Mom got results of scans - 1245623

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sleepless in jersey
Mom got results of scans - 1245623

I was away all week, Mom had her head MRI on tues (it was one of those extra magnetic MRI'S not the basic one that your average hospital has)
Thurs. was bone/ct scan

Neurosurgeon called me and said there are several new tumors shown that are very small, I asked where are they he said through-out, I than asked how many he said he didn't count. He spoke to the Rad who did the G.knife with him in March they said poss do WBR again or this intrcal chemo therapy. I will call your Onc let her know and repeat MRI in 6 wks. Report is also saying poss leptomengeal.

Onc calls me and wants to know how to present to my parents I don't have very good news for you...
bone scan 2 spots rt arm and lt femur/hip showing poss future fx I asked are they new and she said we never did a bone scan so nothing to compare?? (I was confused and didn't ask her this, but because how did we know when 1st dx she has it in the ribs,pelvis &spine) ct also shows some have grown. So she laid it all on the table our options all what neuro suggested and changing tx to tarceva if anything and if she wanted a lumbar puncture to confirm lepto.

Needless to say how I was how to inform her how to tell my parents and how they were when they got the thurs. night call!! Mom calls it her death sentence phone call :( She is opting no more surgeries, no more needles no more guinea pig let me go in peace!!!

I have been trying very hard to get tissue sent to MGH, however having a difficult time through the whole process and they don't know the latest yet.

Dad called me up and was perky got in the mail report/discs of scans (we always have my friends head rad at another hospital review them) Dad said the report in not that bad yea some grew but by one being 3.7cm to 4cm and the head is showing like almost non readable.
So Mom may consider tarceva. Want to get tissue out immediately to MGH through.
Do we send ROS1 out and get results in 2wks or opt for snap shot and takes up to 4wks and has to be seen?
sleepless

Dr West
Reply To: Mom got results of scans

I'm afraid that in the setting of progression in the brain after prior treatment, and also progression outside of the brain, I don't believe there's likely to be any treatment that is likely to be very effective. There are tests that can be done, but if there is significant progression with multiple new lesions in the brain after prior whole brain radiation and potentially leptomeningeal carcinomatosis, I think it would be a very tall order to find anything that is able to dramatically reverse the process even in the brain.

I'm sorry I don't have a good alternative to suggest.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

gn21
Reply To: Mom got results of scans

Ah sleepless, how accurate yournamemust be for ou at the moment.

This is really tough stuff, for your mum most of all. What a tough decision to make - when is enough enough?

It's like there is always another slim liver of hope offered, in this case tarceva. Given that it cn be well tolerated maybe it is worth a shot?

Gail

catdander
Reply To: Mom got results of scans

sleepless, I don't have words to say how sorry I am for the news you are receiving. Obviously your mom gets to make the call to stop treatment. Remember that she doesn't need any test or needles to try tarceva. I wish you're family strength in the days to come and the decisions made. They will be the right ones.
Peace to you all,
Janine

sleepless in jersey
Reply To: Mom got results of scans

I know I am grasping and grasping real hard...I have put my kids on the burner for the last 18 mos and feel so awful, but I have worked so very hard on helping Mom!
Mom has had a hx of diarrhea (we believe it was from large amts of losengers with aspertame and once stopped much better) also facial issues almost like port wine stain on cheeks, swelling more so when had to take pre-med before contrast so should we assume that if she starts the tarceva it's a given she expect the side effects from tarceva the basic diarrhea & rash?

I don't know if I should continue to push Mom to try the tarceva or even have tissue sent for ROS1, just try it or just let Mom be for the remaining time she has with no meds?
I know what you said Dr. West and value your opinion, but I feel like I am just giving up.

I know ultimately it is Mom's decision and I have to back her with whatever it is, but I just want to make sure she is fully educated and understand it all, that's all!!!

I did see 6th line is carbo/taxol/avastin Onc said very firm not for her she couldn't with stand 2 very strong chemos at this point and avastin with brain tumors oh I am very reluctant to do that, because could have brain bleeding...not an option.

