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HulaMom
Senior User
Joined: 06 Jan 2009
Posts: 206
Location: Makaha, Hi
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 Posted: Fri Jan 23, 2009 2:02 am Post subject: HulaMom update |
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I FINALLY got cleared to start treatment. First thing is to start on Tarceva. Get this, the doc doesn't think it will work so I said to just do chemo. He said it has same chance of working. Not good. BUT, I won't stop fighting this nasty beast until I can't fight anymore. The liver tumor is a fast growing one - says it could double in size every 2-3 months! Yikes. So we will start on Tarceva, scan in 2 months and if no shrinking, switch to chemo. Sheez. And since my veins are fried from first chemo, we are scheduling with a surgeon to put a port-a-cath in, something I really should have done at the start. But it's never too late! So the news is good and not so good and prayers are welcome, of course. Wouldn't tomorrow be really nice if we woke up to find a cancer cure? 
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47 YOA female. NSCLC IV Squamous cell. dx 7/07. Radiation, chemo (carboplatin/Taxotere). Cancer free 3/08! Cancer mets to liver 12/08. Started Tarceva 1/26/09-4/10/09, liver tumor tripled in size. Started Alimta. Down to 84 pounds! Stopped Alimta and started Gemzar on 5/2. Stopped chemo went into HospiceJuly 24 2009, with prognosis of 3, maybe 4 months left. |
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dano
Moderator
Joined: 19 Jul 2008
Posts: 506
Location: Oahu, Hawaii
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| Posted: Fri Jan 23, 2009 10:47 am Post subject: Re: HulaMom update |
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My Prayers are with you Hulamom!
I wish the doctors would be a little more positive than they sound.
I guess I need to bake some more bread for you.
God Bless
Dan
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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 |
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Cherl
Regular
Joined: 13 Jan 2009
Posts: 31
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| Posted: Sat Jan 24, 2009 12:49 am Post subject: Re: HulaMom update |
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[quote="HulaMom"]I FINALLY got cleared to start treatment. First thing is to start on Tarceva. Get this, the doc doesn't think it will work so I said to just do chemo. He said it has same chance of working. Not good. BUT, I won't stop fighting this nasty beast until I can't fight anymore. The liver tumor is a fast growing one - says it could double in size every 2-3 months! Yikes. So we will start on Tarceva, scan in 2 months and if no shrinking, switch to chemo. Sheez. And since my veins are fried from first chemo, we are scheduling with a surgeon to put a port-a-cath in, something I really should have done at the start. But it's never too late! So the news is good and not so good and prayers are welcome, of course. Wouldn't tomorrow be really nice if we woke up to find a cancer cure? [/quote]
HulaMom, I am praying for you, and your strength is inspiring, I'm picking you to win this fight. You go girl!  |
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HulaMom
Senior User
Joined: 06 Jan 2009
Posts: 206
Location: Makaha, Hi
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| Posted: Sat Jan 24, 2009 1:37 am Post subject: Re: HulaMom update |
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Thanks and hugs for your support guys! The Tarceva comes in Monday via courier (weird, huh). So I will start finding out soon after if I get the nasty side effects. Hoping I don't get any lung troubles which can happen but I don't wanna worry about what hasn't happened. LOL! There's enough to worry about as it is. Again, thanks guys.
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47 YOA female. NSCLC IV Squamous cell. dx 7/07. Radiation, chemo (carboplatin/Taxotere). Cancer free 3/08! Cancer mets to liver 12/08. Started Tarceva 1/26/09-4/10/09, liver tumor tripled in size. Started Alimta. Down to 84 pounds! Stopped Alimta and started Gemzar on 5/2. Stopped chemo went into HospiceJuly 24 2009, with prognosis of 3, maybe 4 months left. |
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pbj11
Site Admin
Joined: 12 May 2007
Posts: 2403
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| Posted: Sat Jan 24, 2009 8:51 am Post subject: Re: HulaMom update |
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Hi,
Glad to hear you are cleared to finally enter the ring again with another treatment. It will be a nice difference to just take one pill every day. I'm hoping for a big reaction ( -- you know) , but am glad he'll scan you after 2 months. I wouldn't worry about Tarceva and lung function as much as I would about Alimta. Remember, my husband had the crappy lung thing too and he had some of his best times while on Tarceva. (It didn't work, but he felt good!!  ) I'm hoping and praying for some real success for you.
Second lines, third lines, etc., can be very effective. Heck, my husband's fourth line was extremely successful, so the docs can only make generalized comments about whether the chemo will work or not, based on stats. You know how we feel here about statistics!  We laugh in their face!
