Just diagnosed. Mom is in stage four!!!

csp · May 2006

Mom has to be very careful what she takes during chemo
some oncs don't want them to even take a multi-vitamin as they can make the chemo not as effective. She should always , always ask before she takes anything even over the counter stuff.
Here is a link for you about this just click on the link
http://www.breastcancer.org/cmty_trans_2005_10.html

hugs,
Carrie

didda566 · May 2006

Mom won't be taking that. At least, not until she is finished her chemo. And maybe not even then.
She is loving her port. She was watching the others in the room getting poked and prodded and they just poped her on, like she was a cork board! Much nicer.
And besides getting up promptly at three am to pee every morning and her hair falling out, she is experiencing no side effects (or none that she is reporting!!)

csp · May 2006

I'm so happy for your Mom that she is not having alot of side effects from the chemo! Some don't get bad side effects, happy she is one of them. Good too about the port my sister said she liked hers but was glad when it was time to say good-bye to it too.
Boy I missed everyone too, I had guest this weekend so that helped distract me, but I kept wanting to pop in on the boards. The boards are still kinda glitchie (is that a word) lol

hugs,
Carrie

KariLynn · May 2006

566, I'm glad your mom is doing so well. Don't forget to take time for yourself and your family!!

Kari

cowgirl · May 2006

It seems so odd before the port to know how much it is sooo much better! Glad to hear she is doing well!

didda566 · May 2006

Mom is a survivor!! She got outside today. My brother bought her a new walker. It has a seat, a basket and a tray. Now she has a little more independence. With her left leg out of commission, her right hip gets sore from hopping. At the hospital, she was eyeballing a senior's walker, saying "that's the one I need!". I offered to knock the 80 something year old over and take it, but Mom declined!
With her new walker, she can now go to the kitchen on her own and fix lunch. She can not get to the toilet in her bathroom and go outside.
What a trooper!

KariLynn · May 2006

You're so sweet - willling to knock over an oldie for your mom!! Glad to hear she's getting around!!

Kari

cowgirl · May 2006

Wonderful, you can get inventive if you need to! My kids and DH rigged up all sorts of stuff for my recovery, it was a highlight of their day to help me. It means so much to the patient!

didda566 · May 2006

It is weird to know that Mom is more upset about her broke n leg than her bc. Mind you, her hair loss is bothering her too. I guess it is that people can see that bothers her more.
When we were in for treatment last Monday, she met up with the sister-in-law of a lady down the road. the next day the lady drops in to visit her.
I ran into another teacher, whom I only know from a common friend. I haven't spoken to her since the last meeting for teachers in our area in February - more than a month before Mom was diagnosed. She said that she was sorry to hear about my Mom. I was flabbergasted. How did she hear?? That is wonderful PEI.
Bought Mom a wonderful hat for Mother's Day. May get her a pair of Crocs. My daughter got a pair this week. She has been begging for them for a while. She got bright orange.
My kids are complaining that they never do exciting stuff, like visit Granny (Mom). So we will head into the country to visit tomorrow. And as my kids both say; They know they are going to Granny's house when they smell the manure! (Or bee-nou, as Matt says!)

didda566 · May 2006

What is NED?

KariLynn · May 2006

No Evidence of Disease

didda566 · May 2006

Mom's doc said that she should expect four rounds of chemo. I asked him about radiation (after her other leg doc asked if it was going to happen), but Dr. Khan didn't specify. Mom is still working on getting rid of the blood clot, and still working on her leg getting mended, but with two chemo's down and then next scheduled for May 24, what comes next? The four chemo treatments will not "cure" the cancer, so how will they manage it?
they are also talking mascetomy for the right breast, as there is an open lesion that "leaks" (mom's word) and he wants to take care of it so it won't cause any trouble.
Any ideas on what we can expect after that fourth round?
And how do they tell whether or not the chemo worked and the cancer has stopped its growth?

KariLynn · May 2006

Is the bone strengthener she gets Zometa? She'll probably keep that (I get that each month) then if her cancer is ER+ (feeds on estrogen) she may be given some kind of estrogen blocker like Arimidex.

