New Comer with so many questions

[Petunia]

I am very new to this all (not just the cancer but also typing to other people on the computer.) I found this site weeks ago and would just endlessly search it, and then one day I said "Why not? Let me just type." As in a prior post, my mother just got diagnose with ext. sclc. "She was a smoker, as was I. She is not yet 70 and I am not yet 40. She has since quit since her diagnosis and I have also. She has smoked for over 40 years and I smoked for over 20. Quitting is the easiest and hardest thing I have done. Easiest because I know how dangerous it is and that it is taking my world away. Hardest because it has been my comfort, my friend, my stress reducer for so many years. For the smokers, have you quit or still smoked? I told my mother to just keep smoking because it was something she enjoyed, but can quitting help?

Ever since this "cancer word" came into our lives, and it has only been 3 weeks, it seems that every where we look cancer is following us. All of the t.v. shows have to do about cancer, conversations seem to lead to cancer. I look at others who I now can tell have had chemo... But the even more horrible part is I also look at others, and think "Why not them?".. they are so miserable, not enjoying life, no care to do anything with themselves or to even get out of bed. And this is making me seem like I have already turned into this different person. Like the "c" word has changed me. In actuality it has changed our whole lives. Nothing is the same once this word enters your family.

I also feel like I have been so strong around my mother, where in reality I am not. I now see where she got the strength from when we were going through this with her mother. I have yet to cry in front of her. She knows exactly how I feel,me being the "Ox" of the family, however I really am not. I am only okay when I am around her. I was okay yesterday, however, today was not able to stop crying. I can break down with my mom at any moment, however, I walk away because I don't want her to be upset. Males in our family, for some reason, do not hide their feelings. I want to know: Is it better if my mom and I have a breakdown moment together or will it make her depressed because, although she knows exactly what I am going through, it is different when you see it?

Also, in regards to chemo, when do you begin the effects, if any,of chemo? She is done with her 3rd day of her 1st cycle and has been fine. She is doing her every day routine..not that it was much because she is retired, but looks great. Can anyone give any tips on how to be okay during chemo? Are there certain foods that you have used that helped boost your immune system? We go next week to check her WBC and I am just praying that they are okay. I hate the fact that she has to get tested every week. I do not mean to be a "downer" because I am SO not. I believe in the positive, and this site has helped me with that. Thanks for listening

[Joppette]

Hi Petunia,

I was surprised to find this from Thursday with no one posting to it! One thing I think I want to start with is this: lung cancer is a disease. No one deserves it, smoker, ex-smoker or never-smoker. Not eveyone who smokes gets this disease, and not every who never smoked is safe from this disease. If you look at the statistics, a lot more people get lung cancer that never smoked, or quit over 20 years ago. So please don't blame yourself or your Mom herself.

As for the other questions about chemo, and others, could you give us more details of what is happening with her treatment? Was it operable. Are they doing radiation therapy. Did it spread beyond the lungs to the lymph nodes or even further. All of these details will help us. And then if she did start chemo, what kind of chemo is she being given. Some common names that I'm familiar with are Carboplatin, Taxol, Taxetere, Cisplatin, Navelbein, and there are many others. That will help us.

So if you could give us as many details as you can it will help us to help you!

Judy in MI

[Petunia]

Thank you for responding and thank you for your response about the disease. You are right... it is a disease. It took me a while to even start typing on this website and I think many people do the same. Sometimes you just need to vent and that is what I was doing.

She is on carboplatin and epostide (not sure of spelling and I think it is like cisplatin)) It has spread to her liver and to her adrenal glands above her kidney and her lymph nodes are swollen in her throat and around her lungs and in her body so I am not sure if that means it spread to the lymph nodes (I am assuming so.) According to tests, her lymph nodes have masses with cm so I am guessing it spread to her lymph nodes. Correct? She also has the beginning of a collapsed lung. The last test did not show that it spread to the other lung. She got a ct scan done in the beginning and the doctor it looked fine, although I am now learning about PCI, a preventative measure for mets to the brain.

They did not mention radiation yet because I think they are waiting to see what chemo does, or they don't think that is an option... I am not sure. Do most people go for second opinions? I don't see what a second opinion may do if it is basically in black and white. Maybe there are new trials out there. So far she is doing okay from the chemo, just a little tired. It has only been a week though and I know some symptoms do not start until after that. We are still waiting to see how her WBC are. Basically they say 6 month to 18 months, although I hear of stories (on here and from friends) where that means nothing. It is the will to be here and positive thinking.

This might seem like a silly question, however, any experience with synthetic wigs verses real hair wigs? I know this is the least of her problems but I want to make sure she feels comfortable and at least, a little normal, once she loses her hair.

How are you doing with you nsclc? Are you still going through treatments or are you NED (which I think I have learned is no evidence of disease..not sure) I wish you all the luck with your recovery. I believe you joined last year and you have given support to so many people on this site. Were you able to have surgery to help with your disease? Thanks for everything (I love you smiley shirt... it reminds everyone to keep smiling and keep their hopes up!)