You go girl! Look for signs about 8-10 days out.
Hugs and God bless,
PBJ
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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 |
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HulaMom
Senior User
Joined: 06 Jan 2009
Posts: 206
Location: Makaha, Hi
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| Posted: Sat Jan 24, 2009 4:39 pm Post subject: Re: HulaMom update |
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Thanks PBJ! I hope for the rash! Already prepared. I think the lungs are why he didn't go with Alimta. Got a vitamin B-12 shot and he put me on folic acid. Then my infection got worse and he had me stop taking folic acid. Maybe he has some other ideas if Tarceva doesn't work. And yeah, about statistics. They can be twisted either way, really. And look what happened the first time - they didn't hold hope but for unknown reasons MONTHS after last chemo, tumors disappeared. Talk about a shocked Oncologist! I know I looked like death the first time I met him but I am normally too skin so imagine going from 114 to 69! Can see why he said pallative care at the start. My imaginary Beast fightets are ready with grenade and pineapple launchers!
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47 YOA female. NSCLC IV Squamous cell. dx 7/07. Radiation, chemo (carboplatin/Taxotere). Cancer free 3/08! Cancer mets to liver 12/08. Started Tarceva 1/26/09-4/10/09, liver tumor tripled in size. Started Alimta. Down to 84 pounds! Stopped Alimta and started Gemzar on 5/2. Stopped chemo went into HospiceJuly 24 2009, with prognosis of 3, maybe 4 months left. |
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Gillette
Moderator
Joined: 15 Oct 2008
Posts: 353
Location: Old Orchard Beach, Maine
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| Posted: Sun Jan 25, 2009 11:17 pm Post subject: Hula mom update |
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 Hi, Hulamom, I 've been reading yours' for a while, and you are something. God Bless you, and with Dano's bread, how can you go wrong? Good luck to you on this beastly road of uneven and uncertain nasties. This new normal is a world none would conciously choose, and once here- I cannot imagine my life without all of you I have found out there.
 I am jealous of your location, though- it was 12 below zero last eve.
May your treatments be kind and mild, and your winds warm.
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Kathy: still loving Ben, as he rests with God. |
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HulaMom
Senior User
Joined: 06 Jan 2009
Posts: 206
Location: Makaha, Hi
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| Posted: Fri Jan 30, 2009 1:15 am Post subject: For those thinking about Tarceva... |
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Well, the Tarceva came Monday via courier (aren't I special!) so of course I started taking it Monday. Nothing really except for a half hour of queasiness. Suddenly today (before pill #4) I get really dry skin on my face and back. Thank God for Bag Balm! It's really itchy too. But compared to the chemo at the start, this ain't squat! Too soon to know if it is working. They say not to smoke but I only smoke 3 smokes a day, can't imagine that being an issue. I know I should just quit but dammit, I actually ENJOY those 3 and since I am on borrowed time anyway, may as well enjoy them. More than 3 and my lungs get really crappy (wheezing, etc). Anyway, in case you are sitting on the fence about Tarceva, so far my own experience is ok. Hey, one can always stop a treatment if it gets too ugly....
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47 YOA female. NSCLC IV Squamous cell. dx 7/07. Radiation, chemo (carboplatin/Taxotere). Cancer free 3/08! Cancer mets to liver 12/08. Started Tarceva 1/26/09-4/10/09, liver tumor tripled in size. Started Alimta. Down to 84 pounds! Stopped Alimta and started Gemzar on 5/2. Stopped chemo went into HospiceJuly 24 2009, with prognosis of 3, maybe 4 months left. |
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pbj11
Site Admin
Joined: 12 May 2007
Posts: 2403
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| Posted: Fri Jan 30, 2009 9:37 am Post subject: Re: HulaMom update |
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Hey! Dry, itchy skin was one of the reactions my husband had too! It was around his lower legs and at first I was convinced that our pets had brought some flea-friends in with them. Turned out to be the Tarceva, because it spread to his upper back.
Keep going!!
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 |
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mcw
Experienced user
Joined: 25 Jan 2009
Posts: 51
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| Posted: Fri Jan 30, 2009 3:30 pm Post subject: Re: HulaMom update |
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Hey Hulamom, if anyone beats this thing it will be you! Apart from smoking, is there anything else you're not allowed to do?
Not a single doctor has told me to stop smoking. It's more social these days, but it makes me feel "normal." Also thought I could drink and drown my sorrows with a clear conscience, but I can't swallow more than a few sips. Bummer!
