Small cell lung cancer

pajami62
pajami62 Member Posts: 11
edited March 2014 in Lung Cancer #1
My mom has been diagnosed with small cell lung cancer. We have started the Chemo treatments with Carboplatin & etoposide. It's a 21 day cycle, 3 days of chemo, 18 days off. The first chemo is done and we are on day 5 of the 18 off. Yesterday we brought her home from the hospital after a 10 day stay that had so many ups and downs I finally slept last night for six hours. My mom had no side effects from the chemo, except for the mouth sores. I'm trying to stay ahead of the cancer, can anyone tell me if the future treatments will have more side effects? When will the hair loss start? What is quality of life, during the 18 days like? Right now she is happy to be home, but I think she is feeling that she needs to stay inside, that she can't do anything...fun.
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Comments

  • myjd65
    myjd65 Member Posts: 7
    Small cell lung cancer
    Hi Pajami62,
    Welcome to the discussion board!
    My Dad was diagnosed with non small cell lung cancer in May. He is on 6 cycles of chemo using the same drugs as your mom. He has finished the first 2 cycles. Now he is under going 12 radiation treatments and has finished 7 so far.

    After the second cycle of chemo my Dad lost his hair and has nausea. He did not get mouth sores. His doctors have been great.

    There is so much information out there from the American Cancer Society.

    Lungcancer.org
    is a great site they have a section lung cancer 101.
    Here is the link to their site:

    http://www.lungcancer.org/reading/

    Another website medicine.net has great infromation and the answer to many questions that you may have. Here is their link:

    http://www.medicinenet.com/lung_cancer/article.htm

    The Mayo Clinic also have a great website...here is their link:

    http://www.mayoclinic.com/health/lung-cancer/DS00038

    I just read an article stating exercise is very good (if the person it up to it)for people going through cancer treatment.

    Best of luck to you and I will pray for you, your mom and your family.
    Keep believing and be positive.

    Lots of hugs,
    myjd65
  • trft
    trft Member Posts: 48
    I had chemo for non-small cell adenocarcinoma lung cancer.
    I plead considerable ignorance, and I wish you and your mom well.

    Quality of life is something I don't understand very well. I understand it better now then before I got cancer, still I don't understand it well.

    Oh, I will tell you one thing. So I learned I was going to be having chemo (taxol and carboplatin) and went on the web and saw how Lance Armstrong really exercised a lot while he was on chemo. Being a guy I was impressed. Being basically a very lazy guy the day before chemo I hit the treadmill hard. After my first chemo, day one no problem because of the steroids. Day two, every bone in my lower body was aching.

    Hang in there!

    trft aka Tim
  • soccerfreaks
    soccerfreaks Member Posts: 2,788
    Pajami62
    There is a natural tendency to want to stay out of the sun immediately after treatment. Sometimes, the drugs being taken advise that, in fact. Other times, we simply sort of believe that the sun will only add to our problems.

    I would encourage your mom, as energy permits, to get outside, if only to sit and watch the world around her.

    Some folks on this site have advised that long drives with loved ones helped them cope. They did nothing but sit and enjoy the world around them, while someone else drove.

    It all depends upon your mom's strength, and that, my friend, is up to mom. If she says she is not up for something, I would go with that.

    You are not on your own, however. Read the posts and responses here, and you will get a very good idea of what people have gone through, what they are going through, what they will go through.

    Regarding future side effects, I can pretty much guarantee them. If she is experiencing side effects, they are apt to continue and maybe even worsen. Treatment is cumulative, after all. The more of it you get, the more it stays with you, and the more you are going to feel it.

    The good news, to begin with, is that mom apparently HAS no side effects, other than the curious mouth sores. Some people experience acute nausea and even allergic reactions to carboplatin, so if mom is not, that is good news (bear in mind that this may change down the road).

    More good news, the cycle your mom is on should allow her to enjoy most of those 18 days in relief. In my experience, the effects of chemo, the truly nasty ones, if they are to come at all, last about three days, maybe four. Mom should have a very good, if tired, 14 days before the next treatment.

    Even more good news, when I was submitted to carboplatin and taxol, I did indeed lose my hair (actually I went to a salon, since my barbershop was busy, and hooked up with a survivor quite by accident, who advised that she would not shave me bald but give me a fuzz cut :)). I never did, as a result, lose all of my hair. Better news: IT DOESN'T MATTER!

    Bald is beautiful!

    Be sure that mom stays hydrated. That is pivotal. Do not think that sports drinks will do the job: they actually leach important elements from the body. OncoMan suggested to me that seltzer water is the best hydration you can get.

    Be sure that mom eats. Chemotherapy may curb the appetite (although the steroid they mix in may very well increase it). Make sure that she eats well, and that she remains fit for the therapy.

    Talk to OncoMan and perhaps a nutritionist, if she has one, about ways to replenish whatever resources are sucked up by the chemo.

