Maintenance Therapy

djchaves
djchaves Member Posts: 20
in Lung Cancer #1
So the back story is that my dad, 70 years old, was diagnosed with NSLC in April 2012. He just had his 5th round of chemo yesterday with Carboplatin and Alimta. His first CT scan in June showed the larger tumor shrunk from 3.1cm to 2.9cm and the other smaller tumors had no difference. We went in yesterday for a CT and chemo. The CT revealed that there was basically no difference in the tumors since his last CT in June; the Dr. said he is stable. I know that’s good news but not exactly what we wanted to hear. The Dr. wants to continue his chemo for 2 more treatments, one of which he got yesterday and another in 3 weeks. After that another CT scan. If chemo doesn’t work they will begin maintenance therapy with avasitin (I think that’s what he said anyway). He said the goal will be to keep it stable. I didn’t know much about maintenance therapy but after researching it yesterday I have a bunch of questions for the Dr. Is or has anyone out there been maintenance therapy? Is it always combined with a chemo drug? Is the goal to just keep him stable forever? Do people with stable cancer live a normal life? How long will he be on this maintenance therapy? Are there any other chemo drugs we should try? I could go on and on. I’ll have to start my list for the Dr.  Any information/personal knowledge anyone could give me would be greatly appreciated.

Comments

  • djchaves
    djchaves Member Posts: 20
    #2
    Forgot to mention
    He has stage 4 with mets to the pluera which threw the option of radiation and the larger tumor is very close to the aorta.
  • Ex_Rock_n_Roller
    Ex_Rock_n_Roller Member Posts: 281 Member
    #3
    I haven't been on it ...
    ... but did have it offered up as an option about two years ago. My guy said it showed some benefit in people with stage 4 (I was 3B), and people who "want to feel like they're doing everything possible" (his wording) often choose to be on it. Since I could feel some perceptible shrinkage (main tumor was blocking one lung lobe before treatment) and they couldn't see anything else moving, I said no thanks for now.

    As you correctly state, your questions are for a doctor, but I'd risk commenting on the following, based on my understanding:

    "Is it always combined with a chemo drug?"
    - It IS a chemo drug, as far as I know. Without chemo, I think they'd be calling it something other than maintenance therapy.

    "Is the goal to just keep him stable forever?"
    - For as long as possible, yes. If the maintenance chemo seems like it's working very well over an extended time period, I would guess they might even consider reducing the frequency of treatment.

    "Do people with stable cancer live a normal life?"
    - I would say yes, they can, although of course if you're on maintenance chemo, you have to deal with whatever the chemo itself is doing to the rest of your system in addition to suppressing the cancer.

    "How long will he be on this maintenance therapy?"
    - I would imagine as long as he can tolerate it, and as long as it works (i.e. the cancer does not progress).

    All the very best to your dad!
  • djchaves
    djchaves Member Posts: 20
    #4
    Ex_Rock_n_Roller said:

    I haven't been on it ...
    ... but did have it offered up as an option about two years ago. My guy said it showed some benefit in people with stage 4 (I was 3B), and people who "want to feel like they're doing everything possible" (his wording) often choose to be on it. Since I could feel some perceptible shrinkage (main tumor was blocking one lung lobe before treatment) and they couldn't see anything else moving, I said no thanks for now.

    As you correctly state, your questions are for a doctor, but I'd risk commenting on the following, based on my understanding:

    "Is it always combined with a chemo drug?"
    - It IS a chemo drug, as far as I know. Without chemo, I think they'd be calling it something other than maintenance therapy.

    "Is the goal to just keep him stable forever?"
    - For as long as possible, yes. If the maintenance chemo seems like it's working very well over an extended time period, I would guess they might even consider reducing the frequency of treatment.

    "Do people with stable cancer live a normal life?"
    - I would say yes, they can, although of course if you're on maintenance chemo, you have to deal with whatever the chemo itself is doing to the rest of your system in addition to suppressing the cancer.

    "How long will he be on this maintenance therapy?"
    - I would imagine as long as he can tolerate it, and as long as it works (i.e. the cancer does not progress).

    All the very best to your dad!

    Thank you for the
    Thank you for the information!
  • sirwmscott
    sirwmscott Member Posts: 12
    #5
    Maintenance Therapy
    My Mother was diagnosised with NSCLC July 2011 at age of 79 with mets to pluera, ribs and lymph nodes. She had four treatments of carboplatin and alimta and 9 treatments of "maintenance" Alimta. Her last treatment was in June 2012. She will have a CT in September to see if there is any progression. If not, she will opt for no additional maintnence. If there is, she will probably go back to Alimta.

    The original treatment was similar to you Father - shrunk some but then just stable. She went off the Alimta for a break. The Alimta (or steriods) made her very tired and her stomach achy (which did not resolve with the many anti-nausea medicines). Although it has taken some time, she is almost back to her very active self. She doesn't feel sick at all, just needs to take a nap sometime during the day for an hour or so.

