Is this one of those can't answer questions? - 1247543

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sleepless in jersey
Is this one of those can't answer questions? - 1247543

Hello all

Not sure if I ask the Doc's if this is lepto or results from wbr/chemo brain, but I'll give a shot with all of you.
I asked how is Mom doing, he said she emptied the dishwasher and they all were dirty, so he had to take everything in cabinets and re wash it all (doesn't know if clean or dirty),says went to bed at 7 last night and woke at 8am he's assuming she got up thru the night and took something, because she is in a serious fog. Poured a cup of coffee and forgot there was one sitting on the counter, she wanted to know why he took apart the cd player and left it there (he didn't touch it and there's nothing wrong with it) she did laundry as well and had only a couple of shirts (wasn't worth a load) and left it one extra large dial. He also said on wed. she boiled chicken and boiled for 2 1/2 hrs needless to say what it tasted like after Dad came home from work and thru it on the grill....one bite it was in the garbage.
He said they don't even talk like she can't register a conversation. Doesn't want to really eat anymore and still using the megace every morning.

I hope somebody could offer chemo brain/wbr or lepto experience and say yup that's exactly what my ....went through with wbr/chemo or lepto to make heads or tails of this? We do have Onc appt. on the 12th, but I know she's not going to be able so say yes it's this or no it's this. Sometimes it's one of those things what friends and family have experienced I believe.

God Bless
Sleepless

catdander
Reply To: Is this one of those can't answer questions?

Sleepless, I actually don't hate to admit this but I have done most of those things in the last 3 years. When D was in the throws of chemo/rads post surgery and on lots of medication he was in much the same state as you describe your mom. So I don't think anyone can tell you if it's one reason or another. I understand that getting progressively worse can be a sign of brain involvement.
I can't imagine watching my mom go through this and I'm so sorry.
Keeping you in my thoughts,
Janine

Dr West
Reply To: Is this one of those can't answer questions?

To be honest, I'm concerned that this is related to the leptomeningeal carcinomatosis. Brain metastases tend to have more of a finite, specific issue like weakness of a limb or double vision or headaches, rather than just not being able to process things mentally (though there is definitely some overlap). That said, it's possible this could be related to medications, particularly opioids if she's on them, and/or metabolic problems related to her cancer. But overall, I'd have to say that this sounds most concerning for her symptoms being related to her leptomeningeal disease.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

laya d.
Reply To: Is this one of those can't answer questions?

Sleepless:

I believe this all warrantes a telephone call to her Onc. I think they should be made aware of what is going on with your Mom. Is she on any medications at the moment that may be making her foggy and confused?

Laya

sleepless in jersey
Reply To: Is this one of those can't answer questions?

Thanks CD, Dr.West,& Laya for your advice.

Spoke to Dad yesterday and with the several abnormal things that Mom had done he figured himself that it's the meds if not, there's got to be seriously something wrong, so she has a load of scripts for like thyroid, bp, sugar etc and there all in different areas so he went over everything with her do you need this and what do you take this for, besides that he has labeled in marker on the bottles prior to this anyway on the major bottles like(percocets-"PAIN", lunesta-"SLEEP", tarceva- "BAD BOYS") you got the drift.
So he knows she just gets up in the middle of the night and takes something weather its for pain of her rt shoulder or sleep because that's something of the past, she just doesn't remember what she took or when or how many is the problem? I have told him in the past you have to put in a dispencer or something she's going to kill herself, his theory I need her to be able to get up and take her pain med if she needs it otherwise she will just lye there in pain with tears and not say anything to him throughout the night.
So he said give her til Tues. let's see what I did with her meds a chance and if not call the Onc on Wed.

Suppose to go there today for a BBQ I will keep you all posted!
God Bless
Sleepless

double trouble
Reply To: Is this one of those can't answer questions?

