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Small cell lung cancer

pajami62
Posts: 11
Joined: Jun 2009

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.

myjd65
Posts: 7
Joined: Jun 2009

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

pajami62
Posts: 11
Joined: Jun 2009

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

mcbriz
Posts: 14
Joined: Jun 2009

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

maximercado's picture
maximercado
Posts: 1
Joined: Mar 2014

My mom was just diagnosed with stage 3B/4 Non-Small Lung cancer and she just started chemo they want her to do chemo for 6 weeks and have radiation every weekday for 3-4 weeks for 1 minute each, does it sound like alot? I feel lost please help

dennycee
Posts: 644
Joined: Mar 2011

No, that's not a lot.   It's just about what I had 3 yrs ago. Will she be having them at the same time or chemo to shrink it and radiation to kill it after?  

Linmol1
Posts: 4
Joined: Jun 2014

How is your mom doing?

trft
Posts: 49
Joined: Jan 2006

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

pajami62
Posts: 11
Joined: Jun 2009

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

Linmol1
Posts: 4
Joined: Jun 2014

My younger sister was just diagnosed with non-small cell adenocarcinoma stage 3A, she will start chemo and radiation this week on Thursday, she is 58 years old, she is scared, she is gonna have Caboplatin and Taxol, she will have 1 time per week for 6 weeks chemo, and 32 sessions radiation 5 days a week.  Any positive feedback would be wonderful and will stay in on touch here.  Thanks

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

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

pajami62
Posts: 11
Joined: Jun 2009

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

hansie
Posts: 37
Joined: Jul 2008

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
Posts: 11
Joined: Jun 2009

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
Posts: 14
Joined: Jun 2009

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
Posts: 11
Joined: Jun 2009

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
Posts: 14
Joined: Jun 2009

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?

pajami62
Posts: 11
Joined: Jun 2009

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.

mcbriz
Posts: 14
Joined: Jun 2009

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!

mr.steadyed
Posts: 2
Joined: Jul 2009

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
Posts: 14
Joined: Jun 2009

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!

upnorthtex
Posts: 4
Joined: Aug 2009

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
Posts: 1
Joined: Aug 2009

What is PCI?

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

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

Sunshine 66
Posts: 9
Joined: Dec 2009

Happy Holidays ,Everone !
Tomorrow is Christmas Eve and I hope that the spirit of Christ is with all of you !
I have Limited Sclc & I have had chemo treatments & Radiation to my chest & now I am trying to decide wheather to do the PCI to the brain just as a preventative measure. I am gong to have a MRI on Dec. 29, 2009 to see if I am still clear of any cancer to my brain. My Doctor told me that if I decide to do the radiation that I will lose my hair again ! ( I just got my hair grown out to about an inch now since I had Chemo ! ) He said that I could have permnant hair loss in spots after the PCI . I would like to know if anyone else has had an experience that when their hair grew back in ?
I am prraying for a miracle this Christmas for us all ! God bless you !!Merry Christmas !

nipcat's picture
nipcat
Posts: 7
Joined: Jun 2009

hi I also have limited Sclc I had chemo and radiation at the same time I also had brain radiation for precaution in may till September my pet scan in September showed no sign of cancer tomorrow I get a another pet scan
i wish you good luck

nipcat's picture
nipcat
Posts: 7
Joined: Jun 2009

hi I also have limited Sclc I had chemo and radiation at the same time I also had brain radiation for precaution in may till September my pet scan in September showed no sign of cancer tomorrow I get a another pet scan
i wish you good luck

medi_2's picture
medi_2
Posts: 506
Joined: Aug 2009

Hi! I finished the preventative radiation about a month ago and I'm fine. I was worried at first because it was my brain they were messing with and I'm a little protective of my brain ;).
Like a dummy, I had read countless horror stories; but don't worry I won't relate them...
I had a 10 day treatment (with a weekend break) and the third week my hair fell out. That was the biggest deal, because it usually doesn't start coming back intil a few months down the road. Kind of sucks since I live in Florida and I'm an outdoorsy person. But that really was my only problem. Also, they make a mesh mask for you to wear during treatments and when I was done I took mine home and am making a piece of artwork out of it (I am an artist and cancer has relly turned me into a new direction in art but thats another story),,,
I have not noticed any real loss of memory. I've always been a little ditsy so it's a little hard to tell! haha. The way my Radiation Oncologist explained it to me: if you tke 3 seconds to remember something, you may require 5 seconds from now on. And its definately worth the trade-off...
Let me know how she does! Good Luck! And hello everyone, I am Medi and I just joined, You can read my story on my page. I plan on posting some 'cancer' related art soon. It's amazing how cancer affects creativity in different ways.
Ciao!
Medi

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

I kept my mask, it's staring at me in its alien way right now :) I had always thought I would paint and feather it and hang it on the wall as some sort of totem, but the idea grew less and less appealing as time went on, so now it's just collecting dust on my writing desk... Eventually I'll make up my mind to throw it away but for now it still feels like I have too much invested in it.

