Brain Mets Sisters
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I'm 9 days out from my surgery and Im still so tired. Is this normal? I feel like my muscles are starting to atrophy even though I've been been walking about since they fixed my cerebellum.
Anyone else? I need input from other survivors
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Agnes's- do you have any PT sessions scheduled? They helped me get my strength and balance back in ways that weren't taxing. Also what Medd are you on? They also drastically effect how you feel. I felt so much better once I was off my anti seizure meds. I am sorry you are feeling this way and hope things get better soon.
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Agness, the exhaustion after brain surgery is very normal. For nearly a month after mine, all I did was eat and sleep. Even sitting up to visit with friends or family would wipe me out for hours. When I was just starting to get my strength back, it was time for GammaKnife and that left me exhausted for another few weeks. My surgery was in February and I would say it was late April before the exhaustion subsided. I felt great May - present and am now back to work full-time. You'll get there. Just give your body time to heal and take help wherever it is available.
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hi all, I am new to this thread. I just found out I have three lesions on my brain. I have a consult next Monday for SRS. Read some about it. Sounds promising. Wondering what to expect. The lesions were found on a CT so I go for a brain MRI on Thursday. Hoping for the best.
Hugs from Alice
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hi sassyalice09, sorry you're joining us here on this thread. How are you doing? I had 4 lesions in nov 2014. I had SRS and it was not too bad. They split the session into 2 days. after SRS, I had headaches, depression and fatigue but the SEswore off in about 8 weeks. I was on dex and I had a bad crash. But the lesions shrank for about 7 months. My April scans looked good, but my recent scan in July showed more lesions and old ones growing. So I'm off to the next treatment. SRS is supposed to be pretty effective and I hope it keeps your mets away forever! Best of luck!
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letranger,
We all remember those early days and how terrifying it was. I hope you can overcome your fear about WBR. I did 20 days and it really wasn't too bad. I lost a lot of weight and was fatigued but I was still able to do most things I normally did like go to dance and yoga classes every day. I was able to drive though I drove much more cautiously, mainly because of my eye tumor which distorted the vision in my right eye. Sold my manual shift Porsche and bought a soccer Mom car which, in retrospect, I didn't have to do. At least my son's soccer team mates are more comfortable in the back seats!
My RO wanted me to have WBR because she said there were probably a lot of small tumors we couldn't see in the scans. She said that WBR would clean everything out and then we could use gamma or cyber knife if anything came back. All but the largest two brain tumors are gone and it looks like the two remaining are tiny and dead. My memory isn't great but it wasn't good before WBR. I just make sure to write everything down, particularly appointments. My iPhone keeps me on track. Certainly I did not lose my personality or my higher level brain functions.
Might be a small consolation but you are lucky to only have brain mets. I'm in a support group of MBC women and every who has died since I joined died of liver or colon mets. Those of us with brain mets seems to be doing well. Herceptin seems to work very well though I can't take it since I'm HER2-.
We are here for you! Tu n'est pas un etranger!
Hugs, Susan
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Dropping by to give hugs to Alice. I'll be having stereotactic radiation to my cerebellum in a few weeks.
My lesion was singular so we are going to do focalized treatment and then monitor. Doing treatment with a mask spread out over 3-5 days is supposed to be more damaging to malignant cells and more protective of my healthy cells.
I still have a little unsteadiness but I don't want to take steroids anymore -- my god the armpit stink, jitteriness, lowered immunity, lack of sleep -- and breaking out on my neck and back after just 10 days. I tapered down last week and I'm taking Boswellia daily. I'm playing around with the dose until I feel good. I saw my PET scan from Monday and my brain still has a large area of disturbance where the surgery was. Evidently the lymphatic system is heavily involved in the cleansing of the cerebrospinal fluid and that during sleep is when the body cleans the fluid most. My chinese medicine doc gave me herbs to take at bedtime and my sleep has returned. My qi (energy) was really poor after surgery but acupuncture lifted me up and I'm coming back now, slowly. My kids are having a bit of a rough time with mommy not being 100% but I'm really feeling so fortunate about everything that has happened.My MO reviewed my PET and bone scan with me and there isn't anything there. This could be it but we are going to keep monitoring. She said the frequency of scanning will be collaborative and I'll have a lot to say about how often I want to get checked out. Sounds reasonable to me. She's up on her HER2 knowledge, my MO who she worked with just retired. I think I'm in good hands and we do have more tools in our arsenal. She said she has seen HER2 do this before but it can happen that it doesn't come back. Let's focus on that.