That's just guessing because it's what I get - don't know on er- women what they do.

csp · May 2006

Here is my guess will she be doing taxotere maybe next or maybe Taxanol I think that is what it is called for 4 rounds? My sister had 4 rounds of AC and then 4 rounds of taxotere, after that she had rads 33 treatments to the tumor site after that they did pets scans but they need to wait awhile as the chemo can interfere with the results.
Now she is on Arimidex for 5 yrs. If your Mom is pre menapausal they will give her tamoxifen and post menapausal
Arimidex. My sister's cancer was er/ pr postive and she was her2nu neg. Before they started her on the Armidex they did a test to see if she was post. As she had a uterin
ablation during treatment for bleeding problems.

hugs,
Carrie

didda566 · May 2006

Can they do radiation to multiple spots on her lungs?
She is going to continue her warfarin indefinitely. They want to make sure her clot is dissolved.
Her bone stregthener is palidomate (sp?) She takes it the first of every month.
Her hair is almost gone. She is very self-concious of that. I bought her a hat for Mother's day and will probably pick up another. Gotta be styling.
Anything I can do for her? I want to be helpful, but with Dad and my sister and brother at home and I am not, there isn't housework I can do. I offered to take her to town to shop, but she doesn't want to cruise the malls in a wheelchair. Other than visits, I feel useless!
Thanks for the useful imformation!

cowgirl · May 2006

didda,
This is what life as a family member is like, a lot of the time you feel useless. All I can say is she doesn't see it that way. She is grateful for any time you spend with her doing anything! I am still praying for her!

didda566 · May 2006

Mother's day is tomorrow and I have my gift ready. I bought her a hat. She refuses to get a wig, yet is really bothered by her hair loss. She doesn't say it, but you can tell. She is als complaining about all the hair on her pillow getting into her mouth when she turns in bed.
My lovely Mother. I also bought her a new outfit and from my kids a plaque about wonderful Grandmothers.
Her dose of warfarin keeps getting changed. She goes twice a week to get checked. Up, then down. Equally frustrating for her too.
Happy Mother's Day to all the Mom's here!

cowgirl · May 2006

Aww you are such a great daughter! I am sure she will be beaming tomorrow for you and the kids!

didda566 · May 2006

I am scared Mom is holding back information about her diagnosis. I ask her deliberate questions, and she cannot answer them. Either she knows and won't say, or (maybe more likely), she never bothered to find out. I will be with her for the next doctor's appointments. Should I ask the questions, or should I just mind my own business and just support her?
She doesn't want to know anything about mortality rates, upcoming treatments, other drugs or methods of treatments. I agree that the doctors seem to know what they are doing, but I wonder if because Mom doesn't ask, she may not receive. She just goes along.
Any ideas for questions to ask (should I find the courage to ask, knowing Mom is right there, and may not want to hear a doctor and her daughter talking about her prognosis, her chances, other options etc.)?
What should I know?
What would you do???

susan_02143 · May 2006

566,

At the risk of angering you, you should know what she is willing to tell you. That is the way it works.

Your Mom has a right to know or not know what she wants, and the right to only tell you what she is comfortable sharing.

However, the fact that she is willing to allow you at a doctor's appointment, indicates that you could become more involved. Maybe. She may only want you there for support.

I have not chosen to tell my mother or daughter everything. And that is actually my right.

Just another way of thinking about this.

All the best,

*susan*

KariLynn · May 2006

You might ask things like what kind of side effects should we call you if she has, or are there any reactions we need to watch out for.

Then just ask how often they will see your mom and if there is anything she should be doing in addition to treatments to help.

Don't ask about stats and rates - they don't know how any one person will respond so it will just scare you. Maybe ask if there's anything specific she can do to improve her odds.

Take care!
Kari

csp · May 2006

When My sister was in treatment all she could think about was the treatment she was doing right then, the thought of one more or the next was overwhelming for her beacuse she was just trying to get through it.

I know how you feel about wanting to know everything , but you have to just let her absorb it the way is best for her.
What I did was go to all my sisters appt. and come here and find out info and if she wanted to know she asked me or her Doctor more questions if not , it stayed with me.

Kari's questions are very good ones to ask.

Hugs,
Carrie

cowgirl · May 2006

I agree with all the above, please don't ask stats. They really don't matter unless she actually says it is important. So go see what is going on and ask if there is really something you don't understand.

I know it is hard, but patients view treatment very different from their family!

didda566 · May 2006

All great points. I don't push Mom, but for me,, sometimes knowing is better than not.
She has let me in a lot farther than the rest of the family. She trusts me not to overreact.
Susan, you certainly didn't anger me. I have thought about that ever since Mom admitted she had found the suspicious lesion many months before it was actually diagnosed. My anger is gone now, replaced with the need to make sure Mom is going to get the best care, especially knowing that she doesn't ask the questions. She does admit that she doesn't know what to ask.
So if I stay away from the questions about rates etc (which I don't believe anyway!) and ask the questions that Mom needs to know about, like side effects, what is next, and I make the appointments she is too shy to make herself, trying to get them all aligning so she doesn't have to make any more that two trips to town (darn blood clot! Still not regulated!)
Oh, a question Mom did have is: As the doctor is thinking of doing a mascetomy of the right breast, to alleviate future problems with regards to the lesion, should she press to remove leftie too? She has had two different ladies tell her she should get them both removed. Any info on that? (A reason one said is to avoid future mammograms, which may be a good thing for Mom as she has never went for one.)
You guys are wonderful here!

