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brainman
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Joined: 13 Oct 2005
Posts: 5974
Location: Tennessee
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LizNDale
Senior User
Joined: 16 May 2008
Posts: 150
Location: River Falls, WI
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 Posted: Tue Jun 17, 2008 12:57 am Post subject: Did not start wb |
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Mom didn't start the wb rad today, they did the set up, mask etc, and will start it tomorrow.
She wasn't as good today. She endured the 3 hours at the radiologists just fine, and feels very good about the drs and the people there. She doesn't think the wb process itself will bother her (the process itself, not the treatment and possible side effects). We're so glad about that.
She was extremely tired today, had a headache last night - she is not a headache prone person. She's only on 4 mg/day of the steroid, as it was keeping her awake at night. We're going to to talk to dr about tkaing 4 in am and another 4 around noon.
She was more "out of it" today - but she is very stressed out about her sister coming. She loves her sister very much, but they have a rather stressfull relationship especially when they're actually together instead of long distance. She spelled out some ground rules to her, and we assured mom we'd play the bad guy for her if needed. It's another dance!
I'm tired and can't sleep. I'm having not so great images in my head.
One thing that kinda makes me angry is that she hasn't started the wb yet. Her Dr rushed everything through so fast, the initial xray and ct, the enhanced ct the next day, the bisopsy the day after - friday.... then we couldn't see the oncologist until Thursday! And first rad on Tuesday, tomorrow! She should already be through her first week of wb. This hurry up and wait is for the birds!
Well, good night. I'll give it to God tonight and get some rest.
_________________
My Mother - Stage IV NSCLC - Adenocarcinoma
Mets to Adrenal Glands and Brain
Diagnosed Thursday June 12th 2008
Died Sunday September 7th 2008
Her Story:
http://cancerforums.net/about9639.html
Her Statement of Faith Memorial:
http://cancerforums.net/viewtopic.php?t=10528 |
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pbj11
Site Admin
Joined: 12 May 2007
Posts: 2852
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| Posted: Tue Jun 17, 2008 4:30 pm Post subject: Re: New Diagnosis - my Mom **She's passed!!! |
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Hi,
Yes, hurry up and wait is often the order of the day for this stuff. Drives you crazy. Wait until scan time comes around and most people don't get the results for days. You'll be climbing walls.
Sorry -- it's a real bear of a ride. You just want to scream "fix it!!" 
Hang in there and save some of your energy for the long haul.
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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LizNDale
Senior User
Joined: 16 May 2008
Posts: 150
Location: River Falls, WI
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| Posted: Tue Jun 17, 2008 8:53 pm Post subject: First Day of WBRad |
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The difference in mom between yesterday and today is astounding.
This afternoon she had her first whole brain radiation treatment, and is very excited at having finally started her fight!
Her radiologist recommends that someone stay with her at night right from the first, though he does not anticipate any issues.
She got her hair cut really really short today in anticipation of losing it, and it's quite cute.
1 Down, 14 to go.
Her first chemo will be Thursday the 26th.
Thanks PBJ for the warning on the scan wait. I'll remember that!
LIZ
_________________
My Mother - Stage IV NSCLC - Adenocarcinoma
Mets to Adrenal Glands and Brain
Diagnosed Thursday June 12th 2008
Died Sunday September 7th 2008
Her Story:
http://cancerforums.net/about9639.html
Her Statement of Faith Memorial:
http://cancerforums.net/viewtopic.php?t=10528 |
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koikkeril
Super Moderator
Joined: 29 Jul 2007
Posts: 353
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| Posted: Wed Jun 18, 2008 9:49 am Post subject: Re: New Diagnosis - my Mom **She's passed!!! |
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My word, talk about I have been out of town for a while... You have be so busy since the last time I read your post. Sorry you have had so much stress and waiting.. Great though to know you got away with your mum for a week-end and had some laughs..
I think its good she had cut the hair, my husband did the same as he felt it may be too much shock if it was coming away in handfuls or all on the pillow the next morning.  Anyhow in the end, it wasn't as bad as he had imagined.
Well 1 gone, 14 to go is the best way to attack it, I will pray for you and mum too, I know how we are all fighting this battle together, God Bless, koik |
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LizNDale
Senior User
Joined: 16 May 2008
Posts: 150
Location: River Falls, WI
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| Posted: Wed Jun 18, 2008 8:40 pm Post subject: Re: New Diagnosis - my Mom **She's passed!!! |
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(Thanks koik and God bless you.)
2 down - 13 to go.
Mom is even better today, it seems too soon for the rad to be having an effect isn't it? She feels great, says she feels more like herself than she has in a long time - The change is palpable!
