Brain Mets Sisters
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Hi 3Mom,
I was the same after radiation, very tired with not much of an appetite. It's definitely improving now as far as appetite goes. I'm still very tired though, but that may be chemo and reducing the Dex.
I get oral methotrexate (& cyclophosphamide). For some reason intrathecal chemo is not done here. I've not had low platelets so can't help you there.
Some of my se's have increased, eg double vision, neuropathy, headaches, facial spasm from time to time, unsteadiness etc, I see my oncologist next Monday so will hopefully find out what's going on.
I hope your platelets come right. Maybe put platelets in the search option below and see f you can find some info.
Let us know how you get on. Take care, kt
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Hi Kt. its been 8weeks since my WBR and still have not had a scan. Saw onc on friday and TMs have gone up again but not at such a high rate as the month before. They are now 3700 and CEA is 42. my markers have never been this high.I have had one complete cycle of MMM chemo. Onc did not seem worried. Says she will arrange scan for after 2nd cycle chemo. Im still feeling tired ans some days really lightheaded. I'm off steroids now but taking anti siezure meds. . How long after your WBR did you get your scan?
Hope you feel better soon Kt.
Momall hope everything goes well with Dani.
Good luck to everyone waiting for results. wishing you all painfree days.
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Hi Mutherflush, haven't seen you for a while.
I finished WBR on the first of August, & my last brain MRI was 30 of September , so 2 months. I believe it showed improvement (particularly to the tumour I had on my pineal gland as well). Is that the Ca 15-3 tumour marker in the 3000's? My marker is going down slowly, early 1200's to late 1100's.
It's not surprising we're tired, radiation can take months to get over, then we're having chemo on top. I hope you gradually feel more energetic. Will be thinking of you as we go through this together on opposite sides of the world.
Take care all x
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hey girls! Recently diagnosed with brain mets, 6 total. I'm collectively calling them Kevin. 2 more whole head radiations left and they'll check me in two months. The biggest one was pressing on my occipital part but my vision is getting better. I get these weird tingly sensations in my muscles. I'm her 2+ and was wondering if anyone is on the chemo that passes the blood brain barrier lapatinib and if so how that was working out. I was Ned before my massive seizure
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Jillianclaire my daughter is also Her2+ luminal B, she was on Tykerb(lapatinib) very short time, diarrhea but nothing crazy. Doc took her off it and she was put on Navelbine Herceptin (she was on it before). But now that you mention about the Brain Barrier I don't know why she was taken off so soon.
WBR was taken off the table for her, I am wondering if it's because they want her to be able to be mothering the little ones, and as there are so many SE's. But it does trouble me, when I see the extent of all the lesions all over the calvarium, facial bones, extracranial, intracranial dural based, WTH?? It's a whole page of stuff on the report. Aghhh.
Thank you all for your warm thoughts and prayers. She is still going for the IMRT, prob another 4 days. But so much is left untreated. Let's hope the systemic treatment will do something. And a speedy recovery to all of you.
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Momatt, I would definitely ask for the rationale behind taking WBR off the table. You won't be able to guess why but they can at least give you some concrete answers. I don't think it would just be about her mothering her kids given all of the other treatments she has going on. At least if they tell you why, or if they are saving it for later (which some RO oncs do, if they can do gamma knife etc). WBR does not totally incapacitate everyone. It's not a walk in the park but it is doable for some, depending on any other issues they are having. I could see brain swelling being an issue if that is what someone had going in. I hope you get answers soon. Thinking of Dani.
I can tell you for me being almost 6 weeks out, I am improving well. I am far less tired, am able to exercise everyday and have been able to go out and about even during WBR. I did not feel at all well the first couple weeks after, but I am improving quickly. Just more bald. I have results from my latest scans for bone and CT tomorrow and will decide what treatment my onc wants me on. Fingers crossed I am still NED from the neck down. For anyone who has been through WBR, give yourself more time to recover. Especially if you are also dealing with chemo or mets elsewhere. That can defintely slow things down. Have not notice hearing or memory issues yet. If there are things I have forgotten, it would be similar to chemo brain.
Good luck to everyone, KT, hope you catch a break soon. Jillian, sorry you are here but we welcome you. Have not tried Tykerb myself yet but know it does cross BBB. Xeloda does too. This is a good forum. It is also a good idea to go back some pages. Lots of different people with experience on some of these drugs in pages past.
I have not had any brain MRI yet, but imagine it will take a while. Will be asking if nothing done at least by 3 months. I know it can take a while to show results.
Wishing everyone a comfortable week.
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Sorry I haven't been by in a while. This account is hooked up to my Yahoo account and I've had my account so long with Yahoo that my user name and password don't work with their new security measures and I have to access my account via text permission - a nightmare.