Mom has had a difficult life, but don't get me wrong it's been a good one also from being brought over to Japan in utero because her father in war and Mom and G.ma came back alone (her dad past in war), to her mom remarrying and had 3 more kids and he past of heart attack sleeping in bed next her mom, her blind bros died in 40's of a brain anurism, sister died in 40's of sarcoma of pulmonary artery, mother died copd etc and her baby blind bros (51yr old) in rehab nursing home (took a bad fall in march broke ankle and we find out he was drinking a lot more than any of us knew so detox took place which in return caused coding a cple of times in the hospital etc).
Her 1 bros who past one of his fav songs/singer Billy Joel "the good die young" humm
Sleepless

craig
craig's picture
Reply To: Mom got results of scans

Sleepless,

Just adding a comment here beyond what we discussed privately.

If there isn't much chance of finding a driving mutation with a therapeutic drug in a clinical trial that she could be eligible, knowing the name of the enemy might be more comforting than useful. Many of us with lung cancer yearn to know why we got it and what specificially it is, even if we can't do much about it. Speaking for myself, if I were in your mom's situtation and *if* I had tissue left over from a prior biopsy, I would probably have it tested, but I wouldn't see the point of getting another biopsy procedure done if the tissue I had wasn't sufficient. I bet most people are not as driven to know more about their cancer as I am, though.

I'm am very sorry your mom's test results didn't offer better news. (FYI, I'll try to 'ping' Dr. Shaw with an email of my own to see if she got your email contact attempt.)

Best hopes,

Craig

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

catdander
Reply To: Mom got results of scans

Sleepless, I have to comment on your comment, "but I feel like I am just giving up". There is a thread and an article that is very difficult to read but in your situation it may be more soothing than hurtful. You decide.

This will take you to a blog Dr. West wrote about the thread and more. It has links to the thread and article. and plenty of leeway for you to back out before it gets to be too much. Though I must say I don't think there is much in it that wouldn't help more than hurt at a time like this. http://cancergrace.org/cancer-treatments/2010/07/30/is-palliative-care-g...

You, we all will, stop hope that anti cancer treatment will help give quality of life, but there is more to hope for. I can't imagine what it's like for our loved ones who have lung cancer but I do know that I want to know when it's time to stop anti cancer treatment and focus solely on comfort. It's some of my most worrisome thoughts; how will I know. I won't want to think I was giving up. I went through this with my mom 3 months before D was diagnosed and very happy she was without tubes and meters in her last days.

You will remain in my thoughts,
Janine

PS That song, I had to wiki it to make sure and yes it came out at a particularly difficult time. A year after it came out my boyfriend and a child of a good friend both died. The song became very poignant.

laya d.
Reply To: Mom got results of scans

Hi sleepless. . .

I'm so sorry to read of the progression of your Mom's disease. This is so darn hard and unfair!

Laya

petunia
Reply To: Mom got results of scans

I am so very sorry that you did not get better results. Know that there are many good thoughts and prayers and vibes sent to you and your family.

sleepless in jersey
Reply To: Mom got results of scans

Thank you all for your love and kind words!

It was very hard at yest. appt. at the Onc appt., however she told her I'm not ready to throw the towel in, so where do we go from here? So here we go 1) Neurology on thurs. discuss poss lepto and meds 2) another ct w/out contrast of rt arm & lt femur/pelvis to see how extensive if Rads are needed or God for bid need to see orthopedic for poss surgery for a rod to be placed (don't worry Mom will not go that far, ortho surg that is 3) Onc also wants a lumbar puncture (not sure if Mom will do that either, heard it could be not so bad if you have the right person, if not it could be umm) 4) got script for Tarceva starting at 100mg and after a mos. go to 150mg. (with a script of Lomodil in case)Than we'll talk after.

Onc wants to know how you want to address the brain-Mom said NO to intracal chemo therapy and was not opting to 2nd time around of WBR it kind of got pushed at way side for now...

Spoke to Dr. Shaws nurse last night, I gave her the latest info. she was going to see what Doc want's to do now if anything and will get back to me this morning. She did give me some good info. she said do we have a Bridge program (its not hospice, it's a symptom mngmt prog. specialized training, than could switch to hospice, but it's a familiar face when the time comes and not so bad for the patient).

