Totally new to this in every way.

[Benny boy]

I'm a 23 year old guy, older and younger brother, sensitive person, party animal, and the son of two people whom I consider my best friends. I am still living a life that doesn't face many of the realities of getting older. Never once have I had to experience the trials and tribulations of cancer, even in my distant family and friends.

I, along with my mother, father and older brother found out that my mom has lung cancer, which was discovered in her pleural fluid (meaning at least stage IIIb). Of course the four of us have been totally shocked and confused. My younger sister and brother (aged 20 & 15 respectively) have not heard the news because the brother is at camp and my sister is studying abroad in Ireland. Regardless of those facts, I have something else that's bothering me.

My mom does not want to know the results of her PET scan from last Thursday. However, the Onc. called my father, to tell him the results, and warned him that my mother would have to learn of the results this Thursday at her first Chemo session (Taxol/Carbo, Zometa). My Dad found out about the Zometa because the doctor told him that there is probably metastasis in the bones. Later my Dad asked me if I had researched anything about lung cancer spreading to the bones. I had researched and told him that I thought it probably isn't that bad because she hadn't felt any symptoms. My dad then confided in me that she has started to have really bad pain in her ribs and hasn't wanted to tell anyone. That news just floored me.

My dad is only fifty, my mom only five years his senior and she hasn't smoked in 20 years (she has NSCLC adenocarcinoma). They don't believe that her cancer was caused by smoking. Anyway, my question is what kind of symptoms can I expect. I just do better when I know what may be coming.

She is short of breath sometimes and has little caughing fits, but overall her vitality and demeanor seem great, although she sometimes breaks down crying, and being that she is small, she looks like a helpless 10 year-old (makes me feel like I'm watching someone drowning and can only hold their hand, but not pull them out).

I have not yet felt totally sad, but rather angry or in denial and I am confused. Basically I want to know what kind of symptoms can I expect when the disease progresses symptomatically, how fast can it happen, and whatever else you know.

I am sorry for rambling so much, but I just found this site, and at least venting to people who understand is important to me, whether or not they respond.

Thank you for reading,

Ben

[Jana_W]

Hi Ben

I am sorry to have to meet you this way, but your post showed a great deal of love for your Mum so you have come to the right place for support.

It is a horrible time when going through a new cancer diagnosis. I had to go through it about a year ago when my Mum was diagnosed with Stage IV NSCLC (adenocarcinoma) and felt much like you in that I count my parents as amongst my best friends and have never really had to endure any tragedy or loss. I now realise that I had been so lucky to have lived 32 years of my life that way, and that many people face the fear of loss at a much earlier age than me.

You asked about symptoms. I guess everyone is different so I can only relay to you my Mum's experience. Take heart, as my Mum is pretty much symptom-free one year after being diagnosed. She had secondaries in her mediastinal lymph nodes and rib. The rib was removed for histology. She still gets some pain in this area. Celebrex is apparently good for bone pain, so you might want your Mum to mention that to the onc. Mum also gets a bit short of breath and anaemic whilst on chemo, with slight nausea as well. However, once she stopped chemo these side effects stopped. It really was the chemo that made her more sick than the cancer (but hopefully it was killing the cancer at the same time!!!). Mum also gets a bit out of puff now, but she never really was a racehorse anyway. Otherwise, she is all good. She goes about life just the same as she used to. I hope this helps to give you some idea (and also some hope) about things.

You mentioned that the onc things there could be bone mets. Is your Mum scheduled to have a bone scan? From my understanding this is the best way to determine if there are bone mets. This is what my Mum had after her first PET scan showed suspicious "hot spots".

There is alot of treatment available out there so my best advice to you is to read as much as you can, do not have a closed mind to anything that might work, and love your Mum as much as you can. Please let us know how the appointment goes on Thursday.

with best wishes

Jana

xx

[Elaine]

Ben

You are the age of my children, who are 23 and almost 25. You show a great deal of maturity along with your concern for your mom.

I know your mom is pretty upset now, which is probably a way understatement and she probably hates that she needs you in this way since she knows how young you are and what that means cos she was young once, too.