Anyway, I'm still here.
lots to update you all on.My docs were wrong and waiting for symptoms of a specific type, while discounting the symptoms I was having (period stopped, started having facial numbness on the right) were signs that a cancer cell line that was radioresistant was growing. It still took until I had a PET scan until my docs finally listened to me, at that point I was having to take dex again due to the headaches. To clarify, partial brain rads killed off the cancer but starting in the May scan a dot showed up in the cerebellum (treated area) that was evidence of a cell line that broke through.
As a patient, in hindsight, I can see that lesions of the size I had would have caused severe symptoms in the frontal lobe but due to the progression being on the surface of the cerebellum the standard of watchful waiting failed miserably. After the PET scan it still took another two weeks to start a chemotherapy protocol, starting with IT Topotecan. It took until the third week to start IT Herceptin again with the Topotecan and also separately IV Kadcyla. Then after weeks blocked by insurance (which is still in appeal) I said I would take financial responsibility for treatment with Avastin. It has been an awful 6 weeks for me going from being symptomatic and untreated to some severe symptoms with early dosing to finally stabilizing.
I had a CSF study two weeks ago that was still good but with elevated protein, I'm kinda believing it was due to cancer cell die-off. My balance has improved and my dex usage has gone way down to almost nothing.
I had my first brain scan last week and my lesions are stable in imaging. Phew.
I'm doing more and I'll write about that later as I need to play with my kids right now.
Ann
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Oh my goodness Agness, you have certainly been through the wringer. I am glad to hear that your lesions are stable and you are able to wean off the dex now. I was worried about you, but with all that going on, of course you did not have the time to update all the time, understandable.
I am glad you checked in, will look forward to hearing more when you have more time.
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Agness, so happy to hear from you. The whole scenario that you described, it feels as if you were going down the rabbit hole. Hellllloooo!
Agness, what was the reason for them to disregard your symptoms, or to take it so lightly? It's scary, it could happen to anyone. You did such a smart act in taking the responsibility for the treatment. As a matter of fact, this is something (on top of everything else), that we are discussing every day. As I mentioned earlier, Ins person told us the next type of treatment would be very hard to approve. They pay a fortune for this Insurance. Insurance does not understand or want to understand the path of someone with mets. But, they are looking into different options, I spoke to the pre authorization person at doc's office, she told me, there is some kind of buffer that docs know about, not the coupon from the big Drugs company, but some other form of appeal that if a doctor really think it's an important tx, they have people that underwrite it or something like this.
It's really beyond words that you had to deal with all that. How are the kids?
Mara I have walked with you through your difficult process, so glad that you are holding here. The way I understood is that they did wanna leave it as an option. She also has extensive mets all throughout, I reread the report and it's just unbeliavable. This bone, that bone, the skull the facial ones, the ones touching the Dura, circumventing, crazy stuff, then she has extensive bone mets and the Liver.
What were you told about WBR, if tumors reappear they could still radiate the area?
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Edited to add since did not understand the question fully. If another lesion showed up, we should be able to Gamma Knife a given lesion. I don't imagine WBR would be suggested for subsequent lesions but who knows.
I wasn't told if they would redo the area again with the WBR. Quite honestly, I would hope not. My understanding is that if other ones pop up, we could probably gamma knife them. Currrently, I am just looking at the right now. I am sure tumours will show up at some point, and we will see what is proposed. I would NOT be agreeable to a 2nd round of WBR. I am currently doing well, have recovered quickly and so far not having memory issues or hearing problems. I am just bald. I am not going to bother worrying or looking up the long term side effects of WBR either. . Those are usually ugly and I am not interested. I feel the location of my tumour (in the dura, not the brain tissue) helps me and I do believe I am still NED below the head, that makes it less complicated. Will find out tomorrow if latest scans show that and my longterm treatment plans from the neck down as well. Glad to hear from you Momatt.
I also believe that I do not have to meet the common side effects, any more than I believe in survival stats etc. I decided that I am not sick until I am. I'll take feeling good for as long as possible, be that days, months or hopefully years. I hope we all get many many good years. Treatments are improving and some of us will go on many years, even with dreaded brain mets. Even they are not always the immediate death sentence.
My cancer is very aggressive and fast growing, that is why WBR was the only one offered. The feeling was, I would just manufacture more and more lesions. Better to nuke them out of existence and give me more time without new lesions. I did not understand that so much at the time even though this is why treatment was aggressive with WBR offered and not gamma knife or another for my tumour.
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Agness/Ann,
We are rooting for you!
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Mara i do wish they would have done more about the mets. She did get like 12 different treatments last year for different areas of the whole head (meaning including the face), but this year I thought they waited too long. Thank you for taking the time to answer.
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Thanks for your support. It is a lot to deal with.
