Aloha from Paradise :D

[dano]

My Name is Dan and this is my story.
I moved here to Hawaii in 2001 and have been enjoying paradise.
In July 07' I got tired again of my persistent coughing and went to see a doctor, who referred me to specialist to find the problem. after taking antibiotics with no help, had to do a lab test on my spit, complications of a trip and getting the test down right took me into October, and more chest xrays, and like my previous tests, came back with something cloudy in my left lung, but no worries it isn't cancer. This I heard this already from another doctor over 2 years prior, so no worries. The main reason for no worries is that my family has been pretty much cancer free and I am a non-smoker. Also I am an electrician, and electricians are known for getting stuff in their lungs from work. the main thought is that I could have sarcoidosis. Finally the doctors had my lungs biopsied at the hospital and on Nov. 9th while I was working and driving from one job to the next, I got a call from the doctor saying the test results came back negative ( found out later this was about sarcoidosis only though he didn't say) and we will need a bigger samp
ling of a biopsy. An hour later he called back and had the final biopsy report came back positive for Lung Cancer. This really rocked my world you can believe. After further test it was found that the cancer was shown to be in my lymph system and in my brain ( 6 lesions ). My cough all the while still getting worse, I can't sleep in bed because of the coughing gets worse laying down, so I sleep in a Lazy Boy. Instead of starting radiation on my brain, I wanted Chemo to help my lungs out, if I can't breath, what good is a brain? So we started chemo and went in once a week for three weeks. Then I noticed that my left leg was swelling and I was told that swelling was normal from the meds, I said no, just my left leg, the Oncologist thought again and sent me in to be tested. They found a large DVT (blood clot) near my knee and I was hospitalized. while there they scanned my chest again and found blood clots in my lungs, an associate doctor to my oncologist put me Lovenox. He said because Coumadin kills cows, I figured there was a story on that and there is. After only 3-4 days on the blood thinners I started breathing better, and each day I just got better. Soon I was sleeping in bed again and eating, sense Nov. I had lost over 40 lbs. dropping from 260 lbs. Loosing that much weight is not a good sign for cancer survivability, but it sure felt good. After 3 nights in the hospital, my lymph nodes were better and the docs decided to get me going on Radiation, I elected to go full brain style, but after the MRI they found 4 more lesions and it was not really an option. The radiation went easy, it will be interesting to see what the radiation will cause in the next couple years, that is scary but the fast growing tumors in my brain I thought was scarier yet, so on ward. After the 10 days worth of radiation things were fine, and I started a new round of chemo treatments on Alimta. This was quicker and better to the taste than the previous treatment, My lymph nodes that were huge and sore had calmed down now. Just after my chemo treatment in February, I went for a short trip to Seattle Washington for a second opinion, I heard this was a good Idea, and the Seattle Cancer Care Clinic and the University of Washington was very highly rated. The information I got was reassuring to know I was getting good treatment very much like I would have gotten from My area at Queens Cancer Center, they may experiment more down the road but otherwise I was getting good treatment, and because I didn't want to leave my wife and spend extra money I don't have, I went back to paradise. I currently am feeling pretty good, having some problems with my ears, no real cure for it right now though things may change in time. By chance I found another INT to look at my ears and he has started me on some treatments that may help, so far is seems to, but I'm still close to a 10-15% hearing loss. I early March I made an attempt to go back to work, I lasted about 3 weeks, it was for financial reasons, but I could not stay at it, too weak and shaky. But I was got approved for full disability which was a big help. Thinking about going back to work again in September, I feel much better than before and all the latest tests are looking very positive. But again this is still a financial need. Insurance doesn't last forever. And the costs of my Chemo and my Lovenox shots! $7,000-8,000 a month. I'm looking at Coumadin for a blood thinner, it is a lot cheaper, but is it worth the risk, not that Lovenox is risk free. I'm getting all this time off, but having a hard time getting a chance to tap into paradise, But I am feeling better, and work is around the corner, gas is $4.50 a gal., Oh well there is always the beach! Feel free to email me if there are any questions, Mahalo.
God Bless
Dan