I don't have any answers, as all people are different and all cancers are different. Help her in whatever way you can. Maybe she will let you go to the Dr with her so you can hear what he or she has to say. Or maybe she can take a recorder. Ask what she needs from you, and if she says nothing don't really believe it. Also help your dad. I hope you also have people who can help you, too. We here can do what we can.

There is a lot of hope here and support for the times when things go roughly. There are also some great stories of long term survival. The Doctors really don't know how long anyone has; they are only guesstimating. Whether a person lives a day or years past their diagnosis is not really a matter of his or her will, only, but based on so many factors.

If you have time, look around in the archives and you can learn a lot.

I have so much empathy for you and wish you nothing but strength for the coming fight.

I so wish you didn't have to be here and that none of us did.

My love to you and your family.

elaine

[Benny boy]

Thank you Jana and Elaine for your responses. I am glad that both of you, and everybody here, are concerned not only for their own well-being, but are willing to give time to others. My heart goes out to both of you as well.

[Fall54]

Hi Ben,

I have a rather different story to tell. My Brother was diagnosed with Stage IV NSCLC (adenocarcinoma) in mid January. It was found due to increasing back pain. He had back pain most of his life but this had become immobilizing. He was taken to the ER and all sorts of tests were taken. He had lung cancer that had spread to his liver( over 30 spots) and eaten through a bone in his back. Unbelievably, after doing a bone scan he did NOT have bone cancer. Why it had not spread I dont know. My Brother was always very lean and during his first round of chemo lost weight. Hold on, let me back up. He had radiation to his back first and only 10 times. He no longer had any pain in his back until just before he passed away. NONE, not even what he had known all through his life. He felt like a new man. He had chemo following that ( carbo/taxol) which resulted in a 50 % shrinkage in his tumors. He was happy and feeling good. He began to become short of breath and the type of chemo he was getting stopped working for him. His blood levels would drop and not recover. He needed blood tranfusions twice. His DR. started him on taxotere and he didnt fair well with this. His blood levels continued to drop and not recover and this chemo was not working for him either. The cancer spread to his heart and he had to have the fluid around his heart drained. They put in a window they call it to keep any further fluid draining into his chest cavity with hopes his body would absorb it. It did not. He decided he would stop all treatment as he wasent given much hope. He found a peace in knowing his fight was over and we lost him very shortly after that.

I did not tell you this to scare you as EVERY case is different. People all respond differently. I am praying your Mom does well and that you will have a very long time yet to enjoy her. Just remember one thing.... No one guarentees us the next minute and make the most of the time we have here every day. Make memories with your Mom and ALWAYS keep your faith. There are miracles all around us and many on this very board and many lurking.

I think the reason you have not felt very upset yet is that you are angry right now and it is just one of the stages we all go through as caregivers and cancer survivors. One thing I heard early on in this board is that your Mother is not dying with cancer but living with it. live it with her, be someone she can share her feelings( and there will come a time she will) with. Be a son that is someone she can be proud of in the face of adversity. Love her more than you ever have. She will need all of you in her corner to fight this raging beast!! My prayers are with you and your family. God is watching over you all and will help you get through what ever comes along.

God Bless You All,

Jane

[Benny boy]

Dear Jane,

I have only just found this site and I have already heard a lot about Alan just because everyone here seems to be so supportive of everyone else. Thank you for your information. I have always cherished the time I've had with my wonderful mom, but now I will take extra care to make sure I show more love, and hopefully I will be able to do so for another 23 years.

Ben

[caledon]

Hi Ben,

My Mother/best friend was diagnosed with NSCLC stage iv 3/04. I’m the youngest and Her caregiver (parents divorced long ago). Unfortunately I have no answers for you. Though Cancer types can loosely follow a similar progression the experience is different for each individual - trust me on this! Through my Mothers ordeal I have found that although medical technology has improved significantly over the last 50yrs when it comes to Cancer we have much to learn! Take it one day at a time. There will be good and bad days, good news and bad but you and your family will get through it!

My Mother is/was a medical professional herself (this has forced her to retire). She already knew the questions and the answers to the questions, the prognosis, and the best case/worst case scenario. Not only was this her profession but she is also a 34 yr survivor of Ovarian Cancer (found early due cyst rupture). I was too young to remember.

