Brain Mets Sisters
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Hi everyone
I purchase 250 mg boswellia serrata tablets at the local Vitamin Shoppe. I started with one at bedtime and now take another in the morning with breakfast. No noticeable stomach upset. It feels like it helps with symptoms from the brain met.
Hope everyone has a good day!
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Spoke to my RO yesterday b4 brain zap #5, and he has never heard of boswellia.
For now, he prefers that I just stick to what I'm already taking: Atenolol for heart arrythmia and high BP from other meds SEs, dexamethasone (decadron steroid) for brain pressure and swelling, Namenda/Memantine for the coming neurological deficits from WBR, and the CBDs to protect the brain (YES, he OKAY'D the NON-psychoactive medical marijuana component!) He says they'll be adding more Rx's to the mix once I start back on chemo again, so he wants to keep the load as manageable as possible.
He wants me on the Altzheimer's stuff for at least 6 mos. No driving yet...prefers to err on side of caution.
Off to Bible study with the ladies in Newark...
L
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Hi Lita,
Here's some information on Boswellia (aka Indian Frankincense) you might want to share with your RO. This is from Memorial Sloan-Kettering's Cancer Center Herb Integrative Medicine website. Please note I'm not suggesting you take it, but it seems that it's something your RO might want to be aware of. Here's a link to the full information: https://www.mskcc.org/cancer-care/integrative-medicine/herbs/boswellia
Boswellia serrata is a tree prevalent in India, the Middle East and North Africa. The gummy exudate or the resin obtained by peeling away the bark is commonly known as frankincense or olibanum. Also known as Indian frankincense, Bowellia is used widely in Ayurveda to treat arthritis, ulcerative colitis, coughs, sores, snakebites, and asthma. The major component is boswellic acid (1), which was shown in animal studies to be a potent 5-lipoxygenase inhibitor with anti-inflammatory and antiarthritic effects (1) (2) (3). It also demonstrated cytotoxic properties (4) (5) (6) (7), and prevented intestinal tumorigenesis in a murine model (26). Essential oil of boswellia also has antimicrobial activities (24). Data from clinical trials indicate effectiveness of boswellia for bronchial asthma (8), ulcerative colitis (9) and osteo-muscular pain (36). However, evidence is mixed for its benefits for osteoarthritis (10) (11) and collagenous colitis (12) (13) (14). Boswellia was also investigated for its role in maintenance of Crohn's disease remission, but it demonstrated no significant benefit (15).
Preliminary findings suggest boswellia's effectiveness in reducing cerebral edema in patients with brain tumors following radiotherapy (23). Also, a boswellia-based cream was found to be effective in preventing skin damage due to radiotherapy in breast cancer patients (32). Other data suggest that a combination of boswellic acid, betaine, and myo-inositol treatment may help to reduce mammary density, a risk factor for breast cancer (33).0 -
Openmind,
Thank you so much! I copied and pasted the above into a PDF so I could attach and send it to my RO. I'm willing to look into it if he gives it a "thumbs up."
I have heard mixed opinions on the "liver" issues it might bring up, however.
L
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hello everyone!
I have been to this community for past 3-4 yrs. My mom who had stage 3 her2 positive bc was treated alongwith herceptin from 2014 to mid 2015. verything was fine upto April 2016 when mets to lung LN were found. treatment included docetaxol-herceptin & pertuzumab. however progression on same in 4 mnths. Biopsy revealed recurred cancer was Triple negative ie MTNBC. Radiation was done.
Feb 2017- multiple Mets to brain. 10 days WBRT done.
May 2017 - pet scan done revealed multiple mets to lung bones liver while brain mets regressed due to wbrt.
Capecitabine started from May end to 3rd Sept 2017.
Pet scan done on 17th Aug 2017 result was all regression along wih further regression on brain mets ( probabl due to capecitabine).
In next 10 days, weakness was found. brain MRI showed miltiple brain mets around 19, 15 less than 1 mm & 4 upto 1. 5 cm) and sonography showed adnexa mass.
Kindly recommend what treament can be made at this stage? any one gone through this phase of recurred multiple brain metastases an treated succesfully?
M-oncologist told we have lots of chemo options for below the neck cancer but nothing for brain mets.
He is planning for Carboplatin & temozolomide this time but has told that cannot gurantee about temozolomide benifits.
I am sure carboplatin will do its work below neck cancer since it is TNBC & genetic reports have highly recommended for the carboplatin.
pl. suggest what treatment can be given for brain metastases.
