Re: My leptomeningeal journey
 

--- part 11 ---

After I had my brain tumor removed it was a weird time. My kids were off for the week with their dad, my parents were caring for me, I was walking slowly, I had increased ear ringing, it was so hot and dry and everything seemed surreal. I thought I was dying but then I looked up the side effects of the dexamethasone that I had been on and it matched up to be related including muscle wasting, acne, and more. Oh, well that is good to know. Actually while the dexamethasone saved my life at the hospital I knew that it wasn't good to be on it long-term. It depressed the immune system and increases blood and CSF glucose levels -- totally bad for cancer. I weaned down quickly and a friend who's wife died of primary brain cancer sent me some links about Boswellia Serreta which also reduces cerebral edema without the side effects. I asked my naturopathic oncologist about it and decided to take the plunge, I could always take more dexa if I needed and frankly my threshold for cerebral edema was really quite high at that point. I found that taking 6-8 caplets a day (two per dose) was equavalent to 4-8 mg of dexa per day. You can also mix the two to get the benefits of each and not have the side effects which was good to know. The Boswellia had an added benefit in that it also is used to treat arthritis and my bone and PET scans that were done after my brain surgery showed pre-arthritis in my shoulders from chemo.

Evidently if I had rads to the tumor before surgery then there would be less of a chance of disease spread when they operated on me but we didn't have that chance at the time as my disease was so progressed.

I started researching a ton and delved more into this board, Inspire.com, joined the breastcancer.org brain mets board, and read a ton of research about cerebellar mets.

Basically anyone with brain mets is dealing with an under-researched condition. They historically excluded patients with brain mets from drug trials and couldn't even decide on how to measure any improvement in disease progression until pretty recently. Cerebellar mets and HER2 brain mets seemed to be something that you would expect to find more about and yet there wasn't that much out there. The ASCO recommendations for HER2 brain mets from 2014 rather embarrassingly were based not on studies but on what they thought was working best. Oy.

I have since read that there is a 40% chance of developing leptomeningeal mets if you have surgery in the posterior fossa, the area of the brain where the cerebellum resides. This was never mentioned. I read the stories here and on the http://www.brainmetsbc.org/ site about treating brain mets and I asked my team to do more. They were hesitant. I said I have young boys, this isn't a game to me. They wanted to wait and see. They didn't know about that increased risk of leptomeningitis for me.

I arranged to have LINAC SRS to the tumor bed -- the neuro-onc said 4-6 weeks after surgery. I don't think it made a stitch of difference in my outcome now, but maybe in the tumor bed itself. I had 5 fractions and did water-based fasting during treatment to try to increase its efficacy. My hair fell out in the treated area a couple weeks after treatment started as I was told. A bummer but from the front you could still see nothing, I was still just me.

In October I went down to see a HER2 brain mets researcher at UCLA. There was no accounting for the fact that I had a pathologically complete response to neoadjuvant chemotherapy either. I had mets and that was the end of the story. The MO said that she would have me take lap/cap or kadcyla for the rest of my life, probably starting with lap/cap (Tykerb/Xeloda -- see Landscape trial of 2013) since my brain was my first site of mets. We felt discouraged but knowledgeable.

My team in Seattle still said wait and see. They could put me on drugs that would make me sick or they could just wait and see what I was dealing with. I was given a 50% chance of living longer than two years -- and they thought those were good odds.

I had no presentation of disease but I was completely expecting the other shoe to drop. I decided to just sit tight and enjoy my kids because nothing was coming too easily.

Re: My leptomeningeal journey
 

--- part 12 ---

After my brain surgery from everything I could gather from my team and my research I learned that there was a high risk of my brain mets coming back and that there was a dearth of information about cerebellar mets. The more I looked and my father looked the more it was impressed on us that they just don't know. The more I spoke to professionals the more I realized that they don't know either and I became embarrassed for them, honestly, to be practicing in this prestigious field of neuroscience and yet at the same time completely hand-wringing about the blood brain barrier.

My recovery from surgery and brain SRS was amazing actually. They said my balance might be off, that I might need to walk with a cane. Instead I bounced back with great energy and was practicing qigong and ballet at home. We were amazed at how well I was doing.

I knew I should speak to more specialists and I tracked down HER2 brain mets researchers at UCLA and UCSF. I downloaded and compiled all my records and shared them with my dad who noticed that the 9/3 treatment planning brain MRI for my SRS said this:

"Post resection of the right cerebellar metastasis, new nodular/mass-like contrast enhancement within the resection cavity.
Given the enhancement characteristics of the original tumor and the
morphology of this enhancement, local recurrence of the metastasis is
suspected"

I asked my team about it and they said, yes we always have the radiologist review the imaging but we often disagree. It was a brain tumor oncology team that was telling me this, the radiologist didn't know what they were seeing obviously. Right?