She also informed me on the intracal chemo and the lumbar puncture. Amazing Lady!!!!
God Bless
Sleepless

certain spring
Reply To: Mom got results of scans

I am really sorry you and your mum are having to deal with all this. How is she feeling?
I believe leptomeningeal disease can be hard to diagnose from a scan, and sometimes difficult to distinguish from other changes in the brain. Hence the lumbar puncture I guess. Obviously this is a very personal choice but I would want the oncologist to make a clear case as to how a lumbar puncture would make a difference in how she treats your mother.
I'm glad you have the Bridge program as a backstop - sounds reassuring and I totally agree about the value of the familiar face.

craig
craig's picture
Reply To: Mom got results of scans

Thanks for the update. I'm glad to hear the nurse was very helpful. I had not heard of a "bridge" program before; that sounds very appealing for those who prefer not to be prematurely classified into hospice (and the limitations on treatment that too often & somtimes unknowingly go along with that classification).

Best hopes,

Craig

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

laya d.
Reply To: Mom got results of scans

Best of luck to your Mom. . .She (and you) remains in my thoughts. . .

Laya

catdander
Reply To: Mom got results of scans

Thank you so much for the update. CS has a good point about the lumbar puncture and what effects it would have on treatment. I didn't know about he bridge program either except that when studied in trials was very very helpful. So I'm happy to hear that it is being offered. Nurses are wonderful resources.
I hope your mom responds well to tarceva. My thoughts will be for that,
Janine

marisa93
Reply To: Mom got results of scans

Hi sleepless,

I just want to send my thoughts and best wishes to your mom, you, and family. I know these are tough times and I wish you all peace and comfort.

Lisa

Dr West
Reply To: Mom got results of scans

I think the value of a lumbar puncture is only in whether the results from it would change management, though some people might value "just knowing". As certain spring mentioned, leptomeningeal carcinomatosis is hard to diagnose from a scan, but one additional problem is that the lumbar punctures can give a "false negative" result pretty commonly even when someone really does have leptomeningeal carcinomatosis. Many people wouldn't be inclined to give intrathecal chemotherapy if there is room for doubt about there being leptomeningeal carcinomatosis. But if your mother isn't going to go down that road anyway, it's fair to clarify what would be gained by doing an additional diagnostic test.

I understand the reluctance to stop treatment. My only concern is that there are plenty of people who do treatment well beyond the point where it's helpful, and to the point where it's absolutely harmful, while also keeping everyone from focusing sufficiently on the things that can be improved, such as a patient's symptoms. It's hard to serve two masters by worrying about hitting the cancer again and again or attending to the person and how they're feeling. Just be careful that treatment isn't being done for the sake of everyone but the patient.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

sleepless in jersey
Reply To: Mom got results of scans

Update...I spoke with Dr. Shaw's nurse (Love her and never met her) however she spoke to Dr.Shaw re:Mom's results of scans w/out seeing any reports etc she said she no longer could enroll in any of there trials, the criteria is no lepto/carcinomatis even if it suspects and not confirmed. She said she would need to have more than on lumbar done to confirm do to the false neg you could get from it.
If anything changes from Neuro appt. today let her know.

She also went over great lenghts of her options like Doc's did, but gave more nurse info than the Doc's do (sorry Doc, but I think you know what I am talking about).

One of her many views is that why not give tarceva a go if the Onc is willing than try even though it's a 10% success rate somebody is in the 10% and Mom could be? Now I believe she said as well it doe's go to the brain as well but not full strenght (I assume like the other chemos)
So I think Mom will do tarceva and hope not much side effects that she'll say enough is enough and hope for the best like the rest!

Unfortunetly I wont be able to go to visit with parents today at 11, but sister in law is, is there anything anybody could think what I should have her ask? I kind of said listen to what she has to say and the questions will arise (she is a medical asst has somewhat sense of quest)?

God Bless
sleepless

brigitte
Reply To: Mom got results of scans

sleepless in jersey - So sorry for what you and your Mom are going through. My father has only recently been diagnosed and being treated, but the when to stop treatment has been bugging me for a while.