Currently on chemo every four weeks and feelin fine
Have NSCLC IV[/img]
_________________
55 year old male, Diagnosed Nov. 9,2007 with NSCLC IV with Mets to the lymphs and brain
Had full brain radiation treatment in Jan 08 treatments now every 4 weeks with Alimta, taking Lovenox for blood clots, Now working full time
http://cancerforums.net/viewtopic.php?t=9993

[dano]

Forgot to mention little things like I am a male 53 years of age, birth date in Sept. my memory was never that good but sense the cancer, I have a lot less care about some things and a forget more often and quicker. I'm sure it was those brain tumors! lol
Dan
_________________
55 year old male, Diagnosed Nov. 9,2007 with NSCLC IV with Mets to the lymphs and brain
Had full brain radiation treatment in Jan 08 treatments now every 4 weeks with Alimta, taking Lovenox for blood clots, Now working full time
http://cancerforums.net/viewtopic.php?t=9993

[ksplat]

Aloha Dan!

I am very happy to welcome you to our forum. Your post exudes personality, passion, positivity & humour, we would be most pleased to have a member with your qualities on our message board here!

Sorry to hear about your diagnosis & significant other problems, namely blood clots. So glad to hear they have almost cleared now. What happens with the veins that have rerouted? Do you have much pain in this area?

You will find me lurking mainly on the Brain Tumour thread as my Bro has a brain tumour. I am not too familiar with Lung Cancer. I can assure you this thread has a very active & supportive member base. It's only a matter of time before you have the "red carpet" rolled out here!

All the best to you.
Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

[dano]

Thank you Angie for the welcome;
As far as the blood clot is concerned I believe it is mostly gone however the damage done currently leaves my left leg in discomfort most of the time. Discomfort is manageable pain . Sometimes it feels swollen, sometimes it is swollen. I went off blood thinners because of my Cardiologist wanted to do a test, I ended up off Lovenox for three weeks and things were pretty normal, meaning I still had mild discomfort, for which I was amazed really. I was finally given direction to start using it again and I stayed off for another week testing my self. Maybe I'm the only one but, I do question every thing I take and I want to know why. I went back to the once a day dose as my Oncologist said I could because I am afraid having more clots, but after a day of a lot of sitting in front of the computer my leg started hurting more and I went back to the twice a day injections. I failed to mention that another reason for the extension to the break of taking blood thinners was I'm tired of giving my self injections! My stomach was a mess of bruises and bumps and it was great to get the break and have things heal. Earlier taking shots was not so bad, but I'm still slowly loosing weight and have less and less fat on my stomach which has become much more sensitive to the shots. But as I have read up on Lovenox, seams that I need to have twice a day shots if I'm going to be on it, sense Lovenox only works for 12 hours. One of the things I noticed with the changes in my use of it was my blood pressure, the Doc says no relationship there, But before I started on it my BP was around 120/78 and after being on it for a few weeks at twice a days it was down to 97/63. And I felt weaker over all. After being off it for a while started get BP readings of 108-120/ 76.

Sorry to hear about your brother, hope things are going well there. I'm sure that his situation must have been pretty bad to go in for that. As I mentioned I was treated for 10 lesions, the largest was 10mm, but most were 2-3 mm and had not had and side effects as yet. But the one tumor grew from 6 to 10mm in 2 months without treatment. The radiation though appears to have stopped it for now.
Thanks again Angie, keep the Faith.
God Bless
Dan
_________________
55 year old male, Diagnosed Nov. 9,2007 with NSCLC IV with Mets to the lymphs and brain
Had full brain radiation treatment in Jan 08 treatments now every 4 weeks with Alimta, taking Lovenox for blood clots, Now working full time
http://cancerforums.net/viewtopic.php?t=9993

[EFP]

Hi Dan. Welcome to the club no one wants to join.