    Eventually, it is a possibility that mom's white blood cell count will be too low to have treatment on a given day. This is not abnormal. It is not unusual for them to suggest a neupogen shot, for example, to boost the WBC.

    It is not unusual for platelets to run low. This happened to me, as did the above. The platelet issue, apparently, is one you have to sit and wait on. But trust me, for mom it will feel like a vacation, if it happens, and it will not upset the applecart. They will probably extend the duration, but they are aware that these things happen and have to be dealt with.

    Bad news: small cell lung cancer is much more aggressive than others. Good news: I know quite a few survivors of small cell lung cancer.

    In any event...assure mom that fun is allowed :). Encourage her to get out and do things that she enjoys doing. As trft suggests, and as I think cabbott would advise too (and you will see her here eventually), if your mom can get out and walk, that is what she needs to do.

    Know that I understand your job is more difficult than your mom's is. I'm pretty sure she does too. I would much rather have it than care for it.

    Be sure to take care of yourself while caring for mom. You will be a better caregiver if you care for the giver.

    Best wishes to mom and her family.

    Take care,

    Joe
  • hansie
    hansie Member Posts: 37
    my wife also has small
    my wife also has small cell,weve ben fighting it for almost two years.The first rounds of chemo are tough,barb started loosing hair after 2nd treatment,and shaved her head by the fourth.We had a lot of ups n downs too,in the beginning,but it does pass.Afterwards they will want to do pci(radiate brain)let them its not too bad and verry effective.Watch the sun!barb went to one of our sons baceball games last year,long sleeve shirt n long pants.She thought nothing of flip flops,untill the tops of her feet roasted.It really changes your reaction to the sun, so be careful.
  • pajami62
    pajami62 Member Posts: 11
    myjd65 said:

    Small cell lung cancer
    Hi Pajami62,
    Welcome to the discussion board!
    My Dad was diagnosed with non small cell lung cancer in May. He is on 6 cycles of chemo using the same drugs as your mom. He has finished the first 2 cycles. Now he is under going 12 radiation treatments and has finished 7 so far.

    After the second cycle of chemo my Dad lost his hair and has nausea. He did not get mouth sores. His doctors have been great.

    There is so much information out there from the American Cancer Society.

    Lungcancer.org
    is a great site they have a section lung cancer 101.
    Here is the link to their site:

    http://www.lungcancer.org/reading/

    Another website medicine.net has great infromation and the answer to many questions that you may have. Here is their link:

    http://www.medicinenet.com/lung_cancer/article.htm

    The Mayo Clinic also have a great website...here is their link:

    http://www.mayoclinic.com/health/lung-cancer/DS00038

    I just read an article stating exercise is very good (if the person it up to it)for people going through cancer treatment.

    Best of luck to you and I will pray for you, your mom and your family.
    Keep believing and be positive.

    Lots of hugs,
    myjd65

    Thanks!
    I can't thank you enough for all the info and new websites. I really appreciate the information. I felt so uninformed but your information and that from others, has helped me breath a little bit and realize that there is lots of help out there.

    Thanks again, for the information and prayers. I will also keep you, your dad and ALL cancer patients in my prayers.

    Take care,
    pjm
  • pajami62
    pajami62 Member Posts: 11
    trft said:

    I had chemo for non-small cell adenocarcinoma lung cancer.
    I plead considerable ignorance, and I wish you and your mom well.

    Quality of life is something I don't understand very well. I understand it better now then before I got cancer, still I don't understand it well.

    Oh, I will tell you one thing. So I learned I was going to be having chemo (taxol and carboplatin) and went on the web and saw how Lance Armstrong really exercised a lot while he was on chemo. Being a guy I was impressed. Being basically a very lazy guy the day before chemo I hit the treadmill hard. After my first chemo, day one no problem because of the steroids. Day two, every bone in my lower body was aching.

    Hang in there!

    trft aka Tim

    Hope you are doing well
    This whole cancer thing is so frightening and I so appreciate your kind words. Yesterday, my mom complained of being so week (she just had been released for a 10 day hospital stay) But with your words in my head, I just asked her to walk around the house, and we made it her 'workout' for the day. After a shower and additional rest, I could see my mom coming back.

    I hope you are doing well yourself. I'm a newbie at this, but I so appreciate the care and concern, that I want to help others as well. You take care of you!

    Thanks,
    pjm
  • pajami62
    pajami62 Member Posts: 11

    Pajami62
    There is a natural tendency to want to stay out of the sun immediately after treatment. Sometimes, the drugs being taken advise that, in fact. Other times, we simply sort of believe that the sun will only add to our problems.

    I would encourage your mom, as energy permits, to get outside, if only to sit and watch the world around her.

    Some folks on this site have advised that long drives with loved ones helped them cope. They did nothing but sit and enjoy the world around them, while someone else drove.

    It all depends upon your mom's strength, and that, my friend, is up to mom. If she says she is not up for something, I would go with that.

    You are not on your own, however. Read the posts and responses here, and you will get a very good idea of what people have gone through, what they are going through, what they will go through.

