Brain Mets Sisters
Comments
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Dana_27 Please DO NOT donate to LOCKS OF LOVE. They make cancer patients pay for their wigs. I just got my hair cut and donated 6 inches to CHILDREN WITH HAIR LOSS by Great Clips. My cut was $7 because of my hair donation.
A friend who is a radiologist specialist with no cancer, grows her hair for donations and she found out about LOCKS OF LOVE and has been telling everyone not to donate. If you make a hair donation . . . . DONATE TO PANTENE.
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lonnie713 my brain (cerebellum) tumor was found after I reported fainting in my home after becoming very overheated. I called my Oncologist said they were looking for a sign from me - - and this may be it - - ordered me a brain MRI - - took the MRI brain -- - came back positive. That was in 2012 when my left breast cancer came back to the same area and same breast and moved to my right cerebellum.
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Hi, Priscilla - I was on the kadcyla trial when it was being tested for Stage III. It kept my liver, bones, and lungs clear to this day, four years later, so you're on an amazing drug. So sorry to hear about your balance issues. I struggled with the same thing, and was prescribed a walker and a cane, which I never filled the prescription for. Is your balance improving with the rads you've had? After my brain surgery I am NED now, and start rads Monday. Did you lose a lot of hair? Did your scalp burn? Any advice going in?
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Hi Windlass - yes I lost my hair. Started coming out in clumps so I just shaved it. My scalp didn't burn but I have been super tired. It was weird- during the treatments (10 WBR) and even a few weeks after always around 4pm I got super tired and nausea. But it's getting better each day. Just hive yourself home to rest and listen to your body. I am still working full time so some nights I come home snd go right to sleep. Take care of yourself.
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windlass, I lost all my hair with WBR. My surgeon wouldn't let me shave my head after rads (skin too delicate) so I wished I had done it first to avoid that slow falling out
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I'm posting for my best friend as we are dealing with a recent discovery of a brain met. She's just had surgery and isn't able to be online for long periods of time as it hurts her eyes and head. Here's the back story...
Dx in April 2014 - IDC in left breast
Her neurosurgeon and oncologist are consulting. We see the oncologist this coming Friday and the neurosurgeon the following Monday. I have no idea what we are looking at as far as treatment, prognosis, etc. Can someone please share what we could be expecting? I've been trying to research but just get overwhelmed because no case seems to be similar to what we are going thru with her DX. I, and she, so appreciate any hope/help you can give.
During scanning work-up, PET and Bone scans were clear but what was later DX as a cavernoma showed up on Brain MRI. 2 neurosurgeons and 2 oncologists agreed it was a cavernoma (basically an aneurysm on a vein instead of an artery and therefore not catastrophic if it bleeds) Neuros decided to just watch it for changes and continue treating the breast cancer
May 2014 - left mastectomy, lymph nodes clear
June 2014 - Onctontype (I know I spelled that wrong) - score 18. Her oncologist said he didn't feel chemo was indicated. We asked for second opinion at a larger, urban hospital. Second opinion agreed with our oncologist.
June - August 2014 - due to cavernoma and potential for a brain bleed, oncologist wanted several opinions about treating her with tamoxifen. All doctors we saw agreed that tamoxifen was safe for her to take
September 2014 - began tamoxifen (cancer was Stage 1a, ER+, PR+, HER2-)
November 2014 - follow-up appt with neurosurgeon for cavernoma. Repeat MRI. No changes. Everyone decides to just leave it be, unless she becomes symptomatic.
January 2015 - 3 month appt with oncologist. Blood work looks great. No changes. See you back in 3 months for 1 year anniversary of diagnosis.
Feb 13, 2015 - she has a seizure at work and is life flighted to her neurosurgeon's hospital. Neurosurgeon says the cavernoma bled. He wants to remove it. (It's located on the right temporal lobe and can be "easily" removed). She agrees.
Feb 16, 2015 - Surgery is done. Neurosurgeon discovers it is not a cavernoma but a breast cancer met. He was able to remove it all (2.8mm in size) plus get clear margins.
Feb 19, 2015 - Prelim Path Report shows the brain met to be identical to the original breast cancer (ER+, PR+, HER2-).0 -
Hi,Has anyone had their hair regrow after radiation treatment for brain mets?
What type was the treatment and how many treatments were done?
Thanks for your help
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I had WBR - 5 treatments -last July. My hair has grown back - about 1 inch all over now so it's been quite slow. It's the second time I've lost my hair, grew back a little more quickly first time round. That time was caused by chemo
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an update. Whilst brain mets seem under control, I had a bone met diagnosed in December and today the oncologist told me it looks like it has spread to lymph nodes in my chest. Biopsy next week. Feeling gloomy.
And the government wants to take away my driving licence for 2 years.
Still, I am starting Keytruda next week. Hoping for miracles.
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I am off to have my brain tumor taken out. Blessings to all of you. I will catch up once I am feeling better and have access to electronics, which I am told will be at least 2 days.
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we are anxiously awaiting to hear how you are leftfootforward! And Bosco19, please let us also know how you are!!! Hang in there!
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Started Keytruda on Monday then biopsy Tuesday confirmed one cancerous chest node of three sampled so now off the Xeloda and Wednesday had first dose of Gemzar/Cisplatin combo, along with Avastin. Zometa to follow next week with second dose Gemzar. Heavy going but not surprising i suppose with general anaesthetic only on Tuesday. Rather stupidly went to work today as I had a series of long planned meetings so looking forward to nothing but sleep tomorrow! Finally, brain MRI next Tuesday.
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back home and doing ok. The staples are the bomb. Preliminary report is that is was abnormal scar tissure so a big win for me. Waiting on the final report. Thanks for the thoughts.