    We are thankful for these "miracle" drugs. When she was first diagnosed, they considered not treating at all! She is also extremely lucky to have no other health issues - heart, diabetes, high blood pressure, etc.

    My favorite story to tell is when she was filling out a form that asked her to rate her health, she wrote "there is nothing wrong with me, except I have stage iv LC".

    I hope your Father has as good, if not better, experience than my Mother has. There really is room for hope.
  • djchaves
    djchaves Member Posts: 20
    #6
    sirwmscott said:

    Maintenance Therapy
    My Mother was diagnosised with NSCLC July 2011 at age of 79 with mets to pluera, ribs and lymph nodes. She had four treatments of carboplatin and alimta and 9 treatments of "maintenance" Alimta. Her last treatment was in June 2012. She will have a CT in September to see if there is any progression. If not, she will opt for no additional maintnence. If there is, she will probably go back to Alimta.

    The original treatment was similar to you Father - shrunk some but then just stable. She went off the Alimta for a break. The Alimta (or steriods) made her very tired and her stomach achy (which did not resolve with the many anti-nausea medicines). Although it has taken some time, she is almost back to her very active self. She doesn't feel sick at all, just needs to take a nap sometime during the day for an hour or so.

    We are thankful for these "miracle" drugs. When she was first diagnosed, they considered not treating at all! She is also extremely lucky to have no other health issues - heart, diabetes, high blood pressure, etc.

    My favorite story to tell is when she was filling out a form that asked her to rate her health, she wrote "there is nothing wrong with me, except I have stage iv LC".

    I hope your Father has as good, if not better, experience than my Mother has. There really is room for hope.

    very similar
    Hi sirwmscott. It's comforting to hear from someone with such a similar case as my dad's. He also is in very good health besides the cancer. My dad's chemo side effects aren't too damaging. He usually begins to feel crappy a couple days after chemo and it lasts for about a week. He is however very tired and being an old school Portuguese man he knows nothing but work so I feel it's finally hitting him that he can't do much of anything, which is weird for me to see because all my life he was always outside or in the basement doing something. So I have a couple questions if you don't mind. Did they offer your mom any second line treatment? I'm wondering why go to maintenance therapy, could we try another line of chemo to see if the tumors will shrink? Is maintenance therapy the last hope, like nothing else will work so lets just try and keep it as is for however long we can? How often did your mom go for the maintenance therapy, same as when she had the regular chemo (my dad goes every 3 weeks)? We're going for his 6th and last chemo treatment next wednesday then a ct scan three weeks after that. Thank you so much for sharing with me!
  • ldoman
    ldoman Member Posts: 9
    #7
    Maintenance Therapy
    I was diagnosed with stage 4 NSCLC last Feb 2011, finished six rounds of carboplatin/Alimta chemo every 21 days. After ctcscan showed stable I had a three months break and have Alimta chemo every three weeks.Alimta as a maintenance therapy is also every 21 days. I just finished my fourth Alimta infusion last Aug 16,2012. I am scheduled to have a ctscan on Aug 31. My oncologist said if it is stable I am going to have a break, if not I have to have another option (I guess another chemo combination). I am feeling good and hoping for a good result. It looks like your father has the same combination treatment I have. I guess he will have an Alimta maintenance therapy after his protocol. It is less toxic and mild side effects. Good luck!!!
  • djchaves
    djchaves Member Posts: 20
    #8
    ldoman said:

    Maintenance Therapy
    I was diagnosed with stage 4 NSCLC last Feb 2011, finished six rounds of carboplatin/Alimta chemo every 21 days. After ctcscan showed stable I had a three months break and have Alimta chemo every three weeks.Alimta as a maintenance therapy is also every 21 days. I just finished my fourth Alimta infusion last Aug 16,2012. I am scheduled to have a ctscan on Aug 31. My oncologist said if it is stable I am going to have a break, if not I have to have another option (I guess another chemo combination). I am feeling good and hoping for a good result. It looks like your father has the same combination treatment I have. I guess he will have an Alimta maintenance therapy after his protocol. It is less toxic and mild side effects. Good luck!!!

    hi, your situation is
    hi, your situation is similar to my dads. I have some questions if you don't mind: Did your tumor(s) shrink at all? Did you opt for the 3 month break? My father is on the same chemo cocktail as you however his dr. said the maintenance therapy will be Avastin. I've read that it can be together with Alimta but the dr. didn't mention that so that's one of my questions for him. Can I also ask if you (or anyone else reading this) ever expereinced any chest, shoulder or arm pain/discomfort. My dad gets it once in a while, we ended up going to the ER at the request of his nurse to make sure it wasn't heart related, which it wasn't. I'm assuming it's either one of the many chemo side effects or was wondering if it could happen when he pushes himself too hard (still cuts grass, etc.). I began writing every little thing down to see if i come across a pattern.

    Thank you, and good luck on the 31st! Keep us updated.

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