Hi Sleepless. I hope your father's plan works and you all enjoy your holiday BBQ. I have a pill organizer. I don't know what I would do without it; here's a link to a site with a picture of the kind I use

http://www.sears.com/shc/s/p_10153_12605_SPM6009361307P?sid=IDx20110310x...

You can get them cheaper than the one shown, and you can also get some that lock.

Perhaps they could set out a little cup with a safe dose of pain meds on the kitchen counter at night, so that if she needed it she could find it easily, and store the rest of the pills somewhere else so she would be less likely to take the wrong thing, or too many of the right thing?

Debra

catdander
Reply To: Is this one of those can't answer questions?

I think Debra and Laya's ideas are right on. I don't know what D would do without his pill organizer. You could even put it together for them once a week. I really like the idea of putting a dose of the pain pills out each night for just in case.

sleepless in jersey
Reply To: Is this one of those can't answer questions?

Hello
Well, never had the BBQ on Mon.,Mom said NO...my brother called and said were all coming by and looking fwd to it and she heard all his 3 kids that are 7 and under screaming (she was turned off and went back to bad, Dad said, and wanted nobody to come over) so no BBQ on Labor Day :(
Dad had a bad Labor Day wknd with several episodes with her that I just can't put into words.
Dad re-approached Mom re:Valley Home Care to come and eval. and see what they have to offer and if she will go for it...she didn't say NO, but didn't say yes this time after Dad explained what she did x y & z over the wknd. I spoke to Onc's office they made it happen and they came today. Very nice RN, however cut & dry. Mom started with her tude" yup here goes the hospice"...the nurse intervened and repeated that she is not hospice etc.
The nurse elaborated how she is very worried about her safety (as we all are, however now that all our kids are back to school as of tomm we'll all be there more often, she was bit more comfortable) she gave Dad a pill box and CS it looked exactly like the one you sent the pic of, however Dad said he will have to fill it daily not wkly, because she may get her day's confused (some days are Mom and some are....)
Dad finally got her pills in order over the wknd and put narcotics up high that she can't reach and thought it was all good until the nurse came and it woke us all up...
She states a nurse will come starting Mon. and it will be prob. twice a wk (forgive me not sure of the amt of time, I think very short) for about 3 wks and we could extend it as we need it and next wk. She also called her Onc to confirm right than and there for pain management what is what she wants, P.T. will come to do there eval. and see what they have to offer.
Mom was a mess I was told when I left they are going to make me use a cane or a walker now a life line etc...when I went back several hrs later with dinner she was better.
Oh my God help me have the strenght
Sleepless

Dr West
Reply To: Is this one of those can't answer questions?

I'm so sorry. It sounds like your father is also going through a lot. I know that having a home visit RN is just a first step, but it is a good foot in the door. It may become a lot easier to get her to accept more care once she gets more used to having at least some help. Hang in there.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

sleepless in jersey
Reply To: Is this one of those can't answer questions?

Thanks Dr.West
I hope it will get much easier once they come and get things all in order a long with some P.T. at the house we'll be in better shape.
"C" is rough on everybody and I always had told her it's going to be like riding a roller coaster your not always going to be going up the coaster there are going to be times your going down that hill, but keep your chin up and we'll climb back up that hill again together!

Keep you all in touch
God Bless
Sleepless

catdander
Reply To: Is this one of those can't answer questions?

Hi Sleepless, I remember what I thought was a good suggestion about home care. If the person with cancer is set against someone coming into the home it may help to address it as a need for the caregiver, which it certainly is. Hopefully as time shows how valuable the support is you can point out to you mom, when she is most lucid, how handy the help is for your father.

sleepless in jersey
Reply To: Is this one of those can't answer questions?

