I thought I would ask a Radiologist this question.
A couple of examples don't know if it's from theWBR/Gamma knife or chemo brain or combo of both?
You smell something good in the kitchen she says its Meatloaf in the oven, than Dad walks in and says you have something in the oven and just have this like clueless look and she'll say NO. So Dad has to open the oven and she'll just walk away, because she know's what just happened.
Or she owed me $13 and opened her wallet and went to give me $30 something and said how much was it and couldn't figure it out?
Or we'll be around the table with just family and she doesn't say a word and we could be there for sevral hours.
Even her walking abilities...it's so sad, I don't know how to explaine it but she looks like she's 40 yrs older and looks like me when I just got off a horse. It's like she can't pick up her feet either she's just sliding them and leads to tripping.
Any thoughts...as time goes by we see Mom's side effects getting worse?
Thanks
Sleepless
Reply # - July 9, 2012, 08:37 AM
Reply To: WRB/Gamma knife effects
sleepless, I'm so sorry your mom is having such a difficult time. Let me clarify for the doctors. Your mom had WBR and gamma knife in Jan of 2011? Has she had these symptoms ongoing since then and getting worse or are they new? From the post link I pasted below it sounds like symptoms go our to months before getting better but I'm not sure 18 months fits that. And of course let me remind you if they are new or worsening symptoms that something she should see her onc about. I hate cancer.
Please read the link then answer back.
http://cancergrace.org/forums/index.php?topic=8188.0
Reply # - July 9, 2012, 08:54 AM
Reply To: WRB/Gamma knife effects
Hi Sleepless,
Thank you for your question, which has been assigned to one of our GRACE faculty. You will receive a response as soon as possible. Please keep in mind that our faculty doctors also have active practices, which can sometimes delay their response. Some answers may also require additional research time, but you can usually expect a response within 1-3 days.
We recommend you subscribe to this topic (see the Subscribe link in the green bar above your post in the forum). Doing so will ensure that you will receive an email notice whan a response has been posted. Your post will be moved to the appropriate GRACe forum category when a response is received, but the direct URL link to your original topic will not change. You can also locate the thread by going to your forum Profile (green link on most forum pages) and checking your Forum Topics Created list.
In the meantime, it may be helpful to review the following :
Here is a discussion of chemobrain, albeit in the context of breast cancer: http://cancergrace.org/cancer-treatments/2012/04/30/can-you-get-chemo-b…
http://cancergrace.org/cancer-treatments/2008/12/02/crf-and-chemobrain-…
Here's a previous forum discussion of chemobrain: http://cancergrace.org/forums/index.php?topic=6500.0
And here's the GRACE FAQ on side effects from WBR, which also includes several links to other posts on the same topic: http://cancergrace.org/radiation/2010/09/13/radiation-faq-what-side-eff…
I hope this helps.
JimC
Forum Moderator
Reply # - July 9, 2012, 09:51 AM
Reply To: WRB/Gamma knife effects
Hi -
Sorry to hear that your mom is having a difficult time. It sounds as though she is having episodes of confusion. It could be related to her cancer, whole brain radiation, gamma knife, or chemotherapy, but something else could be the cause also: other medications or infection as an example. I refer you back to her physicians to help figure this out...
Best wishes,
Dr. Loiselle
Reply # - July 9, 2012, 10:04 AM
Reply To: WRB/Gamma knife effects
Hi Jim
Thanks for the info. I don't understand what your saying, I'm sorry about subscribing to the topic? I click on notify me by email so I find out that way usually that someone had responded.
Catdander...I feel like your always helping me sorry!
Yea WBR was 1/11 and we noticed her changing about 7-9 mos. after TX brought it to the Onc's attention and she said than she thought it was prob. do to the WBR and or with chemo brain. I expressed was nervous that tumors came back to her brain, but thankfully at next scans at that time all were good as far as brain. Had not good a good brain MRI and 3/12 had gamma knife and after that is when things really kicked up a notch as far as memory/confusion/walking/thinking etc...
Onc just did blood work for paraneoplastic syndrom thankfully negative
she said we could do a MRI to look for leptomengial something and we haven't done that yet.
Thanks for all your help
Sleepless
Reply # - July 9, 2012, 10:20 AM
Reply To: WRB/Gamma knife effects
I hope it's from gamma knife and will calm down soon. Don't worry about me, I know first hand how important this site is. Jim is using our new and improved procedure for getting around the site. For newer members it will come in more handy than for you who will or have readily adapted to the new setup. BTW, Jim knows his way around here better than anyone. We're lucky to have him back.
Reply # - July 9, 2012, 07:02 PM
Reply To: WRB/Gamma knife effects
Yes, unfortunately, so many things can be contributing, it's hard even for the doctors directly involved to tease things apart. That makes it exceptionally hard to do so if we aren't among the doctors directly involved who have all of the available information. I'm sorry we can't provide real insight here. To be honest, sometimes even when you're a/the doc involved, it's hard or even impossible to really know the cause or what will happen.
-Dr. West
Reply # - July 12, 2012, 03:48 AM
Reply To: WRB/Gamma knife effects
Hello all!
Mom went to see Onc yesterday, unfortunately I was unable to be there as some of you know my daughter had pre-admission testing, Onc called me to discuss what happened :)
With all the confusion Mom is having etc she is referring her off to see a Neurologist, she's not sure why she is.
She also believes that her poss. thoughts of leptomengial is ruled out that she would have declined real quick from when she saw her last month.
She said she would stop for a bit the Zometa, doesn't believe all her side effects are from that and that she could have bone fracture's if she doesn't go back on. Her thoughts on Xgevia are, it's the same thing and that I would rather continue with what she has been on for the last 18 mos. it has been working.
She also wants her to have a hold on TX for 2 weeks so she could get some relief from the Shingles and that we don't have a problem with her counts as well. She doesn't believe that the back pain/zingers and the RT breast pain is from the CA she sounded very confident that it's the shingles.
Yes confirmed Negative to all tests EGFR, KRAS & ALK. Not sure or ( I think ROS1 that she was familiar with that one, she put a call in to the pathology if they do that and if not who does) I told her I think I MGH her response was are you willing to pay for it if Ins. doesn't pay etc?
Do for MRI/CT Scans in Aug. thinks we should do them next week.
I don't know how most Onc's are with caregiver's, but I guess I should be very thankful how she takes the time to call me and express what's going on when I am unable to be at visit's!
Sleepless
Reply # - July 12, 2012, 05:50 PM
Reply To: WRB/Gamma knife effects
She sounds like a keeper. All of those comments sound very sensible. Good luck with her short break. I hope she recovers quickly from these issues.
And yes, I think ROS1 is really only being tested at MGH and University of Colorado, and it's unclear whether an insurer will cover the test, or XALKORI (crizotinib) if the test is positive, for that matter.
Good luck.
-Dr. West