New member- unfortunately

Kaya5671 · New User Joined: 24 Sep 2008 Posts: 7 Location: ISRAEL

Hi all,
I am joining you in the most difficult journey of all...
My name is Kaya and I am 37 years old, living in ISRAEL, divorced + 2 small kids (3, 9) and I live with my boyfriend (47), and he is the love of my life. We are practically married...
He was diagnosed a week ago with stage IIIB adenocarcinoma to the right lung. He seems so normal and healthy, looking good and working hard. He does have the annoying cough and a pain in the right shoulder which seems to be getting worse.

The doctor is starting him on agressive chemo soon (in a week or so) for about 3-4 months and says that he WILL preform surgery if tumor will shrink. I think he said it just to give us hope.

My boyfriend is one of the best people I know. A wonderful father to his kids and mine, so patient with me, so good and caring. I can not believe I will be losing him soon. I don't know what to expect? when will he start getting worse and worse? How do I deal with this in my home with my small kids?

Another problem I have is that I have been doing extensive research on the internet and I KNOW what will happen, I know there's no cure, I know he will die....a horrible death. Everyone around me is being kind of naive (him, his family, his kids) , and it's hard for me to "lie" and pretend everything will be okay.

I am just so desparate. Thanks for listening,

Kaya

Kaya5671 · New User Joined: 24 Sep 2008 Posts: 7 Location: ISRAEL

His diagnosis:

4 cm tumor in right lung with nodules around it
many Lymph nodes involved including some on the left side

PET scan was clear
CT head scan is clear

Dr. puts him at stage IIIB

brainman · Posted: Sat Sep 27, 2008 2:04 am Post subject: Re: New member- unfortunately

Kaya, I am so sorry about your boyfriend's lung cancer. It breaks my heart when small kids are involved. My children were also very young when I was first diagnosed. My son, now 18, was only 3 at that time. I was totally open with all of them. I even have pictures of my son sitting with me on my hospital bed. Kids are much more resilient than we adults. Of course, my older daughters could understand more so I told them more. Nevertheless, all of them knew that I was very sick and needed their love.

Mind you, I too thought that I would die soon but here I am, almost 16 years later. Your boyfriend will probably not live as long as I have. However, since it is a stage III, he very well may live for several months if not years. I know this is not a great consolation since I am sure you expected to grow old together.

You, your boyfriend, and all of your children are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

dano · Posted: Sat Sep 27, 2008 11:05 am Post subject: Re: New member- unfortunately

Welcome Kaya;
Though this is a place you don't want to be, it is a new home for me too. You don't get any medical treatment but you do get a shot of encouragement from those that have fought the battle and are still fighting it. Everybody has there own fight which is always a little different from the next one, there are almost no two cases alike yet many similarities. This why you always wonder if the doc knows what he is doing, because they too are left scratching there heads at times. So when you get a second opinion, sometimes you'll end up with several sets of docs wondering whats best. I hope they can find out soon what the reason for your boy friends shoulder pain. As for the cough, need to find out if the cancer is causing it or blood clots due to cancer. I had a cough for over six months, then cancer was diagnosed, then a blood clot in my leg was diagnosed, then they found them in my lungs. When they treated me for the clots, my cough went away. Yet no body saw the clots in my lungs for over 6 months with all the CT's and x-rays. You have to push your doctors a little to get good care but you have to do it in a way the you are building a relationship with them at the same time, it is a bit of a dance. But ultimately you want the best care for your boy friend, and as you come in and share what is going on, we will learn his name and share your experiences as the journey continues. God bless you and your family.
Dan
_________________
54 year old male in Hawaii
Diagnosed Nov. 9,2007 with NSCLC IV
with Mets to the lymphs and brain
Had full brain radiation treatment in Jan 08
Currently on chemo treatments every 3 weeks
with Alimta
and taking Lovenox for blood clots
Now back to work full time
http://cancerforums.net/viewtopic.php?t=9993

onecoyote · Experienced user Joined: 15 Jul 2008 Posts: 66

Hi Kaya,
I am so sorry for your partner's diagnosis, I know how hard that news can be. I did alot of research when my husband was diagnosed with squamous cell carcinoma of his right lung. At the time he was having shoulder pain and I came across information about Pancoast Syndrome. Pancoast tumors originate at the top margin of the lung. They form an abnormal patch of tissue over the lung apex and principally involve the chest wall structures rather than the underlying lung tissue.
My husband had his entire right lung removed and later we found out his shoulder pain was unrelated. Quite possibly your partner has a Pancoast tumor, you could bring this up when you see the doctor.
I wish you both the best and that the tumor shrinks enough for surgical intervention.
Hugs of strength,
Onecoyote
_________________
Husband Danny, age 65,
diagnosed June 6, 2008,
downstaged to 2A squamous cell NSCLC.
Pneumonectomy performed on Sept. 4, 2008.

"Women are like teabags. We don't know our true strength until we are in hot water!"
Eleanor Roosevelt

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1265

Welcome to this community Kaya,

I'm so sorry that you have to be here. It's a great place to ask questions, get support from others who understand, and to vent your fears. Your boyfriend is so young and so are your kids -- that always upsets me the most.

On the upside, his cancer is confined to his chest and have hope that with aggressive chemo treatment he can hold this in check for a long time. His tumor burden isn't too heavy, so that is also a plus.

Please have hope for some good time with him. If he responds well, he could be placed on something like Tarceva and if he shows a response to that, the sky is the limit. Even without responding to Tarceva, my husband lived 2 1/2 years. I know that's small compensation to you right now while you are still in shock from the diagnosis, but there are many people surviving late stage NSCLC for 2-3+ years now. The fact that they even mentioned surgery as a throw-away means they are going at this with an open view to all possibilities. That's great -- they are thinking outside of the box.

Please keep in touch and let us know how he progresses. I've known many people who have that shoulder pain as a symptom. It all depends on where the tumor is located as to whether it causes pain like this or not. Hopefully this symptom will disappear once the cancer starts responding to the chemo.

Best wishes and prayers.

Hugs,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

Kaya5671 · New User Joined: 24 Sep 2008 Posts: 7 Location: ISRAEL

Thank you so much all for your support. I don't know if I mentioned that I live in Israel, in a beautiful port town, 10 minuted from the mediterranean. It is beautiful here.

I want to post everyday but just can't find the time between work, my kids, his kids and his situation. He does not need constant care at all, some shoulder pain which is still managed with 2 advils. He takes about 4 advils a day but I know that will change. He is not sleeping well at all, trouble falling asleep and waking up early. I don't think it's so much the cancer as just worries and crazy thoughts.

We met the oncologist on Monday and she did not look too optimistic giving him zero chances for operation and basically doing chemo only and some radiation.

My question to you all, he is starting carbo/taxol regimen once a week. He will start in about a week or so. Anything special I should know about, what to prepare at home, should I buy anything? what are the main side effects? just anything special I might need before this starts.

Thanks and I love you all,
Kaya

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