Dear Lungevity Community,

I'm uncertain as to how I found this site but I am very glad I have. I've been reading posts for a couple of weeks now and decided to jump on board.

I've left my home outside of Little Rock to stay and help my Dad here in Missouri. We are in a very rural and small community. I'm sure this website will help me feel surrounded by folks.

I wished I had all the detailed information of my Dad's lung cancer history as I've noticed in most of your posts, but I don't. I'll just have to summarize it in a nutshell.

January 7, 2007 is when we found out Dad had Stage IV lung cancer, left lung. This was discovered while trying to detect what was creating the extreme pain of his left arm. Besides in the lung, the cancer was in the bone of the left arm as well as in his lymph nodes. He had surgery on his arm, followed with radiation and then several series of chemo. It was last month that he was told the chemo was not working as there was a new spot now on the lung as well as a small spot on his liver. I'm not sure of which chemo drugs were used along the way, I know the chemo has been on going for some time though. He will now be on the drug Tarceva for 2 months at which time he will get more tests. If this drug is holding the cancer at bay, he will continue to take it. If not, then he will discontinue taking it. It's my understanding that this is pretty much it as far as the plan of treatment. The doctor did say that if he was not taking Tarceva that hospice could come in at this time but since he's on Tarceva this is still a treatment for his disease and they won't come in until he's no longer being treated.

I guess you can tell that I am not very informed medically about all of this which is why I am looking forward to being a part of this community. I have been to several doctor's visits in the nearly 2 years of my Dad's journey. I do love his doctors and staff. I've just basically tried not to take over my Dad's "business" and let him take whatever route he chose. It's that he is now so weak and frail it's hard for him to do much of anything. I am now here to stay and I'm sure I'll be getting very educated along the way.

I'm just so fearful of what lies ahead and hope I can provide the care my Dad will need. It's all on me so I hope I don't let myself down but mainly him. Right now I don't have any questions, I guess I'm just seeking some reasurance as a caregiver.

Thank you in advance for any and all forms of support.

Debra

Welcome Debra,I cant give you much information from a caregiver point of view but your father sounds like he has been blessed with a very wonderful daughter.Im sure many more will be checking in shortly to welcome you and help you with any caregiver questions you may have. I am glad you found this board and my prayers are with you and your father.

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Dxed nslc stage2b,Aug.05 had right lung and 17 nodes removed which 2 had shown to be effected.August 27,05 had surgery redone again to stop bleeding. Started chemo sept.05 as a precaustioary. Have 3 month visit followups and have been ned so far and am hoping and praying to stay that way.Grade3 squamous cell type(T2,N1,Mo)tumor 10.5 cemtimeters,1 peribronchial node and 1 10R node involved

Hi, Debra, welcome to the group. I hope your dad gets good benefit from the Tarceva. For most patients, it's not quite as hard on the body as the various IV chemos. I was on Tarceva for 16 months, and once I figured out how to control the rash and some of the lesser side effects, I was comfortable with the treatment and felt "good inside" most of the time.

Bless you for being such a caring daughter. Anytime something unusual or unfamiliar happens with your dad's treatment and side effects, post a quick question and we'll be glad to help. Aloha,

Ned

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Ned is just my nickname, though it would be nice to merge it with the other meaning eventually...

Aloha means "Hello, goodbye, love, compassion, welcome, good wishes." It means belonging to others with a common humanity. It's defined better as a feeling in the heart than by words.

Dx NSCLC adenocarcinoma IIIb Sep 2006, now stage IV. Taxol+Carboplatin+Avastin 4 mo., Avastin 8 mo., Tarceva 16 mo., Alimta 12 mo. (sometimes combined with Cisplatin or Carboplatin), Navelbine since Feb 2010, 10 sessions of WBR in March 2011. See My Cancer Journey: viewtopic.php?p=351369#p351369 — UPDATED 03/05/2011.

Above left: Our golden retriever Rosie, who joined the family on 3/5/08 at the playful age of 2.

Below: Hannah, our golden companion 1994-2007.