He seems to have a phobia of doctors and hospitals....always has had so having to go and having infusions etc is quite traumatic for him.My friends Mother passed away on the 25th May. She had been undergoing chemo until about a week before she passed, when she said she did not want to go for chemo that day as she felt just too weak.She passed about 5 days later. She went through so much treatment and was having weekly chemo and felt so weak and ill after each one.
After seeing this happen, I do not want my father to take that same path. If he wants to go for treatment and really has a chance then I of course support this wholeheartedly, but if he suffers so much that he has only a few good days before each treatment and then his prognosis is only improved by a month or 2 I do not think it would be worth it for him knowing how he feels.
My Dad leaves most of the decisions to me and does not actively participate in his examinations or ask questions of the oncologist, so I end up doing it....he does not understand exactly what is discussed as he has no clue about medical issues as he would never discuss anything medical because of his phobia about hospitals and illness.I have been giving him pep talks to continue treatment, however I do not want him to spend whatever time he has left suffering through treatments which wont make much of a difference time wise. How to know when that point comes is what is worrying me.

Will I know? Will he know? Will the oncologist sort of guess and tell us? My friends Moms oncologist did not seem to know or if he did why was she still having chemo. Your Mom seems like a fighter and seems to know exactly what she wants. All the best, Brigitte

Dr West
Reply To: Mom got results of scans

In particular, the "pulsed" schedule of giving Tarceva, which is 4 pills at a time once every 4 days, instead of one pill every day, has been associated with some good results for patients with leptomeningeal carcinomatosis:

http://cancergrace.org/lung/2010/01/31/an-effective-treatment-for-some-p...

At the pulsed schedule, the blood levels likely get high enough to reach meaningful levels in the cerebrospinal fluid that bathes the brain and spinal cord.

I am pretty optimistic about this approach for patients with leptomeningeal disease and an EGFR mutation, but less confident it will be helpful for someone who doesn't have an EGFR mutation. Still, it's fair to say that there's relatively little to lose by trying an oral therapy that is FDA approved already for previously treated patients with advanced NSCLC.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

sleepless in jersey
Reply To: Mom got results of scans

Thats interesting to know that option...thanks for that!

Mom went to neuro yest and now is sched. for Lumbar tap, however doc wouldn't say what we would do if positive, we'll discuss it when we get the results huummmm I will have to call and speak with the person Dad said who to ask for, but aren't the options the same as what onc told us?
WBR/INTHRECAL CHEMO are there anything else, because to put her through a tap that she refuses to do those 2 options why put her through that? I wasn't there so I would have been more persistant. The other part that has mom and I worriedsome is it's the first time leaving the same hospital system (which onc offered it to us, because closer and the neuro is married to one of there onc's in the grp) but this particular hospital does not have a very good reputation for many years and was saved from being closed.
Thanks again in advance for all of your help.
sleepless

catdander
Reply To: Mom got results of scans

Hi sleepless, How are you? I know you probably don't know the answer to that question but I thought I'd point it out. You know, eat, sleep, hug the nearest loved one...

I think Dr. West's answer is just above your post. Pulsed tarceva.

You are in my thoughts,
Janine

certain spring
Reply To: Mom got results of scans

Hi Sleepless, sorry you are going through all this.
I think the point Dr West was making was that your mother could try Tarceva (at a higher dose than normal, every four days), as that sometimes works for patients with leptomeningeal disease, assuming that is indeed the correct diagnosis.
I really hope the lumbar puncture does not cause your mother too much discomfort. I believe it can be painful, and that is one reason why I was querying how useful it is really going to be. She could have the Tarceva anyway, as you discussed with the oncologist
I read Brigitte's post and I agree with her that it's difficult to know when to stop. Your mother's wishes must come first, of course. But I saw my own mother subjected to some hard treatments that did not prolong her life by more than a few weeks, and which meant she ended up dying in hospital, rather than at home which is what she wanted. That's twenty years ago and I still feel bad about it. So that has influenced my own outlook, now that I have cancer too. All best.