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hi agness, since you have one site of metastases, have you looked at the oligometastic thread?
Sounds like you and your team have a great plan for you. I had SRS in Dec 2014 and found it bearable. But I did get fatigue snd took decadron (hate that stuff) and I had a pretty bad crash as I weaned myself off of it. I wasn't even taking much - maybe 4mg a day. But my body probably needed more of a gradual weaning time.I'm following you on this thread, so keep us posted!
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hi everyone,
I was diagnosed in December 2014 with stage 4 mets to bones at the age of 29. I am ER+, PR+, and HER2+. Had 6 rounds of Taxotere, perjeta, and herceptin. MRIs in May showed clear for spine and brain mets. Had MRIs done again last week. My spine, CT scans, and bone scans are all stable but was told I have 7 tiny lesions on my brain. Biggest is 9mm. I was told the that Whole brain radiation is the standard of care but I have the option to choose it or a study at MD Anderson in Texas. If I choose the study I will be randomized to do WBR or Gamma Knife surgery. I'm pretty scared with it altogether but has anyone had experience with either of these.
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Hi sekots2004,
I am so sorry to hear that you have progression. I completely understand how scared you must feel! I get it. I was dx'd with brain mets in Nov 2014 and in Dec 2015 I had SRS. That kept everything stable and shrinking for about 7 months. My RO had told me that even though there were 4-5 lesions seen in Nov last year, there were probably more that just were not picked up by the scan. I still chose SRS. My latest MRIs show more brain lesions. I chose to hold off on WBRT and try a clinical trial with drugs instead (one drug is not FDA approved yet, but pretty close). I just started the trial on Monday and really hope it works.
Did your med team give you other options besides WBRT and gammaknife? With gammaknife, will they zap each of the 7 lesions? What is the benefit of the trial if you can get the same treatment with your current medical team? I'm her2+ as well and there are also drugs are specific to us. The other possibility is to do radiation with drugs. Have you considered that? Tykerb and Xeloda are options.
There are a lot of caring ladies here. I hope you find a treatment plan that is best for you. All my best to you.
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Right cerebellum 2012. Craniomity Aug 2013. Recur Feb 2014. Same location - no new growth. I'm Metastatic left breast cancer and bone Jan 2009. Left breast recur 2012. Left mastectomy. When the breast cancer recurred in 2012, it went to my cerebellum. Getting brain MRIs every two months. I'm on Herceptin, Zometa, Tykerb and Arimidex (anastrozole).
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@letranger: Was in clinical trial for Neratinib and Xeloda for my brain (right cerebellum) tumor. Nov 2014 to Mar 16, 2015. I had to come out the trial, my brain tumor grew. I had to have a "drying out" period (no chemo drugs in my system to get ready for cyberknife radiation. I think it was the end of April I had three (3) sessions of cyberknife on Mon - Wed and Fri. one hour each day, looking like Hannibal Lecter of sorts - lol. The tumor is being watched by two doctors and now get brain MRIs every two months. This right cerebellum tumor came in 2012 when my breast cancer returned to my left breast and moved into my cerebellum. In Aug 2013 it was removed via craniomity. February 2014 it recurred (no new area of growth - but to the exact location as before). This is where I am now.
I was Stage IV from the door in Jan 2009. After all these years, I just decided to get a port installed in my right chest to give my one arm (right) a break - scar tissue heaven. I celebrated my CANCERversary Jan 14, 2015. We are thrivers, LIVING with cancer!
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Jene1835, thanks for your post. Is your new drug combo helping? My onc said that if neratinib does not work, I could try Tykerb. I don't really understand that since I thought that Neratinib inhibits the tyrosine kinase activity of epidermal growth factor receptors, EGFR (or HER1), HER2 and HER4. And Tykerb is a dual inhibitor of Erbb 1 and 2 receptors (tyrosine kinase). I guess they are different tyrosine kinase receptors. Keep us posted on how you do and congrats on your CANCERversary. You're been through a lot in a very shot time. Best,
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Just remembered this today. There is some preliminary evidence that hyperbaric oxygen treatment concurrent (within an hour) of radiation treatment may help increase the toxic affects for malignant cells.
From what I read (I met someone with glioblastoma during proton therapy treatment for my breast cancer and researched more about it) this may be especially effective for brain mets.
Hyperbaric oxygen therapy and cancer--a review.
http://www.ncbi.nlm.nih.gov/m/pubmed/23054400/
Hyperbaric oxygen and radiotherapy.
http://www.ncbi.nlm.nih.gov/m/pubmed/15702300/?i=2&from=/23054400/relatedHyperbaric treatment can be tough on the ear drums.