Well spoke to Dad yest. he wanted to let me know what the P.T. guy had to say when he evaluated Mom on late Fri. Mom will get about 3wks of PT I believe he said 3 times a wk at there home. After having Mom do somethings like walking up the stairs, around the kitchen island etc. He said she is not ready at this time to leave the house at all! Mom no longer wants PT, Dad says she doesn't want it do to the amount of time, she said it's a waste. Anybody who does PT you don't get results in 3wks. Mom was not in a good place on Sat. night Dad said she wanted to go out to dinner and he said we can't you heard PT...well a lot of French was in there house!
He was suppose to take her out yest. for like ice cream, a nice country drive, nothing that consisted her walking anywhere.
The Nurse is suppose to come today and PT. Mom also hates the pill box the Nurse gave Dad last week, she states I have been doing it on my own for so many years and now this is confusing me why are you doing this etc... you could explain it til your blue in the face every time, but she doesn't remember that you already told her why.
I will be bringing her to Onc on Wed. for her monthly visit, hopefully nothing to report in.

Dad did express he would like scans now to see what's going on, however I told him she's not due til mid Oct. and why, it's not going to change things, TX stays the same or they stop Tarceva and call "H" in and he agreed let it go and lets go try to enjoy our family trip next wknd!

God Bless
Sleepless

Dr West
Reply To: Is this one of those can't answer questions?

I'm sorry to hear how hard it's been. It's bad enough when someone is very debilitated, but it's even worse when their expectations aren't realistic. I think it makes the whole situation even harder.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

sleepless in jersey
Reply To: Is this one of those can't answer questions?

Dr.West ...thanks for always being there!

I brought Mom to Onc yest. Onc wanted to know how is the balance and the confusion? Mom stated the balance is not good and she looked at me about the confusion (without making Mom upset I shook my head and bulged my eyes so she would clearly know very confused) Onc said well we don't have a written dx since you cx the LP, but we know you have it and it looks like it's progressing....soooo Donna how do you feel about stopping tx and we could tx you pallatively and call hospice in? You could have heard a pin drop that seemed like 20mins, but seconds later Onc explains we don't have to make that decision now if you don't want to! I but in now and say I don't know what my parents of spoken about together, but I do believe she is not having any symptoms with the Tarceva and that we would continue with it til scans in mid Oct. and we could discus than. So that's the plan for now.

We are packing to go on our big family trip for this weekend and planning to make wonderful memories with lots of pictures and video taping.

I know we have come along way with cancer since Mom's sister died of cancer (lyo-myo sarcoma of the pulmonary artery) 15 yrs ago, but it just bothers me so much why we have so many why's still?

God Bless
Sleepless

catdander
Reply To: Is this one of those can't answer questions?

Hi sleepless. I think that's a fine plan and y'all should feel good about it. We are sitting in a hotel in Grand Junction and will get on the water in the morning. I was worried about the plane trip but it was good and I have a feeling that the rest of the trip will only get better. Let's make some memories!
Janine

sleepless in jersey
Reply To: Is this one of those can't answer questions?

CD...good for you, I missed something that you were doing this WOW
Have so much fun and definitely lets make lots of memories....CHEERS to making memories :0
Enjoy...
God Bless
Sleepless

double trouble
Reply To: Is this one of those can't answer questions?

I'm so sorry things have been difficult. I just had a very long talk with my son about what all of this is doing to him. Cancer just eats away at everybody involved. You guys deserve a vacation and I hope you can all clear your minds of this disease and just enjoy being together. I'll be thinking of you.
Debra

Dr West
Reply To: Is this one of those can't answer questions?

I'm sorry it's been so rough. Nobody would argue thay cancer can be truly awful and often is. But it sounds like you and your family are doing the right thing under trying circumstances.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

sleepless in jersey
Reply To: Is this one of those can't answer questions?

Thanks Debra and Dr.West
You know when Mom was DX when the Doc came into the ER and said you have a brain tumor...would you like me to get your family (who were standing outside her door) and when he stepped out and went on his phone and he said nothing to us and heard Mom hysterical by herself, we decided we better go in to see what happened...we told Dad you better go in and we waited just a couple of minutes and saw them embracing each other and crying so hard. That is one of the moments in my life that I will never forget as long as I live.
Never in my wildest dreams did I know what was not only in Mom's journey, but Dad and my journey as well.

