Brain Mets Sisters
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Left at least you made it through the day and hopefully can rest up tomorrow.
Rach are you guys in Reno,NV? That’s where I grew up and lived until 2012. Glad the flight seems to have gone ok. There is usually turbulence coming in or out of Reno.
Has targeted radiation ever affected anyone’s ability to go #1 & 2? This may be TMI so there’s your warning. I’ve been having to use my muscles to push when going 1 & 2 even though #2 is very soft and was diarrhea Thursday Friday last week. I had SRS on Tuesday. Saturday is when I first noticed an issue going pee and it’s the same as of today for bowel movements. I mailed my MO about the peeing. She was thinking UTI, but now it’s with BM’s too. My tumors were in the part of the brain (caudate head & cerebellum) where movement is controlled from my limited understanding. Nothing is ever just normal anymore. The slightest things (I don’t think this is slight per se) have to be checked on and fussed over. It’s tiring
Hope everyone else is doing ok.
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leftfoot, wishing you an easier recovery and great results.
Parry, I haven’t read about those issues from SRS but do recall those from WBR. Of course, it could be an unrelated coincidence too. I hope you gets answers and improvement.
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Leftfoot, I hope you can spend sometime relaxing and recovering. My thoughts are with you for good scan results after such a battle with Gammaknife.
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In an excellent 2019 video about the use of radiotherapy for brain metastasis, Dr. Paul Brown, Professor of Radiation Oncology at the Mayo Clinic, suggested the following guidelines for radiation treatment irrespective of where the cancer originated (breast, lung, colon, etc.). It is the clearest explanation of the appropriate therapy for patients that I've come across. Those wishing to view the video may visit:
- For patients with oligometastases (defined in the video as one to four brain metastases), Stereotactic RadioSurgery (SRS) is recommended. Adding Whole Brain Radiation Therapy (WBRT) thereafter helps to prevent additional brain metastases, but does not improve Overall Survival (OS) and can significantly degrade cognitive abilities and Quality Of Life (QOL). Therefore, SRS is considered the standard of care for these patients.
- For patients with a single large brain metastasis, surgery plus SRS is considered the standard of care.(Adding WBRT can help prevent additional brain metastases, but it fails to improve OS and can significantly diminish cognitive capabilities and QOL).
- For patients with multiple (widespread) brain metastases, or patients who have a rapid recurrence (i.e. within a few months) of brain metastases treated with SRS, Hippocampal Avoidance (HA) WBRT with Memantine HCL is recommended, although using SRS alone for patients with up to 10 brain metastases may also be a viable option. (The role of systemic therapy in this context is still being explored).
HA (or Hippocampus-sparing) WBRT is a special form of WBRT that spares the hippocampus (a small region of the brain that is primarily associated with memory and spatial navigation) from being targeted by radiation. HA WBRT is accomplished by using Intensity-Modulated Radiation Therapy (IMRT), which is an advanced mode of high-precision radiotherapy that uses computer-controlled linear accelerators to deliver precise radiation doses to a malignant tumor or specific areas within the tumor.Memantine HCL is an Alzheimer's drug that can help prevent cognitive decline.
This information has been incorporated into my book, "The Insider's Guide to Metastatic Breast Cancer," which is available in paperback and eBook formats on Amazon at https://www.amazon.com/Insiders-Guide-Metastatic-Breast-Cancer/dp/179586060 X and a complimentary .pdf is available by emailing me at bestbird@hotmail.com
With good wishes!
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Hi all. My consultation with my RO went fairly well. I was disappointed to learn I have too many lesions (mostly very small) for srs treatment but had a really good discussion about the wbr treatment plan and lots of confidence in the doctor. Tentatively starting 10 day treatment on the 25th.
Bestbird, thank you so much for sharing the link to the video and the information. I was able to watch it before my appointment and felt very ready to discuss the treatment. He is going to try to plan for the HA method if possible and will prescribe memantine.
I did get a new ct and bone scan which showed my chest node tumors and bone mets are responding well to THP. Yay! First piece of good news I've had since December.