I've been on Lovenox since January and I know just what you mean -- our poor bellies! However, I did want to make one point -- producing blood clots is a symptom of lung cancer (that I think affects just 20% of us) and it's presumably going to last as a threat as long as we do. And, while clots in the legs (where most of them begin, apparently) can be very painful, the big danger is if they get to the lungs and become pulmonary embolisms (PEs) and can cause instant death. I suspect you had some PEs since it affected your breathing. One thing you might inquire about is having a vena cava filter installed -- it's a permanent filter in the main vein from the legs to the lungs and is supposed to trap any blood clots making their way northward. It's not instead of the Lovenox but just an added safeguard. (You may already have one -- mine was installed within an hour of my being hospitalized, even before the full diagnosis.) Anyway, if this is all old news to you, sorry. I just wanted to make sure you were clear about the importance of Lovenox before you decided to take another break.

Lots of luck.

Ellen
_________________
65-yr-old woman, dx 12/07 at age 63 with Stage 4 NSCLC (adenocarcinoma), with mets to lymph nodes and bones (pelvis, L3). Only symptoms are blood clots, for which am taking Lovenox, and some pain from the bone mets, for which I had radiation to the pelvis and spine and am taking Zometa. Have opted to do no chemo or chest radiation.

[dano]

Thanks Ellen;
I've heard of the filter however I had thought it was just for during surgery and not permanently installed, interesting news. I have been a little taken back with the over all lack of concern the Oncologists have had towards my clots, it's kinda like, oh well, you pass a clot to your lungs, if you feel one, go to the emergency room, no big deal. lol. I say that because the words [b]blood[/b] [b]clot [/b]is never brought up during my regular visits.
I look forward to getting to know you as a fellow member of the club.
You are opting out of Chemo, why is that? Are you using a natural method?
don't know about you, but my refer is full of good for you cure alls that friends have given me without being able to say no thank you. I have just gotten numb to most natural methods. However I'm wondering about using Barley Green that a friend wants me to take, he had colon cancer and used BG to cure him self.
Good luck on the Radiation Treatments, mine went well and fast. Not sure how long the whole targeting sequence will take you with the spine and pelvis . Keep me posted.
God Bless
Dan
_________________
55 year old male, Diagnosed Nov. 9,2007 with NSCLC IV with Mets to the lymphs and brain
Had full brain radiation treatment in Jan 08 treatments now every 4 weeks with Alimta, taking Lovenox for blood clots, Now working full time
http://cancerforums.net/viewtopic.php?t=9993

[brainman]

Hi dano. I am very sorry about your Lung Cancer. The people who usually reply to this forum are very knowledgeable and supportive so you are in good hands .

I am 53 also... 54 in August .

I read your message carefully but did not see where you told its cell type or grouping (Small Cell SCLC or Non-Small Cell NSCLC). If you have that information, you will have a better idea about treatment options and prognosis. Most of the time, lung cancer (any type) is not an immediate "death sentence". Actually, the blood clots are more of a danger to you at this point. Keep working with your medical team to minimize that danger.

You are in my thoughts and prayers.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

[dano]

Hi Brainman;
I turn 54 on Sept 5, so you are much older that I, lol.
I thought my signature included most of my status, I am NSCLC IV, andenocarsanoma, with mets to Lymph nodes and brain. My brain looks pretty good after the radiation, I feel fortunate that the mets were small. There are a lot of funny words they use to describe my condition, it might as well have been Greek to me, I had no real understanding of my condition, like most people like us, we just want to be told it will be well in the morning. Like when will be over, the look in the doctors faces tell a lot, because they can't find the words to tell us. But I like words like bibasilar interstitial infiltrates or bilateral hilar and mediastinal lymphadenopathy and extensive interstitial lung disease. Say what? I did not go into research mode after being diagnosed, I was in survival mode. I tried to read between the lines the best I could, for frank talk was not found, and I did not push for it. I have learned a lot from this forum in the short time I've been here. I don't know what the future has in store, but like my initial feelings, God can take me now if he wants, if not then I have more work He wants to have done. Like working on my families hearts doing things that I though could never happen. I just hope I can hear and obey, and not have my head up my rectum with personal issues. I have felt so self centered at times. But all this is growth, changing day by day as I live the experience. I've got things lined up with the docs, and I'm heading to Rochester, New York to join my Dad is taking me to his family reunion in August. This is special, getting time with my Dad and his family. I will treasure it all as gold in my life. When I come back I'll be getting ready to head back to work as an electrician. I need to keep the money and insurance coming in. I tried in March to go back to work, but could not handle it, got shaky and weak. I feel much better now and think I can do the job. I some how re-injured my left rotator cuff, which makes working more difficult, but I'll live through it. So I hope I've shared more for you Brainman to understand my situation better. Thank you for all your posts.

