Brain Mets Sisters
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leftfood,
Hope your scans came clear....praying you can continue with the treatment .
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Hello, I'm having an MRI tomorrow for possible brain mets due to headaches. Been reading through this thread and have a question.
What is the difference between brain mets. brain lessions, and brain tumors? Thank you very much
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Snooky, I think both terms are essentially the same, although lesions maybe smaller spots or less formed than actual tumors.
Anyone else know the answer?
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thanks everyone.
My scans were ok. Hard to tell if they are better or worse than previous ones.
MO and MO decided to change my treatment yo Nerlynx. Not excited about potential SE but hopeful it will do the job.
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leftfoot, best of luck on your new treatment. Much love to you.
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I am new to this particular thread as things have been going quite well for me for the past 2 years on Ibrance. However, I’ve been having a headache and tingling feeling in my head for the last week. Of course, I am thinking the worst and most possibly brain Mets. My others spots are in the pleural lining, liver and bone, which all had improved to only tiny lesions over the past year. Now I am thinking....brain!
Wondering what your experiences have been in terms of treatments an effectiveness.
Thanks!
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thereishope4us, I’ve found treatment of my brain mets fairy easy and quite effective. The key so far has been targeted radiation while the spots are small, in my case, they’ve been few and less than 1cm in size.
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hank you illimae. We are about the same age. So glad you are doing well.
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I am also doing well. My path is slightly different. I had WBR in 2016 and spot treatment in 2018. I am NED from neck down and brain lesions are still shrinking. My QOL is good and my body is strong.
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It's been three months since my wife's WBR and she's still extremely exhausted. I mean she barely makes it out of the bathroom to stumble back into bed. She eats okay and can get around using her walker but it's the extreme exhaustion that is still with her. Before her WBR she had brain surgery to remove part of her dura. My wife recently had an MRI and showed no cancer to her brain. She hasn't had but 6 infusions of Halaven chemo since February. A PET scan was recently done and showed some progression yet also showed a lessening of the cancer in other places (bone mets only).
The real question is is this normal, this total debilitating exhaustion for three months after her WBR?
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thereishope4us - there is hope. I had a solitary brain met removed with a craniotomy in 2015 and gammaknife radiation to the tumor bed after. I've been NED in both my brain and body since. Hang in there!!
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Thanks Goodie16! Glad to hear that there is still hope. I am still feeling the headaches and MO has ordered a scan of the head to go along with my CT in a few weeks. Part of me thinks that the headaches are caused by tightening of the muscles along the back and shoulder. Fingers crossed for good scan results.
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Hi, all. I'm posting for my sister again. Had a bleak appointment with the oncologoist on Thursday. Said all brain tumors are progressing, and two in the cerebellum are doing so more quickly. He indicated that their center had no further treatment options to offer her. We are looking at a couple of clinical trials. One at Dana Farber (HKI-272/Neratinib) for HER2 Positive BC and brain mets and one at UCFS (GDC-0084 with Herceptin). Do any of you have any experience with these trials or with these drugs?
Thank you!!
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DizzyDee- I am awaiting approval for Neratinib. Not the trial but just the drug. I continue to get small brain lesions despite my current treatments. I have heard that some people with Brian Mets respond wonderfully to this drug.
May you find something that works.
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Since my last post on Oct 3rd about my wife's extreme exhaustion nothing has changed. She had a meeting with her oncologist and, unless there is a sudden change to her condition, he will cease all chemotherapy. He wants her to enjoy what time she has left. Actually my wife, other than the exhaustion, is in good condition; her blood work is, according to a nurse, is that of a healthy person. Her heart and lungs are clear and strong. The latest PET scan showed bone metastasis only with some progression yet some lessening in other places.
My wife (TNBC) shows a high PDL-1 and there is a new FDA approved immunology Tecentriq to be taken with Abraxane (Taxol). Nice but she is very allergic to Taxol and almost died from it in the infusion room. I wish there was some treatment, pill or whatever that would get her out of this extreme exhaustive state. Just venting, it's lonely around the house as she sleeps all the time.
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Mike, just want to give you my virtual hug to you and your wife. You take such good care of her. Hopefully her exhaustion will lift some so she can spend some time with you. Vent all you need. We all need somewhere to vent here. We can all empathize with you and your wife. I looked after my mom before she died in Jan from lung cancer while dealing with my own symptons/SE so I can definitely sympathize as both a patient and caregiver.