Its good that you are letting dad make the decisions and guiding him and supporting him along the way. Its ok to be scared. It iis normal to be scared. You are doing the right things. As long as you and dad are comfortable and HAPPY with dads care and his team that's good. If you ever have a doubt as to what they tell you GET a 2nd opinion or a 3rd opinion. Sorry you have to be here but We are glad that you are. Post up whenever the need arises. IT can be anything at all even just getting something off of your mind.

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April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!

Hello Debra,

Welcome to the group. The people here are "family" in a very true sense of that word.

You are a wonderful daughter. My husband and I have the advantage of having our dear daughter visit every Sunday for dinner, and is available to help at a moment's notice.

As to the "journey" with lung cancer, it is a great help to ask as many questions of the doctors as you need. I write them down (getting too old to remember everything ). We have been asking them now for four years, eight months into this trek.

Never feel hesitant about coming here, even if it is to vent. The reason doesn't matter. We are always here.

This community has given much-needed support whenever it was asked.

Barbara

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Bill died peacefully on March 25, 2010. He was very much loved, and will be sorely missed.

Link to "Bill's Story," and more detailed list of treatment regimens:

http://www.lungevity.org/l_community/viewtopic.php?t=37269

Photo: Barbara and Great Granddaughter KayMarie taken January 2010 at Rehab where Bill was gaining strength.

Hi Debra Ann - This is the best place to be. I've tried some other support over the past year and this is the place that is bookmarked. Everyone I have met in this virtual world is fantastic.

What a change to your life, the cancer and the move. You have a lot to adjust to. What you are doing is wonderful and your dad I'm sure is so appreciative.

I think the beginning is very scary, the adjustment is huge. But I wouldn't trade being here for anything - I value each day in a new way.

Thoughts and prayers for you and your family. Kathleen

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Husband: Glenn, Stage IV Adenocarcinoma, both lungs, spot in left hip. Former heavy smoker. Quit smoking August '08!

11.18.09 Started maintenance chemo - alimta only.
10.30.09 - One year since we found out Stage IV. Cancer is STABLE with no progression!
August - October - long SLOW recovery. From bedridden to a walker to a cane, and now Glenn is walking and driving!
7.31.09 PET Scan shows improvement EVERYWHERE!
May-August 09 - MANY trips to the hospital for side effects from platinum chemo - autonomic neuropathy is the worst. Went to inpatient rehab.
4.15.09 Improvement with mets. 2 more rounds of Cisplatin/Gemzar/Avastin combo
2.12.09 Start Cisplatin,Gemzar, Avastin combo
1.29.09 PET Scan showed spot in hip sliightly larger and two new small spots in ribs
1.30.09 Bronchoscopy showed no new cancer in lungs
1.19.09 - follow-up CT Scan, two tumors shrinking, signs of lung infiltration - bronchoscopy scheduled
11.13.08 - Chemo begins- carboplatin, taxol, avastin, 3 wk cycles
10.31.08 - PET Scan - three masses, hot spots around pulmonary nodules, 1 hot spot in left hip
10.24.08 - Needle Biopsy - positive for adenocarcinoma
10.10.08 - Bronchoscopy - negative for cancer, infection
9.27.08 - Abnomal chest CT
9.25.08 - Abnormal Chest x-ray
9.24.08 - PCP for pneumonia
8.08 - feet swelling, both feet

Debra Ann

Reading your post takes me back over the years. I can remember the fear and the feelings of inadaquacy when faced with the care of someone you love. Not long after I joined this board in 2003 I posted a message to new caregivers. I really believe that what I said covered so much of what we all face as caregivers. I hope you don't mind if I repost here in response to your questions. Yes you can do it but it will be the ride of your life. So at the rish of sounding too self sure here goes.

I have a message for those of you who are new here. There are some things that you need to know as you embark upon this journy known as lung cancer.

This will be the hardest battle that you will ever fight. It takes so much from you. It will make you cry in pain and fear as well as frustration. It will make you curse fate and at times even God. Your heart will be broken over and over. Many times you will feel like you are alone in this world and no one understands. Especially if your battle ends as mine did in far too short a time.

Fortunatly you have found this board. I was not so lucky at the time I fought the battle with my Johnny. You will find so many caring and loving people here.