Yes it has been a very rough road and our journey still has more in store for us, but I am ready for what it's going to throw at us.
So I am going to say nighty night, I am exhausted and have a full day a head of me before our trip!
God Bless
Sleepless

sleepless in jersey
Reply To: Is this one of those can't answer questions?

Hey all...just wanted to share some smiles your way...my parents called the landlord of the house we rented for 4 days and wanted to take an extra day. So they headed up to LK George early this afternoon and Mom was so excited and loved the house I found online....they both sounded like a 5 yr old at Christmas omg you have to see this and you have to see that! Wish we were there now with them, but my dog sitter can't take our crazy boxer til the morning. I can't stop beaming and they want to rent the place for New Years.

I thought I would read this fortune cookie we opened not long a go and it's been on the fridge " A focused mind is one of the most powerful forces in the universe" WOW

live, laugh, smile
Sleepless

PS-Have a good weekend and I'll catch up with you on Tuesday.

Dr West
Reply To: Is this one of those can't answer questions?

So glad to hear something positive...long overdue. Good for you.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

certain spring
Reply To: Is this one of those can't answer questions?

Yes - so nice to hear that your parents are happy. You all deserve some nice times together.

Jazz
Reply To: Is this one of those can't answer questions?

Lake George is wonderful this time of year. Good for your parents, and how awesome of you to find them the rental! I hope you can all have a nice reunion on New Year's! Good cookie fortune too :)

Jazz

sleepless in jersey
Reply To: Is this one of those can't answer questions?

We made it.... and had a good time under the circumstances we dealt with! Mom had one bad night towards the 7pm time she reached the end of her patience with the kiddies screaming, running all over and crying (1 boy age 3, 2 girls age 5, 1 girl age 7, 1 girl age 12 and 1 girl age 16) so Dad and I had to bring her up to her bed she was using quite a bit of French at that point other than that it went well. She looked happy from sitting on the front porch watching the family fishing, paddle boating, row boats or being just plane old silly. Than when she was ready, we got her outside on the aderondeck chair and got some air/sun and just good old laughter in front of the Lake!

Dad and I are just praying Mom doesn't get sick, 3 of the little ones ended up with fever's/coughing/sneezing.
By the time Tues. morning came they couldn't run out of the house fast enough with the grandson who's 3 yrs old that cries all the time and just doesn't listen so that was a bit of a downer, but we made it and the weather held off til Tues. was the only day of rain, the rest of the days were amazing!!!
Dad still had to get up with Mom the usual 4 to 6 times a night so he knew he had to pack it in early and couldn't stay up with us to midnight plus.

Dad was not looking forward on the trip ending...back to reality :(
Hope all had a good weekend and it was uneventful for all!
God Bless
Sleepless

catdander
Reply To: Is this one of those can't answer questions?

Thanks for the update on your fab long weekend. It sounds like your mom really enjoyed herself. How wonderful that she and your dad got this opportunity. :-P But I certainly understand the need to leave when your not feeling up to it and the unhappy/crying level gets too much and it's getting close to ending anyway. Sounds just about right actually. :wink:
We too had a wonderful time. It was much more quiet with I think 15 folks in all. It was a guided river trip including 3 guides who cooked the most wonderful 3 meals a day. More food than I cook in a week. I guess I need to step it up. All the people were adults who needed time in the (simi) wilderness. A really great group of people. The canyons were spectacular everywhere you looked.

Janine

sleepless in jersey
Reply To: Is this one of those can't answer questions?

Hello CS

I'm so glad you guy's had a wonderful time, it sounds great! I could just imagine the pictures you have to show everybody...good for the 2 of you :)
Sleepless

sleepless in jersey
Reply To: Is this one of those can't answer questions?

Again one of those questions I kind of don't want to know the answer, but I have to do the right thing...

