Brain Mets Sisters
Comments
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Hi, surfdreams, your post makes me wonder. My DH commented the other day that we were both getting hard of hearing and mumbling. The comment came shortly post-WBR. I figured mine was "just" brain fog from all the treatment, but maybe it was the WBR.
xoxoxoxoxox
Calico
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Hearing loss is a common side effect - but I'm hoping someone will come along to say that it's temporary and will get better...... but if it's permanent, it is, and I'll need to see an audiologist. One more thing......
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Hi everyone, I have not had WBRT (yet) but my RO said that it might happen but he said I could take Benadryl. I wonder if that will help. He said it would not be permanent, but who knows how long that might last. I also read something online (I have to find it) that said it could be the earwax hardening due to WBRT. I wonder if an ear wax sofener (drops) would help. My son had this happen after he had tubes placed in his ears at 18 mos and at 4 years old the tubes had not dropped out because they were lodged in the wax. instead of doing surgery to remove them, they gave him rx ear drops. I hope this helps. My best to all of you.
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I've only had GammaKnife, not WBRT, but my RO recommended taking the herbal supplement Boswellia to help with possible inflammation and the SE from it. He said they are seeing some great results with it when compared to those that are on steroids. I've been taking it since March and have noticed a huge improvement in quality of life in general. I've had trouble with my back since 2000 (non-cancer related) and this supplement has greatly decreased by day to day pain from inflammation in my back. I'm on Keppra and Tamoxifen and neither interact with the Boswellia.
As to the hearing loss, my met and GammaKnife were on my temporal lobe. I've noticed some hearing loss since the surgery to remove the met and then the GammaKnife follow-up. I still passed my hearing test for work, but I notice that I have to listen closer to what people are saying, especially in a load area (like a restuarant).
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Goodie16 - how much of the Boswellia do you take daily?
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My RO said as close to a 1000 mg as you can get. The brand I bought is Nature's Way and take 3 pills, 330 mg/each, a day.
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I had hearing loss before cancer - a misspent youth at loud concerts perhaps. It got worse last year but no-one wassure if it was chemo or WBRT. Good news is that 12 months later, it has improved 20% according to my audiologist
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thanks for all the information girls. I ordered some Boswellia and a cheap hearing aid type of thing off of Amazon this afternoon. The hearing loss seems mostly to be in my left ear. My brain tumors are on the right side, so all of my losses of motor function, etc. have been on my left side - so maybe the hearing is part of that too. Sometimes, it has a rushing kind of sound in it - but mostly, it's just acting like it's clogged up. It's not ear wax, as I had my doctor look in it, and he didn't see anything of concern. After the WBR and a round of steroids, the fluid around the tumors and the tumors themselves have dimished - a good thing for the pending gamma knife next week - they were almost too big for gamma knife when first identified, so the shrinking is a good thing. Most of my side effects of loss of motor function on the left side have improved a lot, but the hearing, if anything, has gotten worse it seems. Hoping that the Boswellia helps!
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I was looking into Boswellia as well. My friend's wife used it when she suffered from glioma. I am going to discuss with my naturopathic oncologist tomorrow.
Have any of you tried intrathecal targeted therapies with herceptin/Perjeta if you are HER2?
Today I had the grand news of having mets to the rib cage too. My disease has been basically uncontrolled this whole time. My PET scan on Monday might present more bad news.
I'll seize each day but man, my poor kids and family. Not what I wanted to share with them of myself at all.
Ann
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Ann, I'm so sorry to hear your news. Geez, can we get a break? Haven't we been through enough? I really hope Monday's PET is not what you are anticipating. Btw, how are you feeling?
Boswellia sounds good. I will need to look into it.
I just asked my MO for a script for metformin. I have not startedit yet and can't remember any of the research I did on it! My brain is overloaded.
As for IT herceptin, I thought it was only being used for leptomenengeal mets. I'm HEr 2+ but my onc says I don't have it in my CSF. I think the drugs go directly into the CSF and not the brain. But I have not had my CSF tested. I should ask again.
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here are some intrathecal links I've tracked down:
http://www.empowher.com/epidural-anesthesia/conten...
"IT 150mg herceptine and 50mg hydrocortisone every week, and IV herceptine 6mg per kilo every 3 weeks. It works. No reservour required, it can be done by lumbar puncture. However with a reservoir it would be easier."
https://community.breastcancer.org/forum/8/topic/786790?page=4http://www.her2support.org/vbulletin/showthread.ph...
https://www.google.com/search?q=ommaya+reservoir&ie=UTF-8&oe=UTF-8&hl=en&client=safari
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I'm healing well, going for walks, balance is returning, scalp is healing with no noticeable scar.
Im feeling really sober though. My parents know the news but no one else. I haven't talked to my kids all day and they are probably having a blast at our weekend house but after 9+ years of pregnancy and mommying I feel their absence acutely.
I wanted to get stronger again. I think I might be too weakened by treatment and disease to restore my life force, my Jing.