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@Parrynd1: We were in Reno. Aly was discharged yesterday and we're entering hospice. We're hoping that the radiation will eventually help relieve some of these symptoms.
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We left Reno in 2012, but it has changed so much. Way more expensive than it usd to be. I'm not familiar with the cancer care there, but I'm sure Aly is in good hands. At least she is well enough to be discharged. Has it helped either of you after checking in to hospice? I've been wondering when I will draw the line and go to hospice myself. My husband does everything for me except bathroom and showering for now. I hope she likes it there and starts to see results soon. Did the dr's suggest the hospice? My MO said I have less than a year and I read about going to hospice when you have 6 mo or less left. Sorry if this is too private a subject please don't feel like you have to answer. Oh, whatever happened with that Immunotherapy trial
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Parrynd1,
I'm so sorry your doctor said you have less than a year left. What prompted him/her to say that? Have you gotten a second opinion?
We are here for you. I hope your doctor is very wrong!
Hugs, Susan
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TwiggyOR,
Hoping you will have a manageable experience with WBR. My Chinese Traditional Medicine doctor had me drinking teas and certain foods which I believe really helping me through treatment. PM me if you would like the info.
Hugs, Susan
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Question for you long timers. I have had MBC for six years (ER+/PR+/HER2-/liver and lungs) with brain mets for three. Most recent brain MRI shows 37 (very small) tumors so I'm going in for second round of WBR (previous round was 3 years ago, two rounds of gamma since). Thing is I feel pretty well, liver and lungs are stable, and I can tolerate more treatment but my options are running short. Previous treatments include Tamoxifen, Faslodex, Xeloda, Doxil, Taxol, Talazoparib, Ibrance, Abraxane, Eribulin, Gemzar. Any suggestions for treatments and/or trials that might be worth looking at? I'm not really into alternative therapies.
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Scoobie- I am Her 2+ and ER - but am in a similar situation. In the last 10 months I have had gamma knife procedures to my brain to treat over 30 lesions . I am hoping and waiting for something new to help treat brain mets. I will go through my notes to see what I can find for Her 2- brain mets.
Hoping there is s drug out there for you.
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HI leftfootforward .Thanks. I've sort of thought about HER2+ treatments (Perjeta/Herceptin). The only biopsy that said I was HER2- was five years ago, was of the liver only, and there's bound to be a fair amount of heterogeneity since then. Brain biopsies are tricky and carry some risk, so why not just try something and see if I get any results? Anyone have any relevant experience?
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Hi
My mother was diagnosed with ER-negative, PR-negative, HER2-positive breast cancer on 28 Feb 2018. We gave Neo Adjuvant Chemotherapy (Epirubicin + Cyclophosphamide) every 3 weeks for 4 cycle. Post that, Paclitaxel and Trastuzumab was given weekly for 12 cycles. Chemo ended on 16th August 2018. Left wide local excision with axillary clearance was done on 30 August 2018. Radiation was performed after surgery (3D CRT). Currently, Herceptin maintenance dose was being given (once every 3 weeks), 13th cycle was given on 02 March 2019 and 4 cycles were remaining.
My mother was feeling problem in holding stuff in her right hand few weeks back and we had a brain MRI done where in there is evidence of T1 hypointense heterogeneously enhancing lesions in right frontal, left basifrontal and left parietal region, largest measuring 18*14 mm with mild to moderate surrounding edema.
Currently she has been prescribed corticosteriods - 12mg dexamethasone for 4-5 days and then we plan to get her treatment done. Some doctors are recommending to go for surgery if there is no improvement from steriods to get the largest lesion removed and then radiation while others are suggesting targeted radiation like gamma knife radiation for all three lesions.
I would really appreciate if someone with similar situation can share the experience as to what would be the best options? What are the side-effects and chances of success of those options?
Any help would be great!
Thanks!