Neurosurgeon told me to have her repeat brain MRI in 6wks and that's from 7/17 so as you know got approval we could post pone til we got back and enjoy the trip, however they haven't called us for them to pre-cert (also Mom needs pre-med as well) I kind of was going to do them together ct scan & MRI in Oct. since she's due for ct anyway in 4wks is that wrong of me to not contact them.

Dad's thought also is why continue to do scans after this set in Oct. of course depending on what they show, why put her through all that...Is Dad right that God for bid the downward spiral continues, is there a general rule?

PS-Home care finished this week, they said Ins. would only pay for 3wks (I have to say I don't know if they all are like that or just this agency, but they did absolutely nothing :( )

Sleepless

catdander
Reply To: Is this one of those can't answer questions?

Hi Sleepless,

That's a good question. The only reason to do scans or any kind of work up is to help tailor the coarse of care. I don't know the answer though. Let's find out.

I'm sorry the home health care wasn't helpful, what a shame. I know we were hoping they might help your mom ease into the idea of hospice for when the time comes. ... your mom's a tough old bird. (please take that as it's meant, I've been identified as one, my only regret in hearing it was it just didn't seem that long ago I was a spring chicken :-P )

Janine

catdander
Reply To: Is this one of those can't answer questions?

What regimen of tarceva is your mom on? Pulsed? How many mg and how often?
I've contacted a doctor for input

sleepless in jersey
Reply To: Is this one of those can't answer questions?

Hello CD
Mom is on 150mg not pulsed, 1 a day. After how the Onc reacted when I brought it to her attention I got nervous to push the issue. Also with previous patients it has worked with EGRF pos. patients and Mom's neg.
I also felt that if she had a reaction or something happened how do we tell Onc or whoever (yea I'm a scaredy cat)
Oh and she is a tough bird or as we call her a tough cookie LOL

My parents good friend who is the head Rad at a different Hospital has always viewed Mom's scans (we always had copies made and dropped off at his house) he said to me I didn't expect her to last as long as she has...with us being on top of her and the positive attitude says a lot! Now I am just being greedy I want more, I want her to fight til June so she could see her 1st grandchild get her drivers license (my daughter) that's one of the things she was crying about in July when she was told the awful news of pos Lepto.!!

Sleepless

catdander
Reply To: Is this one of those can't answer questions?

I'm sure you're a lot of things but I'm not so sure about scaredy cat. I wouldn't want to try something D's onc isn't aware of.
this is a no blame disease. It's awful all on it's own.

mpinder
Reply To: Is this one of those can't answer questions?

Dear Sleepless,

I'd agree with your radiologist friend that it sounds like your Mom has done very well with a very tough cancer and it sounds like she has a great support system. Reviewing the treatments your Mom has had so far, I would agree that she has exhausted most of the options we'd consider effective in lung cancer. In a situation like this, I generally do not continue to do scans for many of the reasons you outlined. It is not trivial for a debilitated patient to go through scans and if they would not change what we would do for the patient, there is really no good reason to do it.

The only situation where I will occasionally do scans when there are not additional treatment options is when a patient or family sort of needs to know that things are progressing before making a decision about hospice, living arrangements, etc.

All the best to you and your family.

Dr. Pinder

sleepless in jersey
Reply To: Is this one of those can't answer questions?

Thanks for you response Dr. Pinder...We kind of thought that's what the answer would be, but didn't want to assume.

Speechless instead of sleepless

sleepless in jersey
Reply To: Is this one of those can't answer questions?

