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New here, and new to SCLC


concerned daughter in FL

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Hi. My name is Bet and while I'm not new to message boards, I've been blessed not to have a need for one on so serious of a topic. That is, until about a month ago, when our family was hit by a CAT V hurricane by the name of Cancer. (This is in addition to a flurry of other hurricanes we have dealt with in the space of 6 weeks).

At the beginning of September, my mom and dad left for a 3 week trip to Germany. They are in their early 70's and have been blessed with extremely good health, especially my mom. She celebrated her 70th birthday in July but has the physical and emotional spirit of someone far, far younger.

While she was in Germany, she started to feel a pain in her upper back, and then a pressure on her chest....she said it felt like an elephant sitting on her chest. It got bad enough that when they arrived in their last stop, Berlin, my dad insisted that they find a doctor. They were referred to an excellent private clinic, where they did blood work and a chest xray. A follow-up CT scan was immediately ordered. Both showed a very large mass on her left lung and they were advised to return home immediately. While they made their way back to the states, I set up an appointment at Moffitt Cancer Center, and the morning of the appointment (Monday Aug. 20th) , I drove the xrays, CT scans and the accompanying written reports out to the hospital and left them with the doctor. When he met with my mother that afternoon, he informed her that he would need to do further tests, but was 99% sure she had SCLC. Over the next 3 days she had a MRI of the brain, a PET scan and a lung biopsy. On Friday, we received the devestating news that the lung tumor is inoperable and that the cancer has spread to her liver and 6 places in her brain.

The timeline the doctor gave my mother was incredibly frightening - 6 weeks with no treatment, 6 months with treatment. But when he stressed that those are just averages, my mother accurately replied that she has never in her life been "average" but always WAY ABOVE average, and that furthermore, she's an extremely competitive person, and wanted to know what the record was, so that she could work at beating it. :) :) :) If you knew my mom, you'd see the humor and absolute truth in that statement, not just the arrogant way it might sound.

She began chemo that very day, and had an initial treatment of three consecutive days. She has had ZERO negative side effects from the chemo, but says she can feel that the tumor in her chest has shrunk, because the pressure and pain has almost disappeared. She does not feel sick at all and if you saw her, and didn't know about the diagnosis you would never know she has this horrible disease.

She starts another 3-day round of chemo next Monday, and then I think they said they'll repeat some of the scans.

She is also taking steroids twice a day, and that has been my only concern wtih the treatment so far. She doesn't sleep much at all and there's a manic quality to her conversations and her actions....it has exacerbated one of her defining personality traits....she's an extremely organized person and her need to have everything organized has blossomed into an overwhelming compulsion. I'm concerned that the dose of steroids she's on is too much, given that she can only sleep for short periods of time, is very restless and very "manic".

Has anyone had any experience with something similar? Is it anything to be concerned about?

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I love your mom already. She has the right attitude and seems to be doing well on her chemo. I would like to know which chemo combo she is taking. I hate to have to welcome you to this kind of board but I am so glad you found us. This is a great big family with lots of love, support and information. It would be helpful to us if you would fill out your profile on your mother...it will post to the bottom of your posts and help us know where you are in treatments etc. Again, welcome.

Nina

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Hi Bet:

Sorry to hear about your mother, but you have found a great group of people here, stay with them, they have been my lifeline through the ordeal that is happening with my mother.

A little history on my Mom, she has SCLC in her left lung with some lymph node involvement, she is starting her second round of chemo tomorrow, (by the grace of God, I am sure she will do well). However, her first round was extremely trying as she got very sick previous to it, which brings me to your question about mania and restlessness.

My mother was behaving much the same way previous to beginning treatment and we found out that her electrolytes were down quite low, maybe have hers checked just to be on the safe side.

Just a thought, keep us posted and God bless,

Deb

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Hi Bet..

I am afraid that I have had way too much experience with steroids...I have been on high doses for asthma, for arthritis, and with chemo. I can tell you that I became very compulsive...I wanted to organize drawers, paint walls, wash ceilings and ceiling lights; restless and could not sleep. I am pretty sure that if you check with the doctor that the doctor will say this is a side effect of the prednisone.

Also, my mind worked a hundred miles a minute and unfortunately, so did my mouth. Also became very tearful at times for no reason other than the prednisone.

I always say I have a love/ hate relationship with it. They have pulled me out of so many events where no other medicatioon will, but the side effects are hateful. I think if I remember right, that I would ask for a sleepy time medicine so that I could at least get a little sleep.