[dianew]

Petunia - I want to welcome you here. No one wants to be here, but when you are dealing with cancer sometimes it is only others in the same boat who can relate. I am a patient, not a caregiver, so I can speak to what it must be like for you to see your mom going through this.

As Judy said, this is a disease and whether a smoker, former smoker, or never smoker, no one deserves cancer. I am really glad you stopped smoking. I have heard that treatment is more effective if you are not smoking, so if you can encourage your mom to stop, it would be beneficial I think. But as a former smoker, I know just how hard that can be.

I had carboplatin/taxol with concurrent radiation, which is fairly standard for non small cell, but small cell is treated differently and I don't know a lot about that. As for second opinions, I don't think they are every a bad thing - if nothing else it can confirm that the what her doctor is doing is most likely the best course of action for your mom. As for side effects - everyone is different. Some people have a lot of them, and some breeze right through. For me, the side effects increased with the number of treatments I had. It is important for your mom to stay really hydrated. As for food, the main thing during treatment is that she keep her weight and strength up. I ate whatever I thought I could keep down - I worried about eating healthier after treatment.

I can't speak too much on the subject of wigs. I went out and bought two - synthetic not hair. Real hair was much more expensive. I've since learned that the American Cancer Society offices have wigs, hats and scarves which they give free if they have something you like. While the wigs looked fine - I just personally hated wearing them so most of the time I didn't. I had treatment during the winter and wore wool hats. I didn't go out a lot during treatment, and at the cancer center no one looks twice at someone without hair - it's way too common. I did wear them once or twice though, mostly because I didn't want to embarass my granddaughters in public.

You might also want to check out cancergrace.org if you haven't already done so. You should be able to find all kinds of information on small cell and its treatments there. There are doctors who, although they can't give actual medical advice, can answer questions in a general way.

I will be keeping you and your mom in my thoughts. Please keep us posted on how you are both doing.

Diane

[Joppette]

Good morning Petunia,

I'm so glad Diane came in here too. I agree with all that she said. We are all different. As for wigs, I got a synthetic one because the woman that owned the wig store is a cancer survivor. She counseled me to not spend the big bucks on the real hair wigs. She said they are too expensive, but also extremely hot. So I got a pretty one that was synthetic. Like Diane, I didn't wear it often. I did wear it if we were going out, where I didn't want to talk about cancer. Obviously when people see you are bald, the topic comes up. So if it was a nice night out, I'd wear it. Otherwise I wore a lot of soft, warm hats. The American Cancer Society does sell inexpensive hats too. Here's a link to their web site for their cute hats. I'm sure they give stuff away too. But I found a lot of stuff here for not much money. http://www.tlcdirect.org/

I had Carboplatin/Taxol the first time. The second time I'm getting Cisplatin/Navelbine. I have to be very thankful because my cancer did not spread beyond the lung, so I was able to have surgery to remove it both times, and didn't need concurrent radiation at all. Your Mom's has spread hence the other treatments they are offering.

For the brain issue, it is highly recommended with SCLC to have PCI. I know that here as WBR, or Whole Brain Radiation. I recently heard it referred to as PCI so I knew what you were talking about. Frequently the lung cancer will present itself in the brain with SCLC, and having the radiation can avoid all kinds of complications and problems. My Mom had SCLC and had WBR with excellent results. While it didn't save her life, it did prolong it with good quality of life.

Venting is ALWAYS good. That is why this place is here so vent away.

With it being presented in her liver and adrenal glands, it's safe to assume it did spread to her lymph glands. Second opinions are always an option of course. Don't worry too much about the time lines they gave you. Those are based on statistics because they have to be! But as you know from reading here many people just don't follow those time lines.

My treatment is going well with the chemo. I am having some tough side effects now,but I am doing okay. I have good pain control, and the ability to rest when I need to, so it's going good. With statistics, they tell me that I have a 50/50 chance of the cancer coming back given that it would be the third time it came back. But that is IF it comes back. I"m not worrying about time lines. I just want to live the best I can for as long as God sees fit and let him worry about the rest of it.

Take care,

If you have more questions, please let us know. Diane gave you good advice on cancer grace. It's a great web site to get feedback (not medical advice). The site is http://www.cancergrace.org. If you sign in there, use the same one you have here so those of us there know it is you!

God bless you.

Judy in MI

[Joppette]

When I posted earlier, it was REALLY early in the morning. Now with the sun shining, I just wanted to wish you a lovely day.

