Brain Mets Sisters
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sogny- I had over 30 lesions treated in May and about 5 in August. I did not have any symptoms prior to treatment. I will say recover was pretty easy. I was tired the day of treatment and the next day but back to regular life right away. I did have bruising above my eye from where the halo was placed, but ice helped with that. So really only a black eye that wasn't too bad. Hoping you have a good experience.
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good morning ladies.
I haven’t posted in this group yet. June 2017 I got diagnosed with 16 brain Mets. I did kadacyla for 8 months then slight progression. I started tykerb and xeloda in February 2018. My first two mri showed shrinking and stable with no new Mets. I just got my results of my 3rd mri and ct. bead from neck down. But the mri showed 1 lesions with more swelling around it and was bigger but they couldn’t tell if it was from the dye or progression. Nothing else has shrunk. Tumor markers have always been a good indication of progression. And they are right above normalbut are still rising by a point or so. My onc said my next treatment will have to be a clinical trial, but’s the only piece of biopsy I have left is too small to even be tested... I’d need a craniotomy to try and get a biopsy.. next MRI is November 16 unless i have symptoms
I feel like this waiting and we shall see is not cool. I feel like I would rather jump on this and radiate that 1 lesion before is spurts if other cells?!?
Hoping all of you are have a great day. Thanks for letting me ramble, and any input would be helpful
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Hey all, I've been a lurker, but here for some input/thoughts. Following all of your stories here has been very informative. My wife is 34, diagnosed stage IV (er+/her-) back in August 2015 with mets in liver and chest/abdominal nodes. She had a single brain lesion treated with SRS in December 2015 and has had ups and down with her liver/abdomen, but she's tolerated chemo/treatment well. Since 2015 she's had (1) Taxol, (2) Ibrance/Letrozole, (3) Affinator/Aromasin/Kysqali, (4) Xeloda, (5) Halaven and (6) has been on Gem/Carbo for the last 18 months.
All seemed to be going pretty well with Gem/Carbo, but earlier this month her routine brain MRI came back with 25+ small (sub-centimeter) lesions and she now in the second week of whole brain radiation. We're dealing with it and she's tolerating it well so far, but WBRT, coupled with the number of treatment lines we've run through so far, it kinda feels like we're running out of options. It's all very odd because she's been largely asymptomatic for so long, but with diffuse liver mets, mets throughout the abdomen and now 25+ brain mets, it seems like it's just a matter of time before things start falling apart.
What are we looking at here? I'm really interested in folks honest input. Sometimes I feel like our doctors are shining us on/unreasonably unrealistic, perhaps because my wife plans to do everything possible to prolong her life. I just feel like a time will come where we get blindsided with news that there is nothing more to do. Have you or spouses/significant others ever set up separate, more candid discussions with doctors that didn't involve you or your spouses/significant others? Thanks.
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Batfax, first, I think it is very important to know that do to the brain blood barrier (BBB), new lesions in the Brain may have nothing to do with the body. If the body is stable or better, then the current treatment is still working, body scans would be used to evaluate the need for a change. For now, they’ll handle the brain issues on their own but subcentemeter is good and radiation typically works pretty well.
As far as MO’s are concerned, mine doesn’t sugarcoat anything but she does consider me in a pretty good place since treatments are working, I’m happy, active and have no pain. I doubt many, if any, MO’s are unnecessary positive, they’re usually pretty cut and dry.
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Hi Batfax,
Sorry you and your wife are going through this...cancer really is a shit lot I’d stay for the people but not the food kind of deal. This may fall on the darker side of things so I’ll start this with that little warning for anyone reading. Also, I believe there is a forum for this topic or some similar ones you might try searching for that could be very helpful.