So I sent my records off and a few weeks after SRS I went and spoke to a specialist who said "sure, I would let you get on systemic therapy for HER2 brain mets. It isn't standard of care but sure, I would give you lap/cap (Tykerb/Xeloda) or Kadcyla (TDM-1)" She said I would be on them for the rest of my life and both treatment regimes come with toxicity side effects. She referenced the Landscape trial from France (2013) that was the closest to my case. (get a full copy of the report if you are interested, there's a lot more than just the abstract). I asked about my PCR to neoadjuvant treatment and she said it means nothing, you are metastatic and, basically that's my lot. I had a hunch that it had just never been studied and so it didn't mean nothing, it meant they knew nothing. It was discouraging but eye-opening in many ways.

Okay then, so I feel better than ever, I bounced back, I'm taking care of my young boys, my neuro-onc team doesn't want to do anything, the consultant says I can get on treatment for the rest of my life. This doesn't sound like a win-win or anything easy for someone to navigate under the best of circumstances.

My neuro-onc does a post-treatment MRI sooner after SRS than is standard practice, in order to see if it worked. Even the doc at UCLA said "that's so soon". So six weeks after I finished SRS I had another brain MRI. This time the results were even more weird and my neuro-onc said, it's either atypical leptomeningeal spread or else its atypical swelling. She said I had atypical swelling at the surgical site after my craniotomy so maybe it was me. She asked about symptoms and I said that I had pain on my facial nerves, roving pains and numbness. That's not what we are looking for she told me. It wasn't what she was looking for but it wasn't normal for me, it was similar to pains I had from my original brain tumor and they were increasing -- but it wasn't brain tumor?

My head was reeling -- I either have a dire diagnosis or its nothing. I cried. They told me we have to rescan in a month and see what happens. How fast does HER2 grow in the CNS I wondered. If it was just swelling they gave me no instructions for things I could do to help my brain heal (I have a list that I will post, of course I do, and I'm happy to share). So I again found myself in the position of waiting for the other shoe to drop.

Re: My leptomeningeal journey
 

Agness, this reads like a gripping novel! Thank you for sharing. I look forward to reading all your posts.
I get brain mris quite frequently, every 6 weeks, yeah I'm not too crazy about the gallodinium overload, but it seems like the lesser of 2 evils. Anyways, I continually ask if there is evidence of LM. In one of my reports, the radiologist wrote "no evidence of leptomeningeal disease" and "brain stem spared". Each report is a written up a little differently. And in one he wrote, "clinical trial drugs not working."
So, I'm trying to read the reports as carefully as I can and look for any evidence of major change. Of course, under RECIST I have been classified as stable. Nope, not good enough so onto the next drug.
All my best, letranger

Re: My leptomeningeal journey
 

--- part 13 ---

(you have probably been waiting for me to continue, well here goes )

I had symptoms of occipital and trigeminal neuralgia from my original cerebellar tumor that were misdiagnosed. I joined boards for patients who had neck and facial pain and you should know that they are out there and their condition is referred to as "the suicide disease" and they should have your utmost sympathy as well. It turns out that these conditions are a subset of symptoms of a cerebellar metastasis -- but docs are told to look for symptoms of brain involvement that look like stroke, they totally don't get the back of the brain at all. Welcome to the world of the undiagnosed, misdiagnosed breast cancer patients.

After my crainiotomy at the end of July, where I almost died before they figured out I had this huge tumor in my head, I rebounded really well. While the cerebellum is responsible for movement coordination and synchronization, if you grew up doing movement studies at all then your brain distributed the functions around your brain and the cerebellum is important but not as critical. My starting to study dance at age 5 was suddenly a huge gift. I used ballet barre and qigong all the way through to help recover from initial treatment and to deal with having had my head cracked open.

In October I saw the neuro-onc, symptoms of trigeminal neuralgia were there again and increasing. "No, that isn't what we are looking for" she told me. I went home with stabbing pains in my right face and numbness in my cheek and still it was getting a bit worse. "Who am I supposed to see about this if not you?", I asked her and she agreed that it was her area and she would keep tabs on it. I keep hearing that in my head now, "that isn't what we are looking for" and it is so wrong.

Just after Thanksgiving I had my follow up brain MRI and low and behold, what they had been unwilling to see and diagnose me with in the months before was suddenly clear - I had leptomeningeal spread of my brain tumor. Great. So now we go from a diagnosis presumption of "atypical inflammation" to an absolute worst case scenario. Not only that but a few weeks before my medical oncologist told me I was getting too involved in my care. If I waited for her I would be dead.

