Brain Mets Sisters
Comments
-
thrivingmama, sounds like you’ve got a pretty good handle on this, you’ve obviously done some research. I’ve had gamma knife several times whenever new spots pop up and recovery is minimal with no side effects in my experience, a day of rest was all it took. I too am saving WBR for later, mainly for a time when/if I have too many for gamma. My MO and neuro onc support that decision and I want to hold out in case WBR is an exclusion for future trials. I go to MD Anderson, so trials are important to me, especially for the brain mets.
I have no advice, as you seem to be on a similar plan but I do wish you luck and success.
0 -
Thrivingmama,
I am 2 weeks out from completing WBR. If gamma or cyber knife were an option for me, I would have taken them. However, they were not, as I have too many small mets. Everyone responds differently, and fatigue and nausea have been real for me. But I would like to say that I am now on day 5 of a vacation and have not been taking my regular afternoon nap, but today I went horseback riding for an hour (beginner!) and also walked half a mile to dinner and back and feel fine. Although I am quite pooped right now and it is 9pm. I hope things go well for you - just wanted to chime in if the time ever comes for WBR, I was terrified at the time but am ok right now.
0 -
illimae - thanks for sharing. I'm curious... after your brain met diagnosis, did you get a Neuro onc in addition on your team? and a radiation oncologist? Good to hear that there are potentially one clinical trial options as well
kikomoon - thanks for sharing your story. sorry to hear that you have been dealing with the side effects, but that sounds like a fabulous vacation! I am so glad you are able to enjoy it, even if tired and needing a nap.
0 -
Fatigue is harder with WBR for sure. Don't rule out the option of it if you are not offered gamma knife on your mets. If they are small, you may be a candidate for the local treatment and that is easier. RO can let you know what is best given your cancer and the type of BC you have. Not sure if tubular requires WBR or gamma knife. As far as other drugs, not sure what ER+ drugs there are that cross the brain. Perhaps somebody here can weigh in on that.
0 -
So I have an abdominal MRI set for tomorrow and brain MRI next Wednesday. They called and said they’re still waiting on approval for the abdominal. I asked if she could start approval process now for the MRI brain. She called me back and said brain was approved. I guess it’s much easier. So I’m going to have my brain MRI tomorrow instead and abdomen next week. My head is still not right, and I’m very weak and having headaches. I want to know the results so if it’s not in the brain, we can start a process of elimination of what’s causing my issues. Anyone have it in their orbits but not in brain? Just curious. My answers never come easily, so I’m preparing myself to move on to try to figure out what’s going on.
0 -
Thrivingmama, the neuro onc I refer to is a neuro radiation oncologist and she and my MO coordinate my treatment and plan. My MO is also on boards and in groups for brain mets as she specializes in HER2+, the set up works well.
0 -
I believe that SusaninSF had mets show up in her eye, not sure if just one or both of them.
0 -
Thank you, Mara. I’ll ask her about it after tomorrow.
0 -
Well the odds were not in my favor today. It looks like I have to do WBR. I drew the leptomeningeal straw. So I start next Monday. Still worried about short term memory loss but they are giving me namenda to help with that. And that is really the only side effect they think I will get. Supposed to get better after six months. Down side is I can't have WBR again. But they said I would be able to do cyber knife. So the hope is to watch it and zap any suckers as soon as they appear. RO was pretty confident that since all the spots are pretty small they will all disappear.
So I am going to start preparing with the brain activities suggested by Mara.
KBL hoping for good scans but also an answer to your issues.
Can they see an eye tumor on a brain MRI?
Thanks for all the info!
Julie
0 -
Julie, I’m sorry that the outcome wasn’t what we were hoping for but I see this in my future as well eventually and am comforted my Mara and others who’ve been here, recovered and continue to do well. Best of luck to you.
0 -
Brain MRI is clear. Mentions inflammation of my left sinus, which I've seen on reportsbefore. I know I have a cyst. I don't like ENTs because I went, and she rushed me in and out and gave me a nose spray that didn't help.
Editing: Just read the report again. Here is the part I have a question about. I already know I have the cancer in my cervical spine. When he says similar abnormalities found in the calvarium, is that my skull? Now I’m thinking it’s also in my skull? I’m confused. Any help would be appreciated.IMPRESSION: HETEROGENEOUS BONE MARROW SIGNAL IN THE CERVICAL VERTEBRAL COLUMN WHICH MAY REFLECT NECK SURROUNDED AND FATTY MARROW. (I already know this is breast cancer here
SIMILAR BONE MARROW SIGNAL ABNORMALITIES ARE NOTED IN THE CALVARIUM.
0 -
Hi, I just wanted to say thank you to those who replied to me. I did read them, sorry for not replying right away.
I'm on day 7 of 10 WBR treatments. Like kikomoon, the first day seemed worst for me - terrible headaches and nausea. I'm now taking anti-nausea meds before each treatment and it hasn't been an issue. I started getting swelling/headaches yesterday, so I am taking dexamethasone for that. I'm feeling much better than I was that first night after WBR.