Thinking of you--please keep us posted! |
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HulaMom
Senior User
Joined: 06 Jan 2009
Posts: 206
Location: Makaha, Hi
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| Posted: Fri Jan 30, 2009 4:22 pm Post subject: Re: HulaMom update |
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My Oncologist told me at the start if I could stop smoking, quality of life would be better. So I quit for a month and a half. To a degree it was better, at least lung-wise. But my adult sons smoke and it just kept tormenting me seeing a pack, or a smoke. Or worse, smelling it drift my way when the wind blew. When I say torment, I mean that. But I had quit using a pill called Chantix. My main problem was headache and nausea using it so I stopped. And almost immediately started craving the damn things. At this point I feel like if I wanna few, then I'm gonna have a few! Oh, we can add one more side effect from Tarceva. The trots. Nothing serious. Just annoying. With Tarceva they tell you to stay away from grapefruit and grapefruit juice - something hard for me since I usually eat a grapefruit as a mid-day snack. Love that sweet/sour taste! It's ok. As soon as I am done with Tarceva, hubby will go buy me a big bag of those bad boy grapefruits!
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47 YOA female. NSCLC IV Squamous cell. dx 7/07. Radiation, chemo (carboplatin/Taxotere). Cancer free 3/08! Cancer mets to liver 12/08. Started Tarceva 1/26/09-4/10/09, liver tumor tripled in size. Started Alimta. Down to 84 pounds! Stopped Alimta and started Gemzar on 5/2. Stopped chemo went into HospiceJuly 24 2009, with prognosis of 3, maybe 4 months left. |
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mcw
Experienced user
Joined: 25 Jan 2009
Posts: 51
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| Posted: Fri Jan 30, 2009 4:48 pm Post subject: Re: HulaMom update |
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That's the trouble with all the cures! The trots usually lead to weight loss, which we're told to avoid. I gather you're naturally thin, like me, which makes it harder.
My pulmonologist told me that smoking doesn't make a difference at this point, but she keeps asking me if i still do. Turns out, smokers show high 02 saturation. False positive?
Grapefruit really gets a bad rap, you're not allowed to take it with any medication. The most unpleasant symptom I had (wild atrial fibrillation) led to having to take heart pills--the heart itself is fine, this comes from the diseased lung. Anything but grapefruit is OK.
Hang in there! |
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HulaMom
Senior User
Joined: 06 Jan 2009
Posts: 206
Location: Makaha, Hi
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| Posted: Fri Jan 30, 2009 4:57 pm Post subject: Re: HulaMom update |
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The way I see this is the beast is ultimately gonna win. But until that day comes, I live with my creature comforts. People who don't understand it won't understand. If I really thought this beast was beatable, I wouldn't have started smoking after I quit. The beast will be battle-weary when I am done with it and I deserve a few smokes each day! LOL
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47 YOA female. NSCLC IV Squamous cell. dx 7/07. Radiation, chemo (carboplatin/Taxotere). Cancer free 3/08! Cancer mets to liver 12/08. Started Tarceva 1/26/09-4/10/09, liver tumor tripled in size. Started Alimta. Down to 84 pounds! Stopped Alimta and started Gemzar on 5/2. Stopped chemo went into HospiceJuly 24 2009, with prognosis of 3, maybe 4 months left. |
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HulaMom
Senior User
Joined: 06 Jan 2009
Posts: 206
Location: Makaha, Hi
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| Posted: Thu Feb 05, 2009 6:24 pm Post subject: Re: HulaMom update |
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Moving foward - about time! The only lingering effects of Tarceva is dry skin and acne of the face. The trots lasted 2 days and was mild. Overall, not bad. <br>We finally got an appointment with the surgeon and I get my port-a-cath (actually PowerPort) Tuesday morning, the 10th. Will update on that then. I should have gotten the port at the start but for some stupid reason I opted not to. For those who don't know, the port is an implant per se, and they use it for chemo, taking blood samples,etc. Basically it keeps you from suffering multiple needle sticks and blown IV's. So, next update will be post-surgical on Tuesday.
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47 YOA female. NSCLC IV Squamous cell. dx 7/07. Radiation, chemo (carboplatin/Taxotere). Cancer free 3/08! Cancer mets to liver 12/08. Started Tarceva 1/26/09-4/10/09, liver tumor tripled in size. Started Alimta. Down to 84 pounds! Stopped Alimta and started Gemzar on 5/2. Stopped chemo went into HospiceJuly 24 2009, with prognosis of 3, maybe 4 months left. |
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zebra
Regular
Joined: 23 Dec 2008
Posts: 20
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| Posted: Thu Feb 05, 2009 6:44 pm Post subject: Re: HulaMom update |
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Thanks for the info on the Tarceva. I will be following your progress and hoping for the best!
Stephanie |
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