    Regarding future side effects, I can pretty much guarantee them. If she is experiencing side effects, they are apt to continue and maybe even worsen. Treatment is cumulative, after all. The more of it you get, the more it stays with you, and the more you are going to feel it.

    The good news, to begin with, is that mom apparently HAS no side effects, other than the curious mouth sores. Some people experience acute nausea and even allergic reactions to carboplatin, so if mom is not, that is good news (bear in mind that this may change down the road).

    More good news, the cycle your mom is on should allow her to enjoy most of those 18 days in relief. In my experience, the effects of chemo, the truly nasty ones, if they are to come at all, last about three days, maybe four. Mom should have a very good, if tired, 14 days before the next treatment.

    Even more good news, when I was submitted to carboplatin and taxol, I did indeed lose my hair (actually I went to a salon, since my barbershop was busy, and hooked up with a survivor quite by accident, who advised that she would not shave me bald but give me a fuzz cut :)). I never did, as a result, lose all of my hair. Better news: IT DOESN'T MATTER!

    Bald is beautiful!

    Be sure that mom stays hydrated. That is pivotal. Do not think that sports drinks will do the job: they actually leach important elements from the body. OncoMan suggested to me that seltzer water is the best hydration you can get.

    Be sure that mom eats. Chemotherapy may curb the appetite (although the steroid they mix in may very well increase it). Make sure that she eats well, and that she remains fit for the therapy.

    Talk to OncoMan and perhaps a nutritionist, if she has one, about ways to replenish whatever resources are sucked up by the chemo.

    Eventually, it is a possibility that mom's white blood cell count will be too low to have treatment on a given day. This is not abnormal. It is not unusual for them to suggest a neupogen shot, for example, to boost the WBC.

    It is not unusual for platelets to run low. This happened to me, as did the above. The platelet issue, apparently, is one you have to sit and wait on. But trust me, for mom it will feel like a vacation, if it happens, and it will not upset the applecart. They will probably extend the duration, but they are aware that these things happen and have to be dealt with.

    Bad news: small cell lung cancer is much more aggressive than others. Good news: I know quite a few survivors of small cell lung cancer.

    In any event...assure mom that fun is allowed :). Encourage her to get out and do things that she enjoys doing. As trft suggests, and as I think cabbott would advise too (and you will see her here eventually), if your mom can get out and walk, that is what she needs to do.

    Know that I understand your job is more difficult than your mom's is. I'm pretty sure she does too. I would much rather have it than care for it.

    Be sure to take care of yourself while caring for mom. You will be a better caregiver if you care for the giver.

    Best wishes to mom and her family.

    Take care,

    Joe

    Thank you, thank you, thank you
    Joe-
    You are amazing. After reading your post and the others I was so encouraged. Sometimes I felt like I was fighting the unfightable fight. But as I told trft, I got mom up and moving and cleaned up and I saw my mom again. She's even planning on going to church, go out for dinner tomorrow and requested a pedicure. So I think with little steps she will see that this is worth fighting.

    You had so many answers to my questions and the ones that I hadn't even thought of yet. Thanks for helping me to better understand. It all seems to scary when you are first hearing everything that the head spins leave one dizzy with fear and anxiety.

    I was truly moved by the responses that I got. I beleive that people should help people and boy that came through from you and others. I hope that you are well and look forward to hearing from you again.
    Take care,
    Pam
  • pajami62
    pajami62 Member Posts: 11
    hansie said:

    my wife also has small
    my wife also has small cell,weve ben fighting it for almost two years.The first rounds of chemo are tough,barb started loosing hair after 2nd treatment,and shaved her head by the fourth.We had a lot of ups n downs too,in the beginning,but it does pass.Afterwards they will want to do pci(radiate brain)let them its not too bad and verry effective.Watch the sun!barb went to one of our sons baceball games last year,long sleeve shirt n long pants.She thought nothing of flip flops,untill the tops of her feet roasted.It really changes your reaction to the sun, so be careful.

    Treatment is the same
    The doctor said that this treatment is effective for small cell and they too, indicated that the might do some radiation. Last week they wanted to do the MRI of the brain, to see if there were cells in the brain, but it was cancelled because of some respiratory(sp?) and heart failure. So, it is planned for the near future, as well as a bone density test. But they mentioned that after the three rounds of chemo they might do the radiation. I've read that some people cut their hair short, so that the hair loss is not so traumatic, but a lady of 79 just doesn't understand or want to accept baldness. This could be an issue...
    I hope your wife is well, and that you and family are holding up well. TWO years was encouraging to me...

    Thanks,
    pjm
  • mcbriz
    mcbriz Member Posts: 14
    My mother was also diagnosed
    My mother was also diagnosed in mid-May with SCLC and just finished her second cycle last week. Like with your mom, the first cycle was done in the hospital after 12 day stay for what was initially thought to be pneumonia, then respiratory issues, and fluid build-up in the lung cavity. She is also on carboplatin & etoposide.

