metastatic to brain from breast cancer(triple negative), pls advise. - 1256597

johnjan
Posts:2

My sister has been diagnosed of triple neg breast cancer stage II Oct last year. She went thru chemo therapy(combination of adriamycin/zytoxan/Taxol) for ~5mos. While she is preparing for a double mastectomy, she had severe headache and were found out that she had metastatic brain cancers(my recollection is at the front lobe and at the lower back of the brain w/ 1 spot 4cm in size). She was admitted in a hospital for cancer patients and was started with methotrexate which we were told can penetrate blood brain barrier. My sister was still able to walk on that time with minimum assistance. But since the severe head pain persist, they did whole brain radiation therapy for 2 weeks. The head pain seemed went away since she is not complaining about it but she complains about leg/butt pain. Also, she cannot walk any longer since just trying to sit down, she is shaking. Oncologist mentioned she will under observation for 2 weeks and they expect for the worst. She seemed so agitated and confused at times now and seems having hallucinations as well. Also, her voice is slurred and it was hard to understand what she is saying. Is this normal? Will this symptoms go away? What might be causing her not able to walk and will this be permanent or just short term? Will the hallucinations go away? Will the slurred speech improve? She seemed conscious when you talk to her.

Need consensus and advise from you good people here. Just looking at her in tremendous pain is too much. But seeing her hallucinating and not being able to walk and take care of herself is even more painful and as a brother I cannot take it any longer. I'm hoping she will improve with time. Thanks in advance.

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Reply # - May 22, 2013, 09:28 AM

catdander
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I'm so very sorry your sister and you as well are going through this.

I wonder if the brain radiation has had a chance to work. It can take many weeks.
As for her butt and leg pain it sounds as if she could have sciatic nerve pain which is very common in the general population so it could be cancer related or not. I hope the her doctors also focus on her comfort.

I will ask a doctor to comment on your post. Though doctors aren't allowed to advise people who aren't there patients may have some general insight here.

Just an FYI, when cancer spreads the cells are from the original site, in you sister's case her breast cancer spread to the brain is still breast cancer with cells from the original tumor.

Janine
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Reply # - May 22, 2013, 03:34 PM

Dr West
Posts: 4735

I'm so sorry to hear about your sisters diagnosis and recent problems. My fear is that she has leptomeningeal carcinomatosis, which is cancer cells in the fluid bathing the brain and spinal cord. This is a dreaded complication of a cancer that can be very hard to treat, and unfortunately many patients don't respond to treatment and decline further despite our vain attempts to treat it effectively. Sometimes it can improve with our attempted treatments, but there's a good chance that even with the radiation and chemo given, her symptoms may continue to worsen, I'm sorry to say. Only her doctors would be in a position make a real projection about what to expect from here.

Good luck.

-Dr. West

Reply # - May 23, 2013, 10:48 AM

dr cianfrocca
Posts: 49

I'm also sorry to hear that your sister is having such a difficult time. I agree with Dr West. Her symptoms are concerning for leptomeningeal involvement which is very difficult to treat. Her physician can guide her in further work up such as MRIs of the brain and spine that may clarify the issue. And then her physician can guide her in treatment options.
I wish her all the best
Dr Cianfrocca

Reply # - May 23, 2013, 02:31 PM

johnjan
Posts: 2

Thanks a lot Janine, Judy, Dr West and Dr Cianfrocca for the thoughts and advise. It helps me get an insights on what my sister is getting through. She was treated at Johns Hopkins. It is really so tough for me to see her in extreme pain and suffering. I was told by my brother in law that they stopped treatment last friday(after last whole brain radiation therapy which lasted 10days) and told him that they already did all the best they can. But they will continue giving pain medication like morphine/MS contine for pain. They asked us to decide if we wanted to bring her home or take her to rehab or hospice. Results of whole brain radiation/chemo will be known 2wks after last friday. If she gets better, then she can come back for more treatment. But the Oncologist mentioned this cancer is difficult and expect the worst that is why we need to decide now where she should spend her remaining time. I am a thousand miles away from my sister and visited here 3 wks ago at the hospital and stayed for a week. Accdg to her friends and my brother in law, her conditions are worst than before. I tried calling her and she have very slurred speech and I can barely understand her pronouncing my name. I plan to visit her again soon.I am still hoping for a miracle up to this point but I'm so scared what is gonna happen next. I feel like I'm still in denial on the reality but I wanted to know your expert opinions.
Based on above latest, does my sister still have a chance at all no matter how low it is? Please give me your honest thoughts and I will take it no matter what.

Reply # - May 23, 2013, 07:47 PM

Dr West
Posts: 4735

I'm sorry for what she and your whole family are going through. It sounds like it's been a very rough go for her lately, and though I think there's good reason to be concerned about how things will go, we couldn't say with certainty what to expect.

Good luck.

-Dr. West

Reply # - May 24, 2013, 06:02 AM

dr cianfrocca
Posts: 49

Her oncologist is correct in that it can take a couple weeks to be able to see positive effects from radiation. And this is a very difficult situation to treat and the options are few. I can only imagine how difficult it is for you and your family. I wish you all the best.
Dr Cianfrocca

Reply # - May 27, 2013, 02:11 PM

janetxia
Posts: 1

Johnjan,
My heart felt so heavy while I read your posts. I sincerely hope your sister gets better and the treatment will show results. I pray for your sister.
I am in very similar situation. My sister is on the other side of the earth. She was diagnosed with triple negative breast cancer in 2010. Cancer was found in her lungs last summer, in brain 2 month ago. She had headaches and dizziness. After radiation therapy and chemo, now her condition is stable. We pray that her conditions will stay under control and get better.
I followed Dr. West to this forum. While I was doing research, trying to find a cure for my sister. I came across this old thread that Dr. West hosted (is it the same Dr. West?) :
http://onctalk.com/bbPress/topic.php?id=534
We feel that DCA + TM may have some chance. My sister is trying to get treatments from Medicor Cancer Centre. Dr. West, do you have more update on DCA or TM?
Hope this info can be helpful to you.
Hope your sister's condition can improve soon!

Janet

Reply # - May 27, 2013, 06:36 PM

Dr West
Posts: 4735

I don't know what "TM" refers to, but I'm afraid that the only things I've heard about DCA (dichloroacetate) has been negative. To my knowledge, nothing has been published, which is itself a bad sign for a treatment that was purported to be miraculous: 4-5 years should be more than enough time to demonstrate that a drug is anything close to a miracle. But some people I've spoken to who were close to and even involved in the original work have intimated (on the condition of anonymity) that the work has subsequently emerged as bordering on frankly fraudulent.

-Dr. West

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