Going into panic mode...I picked Mom up yest. to come hang and watch movies with my husband since he can't do anything right now 1 wk since his knee replacement. So she came and did well from 10:30 til I brought her home about 4:00.
Dad called me this morning to ask when does Mom go to Onc. I said next Wed. he said you need to call her I want scans now, why wait to see her next Wed. to order scans after appt. and than go back to see her in 2wks again...it's to much on Mom. I asked what's going on he said Mom want's to see another Doctor she knows she's getting worse (I told Dad we can't there's nothing else they could do, he know's that) he said last night was real bad again she needed 3 seperate times help to get into bed and the last one he said she just leaned against the bed and couldn't figure out how to get in it. He said if she stays like that through the day she can not stay home alone at all!
I said if I call I know exactly what Doc is going to say at the results and you don't need to be a Doc to figure it out...she's progressively worse and to stop tarceva and call hospice in are you prepared for that, he said am I wrong, what's the answer, I don't know if there is a right or wrong answer, but what I do know is what she is going to say and I prefer to wait, I don't want to hear it right now I would rather push it off til November.

Any thought's before I call Onc this morning?

Sleepless

certain spring
Reply To: Is this one of those can't answer questions?

Your poor mum and dad. This is so hard for them and for you.
I don't have experience of the US system and would defer to others who do, but from everything I've read on GRACE, people don't regret having called in hospice - in fact all they regret is not having done it sooner. Dr West wrote a little piece about this a couple of weeks ago:
http://cancergrace.org/cancer-treatments/2012/08/12/hospice-is-help/
You wouldn't be letting your mother down, you would be helping her I think.

catdander
Reply To: Is this one of those can't answer questions?

I just want to say hello and that I'm so sorry your parents are going through this.
Certain Spring is right, even though not yank. :wink:
It sounds like your dad really needs some support right now that hospice can give.
I hate that it has to be so cut and dry between treatment and hospice. There should be a way to a smoother transition.

My thoughts are with you and your parents,
Janine

mpinder
Reply To: Is this one of those can't answer questions?

Dear Sleepless,

I'm sorry to hear that your Mom is doing worse. Certainly her symptoms sound concerning for progression of her cancer. It does sound like your Dad is overwhelmed and I would agree with all of the other GRACE members who have positive things to say about hospice. Often, the response of patients and their families is: Why didn't we do this sooner?

It sounds like a family meeting with the oncologist might be in order. I typically like to meet with my patients and their families when making a hospice referral.

All my best to you and your family,
Dr. Pinder

sleepless in jersey
Reply To: Is this one of those can't answer questions?

Thanks CS, CD and Dr. Pinder for the quick response I called her Onc and she's on vacation til Wed. and that's when Mom has her appt. discussed how Dad would like scans and push back appt. a wk, however Doc is not in and if things get real bad than we suggest go to the ER, but were not there yet so we will wait.

I heard from previous posts how wonderful hospice is, but when I spoke to them before, you can not be on any treatment at all except pallative-pain only so her tarceva would have to stop. They also said someone comes into to eval and they decide from there how often you need someone to come, but it would not be all day. If you need all day than you need a aid and that's private pay!

So Mom is back hear with us on the couch watching "the Help" with my husband.

Not looking forward to Onc appt. on Wed. I will tell you that!!!

Sleepless

Dr West
Reply To: Is this one of those can't answer questions?

I'm sorry about all that's happening, but I really think it's important to ask why it's so important to continue the Tarceva when there is so little question that she's not improving on it and is almost certainly getting worse? It really sounds like more support would be incredibly more helpful than more time on an ineffective treatment.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

sleepless in jersey
Reply To: Is this one of those can't answer questions?

Dr. West
Her Onc didn't want to do any further tx, she had explained we have tried everything, however my parents good friend who's the head Rad at another hospital who we give reports/scans to all the time says to give the tarceva a shot the brain mets are soooo small. We didn't know there is 2 different types of MRI's one is extra magnetic and the other is the basic? So a couple of weeks prior the original MRI was at the hospital where it found a couple of tumors and that's when G.knife got sched. after the head piece is placed mom went through the extra magnetic MRI and it picked up on more where the hospital's hadn't so that's why there friend give tarceva a shot as we'll as Boston yea mom only has a 10% shot, but somebody has to be in that 10% so ya know, what were giving it our all.

