unfortunately there is no cure, but there is hope of an extended qualify of life.  Our radiologist says the average lifespan is 6 mths - 2 years with this type of cancer (we do NOT ask about my dad in particular because it doesn't help matters) but he has people 5 and 6 years out in his "herd" as he calls it too.

He used to have his own practice where he incorporated alternative treatments.  We have not done these yet because the chemo dr doesn't believe in them and doesn't want them potentially interfering with the chemo.  We're talking about shark cartilage, blue-green algae, mushrooms and green tea - nothing too off the wall.

We lost my sister-in-law's husband to this awful cancer in October after just under a year of the battle.  He was only 35 so he fought like hell.  The doctors kept screwing around and he was in so much pain. My sister-in-law, through her pastor, touched base with a chiropractor in Florida. I don't know all the details, but people apparently swore by this woman as far as the herbs, etc she used and how she seemed to have quite an impact with cancer.   It was a long shot, but they went to see her.  The dr. was honest with them and his condition as it was really bad at the time. Although he didn't survive, again, he was in bad shape then, I can testify that the last few weeks of his life were pain free, without any type of pain medication other than the herbs, and he had an excruciating amount of pain prior to that.

The one thing I will stress.......DO NOT GIVE UP AND TAKE ONE OPINION.  There are a lot of options out there.  I had even contacted the Cancer Treatment Centers of America.

My parents had talked about not having chemo, however, my problem with that is that it’s not just that simple.  Cancer gets uglier and uglier as it progresses.  I’ve seen this with my mother-in-law who passed away from breast cancer and with my sister-in-law’s husband.  If pain were not involved, it might be an easier decision, but it gets worse as the disease progresses and sometimes the chemo will help with that.  Ultimately it’s your dad’s decision, but the rest of the family needs to be supportive and help gather the info for him to make an informed decision.

I’m so sorry for you.

Debbi

 


Hi Debbi:

 I want to share with you my story. Mom was diagnosis of SCLC in oct 08 after a long mis-diagnosis (though the hi-blood pressure made her coughed in blood as she is not a smoker or 2nd hand smoker either).  She just finished her Chemo in late Feb 09 and ready for radiation theraphy. She did it well, not much of side effects incurred. However, Chemo did not improve much of her terminal condition but the pain level.

In parallel with Chemo, we also tried different herbs on her - green tea, blue/rasp/black berry, ginger and lingzhi - purple mushroom, etc.  Only improve her appetite.  Last week she got a cold-like symptom, coughed out in blood mixed with phlegms.  We took her in ER.  CTscan showed a light pneumonia and new tumor on the left side. Her oncologist told us Today that her condition aint good and she wont do more chemo on my mom but requested us to resume my mom's radiation theraphy session.

I am so devastated, sad and scared as we just lost Dad in late 07 for colon cancer. Same principal, mis-diagnosis and doctors'egos that caused my Dad's life...  However, this time we wont give up.  We plan to take her to the City of Hope for clinical trials (they have a lot more than other places) as UCLA medical center recommended (appointed) us a fresh out of boat Lung Doctor as MCAnderson is too far for mom to be travel to for her current disable condition.  Did you enroll your Dad to McAnderson yet?   Call as many medical centers as you can cuz who-ever accept him in first, he would have a better chance of prolong his life, right?

I pray so many nights and beg Gods or others to not take my mom away from us. Her time is not done at this earth yet.  We will fight along with her.

God bless y'all.

Thanks for reading mine as I am watching my mom sleeping now.

Victoria

 

RE: Father with terrible prognosis

by Tham on Mon Apr 06, 2009 12:00 AM

Quote | Reply

 

On 3/28/2009 DebbiM wrote:

  So, they threw out that chemo he had been and now Tuesday he's to start a new kind - Topotecan.

