New Diagnosis - my Mom **She's passed!!!

LizNDale

I was quite relieved to get the release. I was beginning to wonder if I ever would! Ironic that it was Hope that let me.

Actually Dale and I went to the cabin by ourselves. My local brother and sister-in-law took mom up to the north shore of Lake Superior, her beloved Lake Superior, where they had a wonderful weekend, though she came home exhausted. She goes up there for 6 weeks every summer, and is heartsick that she had to cancel those plans. So we're going to do whatever we can to get her up there every now and then, as she feels up to it.

Today is rad # 5, 10 to go. Her first Chemo w/b Thursday.

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

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2367

Liz,

Glad to hear all parties got a break this weekend. It is a good idea to keep plans loose, as you have described. Hopefully she will do well and be up for more little getaways. You're doing everything fine. I'm relieved that you sound better.

Go Mom!! Very Happy

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

LizNDale

Hello, all you wonderful people....

Today will be Mom's 7th WBR, 8 to go.

Tomorrow she will have her first chemo.

Yesterday she met with radiologist after WBR for weekly check-up. She has had few issues with the WBR so far, nothing he is concerned about unless they continue or worsen.

Some major sleeping difficulty since diagnosis, so he has prescribed .5 mg ativan. She didn't need it last night. She's been reluctant to take perscription sleeping aids, but her trouble sleeping is really starting to wear her out.

She passed all the neuro tests with flying colors, overall he is very pleased!

So, about her first chemo, any advice on what we should make sure we ask for, ask about, or do?

Thanks,

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

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2367

Hi Liz,

Hydration, hydration, hydration. LOL I'm sure you've seen this posted before. The more fluids (non-caffeine) the better.

Make sure she takes her anti-nausea pills beginning the night of the chemo infusion. Staying ahead of nausea is far better than getting behind and playing catch up. If the pills the doc prescribes don't work, call the office and get a different prescription. Not trying to scare you as some people never experience a moment of nausea and there are many fantastic anti-nausea meds out there nowadays. She shouldn't have to deal with nausea because of that. It's a matter of finding the right medicine to control it and it may need tweaking.

They will probably give her a pre-treatment bag with benedryl, steroids, and an anti-nausea med. This depends on what type of chemo she is having. If it's carbo/taxol, that's pretty standard pre-treatment meds. The steroids may have her feeling pretty energetic that night.

Sleeping issues are not at all uncommon. We used every sleeping med in the book for my husband because his brain wouldn't settle down at night. I think that's when the huge life fears come popping out. If the ativan doesn't work, make sure she gets on something that does. Sleep is important.

Will you be going with her? Is that a stupid question? LOL Some patients can experience an allergic reaction to taxol, so just watch to see if she turns red, starts itching in her hands, or is feeling short of breath. (Anyone else with a taxol reaction, please feel free to jump right in as there may be more early signs.) IF that should happen, notify the nurses immediately so they can stop the drip and tweak the meds. If it is carbo/taxol, prepare for a long day. They really need to do a slow drip with the taxol and it's a good sized bag. Bring munchies and something for her to do or just let her sleep.

This is one of those scenarios that we discussed before -- you don't need to share this with your Mom. Selective information so as to not worry her more. Often the nurses won't even tell you about a taxol reaction because they think that you'll get it in your head and help self-create a reaction. Don't quite get their thinking, but we've had that experience with a different chemo drug.

Ask about taking any extra B6 for any possible peripheral neuropathy issues. Some people have problems with this as you have more chemo, but others never experience any problems. Again -- each person and their own reaction is very different. Low amounts of B6 are supposed to help. It is an anti-oxidant, so too much can undermine the chemo. Always ask the doctor before adding any vitamins or supplements.

Good luck with chemo tomorrow and I hope she feels more comfortable once she gets the first one under her belt. Glad to hear the rads are going well.

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

LizNDale

Thanks PBJ...

Should she start hydrating before or during?

Yes, carbo/taxol...

Yep, we'll be with her all day!

What kind of munchies would be good for her? (or bad for her! Or did you mean for us LOL!!)

Thanks for the heads-up on taxol possibility, we'll keep an eye out.

Thanks again PBJ, you're a peach!

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

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2367

Hey Liz,

I rather think of myself as a plum. Laughing

She needs to up her drinking following chemo. Wait -- make sure she is hydrated before chemo so that her veins will be nice and plump for them to get a good line going.