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thank you, susaninsf, for sharing your experience with WBR. Everytime someone shares their success, I feel a boost of hope. I know WBR is most likely in my future, but I'm trying to postpone it as much as I can. I think it will really depress me. So for now, I'm hoping to control the mets with oral chemo.
Thank you again for reaching out. It means a lot
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Tykerb is supposed to pass the brain blood barrier better. Herceptin has not been my champion. Perjeta and Kadcyla worked well. I've had small progressions on both until this. WBR is done and I handled that well. Rads worked great on my spin. Hope it works just as well on my brain. I started Tykerb and Xeloda last Friday.
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fujimama,
Congrats on finishing WBR! Just remember that the rads take a while to work so don't be discouraged if your first post-rad scans show no change. I get quarterly scans and the improvements didn't show up until the second post-rad scans so that's around six months later. My eye tumor didn't go away until my last visit so it took over a year.
Hugs, Susan
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Susan, I just heard your good news. Awesome!!! So happy for you
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Susan that is good to know. Sometimes we need to hear and understand it from the patient perspective, and sometimes us patients know more than the docs about how it all works.
Letranger - when might you need rads or are they going that chemo is going to work?
I'm supposed to wait 4-6 weeks and I struggle with wanting to get it over sooner versus waiting until after Labor Day when I'll be better healed.
Sheesh what a lot of crap to deal with.
Hugs around.
Ann
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Hi, Ann, WBRT is the standard of care for my 11 lesions. I am choosing a clinical trial to see if that helps. According my my calculations, I am due for a miracle.
I am not ready for WBRT. I think I will lose who I am. I had SRS in Dec 2014 and I was very depressed. My QOL is important right now so I'm taking a chance with the oral meds. I don't really understand what my options are if I do WBRT and my lesions return. I won't be able to do it again so they will just give me meds anyways, right? I don't even want any more SRS because my RO said that pieces can break off and lodge in the brain! So what is the point! Arg. I'm so frustrated with this. But many people have had success with SRS and WBRT and so it does word for some. I just don't want anyone touching my brain for as long as I can hold out. I already have chemo brain and forgetfulness and I draw blanks when I try to remember a word or an event or what I ate yesterday. It;s very upsetting. On top of that, my head is so tender to touch and I don;t know if it is residual effects of chemo, neuropathy, or SRS or all of the above!! Oh, and everyday I worry about having a seizure. I don;t have any major symptoms from my lesions except for scalp sensitivity. So any day now, I think I'm going to be hospitalized and taken in for surgery or WBR. It scares me everyday and I have some pretty gruesome nightmares that accompany me to sleep.
I think I need a good cry.
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K-lo - I'm glad you feel you can vent here. I hear what you are saying and it makes sense to me as well.
Have you had genetic testing done? The other kind to match therapies?
Also, just curious, why do you and snyone else here think they developed cancer in the first place? Have you any clues?
Hugs
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Ann, after I had my son in 2011, I was depressed for a short time, then I got a new position at work and started winning many grants. I was working like a dog and trying to pump milk for my son at all hours of the night, writing proposals, and trying to mother my son who would not let me go and nor would he drink formula to give me some rest. It was extremely stressful. My problem is also i don't know how to say, "no thank you, I have enough on my plate."
I also tried to put my son in a home daycare and I have a suspicion she was drugging him to sleep. It's an awful accusation but it really was my gut feeling. I think about that all the time: the fear in his eyes when I would drop him off. So i pulled him out after 2 weeks and found an expensive school and was finally relieved. So these stresses from 2011-2013 most likely impacted my well-being and health in a negative way. And once again, I have lots of job opportunities knocking on my door and I am heartbroken that I have to say no. I love my career and now I have to work at a minimum if I can work at all. When I am at home, I feel like I am just wasting time. I want to be with my son but I am also struggling with teaching him to be independent without me.
I'm a mess today. Everything is making me emotional. And my mind just does not seem to be working logically. So, please pardon the poor writing and crazy-woman rant. I hope I answered your Q. I believe the stress of motherhood really caused an imbalance in my body. Unfortunately, I did not know how to manage the stress of new motherhood and balancing my career. But my son is worth everything I have gone through. I waited for him for 12 years. He is my world.