Why did they wait? They were waiting for symptoms, it is what they do. They wanted to make sure it wasn't pseudoprogression - it wasn't. I honestly don't think any of them are very good at reading scans or listening and understanding patient symptoms, mine were subtle but there.
Current Oncology Treatments
Weekly IT Topotecan and IT Herceptin through Ommaya Reservoir
Avastin every two weeks via IV
Kadcyla every three weeks via IV
Other Therapies - Twice a week as possible
Dose 1:
- DCA
- Poly
- HBOT
Dose 2:
- Artusenate
- High dose vitamin C
- HBOT
Reference Links
Helping guide my treatment:
http://www.brainmetsbc.org/en/content/magic-happen...
Study Suggests Using Excess Stress to Kill Therapy Resistant Breast Cancer
http://www.prnewswire.com/news-releases/study-sugg...
Endoplasmic Reticulum Stress and Cancer
http://www.jcpjournal.org/journal/view.html?volume...
Endoplasmic reticulum stress: cell life and death decisions
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC123669...
Bevacizumab induces A549 cell apoptosis through the mechanism of endoplasmic reticulum stress in vitro.
http://www.ncbi.nlm.nih.gov/m/pubmed/26191230/
Modes of resistance to anti-angiogenic therapy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC28748...
DCA - turn on apoptosis
http://scienceblog.cancerresearchuk.org/2010/05/12...
IV Vitamin C
http://amsa1.com/intravenous-vitamin-c/
http://m.jci.org/articles/view/119832
Artusinate - artesia, oxidative burst
https://en.m.wikipedia.org/wiki/Artesunate
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC438933...
Poly
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Thanks for your reply. kt. Wishing all the best!
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Agness Thanks for that link about "magic happened". Very good info to have when considering treatment. Her story plus the good treatment certainly does give a lot of encouragement to us all. I appreciate all of the information you include in your posts. Gives me things to ask about should it come up again. (Hopefully not too soon though).
I do want to say that my scans today show me to be NED below the head. I am so glad for that. I start Herceptin/Perjeta/Taxol week of Nov 15. I wanted to wait until after my birthday dinner. Had some taste changes with previous taxol. It will be half the dose I had before but not willing to risk my birthday dinner. The taxol will get dropped in 3 months after next set of scans (assuming no progression). This should be doable for me, WBR effects are fewer, not nearly as tired. I have to have the chemo since my government will not give me herceptin/perjeta without starting with a chemo. She will drop it if I cannot put up with it or if NED on next scans. I am OK with this treatment plan. Will keep exercising like a demon, take a probiotic for any GI issues and go from there.
Hope everyone else is coming along. Kt, glad to see your markers coming down. Hope the other symptoms you had are subsiding a bit.
Jillian Claire, you are in the final stretch. I did have tingly muscles post radiation but this has not been happening as often. Not sure if because I am almost 6 weeks out or if because I am exercising more. You will be very fatigued if not already, rest as much as you can. If you are on steroids, you may take a bit to feel more yourself. Try to exercise, even 5 or 10 mins a couple times a day. This will make the WBR much easier to recover from. You may already be moving. You may feel nauseous and without an appetite for the first couple of weeks, that will go away. I found hydration and forcing the eating very helpful. Once I got back to my more normal diet, recovery seemed to ramp up. Good luck to you as well.
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I just wanted to drop by and say hello. Hope everyone is doing well. I completed stereotactic radiation therapy two weeks ago for 7 brain tumors (all under 1cm). My breast tumor and lung met have drastically shrunk over 75% on Doxil and praying that SRS took care of the lesions.
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Hey Geeper, sorry that you have to be in this group but glad to have you. SRS is a great treatment option, usually less recovery time than the whole brain radiation. Glad to hear your breast tumour and lung met have shrunk. Were you having a lot of symptoms during treatment, if so, you'll probably find you'll feel much better. It's kind of like a tuneup for the brain in a way. Keep us posted.
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Hi Mara, thank you for welcoming me. I have inflammatory breast cancer also. I just had a weird hunch that I had them. I had lip and chin numbness but told by my radiation oncologist that the lesions are to smalI to cause any symptoms and that the numbness is from chemo. I will definitely keep you posted.
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Geeper hope it's all gone!
Mara it's really disgusting that some bureaucrats decide what's the best treatment. They have studies. In a way as much as it's harsh, i think chemo has the best chance to fight brain or skull mets, just my opinion. So it could just turn out a blessing.
Dani is having facial pain. Yep. They were saying maybe they will wait a bit to see what happens. And knowing she has so many mets, it really concerns me that something is pressing on a nerve. It's just one sided pain. I sent doc an email, requesting they check the scans again. Will see what the response will be. She is still doing the brains rads. I really hope they look into it.
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Hi Kt. Yes CA15-3 in 3000s. Good to hear your markers ard comming down. Ive had an issue irregular heart beat but that is sorted now. My head has cleared a little since thet got that under control.