Sometimes it is the only thing that will work in some situations...this may be one of those situations. I wouldn't be surprised if the doctor doesn't take your mom off them.

Best wishes to you and your Mom...She is a force to be reckoned with...good for her.

Cindi o'h

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When my husband takes decadron, a steroid, it is like he is on speed - that manic quality, talking fast, mowing grass, sleeplessness. He was taking a lot when he first started chemo but as time went by, and the chemo was milder, the amount got cut down. So - I think it may be a normal reaction to steroids and will pass when she no longer needs to take them.

Just a couple of heads up - if she takes them daily, she may need weaned off gradually. Ours weren't daily, just around the time of the treatments. Also - my husband developed a cataract and the eye doctor said it could have been because of the steroids. All in all, I think the steroids had more benefits than drawbacks.

You write so articulately, excellence must run in the family. Welcome to the group. I urge you to stop in frequently, there is a lot of information and comfort here.

Margaret

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Hi Bet~~

Your mom sounds like a real pistol....and that will serve her well in her battle with cancer! :) A positive attitude and that competitive spirit may also assure that she doesn't suffer too many ill effects from treatment!

It seems like a lot of people really struggle with the effects from the steroids though. I am on a low daily dose of prednisone for another disorder....and am lucky that it doesn't really affect me adversely (except for increased appetite! :roll: ) But when I received the IV steroids with my chemo, I did NOT take my 6 mg. daily dose. And I too had trouble sleeping on chemo nights as the IV dose was higher.....between 10 - 20 mgs.

You might ask your mom's onc about Ativan or even if she can just take a Tylenol PM or two to help her sleep. It's really important to get plenty of rest...and those long sleepless nights start to take a toll...so I'd see about some sort of sleep aid before it gets out of hand. I still will occasionally take a Tylenol PM to help me sleep if I feel I need a really good night of it. They knock me out pretty good...and my onc said that taking the Tylenol was preferable to Ativan or Ambien, both of which are prescription.

Your mom has the right attitude going for herself and you should all remember that the stats you'll see on survival of l.c. are just that....stats. They do NOT take into account any one individual's spirit or particulars.....and there are plenty of people here who have beaten the odds already and are years out from diagnosis.

I'm so glad your mom's pain is already diminishing. Tell her to keep thinking positively about how well the treatment is working and to enjoy each day! To he## with the averages!!! Keep us posted on how things go...but I have a feeling they will continue to go well for Mom!

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Well, your mom definitely has the right attitude!! I can't offer any first hand advice re: steroids; I only took them on chemo days and had no adverse effects from them.

I'm glad her pain has diminished, mine did too after my 1st chemo tx.

Hope to hear more from you; keep us posted.

Mary

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Wow, she sounds like an older female version of my husband.

That is his opinion - he asked the oncologist at the beginning how long any patient he's had has lived with SCLC and he said he's got a couple up to 20 years now, so Dave said, OK, I can do that.

And yes, the steroids did all that to Dave, too. Some of his behavior was very comical but alot of it was downright scary. Thank goodness he doesn't need them now . . . but they are a necessary evil when you need them.

Hopefully he'll get on here and add his $.02 worth, but he's feeling pretty bad right now, he had his "bad" chemo yesterday.

God Bless,

Karen C.

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Thank you all for the wonderful welcome and all the heartfelt replies! I can certainly see already what a warm and caring group of people there is on this message board and it's a comfort to me.

I usually do my posting at night, due to time constraints, but I wanted to pop in and thank you for making me feel welcome, and I will post the particulars of my mom's meds, etc, later tonight.

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I would also like to welcome you to the group. Your mom has exactly the right attitude for someone dealing with this disease. I hope with all my heart that she responds completely to treatment and continues to live her long and happy life.

I think attitude does go a long way with this--when someone talks about stage IV, I think about Lance Armstrong--he didn't believe the grim news they gave him either and he fought to make it go away. I guess he did. May your mother achieve the same results....

Cindy

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Hi Bet,

I'm terribly sorry about your Mom's diagnosis. I am, however, glad that you found your way to the message board where many caring people can provide you with the moral support you need.

Your Mom sounds great! She has a terrific attitude - armed with that, you have every reason to believe that she will beat the statistics!!! SCLC is quite responsive to firstline treatment and I'm glad to hear that your Mom's responding well and experiencing some relief from her symptoms.

Keep the faith!