Since the radiation (finished beginning of February), I have noticed a drop in my ability to remember things - most notably, where I put things like my keys and glasses. I also see I get distracted easily, usually when I'm on the internet looking for something specific - I start reading Slashdot, or somebody's blog or book review, and totally forget why I'm there :) This has increased gradually over time. I can only hope it will stop and reverse itself before I forget my kid's names!

I'm hoping, also, that your experience will be better!

Michaela74's picture
Michaela74
Posts: 22
Joined: Aug 2009

I am new to this site. I have read so much on here. Trying to find any information that may help my mom. she is stage stage 3 non-small lung ca. Is this PCI treatment something that would be beneficial to all lung ca patients. Just wondering if the oncologist in Germany would consider this for my mom. She is doing chemotherapy right now but for future reference? I am so thankful for this site and those that have responded, I am just so scared for my mom- my angel.

Sonja

Linmol1
Posts: 4
Joined: Jun 2014

I am curious how this came out, is your mom doing okay or what, I realize this is from 2009

mcbriz
Posts: 14
Joined: Jun 2009

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.

pajami62
Posts: 11
Joined: Jun 2009

On Monday (8/17) my mom had results of CAT scan that was done after three rounds of chemo. The tumors have decreased in size. Her blood levels and platelets are good. When the doctor said "I'm pleased with the results, how do you feel?" My mom replied "lousy". At this point she has seemed to reach a level of depression. The doctor suggested a psychologist, drugs or both. My mom opted for the drug. She's not big on talking to people about her business. Unfortunately this week I have to return to work, (I'm a teacher, summers off) and I think that my being around less, the news that she will need more chemo and her approaching 8oth birthday are just hitting her hard. Me too! She is sleeping sooooo much, and is becoming lethargic. I reread some of these entries and I am going to look into some Physical Therapy. Her appetite is poor as well. Last night, I went a little bizerk when my brother suggested that we start looking for nursing homes. UGH! I'm beggining to think about calling the psychologist for me and taking the pills. This is a lot harder than I thought. I just want to see me mom up and moving, just a little each day.

mcbriz
Posts: 14
Joined: Jun 2009

First, that's wonderful news about your mom's scan. After mom's scan (done after 4th cycle), we thought the great results (no visible tumors) would be really uplifting, but I noticed it took her a few days to embrace the good news. Maybe it gets hard to have everyone saying "wonderful" "great news" "aren't you happy?!" when really you know this is a temporary reprieve in the long-term. But she does manage a very positive attitude most of the time.

Although my mom has had some sort of blow after each chemo (DVT, severe anemia needing transfusions, etc.) I also think there is some depression after each cycle. Maybe it's the pain, or side effect that brings her down, I don't know. But it's a cycle - feel bad physically... get down mentally, etc. Then she doesn't get out of bed, which makes her legs weaker, then she gets frustrated b/c she can't get around as well, ...and so on.

Sunday was Mom's 63rd birthday and the family met for brunch. She was feeling good, and was so happy to have everyone together. She got tired and I helped her into the car as we all stood outside to say goodbye. It broke my heart to look back and see her crying as she watched Dad hug us and the grandchildren. She had that "I'm wearing sunglasses and waving, so maybe they won't see me cry" look.

Attitude is SO important, and maybe that's more difficult at 80. But obviously you've seen a change in her, and she hasn't always been like this. And if you've noticed a change in yourself, don't be afraid to talk to your doctor. You need to stay strong too.

The doc assured Mom that towards the end of chemo she would begin to feel so much better that she'd wonder why she was doing it. Can't say that yet, but that's what I pray for - for her, and for your mom too.

Please keep me posted. I have a poster I gave my mom, and I have it myself, that says "KEEP CALM and CARRY ON." Take a deep breath now....

andygirl64
Posts: 9
Joined: Oct 2009

Hi
I will keep your mom and your family in my prayers , please let me know how things go for you . my mom is starting chemo on Monday, I do not know what type yet . I will let you know if I find anything out that might be helpful to you ..