I find it difficult to believe how many of us go on ti develop brain mets. I am trying Oxygen threapy along side my chemo. Have had 12 sessions so far. Hopefully it will help the chemo do its job more efficiently.
Will keep jn touch and compare notes. The suppott on this site is incredible. I dont post often but I log jn daily to see how you are all getting on.
Good luck to you all.
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Hi everyone, I've been reading but not posting so often as I really tired & have an annoying headache most of the time (?dex withdrawal)
Sounds like you're all mostly going well (annoying the docs didn't listen re your symptoms Agnes).
Glad you're NED below the head Mara.
Mutherflush, is oxygen therapy offered to you or is that something you have to organise yourself?
I have an oncology appt on Monday. Will be interesting to see if he thinks the CM is working or not. Atm I'm not so sure, unless it's just the chemo making me feel so crappy.
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KT, It would not surprise me the chemo can make you feel so crappy. There's no way I believe that the combo of all the rads, plus steroids, then weaning off the steroids, then straight back to chemo would not be hard to bounce back from. That's an awful lot your body is being put through. I would say as long as you're not getting worse, or having other symptoms you did not have, or symptoms you had pre rads, then you are probably doing OK. I do wish it could be quicker for you.
I will be jumping on the chemo bandwagon myself to keep myself ned. Start my herceptin/perjeta/taxol regimen from Nov 15th. I don't mind that if it will keep my body NED for longer. Easier to manage just my brain for sure. My hat is off to all of you who are also managing mets throughout the body too.
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Hi,
Got back my CSF study from Tuesday. My protein level dropped which is great, my glucose is still high, no cancer cells were found, and slightly elevated red and white cells are expected with brain treatment.
Yeah for small victories
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Kt. I think that it's the chemo making you feel awful. I am on a combo that includes methotrexate and get some of the symptoms you are feeling. My blood pressure goes low and my heart rate gies up.
The oxygen therapy is not offered .It is a self referal process. I myst admit I have felt better since I began the therapy. I am off all steroids now. only take them with chemo. My onc does not promote it because it is primarily for MS, but has told me if I want to try it she has no objection. What have we got to lose. Talked with a lady yesterday and has been having the therapy for almost 3yrs. She found chemo really hard and decided not to carry on. She is now ned and only sees her onc twice a year for scans.
Picked up a magazine called ICON and there was a really good article about the therapy. I read that they are trialing the therapy along with brain surgery in LONDON at the moment.
Hope you feel better soon. Good luck to all you ladies waiting for results.
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Wonderfull news Agness!
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Agness that's just great. It's all about small victories.
She will be having another MRI to look into the pain. Question: I have asked in the past for progress notes from the RO (others and even this current one and have gotten it), from NeuroOnco and even from past Onco. This week,when we asked for the progress notes from this treatment, the secretary said oh no, we don't give this to patients. I know she is wrong, we are entitled to reports (call it what you want). But before i speak to Administrative secretary I wanted to ask how did you ladies, get some records of the visits.
I like to have paperwork with me for many reasons: first I like to see what they wrote. And also, it's much easier if one wants to ask a question either to the current doctor or take it to a 2nd opinion, I don't need to beg then.
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Momatt, I only had to ask for some of the notes. Things like scans, bloodwork, my MO just gives them to me. When I applied for disability at the time of the mets dx in july, I got about 100 pages worth of notes on treatment, dx etc without having to ask.
You definitely should be able to have them since they are Dani's medical records. Sorry you have to get more insistent. You should simply be given them.
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Aghh I think so too. I am so angry right now. I am gonna calm down then I'll write an email to the Adm Secr and RO. I truly don't appreciate when people that should be working for you give YOU hard time. And I don't like the power or scary tactics. Like we need more to deal with, what a nonsense. This will actually be part of the email.Thanks so much,
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thanks.
I'm doing hyperbaric oxygen treatment too (HBOT). It was suggested by a naturopathic doctor in conjunction with IV vitamin C earlier this year, especially with my ketogenic diet -- it helps drive the drugs in deeper to the tissues. I took a break of HBOT because the brain rads was causing a histamine reaction that blocked my sinuses and then my ears were also in the field of treatment and rarely HBOT can cause ruptured ear drums. I returned to HBOT this summer after they weren't sure if I had progression or pseudoprogression as I felt that watchful waiting and doing nothing made no sense. Of course now we know it was tumor and not pseudoprogression (actually my neuro-once are still hedging in that regard and I know they are wrong).
Now I'm getting HBOT with IV meds to treat my LM. The HBOT is to drive the therapies in deeper, help to heal my brain from past rads and current traumas, and to try to force oxygen into the cancer to make it die. Fingers crossed that it works
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Agness I am interested in the HBOT therapy. Keep us posted once you know if it has been working.
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