Brain Mets Sisters
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Here's a brief update. I have been so lucky to learn from all you wise ladies! After researching WBRT on this site and MD Anderson's website, I learned the treatment and the radiation oncologist were not right for me. I have since had a form of radio surgery that lasted only 45 minutes (vs 3 weeks of WBRT). I have been told it takes 3 months to see whether these treatments were effective in treating the brain mets. Since my brain mets were discovered when I passed out, I am on Keppra twice a day. The side effects are tough. If I go beyond 12 hours or I don't eat some food within a 6 hour time period, my left hand and arm start shaking and I begin having a seizure. But the minute I drop a Keppra in my mouth, the seizure stops. It's very scary.
I also just finished my first 14 days of Xeloda. After researching Xeloda on breastcancer.org I prepared for it as much as possible. Also to help with Xeloda and Keppra, I have visited an acupuncturist weekly. After each treatment, I feel better.
I have also been researching the issue we also face and that is when is the right time to quite work and go out on long term disability. I am currently on FMLA until the final Monday of March. I love my job but my boss is crazy. So far, I have not been successful in transferring to a different boss. My job keeps my mind engaged, I like my co-workers and I feel it gives me a purpose (maybe wrong assumption). Both my MO (he's been my MO since 2012) and I are afraid being out on disability will not be a good fit for my personality. But being on FMLA for over 2 months has been good. There are some days when having TNBC and mets (brain, liver, bone) is overwhelming and other days when I feel all will be okay.
I would be so grateful for any wisdom others can share. Thanks for much.
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Milo,
You are right: working keeps the mind engaged, gives you purpose and maintains one's quality of life. I wish you to find a way to deal with your boss issue. Regarding acupuncture, I'm not aware it is beneficial for Xeloda or Keppra side effects. Do you have any literature on this subject?
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Milo I've seen articles that talk about the effects of acupuncture. In fact my oncology NP suggested I try it but right now I can't take on another out of pocket expense.
Working and having purpose and interaction is important. I'm at the same cross roads as you but I don't want to take the pay cut right now.
I'm having a better cycle and I had a "normal" weekend. I started taking boswelia and have upped my fluid intake. Hopefully the next two weeks I will be doing ok.
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Milo, I'm also on Keppra. Has your neuro looked at adjusting your dose? It sounds like your dose it too low if you are having seizure-like side effects. When I started on Keppra a year ago, it took about 6 months to get my dose right. I've felt great since. Boswellia also helps. It's an herbal supplement that helps with inflammation in the brain (and other parts of the body). I take it everyday with my Keppra.
As for work...I hear you on that struggle. I'm still working full-time, but I often wonder for how much longer. I am self-supporting, so I'm trying to save like crazy to be off the necessary time before I can file for LTD. For now though, I enjoy my job and my co-workers and as it's a physical job, it helps keep my body strong.Lauralind, glad to hear you had a good weekend.
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Something supplement-wise I have been on was causing too much blood thinning. I've barely taken Omega-3 (Pro-Omega) but taking it a few times a week might have pushed my body over the edge. My scalp kept weeping blood after the last two infusions. I think Boswellia Serreta can thin the blood and possibly Nei Xiao (Chinese tea pills), DHA, and I'm not sure about Bereberine, an Oregon grape extract supplement my naturopathic onc gave me. I backed off supplements for a week and I'm going to shift more towards Chinese herbs, and general supplementation. Hopefully my body corrects itself.
I'm getting my PET/CT on Thursday to look for systemic disease that might have escaped from the CNS. Friday I get my brain and spine MRI to check for initial response to partial brain rads and look for further LM. I'm doing quite well though, still issues with proxemics, some muscle twitching mostly in legs (not noticeable to others), and my eyes are tired at night. I'm trying to stay neutral and not fret about what the images will show but to be honest I'm freaking out. I sure hate this part. My activity level has increased over the past two weeks which is good too, I even vacuumed on the weekend.
Hope everyone is hanging in there.
Ann
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Agness/Ann,
My wife and I were considering Boswellia after you and/or someboody else recommended it. However, after reading that it is for swelling, and my wife is already taking Keppra for it, I need to check with the neurologist at the next visit.
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gciriani, I take Keppra with Boswellia. My neurosurgeon recommended it after my craniotomy last year and my neurologist supported it. I've had no adverse SEs, if anything my 51 year old joints feel a lot better with the Boswellia than without it. It really helps with inflammation throughout the body.
Ann - good luck with your scans. The waiting is nerve racking.