Lung cancer takes it's toll quickly and long term for those of us who travel this road of fear, pain and uncertainty. It will take everything you are and have. Just when you think that you have no more to give it will demand more. You will find out then that you can reach down into the depths of yourself and find more to give.

There is also a lot that you will recieve without even knowing it for a very long time. You will learn the depth and power of love. You will find a side of yourself that you never knew existed. You will experience love in every way from pain to the most high reaches of it's glory. You will be forced to learn patience and many times your patience will be tried. You will find a faith in God or whoever you believe in that is the strongest it has ever been. Often without realizing it you will find yourself either thanking God or begging him for help. Never again will you see someone in pain either physical or emotional and turn away. The depth of your compassion will amaze you. You will know other peoples pain and they will know yours. All of your beliefs will be tested and many will change. If and when the battle is lost you will find a belief in another life. There is no other way that you can go through these times without learning so many things.

Cancer is a mean and nasty demon. It offen strikes when life is finally going your way and giving you what you have worked and hoped for all of your life. The person who has cancer will go through many stages both physical and emotional. You will be taken along for the ride. There will be times you want to stop and get off but the rollercoaster is moving far too fast.

I have suffered much pain because of cancer and what it cost me with the death of both my mother and the love of my life. I will never be the same person I was just a few short years ago. In many ways that is hard to accept but in many others it makes me proud to see the person that I have become.

We question fate and God but I have come to believe that we are given this road to make us grow. To what purpose who knows. Ours is to accept and maybe in time we will know the answers. God Bless each and every one of you. The road ahead may be long and frightening but it is a road that you will go down and someday the end of your road will be appearant. Always remember you are not alone. God is with you and even if you do not believe in God know that there are many of us here who have been or are where you are going. Together our burdons will be lighter than they would have been otherwise. Remember to stay positive and above all remember that love is the one thing that this disease doesn't destroy instead it makes you so much more aware of it's existance. Lillian

Lillian,

You have said it beautifully. You have touched all the points.

Thank you, dear Lillian.

Barbara

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Bill died peacefully on March 25, 2010. He was very much loved, and will be sorely missed.

Link to "Bill's Story," and more detailed list of treatment regimens:

http://www.lungevity.org/l_community/viewtopic.php?t=37269

Photo: Barbara and Great Granddaughter KayMarie taken January 2010 at Rehab where Bill was gaining strength.

Debra--

I know that it sounds like you are in a very rural community, but you might check and see if there are any 'bridge' services available, by that I mean, there are some agencies that will come and help with care for folks who are taking Tarceva or pursuing treatment. It might be worth doing some sleuthing through the phone book or the internet to find out if there is something like that in your area. I am in a fairly small community right now, but I know that in this area people who are still pursuing treatment, but perhaps not as agressively still qualify for in-home services. Often the docs just talk about the hospices/facilities affiliated with their hospital.

Past that, I will say that you CAN do this. I can hear the compassion and love for your father in your post and that will bring you the strength that you need to be his advocate and support no matter what comes his way.

Many folks have found success with Tarceva. I hope that your Dad will be one of those people!!!

Keep coming here and asking questions!

Val

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"All shall be well, and all shall be well, and all manner of things shall be well... No matter what."
--Julian of Norwich/Madeleine L'Engle

My Mom, Carol, was diagnosed with Stage IV NSCLC with several mets to the bones in November of 2004, when she was 57. Treatment included radiation to relieve the bone pain, Zometa to strengthen her bones, Cisplatin/Gemzar as a first line treatment, and Alimta as a second line treatment. Mom was referred to hospice while waiting for a Perifosine trial to begin, and she died July 19, 2005. Not a day goes by that I don't long for my mama.]

www.digtoesin.wordpress.com
www.newwaylc.blogspot.com

Debra,
you've gotten a lot of great supportive advice already- I just wanted to welcome you to our community and let you know you're not alone.

As long as what you're going is from the heart you're doing the right thing adn I'll bet you're dad is so proud and thankful to have you there in his corner.

Tarceva has worked very well for some of our members here. I hope that's the case for your dad.

I'll be keeping you both in my prayers and on the lookout for your updates.