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Hi sonamg. I was diagnosed with breast cancer in 2015. It was also er-pr-Her2+. I was almost three years cancer-free when back in December I experienced my first of two seizures.I was rushed to the hospital and had an MRI and discovered that the breast cancer has metastasized to my brain and into my lymph nodes. I had four lesions one that was pretty large which caused the seizure. I was put on the same steroid you mentioned as well as an anti-seizure med. My neurosurgeon recommended the gamma knife because of the size of my tumors. The gamma knife is an outpatient procedure and it took me several weeks to recover but I was also dealing with the two seizures my body had gone through plus all the different medications I was on. They say though you can usually resume normal activities within several days after the procedure but everybody is different.I had a follow-up MRI in February two of the lesions were completely gone the other two had shrunk considerably. The largest one I had which caused my seizure shrank 3/4 of its size with no new lesions. I have another MRI and hope to see even more shrinkage and again no new lesions. I was recommended gamma knife by my neurosurgeon rather than brain surgery. If you have any other questions please just let me know. I pray for you and your mom. God bless you both
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Hi Sonam
My general advice would be to go with what your radiation oncologist recommends. This is literally brain surgery. Don'r take my opinion, don't take anyone's opinion on an internet forum; if you have two ROs with diverging opinions ask for a committee to review or go with whichever you are most comfortable.Side effects are dependent on patient age and status, but are generally limited. Success rate depends on what you mean by success: NED limited, significant (> 50% shrinkage) quite high.
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Hi ladies. I am scheduled to have a craniotomy end of April. I have had WBR and 2 high dose cyberknifes on this one spot and it will not go away, just getting bigger. Dr feel it isnt sure if its necrosis or active tumor, but either way I need to get it out. Terrified of have my brain operated on. Anyone else had this done and can give me an idea on what to expect?
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Hi NicNak, I'm sorry to hear you have to have a craniotomy. It sounds scarier than it is! I actually had a harder time recovering from my mastectomy than my craniotomy. I was in the hospital for 4 days following the surgery and discharged to home. No real follow-up except for an appointment with my neurosurgeon to have the staples removed about 10 days after surgery. I had Gamma Knife to the tumor bed about a month after surgery. The biggest side effect I noticed during my recovery was I was sensitive to light for a few weeks, but nothing a pair of sunglasses didn't take care of.
Best wishes!
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NikNak, I was out of the hospital in 3 days after my craniotomy. The only issues I noticed for a while were sensations of sensitive teeth. That was temporary. Nowadays, the only issue I find is it is unpleasant to touch my head whère the surgery occurred. Mastectomy was harder. WBR was harder than the surgery was.
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@Parrynd1: Sorry for the late reply. Aly is at home in hospice now and things are a lot more peaceful. Although it is sad, no one misses trying to decide what to after discharge, whether to go to the ER, or what treatment to try next. I'll try and answer some of your other questions below...
Has it helped either of you after checking in to hospice?
I do think Aly is a lot happier. Her brothers do need to let the hospice nurses pick up some of the work, but it's hard because they were doing it all while we were traveling. She trusts them and they don't want to leave her side. I also think Aly is a lot more comfortable and they definitely have figured out the right cocktail for nausea. It was the right call.
Did the dr's suggest the hospice?
Yes, a few doctors suggested hospice. Aly never got on the immunotherapy trial because she declined too quickly and was on too many steroids. Steroids are an immunosuppressant so immunotherapy is not effective if you are on high doses of steroids. We underwent a remote consult with Memorial Sloan and they didn't even charge us because when they looked at Aly's medical records, their only suggestion was hospice.
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Rach, thanks for your detailed reply. It’s comforting to know Aly is at least doing better and is more comfortable now. I appreciate your openness about the Hospice question. I know I will be there someday soon as well and it’s nice to know what we might expect when that time comes. When my family helps me, and they don’t need to, I read it as their way of fighting the cancer too. They can’t get the chemo or take away the pain, but they can be damn sure to cut up my chicken before I get my plate, carrying my purse, and other littler things that I don’t have much trouble doing. Maybe that’s what her brothers are doing now? There have been times when the help causes an issue so there’s that. Mostly I want to prepare my loved ones as much as I can. My husband is looking for a good person to talk to about everything now so they can have a good relationship and background for when things do get bad. Most questions I have now not many want to talk about. So again, thanks.