    After the first cycle she was weak, but she came home on oxygen b/c her lungs were so compromised from the fluid build-up. As the chemo kicked in over the next week, the fluid slowed, her oxygen levels increased and her energy returned. She did start to lose her hair after about two weeks, and also did the buzz cut. I think she looks cute and has the beautiful face to pull it off.

    Two side effects (her doc calls them the "normal abnormal") that surprised us were:

    (1) about 3 days after her last day of cycle 1, she awoke to the bottoms of her feet being on fire, red, blistered and eventually peeling. So bad, she couldn't even walk on them. They prescribed neuontin and daily A&D ointment. They improved by cycle 2, but I hope they don't act up again b/c it was very painful.

    (2) However, more painful were the blood clots in her right leg (DVT). Apparently this is a common effect of SCLC and very dangerous. It took a few days to diagnose, as she had pain before they could see the clots on the ultrasound. Another hospital stay, but she's on blood thinners and was able to drive herself to the last day of chemo on cycle 2.

    As of today, 3 days after cycle 2 completed she is wiped out. I think b/c cycle 1 went so well (besides the feet) her expectations were high and she made family plans this weekend that she couldn't attend. Be prepared for the ups and downs and talking your mom through the disappointment of having to cancel activities if she's too tired. It will be a learning process for everyone. I imagine as each cycle progresses, that we should expect the following week to be a time for rest and recovery.

    I don't know if your dad or another partner is in her life, but keep an eye on them as well. This has been very hard on my dad - although he's handling it well, he struggles. A little back story - my mom had Hodkins when she was 25-26 and in the early 70s it was often fatal. At the right place, at the right time, she was part of a research program at Georgetown University and it saved her life. I think being a survivor is giving her great strength this time around, but seems to be hard on dad to go through again.

    I wish you all the best as you and your family tackle this challenge. I'm happy to have found this board, and to have found someone who is about on the same diagnosis timeline as my mother. Think positively for a smooth and complete remission - that's my focus right now!
  • pajami62
    pajami62 Member Posts: 11
    mcbriz said:

    My mother was also diagnosed
    My mother was also diagnosed in mid-May with SCLC and just finished her second cycle last week. Like with your mom, the first cycle was done in the hospital after 12 day stay for what was initially thought to be pneumonia, then respiratory issues, and fluid build-up in the lung cavity. She is also on carboplatin & etoposide.

    After the first cycle she was weak, but she came home on oxygen b/c her lungs were so compromised from the fluid build-up. As the chemo kicked in over the next week, the fluid slowed, her oxygen levels increased and her energy returned. She did start to lose her hair after about two weeks, and also did the buzz cut. I think she looks cute and has the beautiful face to pull it off.

    Two side effects (her doc calls them the "normal abnormal") that surprised us were:

    (1) about 3 days after her last day of cycle 1, she awoke to the bottoms of her feet being on fire, red, blistered and eventually peeling. So bad, she couldn't even walk on them. They prescribed neuontin and daily A&D ointment. They improved by cycle 2, but I hope they don't act up again b/c it was very painful.

    (2) However, more painful were the blood clots in her right leg (DVT). Apparently this is a common effect of SCLC and very dangerous. It took a few days to diagnose, as she had pain before they could see the clots on the ultrasound. Another hospital stay, but she's on blood thinners and was able to drive herself to the last day of chemo on cycle 2.

    As of today, 3 days after cycle 2 completed she is wiped out. I think b/c cycle 1 went so well (besides the feet) her expectations were high and she made family plans this weekend that she couldn't attend. Be prepared for the ups and downs and talking your mom through the disappointment of having to cancel activities if she's too tired. It will be a learning process for everyone. I imagine as each cycle progresses, that we should expect the following week to be a time for rest and recovery.

    I don't know if your dad or another partner is in her life, but keep an eye on them as well. This has been very hard on my dad - although he's handling it well, he struggles. A little back story - my mom had Hodkins when she was 25-26 and in the early 70s it was often fatal. At the right place, at the right time, she was part of a research program at Georgetown University and it saved her life. I think being a survivor is giving her great strength this time around, but seems to be hard on dad to go through again.

    I wish you all the best as you and your family tackle this challenge. I'm happy to have found this board, and to have found someone who is about on the same diagnosis timeline as my mother. Think positively for a smooth and complete remission - that's my focus right now!

