I'm sure your local drugstore has canes, but there are "fashionable" ones, too, e.g., http://fashionablecanes.com . I bought a couple of good-looking ones from them years ago when I having some back pain and wanted to lighten the strain on my back to speed recovery.
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)
OK I found out that the Tarceva has nothing to do with the rad's as to why she went from 15 to 10 and up the dose...the insurance was only paying for 10, just like with the WBR the same thing happened.
I hope Mom gets relief soon on her shoulder it's been 6 tx's already.
I can't seem to locate a bridge program like they have in Boston. Where it's the same people from home care that when that time comes it's the same faces familiar faces, but there services would be different.
I did call a agency/company that have home care than( I think )it's the same agency when it's time to switch over it's different people though. I explained it to Dad and he explained it to Mom and she blew it off, so I asked him to reintroduce it again, because were going to see the Onc on Mon. and we would need a script for them to pre-autherize.
Onc wants to do blood work a long with reg visit on Mon. I had seen somewhere there is blood levels that could be checked for her poss Lepto is that true and are they accurate?
Also is it such a bad request the Neurosurgeon had told me he wants her head MRI to be repeated in 6 wks, We had rented a big house for all of us in Lake George, NY for a long weekend. I would like to push it back the MRI 3wks, I want her and all of us to enjoy this trip and make it one hell of a memorable weekend?!
Hi sleepless, I hope your mom gets some relief soon. Radiation can help pretty quickly but also can take some time. It continues to work for weeks afterward. How is her hip?
There are no blood tests for lepto, at least that has been proven effective so a blood test that suggests yes or no is just a guess and not very helpful.
I'm sorry you aren't finding the Bridge program where you are. We certainly don't have it Birmingham. The have proven to be of significant benefit.
Why see the neurosurgeon after the trip instead of 3 weeks before, half again as long from the time the surgeon thought best. A question in return is what if there was cancer activity in the brain. Are there options for what the surgeon may find?
Let's see what input Dr. West has this evening.
I really don't want to second guess the recommendation of the neurosurgeon directly involved. I think if you want to change the time line of the scan, it would be most appropriate to discuss your request with the doctor who is ordering the follow-up scan. He may be fine with changing the timing, or he can explain why that interval is important.
As for the bridge program, it's definitely a problem that it's a very good idea that isn't as widely available as we'd like. I don't have a good answer, since there are probably many areas where such a service just doesn't exist yet.
Dr. Howard (Jack) West
Associate Clinical Professor
City of Hope Cancer Center
Founder & President
Global Resource for Advancing
Definitely worth having a chat with the hospital. Sometimes these time-frames are just routine ("Repeat in six weeks".. "Re-scan in six months"), and can be easily altered. Or the neuro-surgeon may have a particular reason, as Dr West says. I would tell them about your planned weekend (sounds great by the way), and you might find they try to accommodate you.
sleepless - -
As you know, I'm not a doctor here - - but my Mom's experience has been that her docs are more than accomodating with scans/treatment (other than emergency ones, of course) when there are family functions/trips, etc., going on. Just ask the doc to push the MRI date forward unless he or she thinks that there is a compelling reason to keep it as is. . .
Hello all~ Mom had Onc appt. yest. and she wrote a script for 150mg Tarceva for when she finished the100mg dose. Would like her to start the Zametta or willing to have her start the xgavia (sorry if spelt wrong) concerned, has been off for awhile and would like her on something. Xgavia being new she wanted to wait a bit, since Mom has been having dental issues, Onc is willing to change it up.
Blood work monthly to check organs.
I put call into Neurosurgeon on post-poning head MRI and his nurse said she would discuss with him and get back to me (she said no dictation was even done so let me do some work) I guess he's a little behind, was done in mid July.
Dad tried again on Sat. re:home care. Mom wanted no part. I tried again yest. and explained how it works and she was not interested so Dad said he just got paper work on it from the insurance company and was going to go over it with her again...were crossing our fingers!
Like I have mentioned in the past she has quite a bit of feistiness in her now or should I say no filter anymore (oh boy, I should have buns of steel now a days).
Last day of Rad's is tomorrow and has relief with shoulder thankfully.
Will continue to keep you all updated.
PS-My 47 yr old husband is now sched. for a knee replacement next mos. God help me...LOL
I'm sorry there's such an overwhelming amount on your plate. For what it's worth, I really think the bone medications -- Zometa (zoledronic acid) or XGEVA (denosumab) -- are small potatoes in the scheme of things. Fine to consider, but worth being wary about in someone with dental issues, but also probably appropriate to relegate to a back burner concern when there are so many issues to tackle.
I agree Dr.West! Mom still hasn't been back to the Dentist to take care of her mouthful of cavities yet. I brought it up to Dad would you like me to make the appt.'s and bring her he said now is not a good time, so I let it go and still don't know what that meant. Like I have said Mom is one who went to peri/ dentist alternating three mos. for oh gosh so many years and to not want to go at all. Is it just another Doctor and picking her battles?
Since she wont try any antidepressants that the Onc wanted her to try a couple of mos. ago and being so feisty lately do you think trying to find a cancer support group at one of our local hospitals would help? I don't think in all honesty she would go if I told her what it was (I prob would have to tell a tiny white lie to get her there) I just want to try to make her feel a little better.