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Thank you all for the information on this board. I have hesitated to post here because I do not have an official brain mets diagnosis. I am a 2013 Her2 + survivor. Some neuropathy and other random symptoms led to an almost accidental finding of a growth on my brain stem. It is crazy how difficult it is to get a brain MRI. Anyway while the growth appears to be benign, my health history has lead to it being treated as a possible met and I am being treated at a large cancer center. The location makes it impossible to biopsy. I had 5 rounds of low dose radiation, completed early Feb and I have been slow to recover. A few questions: can someone offer insight in tapering off the dexamethasone? I feel I should be long off of it but every time I mentioned an SE my doctors played with the dose. I feel like I went downhill within days of starting it but did not do the research right away. I am still dizzy and lethargic and have significant leg muscle weakness, problems I did not have prior to starting it. I am down to 2mg a day.
Also I tried Boswallia last week but got very sick. I stopped it but now I am wondering if the sickness was dexa withdrawal. One of the doctors had me take 12mg one day and then drop to 1mg for 3 days and then stop altogether.
Lastly, all of my additional scans were clean and my tumor markers remain low (I know TMs are not always reliable). Xeloda has been recommended by the radiology team but my MO is not convinced, would that be appropriate? One of the cdoctors wants to do a lumbar puncture and I am not sure about that either.
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Rmanmom,
I posted my my tapering thoughts and experience in this comment (this thread 16 January, 2016): https://community.breastcancer.org/forum/8/topics/777599?page=138#post_4612784
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That seems like a really fast tapering schedule for dex. I had to take 4mg every 6 hours then 8 hours then drop the dosage and then increase the frequency over a week. I was getting 1/4 tab when I finally switched over to Boswelya Plus.
Boswellia is also used to treat arthritis and my bone scans before and after chemo showed that chemo caused pre-arthritic changes in my shoulders. It hasn't caused me pain but since the supplement covered the ground for both brain tumors and arthritis I decided to use it. It doesn't take the place of needing dexa I've found but it does seem to help generally.
I had a lot of muscle twitching earlier today and I went for an IV vitamin C infusion, the first in a couple of weeks. I am amazed but the twitching majorly subsided after treatment. Can vitamin C really help out a damaged cerebellum that fast? 25 mg of vitamin C is a lot more than one gets from the diet so who knows. I have no side effects from getting it, my body seems to just suck it all in and use it.
I'm off to bed. Night night.0 -
Thank you gciriani and agnrss for your information on tapering and Boswellia. As frustrated as I am, I am going to taper very slowly, I want to be done with it. Dealing with much dizziness and general brain fog, especially first thing in the morning.
Very interesting about the vitamin C. Yes, I think it can work that fast.
A bone density scan I had last Fall revealed osteopenia, apparently Tamoxifen did not strengthen my bones. I was taking calcium with vitamin D and magnesium but I stopped everything due to a very queasy stomach.
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I got my brain scan done but the spine was ordered or scheduled correctly so I have to go back next week and get shot up with gadolinium again. For this they have me a $5 gift card to use on site. Really lame service.
Do you ever get queasy after having gadolinium? It's either that or the Anericano I had this morning was too strong for me. I'm a total lightweight when it comes to coffee. It might have been a double when I asked for a single.
Did you see the new ONT-380 trial that is recruiting for HER2 brain mets patients?
Study of ONT-380 vs Placebo in Combo w/ Capecitabine & Trastuzumab in Patients w/ Metastatic HER2+ Breast Cancer - Full Text View - ClinicalTrials.gov
https://www.clinicaltrials.gov/ct2/show/NCT026147940 -
Agness/Ann - Not sure if this is similar to what you are experiencing, but here's my two cents. Somewhere along the line, I developed brief, transient nausea with gadolinium. It was terrible with the first injection, lasting maybe 20 or 30 seconds, milder with 2nd injection. It always passed and thankfully I never actually threw up in the MRI. Don't ask me why the 2nd dose was less intense than the first, the tech said the doses are exactly the same. I tried taking a zofran before the scan and it made zero difference, so I basically just gritted my teeth, tried to visualize something pleasant like lounging on a beach in Hawaii and managed to get through it. I honestly think it is one of those things where us gals who have a million scans develop sensitivities to the contrast.
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Gcirani- in addition to Bestbird's MBC Insiders Guide that mentions acupuncture, here's some of the websites I used in my research
www.cancer.gov/about-cancer/treatment/cam/patient/acupuncture-pdq
www.ncbi.nlm.nih.gov/pmc/articles/PMC2642987/
www.breastcancer.org/treatment/comp_med/types/acup...
www.medicalacupuncture.org/For-Patients/Articles-B...
Hi Everyone and thank you for your comments. As a further update, I visited a Neuro-Oncologist this week and in the big package of info she gave me, there is also a section recommending acupuncture. She recommended I l also take vitamin B6 100mg morning and night along with gabapentin 100mg, and she is hopeful this will help prevent seizures as the Keppra is doing yet counter its effects.