I was sick for more than a year before I was diagnosed that much I know but I might have been sick for years already without knowing it. I was weaning my second child and terribly depleted when they staged me February 2014. They thoughts I was metastatic then but found no systemic disease.
I do have this: my brain met was so acute that I could have died in my sleep. That would have been worse than what is to come. So I escaped death and I do have this day and tomorrow until my infinity runs out.
Thanks for your compassion.
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letranger how are you doing? Such a lot of WBR to deal with. What would the metformin do?
Hey surfdreams - I hope the online meds help buckets for you.
Goodie - yeah, the steroids are bad for increasing brain glucose (hello sugar and cancer)so the Boswelia sounds an awesome alternative.
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ann, I hear you. And I hear the fatigue in your post. are you still feeling weak?
Try this:
Grate some ginger and boil in pot. Add tumeric powder or grate some fresh tumeric. Add honey to taste. Drink it everyday. I find that it gives me energy and ginger is supposed to reduce inflammation. I also drink Japanese sencha tea. Take your vitamins and supplements as advised and try to regain your strength. I know it's hard. I'm dealing with it, too. Fighting this mentally is draining. But last week before I found I out I was progressing, I was doing fine! I felt fine. So I think some of it is mind over matter. As soon as I heard I had progressed, the fatigue set in and I feel like a sick person. But you've just been through a craniotomy! It's been a scary time for you.
We also did not share my recent progression (since Nov 2014) and today we told some family and I feel a weight off my shoulders! Of course, you'll share when the time is right.
Also listen to guided imagery before you go to bed. If I listen to it, I sleep before the 13 minute track is over! If you are interested I'll send you the link.
I hope you get a good night's sleep.
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Ill take my supplements before I rest. Promise. Thanks for checking in.
XO
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Ann - I'm so sorry to hear of your progression. You're in my thoughts as you prepare for Monday's PET.
I hope the Boswellia can bring some relief to all of you. I have an appointment with my MO today. It's just more a check-in than anything but we will be scheduling my next PET for late August or September. I know it's not a "big" appointment, but doctor days are so very stressful.
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Hi, Ann, of all the pain this disease brings, the hardest for me is the need to tell friends and family about my stopping treatment. In the last week, I've e-mailed my sisters, and told 2 close friends. One of those close friends knows she has my encouragement to tell other friends, which makes it easier on me. At first, I felt under self-imposed pressure to get the word out and be done with it, but that is overwhelming for me. So I'll take my time and do it as opportunities present themselves. Regardless of how I feel about their "needing" to know, it's my right to inform them when the time is right for me.
xoxoxoxoxoxo
Calico
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dear calicocat,
I am fairly new to this thread so forgive me if I am asking a question that you already talked about or don't want to and pleasepardon my naïveté. but I thought you just completed WBR? I respect your decision to stop treatment, but is it just unbearable to do treatment and WBR. I may be in this position soon and wanted to prepare. I keep going back and forth with accepting that the end is near for me and the hope that I can be stable. Some days I have hope because I feel great, but other days I tell myself that this is cancer's trick and it will suck the life out of me with a forceful and sudden hand. I'm feeling sad. I have another PET scan today to prepare for the trial I'm supposed to start next week. I am trying to avoid WBR for as long as I can. But if I am left with only that option, I wonder if I should take it or just leave my brain be. I keep seeing my 4 year old looking for me. That vision frightens me.
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letranger - sending big hugs. Get more info and see what makes sense to you.
There are lots of reasons that all bats are off for us HER2 gals. Yeah, we will get knocked in the undertow quite a bit but there are odds we can beat.
I almost died in my sleep last week. I'm already beating the odds. So are you.
Much love today,
Ann
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I'm sorry, letranger, I didn't mean to leave the impression that it was the WBR that made me stop treatment. I posted on the "Death and Dying" thread, and when I do that, I inappropriately think I've shared my situation on every thread, when that is definitely not the case.
I had my last WBR (#10 of 10) on July 10th. Since then, I have profound fatigue and, if I'm not engaged in something, just fall asleep. There is very little I can do having this fatigue, so I doze off a lot.
My next chemo treatment was on July 21st. The treatment was carboplatin and gemzar. My bloodwork looked good enough then that I could have it.
Then I went for another treatment on July 27th and saw my onc, who had been out of town. He did a physical exam and reviewed my latest bloodwork. The news was not good. My liver, which has had the most tenacious cancer, was enlarged, and explained the pain I am having in my lower right abdomen. My liver enzymes were greatly elevated, and my red and white blood cell counts were very low. The onc and I had been discussing whether or not I should stop treatment since December, and he asked me if I wanted to move forward with more aggressive treatments (to me, that's code for worse side effects). I told him I didn't look for pots of gold at the ends of rainbows because I didn't believe in them. The onc did not try to dissuade me from that. He started me on neupogen shots to try and get my white cell count back up, and didn't have me proceed with chemo that day. I'll see him again in a week.