Re: her upcoming chemo, My Sister-in-law (she's a Dr of Osteopathy) says that bleeding can be concern, can anybody comment on that?
Thanks,
LizNDale
_________________
My Mother - Stage IV NSCLC - Adenocarcinoma
Mets to Adrenal Glands and Brain
Diagnosed Thursday June 12th 2008
Died Sunday September 7th 2008
Her Story:
http://cancerforums.net/about9639.html
Her Statement of Faith Memorial:
http://cancerforums.net/viewtopic.php?t=10528 |
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pbj11
Site Admin
Joined: 12 May 2007
Posts: 2852
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| Posted: Wed Jun 18, 2008 11:38 pm Post subject: Re: New Diagnosis - my Mom **She's passed!!! |
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Hi Liz,
Two down and now the fear is a little less over this treatment. Side effects won't set in for another week or so -- I think. Then it's the whole steroid thing for more time. Never did it, but my friend had WBR X 15 too. She was off her game for a bit and she had rads to the chest at the same time too.
Okay -- widow brain here, does your Mom have squamous or adenocarcinoma? Did you tell us what chemo they'd be offering? I went back but probably missed those items. Avastin is the only drug I know of that can pose a problem for bleeding, but that won't usually give that to someone who had brain mets or squamous cell. Blood clots are always a concern for most cancer patients and especially for lung cancer. Any soreness or odd feelings in her legs needs to be reported immediately. Can't stress that enough.
Glad to hear she is getting settled in to the treatment.
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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LizNDale
Senior User
Joined: 16 May 2008
Posts: 150
Location: River Falls, WI
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| Posted: Thu Jun 19, 2008 9:29 am Post subject: Re: New Diagnosis - my Mom **She's passed!!! |
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PBJ,
She has Adenocarcinoma. We're not sure what drug her Chemo will be, but it is not Avastin, we did talk about that.
She is familiar with Avastin, as she has Macular Degeneration and she has had Avastin injected into her eye many times, and it had a dramatic effect on the disease. Once Lucentis was approved for this purpose, they had to start using that so she could get covered by medicare, at a much higher cost!
Anyway, she did just super yesterday, but is tired today. She hasn't been sleeping well.
My brothers and I were still concerned that she does not fully grasp that she is in a control not cure situation, and want to make sure she is making her treatment choice knowing ALL the facts. She always talks about "beating this", "next winter, when this is all behind me", etc. We're doing that dance, trying to determine if she doesn't understand, is in denial, or if this is her way to cope and stay positive, in which case the LAST thing we want to do is stress the terminal aspect of this.
Also as I've said, no kind of time line has been mentioned. Last night we told mom we had some concerns we wanted to talk to the Dr about, she said if it would put our minds at ease, to go ahead.
She just called me, about a paragraph ago, so I asked her if she knew what the chemo drug was, (she didn't) and she said "I wish you weren't worried about the Dr", I said he wasn't the one we were worried about. That got her attention! I told we were afraid she might be making decisions without having all the pertinent facts. I said "There's a certain question we haven't asked him, do you know the question I'm talking about?" She said, rather quietly "yes". I asked that if she knew the answer to that question, can she imagine any answer that would cause her to change her mind on doing the Chemo. She said "absolutely not", that she is going to do everything she can to "beat this thing", so I said "well, that's all we need to know", I've shared this with my brothers and we all agree that we go forward and do as Brainman said, trust her. And as you said at one point PBJ, she's a smart cookie.
Wow, sorry for the novel here! But this has really been on our minds, and it feels good to be a peace with it now.
Liz
UPDATE: Just talked to dr office, the chemo drugs are Taxol and Carboplatin
_________________
My Mother - Stage IV NSCLC - Adenocarcinoma
Mets to Adrenal Glands and Brain
Diagnosed Thursday June 12th 2008
Died Sunday September 7th 2008
Her Story:
http://cancerforums.net/about9639.html
Her Statement of Faith Memorial:
http://cancerforums.net/viewtopic.php?t=10528 |
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caligirl
Regular
Joined: 07 Apr 2008
Posts: 37
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| Posted: Thu Jun 19, 2008 12:11 pm Post subject: New Diagnosis - my Mom |
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I am so sorry that you are going through this - bottom line IT SUCKS!!!
Your story sounds like the exact same thing as my mom.
Diagnosed in Oct. with Mets to brain and adrenal.....
Same radiation and same chemo........
It is all very fresh in my mind and and if you need someone to talk to please message me any time and I would be happy to share with you and be there.....
I know the pain and anxiety you are feeling right now and also your desires for answers.....
