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Neurological problems, brain "damage" not from radiatio


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This cancer journey has been an emotional rollercoaster ride from the very beginning. Receiving a new plan or a new treatment option has always put us in the up swing of the emotional ride. After yesterday's doctor’s appointment, I feel once again, on that up swing high.....I'm ready for another fight. I just hope Mom still has some strength in her to lead us into battle again. My last post was so hard to write...but today, I feel myself exhaling, now that we have some hope.

As difficult as it has been to get Mom out of bed and to her doctor's appointments these days, my aunts and I managed to take her to meet with her Oncology Radiologist AND her Oncologist. Her onc had mentioned at our last appointment that he wanted her radiologist to go over the MRI in more detail with us and also wanted him to examine Mom.

While we were waiting in the lobby to be called in, I ran to get Mom a hat that volunteers drop off for chemo patients. As I was walking back to the lobby I ran into her onc in the hallway. He asked how Mom was this week and I explained that there hadn't been much change since we put her on the steroid again. After out last appointment with him, so many questions started to come to mind. I wanted to know EXACTLY what the cancer was doing, how big tumors were, what the PET report said in detail (since I can now understand the medical abbreviations on the PET report) etc. I asked him if Mom's cancer had metastasized in her body. He explained everything in such detail that it was all so clear….finally.

He said, “No Tova, her cancer has not metastasized all over her body. Her cancer is a metastatic cancer, but it is not spreading uncontrollably at this point…..It is starting to mutate again and find other areas. But if you remember, when your mom was first diagnosed, we did 6 rounds of chemo. It drastically shrunk the tumors and killed many cancer cells that were floating around. We were able to stop treatment, to take a break, because she was practically in remission for about 18 months. Then we found lesions on her spine and pelvic bones, so we did another round of chemo last spring. But we were never able to check how that chemo was working, because we were then focused on her headaches. Once we found that the cancer had spread to her brain with multiple brain mets, we put all our energy and treatment into the priority of the dealing with the brain cancer. Because of that, we had to temporarily stop her ongoing dose of Avastin. Avastin does not kill cancer cells, but holds them from progressing. We stopped Avastin in July when she started radiation. Because she has not had more chemo and because Avastin was discontinued, what we are currently seeing are the tumors starting to mutate and find ways to grow again. We are not holding them at bay, keeping them from growing......But we can start this kind of therapy again. This is what Tarceva could do for her.

But Tova, what we are focusing on now, is the fact that your Mom is ‘not present’. She is not mentally here with us right now. We need to bring her back to us before we consider more options that would attack the cancer in the body. The brain function is our top priority. If we want to talk to other doctors, other specialists, then we need to do this. We need to find out WHY she appears to have brain damage and we need to figure out how to bring her back before we fight the cancer. We need her present in order to fight with us.”

Suddenly, it was all so clear. I understood where we were, what our focus was and what the main concern was. We then met with her radiologist and he did some tests with Mom. Asking her to touch his finger and then her own nose. Asking her to touch her thumb to her other fingers. Asking her to do it with her right hand (after she had finished with her left hand). These tasks were difficult for Mom. It took a lot of concentration to comprehend and do what he was asking. He asked her how she was feeling and after some delay, she said that she feels like she comes in and out. That she’s confused.

He explained that in the thousands of patients whom he has treated for brain tumors, he has never seen radiation side effects this severe. Most radiation side effects are memory loss and usually they don’t see the effects take place for about 6 months to a year following treatment. It’s only been two and a half months. He believes that this has nothing to do with radiation. It was not caused solely from radiation and the fact that some tumors have died and others are stable for now, would mean that the tumors are not causing this either. He explained that the tumors that have not yet responded to radiation are no different than they were when we first found the brain mets. So, if it were these tumors that were causing this problem, we would have seen symptoms back in the summer.

He said it could be a combination of everything she has been through in the past 3-4 weeks. Being overmedicated on Hydromorphone (especially since she is highly sensitive to substances), combined with the steroids being stopped too early (which could have caused the brain to swell), combined with some radiation side effects....etc. His opinion was that it appeared to be a chemical imbalance in the brain at this point.