Dr West
Reply To: Mom got results of scans

Thanks to Janine and certain spring for helping clarify my discussion points. I don't really have other alternatives to offer.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

sleepless in jersey
Reply To: Mom got results of scans

It has been so really hard and my poor Mom and Dad! I can't begin to clarify how very confused she gets, than again I have a bit a go gave some examples of whats been going on.
Mom is sched. for LP on Tues., but I think were canceling, I spoke to the very nice Neuro yest. and a greed there a handful of false/neg and that's why she asked in her orders that she want's extra cancer fluid so that doesn't occur. I also asked that if it is positive what other options do you have to offer than the 2 given to us already and she said that's between you and the Onc, I only DX and she treats.
I spoke to Onc again and she said we are only doing this to DX and to know what we are dealing with.
Both parties no there is a great possibility of her canceling!

I am bring Mom on Mon. for a ct of LT pelvis, the Onc is concerned that it's a weight bearing area and 2 wks a go ct w/ contrast showed a problem so they really want to look at that area closely, in the mean time we also have an appt. on Tues. with the Rad for consult for the RT shoulder that has been on/off pain since prior DX to radiate that even though no ct was fully just on that area?
Mom still only takes advil for pain can you imagine and maybe a couple of times percocet.
She has the Tarceva and has not started taking it, I don't know why either. I am waiting to discuss with the Onc re: poss pulsed tarceva on her thoughts, hopefully on Monday.

My opinion I don't think it's worth doing the LP it's not going to change anything, but now you have another DX so I think the decision is to try tarceva or not? I knew that the Topotecan unfortunatly was not going to work (I had my quest. with you all on that and the Onc) well it didn't and we knew in 2 mos. so I feel we will know in 2 mos. or less as well if to continue.
Mom knows and has said this is no quality of life how she is right now, but she is scared and wants to see her 1st grand daughter get her license in June (my daughter).
Sleepless

certain spring
Reply To: Mom got results of scans

I am sorry you and your parents are having such a difficult time. If you can gently encourage your mother to try the Tarceva, there's a chance that it might actually do some good. Or perhaps she doesn't want to take any more medication? Good luck on Monday.

sleepless in jersey
Reply To: Mom got results of scans

Well just hung up with Dad and they went for a quick bite to eat last night (which she is still able to do on most fri/sat) and ran into there good friend who is a head Rad at another hospital than where Mom is being treated and Dad asked would you do the LP" HE POINTED RIGHT IN DAD'S FACE AND SAID ABSOLUTELY NOT" in away Dad said I knew not to ask any further questions, never saw him like that before. So I will be canceling the appt. on Tues. for LP.
sleepless

catdander
Reply To: Mom got results of scans

Just to let you know I'm keeping you in my thoughts.
Will your mom try tarceva?
Janine

sleepless in jersey
Reply To: Mom got results of scans

Thanks CD. Yes she will start Tarceva, however not sure at the prescription written or what Dr.West had brought to the forum, waiting to speak to her on Monday so she could start Tues..
God Bless
sleepless

catdander
Reply To: Mom got results of scans

Just FYI, because I don't want you to find out later, it will very likely take longing than just a day to get the script filled, unless you have a specialty pharmacy that has it in stock where you can pick up the drug. Usually it is sent through the mail.
D had his come through the mail until his insurance changed specialty pharms (your regular pharm doesn't carry it) at which time I found they were down the street so I asked about picking it up. I got the idea though that most of their business to the general public was done through the mail.

Keeping you in my thoughts and hopes,
Janine

Dr West
Reply To: Mom got results of scans

Yes, I routinely tell my patients that it will often take a week or so to receive the actual drug, since there is often a bit of a process involved with approval, including some back and forth paperwork to ensure that a patient is an appropriate candidate for Tarceva (erlotinib).