I also discussed going back to work vs short term and long term disability with a social worker at my cancer center. I still don't have a clear path on a . Although I have not yet checked it out, she referenced a website called
www.cancerandcareers.org
It is surprising that so far no doctor has recommended Bosweilla to me. I will check into it.
I read the Radical Remissions book and I completed some of the ideas in the book. On my birthday, I sent out apology letters (hard copies via USPS) to my mom, brother and sister apologizing for my hurtful actions, I have done a massive cleansing and purging of my stuff and sent out numerous items to relatives that I knew would enjoy the items. I felt better after doing these tasks.
I hope and pray that we all have more good days than bad days as we struggle with MBC.
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I think I have figured out the cause of my faint dizziness and muscle twitching! I cut back on my supplements last week because the skin over my ommaya port was bleeding and not clotting well after gettingIT Herceptin. My neuro-onc and I suspected it was my supplementation. I think I overdid it the other direction and so my symptoms increased.
With a low-carb diet you can get muscle twitching from electrolyte imbalances. Thank goodness for the gal on another board who mentioned it to me. I took Concentrace minerals plus and potassium iodine supplement in my water yesterday and didn't have the twitching this morning. I think this also explains why my twitching subsided after getting IV vitamin C -- my IV bag also contains targeted nutrients.
Dizziness can be a sign of cerebral edema and it dawned on me that I've been off low-dose Dexa for a few weeks but then I cut back on Boswellia too as it can cause blood thinning. I took 1/4 Dexa pill this morning and the dizziness greatly lessened. Doh!
I think it is omega-3 supplementation causing the blood thinning issues; it's something that is supposed to be good for brain healing but I think it is too much for metabolically or something. I'm going to discuss all this with my naturopathic onc later this week.
Updates anyone? How are our WBR members doing?
Ann
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I don't think I shared this link yet:
Feed Your Body, Feed Your Brain: Nutritional Tips to Speed Recovery
http://m.brainline.org/content/content.php?id=4083
Rember that brain rads and surgeries causes brain trauma. Typically docs are looking at short term effects and risks to health but I've yet to find anyone on my allopathic medical team who suggested anything other than rest and nothing specific in that directive.
Here's another really interesting one, coming from a stroke patient's blog -- meditation is brought up again as a way for the brain to rewire itself. It is through an awake deliberate meditational practice that the body increases the amount of down-time of the CNS where it can do repair work. From everything I've been reading it is a matter of just doing it and gradually building one's practice.
http://mycerebellarstrokerecovery.com/2015/01/07/m...
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So far so good. The PET from the top of my head to my knees only showed the area of inflammation and disease where it was being treated in the back of my head in the posterior fossa. Nothing showed on the CT scan and my brain scan showed disease diminishment.
I still have one more scan tomorrow of my spine and I'll see the new neuro-onc to discuss the findings.
It's the first time since last summer that my brain scan has revealed disease remission.
It's been a real roller coaster this week but given all the other lousy scans I've had the fact that there wasn't obvious disease blooming outside of the rads treated area is amazing. I'm feeling a bit speechless about it.
XO
Ann
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great news Agnes
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That's fantastic Agnes! So happy for you. Were you able to go do something to celebrate?
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Great news Agness!
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I'm feeling really frustrated with the medical/insurance world today.
I'm on monthly Lupron injections so that we can move to an AI. My next onc appointment and shot is scheduled for Monday. Today the pharmacy, that my insurance company dictates provide the Lupron, called and said the insurance company won't authorize the shipment of my Lupron without more detailed information from my onc's office. So I had to call my onc's office and ask for them to please take care of this so I could get my shot on time on Monday. I feel like it's one thing after another with my insurance lately. It's a good plan, too. I even spoke to my HR at work to see if they could contact the insurance company regarding this, and the ongoing issues, I've been having with them, but they said there was nothing they could do on their end.
I have a brain scan coming up on the 28th and I'm just waiting for the insurance company to deny it. They denied my last PET. It took my onc's office 4 months to get them to pay for it.Sorry for the rant. Just a frustrating day.
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That is so annoying Goodie! Sometimes the most frustrating things that we have to deal with are not the treatments themselves, but the everyday tasks that goes along with them. Any word back from your onc's office? Do you go to a big cancer center? The majority of them have separate insurance departments that you could try calling directly?
I have also been having a really hard time and have been holding back tears the last few days. My hair has been significantly falling out since my SRS, with no signs of stopping. It is now MUCH thinner with at least 3 noticeable bald spots. I can no longer go without covering them and had to wear a scarf today. And will have to move to wearing my wig again to work on Monday. This is the third time I am losing my hair (once a teenager, once in 2014 from Taxol, and now) and it was just getting to a point where I was at a length I was comfortable with. In another month or 2 it would have been a chin-length bob. I know it is just hair and I would much rather have my life than my hair, but having to go through this 3 times and twice in less than 2 years, is beyond traumatic. My friends and family are trying to be supportive but there is really nothing that anybody can say...