You can tell by my treatment history at the end of my posts that I've tried a lot of treatments. Nothing seems to phase the cancer in my liver, and it is progressing. As hard as it is, I can't rationalize continuing treatment. It's not working.
So that's the whole story for me, which applies only to me.
xoxoxoxoxoxoo
Calico
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Oh dearest calicocat,
I just feel terrible that you felt you had to expend that energy to write that post. I understand now. I'm still trying to find my way through the many threads in this discussion board but I apologize for asking you. I'm so sorry to hear your news but I do hope the side effects and fatigue get better so you can enjoy your family and friends and whatever you may want to do. And thank you so much for responding to my post. Sending love.
Btw: even with All that you've been through, you have amazing clarity in your writing. I love to read it!
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thanks ann for the hope. I needed it. I am waiting for my PET scan. I'll write more later to keep you posted on the trial. Found out the reason why I can't find anyone on the trial is because there are very few people on it! In fact, I'm the first person in my area to sign up for it! Onc said there were about 30 people on it at Dana Farber.
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calico - I agree with your reasoning. Taking treatment the distance and hurting ourselves isn't the way we want to go either.
Are you in palliative care now? It is something I want as I move though these next phases of treatment, to ensure my person also is a consideration in all this.
Sending love and prayers and comfort your way.
Ann
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I don't know too much about metformin, but it is mainly used for diabetics to prevent sugar spikes. I think the connection to cancer is the drug can help control the sugar rises in the blood and that is what cancer loves and feeds on. But here is what I found whilst searching as it relates to Her2+:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4196136/
I had a high k-67 value and it seems to reduce the k-67 level for HEr2+. It's a complex study, but when I mentioned that I was considering taking it to my new clinical team, he said he knew there were studies being done with it with positive results. So I'm waiting on them to let me know if I can take it while I'm on the clinical trial.
I even found some people who said they were on trials with the combination of Xeloda and Metformin. (And I'll be on Xeloda).
The other supplement I am interested in is merivia which is a bioavailable curcumin extract. It is better absorbed into the body compared to tumeric. I still grate fresh tumeric, but I think I will try this. The other interesting finding about tumeric is that it has anti-cancer properties, but most likely you need to take it with other ingredients to help increase its potency, like with black pepper, and add a fat like an oil or coconut oil (to make it more bioavailable). So I'm drinking my tea in the morning and adding a pinch of black pepper and having it with a piece of toast with coconut oil instead of butter.
Who knows if it will help the lesions in my brain. But I've got to try. Something has got to cross my BBB and dissolve those buggers!!!
BTW: the good news is my CT scan was clean today! I know because of this, they are going to hit me hard with the drugs next week. Well, bring it on! Gloves are on!
Good night all! Hope the "dream catcher" catches those bad dreams in its web and leaves the pleasant ones to pass through.
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Letranger, not to worry, I'm glad you asked. That's why we're all here. Answering your post helped me to put form into the unreality of where I am on this trail. It's really exciting that you are getting involved in trials and taking innovative approaches. You'll blaze the trail for others.
Seeing you whole and healed and at peace.
xoxooooxoxoox
Calico
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hi curcumin is what you need crosses the blood brain barrier I have longvida curcumin not cheap from Amazon xxx
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I had a weird thought last night: what if by being here I have already beaten the odds? What if my HER2 disease has been growing in me some 4-5 years and 2015 is actually just an extension to the existing disruption.
I'm taking time to write down passwords, create a will and all that while things are good because who knows what is to come. We are also looking into getting married, though we have been together since 1996 we never had and it should help smooth over some gaps should I pass.
I wonder what that PET will find on Monday.
I wrote to Dr Melisko in San Francisco yesterday, she specializes in HER2 brain mets. I wonder if she has anything to offer. This recent article mentions that a fairly high percentage of HER2 patients will develop brain mets -- something that was never discussed with us, nor monitored for. I think back on all my intensive conversations with my MO and he said we could beat this but now I see that he was just giving me standard of care.
Today my staples come out for which I am glad. This afternoon we drive up to our weekend place to see my partner and kids. I haven't talked to my partner about what the scan showed but I think he knows already.
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Here's the article link I mentioned above:
"Michelle E. Melisko, MD, of the University of California San Francisco Helen Diller Family Comprehensive Cancer Center, discussed management of brain metastases. Overexpression or amplification of HER2 is associated with a high risk of brain metastasis, with several trials showing the incidence rate ranging from 31%-43%. Although many patients with HER2-positive disease develop brain metastases, "their survival is actually favorable compared to other patients with other tumor types,"
https://am.asco.org/questions-remain-about-optimal-treatment-her2-positive-breast-cancer
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I wrote to my breast surgeon, a friend, to tell her what was missed along the way. Hopefully she will be able to use the information to help foster better decision-making.
I'be been so jacked with steroids and what not that I sleep just two hours at a time. I'm resting in bed now, the reality of having had recent brain surgery is hard to take but then I'm still greatful to not be in so much pain any more
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