    Family issues
    Thanks for sharing your story. It is very similar, that our moms were in the hospital for a lengthy stay, which seemed to weaken my mom so much. Yesterday, she commented that she is just so weak. Because of the oxygen hook up during her hospital stay her physical activity was so minimal that she has no strength right now. But it is improving.
    My Dad is handling this as best he can. He himself was a strong healthy man till he turned 60 and then kidney stone, hernia, 5 by-pass suregery had him going. In '04 brain surgery and in '06 heart valve replacement. This spring another kidney stone. Over the 20 year span, my mom has been there for him and helped him recover. My dad, right now looks better than he did at 70, but I could kick him for his rather distant care and concern. Yesterday I took a day off from cancer, but stopped in to see them after dinner and just the way my dad said "so, did you have fun?" still echoes in my head. My brother, who also lives locally is off to the golfcourse again this morning. I realize that I may be smothering with care and concern, but I just don't want my mom to feel alone with all this. UGH!! It can be so frustrating!!!
    Anyway, I hope your mom is doing well. Please keep me posted on her progress, since she seems to be a little a head of my mom. I'll keep all of you in my prayers, and please take care of yourself. I'm learning a lot about us caregivers and loved ones. We need to keep out wits and strength.
  • mcbriz
    mcbriz Member Posts: 14
    pajami62 said:

    Family issues
    Thanks for sharing your story. It is very similar, that our moms were in the hospital for a lengthy stay, which seemed to weaken my mom so much. Yesterday, she commented that she is just so weak. Because of the oxygen hook up during her hospital stay her physical activity was so minimal that she has no strength right now. But it is improving.
    My Dad is handling this as best he can. He himself was a strong healthy man till he turned 60 and then kidney stone, hernia, 5 by-pass suregery had him going. In '04 brain surgery and in '06 heart valve replacement. This spring another kidney stone. Over the 20 year span, my mom has been there for him and helped him recover. My dad, right now looks better than he did at 70, but I could kick him for his rather distant care and concern. Yesterday I took a day off from cancer, but stopped in to see them after dinner and just the way my dad said "so, did you have fun?" still echoes in my head. My brother, who also lives locally is off to the golfcourse again this morning. I realize that I may be smothering with care and concern, but I just don't want my mom to feel alone with all this. UGH!! It can be so frustrating!!!
    Anyway, I hope your mom is doing well. Please keep me posted on her progress, since she seems to be a little a head of my mom. I'll keep all of you in my prayers, and please take care of yourself. I'm learning a lot about us caregivers and loved ones. We need to keep out wits and strength.

    You're not alone
    Yes, it's a delicate balance between wanting to be there as much as possible and keeping your own life on track. I'm 40, and my husband and I have a 4 year old, and my brother is 38 with 1 year old twins. My mom is 62 and dad is 67. He's in great health - has been very active since retirement, but sometimes overdoes it. He did a 60 mile bike ride on Saturday in the hot humid heat and really paid for it. My mom encourages him to keep doing these things, and he wants to (I think to make things seem "normal") but they both need to realize that he isn't going to be able to train like before, and that it does no one any good if he injures himself.

    Maybe your dad is having a hard time facing what's ahead. Hopefully, the fact that your mom has been there through all his challenges means they have a strong relationship and he will do what he needs to do. Is he pretty savvy as to what's going on? What I mean is, knowledge is empowering and if he doesn't understand the meds, or side effects, and isn't the type to ask, he may be seem distant because he's anxious or scared about the unknown.

    Mom and Dad did come down yesterday for Father's Day which was wonderful. She's still very weak from chemo though. Also, like your mom, being in bed/hospital/not active for a month or more has taken its toll. Remember, chemo is cumulative so each cycle might take a little more out of them. When is your mom's second cycle?

    Have they recommended a physical therapist? Mom had one come to the house to show her some exercises and measure her strength. I think it was an eye-opener to her to see how her leg muscles had atrophied and how much she has to get her strength back up. She's the type who will do what they tell her so I hope this will help.

    Remember, this is a new process to learn for most of us. Each person and family is different, but I know the feeling about wanting to be sure your mom's not alone. I think my mom does so much better when people visit, she gets phone calls and cards, etc. Those things seem to be the best medicine. Also, men can usually compartmentalize things easier than us (or at least me). So it's not that your dad and brother aren't as concerned, but they are able to step away from it mentally to focus on other things, then go back to it. And that's not a bad thing. Because if you're like me, I'm having a hard time focusing on the house, work, friends, etc. because I'm always thinking of her somewhere in my mind. Maybe there are some male caregivers here on the board that can give you a better perspective...

    I have never posted to a blog, support group, etc. before, but I'm so glad to have found this thread. Please keep me posted as to your mom's progress and side effects too. Again, since we're a few weeks ahead of you I'll let you know what's around the corner before you have to go there.

    A side note - is anyone here doing clinical trials?
  • mcbriz
    mcbriz Member Posts: 14
    myjd65 said:

    Small cell lung cancer
    Hi Pajami62,
    Welcome to the discussion board!
    My Dad was diagnosed with non small cell lung cancer in May. He is on 6 cycles of chemo using the same drugs as your mom. He has finished the first 2 cycles. Now he is under going 12 radiation treatments and has finished 7 so far.

    After the second cycle of chemo my Dad lost his hair and has nausea. He did not get mouth sores. His doctors have been great.

    There is so much information out there from the American Cancer Society.