Be with her-- cherish her -- as she begins this fight! It is a roller coaster of emotion!

Read the “So many new people. Repeat post.” On the Caregiver/family board.

The people on this board are the best!

Mother dx 3/04 NSCLC stage iv with liver mets (approx. 6 in one lobe) no other involvement

Currently (07/04) condition stable with shrinkage to primary.

[Tracy]

Hi Ben,

My name is Tracy and I am 26. I am sorry to meet you this way, but here for you nonetheless. This site is so incredible, I am glad you found it. You are right in that the people here are so wonderful and caring and very supportive...I hope I can be for you as they have been for me.

My dad will be turning 51 in September and was diagnosed last April. Some did not think he would be still here now and I am so grateful he is. My parents are also my best friends, we travel together, hang out (even on friday nights!!) and always have sunday night dinners at their house. I am blessed to have two really great people in my life. And given our relationship it makes it that much harder to go through this, but I would never trade any future years of mindless time for the great ones in the past.

Recently my dad began having neck and shoulder pain and it was first thought that the cancer had mets. to his spine but then we were told it was his rib. At this point the doctors are uncertain and will not know any more until his CT scan scheduled for August 3. But I dont want to make this about my dad as this post is really for you.

I am the cheerleader in the family. Not literally ( I never liked cheerleaders!! lol!!) but emotionally. I do my best to always see the positive rather than dwell on the negative. On a bright sunny day I can stop and put everything on hold just so I can appreciate the warmth of the sun and thank god for another beautiful day...this is the way I choose to be. I am now a "live life to the fullest" kinda girl as prior to this my mom was diagnosed with breast cancer ( six year survivor ).

So if you ever need to vent, vent away! That is what I and everyone else is here for..to listen and offer whatever we can to help you through this journey. You and your family are in my prayers.

Tracy

[SJAS]

Ben,

Welcome to the board! You're going to be such a help to your family by linking up to this place. I don't get to this part often - mainly just have time to get to NSCLC and a couple of others, but want to particularly recommend the NSCLC section to you. I have picked up a lot of helpful tidbits from it and the support is fantastic.

My husband has NSCLC - adenocarcinoma also. It is always a challenge, but there are good moments too. Re the bone mets. Steve has a lot and just recently had to go on pain meds. Anyway, I know lots of info is just overwhelming in the beginning, so I won't clutter the already excellent info you're getting from other members. Just want you to know that we're here to help, support and even make you laugh sometimes. Take care

[Angie Daughter of Bill]

Hi Ben!

Just wanted to give you a warm welcome to the family here. My Dad was diagnosed with stage IV squamous cell carcinoma in January. He has done well. During his chemo, carbo/taxol and zometa for bone mets, the only side effect he had was fatigue. He was fatigued because it dropped his red blood count. He got shots of Aranesp about every other week which did seem to help a bit. Dad did get neuropathy in his feet from the chemo. (numbness in his feet.....it is not uncommon with carbo/taxol) About the bone mets.....my Dad's mets are in the spine. He has had slight discomfort from time to time. I think he has taken one pain pill for back pain. That's it. Our oncologist said that if he started to have increasing pain, we would radiate the spots on the spine. From what I hear, the radiation alleviates the pain rather well. As of now, my Dad is doing well. He gets out every day. He tends to all of his own needs.

My Dad is much the same as your Mom..........Dad really doesn't want to know every single detail of his disease. I take him to all of his appointments and I am the one who asks the questions, not Dad. I feel that it is really important for someone to be assertive and ask those hard and difficult questions. You HAVE to know what you are dealing with to fight it. If you know exactly what you are dealing with, you can arm yourself for the fight. It is hard to ask those questions, but someone needs to do it. There are all kinds of treatment options.......standard chemo, clinical trials.......but you have to know what you are dealing with.

I wish you and your family the best on this journey. It is not an easy journey. I thought that at age 33 I was a grown up with a husband and two children of my own, but I have had to grow up A LOT. There have been some very difficult things to deal with. My Dad is divorced. He lives with me and I am his primary caregiver. You can do this. Is there any way that you can go to the appointments with your Mom? If so, take a small tape recorder with you. Sometimes it gets overwhelming and you forget exactly what the dr. said.