I start Xeloda and Tukysa next Wednesday. After that, I plan to beg my doctor for IT Herceptin for my leptomeningeal disease. That is certainly was scares me the most.
In the meantime, I'm playing the "planning for the worst, hoping for the best" game...
0 -
KBL, yay for the clear brain! I’m not familiar with the calvarium but google says it is the upper part of the skull. From what I’ve seen in other posts, mets to the skull are considered bone mets and I don’t know what to make of “abnormalities” but I’m happy to see that it doesn’t seem like they’re saying it’s suspicious.
Superdenovo, no need to reply, glad you getting rest and recovering well.
0 -
Hi KBL,
I have two lesions on my calvarium which is part of the skull and not the brain. Mine did not penetrate the dura which is the outer membrane of the brain, so that was a good thing. And yes, they are "just" considered another bone met - no brain involvement at all. They responded well to Chemo, Herceptin and Perjeta. They both shrunk and are now "stable" as are my other multiple bone and liver mets. I am fortunate that my cancer is HER2+ because of the success I've had with H&P.
I wish you well.
Nancy
0 -
Thank you, Mae and Nancy. I'm grateful it's not in my brain. Since it's lobular, I suspected it wouldn't be. I just don't know if this is what's causing my issues or not. I think the hardest part of this disease is never having an easy answer to anything that's happening. I always have to search and figure things out.
Mae, it's definitely lobular and in the bone and bone marrow, so I know it's mets. It's just whether it's causing me the symptoms I'm having.
I don't think I have lepto mets either, but I'm curious how that is tested for. I've had MRIs of my whole spine, which is covered in cancer, so is it an MRI that diagnoses lepto?
I am trying to go to Utah to be in a clinical trial for an FES PET. What I wouldn't do for the cancer in my body to light up on something.
0 -
superdenovo- that drug combo xeloda plus tukysa is wonderful snd does a great job. Xeloda is hard on some people do I suggest tge xeloda thread for lots of good info and support. I’m just on tukys but it’s been slowing my brain Mets down.
Good luck.
0 -
KBL, a brain MRI would show lepto too, it’s mostly about location with those. Anything found in the fluid canals/ventricles is automatically suspicious and a Spine MRI or lumbar puncture are typically used to confirm. Treatment is basically the same but prognosis is generally worse.
0 -
Thank you, Mae. It’s always great to get information from those who are so knowledgeable in an area. Much appreciated.
0 -
I just read about Leptomenigal disease. My RO made it sound like after radiation this would be gone and we would rescan every three months. But I just read that you only live 4 to 6 months after radiation. Now I am scared. I have seen both my MO and RO and neither of them mentioned this to me. Is there anyone who has experience with this? Is there a medication for this in addition to radiation?
Thanks
Julie
0 -
Julie, I know your dx of lepto mets is certainly scary, I highly encourage you to avoid prognosis stats. They are usually a few years behind and there are many treatments since those were reported. Yes, it is practical to put your wishes and a will in place, I had to do this when I received my Stage IV dx. That is the practical side of things. Do not spend your time counting the months, best thing I can recommend is go day by day. If you are mobile, go for walks to take the edge of the stress and help you deal with things.
I cannot speak to the drug side of things but there are things that do cross the blood brain barrier so that may be an option that can be discsussed with MO and RO.
If you are feeling well enough, do things you enjoy doing, get the practical stuff like a will and medical directives and just go day by day. If you are well, that is good, do physical activity to help the body and brain, it does help improve QOL because it strengthens the body and helps the brain so you can sleep, listen to meditation music at night as well, helps relax the brain. One day at a time, don't live thinking your dying of cancer, you are LIVING with cancer. That small change in thought process helps a lot.
0 -
Mara
Thank you. I'm just so confused. My MO was acting weird yesterday almost like she thought I knew now that I review our conversation. I am switching medications but not to one that crosses the brain barrier. Why would she not put me on one of those?
And the RO didn't tell me. She acted like this was no big deal and radiation would take care of it. It is very frightening right now. But I appreciate your words and they make sense.
Thank you
Julie
0 -
Julie, I faced the prospect of lepto several times and as recently as last week and although it was ruled out for me for now, I have accepted that it it likely. As a result, I’ve had a few conversations with my team in this and it’s very important to know that what you’re reading online is outdated, scary but outdated. WBR is potential the 1st option and there are chemos to try that seem to be more effective after WBR since radiation weakens the blood brain barrier enough to let some drugs through. Please reach out to your doctors for specifics and don’t let up until they fully explain the situation and plan.
0 -
Julie, I agree with Mae, get more information from your doctors including meds that cross the BBB for your type of BC and Mae is also correct, I was told my WBR left my brain open to receive the treatment I was receiving for a few months.
0 -
Thank you Mara and Mae. I did leave a message for my MO to call me and I will see RO today. I am glad you guys are Here!
Spoke to MO and I feel a little better. I do not have Leptomenigal disease. I have three mets that appear or have the shape of leptomenigal and MRI could not confirm or deny. So they are being cautious and doing the wbr. Starting havalan after radiation. Thanks again!