Laura88
Posts: 47
Joined: Oct 2009

Hi -- I just finished 6 cycles (every three weeks) of alimta and cisplatin (not sure of spelling). I did pretty well as far as side effects. Very tired the week after, mouth sores and towards the end neuropathy in hands and feet. My side effects lasted about a week, and as time went on it was harder to get back to things, more tired, and I'd say close to two weeks. (Although I did undergo radiation at the same time). However, I never lost my hair. It has been three weeks since my last treatment and I have noticed it is still thinning -- but it's there and not thin enough to shave. Actually, if anyone knows how long it is after chemo ends that your hair is safe from falling out I'd like to hear.

Best wishes to you. Your mom is lucky to have you. I did so well, I believe, because I had so much support from family and friends. You have no idea how much it means.

Hauslohn
Posts: 2
Joined: Nov 2009

My husband is also undergoing Chemo with Cisplatin and Alimpta - he is midway between his 3rd and 4th dose ( every 3 wks like you) and he is almost at the end of 6 weeks of radiation. If I read you correctly the side effects last longer as the Chemo goes on - and for him too, after the 3rd dose the negative effects lasted longer than after the 2nd dose.... will it get worse progressively until he finishes the 6 rounds of Chemo? Do the toxic effects accumulate ... is anything recommended to help with that.?
Thanks

purpleeins
Posts: 2
Joined: Nov 2009

I am a seven year non-small cell lung cancer survivor(was 46 yrs old when diagnosed)following a diagnosis of stage 4, 2 wks to live! One important item I have learned is that everyone is different. Some patients experience similar symptoms like being tired, sick, losing hair, eyelashes (no less as if drawing eyebrows isn't bad enough!)Must try in the midst of all this illness to find humor (difficult at this point I know)but if I can help with any questions, most willing to share my experiences-been the route cat-scans, MRI's, Pet scans, radiation, chemo, surgery (they removed the left lung & plural lining)done chemo therapy infusion. very fortunate to be here-lots of faith in the man upstairs and my doctors...best of luck, if I can help please contact me. Bless you all, if I had to do it all over again, I'd be first in line!!! Purpleeins...

Laura88
Posts: 47
Joined: Oct 2009

Purpleeins -- you were Stage 4 seven years ago? I am stage 3B and not a surgical candidate. Now that I'm through with chemo/radiation and surgery is not an option I'm not sure what happens to me!! I have my first scan 11/12 and I'm very scared. I guess there's always more chemo, right? But I know no more radiation for me. I certainly do pray like I never thought possible, but this is the epitome of being frightened. It helps so much to hear someone say they are a 7 year survivor!! It helps to hear it's possible. Thanks so much.

starrynight
Posts: 3
Joined: Jul 2009

mom got the word back in may. things looked up for awhile then went down hill real fast.right now she got sent home from a treatment center the end of last month. we were told they could not do anything more for her.they told us she had 2 to 4 weeks to live the way she was going. she is on the tpn bag and pain meds that is all. after many problems at the center of things going wrong. not getting what she needed and stuff at the time. we are left with the feeling if she had just stayed here for treatment things might be diffrent. they had to take out her port and put in a picc line. she got staph in the port. they told us the picc line would only last for 2 weeks and then need to come out.so here we are now with all that has taken place over the last 5 months for the out come to be what they told her to begin with. which was 2 months with nothing and with chemo and radiation 6 to 11 months. she wont sleep at all or eat anything. hospice will not take her because of the tpn bag. and home health really don't have what she needs right now. she is still fighting and will not give up but her body is failing. just don't know where to turn for help?

starrynight
Posts: 3
Joined: Jul 2009

mom is in the hospital. she pulled her picc line out tuesday morning. so they have called in hospice to take over her care. with the way everything is going she should pass sometime around thanksgiving. my dad is lost and really doesn't know what to do. mom has been his rock all these years.

mcbriz
Posts: 14
Joined: Jun 2009

Starrynight - So sorry to hear about the progression of your mom's illness. My mother was also diagnosed in May, and my thoughts are with you as I read your update. Please let us know how she (and you) are doing.