In my thoughts and prayers~~~

Angie

[cathy]

Hi Ben,

First of all welcome to a place nobody really wants to be..My son is your age also so I know how your mom feels..She doesnt want you and your other siblings to worry about her...She really wants your family to continue to be normal like it was before you found out about the cancer..I dont have cancer but I am a mom and I know thats how I would want it..

As far as how your mom will feel everyone is different, some continue to work, while some have a more difficult time..Chemo has a come along way since the earlier days..

Tell your mom dont give up hope, there are many that are beating this monster that are in the late stages of LC, many on this board who are LIVING proof as you will soon see, watch as the responses pour in.

[Donna G]

Ben so glad you found us. We all know what an emotional roller coaster this disease brings. Sometimes a little denial can help us cope . It is so great that she has you to help her pick up the slack and do research. It is good to have someone go to the doctor with her and take notes or record , it is so hard to "hear" what the doctor has to say , all at once. Keep us posted. Donna G

[Pamela]

Hi, Ben. When I read your post, I vividly remembered the shock, fear, and just plain confusion we felt during the first few weeks after Dad was diagnosed. You hear medical terms and drug names and statistics (I hate statistics). A picture starts to form, but it is so incomplete that you don't know what's really happening or what information to trust.

From our experience with Dad, I would recommend that you begin organizing information in a binder or some system that works for you. You or your dad should write down what is said during each visit to the doctor -- or phone calls to the doctor. Record the date of each CT scan or MRI or PET scan, and get a copy of the reports. There is so much information -- and emotion can cloud your hearing -- so you don't always take it in at the time. Reviewing it can be a great help later as you begin to understand more about the disease and treatment.

I also strongly recommend that you research each and every medication that your mother is given. Know what the typical dosage is, possible side effects, possible adverse reactions and drug interactions. Then if you see something that doesn't seem right, you'll be able to ask informed questions.

Remember that oncologists are people, too. They do the best they can, but they aren't always right and sometimes they just make mistakes. If you do not understand something or if you have a feeling in your gut that things just aren't right, speak up. Ask here. You'll get answers AND support.

As said by others, your mother needs an advocate. If your dad can't do it, you may have to. Please don't assume that your mother and your family can put everything in the hands of the doctors and go along for the ride. The better informed you are, the better things will be for your mother.

I'm sorry you have to go through this. But it sounds like you already understand that supporting your mother during this time is an honor.

I'm pulling for your mother!

Pam

[Don Wood]

Ben, sorry about your mom. My wife is a non-smoker and got lung cancer, so it is not always caused by smoking. She has bone mets, and especially gets them in the ribs. Bone mets do not always cause pain, but when there is significant pain, it can be treated with radiation. Also, if any of the bone mets threaten bone integrity (where it may cause a fracture or break), radiation can also be used for that. Chemo is usually used for metastatic lung cancer. Chemo and radiation do have side effects, and it varies with the person. Fatigue and nausea are two. As someone here said, you become sick and tired of being sick and tired. The cancer can cause those symptoms too. Let us know how we may support you through this. Don

[kimblanchard]

Ben,

Thank God you found this site as I did last year. My mother was diagnosed last year with Stage IV adenocarcinoma and like you I was enjoying life with no close relatives having been sick or having cancer.

My family was totally blown away by my mother's diagnoses. She just turned 60 and was in no way ready to leave this world. My mother only lived 3 mos. after her diagnoses and we are all still devistated.

Everyone's situation is different. Do as I did and educate yourself as much as possible. Find out everything there is to know about your mom's cancer because time is of the essence! Talk to the doctors, take notes, keep a journal of everything from medications to aches and pains to dr. appointments and what they say. Ask any and all questions!! Never hesitate to speak up. Be proactive and don't just wait around for answers.

I started with R. Bloch's "Fighting Cancer" and went from there.

You are always welcome to PM me anytime. All the best to you. I'm sorry to had to find this website, but glad you did.

Kim

[Nancy B]

Hi Ben,

Welcome to our caring family. So sorry you have to be here. My son will be 23 in Sept. (he is our only child) and we are very close. I am the opposite of your Mom, I want to know everything and NOW. But my husband and son only want to hear that I am feeling good. They just worry alot I think.