It's also worth just noting that the "pulsed" schedule of 600 mg by mouth once every four days uses the same amount of drug as the standard 150 mg daily schedule, so it's potentially possible to do the pulsed schedule even if the prescription is written as the standard dose and schedule.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

sleepless in jersey
Reply To: Mom got results of scans

Mom has the script, believe it or not our local CVS. It was dropped off last Monday and Wednesday if was picked up, but for what ever reason like I mentioned earlier don't know why she didn't start it.
The Onc wrote it for 100mg she said she likes to start her patients on the first mos. 100mg than the next mos. 150mg gradually, because it could be hard? So by her taking the pulsed sched. it would only be 400mg and not the 600mg of how it is written and been filled. Mom wants to start tomorrow, but Dad doesn't know how to give it now at the 100mg daily for a mos. or would like to give the pulsed he likes that idea, however she would only be taking 400mg not the 600mg and would be off on the count by the end of mos I believe right?
We'll, off we go this morning for ct of lt pelvis (weight bearing bone Onc scared looks close to fracturing she says) and consult with Rad tomorrow morning.

God Bless
sleepless

certain spring
Reply To: Mom got results of scans

I hope I'm not speaking out of turn, Sleepless, but to be honest I think the scheduling is less important than getting your mother to start the Tarceva. If the oncologist originally wrote it up for 100mg, couldn't your mum just begin taking it at that dose? Then the doctor could adjust the dose/timing as he/she thinks best. I know your mother has a lot going on with hospital appointments, but if these were my parents I would be trying to persuade her to start taking it without delay, as it might just do some good.

sleepless in jersey
Reply To: Mom got results of scans

CS Mom should have started it you are absolutely correct, like I said earlier though Dad doesn't know why he didn't get her started. I have to take baby steps with my Dad, I can't push him and have to work sometimes at his pace as much as it bothers me. It's his best friend they have each other for the last 45 yrs and he has to feel like he's in control sometimes, but he did say he is starting tomorrow no matter what.

Thanks for being my angel on my shoulder and keeping me on track in case I just lose my thinking, I have so much going on right as we all do! Not that you are interested, but my daughter just had major knee surgery, Uncle is finally coming home from nursing home since the fall in March (bad news that he is he has met his 100 days of medicare), whats all going on with Mom and sister in law going for all kinds of breast procedures on Fri. may have breast cancer (her mother past from breast ca and her g.ma had it as well)
I feel like I am becoming a wine-a-holic and will have to hold my hand up and introduce my self in a meeting lately my God when does it end? They say you don't have enough character is that what they say?

Trying to make light of it all...thanks again.
talk soon
sleepless

certain spring
Reply To: Mom got results of scans

You are doing brilliantly. I completely understand that it is a delicate situation with your parents. I am just nervous because cancer can move fast.
If it is any consolation, I spent Friday night in the ER with my 81-year-old father, who had a head injury from a fall, trying to persuade him not to discharge himself and stagger out into the night. He turned out to be fine but it did not stop him demanding to be taken home every 4 minutes. So I have trouble practising what I preach!

catdander
Reply To: Mom got results of scans

To sleepless and cs, You're both doing brilliantly. My goodness, you 2 with strong willed parents, who would have guessed. :wink:
I completely understand what you mean by letting your dad have some control; it's a difficult thing for your spouse/best friend to be in such a delicate situation with so little or no control of any of it. You're good to let him have that. And cs is right, give him a nudge to start at least the 100mg. My guess is as a daughter you have ways of nudging that look a lot like your dad making the decisions.

JimC
Reply To: Mom got results of scans

Sleepless,

Just to follow up on what Dr. West said, my wife's onc wrote her prescription for 150 mg/day, even though the plan was for pulsed dosing of 600 mg every four days. In your mom's case, even if she took 400 mg every four days, it would achieve the purpose sought by pulsing - increasing the amount of tarceva that reaches the cerebrospinal fluid. I would think that if your mom's onc wanted to increase the pulsed dosage to 600 mg, he could simply write a new scrip for the standard 150 mg/day dose.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

Dr West
Reply To: Mom got results of scans

Right. None of this is especially well studied. I don't know how critical the dose really is.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

sleepless in jersey
Reply To: Mom got results of scans

Thanks as always for all your support and help, boy do I need it! Yea I have lots of friends but it's not the same as you all!

WOW CS that couldn't have been easy that's for sure on Fri.