Urgent help required since tomorrow we will be discussing further plan.
I am from India.
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Vizula,
Hopefully someone will chime on here. I am VERY new to the brain mets scene...I'm still getting whole brain rads (have 3 more sessions to go), so I can't offer any sound advice.
I don't know if anyone here has ever had a SECOND session of whole brain rads. I do know that most ROs will only radiate an area ONCE because of the tissue damage that can occur with subsequent rad blasts. My RO said they can "cheat" a bit when it comes to radiating bone (they can go in from another angle) and possibly re-radiate. Sorry, but I just don't know enough about the brain stuff.
And to everyone else,
As more and more St 4 women live longer with BC, undoubtedly more and more of us will find ourselves in the 'brain mets camp.' It will just become a natural progression of the disease eventually. Case in point, I meet with a small group of MBC women in the Bay Area every other week. There might be 6-10 of us at every meeting, and FIVE of us currently have (or had - 2 passed on w/in the last several months) brain mets just from this SMALL group! One of the ladies said last week that she knows of even more women with brain mets who live further south and don't attend our meetings.
I don't know what to say about this. It makes me very sad and despondent that we find ourselves here. Once brain mets crash the party, the time table of our life's trajectory drops dramatically once again. No time for complacency. We have to try and live each day to the fullest while we still have the where-with-all to do so.
Felt pretty dizzy this morning - while sitting down too! Don't know if it's the rads or the brain mets. Hope I don't have to deal with too much of this later in the day. We're planning to go see Mozart's Opera, Cosi Fan Tutti.
MIght be a good idea to double down on my steroids this afternoon....just sayin'
L
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HI Vizula,
Sorry to hear of your mums situation. Do you mean the 15 lesions are less then 1cm? disease under 1mm would not show on any scan. WBRT should only be performed once, I have yet to fine a competent neurosurgeon or oncologist who would repeat this. If the total of the disease is less then 20 squared CM, then Gamma Knife can be performed. My wife has had 19 lesions treated over the past 18 months and they have virtually all gone now.
My advice would be to get to a neuro oncologist who deals with SRS ASAP.
Hope this helps.
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Thanks for your input, Freakzilla! That's important to me as a newbie to the brain mets arena. Most of my lesions are well over 1 cm, but if the WBR can shrink them down, maybe I can go back in and get Gamma knife to clean up what's left of some of them.
There's always hope, and thank you for helping me keep mine alive
.L
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Thanks Mara for remembering what I wrote about Namenda. I am still taking it daily after 3.5 years. No side effects so I figure, why not? I hear it's very expensive, but my insurance covers it 100%.
Regarding questions about repeating WBR, I don't think that is possible. However, my Rad Onc told me that I could do gamma knife if I have new brain tumors. She specializes in breast cancer brain mets at UCSF. I don't think there's anyone better. She told me the first time I saw her, "We can keep you alive for years. First we will get rid of all of your tumors, including the ones that are too small to see on scans, using WBR. Then, if new tumors pop-up later we will get them with gamma knife." So far nothing new has shown up. Knock on wood.
I wanted to share a New Yorker Magazine article that was shared by someone in my BAYS (Bay Area Young Survivors)support group. I think it's cutting edge regarding metastatic cancer: Cancer's Invasion Equation.
Hugs, Susan
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Susan so nice to "hear from you" - nice to know you are doing ok. I did want Dani to have WBR, exactly a yr ago, Neuro Onco advised her, but RO said no, she was concerned Dani would not be able to take care of her children, which true it's her reason to live, BUT, anyway she won, Dani felt she would do well with rads. And one other reason RO did not want is that she told us there was no going back, and knowing how things go w Dani, she felt it would not give her the opportunity of having rads for the mets that would for sure come back.
Susan just yesterday s/o gave me that link, incredible. Dani keeps saying she knows it's all a farce, the medical community has no idea what they are doing. Seems very true.
Lita counting down with you.0 -
Mom: Forgive me, my whole brain rads are confusing my brain...did Dani actually have WBR or not? From reading the above post, I'm thinking she did?
"BUT, anyway she won, Dani felt she would do well with rads..."
I certainly would HOPE that Dani had the rads done back then. If she didn't, the damn tumors would just keep on growing, spreading and wreaking more havoc. At least that's what they told ME would happen if I chose not to do it. I'm still having some dizziness and whooshing in my ears, but it's a bit better. Naturally, the steroids are probably helping with some of the symptoms, too.
