Brain Mets Sisters
Comments
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delirium pie!
That's just Bananas! I am sorry that happened to you! Feel better soon and remember we all have to keep getting back up no matter how big the burden of a MESS OF A HORRIBLE DISEASE THIS THING IS! When we fall even literally...we get back up and move forward for as long as we can for as far as we can....just keep moving...
Xoxo
((Hugs))
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Carolben,
You are a strong woman. I am feeling like I'm right behind you...I'm loaded wih the disease. Brain liver lungs bones lymphnodes pericardial fluid pulmonary embolisims and fluid around my lungs. Been in surgeries draining the cancerous fluid just recently and spent 7 days in hospital away from my kids..so yes I understand and you sharing your story makes me want to be here for you if I can in anyway...I feel like you should absolutely live out the time you have the most comfortable way you can...but please make sure all the bases were covered..there may be something else?I'm sure hearing the words about time frame and palliative care were just beyond difficult..you are a strong woman and I am happy you are with your sisters where you feel best...hope the nurse you met fits in and you are comfortable today.
Keep your beautiful head up and message me privately if you ever want to ok?
((Hugs))
Dana Marie
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I fell several more times over the weekend and made a trip to er for headaches. They said I had a bit more swelling than before but sent me home. I'm just tired if hurting. I also hate having to make the decisions. Why can't they just fix me anymore? MO brought up hospice. I didn't think I was there yet. Only been doing this part of the dance since end of August. But now I just hurt all the time and have become a burden. I wish I had the right answers.
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This might not be a good place to bring this up but since it does help in regard to the brain, I will. I just begun using Rick Simpson cannabis oil. It does help a lot with the pain and helps you sleep well. I have read testimonies from people who used it to rid them of brain tumors. Not sure, but it is good to try anything if it will help live a better quality life.
I had a brain MRI yesterday as I have had more off balance problems...although no one can tell but me. I do feel pressure mid head. I hope it is nothing more than skull mets, although I have already had 4 brain mets zapped. The cannabis oil helped relieve pressure, and pain. Just takes a bit to adjust to the oil.
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Carolben,
I was told that the effects of WBR would take months and that's what happened. My first brain MRI showed no change but six months out there were dramatic changes. I hope they are just as wrong about how much longer you have to live. There was a woman in my MBC group who went into hospice and her Mom wrote to us saying she only had weeks. Miraculously, she is now out of hospice and doing fine. Glad you will be with your sisters. Please keep us up on how you are doing.
Love your head tattoo!
Hugs, Susan
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Living 12 years with Mets to brain
http://mbcn.org/get-involved/details/terlisas-story-getting-a-third-chance
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Living 12 years with Mets to brain
http://mbcn.org/get-involved/details/terlisas-story-getting-a-third-chance
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Wow. This is an amazing story! Thanks Monax5!
I also had never heard of MBCN. Donated some money to them. They sound great! Are you involved with them?
Hugs, Susan
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hindsfeet,
How can you get this oil? And how is it used/ingested? I feel clueless but optimistic about it. I've heard of canabis oil before helping in miracle ways...I HAVE to try. Just to cover my bases. Thanks for sharing. I too have widespread stage IV.
I will google now.
Thanks
Dana Marie
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delirium pie,
I'm sorry about all the pain and trouble you are going through. Have you tried steroids? Does the dr have you on a dose? They are so helpful wih the swelling and nausea and headaches..I'm on 8mg a day during my whole brain radiation...start to taper on Sunday. Finished my last brain rad on tues!
Be strong my friend and ask about steroids for the headaches and pain. Don't think of yourself a burden! Push that thought right away! You are a gift. And how about a great pain management dr visit and hospice can wait!!!!!
Dana Marie
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I went to a lecture by Donald Abrams (http://profiles.ucsf.edu/donald.abrams), an expert and big proponent of medicinal marijuana. He said that marijuana can be great as a sleep aid or to enhance your appetite. He made two points which really stood out to me. The first was that, even if you have lung mets, it's better to smoke than use oils, extracts or other methods of oral ingestion. He said that the way the many chemical compounds in marijuana interact is not well understood so extracting it can reduce the benefit. He also said that there is always a danger of ingesting too much since it take a long time for the effect to be felt. Inhaling, on the other hands, takes just seconds, so you will know when you've had enough.
Secondly, he said that it is NOT a cure for cancer. He wishes it were and he said that if there was any evidence pointing in that direction, researchers would be all over it. I believe Rick Simpson has several lawsuits against him for claiming his oil can cure cancer.
Just one person's opinion but he is a real expert in this field.