Mom has her good days and bad days and when there bad there real bad! When I went to visit her yest. at lunch time she was still in her pajamas and curled in fetal position on the couch in a blanket and so so tired, but than I receive a text from Dad around 5:00 would you like to meet us at one of there fav. restaurants and so we did, and she ate, looked good and lasted til about 10:00pm lots of there friends were there and they had a good time. (There friends can't believe what I tell them how she's been and than they look at her and look at me like I have 2 heads) .

Dad and I are very afraid not so much of Wed. Onc appt., but more of when she orders the scans to discuss them, than that maybe it with the tarceva and scans and calling in "H".
Hope to have more nights/days like last night...
Sleepless

laya d.
Reply To: Is this one of those can't answer questions?

Hi Sleepless. . .

I'm so sorry to read about your Mom's situation right now. This all is so very overwhelming - - expecially with regard to your parents' concern as to whether the disease is progressing or not despite being on Tarceva. But, I can add a little bit of our experience here for you in case it is at all relevant. One of my Mom's main complaints any time she has been on Tarceva is fatigue. There is an overall fatigue that she feels, but also a wave of fatigue that comes on and basically wipes her out for a bit (where she has to go lay down and rest). I believe that others who are or have been on Tarceva have reported similar experiences. So, the fact that you saw your Mom on the couch extremely tired and worn out, but then met her for dinner out some hours later doesn't surprise me if the fatigue is Tarceva-related as opposed to progression. Just off the top of my head, I remember having a discussion about this fatigue a few years back here on Grace, and our dear Ned mentioned that he noticed a pattern with his fatigue while on Tarceva, so he switched the time he took it from the morning to bedtime and it really helped him. If your Mom is taking the drug in the morning, maybe you guys can switch to bedtime and see if it helps her.

Anyway, this is not a medical opinion or recommendation obviously - - just a personal observation of my Mom's experience while on Tarceva. If I find the thread where we all discussed this and Ned chimed in, I'll post it here for you.

Looking forward to a further update from you soon. . .

xoxo,
Laya

sleepless in jersey
Reply To: Is this one of those can't answer questions?

Quick update on Mom last Wed. Dad went to bring her coffee and heard her moaning, he found her curled in a ball in pj's moaning, she states her knee gave out and couldn't get up. Dad called me and said she took sleeping meds before bed than woke up and thinks she took 2 more at 5am and that's why she was the way she was. Needless to say finely the sleeping pills/narcotics are out of sight!! Mom was suppose to see Onc that morning and told Dad I was canceling that appt. and would resched.he asked me to come to the house and stay there with her til he got home from work, I did and she was all comfy on the couch and settled in and told her I was going downstairs to do something for Dad and I'll be right back. Well while I was on a 3 way call I heard a baboom than to follow yelling...I ran upstairs to fine she was going to the bathroom didn't tell me and fell in the Kitchen (she said her knee gave out again) and landed backwards on the tile OMG all I thought about is her head was hurting where her craniotomy was. Dad flew home when he heard me yell on the phone (he was one of the 3rd parties on the phone) we didn't need to call 911 thankfully. We gave her motrine, later gave her some yogurt and kept talking to her to make sure no concussion,Dad left and went back to work and I litterally stayed with her at eye site for 6 1/2 hrs til Dad came home.
I went back the next day thurs. and stayed for 8hrs and she did a lot better, but her knee was hurting as well as her head. Got her an appt. at our orthopedest's for fri. morning. Dad brought Mom to my house for her to stay with me and I could get some stuff done here. Doc took an x-ray says its arthritis and would like to see her bone scan report. He called me and she has cancer in the lower extremities as we know and the pain is arthritis, speak to her Onc if it's OK I could offer her cortisone injections 2 to 3 not sure if will help, but worth a shot.
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Sleepless

sleepless in jersey
Reply To: Is this one of those can't answer questions?