Susan, your post REALLY encouraged and uplifted me! Two weeks ago, I thought for sure I was a goner because of these damn 20+ brain mets (heck, I still might be...all my 'below-the-neck' tumors have been running amok without ANY chemo for over a month now, but I'll be starting up on Taxol in two wks). You have instilled a new HOPE in me. I may still be here in six months after all ;o).
And, of course, Dani inspires me, too. She's such a trooper!
Thanks to ALL OF YOU who continue to post here.
Hey, Wanda...how are you doing now that you're done with your 20 sessions of WBR?
Off to Session #9 in a few minutes. Tomorrow, I plan to bring my little bell with me and RING THE CRAP OUT OF IT! As Stage IV women, we will always be in some type of chemo/Tx, and we'll never get to ring "the end of chemo bell," but at least I'll be able to ring "the end of WBR bell" and I'm really looking forward to that.
Blessings, everyone.
L
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My cancer has a big gong and both times I finished rads for breast then brain, I hit it with all my might. Felt good. Glad you will have your bell. Enjoy.
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So, ladies, I spoke to another RO this afternoon after Session #9 WBR. I specifically asked her if WBR is ever used a second time, and she said, YES, IT CAN BE, but only in VERY LIMITED CIRCUMSTANCES. She said that one certainly wouldn't want to do it within 6 mos of the first WBR sessions, but there have been instances where it has been used. Naturally, the person will face even MORE neurological dysfunction, so that has to be taken into consideration before proceeeding...weighing benefits to risks, etc.
Primarily, when new mets come back to the brain, they prefer to treat them with cyber knife or gamma knife, but sometimes this isn't possible, if, say, later on down the road you end up with 15+ more of the little buggers. Once again, WBR would probably be one's best option. She said they would also take the overall health of the patient and their current mental capacity into consideration before proceeding with a second series of WBR. I asked her how many "greys" (units of rads measure) they were giving me, and she said it was 30 greys per session, so I'll have a total of 300 greys when I'm done.
So tomorrow is the LAST ONE!
Goodnight, and may we all sleep well for a change,
L
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Lita she did NOT have it. What I meant is both RO and Dani won. RO convinced her it's not in her best interest. But because of Neuro Onco the next day I was organizing Radiation schedules for Dani asap.
RO on the other hand, is very conservative, she was scared to mess with Dani. She is chief of RO but she feels so bad for Dani, that a few times I had to be very specific and say it's ok, make her bald, do what you have to do. Or radiate again the C2, try a different entry BUT do it.
And yes, she had various radiations through the year, one by the cerebelum, but this is what was advised at the time.
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Ok, Mom, thanks for clearing that up. Good to know.
The RO said I could possibly have other blasts of rads to very specific parts of my brain in the future, too. I have a couple of REALLY big ones in my cerebellum and they are both about 2 inches in size (4+ cms). They normally only use Cyber knife for tumors under 3 mm, but mine are WAY bigger than that, so I was told Cyber knife wasn't an option at all in this case. So, Gamma knife might be another option down the road if we have some future clean up work to do, or what I wrote up on top about some WBR zaps again.
This other RO said that I will probably have to have regularly scheduled brain MRIs for the rest of my life now. They are guardedly optimistic that all this radiation should buy me a little more quality time. I'm already planning on where we want to go next as a family. I can't book anything until I get my Taxol chemo schedule together.
So that's it for me,
L
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Lita you go girl. Well you could start doing your homework about the getaway, and then actually book what you have to when you have your schedule from Taxol.
yes, Dani had Gamma and SRS to the area already. Both are quite a spectacle with those masks, but it's doable. There are two by the cerebelum, one they were able to zap the other is really very much in the border, so they are watching it, they are scared to touch it.
Yes, and MRI is done every 6 tp 8 weeks. This time will be longer due to the trial. I have more nails to bite, u know what I mean.Waiting to hear your bell!!!!!
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Lita,
I would be extremely worried about repeating WBRT.
I think you mean the maximum size for Gamma Knife is 3cm per lesion and not 3mm. Over 20 lesions have been treated in a session before. It's more to do with the total tumour volume then amount of lesions. My wife had 11 treated in a session last May and now they have all gone. Two of them were 2cm.
Gamma Knife is a form of SRS.
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Totally bummed this evening.
Rest in peace JS...she transitioned home to the Lord this afternoon.
She was in one of my live metastatic support groups and had WBR 2 mos ahead of me. I just saw her 11 days ago at group. She went quickly.