Well I am so glad I canceled Mom's LP for today, we don't need it on a piece of paper to just say she has Lepto. I brought Mom to her CT yest. besides that she almost fell getting to the bottom of the landing of the foyer, we sit in the waiting room for CT and she says why are we here I don't understand why do we need a consult? I explained why we are there, than 20 mins. later she just comes out and says why are we here?
She is getting more confused and feisty by the week.

On way home from the Hospital Onc called, she wanted to discuss why we canceled LP and when are we sched. for consult for Rad's, also wanted to go over the Tarceva as to the poss new dosing (pulsed) has she heard of it and her thoughts? She had never heard of it was not interested in any of it thought it was a large amt since I was giving 100mg, because of how hard it is on patients and gradually go up (I have to say it was the first time I ever had her talk a little firm this time, she is a very pretty, petite well dressed Asian Doc)
I was a little taken back, I told her you know me always looking something online or talking to somebody and discussing it with you always and have never done anything without your approval and her voice lightened up and you could see the smile through the BT in the car and Mom heard which made us feel better. End result she is starting it now as we speak at the 100mg, Dad said lets get her going see how she does with it for 2 wks than switch to the 400mg if she's doing OK but lets play it by ear. How Dad and I see it, it's worth a shot, because we see how things are going now.
Will keep you informed.
God Bless
Sleepless

certain spring
Reply To: Mom got results of scans

Well done Sleepless - you sound like a true diplomat, turning around a potentially sticky situation. And you got a result!

craig
craig's picture
Reply To: Mom got results of scans

Sleepless,

Nicely managed, there.

BTW, my Dad has had Transient Global Amnesia a couple of times and it was more acute than what you described. Temporarily, until the middle of the night, he could not make any new memories. Every 60 seconds he'd start again: "I think I'm beginning to get my bearings . . . I'm in the hospital? . . . Another episode of TGA? . . . I live alone now? . . .". (then he'd get very upset that he couldn't recall my Mom's death). . . . I'd explain . . . then a pause . . . Then he'd start again exactly the same. I got good at distracting him from thinking about that upsetting subject, but my voice was getting hoarse from repeating myself. I finally wrote an explanation on a pad of paper an directed his attention to read it. He'd read it from top to bottom, saying "uh huh" multiple time as he read to the bottom . . . Then he'd look up thinking . . . Then look down and see the pad of paper and start reading anew . . . And so on and so on maybe hundreds of times. Worked like a charm until lights-out bedtime in his hospital - then we spoke in the dark until he got sleepy. He started to come out of it maybe 3am.

Best hopes,

Craig in PA

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

catdander
Reply To: Mom got results of scans

Well done sleepless. My fingers are crossed and my hopes are high.
Don't forget to be proactive with skin moisturizing with a very basic non alcohol non scented lotion or oil.

laya d.
Reply To: Mom got results of scans

Good job, Sleepless. . .And, best of luck to your Mom.

Laya

sleepless in jersey
Reply To: Mom got results of scans

Thanks all.
Craig I don't know what to say, patience a lot of patience. What a great son you are and all that you are going through.
CD you know, kind of funny, the person at the Rad's office called me on Monday to go over everything and to bring all bottles of anything she takes by mouth and not to just write them down etc so I ask what kind of a burn could she expect and a couple of others since she knew I wasn't going to be able to make the appt. she said o'h no that was of the past and the Doctor will check her once a week and if he notices a little pink he will make adjustments etc... yest. Dad comes home with some aloe cream/jell and special deoderant. She an hr appt. just consult that's it...they did another ct scan of the same area as the Hospital on Mon. and number her in 2 areas and tattooed her as well (why would you not want to prep the family what to expect) and scheduled for the next 15 days for Rad's. After Rad's they want her to use a cane for about 3 mos.,because the hip needs sometime to regenerate bone after the TX.

Whatever happened to her yest. morning took a long time, but she finally shook out of that, hopefully it was just Lunesta that she took like 3am and had that medicine head.