MI Judy

[Outrider1]

Petunia,

My name is Dawn, and I saw your post this afternoon. I too have SCLC-ext. diagnosed in May of 08. And my nasty little secret is that I still smoke. I figured that since I was not a drinker or taking recreational drugs I was gonna use what was legal, to calm my fears. I will admit that Lungevity and Cancergrace were both life savers. When I was diagnosed the bottom of my right lung lob was partially collapsed and the middle of the right lobe was completely collapsed. I had mets everywhere (read my story I go into more detail there) I was also started on carboplatin and etopiside (VP16) infusions as well as two days of 5 pills a day of etopiside pills for day 3 and 4.

I was considered to have had a "complete response" by Oct of 08, and had two of PCI. one that I cut short cause I was so tired of being under a microscope and a pin cushion, and another complete round after I started having severe migraines.(which is another long story)

Anyway just last August, they found I had some lesions om the outside of my skull and gave me two months of chemo, before I moved away from TX to NW of LittleRock, Ark.

The Dr.s here do not believe my initial diagnosis was correct so they are now testing for everything under the sun. Needless to say I am getting a littlle fed up with them. I requested copies of all of my x-rays, ct's, pet scans and all of the paperwork that went with them, as I already had copies of all my records (well over 500 pages) and at my next visit (in April) I and gonna let em' have it (so to speak).

As the others said before me, this is THE place to come for answers, venting, and good ole warm fuzzies when you get down and need a warm shoulder or helping hand.

If you have more question, ask away. some one will be along to lend an eye and find an answer for you.

Dawn

(Outrider)

[Janet B]

Petunia,

you have gotten some very good advice already, I just wanted to welcome you and tell you how glad I am that you just started typing! Being here will be such a huge help, for answers, for support, and just to chat with others who understand what you are going through.

I can't really answer any of your questions concerning chemo, I have not had traditional chemo, yet. Nor can I help with the wig question, when I lost my hair from side effects of Tarceva (a chemo pill). I chose to just wear hats or a scarf. I do know that my hospital has a "boutique" that sells hats, scarfs and wigs, as well as has classes on how to wear them and take care of your skin and makeup. You should check out if there is something like that in your mom's hospital.

As for second opinions. If your mom is up for it I say - do it! There could be two outcomes, the second opinion can totally agree with the first doctor on a treatment plan or they can disagree. If they agree, you have peace of mind. If they disagree you will have to either do your own research to decide who you want to go with or go for even a third opinion. From my experience, (which is somewhat different than your moms because I have nsclc) my first Dr. Was going to give me the standard treatment plan and gave me little hope of survival. My second (and third) opinion tested me for genetic mutations which put me on the regimen I am on now and I have been on for 5 years. Of course, also very important, I believe, your mom has to like the Dr, and trust him/her. That makes a big difference.

Peace

[Petunia]

Good evening,

I just wanted to thank everyone for your well wishes, advise and response. It does make this "journey" easier to know that there are people there who have been on their own journey and are strong. Judy- you are an absolute doll - When I saw your response about having a lovely day I was not on a "high" day, however, you made my day get better because you put positive thoughts in my head. Your response made others respond and it has all been so helpful. Diane- thank you very much for the other website-cancergrace. I have not been able to look at it yet but it sounds also very helpful. It also helps to hear how others are doing on chemo. My mom is being a good patient and drinking her fluids even though she doesn't want to. Janet- you are right about the other opinions- if it gives my mother more peace of mind I am fine with that. It is just scary to hear the same diagnosis more than once. I keep daydreaming that I am going to go to the other opinions and they are going to tell us the other doctors were wrong and it is just a benign tumor and it can be taken out and our lives will go back to normal. Dawn- I read your story and how horrible it is that you had to get tossed from one diagnosis to another. I am so sorry you had/have to go through that. As for your April appointment- you let them have it! Don't hold back (you seem like a spitfire- I love it!)

This website has been my saving grace at this time in my life and it is only the beginning. It is amazing how many people are living with this disease. Prior to my experience, I had no idea. It is amazing how you tend to bond with people that you have never met. I told my husband I have "new friends" and he is happy I have others to help me through this time. You are all so strong! You make me feel stronger, which in turn, makes my mother feel stronger.

So far she is doing well on the chemo. Her WBC were low but I guess not low enough to worry about because the doctor didn't do anything. She gets checked again next week. Her blood pressure was very low so the dr. had her lower her daily pressure medicine. She was just told not to go to crowded places. She has been stuck in the house and was looking forward to going shopping but now she can't. Her only outing, other than getting stuck with needles, was wig shopping. It was very emotional in the beginning, and it was very hard to see her sad. It was also difficult to comprehend how much our lives have changed in just a month. We used to go shopping all the time together (for clothes, stuff for the house) and now this was our shopping experience. I hope we will be able to have or "old" shopping experiences again someday. I just don't think our lives will ever be like they were a month ago and I am still trying to understand and digest this. I just wanted to end by saying thank you to all my new friends. I am sending my well wishes and prayers to you and your families. Stay strong and know that you now have one more person sending good vibes your way. Thanks for all your help! It means more than you know.