She needs to keep the fluids going for most of the time now. Especially in the week following chemo to flush things out of her system and help make the crash go away faster. Most of us probably don't drink enough fluids, so make sure she has water, gatorade, etc. around to help with hydration and electrolytes. Have things she likes -- and be prepared for her "likes" to change. Chemo can play with tastebuds too.

I'm a bit on the outside about diet and nutrition. Weight loss was a big problem for my husband, so he ate any darn thing he wanted to pack on the pounds. I would run out and grab food to carry-in for lunch for us, but I'm a sandwich shop/fast food diva. I did see a lot of people with little cooler bags stocked with goodies. Sandwiches, fruits, etc. You know the drill. Gives her something to do and she'll probably get hungry with such a long day.

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

LizNDale · Posted: Thu Jun 26, 2008 5:55 pm Post subject: Mom's First Chemo

8 WBRs down, 7 to go. over the half way mark!!!!!
1 chemo down, 3 to go.

Mom had her first Chemo treatment today, followed by her 8th Whole Brain Rad.

Her long, hard day began at 8:30, and now at 5:30 she is finally home and napping.

She had no ill effects at all during the chemo, and was very happy to get started with it. But she's glad there are only 3 more to go! It took about 40 minutes for the steroid and anti-nausea, 4 hours for the Taxol and then 40 mins for the Carboplatin. And then she had to go across town for the WBR! So as you can imagine, she is very tuckered out.

We are prepared for any side effects that may pop up, we know what to watch for and what to give her, if needed.
We are all hoping that she is one of the lucky ones who suffers only fatigue.

Her spirits are excellent, overall, with some moments of feeling overwhelmed. She is such a trooper, has such strong faith and such a strong desire to fight this monstrosity, and we all so very, very proud of her. I told her today she is an inspiration.

Her next Chemo will be July 17th.

With Hope,

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

LizNDale

10 WBR down, 5 to go...

1 Chemo Down, 3 to go.

Today is day 4 post-chemo...Other than feeling a bit tired, Mom has had 0 reactions so far to her first round of Chemo! (or to her WBRs) And she decided to not take the anti-nausea unless she needed it. Her Onc was pretty confident that the anti-nausea in her prechemo round would suffice, and he appears to have been correct!

She also had a Neulesta shot the next day, but again so far no bone pain.

We're keeping our fingers crossed that her future treaments are similarily easy on her, but we realize that there may be a cumulative effect.

With a sigh of relief,

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

koikkeril · Super Moderator Joined: 29 Jul 2007 Posts: 352

[quote="LizNDale"]10 WBR down, 5 to go...

1 Chemo Down, 3 to go.

Great news that your mum is not having bad affects from the treatment. Very Happy

I hope it remains this way throughout, she seems quiet blessed. Take care of yourself also, thinking of you, God Bless, Koik

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2367

Liz,

I know it's a holiday weekend, but wondered how things were going for your Mom? I'm sure some of the effects from the rads and chemo are beginning to show up, but don't be frightened, these side-effects do subside. Often things seem worse during treatment, but they reverse themselves as the body heals on it's own time-table.

Thinking of you and yours.

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

LizNDale

13 WBR down, 2 to go...

1 Chemo Down, 3 to go.

It's been a rough few days for my poor mom. Thursday morning she started feeling "trembly" inside and fell down...she said she knew she was going, so she went with it and landed on her bum, taking down a small table stand as she went. Her sister ran to her and she was flat out on her back, she says she wasn't responding at all to her at first... After a couple minutes she was able get up, it took some doing. She was pretty shaky and my california brother went over there..he had got into town late the night before, stayed the night at my local brother's house, 10 minutes away. this was the first time he had seen mom since she was diagnosed. he said they pretty much had to talk her through the motions "now your left leg, now your right.." They took her to her rad but first saw an oncologist onsite..they said could have been seizure or low blood sugar, but her BS levels were good by the time they took it..

The day before she was getting her hearing aid worked on and when the tech was working on insertion, said there was something there that was not right, they looked at it Thursday, and said it was related to the cancer, but we're not sure if it's a new tumor or what. It's in her left ear. It's a growth of some kind at any rate. After the rad she wanted to go to perkins to eat and they did, but she was pretty bad off... later, my calif brother shaved her head, cause her hair was coming out so fast. By the time I got there about 3:00, I was astounded at how poorly she was. Really out of it, and hardly using her left side at all. I helped her in the bathroom, and she wasn't using her left arm or hand at all, and couldn't lift her left leg.