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Becs, I want to give you a hug.
I'm having a hard time too, not with hair loss but with low energy levels and ongoing nausea from chemo. Silly me thinking that this chemo would be easy because it's oral and not infusion...it's worse because my stomach doesn't have time off to recover. I started back again at work only working 5-6 hours a day and I go home, nap for a few hours, eat whatever I can keep down (mostly junk unfortunately) and go back to sleep. I want my energy back. I want my healthy stomach lining back..
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Becs I'm bald from WBRT and it was the 3rd time for me and it wasn't easier than the first. Hugs to you. I'm so sick of scarves hats etc.
Ann that's awesome !!
Bad that's my problem too. So frustrating. I've been very depressed lately with my total lack of energy and I mean staying in the bed most of the day not just not feel like doing anything. So them I lie there and think will this isn't worth it this isn't living. Normally I love spring and I love getting out sign them all of that stuff but I don't have the energy to do it so it's making me more depressed.
On that note today at my visit I decided to not have an infusion today. I am taking a 3 week break. Then I have my scans and we will decide what to do based on those results. I'm a bit nervous but I'm hoping to give my body a little chance to recover some.
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(((((Laura)))))
It sucks. I want to swim, cycle...or at the very least clean my apartment and then sit outside and sketch trees
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Ugh for hair loss, low energy and bad stomachs. I hope you can get a break.
My hair loss is all in the back and you can't see it but I worry about it. My port in my head is really subtle too being the pediatric size, they usually are placed for late stage disease where they are also doing WBR and so they are very visible, I don't look like an LM patient.
My spinal scan was good as well with no sign of drop mets. It's really good news. We saw the imaging and everything is diminishing in the treated area, the LM is going away. The neuro-onc was comfortable enough with the progress to wait two months for the next scans. I'm going to continue weekly IT Herceptin at 100 mg since symptomatically it has shown that it affects the cancer (by symptom alleviation after I started IT Herceptin). Gradually we might taper it down but not yet.
The cancer cells were extremely mutated my Foundation One test showed and I spoke with a researcher who was presenting about pregnancy associated breast cancer (PABC) at Fred Hutch in Seattle yesterday. She said more mutations is a good thing because it is easier for the body to see the cancer as other. Evidently it is during breast involution (down regulation and tissue remodeling of mamma my activity) that creates a unique foothold in the body that if cancer can get in it easily starts a metastatic cascade of evading the immune system. This happens post-parting in the breast and liver. Listening to her talk I felt lucky that my disease hasn't been worse.
I should post more about PABCon the boards.
I'm going to keep fighting but so far so good.
Much love,
Ann
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My wife is on Levetiracetam (brand name Keppra), to prevent seizures, and we asked the neurologist to switch her to a different drug, to lower side effects such as agitation, anxiety, emotional liability and like. He switched us to Lamotrigine (brand name Lamictal), but we are learning that the phase out of Keppra and the phase in of Lamictal is long (eight weeks). Also we are told that she shouldn't drive during this phase, for increased danger of seizures. Does anybody have experience to share with these drugs?
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Giovanni- I'm not familiar with anti-seizure meds but did find this discussion that might be helpful:
http://www.epilepsy.com/connect/forums/living-epil...
Has she tried a low carb diet at all? They use a ketogenic diet for epilepsy sometimes. I know you are doing a lot diet-wise but cutting out grains, legumes, and sugars/simple carbs really does seem to make a difference to the body
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Giovanni- I am actually meeting with a neurologist for the first time since my brain mets diagnosis tomorrow. I have been on Keppra, prescribed to me at the hospital, but I plan on asking him to lower the dose or switch to something else. It has been giving me extreme fatigue. I go to Sloan Kettering in NYC and the doctor that I am seeing actually specializes in patients who have had seizures as a result of brain mets (not specifically breast cancer). I'll report back as to what he says.
My MO did teach me something interesting last night. I have been having extremely low platelets, which I just assumed was due to chemo. When I first checked into the hospital in February they were 41! And then post radiation, they were 82 and had to hold off chemo for a while. My MO said that 40% of your bone marrow is actually in your skull, so when the skull gets compromised, the marrow stops cell production. So my platelet count was low when I checked into the hospital because of the brain swelling and pressure on my skull, and then obviously post radiation. Just thought that was fascinating!
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Becs511, thank you. I'll await your feedback.
Agness/Ann, thank you for the link. It's good feedback, but focusing on epileptic patients; perhaps as Becs suggests, anti-seizure drugs for brain-mets may need a tweak.
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