Mom did well through the wknd and even went out to dinner to there fancy restaurant they use to go to all the time. I brought her to her Onc appt. yest. explained what happened last week. She asked about the confusion/balance is it worse or the same? Which I think is the same, she said we'll continue the Tarceva no reason to stop it and we'll order her ct and head mri and said that we should also do the spine as well to see any change for the lepto. now were waiting for the call when she is sched.
Just very hard to see her when she is confused like the last couple of days she thinks it's Thanksgiving this thurs.
Brought her for a mani, couldn't do the pedi/mani she was too off balance today and somewhat more confused (good days bad days).

God Bless
Sleepless

Dr West
Reply To: Is this one of those can't answer questions?

Thanks for the update...I'm just sorry to hear that she's having so many problems and that it's so difficult there.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

double trouble
Reply To: Is this one of those can't answer questions?

Goodness, what a time you've had. She is so luck to have you. I've had injections in my wrists and they have worked very well for me. I hope she gets some relief, but that has to be scary that the knee is buckling and causing her to fall. Would some kind of brace help prevent that, I wonder? That might be a question to ask the ortho? Thanks for the update, Sleepless. I hope things get better, and that her tests all come back with good results.

Love,
Debra

catdander
Reply To: Is this one of those can't answer questions?

Oh Sleepless what an awful time your mom and her's are having. I wish there was something I could say or do to help. How terrific it is of your dad to take her out so often and of you to take such an active role in her care.
I hope she continues to enjoy good days and good outings.
Take care of yourself too.

catdander
Reply To: Is this one of those can't answer questions?

Oh Sleepless what an awful time your mom and her's are having. I wish there was something I could say or do to help. How terrific it is of your dad to take her out so often and of you to take such an active role in her care.
I hope she continues to enjoy good days and good outings.
Take care of yourself too.

forherbie
Reply To: Is this one of those can't answer questions?

Sleepless----good your Mom was still able to eat out after such a bad few days. I know your Dad is thankful to have you there to help.
Anne

sleepless in jersey
Reply To: Is this one of those can't answer questions?

Thanks all for your support...Debra, I asked Dad to ask that question re:brace for knee and he said it wouldn't do any good for her. So her option is 2 or 3 cortisone inject. or synvisc (which is a another inject. acts like a lubricant I believe).
Mom doesn't know if she is going to do it or not.

Mean while I had gone to CVS minute clinic and they told me with my immune system down I have shingles (the blisters on my LT side of my abdomen and the itch wow) now I know what Mom was talking about in July when she got it! The nurse practioner is not sure if I caught in enough time that I wouldn't get the zingers that Mom still gets. She put me on Valtrex 3x a day for a week. Also on rogaine for woman per Dermatologist DX with Telogen effluvium. My husband and I could only laugh at me losing my hair and scratching my side I feel like a monkey LOL
It's amazing what stress could do to a body...I probably shouldn't have even wrote this it's nothing to what all are going through!
Ya know I still tell Mom when she's really down...don't they say if there was a big, big jar and if you could put your hand in the jar that had every bodies problems, you would still grab yours??

Moms sched. for ct/head MRI 10/29, 10/31 MRI lumbar (to see if any change re:lepto since no real DX of LBP (Mom cancelled that appt.). 11/1 appt. with Onc to discuss results. I am very very nervous for that appt.
will continue to keep you updated.

God Bless
Sleepless

Dr West
Reply To: Is this one of those can't answer questions?

Thanks for the update, and sorry for what you're going through (it's NOT trivial, by the way). I hope you hear something favorable at her upcoming visit.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

catdander
Reply To: Is this one of those can't answer questions?

Oh Sleepless, Dr. West is right, your problems are not trivial and I hate that your stress has shown itself in such ways. I'm glad you and your husband are laughing, it's great medicine. Right?

I've got your mom, you, and the rest of your family in my thoughts. I hope tomorrow is a better day.
Janine

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