 

You can discuss with his oncologist if they could use a weekly
schedule for topotecan instead of the usual 5-day schedule.

http://www.asco.org/ASCO/Abstracts+%26+Virtual+Meeting/Abstracts?&vmview=abst_detail_view&confID=40&abstractID=34517












   
 
    


 

 

RE: Father with terrible prognosis

by Tham on Mon Apr 06, 2009 12:00 AM

Quote | Reply

 

The link for topotecan above :

 http://www.asco.org/ASCO/Abstracts+%26+Virtual+Meeting/Abstracts?&vmview=abst_detail_view&confID=40&abstractID=34517

 

Topotecan - Improved Weekly Protocol

by Tham on Mon Apr 06, 2009 12:00 AM

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 Topotecan: Weekly intravenous (IV) schedule similar to standard 5-day
  IV schedule as second-line therapy for relapsed small cell lung cancer
  (SCLC)--A Minnie Pearl Cancer Research Network phase II trial.

  /Journal of Clinical Oncology/, 2006 ASCO Annual Meeting
        Proceedings Part I. Vol 24, No. 18S (June 20 Supplement), 2006: 7083


      Author(s):

        D. L. Shipley, J. D. Hainsworth, D. R. Spigel, J. R. Gray, J. H.
        Barton, A. Switzer, M. Nicolau, T. Marsland, G. Joseph, F. A. Greco


      Abstract:

    *Background: *Topotecan IV weekly produces significantly less
        myelotoxicity than the standard 5-day IV schedule and appears as
        active as the 5-day schedule in patients (pts) with relapsed
        ovarian cancer. Topotecan 5-day IV schedule is the standard for
        second-line therapy for sensitive relapse SCLC. *Methods: *The
        primary endpoints of this phase II trial were to determine the
        response rate and toxicity of topotecan IV weekly as second-line
        therapy in patients with sensitive relapse (SR) and resistant
        relapse (RR) SCLC. Topotecan 4mg/m^2 IV over 30 minutes for 12
        consecutive weeks was planned. Dose modifications were made
        based on toxicity. Pts were evaluated for response after 4
        weeks; at least 3 weekly treatments were required to be
        evaluable. *Results: *A total of 103 pts (59 SR; 44 RR) were
        enrolled: 56 men, 48 women; age range 42-86 (median 65);
        performance status 0=18, 1=69, 2=16, 3=1. 47 pts with SR and 34
        pts with RR were evaluable for response by WHO criteria. For SR,
        3 pts had partial response (6.4%, 95% CI 1.3%-17.5%), 17 pts had
        stable disease (7 had minor responses with tumor shrinkage of
        39%, 27%, 21%, 20%, 20%, 7%, and 3%, respectively). Using RECIST
        criteria 5 pts had PR (13%, 95% CI 6%-25%). For RR, 1 pt had a
        CR (3%, 95% CI 0.1%-15.3%), 6 pts had stable disease (2 had
        minor responses with 36%, 5% tumor shrinkage). Grade 3/4
        neutropenia/thrombocytopenia was seen in 17 and 22pts, grade 3
        infection 6 pts; grade 3/4 fatigue 16 pts. There was 1
        treatment-related death. Median and 1-year survival for all
        patients was 4.5 months (SR = 5.6 months; RR 3.2 months, p =
        0.05) and 19% (SR = 22%; RR = 10%). There was no difference in
        survival for PR versus stable pts, and PR/stable had 1-year
        survival of 46% compared to PD of 9% (p < 0.0001). *Conclusions:
        *Topotecan IV weekly has similar activity to the standard 5-day
        IV schedule in SR SCLC, and considerably less myelotoxicity.
        These data support the weekly schedule for standard therapy of
        SR SCLC, and further study of weekly topotecan as a component of
        combination therapy for SCLC.**

 

Amrubicin

by Tham on Mon Apr 06, 2009 12:00 AM

Quote | Reply

The best single-agent chemo protocol for SCLC currently
is probably amrubicin, even in patients refractory to other
drug regimens.

http://www.asco.org/ASCO/Abstracts+%26+Virtual+Meeting/Abstracts?&vmview=abst_detail_view&confID=40&abstractID=32245






 

 

 

 

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