My doctors tend to be very positive and I honestly thought I’d be fine after my surgery to remove the one recurrent brain met. I learned I have to initiate the ‘what am I looking at’ convo. I didn’t even know I was considered terminal or stage IV until after my brain tumor was removed. I bluntly asked my doc about prognosis and even then she asked if I really wanted to know. She told me I’d be on chemo the rest of my life, but I know that there are only so many chemo and treatments. One day I will either get to NED (my own hopes - not what my dr has said) or run out of therapies to try. When I do run out of options I focus on palliative care. There aren’t enough therapies to be on for 30 years worth of time in my case. This is just my understanding so maybe there’s something someone else knows that I don’t. You can probably make an appointment to talk to your doctor solo and together. My husband and I have. He handles things very differently and is very sensitive to wording & likes things a bit sugar coated, while, I prefer to be spoken to bluntly. Sometimes we go to my appointments together for routine stuff to keep us both in the loop for scan results and whatnot. Afterwards he might ask to speak to the doctor separately to ask his own questions and vice versa. Your doctor is there for you, to help with not only the treatment of this disease, but the dealing with it to an extent so whatever you need I say don’t be afraid to ask. If they can’t accommodate it then they may know who or how to. We are going to do every treatment we can find to not give the cancer one inch, one day, or one more moment. It’s easy to loose hope in the dark, but I’ve found that I have to be my own light and positivity in this when I’m not seeing any from all other directions sometimes. Sometimes it’s my husband or stories online and talking with others. Doing research about what treatments and trials are out there may also help and is something you can ask your doctor about. You may be able to go somewhere for a trial or more treatments by searching online and asking your doctor about it. If they already looked in to it great, but if not then you just added another potential weapon to the arsenal so-to-speak. There are also many new treatments coming out soon to keep an eye on so I say it doesn’t hurt to stay in the know about current and upcoming therapies around the world. Hope this helps and that the WBRT goes well
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batfax, Progressing to brains mets doesn't in itself mean that the end is near. I've had brain mets for 4.5 years and another friend in my support group has had brain mets for 10+ years. WBR tends to work very well. It cleared out all of my 14+ brain tumors. Two tiny tumors (5mm and 1mm) grew back last year and I had them zapped with gamma knife. One disappeared, the other is stable. There is an avalanche of new treatments currently in trial. Since your wife is ER+, she should have lots of options. My MO is very straight with me and I would hope that yours is too. I don't see why they would lie to your wife and tell you the truth if you meet with them separately. If that is what they are doing, I would change doctors.
Wishing the best to you and your wife.
Hugs, Susan
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Angi,
Thanks for your very thorough description of your treatments so far. If I were you, I would ask your doctor why they choose to call your metastatic cancer "chronic" and not "metastatic". You sound like a very intelligent and straightforward person so why do they feel they need to sugar coat, essentially lie, about your diagnosis. I do think that having metastatic breast cancer can FEEL like a chronic disease because so many of us live so long with a relatively high quality of life. However, it is NOT a chronic disease. It's so important to have doctors you can trust.
Hugs, Susan
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Becs,
So happy for you! Grateful that you have taken the time to post about your experience with Temodar.
Hugs, Susan
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Lita,
I think that even if we are NED we are still metastatic and have "rogue" cells. No evidence of disease just means you don't have any visible tumors. We still need to stay on systemic treatments. One of my support group friends was NED for eight years but stayed on treatments. She eventually developed visible tumors in her lungs and liver.
There are some miracle stories of people being cured of metastatic cancer but, unfortunately, they are very rare. There is a book called, "Radical Remission" that is definitely worth a read.
Hugs, Susan
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As others have said, there are many newer treatments and clinical trials available now. so don't give up hope. Treating cancer is like cracking these new electronic combo locks... there's several codes that will work, it will just take time for trial and error to find one that works.
For medication treatment, T-DM1 is already a backup treatment for if Herceptin stops working. There are Phase 2 clinical trials for ONT-380 + TDM1 and could become one of the standard treatments in a few years. There are many others out there, it's just that I just read about this one.
One new radiation treatment is Proton Therapy. It is currently very expensive and is for brain cancers but it is not hard to believe that it would work on brain mets. The benefit of this is less radio compared to SRS or WBRT.
In the UK, they are testing (on rats for now), magnetically guided microballs + MRI and kill cancer cells with localized heat. It is basically like running a hot knife over the cancer cells. It is impossible for cancer cells to survive this.
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Hi Susan,
Yes, I think I would like to talk to the radiologist who reads my actual scans. My Onc seems to waiver between thinking we need to be more aggressive, i.e. start a new chemo pill, and just keep doing the H&P alone. I don't think the report really says enough about the lung for instance to be sure it is metastatic there? or just scar tissue from asthmatic bronchitis?
I'd like to get his actual rundown of what he sees. I can tell in some of my cd's they sent me what is what, but it gets confusing pretty fast...
I see her October 16th and definitely want to pin down some answers going forward.
Angi
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I have my first MRI after gamma knife to the brain in three weeks. I'm getting nervous already! Geesh!!!
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Gracie, I expect good results for you!
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Prayers for your Scans to be clear-NED- and prayers for your Scan-xiety in the meantime Gracie!
Angi
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Thanks so much Mae!!!! Hoping and praying!!!
Thanks very much Angit!!! Appreciate that
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Gracie,
Hoping for great scans for you! But don't stress too much if the scans don't show everything gone. Sometimes radiation can take a while. With my eye tumor, it took over a year.
Hugs, Susan
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Thanks for your suggestion Susan. I had no idea if could take so long. Glad I know that going in.
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My two biggest brain tumors (originally over 4 cm each), are now 1.5 - 2 cm each, and it took OVER a year for them to shrink by half. Hopefully, the CBD oil/tincture I'm taking is still working since I haven't had rads since early Sept of last year.