CCAOG
Posts: 31
Joined: Dec 2009

I was diagnosed in January with extensive sclc in my right lung, it had attached to my heart sac. I went thru radiation, which was really a breeze, nothing more than a sunburn. The chemo on the other hand was a little different, but not terrible. I got carboplatin and taxol. They gave me so much benedril before the chemo treatment, I slept thru most of it. All the needles and I.V's tore my arms up. It seems that for every chemo treatment they took blood twice. I was getting once a week treatments at that time (during radiation). I got nausea just a few times, took a pill, and it was gone in about 20 minutes. The biggest problem I had was the generally awful feeling and drowsiness. When my radiation was over I went on vacation to the Keys and went fishing with my family. We caught a lot of Mahi Mahi by the way. I'm still eating it. When I got back I got 6 double size treatments 3 weeks apart. After the 3rd one I couldn't stay awake. I was sleeping 16 to 18 hours a day. It took about three weeks after the treatments to start to feel normal again. My last chemo was in August. I had my next scan on my birthday in September, I'm 52 now, and I was in remission. HIP HIP HOORAY. I have however started getting fluid in that lung and had it drained out. They did a lab on it and found cancer cells in it, so I'm looking at more chemo and maybe another procedure to drain the lung completly and "glue the outer lining to the chest wall so that the fluid won't have any place to build up. It's all done with needles though. It won't be to bad I hope,I am a little worryed about the chemo though. Tell your mom that with a good support team and a good attitude (which is the biggest thing) she can get thru this. Good luck and GOD Bless.

Sunshine 66
Posts: 9
Joined: Dec 2009

HI, lAURA88 !
My hair started falling out about a week and a half after I started Chemo . My hair was past my butt . I hadn't had it cut in over 20 years ! My daughter would trim an inch or two every six month or once a year .That was because I had a hard time getting her to take tme out of her busy life to trim it ! I brushed my hair into a braid & went to the beauty salon & had the stylist cut my hair just a little above my shoulders. I told her that I wanted my hair cut in a bob hairstyle & I ended up looking like 'Rosanna Danna Banna '! ha ha!
(If you remember on Saturday nite live !) It looked more like a Wedge cut ! That is the reason I never liked going to a beauty salon because they never listen to what I say that I want, They just decide to give you what they want . Anyway I ended up leaving with my braid that was a little over 19 inches long ! I plan on donating it later on !I just wanted to hold onto it for awhile because it was such a shock to have to cut it! A week after I had it cut it started getting matted and when I tried to brush my hair it just stated coming out to the point that I just had some fine hair all over my head. I combed ny hair altogethet & made a little ponytail in the middle of the back of my head,. My boyfriend finally talked me into having someone shave it all off with an electric shaver because when I would wear a wig sometimes some of my hair might hang down from under the wig. To answer your question , I didnt have any more hair fall out after the first chemo treatment. & I had 4 or 5 more chemo treatments after that ! The last one I had was the first week of Audust 2009 & this is December 24, 2009 & my hair has grown back in evenly about one inch ! Iam glad that I went ahead & had it shaved all over one length ! Good luck to you ! & Merry Christmas !!

DMP
Posts: 50
Joined: Dec 2009

Thanks for the advice, Sunshine! When the time comes, I will just sharpen the blade and cut it all off! I have my "do-rags" stashed yet from the summer motorcycle riding days this past summer - they ought to come in handy!

Patpat
Posts: 1
Joined: Dec 2009

My father has diagnosed the SCLC as well...he is 75 years old...his breath is weak and not advisable for chemo right now. Only can do is radiotheraphy on the tumor on the chest...but he feel tired....is this natural if he tired ? any side effect for radio? can anyone tell me? I am very worry on him now.....

Sunshine 66
Posts: 9
Joined: Dec 2009

Hi, Patpat !
I had radiation on my chest for 30 days & I was told that it would make me feel tired & to just lay down & rest ! The radiation did make me feel tired & I just rested & tried to rejuvinate myself ! Dont worry about your dad feeling tired ,he is 20 years older than me
so he already has an excuse ! I hope this helps answer your question. I hope your dad gets feeling better ! This is New Years Eve ! I hope we all have a New Year filled with Hope & Miracles ! Happy New Year !!!

Rhonda13
Posts: 3
Joined: Apr 2010

My husband was diagnosed with sclc March 3, 2010. He has just finished his 2 course of chemo, his treatments are 3 days of chemo and 21 off. He has done exceptionally well, feels better, chemo shrinks tumors. His cancer has metasized to the liver and lymph nodes. My husband is a fighter. We have been on a emotional roller coaster since diagnosis. Only god knows the outcome of everyones cancer, pray, enjoy each day with your mother. I will pray for you and your mother.

malibujones
Posts: 1
Joined: Dec 2013

My boyfriends dad just got diagnosed with small cell lung cancer and I am looking for some  survivor stories for them. If you have any please let me know, it does make them feel better when they hear of people that survived because it gives them hope, and that is all they have right now.

dennycee
Posts: 644
Joined: Mar 2011

....was diagnosed with sclc 4 years ago.  He had prophylactic crani(PCI)  He drives, pilots his boat and fixes things around the house all the time.  

You may want to start this as a new thread as it will be easier to find you.  Also visit inspire.com.

 

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