When it's my turn, I hope I go just as quickly...straight into the loving arms of Jesus.
Sorry for the downer post, but this was not something I was expecting just as I've finished my own rads sessions. (BTW, I have WAY more soft tissue, organ and bone tumors and lesions than she had...)
The clock keeps ticking.
L
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Lita,
I can only offer prayers and hugs!
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Thanks, Kaption.
Question: Did anyone kind of lose their taste buds after WBR?
I've noticed that everything tastes bland now, and I have to force myself to eat. The brain does process smells, tastes, etc., and we know that WBR does not discriminate between good cells and bad. I guess this is just another thing that I'm going to have to endure for a while.
But, on a more positive note, I'd rather lose a little taste sensation than lose my ability to type and converse in intelligent sentences.
Slowly starting to taper off the Decadron. I'm dropping one mg a day for 3 days, then another for 3 days, then another mg, etc. They will be pushing steroids in my Taxol infusions (at a much higher dose than I was ever taking pill form), so we'll see how I do with that.
L
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I found that my tastebuds were off during WBR and a few weeks afterward. They do comeback and you should find this for yourself. If they are still off months down the road then the taste issue would be from something else.
Regarding the steroids while on chemo, they are not as bad as taking them everyday. I normally found that I felt really good the days I had them and then there would be a day or two crash. Crash for me meant feeling like I had the flu. Once I recovered, I felt better. You should sleep better on an overall basis if not having to take them everyday.
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Lita,
As Mara said, WBR makes food taste like cardboard but it doesn't last long. I lost 30 pounds (132 to 102) going through WBR. Gained back 18 pounds since then. I thought I should write a book, "How to lose 30 pounds in 1 month!". :-)
Hugs, Susan
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Hello all,
I was diagnosed with bone mets to the spine and femur last month. MO did brain MRI as precaution, and called me yesterday to tell me that I have 3 lesions in my brain. I have been reading this thread and am so thankful for all the insight and sharing. BCO has been a life line for me since my IBC diagnosis in 2014. What I know so far. The lesions are small 1< 2 cm 1< 1 cm. I have appointments with my MO and RO on Thursday. My MO is also consulting with the Neurosurgeon I saw when originally diagnosed with mets to my spine. This is scary, but you have all given me hope. Hugs to all!
Joy
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Rosie, they may be able to go in there with Gamma knife radiation and clean those right up for you.
At least you don't have 20+ like me.
I told my RO that I think they should just automatically do brain scans on any woman who is st 4. My 20+ have probably been there for months. Shoot....maybe even all along. If we had found them when they were smaller, I would have had more options.
Oh well...
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I got good and bad news from CT scans and MRI. CT scans are still showing NED from the neck down so no changes to the drugs I am getting. Bad news is MRI shows some new nodules. Is either a new spot of cancer or radiation necrosis. I am hoping it is the cancer since I could get localized treatment if it is. Radiation necrosis could be very bad as the only course of trying to slow down the brain swelling is to do steroids which would NOT be OK for me to stay on forever. I know that Avastin is used to treat necrosis BUT am not sure it would be available to me in Canada. This sure does suck. Nothing is growing at the moment since I am not having any brain issues but am pretty scared. I can't live on steroids as I get almost suicidal on them and don't want that. I really hope it is just a local recurrence of the original brain met. That would not scare me as bad as necrosis. Keeping my fingers crossed. Don't even get to meet the new doc til next Thursday. Also, my cancer centre dropped the ball. They called to tell me I had this radiation appointment BEFORE I was told what was going on in the brain. Was very upset about that.
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Mara- first hugs.
Second, can they just monitor it without you having to take or up the steroids? Or are you having symptoms such that steroids and an immediate treatment is necessary? I am sorry to ask as I can't keep up with everyone's individual status the way I used to. I apologize if I am asking a stupid question.
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You are not asking a stupid question. No symptoms yet. I would wait until symptoms and decide from there. I hope it is just local recurrence and go from there with local treatment.
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I had to watch a spot fir local recurrence fir 3 scans so about 8 months. After that it was decided that we needed to know what it was. I had a crainiotomy to get whatever it was out. It was just necrosis. That was in feb 2015. I have been good ever since.
I hope that you remain symptom free and you require no further treatment
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Thanks for that LFF, that makes me feel better. I just imagined the worst.
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Mara,
Sorry to hear that. Look into hyperbaric oxygen therapy. It can help with necrosis. It can also be tissue irritation. My wife had this in two areas one 1cm and the other 5mm. They both resolved over time.
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