God Bless
Dan
_________________
55 year old male, Diagnosed Nov. 9,2007 with NSCLC IV with Mets to the lymphs and brain
Had full brain radiation treatment in Jan 08 treatments now every 4 weeks with Alimta, taking Lovenox for blood clots, Now working full time
http://cancerforums.net/viewtopic.php?t=9993

[Zeak]

Holy Moly, you got hit with a lot. I takes a strong person to hang in there to go what you are going through. Must be all those shocks you got being an electrician!! I can't imagine what most are experiencing as I don't have cancer, but my Dad has lung cancer and mets to his brain also.

He's 74 and opted for no treatment and let nature take is course. It's tough watching him degrade every week. His balance, gait and confusion get worse almost daily. The good thing is he's not in pain. He also says things that crack us up! He was trying to ask his caregiver what her husband does for a living and it came out "so how do you do your husband".

Write on here everyday. I seems to help. So, go to the beach, surf, check out all the wahine's, and book'em Dano!

[dano]

Hi Zeak;
Sorry to hear about your situation with your Dad, that has to be tough. It is easier I think to be sick than to care for a person that you love that does not wish to fight, and that is their elective, but it is hard to go through.
God Bless you Zeak and your father.
Dan
_________________
55 year old male, Diagnosed Nov. 9,2007 with NSCLC IV with Mets to the lymphs and brain
Had full brain radiation treatment in Jan 08 treatments now every 4 weeks with Alimta, taking Lovenox for blood clots, Now working full time
http://cancerforums.net/viewtopic.php?t=9993

[EFP]

Hi Dan.

Interesting that they were so calm about your blood clots. With me they freaked out -- insisted on *wheeling* me from the CT-scan room to Admissions, expecting me to drop dead at any moment. Never mind that I'd been walking around with them for months and had in fact driven to the hospital for that dr's appt, lol.

CAUTION: If anyone is averse to statistics, please stop reading here.

[quote="dano"]You are opting out of Chemo, why is that? Are you using a natural method?
don't know about you, but my refer is full of good for you cure alls that friends have given me without being able to say no thank you. I have just gotten numb to most natural methods. However I'm wondering about using Barley Green that a friend wants me to take, he had colon cancer and used BG to cure him self.
Dan[/quote]

I guess you could call what I'm doing a 'natural method', lol -- I'm just letting the disease run its course while I get my affairs in order and indulge myself (I've gained 12 lbs since dx, due to that self-indulgence ). I haven't had a sick day since dx in December. So, given that the avg survival is 8 months from dx to death *with* treatment -- and generally one feels lousy for much of that time due to the treatment, I figure I'm already way ahead. Yes, I fully expect to decline in the (near) future but treatment wouldn't prevent that (tho it might of course give me some more time feeling lousy). (And, yes, I am currently undergoing 14 radiation treatments to the pelvis and spine to prevent fractures. So far, no bad side effects.)

PLEASE NOTE: I'm not advocating this 'natural' approach! It's just the route that *I* am most comfortable with.

Good luck and hang in there.