Hugs, Susan
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Delirium Pie, Your Avatar Cracked me UP!!!! So True!! I am going to use that on someone I know! thanks for making me laugh!!!!!0 -
Susan SF I agree. I was on RSO for 7 months.. with much progression. I stopped taking It last weekend and actually feel better. The oil burned going down and no telling when the THC would hit my brain and make me feel out of it, couldn't drive.
Not the magic bullet I was looking for.
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Dana Marie; What a comfort you are0 -
What are treatment options for Brain mets besides WBR? do we have to loose our hair with all treatments for that.?0 -
thank you so very much for this post! It is very uplifting and you are right. No one knows and no one can tell you when your time is up. I was DX with brain mets in Nov. Stage 4 with mets to liver in 2011. I work full time and have two little kids. It's hard but as long as I stay off the internet I am good! Thanks again! I needed to read that after the previous posts I had been reading
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I do not know if the Rick Simpson oil will work. I am grateful for the munchies it gives as I was losing too much weight. I do know of people to whom it did reverse their cancer or control it. I am throwing everything at the cancer, except for chemo as it does not pass the BBB for the brain.Right now, I'm having right on the top of my head brain pressure...not sure why? It feels swollen. I feel like someone is pushing down on my head...like a tightness or ? The MRI came out clear. I also know that only the Gamma Knife MRI shows micro mets that you can't see on a regular MRI. Just trying to figure why I am still off balance, dizzy and head pressure. Being on steroid helped.
The pressure could be due to the blood clot found in the juggler vein due to port placement that had to be removed. Anyone else have this problem and if so how did you resolve it. Thanks.
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Thanks, Brenda, but I'm seriously not wanting to do any more chemo - the last one (Cisplatin/Gemzar) nearly killed me!! I may change my mind, nothing is cast in stone, but right now I don't think so.
Been having this pain in left chest, so right now I'm working with the Hospice nurses on pain relief. It starts after I get out of bed in the morning, so I take meds half an hour before I get up, then I can shower and then the pain starts - strange. My headaches are better after the wbc - tho my head still feels "fuzzy", I still loose my balance, all the same stuff but less. Dont know what this chest pain is - have tumors in my lungs so it may be that, or muscular (doubt that) or new mets in my ribs, who knows...
I so identify with the fear around brain mets, but you, in particular have given me more hope there, Susan, thank you. It is so scary. And also I wonder what the cancer is doing all around my body without any treatment. But I'm not laid up in bed in agony and get to see my nieces and their kids, also I still have friends up here in Jhb. It was hard to leave my home in Plett, I was there for 18 years, but I feel much safer and secure here with my sister. Also I have less stuff to be responsible for - which makes my life easier. I'm starting to settle in with my sister and I'm seeing a whole other side of her. We had a good talk yesterday about her feelings, which was nice that she was prepared to open up and show me her soft under belly, she is the strong and organised one in our family!
Anyway I need to see if I can get my wicked step mother to fetch me to take me to see my father, who is 93 and is still mentally pretty good, even though his body is pretty much done - almost blind, deaf, can't walk, can't taste etc, makes me feel so lucky in a strange way.
Hope everyone has a good Sunday, the sun is shining here, and I'm going to try and get into a warm pool for a swim!!!
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Hi, All - I am new here - waiting for a path report today on lesions that were emergency removed from my brain two weeks ago. A little scared.
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Got the results - they're mets. I am officially Stage IV.
Hi, All. (*crying*)
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windlass.... I am so sorry for your diagnoses. I know there are some good treatments out there. I love your picture on your avatar-- it's beautiful. Just like you.
Hugs and try to be positive. 0 -
Hi, MyMomsKeeper - thanks for the welcome. I am amazed to see you seven years out from your Stage IV diagnosis. Wow - That's encouraging.
I am reeling, but working hard to realize this is a change of mindset, not a change of immediacy, if that makes sense. I am walking more strongly than I have in months and feeling better than I did just two weeks ago with those tumors in my head.
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Hi windlass,
I was diagnosed stage iv last February with brian mets found last December. When I was told of the brain mets I remember thinking it was the end. However brain radiation is a very effective treatment and I had 10 whole brain radiation treatments in December. There are side effects you will want to discuss with your doctor. My followup MRI on Feb 1st shows all sites have either shrunk or stayed stable. My side effects (mostly brain fog, short-term memory, concentration and fatigue) are improving everyday. I am told and have heard through this board that the radiation can continue to shrink the tumours for months. Talk with your doctor about all your concerns.
Sending you calmness and strength and a big HUG.