    Lungcancer.org
    is a great site they have a section lung cancer 101.
    Here is the link to their site:

    http://www.lungcancer.org/reading/

    Another website medicine.net has great infromation and the answer to many questions that you may have. Here is their link:

    http://www.medicinenet.com/lung_cancer/article.htm

    The Mayo Clinic also have a great website...here is their link:

    http://www.mayoclinic.com/health/lung-cancer/DS00038

    I just read an article stating exercise is very good (if the person it up to it)for people going through cancer treatment.

    Best of luck to you and I will pray for you, your mom and your family.
    Keep believing and be positive.

    Lots of hugs,
    myjd65

    chemo and radiation - myjd65
    myjd65,

    My mother has also had nausea with the second cycle (carboplatin and etoposide) which she didn't have with the first. She's laughed a bit about the weight loss, but I told her that her "dream weight" 3 months ago, is no longer a goal and she needs to eat. She's actually done well, and I think part of the weight loss has just been eating healthier, but I worry that the nausea will get worse with each cycle and then she won't want to eat.

    Is your father doing radiation and chemo at the same time? I imagine that's very hard. Just curious as to the side effects from both... Mom had a MRI on her brain and it didn't show anything, so that was lucky because she had so much radiation in the early 70s when she had Hodgkins at 25 that they're hesitant to give her any more.

    Thoughts and prayers with your family too, and thank you for the links. I'd seen the last two, but not the first one.

    Nancy
  • pajami62
    pajami62 Member Posts: 11
    mcbriz said:

    You're not alone
    Yes, it's a delicate balance between wanting to be there as much as possible and keeping your own life on track. I'm 40, and my husband and I have a 4 year old, and my brother is 38 with 1 year old twins. My mom is 62 and dad is 67. He's in great health - has been very active since retirement, but sometimes overdoes it. He did a 60 mile bike ride on Saturday in the hot humid heat and really paid for it. My mom encourages him to keep doing these things, and he wants to (I think to make things seem "normal") but they both need to realize that he isn't going to be able to train like before, and that it does no one any good if he injures himself.

    Maybe your dad is having a hard time facing what's ahead. Hopefully, the fact that your mom has been there through all his challenges means they have a strong relationship and he will do what he needs to do. Is he pretty savvy as to what's going on? What I mean is, knowledge is empowering and if he doesn't understand the meds, or side effects, and isn't the type to ask, he may be seem distant because he's anxious or scared about the unknown.

    Mom and Dad did come down yesterday for Father's Day which was wonderful. She's still very weak from chemo though. Also, like your mom, being in bed/hospital/not active for a month or more has taken its toll. Remember, chemo is cumulative so each cycle might take a little more out of them. When is your mom's second cycle?

    Have they recommended a physical therapist? Mom had one come to the house to show her some exercises and measure her strength. I think it was an eye-opener to her to see how her leg muscles had atrophied and how much she has to get her strength back up. She's the type who will do what they tell her so I hope this will help.

    Remember, this is a new process to learn for most of us. Each person and family is different, but I know the feeling about wanting to be sure your mom's not alone. I think my mom does so much better when people visit, she gets phone calls and cards, etc. Those things seem to be the best medicine. Also, men can usually compartmentalize things easier than us (or at least me). So it's not that your dad and brother aren't as concerned, but they are able to step away from it mentally to focus on other things, then go back to it. And that's not a bad thing. Because if you're like me, I'm having a hard time focusing on the house, work, friends, etc. because I'm always thinking of her somewhere in my mind. Maybe there are some male caregivers here on the board that can give you a better perspective...

    I have never posted to a blog, support group, etc. before, but I'm so glad to have found this thread. Please keep me posted as to your mom's progress and side effects too. Again, since we're a few weeks ahead of you I'll let you know what's around the corner before you have to go there.

    A side note - is anyone here doing clinical trials?

    Things are getting better????
    My mom has one more day (today) on her second round of treatment. I talked to her yesterday and she sounded great!

    How's your mom doing?

    Since I was on here, we have had CT of the abdomin, Bone Scan, & Brain MRI. Yes, we, I even was in the room with my mom through the MRI. I now know what goes on in there, and I'm not afraid of the MRI. Mom had a calcium booster injection and that helped a great deal. Last week clumps of her hair were everywhere. She wont' get it cut or shaved, but we did get the wig and a few hats. She has gone out to dinner with some friends and she has started to talk to people on the phone.

    Dad and I have worked out a schedule by talking to each other as to what we would like or need to do. Like yesterday, I got my car tuned up and ran some errands and finally got my hair cut.

    Monday was a grueling day in that my mom needed to have her pro-time checked, then get her port inserted, and then start the 2nd round of chemo. Starting at 8am nothing was on time and when they finally hooked her up to her port she told my dad and I "You don't need to stay here, just come back when I'm done" I was thrilled. She was taking a positive step. When I returned, they felt the need to do an ultra sound of her legs, because she had some new pain there. At 6pm, I looked at the technician and told her "My mom has been here for 10 hours. I need to take her home" Of course they wouldn't let me leave with her, but the doctor finally called and said that there was nothing in the legs, and that she could leave. Thank god, for carry out!