As I was standing behind her and she was washing her hand (not hands), she looked at me in the mirror, her face just crumpled and she started crying. Oh if only love and loving arms could take this away! I held onto her from behind and she just laid her head back on my shoulder and cried for a couple minutes.

She is so doggone sweet, always has been but is now really so. She lays there, and smiles.

Still no pain! Just horrible fatigue and weakness.

Friday she was much better, Saturday she was worse again. She and my calif brother came to the cabin on Saturday. Lots of time on the pontoon, she really loves it. Today she was better again, so lots of ups and downs.

Saturday she needed help getting up from the toilet, today she didn't.

Today she said she could feel that thing in her ear. We're anxious to see what the heck is it, and to see if it's growing..well, it must be, she had her ears cleaned 2 weeks ago and they would have seen it then, if a hearing aid tech could see it 3 days ago. So we're not feeling real good about it, especially since today she could feel it. She said it wasn't a pain, but a sensation.

Her sister has gone back to New York, my calif brother (who is in nursing school, pretty cool for a 56 year old) will be staying with her for 2 weeks.

Mom loves in a senior community, tomorrow we are meeting with the folks there to see what her care options are. She needs someone with her 24/7 now, and we really have to figure something out soon, as we siblings are running out of vacation time. She wants to stay in her apartment, not go to the "big house" as she calls it where they have assisted living. So we'll see.

And now she wants to buy a 1/4 share in a cabin on Lake Superior, where she won't get access for a year, as it is rented out until then! Of course if that's what she wants, we'll support it, but as before we can't decide if this is hope or denial.

Sorry for this rambling mess of a message....

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

Tera · Senior User Joined: 31 Dec 2007 Posts: 279

Oh Liz....I know this is all so disconcerting and painful to watch. I am so sorry you are going through this. It hurts.

One thing.....I realized in hindsight after my mom passed away....the brain mets cause confusion. So some of what she says that don't seem feasible can be because of the brain mets. When my mom was completely bedridden, I asked her once where she put something. She said she couldn't remember, she would show mw when se got up. Well, she hadn't been up for three days and she wasn't getting up again.

If something doesn't sound feasible to you and you know it wouldn't be feasible to your mom either if she were thinking clearer....chalk it up to the brain mets because they can mess with her sense of reasoning.

LizNDale

Thanks Tera, and thank you too PBJ< I meant to say that in my post, thanks for checking in and for thinking of us, it means so much.

This thing about the 1/4 share, she LOVES Lake Superior with a passion. Whenever she is there, the first thing she does upon awakening is say "Good morning Lake Superior, you are a very Superior Lake" For some years she has thought about buying a place, and when these cabins at this particular resort came on the market for shared ownership last week, she got so excited. It would mean so much to her, and I'm all for it even if it is just for Hope, cause it gives her something positive to think about and strive for in the midst of this hell. I think she'd want to do this if she wasn't sick. It's just that, yes we want to hope too, but we also feel a bit realistic about her future...you know what I'm trying to say? We won't say anything like that to her, but we're talking major decisions here for her and major $$.
So we're just going to have to take it as it comes. She wants to go forward with it, and I don't think we have any other option than to go along with it! It's her $$ after all, and when I think about the true joy it will bring her to just know that she owns that 1/4 share of that cabin she loves so much, on that Lake that she just adores, it'll be worth it even if she never does get there. Adn you never know, she just might! Back to hope!
_________________
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

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2367

Liz,

Wow -- a lot of things happening. I hope these issues resolve as time goes on and the rads are over. This house thing is a real monkey-wrench thrown into the works for you. I truly understand the two sides of realism and hope. You never want to send signals that you've ever even thought about giving up hope, but buying a 1/4 share is a new twist for me. Wink

Maybe she'll forget about it, but sounds like something that she dearly loves and may be thinking about this "one last thing" in her own mind. No one can know for sure, especially with mets and rads. The thinking does get funky.

I am concerned about her housing arrangement and hope you can find a reasonable solution for her soon. You need to know she is okay too for your own well being.

Many hugs, thoughts, and prayers,
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

LizNDale

Thanks PBJ...

Yesterday we met with the Assisted Care folks where she lives, took a tour over at that building, and mom quite liked the 1 bedroom set up... it's very bright and looks out over a beautiful flower garden.

She's going to keep her apartment for a couple months at least, but stay at the assisted living - we think this solve a lot of the issues.

Today is her last RAD!! And she gets her first blood test for Nadir period, and we should find out more about her ear today too.
_________________
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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