csp · May 2006

Didda,
I think you are on the right track!
I had to help my grandma the way your Mom may need help.
And it is a good thing to know what to expect for side effects and when you should call the Dr. You know what Mom needs and I know from your post filled with caring for Mom
you would never ask anything that would upset her. My Grandma viewed her Onc as a very importain person so much so she would'nt even call the office if she was very sick, (she did'nt want to bother).
I could'nt even begin to tell you about the bilat mast
but I am sure someone else with more info will be by.

Hugs to you and mom,
Carrie

cowgirl · May 2006

I think you are on the right track with the questions.

On bilateral, I had one and do not regret it. I wanted my best odds for no reoccurance! But that being said I was sure about it. She has to be sure about it and want it in order for her to go through with it positively.

susan_02143 · May 2006

Dear 556,

If you are going to be your mother's primary caretaker, then there is so much you can do to help. My experience with all of this is being the patient and having my husband as the caretaker, and watching my sister as the patient, with my mother as caretaker.

I would use my sister/mom combination as the model.

Make it clear, that all you want is for your mother to get through treatment with dignity and with a good outcome. Offer to go to all appointments with the Journal, which you will keep. Having a journal is VERY useful. In this journal, you would notate dates of appointments, names of the doctor or nurse or resident. On a surgery day, you would notate the drugs used, the amount of fluids drunk, etc. For any drug prescribed, you would notate the possible side effects. On non-doctor days, you might notate how much is eaten, what your Mom felt like. This allows you to see trends that you might miss, that might indicate a side-effect.

The first page of the journal, I kept a list of all my doctors [I quickly had many], their speciality and their phone and beeper numbers.

One of the most important questions to have answered is: who do I call: if my mother is running a temperature, is having nausea, etc. And keep asking at each stage of treatment. The answer does change.

Help your mother fill her pantry with easy to prepare foods [or freeze home made dinners], so that her energy is being used to get better not making food. This is especially important if she has chemo, since she will need to eat small, nutricious meals every two hours or so.

During appointments, if you don't feel that the doctor has been clear, ask your mother "Did you understand that?" giving her permission to ask further questions. Find that one amazing nurse [there is at least one] who makes you and your Mom feel comfortable so you and she can ask more questions later.

The journal will give you a neutral reason to ask questions, i.e. it is for the journal. Finding the balance between being aggressive [my Mom] and too passive [my husband], while learning a new mutual vocabulary, and maintaining your Mother's trust is complicated. But, all family dynamics are right?!

It is a hard journey.... do what you can to only do one step at a time.

*susan*

didda566 · May 2006

WOW! You all are full of good stuff. I am not the primary caregiver, as my brother, sister, her two kids, and my Dad live with Mom. I consider myself the entertainer and the sensible one she can turn to when she has questions. I am the reminder that she has such and such appointment and that she should remind the doctor to get her an appointment on the same day as her "leg" doctor. I am the alternate driver, one there in the not so comfortable chair as she receives her treatments, and I am the one who is trying to push her to become less sedentary and to get out of the house.
My sister is the daily feeder, cleaner and houseworker. My dad is the regular driver, although he doesn't have the patience to sit with her through all of it. (I personally think it unnerves him to see his wife of 40 years sick). My brother is also the cook.
I am also the "seeker of information", and the errand girl. When she wants honey garlic wings, I bring them out. When she needs money, I am the go getter. Together, we all care for Mom in our own ways. They on the daily basis, and me on the twice weekly visits and twice daily phone calls.
She trusts me to want the best for her. I am trusting her to beat this thing!

didda566 · May 2006

How horrible would it be for Mom to get a cold?
She has her next treatment coming up on Wednesday. Would it prevent her from her chemo?

didda566 · May 2006

I was talking to Mom today. She went in for round three yesterday. (She is doing fine, by the way. Still no nausea, which she finds really funny)
She tells me that she got on the scale to get weighed and Dad says, "I should see how much I weigh." (I start laughing here, because you know where this story is going!!!) The nurse adjusts the weights and says, "how much do you think you weigh?" Dad says, "180." (By now, I have tears down my face, as I already know the punch line. I am laughing so hard Mom is laughing, trying to get the last sentence out.) Nurse turns to him and says, "Try 224."
My Mom always finds the fun, n'est-ce pas?

Just diagnosed. Mom is in stage four!!!

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