Thank you
Julie
0 -
Mae and Jjzn - I'm very, very happy to hear that leptomeningeal disease has been ruled out for both of you!!!
I just wanted to share my experience while it is fresh in my mind. I had Cyberknife to 6 brain mets at Stanford in April 2020. Since December 2020, one of the treated tumors started to show a ring around it in my brain MRIs that kept increasing in size. Radiation necrosis, if it happens, typically doesn't start to show until about 9 months post Cyberknife. Apparently it is impossible to tell on scans whether the ring is radiation necrosis from the Cyberknife treatment, new tumor growth, or a combination of the two. If there is suspected radiation necrosis, using Cyberknife again on the same location is not a good option as it will likely exacerbate radiation necrosis. After waiting and watching for 3 to 4 months, I decided to have the spot surgically removed last Monday. The doctors made an educated guess that it was at least partially tumor regrowth, and I didn't want to have to remove a bigger tumor down the line.
Thankfully, the surgery went well and I only had to stay one night in the hospital. Before surgery, I was told to expect a 2 night hospital stay. For two weeks, I'll be on a tapering schedule of dexamethasone to prevent brain swelling. So far I feel very normal, just tired in the afternoons. Being on dexamethasone does make it hard to sleep. After the first night, I was able to get by on Tylenol and am not even taking that now. I'm sure that the recovery depends a lot on the location and size of tumor removed, so I'm fortunate to have had a favorable location. Best of all, the pathology report says it was all radiation necrosis, so not cancer regrowth! If it were cancer, I would have needed further Cyberknife to the tumor bed. Surgery alone has a 60% recurrence rate.
I did not have to go off systemic treatment for the surgery. I'm on Trodelvy on a two week on and one week off schedule. I had the surgery during my week off. My last Trodelvy infusion was four days prior to surgery and my next treatment will be ten days after surgery. I followed the Trodelvy infusion with 3 days of neupogen shots to make sure that my WBCs and neutrophils would be adequate for surgery. Fortunately, my platelets and RBCs were adequate, so I did not need a transfusion prior to or during surgery.
Much thanks to Mara and Mae for sharing your experiences with surgery. Your support meant a lot! It's so wonderful that we can support and learn from each other as we navigate this scary rollercoaster ride of MBC!
Hugs and very best wishes to everyone for gentle and EFFECTIVE treatments!
Theresa
0 -
Theresa I am so very glad that it was necrosis and that surgery went well. I hope you have a speedy recovery. Thank you for sharing your Experience!
Julie
0 -
Julie - Reading back I see that you are ER+/PR+/HER2-. I'm similar, ER+/PR+/ HER2 low. Many ER+/PR+ patients are officially HER2-, but do have a low level of HER2 expression. If you are HER2 low (IHC 1+ or IHC2+) then you may be able to qualify for Enhertu which has evidence that it crosses the blood-brain barrier. Officially Enhertu is only approved for HER2+ MBC. I know one patient getting it from the manufacturer for free under compassionate use. I know another patient who was able to get her insurance to approve it. I was on it for 10 months on the DESTINY04 trial for HER2 low patients, but I believe that trial is now closed to recruiting. Trodelvy is another option that has evidence that it crosses the blood brain barrier. It is approved for triple negative breast cancer; however, my oncologist was able to get my insurance to approve it for me off-label. I think that Xeloda and some of the CDK4/6 inhibitors also have evidence of crossing the blood-brain barrier. Hugs and best wishes! Theresa
0 -
Theresa
Thank you for that info. I was just going to ask how you were on trodelvy and how it was working for you? How do I know if I am her 2 low. Would that ihc1 be on my foundation 1 report? I see I am tumor burden low. But I don't see those other numbers. Is that the same thing?
I was already on Xeloda and verzenio. Both only lasted a short while.
Thanks
Julie
0 -
Julie - IHC 1 or IHC 2 appears on a pathology report from a tumor biopsy. Alternatively or additionally, you may have a FISH test on a tumor biopsy to determine HER2 status. I don't know if it appears in a Foundation1 report, but Foundation1 is typically done on a tumor biopsy, so you should have a pathology report to go along with the tumor biopsy. Enhertu worked for me for about 10 months - it kept everything stable with some regression. I've only had 2 cycles of Trodelvy and will be scanned after the 3rd cycle. So, I don't yet know if it is working for me. Enhertu and Trodelvy have different targets, but deliver a similar chemo agent, so one might not work after the other. The target for Trodelvy is TROP2 which is thought to be heavily expressed in all subtypes of MBC. They don't even test for TROP2 before putting you on Trodelvy because they assume it is expressed. The TROPICS2 trial is evaluating Trodelvy in ER+/PR+/HER2- MBC. A patient who has not been on Enhertu would theoretically have an even higher chance of responding to Trodelvy. I have one ER+/PR+ friend who had stable to regressing cancer for one year on the TROPICS2 trial and she was heavily pretreated with other lines of therapy.
0 -
Theresa I am glad she had such great success. Anything over 3 months is a win in my book!. I am going to mention that at my next appt. I will look to see if I can find out about her2 low.
Thank you!!
0