My heart goes out to you.... |
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Tera
Senior User
Joined: 31 Dec 2007
Posts: 297
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| Posted: Thu Jun 19, 2008 12:17 pm Post subject: Re: New Diagnosis - my Mom **She's passed!!! |
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Your mom is a fighter like mine was. It is critical for her to know that you are behind her 100% whatever she decides and that you aren't questioning her decision, just making sure she had all the facts before she made that decision.
My mom NEVER talked about the inevitability....she alsways talked "when I beat this", "I'm going to beat this". It took me a while before I realized it wasn't denial, but her way of coping. I think I would be the same way. You have to have hope....no matter what. Without hope, we have nothing. |
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LizNDale
Senior User
Joined: 16 May 2008
Posts: 150
Location: River Falls, WI
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| Posted: Thu Jun 19, 2008 12:38 pm Post subject: Re: New Diagnosis - my Mom **She's passed!!! |
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Tera, caligirl,
Bless you, thank you both so much.
Tera, I am so glad to read that your mom was the same way, saying the same things. I think you are right - it is her way of coping, and we will stop this wondering right now and make sure she knows we DO support her 100%.
Cali, thank you for so very very much for your post. I was devestated for you on Sunday. How are you doing? You haven't posted to your thread since then. I have been thinking about you a lot.
I do have questions for you, but perhaps it too soon?
Hugs to all,
Liz
_________________
My Mother - Stage IV NSCLC - Adenocarcinoma
Mets to Adrenal Glands and Brain
Diagnosed Thursday June 12th 2008
Died Sunday September 7th 2008
Her Story:
http://cancerforums.net/about9639.html
Her Statement of Faith Memorial:
http://cancerforums.net/viewtopic.php?t=10528 |
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pbj11
Site Admin
Joined: 12 May 2007
Posts: 2852
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| Posted: Thu Jun 19, 2008 4:34 pm Post subject: Re: New Diagnosis - my Mom **She's passed!!! |
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Liz,
Glad to hear you are all on the same page. I'm sure that is a huge relief for you. Now you jump on her "fight" bandwagon and become her advocate. Tera nailed it -- this is a coping mechanism to deal with this new normal. I saw this with, not only my husband, but with my Mom when she was diagnosed with incurable cancer when I was 24. Her journey prepared me for my husband years later. It is confusing to get a "handle" on what is rolling around their brains, especially with mets and not knowing how solid their thinking is! You did good Liz.
I'm glad we have so many here willing to jump in and help with advice/support for you. It's good to get a wide variety of perspectives and experiences. Each person's journey is different.
Steroids will mess up her sleeping. They make you feel "up". Maybe sleeping meds are necessary if this continues. Others will have far more insight into the steroid thing than I do.
Caligirl is right -- it does suck. Big time.
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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LizNDale
Senior User
Joined: 16 May 2008
Posts: 150
Location: River Falls, WI
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| Posted: Sat Jun 21, 2008 10:32 am Post subject: Results |
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| Hello all, last night i found an incredibly uplifting post on cancercompass. A 69 yr old man dx stg 4 nsclc mets to spine, lymphs and brain 4 yrs ago! His story filled me with the first true hope since this began. I read it to my mom, brother and sil over the phone and they were just as thrilled as i was. My hsbnd worked last night, home @ 6 a.m. Now we're on way to cabin. Told him story. Said first bit of hope, and it all hit me like a 2x4 and i cried for the 1st time, just racked with sobs. Didn't last long but boy have i ever needed that! |
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koikkeril
Super Moderator
Joined: 29 Jul 2007
Posts: 353
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| Posted: Sat Jun 21, 2008 6:17 pm Post subject: Re: New Diagnosis - my Mom **She's passed!!! |
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Liz
Good for you that you released some tension the worst is holding it all in. I'm a fine one to talk about crying, I usually have a quick burst of a monsoon that last a couple of minutes as i get frightened I may not stop... It looks as though your mum is going to give this fight all shes got, I congratulate her on that. I'm pleased your spirits has been raised by a post on cancer compass, it goes to show there are some exceptional cases out there that can give us hope. With hope and belief we can win. I hold you and your mum in my thoughts and prayers. God Bless koik |
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pbj11
Site Admin
Joined: 12 May 2007
Posts: 2852
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| Posted: Sat Jun 21, 2008 11:43 pm Post subject: Re: New Diagnosis - my Mom **She's passed!!! |
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Liz,
I've always said where there is life there is hope. Hold those thoughts close to your heart and know that sobbing is nature's way of helping you cope and move through what lies ahead. I've done more than my fair share too.
There are some astounding stories out there and they are uplifting. I always thought my husband could be one of those stories too. He did experience his share of little miracles along the way and we felt blessed by his survival.
Glad to hear you're having another little time away with your Mom.
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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