So, where do we go from here? He said that because this is a neurological problem, most doctors would send her to a neurologist. But he said, and I quote, “I’m going to be blunt here, but in my experience, neurologists are pretty much useless.....They do a lot of tests, but then never come back with any significant answers or solutions.” We all laughed. My aunt made a comment that she dated a neurologist once and that she agreed with him. More laughter. Then he said, “Well, I too have an ex who is now a neurologist and maybe that's where my stigma comes from” Again, we were cracking up!!! Gotta love a doctor with a great sense of humor. =)

We discussed our options: 1) Let it go away on it’s own and let her brain return to normal, which it might do over the next 6-12 months. 2) Put her on a medication used for Parkinson's disease. It has been very successful with other neurological issues. Or 3) Start her off with a very safe, lower than normal dose of a drug called Provigil which stimulates brain stem activity and could possibly bring her back sooner.

He stepped out and discussed it with her onc. They both agreed that they wanted to start her on Provigil. Once we get the new insurance pharmaceutical plan in place with Medicare, we'll pick up the prescription.

It gives us hope and hope can make miracles happen. I would love to see Mom come back. We all would. And then, we can possibly get her on Tarceva to keep the cancer away for as long as we can.

Right now, our job is to keep up the nutrition and keep her physical strength up as much as we can.

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Wow do you have any idea how lucky you and your mom are to have a doctor who is willing to go to such lengths to help?

I pray that what they are doing will work. I saw first hand how hard it is not only one the patient but the family when my mom suffered from mini strokes when she had lung cancer. In some ways that was much harder to watch happen than the other things.

So I do with you good luck and tell you that myself and I am sure many othere here will keep you and your mom close to our hearts and in our prayers.

One question before I close. What medications are being given to her now and have they ruled them all out as being the cause of her mental problems? Just something to think about.

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That sounds really encouraging, Tova. In many ways (except for the cancer part) it's similar to my mother-in-law's experience that I recounted in some detail a couple of weeks ago. And you've got one terrific doc there. For my MIL, the guy who was coming up with the Alzheimer's diagnosis was, you guessed it, a neurologist, and it took a sharp young resident to get things back on track. Lots of Aloha,

Ned

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Ned, I read everything you said a few weeks ago. Even read it to my aunts. I think about it every day. And as our dr.s have said, this could wear off in the future, but let's try to get it done faster.

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Tova, I read every word of your post and am amazed at the time your Mom's docs take to explain everything in absolute detail in a manner that any layman can understand. And I am amazed at your ability to absorb it and translate it so coherently to us. Thank you. It does sound promising and we will all be waiting here with you for this new treatment to do it's job. Be sure to keep us updated.

Judy in Key West

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Hi Tova,

I wanted to add my words and thoughts of support of your, your Mom, your family and the continued fight.

I admire your strength and your love and your support for your Mom! Best wishes as you continue on this rollercoaster and here's wishing that Provigil brings your Mom back to you.

Blessings,

Kimberly

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  • 2 weeks later...

Just to update...

Mom is not responding to the Provigil. It has woken her up, but there isn't much more clarity. She smiles when I walk in to the hospital room. Smiles at my 2 beautiful little daughters, smiles at her best friends...but she can't speak. Can't tell us what she's feeling or thinking. She's coming home tomorrow and I've ordered hospice. My aunts and I feel that it is time. Her oncologist said gently to me, "I don't think it's unreasonable to have hospice come in now if you're ready. Remember that we don't want your mom to suffer and we are trying to preserve her dignity and quality of life. Hospice will be sure to do that..."

We've found a hospice agency that came highly recommended. I think I can see it my mom's eyes that she's scared to come home. She's lost a sister to breast cancer, a brother to AIDS and her mom died from congestive heart failure 4 years ago. Even though her mom was 88 years old, it still didn't seem ok to lose her. She was also an artist (like Mom) and had her 1st art book published when she was in her 80's. There's just been so much loss in our family....it's so hard. But when Mom hears that she's going home, I think she is scared because she feels we're not telling her everything. She feels that we're bringing her home to die. And even though treatment has stopped, I don't feel like she's ready to die. Her body is strong. It's her brain that has suffered so much.