Don't give up hope...
L
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Thanks Lita! I really did not know it took so long. I thought once you had radiation that it would be gone (if it's going to be gone of course) in three or four months. They never told me it might take a year.
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Just got the results from my 3rd post gamma knife MRI and only one remnant is visible with nothing new.
I did ask about temodar being used in trials as a preventative but my neuro rads once said she’d follow the trials but wants me to not look too far ahead as I still have other options first when I need them.
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illimae, nothing new sounds good! It seems the rest is good too?! I don't know enough about it ☺
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lillimae,
I wont have new scans till November for my brain
. I've been having headaches some but not extreme... More like an ache. I used to have migraines so I know about extreme headaches...I stopped eating anything with caramel color and I RARELY have one now. I can usually trace it back to something I ate at a restaurant if I do. I have heard Tykerb and Nerlynx cross the blood brain barrier on some of my facebook groups.
I think it sounds like a great response though!
The brain stuff is super scary.
I am having my rib radiated. I am doing okay but having muscle spasms in my back, and pain. Which is causing me to have trouble sleeping. Which is not helping the exhaustion. One of the other girls is having a lot of trouble swallowing and her throat is super sore, so I am not complaining. I have 6 more treatments.
Hugs
Angi
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Hi, have you heard something about WBR ""breaks"" BBB?? my mum's onco told us that WBR makes more permeable the BBB and chemo can cross "easily"
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just checking in mostly.
Last week I made a revelation - I think my cancer likes hypoxia and it goes to “sleep" to evade treatment.
My original breast tumor was in the same area of my left breast that I twice got mastitis (a breast infection while nursing). It was my less productive side during breastfeeding.
Mastitis and the risk of breast cancer.
https://www.ncbi.nlm.nih.gov/m/pubmed/19688877/
My brain tumor formed in the same area that my stitches were in from when I was two and got pushed off the landing of a slide and landed headfirst. I assume that I had a scar in my cerebellum from the fall. They wanted up give me a CT but didn't as my mom couldn't hold me as she was pregnant with my sister. I didn't exhibit concussion symptoms but you can have brain trauma and not have a concussion
The brain injury from when I was two might be why my lesions in the brain were so resistant to radiation alone. Cancer cells resist rads by doing a protein-folding at the cellular level and going hypoxic. The cancer tissue in my cerebellum might have been hypoxic.
It also might explain why HBOT before rads was so successful for my lesions -forcing the cells to be open and oxygenated.
This is the trial drug that increases oxygenation that someone mentioned in a brain tumor forum
http://diffusionpharma.com/technology/technology-overview/
Read this as well:Improved tumor oxygenation and survival in glioblastoma patients who show increased blood perfusion after cediranib and chemoradiation
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3839699/
It might help explain why Avastin was working in my case
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Did you have a head injury growing up?
What about a correlation between your breast tumor and breastfeeding
Ann
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Dvdsp,
When I questioned my MO about Gem/Carbo crossing the brain barrier she told me that having surgery/swelling can disrupt the brain barrier and make it easier for chemo to cross (I had a crainiotomy). I guess having WBR may do the same. Ann,
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Dvdsp,
When I questioned my MO about Gem/Carbo crossing the brain barrier she told me that having surgery/swelling can disrupt the brain barrier and make it easier for chemo to cross (I had a crainiotomy). I guess having WBR may do the same .
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dvdsp, I have heard from someone else that WBR can weaken the BBB making it easier for some meds to get in.
Angit/Agness, thanks for sharing, I appreciate all the info we post, it’s both useful and inspiring 🙂
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DVDSP, the gemzar/Carbo in conjunction with full extract cannabis oil is crossing the BBB and keeping me stable since Jan.
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Hi all,
Wanted to post a small positive update. The doctors dont think the imaging showing areas of concern in my Dura are cancer, and if it is, it’s microscopic. Possibly my immune system causing all the swelling and attacking anything there. Good news! As for the edmas or why it’s happening is still a mystery otherwise. I’m on Avastin now, 2 infusions down, with minimal se’s. Hopefully my vision comes back, headaches go away and above all no more brain or meningeal cancer. I think the cancer has spread elsewhere though...scans at the end end of October. I hope everyone else is doing well. Yayno dura cancer!
Hugs
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I am on a group on Facebook of MBC individuals. I did a poll to see how long they have been living with BC.
236 votes, 10/10/18 at 10:56 pm,
34% 3-5+years,
23% 2/2+ years,
19 % 1/1+ year,
11% newly diagnosed,
10% 6-10 yrs,
2% over 10 years.so 67% living over 2-10 years and still going, 46% living over 3 years and still going.
(remember this is just that group and just those that have voted so far.)
I found it very hopeful, so I wanted to share.
Love and Light
Angi
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