Dad approached me on Monday and said I probably shouldn't be telling you this, but we discussed were going to make an appt. at the funeral home and get everything arranged....He said he made it sound not so bad for her that he'll do it as well so the kids don't have to deal with it later for me too. My heart weighs a ton and now I have the visuals of her etc and can't stop!
Poor Sleepless, this is tough on you. And on your dad.
When you say feisty - you mean your mum is being argumentative? bad-tempered?
It's interesting that she is prepared to discuss funeral arrangements but not home care. That doesn't quite make sense to me. Is it the idea of having strangers coming to her house that bothers her, do you think?
Feisty...Radiology wants her to wear supportive shoes not sandals with no backing etc so I make her wear like mary jane shoes (cute little like ballerina shoes she has at least her whole foot is in a shoe since I cant entertain the idea of a sneaker to her. So when I bring her to tx I have to enforce her to wear them and I get the nasty look. We went to Onc on Monday and the first thing the Onc said I love the shoes and Mom looks at me than Onc looks at me...Mom says I know when I will have a good day or a bad day if my daughter is bringing me it's a bad day because she makes me wear these and if my husband brings me I could wear my sandals. So I have to explain to the Onc whats up and she gives me the look like she knows whats happening. Or when she trips or scuffs her foot because she wears those flip flops or whatever I go to grab her or something so she doesn't fall and she gives me the nasty look again and says" would you stop"! Or before they were getting ready to go to there grandaughter's Birthday celebration on Sunday, Dad had noticed she had gone to the bathroom a couple of times in a short period so he asked are you OK...she snapped at him (He just thought maybe she may need some lomotil or something to help her in case she had it). I could go on and on, but I think you got it now.
If Mom could see herself right now she would be very upset from not really caring on how she looks, to chomping on gum like a...or just how she talks to Dad.
I don't understand it either re:home care/arrangements. So maybe if I could do the support thing that may help? I don't think its the stranger thing, because that's my father not her and Dad wants it.
Dad said she sits in the living room all day in her chair and stares out the window and he says why don't I get you a big puzzle or big writing magazines instead of just looking out the window and she says nothing so he says what are you thinking about while you stare all day she says when I'm going to die & how?
Arrgh. I can see why the oncologist thought anti-depressants might help.
I suppose there are lots of good explanations - including the disease in the brain - as to why your mum might be behaving like this, why she's bad-tempered and slightly paranoid. But the bit about staring out of the window wondering when am I going to die and how? That could be me. I do that a lot.
I suspect you'll get a dusty answer if you try and get her into a support group. If you asked her what would help, what would she say? She sounds like a lady who knows her own mind!
You're doing a great job of looking after her in very difficult circumstances.
Hello Sleepless...I hope you are alright. We've not heard from you in a while and hoped to hear an update.
Thinking of you,
Sorry I haven't posted, but have been online checking to make sure all is doing OK. Have been running crazy and feel like it takes so long for me to put my thoughts properly/thoughtfully together to put online, that I am just guilty for not just sending out a hello to buds...sorry!
But Mom is holding her for now YUUUUUUUP that's right! (do I sound like the show storage wars LOL). Yea she is still having shoulder pain, but it's on/off, finished rads 2 wks ago tomm it will be takes the oxycoden 2 at a time when needed and hip is still the same no discomfort at all.
She still has her bouts of confusion, but I believe they are a lot worse when she really has a lack of sleep. We all know sleep is something of the past oh about 20 mos. a go.
The time is coming for the LK George trip 9/15 (the count down) and she is still looking forward to it (the trip the Onc suggested to cancel do to the poss. lepto) God willing we make all make it there, you all will be announced in our cheers :) well, my cancergrace family I thank you all....!!
Hi Sleepless, so good to get an update! Holding your own says a lot these days...right? I'm so glad to hear your mom is holding her own. Did the neurosurgeon rule out a stroke as an explanation for her confusion? Who would have thought we'd think a stroke would be a good thing? Things have changed. When D was in the throws of post surgery, chemo, radiation, pain, pain meds, dying from cancer, he was often so confused I couldn't believe he was serious. I wonder sometimes if we take into consideration everything the brain has to sort when going through this process.
I think you will all have a great trip!
Sleepless, I'm traveling so using a very small "smartphone". Just want to say I understand "fiesty" and how your mom feels about giving up little, and big, things that are important to her. Wishing you all the best.
CD No stroke, Neurosurgeon said the report read poss. lepto ( a lot more little tumors grew in the brain from last MRI) so his suggestions was WBR a 2nd time and Inthrathecal chemo and speak to Onc about new TX which she has. Mom chose not to have spinal to confirm DX of lepto, because TX would not change and spinal's are not 100% accurate.So they all are assuming it's lepto. Mom had WBR once won't do it again, she's not interested in chemo thru the brain, Onc said that's it with chemo we have tried 5 different chemo's, we'll give Tarceva a shot even though she is triple neg for gene mutation, because Mom's not ready to throw the towel in yet.
Right, I did remember most of that but of course that would be one of the first things she'd rule out, I just forgot.
I must say I'm impressed with your mom's stand on treatment. It sounds like she's making good decisions.
I hope the tarceva has some effect.