We were going to do a Birthday lunch for her tomorrow, however she has a date with the Radiologist at 12:00 at least we have the family dinner on Saturday.
God Bless
Sleepless

catdander
Reply To: Mom got results of scans

Sleepless, It sounds like she got prepped for radiation treatment. To her hip? D has gone through that twice and both times the one appointment for prep took an hour or more but the treatments never took more than a few minutes. Is that what's happening with your mom? If so she may only need to be at the center for half an hour. Especially if you tell them she needs to get to her own birthday party. :wink: If so I'd call today so they can make arrangements

D also had some burning on the skin and should have taken better care of it the first time around. It wasn't at all a big deal though. aloe sounds good. Make sure you and your dad know what is ok to use during the actual treatment. Some products cause like a shielding affect to the beams of radiation and should not be used just before treatment.

best best

sleepless in jersey
Reply To: Mom got results of scans

CD yes it was only a consult, but turned into a prep as well. They did say it will take about 20 mins. or so for the next 15 TX's. Mom never had any pain what so ever in her hips, I have to ask per Dad why did she wake up this morning in such pain with both hips after yest. visit? I'm thinking they had to fit her kind of like the catchers mitt when she had the WBR and just pushed a bit to much??

We are not doing any Birthday lunch tomorrow since we'll be with the Rad and she's not up to it anyways, she said at my age it doesn't matter. We are celebrating on Sat. with the family.

Keep you informed
God Bless
Sleepless

catdander
Reply To: Mom got results of scans

Gottcha.

They may not want to take any chances with a fracture in the hip so decided to move forward with that radiation. I think it makes since.

Dr West
Reply To: Mom got results of scans

Right...they sometimes do radiation for pain issues, but they would also do it to prevent a worse problem in a weight-bearing bone at risk for a bad break if treatment isn't done promptly.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

sleepless in jersey
Reply To: Mom got results of scans

Mom's trucking along so far so good...

Onc called and left message on my cell the other day that I reviewed Mom's ct and again I really think she needs to see a Orthopedic for her hip to see what he thinks about placing a pin in.

Is this crazy of us not wanting to even go for the consult? We feel why, shes doing the rads/tarceva and she canceled the LP why do a consult if your not going to follow with surgery? Me personally I don't understand.

Enjoy the rest of your weekend all
God Bless
Sleepless

catdander
Reply To: Mom got results of scans

Hi Sleepless, It's really good to hear your mom is trucking right along. I wish I had some insight on the hip issue. I suspect the onc feels the benefits of placing a pin outweighs the risk for surgery. We don't have an ortho surgeon on hand for comment. But that's assuming your mom will agree to any of it.
I'm keeping you in my thoughts, keep us posted,
CD

Dr West
Reply To: Mom got results of scans

There's a difference between placing a pin to stabilize things and doing a big hip replacement surgery. I think if placing a pin could prevent a catastrophic hip fracture, which would lead to pain and probably permanent immobility, it's well worth looking into. Tarceva and radiation are not as reliable a way to prevent a fracture if the hip is very structurally compromised.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

sleepless in jersey
Reply To: Mom got results of scans

Just thought I would give a little update on Mom...Thankfully still trucking a long going to Rad's, had 4 TX's so far. I have to call Dad later this evening and kind of clarify his cell call yest. that when they had there appt. with Radiologist after her TX had explained that now with you on the Tarceva we are cutting you back on Rad's from 15 days to 13 days (Mom just said but there going to up the dose as if your getting 15 days??) Also had noticed she is getting a bit of a facial dry/rash like dry patches with a pimple or so. So Radiologist to a look at the rest of her body to see any further rashes, but nothing.

Dad had safety bars placed in bathroom yest. as well as in the shower and next to toilet (Mom's not happy about it, but it is what it is) They also need to get a cane Rad enforced it again, any quick move or anything could cause FX of hip. Dad also discussed about the pin being placed etc and Rad said that's to late if you were to do that it would have been done before TX they seem to have missed that part of the information.

I haven't been going to the last I think 3 different appt. that I better rearrange things that I have going on, because I'm left with questions that they can't answer for me or didn't ask the Doc this.

Hope everyone is trying to stay cool and for you Jersey peeps stay out of the jersey shore now with 22 beaches with BACTERIA they say from the run off from the storm!
Stay well & God Bless
Sleepless

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