    All reports keep coming back indicating that the cancer hasn't spread to any other location. With each report, I think my mom feels better.

    I like the ONC group that we are with. The staff is great. But the doctors communication skills could improve. When I get a hold of mom's doctor, I'm gonna tell him to stop calling and leaving me a message on a Friday and saying he's not on call and can't be reached over the weekend. Then on Monday, he's too busy with other to take the time to talk! ARRRGGGHHH!!

    I keep waiting for the other shoe to drop, not sure what that will be, but I just want to be prepared.

    Hope your mom is good.
    Take care.
  • mr.steadyed
    mr.steadyed Member Posts: 2
    hello,my mom has small cell
    hello,my mom has small cell in lungs,she went threw chem.well,hair loss about 7th treatment,she starts radiation soon,very worried about preventive radiation to her brain,very bad side i am told,anyone have any good things to say about preventive brain radiation?please and thanx
  • mcbriz
    mcbriz Member Posts: 14
    pajami62 said:

    Things are getting better????
    My mom has one more day (today) on her second round of treatment. I talked to her yesterday and she sounded great!

    How's your mom doing?

    Since I was on here, we have had CT of the abdomin, Bone Scan, & Brain MRI. Yes, we, I even was in the room with my mom through the MRI. I now know what goes on in there, and I'm not afraid of the MRI. Mom had a calcium booster injection and that helped a great deal. Last week clumps of her hair were everywhere. She wont' get it cut or shaved, but we did get the wig and a few hats. She has gone out to dinner with some friends and she has started to talk to people on the phone.

    Dad and I have worked out a schedule by talking to each other as to what we would like or need to do. Like yesterday, I got my car tuned up and ran some errands and finally got my hair cut.

    Monday was a grueling day in that my mom needed to have her pro-time checked, then get her port inserted, and then start the 2nd round of chemo. Starting at 8am nothing was on time and when they finally hooked her up to her port she told my dad and I "You don't need to stay here, just come back when I'm done" I was thrilled. She was taking a positive step. When I returned, they felt the need to do an ultra sound of her legs, because she had some new pain there. At 6pm, I looked at the technician and told her "My mom has been here for 10 hours. I need to take her home" Of course they wouldn't let me leave with her, but the doctor finally called and said that there was nothing in the legs, and that she could leave. Thank god, for carry out!

    All reports keep coming back indicating that the cancer hasn't spread to any other location. With each report, I think my mom feels better.

    I like the ONC group that we are with. The staff is great. But the doctors communication skills could improve. When I get a hold of mom's doctor, I'm gonna tell him to stop calling and leaving me a message on a Friday and saying he's not on call and can't be reached over the weekend. Then on Monday, he's too busy with other to take the time to talk! ARRRGGGHHH!!

    I keep waiting for the other shoe to drop, not sure what that will be, but I just want to be prepared.

    Hope your mom is good.
    Take care.

    thanks for checking
    So far so good. My mom is exactly one cycle in front of yours. She had day 2 of cycle 3 today. It's weird that they scheduled her for Thurs., Fri, Mon. ??? The doc said it was okay, but then the nurses at the chemo "lounge" (as we call it) said it was unusual.

    Look out for after cycle 2 because it hit my mom hard with fatigue. I'd say about 2 days after chemo ended and it lasted about 7 days. We were all taken aback, as she didn't have extreme fatigue after cycle 1, and like your mom we wrote off some of the tiredness to her extended hospital stay, being on oxygen, etc. BTW, she only stayed on the oxygen for about a week when she first got home, so that was good. She's had to have one more fluid drain of her left pleural cavity, but now her chest sounds almost clear.

    Mom's hair started dropping after cycle 2, and although she got a wig she's finding that hats and scarves are more comfortable. All of the hair hasn't come out yet, and she did get a buzz cut when it first started - I think she looks kind of cute with it! That's great that your mom's spirits are up too - I think when they get to chemo and see all the other people there they realize that they're not alone. Mom has had someone with her each time but the last day of cycle 2 she wanted to drive herself. Going to dinner, seeing friends, phone calls, etc. really are the best medicine. Mom always seems so much more animated and up after some social time - especially if they can discuss things besides cancer.

    On the legs - definitely have her legs checked if there is ANY pain. My mom started with leg pain, got an ultrasound and they found nothing. It got progressively worse so that in 2 days it was agonizing and she couldn't walk (I think this was after cycle 1). Turns out she did have DVT and when they did the first scan the clots just weren't formed enough for the ultrasound to catch it. Now she's on Coemedon, but it was a painful process. DVT is not unusual for small cell patients, so encourage another scan if the pain continues.

    Glad your mom's scans were clear too. Mom's initial scans also showed no spread, but they're going to do an MRI on Tuesday b/c she's having some vision issues. Her CT scan to see the progress being made is 7/22. Very anxious for that! When I think about it, then I get that "other shoe" feeling you mentioned!