I couple days went by, a lot of tears on my part and I didn't have the heart to tell my kids. I didn't know what to tell them. But still no plan for addressing the LM. Hello? On the fourth day my body had enough and I had swelling on the right side of my brain (yes I'm quite good at knowing when I have cerebral edema now), a stiff neck and my right eye felt puffy and had pressure. I said I don't know what the bad thing is that you are waiting for but my body has had enough. I called early in the morning and told them before office hours in a voice message that I was going to the ER and they called back once they were in the office and agreed. They said they let the ER know I was coming. I dropped my son at kindergarten and had a friend drive me to the hospital where I spent the next three days.

Do you know that I passed every single neurological assessment at the hospital. I was checked up and down, this way and that, in every department there was a check -- I passed them all with flying colors. This time I was onto them and I told them, I've always been atypical and I will pass all of your tests but I have cancer in my head, it is very clear that there is cancer in my head and I want IT Herceptin.

Re: My leptomeningeal journey
 

--- part 14 --

On Friday December 4, 2015 I had my first dose of IV Kadcyla and once that finished up in pre-op they wheeled me into neurosurgery to have a pediatric Ommaya Reservoir placed in my head. My family and friends were freaking out that I was having surgery and in the hospital again but for me it was what needed to be done -- and probably should have started sooner.

I definately recommend getting the pediatric sized Ommaya if you can swing it, it is much smaller and no one can see it. I do have a scar from the cut into my scalp but you can't tell. Oh, and they don't have to shave your head either, it takes a new surgeon to be willing to do this and you have to push for it -- tell every person on the surgical team that you don't want your hair cut and they can goop you up with vaseline instead. I think their rare concern is with meningitis but I'm healthy and strong so it wasn't an issue for me. Why not cut your hair? I'm of the opinion that anything that helps your body feel stronger, healthier, more normal can only help you to fight cancer better. When we are downtrodden, let them take us from ourselves without thinking about it we aren't as strong. Fight for your body and yourself. Fight to be treated as a person. Have them err on the side of being conservative with your body, not medically, they aren't the same thing. It's about treating the cancer and not messing up your body, or doing the least amount of damage possible.

What can I tell you about the Ommaya Reservoir...

The Ommaya Reservoir is a type of port into the skull and brain, used to deliver chemotherapy agents into the central nervous system. It was developed by Dr Ommaya for use in pediatric patients, some of whom present with cancer types such as leukemia that are likely to spread into the CNS and for which intrathecal therapy may be beneficial. If you watch the start of the documentary "Cancer: The Emperor of All Maladies" the pediatric oncology team is actually discussing placing an Ommaya port into the toddler in the first parts.

The brain has no opening, no easy access points. Over the years neurosurgeons have learned that there is an area on the right brain that has less activity, that is between more critical areas. It is through this area that they place the Ommaya catheter, to position delivery of the drugs deep into the center of the brain where the spinal fluid is generated. They also use it to place shunts and stuff when folks have hydrocephalus or meningitis or brain mets -- but only some kinds.

It did hurt, gave me a headache for a couple of weeks where I had to use hydrocodone and Tylenol. The area that had been injured hurt in my right forebrain and I had an odd pressure behind my right eye -- but it didn't feel the same as the cancer did when it was causing pressure to my eye. Doing movement hurt too -- I guess I proved that your brain really does move around when you are doing activities.

I had to treat myself as if I had a brain injury -- because I really did. I took extra omega-3 and tried to get extra rest but it was a long month. Plus the ketogenic diet I switched to also at the start of December also is known to cause alterations to the sleep pattern. After the first two weeks the pain settled down a lot and now it just feels weird when I get dosed intrathecally.

What I learned from experimenting on myself, with some sage advice from others who have dealt with LM is this:

- drink an extra liter of water on days when you receive IT treatment. You don't want to be dehydrated at all, you are introducing drugs right into the CNS and you want to stave off chemical meningitis
- steroids help reduce headaches and inflammation -- I have not gotten IT steroids so I found that taking 2-4 mg of dexamethasone a few hours before treatment helped tremendously
- extra strength tylenol - I would take 500 mg with the dex, about 2 hours before being treated and I wouldn't get a headache
- boswellia serreta -- I take this every day since surgery last summer. It is commonly used for arthritis but it also help reduce cerebral edema -- chemo messed with my body and caused some subclinical pre-arthritis in my body. I take 600 mg 2-3 times a day and so I include it in my ommaya headache helpers.