Blessings,
Katie

Hi Debra--I'm late to welcoming you, but I've been in NC with my mom who was diagnosed with LC two days before your dad! So we've been in this battle for about the same amount of time.

This is a great community and we will help you feel connected and answer whatever questions we can.

Susan

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76 year-old mom diagnosed with stage IV lung cancer January 5, 2007.

15 radiation treatments to the spine and four rounds of chemo, Jan-May, 2007.

Stable disease May, 2007-May, 2008.

Bone scan May, 2008 shows new mets in the spine, pelvis and ribs.

July, 2008--finished radiation and has a Quadramet treatment.

October, 2008--Scans show mild progression. Began chemo (carbo/taxol/avistin). Will have four rounds of threatment (every 21 days) and scan in January.

01/05/2009--TWO YEAR SURVIVOR!

4/2009--STABLE! No treatment. Next scan in July

7/2009--Scan shows pleural effusion. Fluid drained and malignant. Cancer has spread to other lung and a 13 mm lesion is seen on the liver. Mom to begin Alimta on 8/3

11/2009--Alimta was hard on mom and scans showed progression.

12/2009--began Tarceva, noticed almost immediate improvement.

2/25/2010--Celebrated Mom's 80th birthday!

5/15/2010--Mom watched her oldest granddaughter graduate from college and then paritied well into the night! She's still feeling great.

6/15/2010--Mom watched her youngest granddaughter graduate from high school. Still feeling great!

8/2010-10/2010--Mom begins feeling tired and stays in bed more and more. Scans reveal that the cancer is moving rapidly throughout her body.

10/13/2010--Mom wins her battle once and for all, and passes to a place where the cancer can no longer touch her.

For a more detailed timeline see:

http://www.lungevity.org/l_community/viewtopic.php?p=360385#360385

Thank you very much for the welcome. I actually put the wrong date of my Dad being diagnosed. It was January 7, 2008. I still get hung up with the 2007 since that is when everything had actually started.

I hope your Mom is doing better. My Dad has had a nice week other than being weak. He just keeps on trying to get up and go though and I am so glad he has the desire to do so.

Right now he simply can't eat much. He does have the desire. Gives me his order, I cook it, he takes 2-3 bites. I eat the rest! I'll probably gain 50 pounds being here although I did read a post where someone lost 35, now that I could handle.

Have a wonderful Wednesday!

Debra

No matter how long you've been in the fight, I'm glad you found us.

As my mom has lost weight, she has been fussing at my dad for gaining. Of course she taked 2-3 bites of her food and gives the rest to my dad to finish. Of course he's gained weight! LOL!

Susan

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76 year-old mom diagnosed with stage IV lung cancer January 5, 2007.

15 radiation treatments to the spine and four rounds of chemo, Jan-May, 2007.

Stable disease May, 2007-May, 2008.

Bone scan May, 2008 shows new mets in the spine, pelvis and ribs.

July, 2008--finished radiation and has a Quadramet treatment.

October, 2008--Scans show mild progression. Began chemo (carbo/taxol/avistin). Will have four rounds of threatment (every 21 days) and scan in January.

01/05/2009--TWO YEAR SURVIVOR!

4/2009--STABLE! No treatment. Next scan in July

7/2009--Scan shows pleural effusion. Fluid drained and malignant. Cancer has spread to other lung and a 13 mm lesion is seen on the liver. Mom to begin Alimta on 8/3

11/2009--Alimta was hard on mom and scans showed progression.

12/2009--began Tarceva, noticed almost immediate improvement.

2/25/2010--Celebrated Mom's 80th birthday!

5/15/2010--Mom watched her oldest granddaughter graduate from college and then paritied well into the night! She's still feeling great.

6/15/2010--Mom watched her youngest granddaughter graduate from high school. Still feeling great!

8/2010-10/2010--Mom begins feeling tired and stays in bed more and more. Scans reveal that the cancer is moving rapidly throughout her body.

10/13/2010--Mom wins her battle once and for all, and passes to a place where the cancer can no longer touch her.

For a more detailed timeline see:

http://www.lungevity.org/l_community/viewtopic.php?p=360385#360385