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letranger- I feel likeI could have written your post. My BC also developed while mothering two younge boys as an older mom, doing extended breastfeeding (everything says you CAN do it), and trying to work a stressful job. My younger son wasn't happy with a sitter at home and it just furthered the strain as I really did burn the candle at both ends. I didn't know I could break.
From my research I believe that chronic stress caused my adrenals to push out zinc and magnesium, and the desperately low zinc caused my copper levels to shoot up. You can read more about hyperaldosteronism if you area interested.
The low zinc caused years of digestive issues that I thought were food sensitivities but we're in fact caused by impact on my pancreas, an organ that relies on zinc to produce digestive enzymes, so my absorption was poor. Low magnesium caused mood swings with my kids, not all the time, but so much clearer now as to why I felt out of control mood-wise. I also had poor sleep from then tine of my first pregnancy, another symptom of low zinc and magnesium. I also had low ferritin, something I don't think they fully understand how it works, but zinc aids absorption in the gut and it is stored in the liver predominantly.
In Chinese Medicine having children is depleting of the Jing, or life force, particularly for older mothers. I have read that if you restore the blood you can restore the qi (energy) and regain some of the Jing. It makes sense to me. Can I overcome the deficiencies and disease at this point? No one knows and so I must find peace in just being and living each day as the gift it is since my tumor almost killed me
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Now for a practical question. I had my surgery 18 days ago and my skull near my right temple, under the hair,in one spot is sore and has a lump where they screwed something in. Is this normal to still be here? It doesn't appear to be infected but could something be festering? Any similar experiences?
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Agness: FYI Kathy aka (K-lo) passed away. Sorry.
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I wonder where I saw her post. I'm sorry to learn of her passing. Thank you for telling me.
Letranger -- is proton therapy not an option for multiple mets? It is more targeted than SRS.
My chinese medicine doc today told me to wait a little longer to do rads, it has to do with it being late summer. I guess after Labor Day it will be then.
Is there a difference between gamma knife, cyberknife and linear accelerator for SRS? They sound similar to me for what I need to be treated for -- cerebellar mets tumor bed -- it was pretty big but they tell me I shouldn't notice much difference compared to what I already felt.
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HI Everyone,
I was just recently diagnosed with Leptomeningeal disease ( mets from stage IV inflammatory breast cancer 2008). I was diagnosed about 1.5 months ago. It has been very difficult for me to accept this diagnosis and i have been very down since i find out. There is not a lot of hopeful things regarding LMD on the internet but i am so grateful for this thread and to see that some of you are doing so well.
I just had an Ommaya placed and started intrethecal Herceptin ( today was #2 dose) i will be receiving this treatment on a weekly basis for now. So far the only side effects i have had is nausea and headaches. Its tolerable and i hope it gets better as time goes on and the more treatments i have. I have beaten the odds with my IBC diagnosis and hope i can do it with this disease as well but i must admit I AM TERRIFIED!!
Any hopeful stories would be greatly appreciated!!
Thanks in advance,
Tiba
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Tina - sending hugs. Big stuff to deal with. Deep breaths because you are still here with us.
Over on the HER2support.org forum there is a great thread about IT Herceptin. It is helping some and evidently it is even healing to dissolve some solid tumors inside the meninges. Go take a look and you will find others in your situation.
Thinking of you.
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Hi Tiba,
We're so sorry to hear of your recent diagnosis, but really glad you found us! You'll found our Community and incredible source of advice, support, inspiration, and encouragement.
Please continue to post to keep us updated on how you're doing.
--The Mods
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Dear Leftfoot;
My heart goes out t o you. I had a brain surgery lest see 3.5 years ago in the same spot you're describing. I also had steroetactic brain rads instead fo WBR. Much better than WBR. I did not have gamma knife. However the surgery process is long, and yes a little scary. I did not have any real issue with my surgery, thank fully. No painful at all .Scary no I wanted the cancer out. I think you do fine. I lost the use of my right hand before the surgery duet ote h fact he y failed to diagnose my brain tumor after treatment stage 3. my hand went numb them limp. I am a right handed artist so this was a great loss. I lost my speech for while very blurred and wrong words would emerge from me. I still halve a all issues . For two years I needed home care daily. I still l need help around the house because i am a dedicated vegan juicer and use herbs s well to get better and stay well.
wishing you all the best and let us know how you are. Arrange to get help if you have children you may be disabled like I am now. Plan on it expect it a dn then be pleasantly surprised if you re not. just for you information I am hoping the very best! very highest good for you.
Marcia
PS please forgive typos I cannot use rigth arm or hand well xx
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