I wish I had something more comforting to say. Hugs to you and Aly wishing you both peace, love, comfort, and healing. You both already have the strength to have come so far.
Hi everyone. Hope you are all doing well or getting there. Hugs all around.0 -
So the patient advocate called me back and told me not to worry about the Herceptin. My insurance is paying 100 percent of medicare allowable. I had my infusion last time, and I am scheduled to go in on Wednesday 4/3.
I emailed my nurse about when I am supposed to be able to go off of Xeloda. My nurse did email me and told me they want to talk to me about Tykerb next time I come in to see her-May 12. This is really making me nervous. It is a pill that is taken with Xeloda. It is only suppose to be taken if you progress, and if Herceptin is not working. I am NEAD still per scans.
So, I am thinking I may need to do something like get a second opinion or talk to my senator's or genetech who makes it or something. Such BS. My Treatment center has really been great to me until now.
So sad to think they are cutting me off the med that works because it is expensive. I also know that they are private non profit and need to clear as much as they can to help as many people as possible. so frustrating.Thanks
Angi T
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Has anyone had cognitive issues after stereotactic radiation. I had six small lesions treated in late January and I'm noticing difficulty focusing, difficulty doing tasks like spreadsheets and just generally not sharp. I feel like an elderly person. Wondering has anyone else had these issues. Not sure if it's the radiation or stress or of it's an issue with brain mets.
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Did your Rad Onco put you on Namenda/Memantine (it's an Alzheimer's med) to help minimize cognitive/neurological issues?
My RO had me on it for 6 mos during Whole Brain Radiation. I have over TWENTY brain tumors, and I only have minimal issues, mostly with math. I still get very tired, however.
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lita57 I had targeted radiation only so I don't think any cognitive issues were anticipated. It's not listed as a side effect. I did start Xeloda couple of weeks ago and and was on Arimidex and Aromosin for a few months prior and someone suggested chemo brain. I feel like it started shortly after my radiation. It scares me that it might be new mets and yet I had no symptoms with the mets that I had and they were found incidentally when I did a PET scan to look at the main area of disease under my sternum as well as some lymph nodes behind my sternum. It's hard to explain it but it's like what I imagine ADHD is. It's hard to focus and hard to do simple math and concentrate.
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lita57 I'm sorry I was so focused on my own stuff (and maybe my ADHD) that I blew past the fact that you have over 20 brain tumors with minimal issues. I do hope that you remain stable. Blessings.
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Hi Dorimak
I also started xeloda a few weeks ago and have had a few instances where I just can't find the word I'm looking for and it's like my brain can't even find an alternate word to use. Spreadsheets I've been OK with but I feel like somethings take me longer than it should. I had a clear brain mri a few weeks ago so I'm putting it down to chemo brain.
Ally
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Has anyone had any discussions about flying with a brain mets diagnosis? I had stereotactic radiation in late January. I took a three hour flight on Mar 5 and returned on Mar 12. I just wasn't feeling 100% after I got back and I read online that flying can cause brain swelling and saw one patient was told not to fly. I was sick on Friday on Day 12 of my first cycle of Xeloda and had a headache and they've ordered an MRI for tomorrow which makes me nervous. hoping it's not new brain met(s) that have popped up in the past two months.
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Sudden drops in cabin pressure can be especially bad. I was told NEVER to fly again with my 20 + brain mets.
Hope things are ok with your MRI.
L
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Thank you Lita. Gosh this is so tough.
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dorimak
I have never thought about not being able to fly. Thanks to your post I have a call into my oncologist and my neurologist. I have a trip planned for work at the end of the month. I had 4 mets and they were treated with gamma knife in December. I had an MRI in February and 2 of the 4 were gone and they other two had shrunk considerably. No new mets though. Good luck with your MRI, please keep us posted and if they gave you any information on flying. I have another MRI scheduled in May or maybe sooner
Lita57
What side effects did you experience with cabin pressure? What made it so bad? Like headaches, nausea? Were you told or informed not to fly? Info like this is what i find useful but also puts me in panic mode. I hate to miss this trip with my job since I told them I could go and the tickets were already purchased!!
Thanks for any information ladies.
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