The oncologist explained that it's usually not the cancer that takes one's life...but the complications that come with cancer and treatment. He said that the tumors could grow in her brain, causing the heart to slow down and stop. Or it could be a blood clot or pneumonia. He said that he can't tell me how long she has because these things can happen suddenly or not for a long time. He did say that she would most likely NOT have 6 months.

I'm off to the hospital now. My heart goes out to everyone who has walked this path before me. I see you all in a new light...and am amazed at your strength and ability to go on. I don't see that light at the end of my tunnel right now....if it weren't for my 2 little girls who need their mommy, I don't know if I'd have the strength to go on.

We're all joined and connected on this web site through our pain and suffering. Thank you to everyone who has ever read my posts or responded...or felt the connection that I so often feel when reading other stories. I respect and admire you all.

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Reading my post over...I have to clarify....my mom's body is strong in the sense that her vitals are strong. I must be clear that even though she smiles, she also look vacantly at us and sometimes looks right past us. She can no longer walk and can't follow directions if the physical therapist tells her to lift her arm, raise her knee, etc. She has tremors and only yesterday, tried to grab a spoon off the food tray. But we do everything for her. I just wonder if she's in there somewhere....I always wonder. Which is why I tell her how much I love her ALL THE TIME. Anyways, I just wanted to clear that up because when I read over my post...it sounded as though she was physically strong.

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((((((Tova))))))

You know I feel like a kindred spirit to your mom since we both underwent WBR at the same time. I am so terribly sorry that all this is happening.

When you said they might try her on an Alzheimers pill, do you know if it was Memantine???? I am presently on a linical trial using that to see if it helps after WBR.

Tova - if you need anything or need to talk - just PM me PLEASE.

My thoughts and prayers are with you, your mom and your entire family.

Hugs - Patti B

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Tova, it breaks my heart to read your post. I'm sorry for what your Mom and you and all your family are going through right now. I think that having hospice in is the right thing to do. Skilled hospice staff can help your Mom be comfortable but also help you and your family know what to do and how to get through this sad time, however long or short it may be.

I can't say I know exactly what you are going through because it is your Mom. But when my friend was comatose and dying, I talked to him for hours like he knew me and understood what I was saying. He never opened his eyes but I believe in my heart he knew I was there loving him to the end. I still love him. So yes, keep telling your Mom you love her and anything else you want to tell her. I believe she is still in there somewhere.

Judy in Key West

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Dear Tova,

Bill, my husband, is in hospice. He had no further chemo available, and had lost so very much ability in his right arm (shoulder met). His neck has a growing node, which is unwieldy when he turns his head.

Bill had WBR over two years ago, completed June 27, 2007, and had short-term memory issues. As time went by, he had trouble finding words. However, all seemed pretty good, for the most part.

Yesterday morning before the healthcare worker came to shower him, he sat at the kitchen table with a vacant stare. I asked him what the matter was, and he said, "I don't know. I don't know." He didn't know who I was.

I tried to get him to his chair (medic-chair which has many features) by the window. It took 20 minutes to move him step-by-step only about 15 feet. I kept talking continuously to him, explaining how to take one step, then another.

He slept. When he woke, he recognized me, and was as clear as a bell. His mind was "back."

The healthcare worker had no trouble with his bath, and he conversed as though nothing had occurred. He had visitors (my sister and my BIL) who had brought him some eggplant parmesan (homemade). He laughed and had a wonderful time.

What was that incident? I don't know. What I do know is that I will keep talking to Bill - no matter if he is "in there" or not. My sense is that all of this is a process. He will always be my Bill - no matter what.

Keep talking to your Mom. She is definitely in need of that communication, and importantly, so do you.

My heart understands where you are, and it goes out to you and your family.

Barbara

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(((Tova)))

I've been keeping up with your posts, word for word, I have felt like I've been with you thru the ups and downs. This is such a difficult and uncertain time.

I don't see that light at the end of my tunnel right now....if it weren't for my 2 little girls who need their mommy, I don't know if I'd have the strength to go on.

Hang on to this...your kids- they will get you thru..whatever unfolds. Take it a minute, a moment at a time if you have to. That's how we made it thru.

I'm here if you need me.

I've been there and I understand.

Love and prayers for your mom, you and your girls.

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