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Heartbroken. I saw on another thread that Lita57 passed. She was such a wonderful woman who really supported all of us.
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Also, Zarovka has passed. A strong and kind woman who frequented this board.
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Lita will definitely be missed, very funny and vibrant even through all the hell she was going through. I deeply miss Zarovka's presence on this board. She inspired my physical activity along the way and was very encouraging. Took over Nancy's fitness thread and renamed it to Stage V fitness, moving beyond stage IV. That thread is also one of the most active ones and inspires many to physical activity that can help us deal with so many emotional and physical tolls we have on us. I miss both of these women among the many others we have lost too.
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was asked to step in for a local news segment for the ACS of Seattle. Outside my comfort zone but a good experience.,
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Leftfoot..,,,An amazing interview. I'm proud of you. I can't imagin the courage that it took to do that interview Good for you!!
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Mike Do the doctors give a reason for her exhaustion? Is she just tired of fighting? Or is she in a deep depression? I know about depression, it totally zaps all your strength and you care about nothing. If you have a slew of visitors come in, would she and sit with her, would she try and get up and talk with them? IMO she needs a reason to fight and she needs HOPE. if she is religious perhaps a priest. orminister could come in and read scriptures t0 her, the Bible, God's word is a powerful motivator. Could you communicate to her that she's deeply loved and needed by you could you get her to sit up for awhile and talk with her? Remind her of the beautiful life that you've had with her and that it can still be that way. She needs to know she's valued and her life matters.
Could you get a therapist to come in and talk with her>
Just some thoughts. You're in my prayers
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great interview LFF.
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Snooky1954. Thanks for the kind and inspiring words. She isn't depressed but just exhausted and wants to sleep all of the time. Her Oncologist attributes her exhaustion to the cancer. However, from what I've read it's more likely from the Whole Brain Radiation (WBR) she's had, not to mention the brain surgery. She's frail and not much interested in food so I have to play bad nurse Rachet to get her to eat.
She wants to fight and, I found out just yesterday they are going to have a meeting between some Pharmacy people and some of her Oncology staff. It seems my wife has a very high PDL-1 which would fit in perfectly with a new recently FDA approved Atezolizumab or Tecentriq. This new drug has few side effects, just perfect for my frail wife. However, it's best and most effective when taken with the recommended chemo paclitaxel. My wife is horribly allergic to taxol and almost died in the infusion room from it. So it's the old rock and a hard place. With Atezolizumab the higher the PDL-1 the more successfully it works. Yet there's the taxol. Her Kaiser Permanente Oncology is really going the extra mile for her. They are confident they can find an alternative to Taxol.
Recently she's doubled her potassium intake as she is always deficient in that. And, as a lady from this forum stated (I think she was from Argentina) recommended Vitamin B Complex which she's now taking. For the last two weeks I've had her on FenBen with Vitamine E. The FenBen won't help with the exhaustion but perhaps eventually help with the cancer.
Keep fighting Snooks
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LFF you are brilliant. Thank you for bringing this reality to the public’s attention. Wishing you many many tomorrows with your family.0
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mike... there was also something I saw recently about taking massive amounts of Vit C. I sure hope you find something to stop all your wife's fatigue so she and you can start living again. Best to you guys
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LFF: wow that's great....
Nice knowing you...very inspirational.
Mike: I very happy that your wife have a clear MRI... Just keep fighting, always amaze me how strong you guys are .
Maybe she can try only atezoluzimab alone to see if works?
I glad that the doctors are trying new ways to treat her, hope she can respond very well , keep us informed
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Liza,
You are so articulate and sincere. Loved, loved, loved what you said! Thanks for sharing.
Hugs, Susan
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Hi everyone
It's been a while since I checked in. The past couple of days have been rough. I was NED after my brain met was removed last year but my latest pet scan picked up a lesion next to my spinal cord. I think in the lining around my spinal cord. Also a possible spot in the lining of my brain. I feel terrified and like things are going to go downhill fast. I can't stop crying and googling. I start radiation tomorrow. I'm not ready for this
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Hugs. hang in there AllyBee. We are here for you
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