Kel

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So sorry about the diagnosis.

Tell her I am almost at 4 yrs. out! Actully I am 3 yrs and 8 months since diagnosis. I have had 1 relapse during that period and at this time have been chemo free since Aug of last yr. Mine was extensive also(see bio below)

Tell her there are a few others I have heard that have gone as long as 6 yrs!! I plan on beating that record too. :lol:

The steroids will freak a person out!, see if she can get some xanax for nerves and maybe ambien as a sleeping pill. They really helped me when I was on steroids.

Good luck-pm me if I can help

Cindy

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Welcome Bet. Your Mom sounds as if she is such a wonderful character.

My husband was on steroids for a little while before brain radiation, and he did show signs of restlessness. He did not however get a sudden urge to clean up his clutter, mores the pity :lol:

I wish you, your mom and family all the very best and prayers and positive thoughts are coming your way.

Paddy

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Okay, we'll see if I was able to add my mother's info to the profile succesfully....not sure if I used all the right "terminology" but I am trying to learn quickly. :)

The steroid my mother is on is Decadron. She takes it twice a day. And in spite of the fact that she is meticulously carrying out the doctor's orders, on this one thing, I don't think she wants to report to him that she is having trouble sleeping or is "manic". You see, she likes it. Which under the circumstances, I guess I can understand.

She does have a prescription for a sleeping aid (can't remember now, but I think it's ambien) but I don't think she is taking it. She really doesn't want to sleep.

But it does have me a little concerned. Margaret, thanks for mention that about stopping it gradually. I'm going to mention it to my dad....he is going to the appointment on Friday with the oncologist and he wll make sure the doctor is aware, even if my mom doesn't mention it.

I'm so interested in reading everyone's story. It's giving me comfort and hope, that we have many happy times ahead of us.

Paddy, I'm headed out your way (your signature says you're in L.A.?) on Thursday. My middle child is a freshman in college (USC) and it is finally Parent's Weekend. He is the apple of my mother's eye (well, one of six "apples").

I am feeling such conflicting emotions about the trip. I'm SO excited to see my son again, especially because I know he has been distraught about his grandmother's dignosis and being so far away from home. But the trip will also be bittersweet...we had been planning to take my mother and father with us, and do some other special things in the area besides the USC stuff.

But I am taking a video camera and will be filming everything...Kyle's dorm, introducing his friends, the frat house, the football game, etc. I'm hoping to make something special to give my mom a feeling for what Kyle is experiencing.

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A couple of other things, I forgot that I wanted to mention....

My mom told me today that she wants to make her doctor famous. She's really serious about breaking the record! Her determination is awesome!

Also, I was wondering if anyone can recommend any good books for talking with children about cancer. My youngest child (10 year old girl) is having a very hard time dealing with her grandmother's illness. She's a super sensitive, emotional type and she's always been very, very close to my mom.

I was not prepared for the depth of her reaction, and at times I've really been at a loss over what to say, how much to say, how to say it.

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If I remember correctly, I think that Maria Shriver authored a children's book about cancer.

Your doctor will know about whether to withdraw your mom from the decadron or not. There is a formula for it, depending on the dose and the length of time a person is on it. If is for a short period of time then it is no problem in most cases to stop abruptly. Over a longer time period, then the doctor will prescribe a taper. All doctors know about this. So don't worry.

Cindi o'h

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((((((((((Bet and Mom)))))))) Welcome Bet, sorry to hear about your mom. Please know that this is a wonderful board, with great, caring people. Your mom sounds like a very strong and determined woman, that will give this disease a real good kick back! We are here for you both.

Peace and blessings

Annjael

P.S. And mom,,,,,you go girl!!!!!!!

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Hi Bet and Ann. Welcome to our wonderful board. I am so sorry you have to be here but you will find this board is comprised of the very best group of folks you could ever find! Like you, I live in Florida. I'm in Palm Bay which is just south of Melbourne. My husband was a victim of SCLC, so I have an idea of what you are going through right now. It sounds like your mom has a very proactive doctor which is a very good thing. My husband had a wonderful doctor at MD Anderson in Orlando. Please keep in touch with us and know that we are all here for you!!!!

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Bet,

Another heartfelt welcome -- although of course I'm sorry you have to be here. I love your mom's comment about making her doctor famous! She sounds like quite a character, and I hope she does just that. Others will have much more information for you than I will, but I wanted to let you know you and your mom are in my thoughts and prayers.

BeckyCW

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