Ellen
_________________
65-yr-old woman, dx 12/07 at age 63 with Stage 4 NSCLC (adenocarcinoma), with mets to lymph nodes and bones (pelvis, L3). Only symptoms are blood clots, for which am taking Lovenox, and some pain from the bone mets, for which I had radiation to the pelvis and spine and am taking Zometa. Have opted to do no chemo or chest radiation.

[brainman]

Dano, my survival mode IS the research mode. Is soon as I could walk, I went down to the medical library of the hospital where I worked and started to read anything and every thing about brain cancers and cancers in general. It did help that I have a strong background in science and in Greek. The "big words" you used come rolling off of my tongue... sometimes even better than English . Even words that I really do not know specifically what they mean I can break down into the Greek or Latin part and come up with a close idea.

Well, here I am running on and on.

My birthday is August 10 so I am way older that you
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

[koikkeril]

My Almighty
Hi Dano
Some hard time you have been having.. I am sure what decisions you make for your treatment will be the correct one.
I can see you are quite positive to accept which either way the disease goes, which is good in the sense anxiety and fear brings more health problems..But you are a christian so keep your faith and be positive with the attack, you never know what the Lord may bring and I hope plenty.
God Bless you I will keep you in my pray as you battle forward, Koik
_________________
Husband diagnosed with stage 1V NSCLC Febuary 2007.....Lost his battle August 27th 2008 but lives on in my heart.

[pbj11]

Hi Dano ---

Whew! You've been on a merry-go-round there pal! I hope you get to feeling better soon. Glad you realized that a Stage IV entitles you to disability, but know you are really trying to forge ahead and get back to work.

Not the researcher type huh? LOL Patients come in all different types -- my husband just wanted to know the basics -- good or bad, but I delved into all the intricacies of the disease right from the start. We had hoped for TB or Sarcoid too! When they mention interstitial infiltrates, I don't think it's the actual cancer. I have those and don't have lc. It may mean underlying emphysema or something. We found out my husband had that when all the other diagnostic tests were going on and on and on. LOL

You sound like you have a great attitude and that will carry you far. I hope the breathing has eased for you -- that's a real bite in the rear end to have breathing problems.

Were you on cisplatin at any time? You mention hearing problems and I know this drug can cause that. What are they telling you? (Maybe I missed it.)

I noticed in another post that you were on Lorazepam. This is the generic for Ativan, an anti-anxiety med. I've seen them give this for nausea, but never really got the connection. No wonder you had a rough go of getting off of it! My husband did fine on the generic compazine that you're on now too.

Good luck and welcome to this community. Lots of support to be had here.

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

[dano]

Hi Ellen my friend;

This has all become an adventure of of sorts, and I love a good adventure.
I guess I had been passing clots into my lungs for quite some time, the fact that at the time my worst condition was the cough, and that soon went away opening up a more positive future in my sight. I don't think I have been through much, just the aftermath of the kick in the face when the doc who has told me, "it's not cancer" called and told me that my biopsy was inconclusive, then called back to tell me the biopsy report said I had cancer.
That was the hardest to get over. But I'm feeling better overall right now. Had chemo Tues. starting to feel that now, also the side effects of neulasta smacking me in the back, these are all temporary effects and I just try to blow through them.
But you Ellen, you concern me, I can tell what a great person you are, and I hope the choice you made works for you as far as letting it run it's coarse. I wish to keep you as a friend for time to come.
I am a few days away from going to Rochester, New York and meet up with my Dad (lives in Oregon) for his families re-union next Saturday. I've got all my doctors supporting my trip so that is cool. Spending time with my Dad is as precious as gold to me, he has learned that I want to hear his story and has been opening up to me.
Ellen thanks for what you have shared and I hope you can share more.
God Bless
Dan
_________________
55 year old male, Diagnosed Nov. 9,2007 with NSCLC IV with Mets to the lymphs and brain
Had full brain radiation treatment in Jan 08 treatments now every 4 weeks with Alimta, taking Lovenox for blood clots, Now working full time
http://cancerforums.net/viewtopic.php?t=9993