My son is very busy with his life but he makes a point of calling me daily and comes by the house often.

Some really good suggestions here and a wealth of information - go up to search and you will find just about anything you want to know. Pamela's idea to put together a binder with copies of all reports and notes is a great one. I have done that and it sure makes it easier to talk with all the doctors. Sounds like you will be the one in your family to be the "knowledgable one" - there has to be one.

Oh, in your research - completely disregard the statistics - they are depressing and don't mean a thing.

Just love your Mom and lots of hugs are good. Your Mom and your family will be in my prayers. Take care of each other.

Hugs,

Nancy

[Andrea]

Ben,

Greetings to a NYer from a former NYer. I was born and raised there, my parents just moved out west 3 years ago. I feel for you b/c my mom was in a similar situation to your mom--stopped smoking over 20 years ago and seemed so healthy.

I am not sure what to tell you about bone mets and symptoms, just wanted to say I am sorry you have to go through this!

Since you are in Manhattan, have you gotten a second opinion at Sloans? Or maybe that is where she is beign treated. It always helps b/c different doctors view things differently.

[laberl]

Hi Ben,

Welcome-wish you didn't have to find us but glad that you did. My mom was diagnosed in February at age 55. She's had a rough time of it-Chemo and radiation were pretty hard on her. She has been off work since 2 weeks prior to diagnosis and they don't expect her to be strong enough to go back until January (treatments hopefully will be done with end of September).

She goes through phases of real weepiness- there was a good month there where she would burst in to tears a lot--because she was so overwhelmed by all of the people that cared about her --because she felt she was disrupting OUR lives --because it is just (bleeping) unfair.

When the pain from her liver mets got bad, they gave her a morphine pump for home and that was a Godsend. She's thankfully off of that and doing fine, but her #1 complaint is the fatigue. Several days after her chemo she is unable to get up and make herself toast or get a glass of water, etc.

She has lost a lot of weight --probably 30 pounds in the last three months. She's getting better about eating a lot of little meals a day and telling us when something sounds good -- at this point we'll feed her whatever she wants!

Doubt that helps at all-so far that has been our experience. Please feel free to PM me anytime.

Take Care-

[shelliemacs]

Nice to meet you Ben,

Gosh I am real sorry about your mom. I truly know the painful place where youe coming from. Its a choking kind of gut twisting sickening feeling that never goes away, but does ease some over a few weeks time.

My mom was dx'd with NSCLC in January of 2003 and I lost her in August of 2003, on my birthday she was burried. It was the most horrible time of my life or at least up until that point it was. 3 months Later in November of 2003 my dad came down with pneumonia, only it was not pneumonia, it was SCLC and I just lost him last month. On the day of my dads funeral, my sisters doctor called and told us that, yep you guessed it, my sister now has cancer, only hers is breast cancer. I am the baby and I am right now the only one without cancer and the only one left, I only have the one sister so she is it for me.

I can only tell you that with my mom, she did not want to know either, she let me handle all the medical mumbo jumbo. that way someone knew what she had and what she needed to do and she could remain somewhat closed off to her condition. With dad, I tried to pry my way in, but he kept allot from me since he fealt I had just done it and would not be able to handle it. Now with my sister, I feel like I am an oncologist without a diploma. I quiz the doctors and they give me dirty, somewhat puzzled looks as if to say "who the hell is she some undercover cancer cop" I should not know as much as I know about cancer at my age and life has sure handed me my fair share of lemons. I am a freaking lemonade expert at this point.

I urge you to get educated as much as possible about your moms condition. There will still be fear, but education and knowledge will keep the fear of the un-answered question out of your head. It will help you to know what they dr's are talking about and you can really keep them on their toes too.

[Benny boy]

I honestly can't say how grateful I am for all of the responses, (all quite long and detailed, which is good), and support for someone who just signed up last night. I am too fresh in this whole experience to give advice to anyone else, so I'm still in that selfish phase. However, I intend to be a part of this group for a long time no matter what comes, and maybe one day, some of you can turn to me as I learn more... Not just about the disease, but also about how it affects the family and beyond.

Regards

Ben

PS. I normally don't talk so cheezy or cliched, but I'm in a haze right now.