Kelly
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hi windlass,
I'm sorry for the news you received. I wish you continued strength and recovery. I just finished 10 WBR treatments..I have (hopefully HAD) 6 tumors all different places in my brain. So drs radiated them. It was difficult to get through. Steroids helped but also are a hindrance. Tappering off then now..if I can be of any help answering any questions or just need someone to email with, feel free to send me a message or posting here. We all are here for you. Kelly helped me so much when I first joined the brain mets sisters.
Sending hugs
Dana
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Carolben,
I hope that swim was magnificent!!!!!
Xoxoxo
Dana
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Thanks for all the support and the warm welcome. I am scheduled for targeted radiation on the "tumor beds" starting Monday the 23rd - five sequential daily treatments. They made a brainlab head mask thing for me yesterday - who knew what an interesting process that would be! Did you guys all get those gooey plastic strips laid across your faces? I pretended I was in Lausanne, Switzerland, paying thousands for a beauty mask being lovingly crafted by Swiss beauticians. Ha ha
Fortunately, my surgeon got all of both tumors, and I have no cancer elsewhere according to CT and PET scans. But it's HER2+, which likes the brain. Praying it does not come back - or that it many years go by before it does.
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Hi Dana,
How are you doing? I finished WBR in December. I heard that it continues to " melt away" the tumors for months after. One of my lesions is in cerebellum so my walk and balance were off. Getting better just slowly. Did your doctor start you on any oral chemo? I am on Kadcyla for liver mets which have been clear since 5/13. Tried Tykerb but rash was too bad. Suppose to start Xeloda. Any advice you have is appreciated : )
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@Priscilla0929: I am Stage IV left breast/bone since 2009. Lumpectomy September 2009 left breast. Breast cancer returned 2012 and mets to right cerebellum. Aug 2013 right cerebellum craniomity. 2014 cerebellum tumor recur. Did Tykerb, Arimidex, Tamoxifen, but in my opinion it was not working, thus the recur brain (cerebellum). Had 2 cyberknife radiations May 2011 and May 2013. Started clinical trial for Neratinib, Xeloda and Lomotil since 10/28/2014 . . . .totally sucks, well the diarrhea side of things, thus the Lomotil.
6 Neratinib daily
3 Xeloda 2 x/day (12 hr interval between morning and evening doses)
3 Lomotil (can take up to 8 pills/daily= max
14 days ON (take all pills)
7 days OFF Xeloda (but still take Neratinib and Lomotil)
IHospital pharmacy dept s
upplies Neratinib. Curascript provides Xeloda and have a company PANF pay for the entire copay of $90. . .nothing out of my own pocket.
Its a clinical trial by PUMA. Have to keep a diary. Have not worn my own undergarments since the start in fear of having a vicious diarrheal accident.
My brain tumor has grown Dec 2014, but clinician and PUMA, as well as brain surgeon suggested that I stay in/on the trial. Just millimeter growth 1 or 2 mm.
Be encouraged - - keep fighting - - stay strong
OH: I was reimbursed by CoPay Relief Program in Hampton Virginia for my Tykerb $25 that I had to pay. I also had another copay assistance paying to keep my out of pocket expense to $25/month. The reimbursed monies I used to pay for the next batch upon re-ordering.
I was also reimbursed for Tamoxifen and Arimidex, as well as anti-nausea medications too.
(((( tender hugs ))))
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I had surgery and stereotactic rads for a brain met 2 and a half years ago and have been fine since, until lately...I have been having vision issues and lately have had dizziness that is almost making me sick..I'm not a complainer but should I call my doc? I see him for my 3 mon visit in about 2 weeks. I haven't had a brain scan for about a year because I was doing so well. Could this be mets coming back? Thanks Mk
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Mrygolds13 : I can only speak from my own experience. I have brain met since 2012. I have had 2 cyberknife radiations (2011 and 2013) and had a craniomity (right cerebellum) August 2014. Brain tumor recurred 2014. Original diagnosis date Jan 2009 Stage IV Left Breast/Bone. 2012 Left breast recur with mets to right brain cerebellum.
Was on Tykerb, Arimidex, Tamoxifen. Now in a clinical trial with oral chemo called Neratinib, Xeloda and Lomotil (anti-diarrhea) since Oct 2014.
I fainted when my cancer moved to my brain (overheated). Called my oncologist who ordered Brain MRI - came back positive.
No longer on Tykerb, Arimidex, Tamoxifen.
Keep fighting. Its not a death sentence anymore, technology has really come front and center. We all are LIVING with breast cancer each/every day of our lives.
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