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leftfootforward,
Great news!!! Thinking about you and praying for a speedy recovery!
(Hugs)
Dana
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Leftfoot: Wonderful, wonderful news!
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Anyone experience nausea weeks out of WBR? My last treatment was Dec9th. Not sure why but I have been really nauseated. No vomitting, headaches, or vision changes. Anyone experience similiar?
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ok for the first time ever I am very frustrated. These after surgery meds they have me on have put me in a fog. I hate being I a fog. Can't process anything. I hate this. I can deal with SE from chemo but this brain surgery anti seizure med fog is the worst
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Just checking in with everyone. I think about all of you every day. I hope you are busy with spring time activities. I am trying to play catch up. I know you all know that that feels like. Best wishes.
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Have you, guys, heard anything on the effect of grapefruit on WBR? I had WBR today, didn't feel too good until I ate a grapefruit, which substantially improved the way I felt. So now I wonder whether it just counters the SE of WBR or might be offsetting the effect of the radiation altogether, including the effect on the cancer.Of course it could be unrelated to the grapefruit and just the WBR working.
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Mary_123,
I know you aren't supposed to eat grapefruit if you are on Tamoxifen or Ibrance (Palbo). I was just reading the Ibrance site and it said that eating grapefruit may INCREASE the amount of Ibrance in your body. Seems strange. Wonder what the mechanism for this effect is. I had figured you weren't supposed to eat it because it would counteract the dosage of Ibrance, not enhance it. You should ask your RO. Maybe you're onto something good! I had so much trouble eating anything while doing WBR. Didn't feel nauseated or anything its just that everything had no taste. I think our bodies tell us when we need to eat something because of an imbalance. If the grapefruit made you feel better, there's probably something in it that your body needs.
Cheers, Susan
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Just diagnosed with brain mets. Scared. Husband and I went to breakfast one morning about 4 weeks ago. On the way home I was trying to talk to him and words would not come out right. They were jumbled and mispronounced. But I knew what I was trying to say. Husband took me to ER. Initially they thought it was stroke. After ct and MRI they found 4 tumors in my brain. I completed stereotactic radiation last week. Now I'm weaning off steroids. I've been in such shock I haven't even asked doc what this means as far as prognosis. Is this a death sentence.
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Warm hugs to you at this uncertain time KasSha. I was just diagnosed with five brain mets last week and start radiation individually not whole brain next Wednesday, I am sure people will be here to answer ypur questions and concerns with educated and experienced answers soon. I just want you to know you are not alone! I have had no symptons and was initially told it was one, after an MRI they found four more. I am going on a trail to have my progress monitored every eight weeks. The radiologist told me I have a 50/50 chance of them coming back.
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Hi KasSha,
iI was diagnosed with brain mets in December. It is scary but radiation seems to be very effective. i had 10 whole brain radiation treatments in December and my tumours are either gone or have shrunk by 50%. If you click on my screen name keldel at the top of this post you can read my posts from that too.
Ask your medical team lots of questions about what to expect in terms of treatment side effects so you can put in place any extra help needed at home. here is a link to a good story of a woman with brain mets since 2003
http://mbcn.org/get-involved/details/terlisas-stor...
For me, the more info I have, the more I feel in control Sending you a big hug and Good luck!
Hi smiley47,
I wish you sucess this week with treatments. Keep us updated when you can!
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Smiley, hugs to you, too, I didn't have WBR either. Just had the 4 tumors zapped. Dealing with coming off the steroids now. I definitely have the moon face! My radiologist hasn't said anything about prognosis but I didn't ask because my children and elderly parents have been at all my appointments. Ive been released to drive now so I'm going by myself Wednesday and I'll ask the hard questions then.
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keldel, thanks for your post and giving me some hope!
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Thanks Keldel for the thoughts and the inspiational story. My daughters were born the same year her struggles began, i feel scared for myself and my children but at least I was spared the cancer struggle when I was pregnant and my children were young. Looking back I think my cancer journey began after my last child was born; I felt different and gradually got more tired and worn out with the life I was leading. I have spent a lot of time this week thinking about what I should do for my family if as my doctor says I could become within a month mentally or physically handicapped, stories like this give me peace at bedtime when the fear is worst.
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Thanks for letting me know about the moon face KasSha, might be interesting in the mirror too add to the weird curly grey/white hair I have and half eyebrows that have grown in since stopping taxol. What a freak I look but it is what it is!
My radiologist said I could still drive, I hope he does'nt change his mind
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Someone mentioned that if the disease is found in the spinal fluid the decline is fast and furious. Well so far that isn't the case but it makes me wonder of I should have gone with war rather than the rss that i just had. should i go back and get wbr?
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KasSha,
So sorry about your diagnosis but having brain mets is definitely not a death sentence. As keidel said, radiation is very effective. I had over a dozen tumors in my brain and the last time I was scanned only the biggest one was still visible (originally 2.2cm) and it had shrunk by a lot and they assume it is dead, just necrotic tissue. Looking at your list of treatments, looks like you have been fighting this thing for a long time. Hearing about brain mets after all of those treatments must be very hard. I hope you will have a good response from the radiation treatments. They can take awhile to start working so don't worry if your first post-rad scans don't look better. Mine didn't start improving until about 6 months after treatment.
Hugs, Susan
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smiley47- I can relate to that feeling. I'm still not feeling very well and there is so much I want to be doing for my family. I asked about prognosis this week. She said because I have 4 tumors and they are in places that are inoperable among other factors I have I'm looking at one to two years. That's just a statistical average. I've usually done better than average so I hope this will be no different!! Of course, when they might start affecting my quality of life is not predictable. My moon face is getting better but not fast enough!
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