    Is you mom receiving neurolastin shots the day after each cycle? Mom started after cycle 2 - they put the bone marrow into overdrive producing white blood cells and her WBC count have been good b/c of it. It does make her bones ache for a few days though. AND they are $5400 a piece - yup! Mom's met her deductible so it's covered, but good grief!! However the doc said it really helps keep patients on their chemo sched by not letting the WBC count drop too low and decreases the chances for hospitalization b/c of same. What is the calcium booster injection?

    i think that's about all the heads-up I have for you. The doc said that by the end of treatment she should be feeling very good, so we look forward to that. I've found that most days are getting into a routine, but sometimes it hits me HARD and I just cry and cry. We did have a great weekend over the fourth going to the beach with extended family. It was great for her and for all of us. Since it was right before a new cycle her energy was back up and she was able to enjoy it.

    On the Onc Group note - I too was a little put off by our visit yesterday, just some bed-side manner stuff, etc. But overall we're pleased too with the treatment, staff, etc. It takes very special people to work oncology!

    Sorry if I repeated any info from previous posts. Please let me know how your mom does in the next week or so after cycle 2 is over. And again, be very vigilant about leg pain - DVT can be very painful for them, and dangerous of course if not treated.

    I'm headed to Mom's tomorrow - she's hell-bent on cleaning out and purging. Of course, my brother and I have thought this was a good idea for awhile, but now the timing seems weird. But, she really wants to do it and so that's what we shall do!

    Take care of yourself too!
  • mcbriz
    mcbriz Member Posts: 14

    hello,my mom has small cell
    hello,my mom has small cell in lungs,she went threw chem.well,hair loss about 7th treatment,she starts radiation soon,very worried about preventive radiation to her brain,very bad side i am told,anyone have any good things to say about preventive brain radiation?please and thanx

    PCI & WBR
    First, best wishes to your mom as she begins the next step in treatment. I have read that Whole Brain Radiation (WBR) can have some very undesirable side effects, and PCI (Prophelactic Cranial Irradiation I think) has mixed reviews. Have you been on the OncTalk or GRACE forums? They seem to have several good threads with people's experiences with PCI and WBR.

    Keep us posted!
  • mcbriz
    mcbriz Member Posts: 14
    "spectacular" scan results
    Just an update - my mother had her CT scan between cycle 3 & 4 and it shows all the tumors (left lung and lymph nodes) are "immeasurable or not visible." YES! She started cycle 4 today with this good news.

    The onc doc said for most patients he'd say let's do cycle 4, then move to radiation, but this is not an option with her as she had intense radiation in the 1970s for Hodgkins. So, with her support, he's having her do all 6 cycles since this is the one chance to hit it hard. As we know, when it comes back, you have less of a chance to fight it.

    Anyway, there's more complex discussion ahead he explained re: PCI, but we left with this good news today and are happy.

    Best wishes to everyone out there, on this board, and in our hearts, as the you continue this fight. Pajama62, I hope your mother is having similar progress.
  • upnorthtex
    upnorthtex Member Posts: 4

    hello,my mom has small cell
    hello,my mom has small cell in lungs,she went threw chem.well,hair loss about 7th treatment,she starts radiation soon,very worried about preventive radiation to her brain,very bad side i am told,anyone have any good things to say about preventive brain radiation?please and thanx

    PCI
    My wife was diagnosed with SCLC June 06, underwent chemo(3 cycles) and concurrent radiation ,twice a day for 15 days, after clean PET scans she had PCI, with next to no side effects and nothing disabeling. She is still clean after 3 years and has no problems other than some mild memory loss(not unusual at 70). We square dance 2 or 3 times a week, and travel in an RV several times a year to dances. Dancing requires some stamina and a good memory and Vicki has no problems with either. I personnaly would recommend PCI if offered, the alternative is far worse than any side effects. By the way the hair is back and tho it was a very nice Grey before it is now as dark as it was in high school. Best of luck to You all. Art
  • lightfoot
    lightfoot Member Posts: 1

    PCI
    My wife was diagnosed with SCLC June 06, underwent chemo(3 cycles) and concurrent radiation ,twice a day for 15 days, after clean PET scans she had PCI, with next to no side effects and nothing disabeling. She is still clean after 3 years and has no problems other than some mild memory loss(not unusual at 70). We square dance 2 or 3 times a week, and travel in an RV several times a year to dances. Dancing requires some stamina and a good memory and Vicki has no problems with either. I personnaly would recommend PCI if offered, the alternative is far worse than any side effects. By the way the hair is back and tho it was a very nice Grey before it is now as dark as it was in high school. Best of luck to You all. Art

    PCI
    What is PCI?
  • stayingcalm
    stayingcalm Member Posts: 650
    lightfoot said:

    PCI
    What is PCI?

    PCI
    Prophylactic cranial irradiation - radiation to the brain to forestall the development of metastases.