What frustrated me to no end was that IT Herceptin is new and not well documented, plus brain mets and LM are completely underresearched. When I tried to tell my neuro-onc what was helping me she instead decided that I was masking symptoms of mets inside (not outside) of my cerebellum and learned not a damn thing from me, the patient. You know, the actual person with a hole in her head and an awful diagnosis. No wonder neuro-oncology is so far behind, I am constantly amazed by how lame they are and it further reinforces to me that I need to be my own advocate because on their own they will try to kill me with the same-old, same-old and the path is littered with corpses to attest to that.

About Your Ommaya Reservoir Placement Surgery for Pediatric Patients
https://www.mskcc.org/cancer-care/patient-education/about-your-ommaya-reser voir-placement-surgery

Re: My leptomeningeal journey
 

Agness - Thank you for sharing your story. I have read only snippets on Inspire and BCO. I hope things are going well for you now.

Re: My leptomeningeal journey
 

--- part 15 ---

My first brain scan after starting IT Herceptin was a month later. While my symptoms of facial nerve pain resolved within a week of starting treatment the scan showed disease "pooling" in pockets around the cerebellum, predominantly on the right side.

My neuro-onc said "it doesn't look like anything is getting in there", there meaning the posterior fossa, the lower chamber of the brain where the brain stem and cerebellum reside under the tentorium, a rigid membrane separating it from the cerebral cortex. "Nothing?" I said. "We are doing IV Kadcyla, IT Herceptin and I switched to a ketogenic diet and nothing is influencing anything?" I was in disbelief to be honest.

MRIs cannot see less than 109 cells, so there has to be disease massing for it to be seen but my disease progression was dismissed for months even as it was evidently growing as a film on my brain. I learned after neoadjuvant TCHP that MRI also can't tell the difference between tumor and active scar tissue formation -- the lymph node that lit up after 6 rounds of treatment -- it was just scar tissue at surgery.

I kept asking for more details, how could they know there was no scar tissue if it looks the same, scar tissue is also larger mass-wise than tumor based on my presentation, couldn't they do a metabolic scan (PET-MRI) of the brain to see if there was any effect of treatment? I was told no, that whole brain radiation was my only option.

So now I'm going from months of being told "we don't want to hurt you" and watchful waiting to "your only option is to nuke your head". Yes, sometimes whole brain radiation is the only option but recent studies show that as patient live longer that they are experiencing the serious cognitive side effects of whole brain radiation.

I had heard that rarely, but it had been done before, that they could just irradiate the cerebellum. My oncology team wouldn't budge though. My partner was like if whole brain is the only option then we are going to talk to more people. And so we did.

I was told that without treatment that I had about 4-5 months before a steep decline, and that was after I tracked down a new radiosurgeon who was willing to think outside of the box. She is unusual in that she is very familiar with radiation technologies as she had been involved with LINAC, gamma knife, cyberknife, tomotherapy, and even proton therapy in her professional life. She felt that for my case either tomo or proton was the best option both now and going forward should I need re-treatment.

Since I didn't have time to wait to see if the 100 mg dosage of IT Herceptin was going to penetrate deep into the pooled disease we opted to go for partial brain radiation. I had four weeks of daily rads to the back of my head, plus the edge of my occipital lobe and my brain stem to C2. A very uncomfortable 2-hour spinal MRI ruled out disease spread there -- plus I have 4 spinal fluid tests that show no evidence of disease spread.

What happened to me is rare but not unheard of and it could have been anticipated. The fact that I was even discussing leptomeningeal disease didn't influence the conversation at all from the beginning --though it wasn't like I was saying what if I have an aneurysm or something. I think they just don't know and so they are blind to the evidence in front of them.

The really sad part is that when I look back at standards for screening for brain mets in HER2 gals that by the time I started to have symptoms last spring that I was always going to need a craniotomy and that very likely I was also always going to need to have my cerebellum irradiated -- we just moved out the treatment of those conditions by a few months.

Throughout my recently brain rads and going forward I am now undergoing weekly craniosacral massage to keep tissues open and flowing (the posterior fossa is a confined space, they worry about pressure), also weekly vitamin C plus mineral infusions (at an outside facility), continued weekly acupuncture, and nutritional supplements under guidance of my naturopathic oncolgist. I resume IT Herceptin today.

My next brain scan is in a few weeks and I will report back on what the findings are. It will still be early but hopefully the keto diet, 18/6 fasting and every other damn thing I threw at it made the rads as effective as it could be -- plus my September LINAC seems like it worked locally where the tumor bed was, so there's a bit of evidence that my cancer mutation is susceptible to rads.

Re: My leptomeningeal journey
 

I had my first cerebrospinal fluid labs run this week, the first since early December.

The spinal fluid was clear, colorless and showed no debris. There were no red or white blood cells so no bleeding or infection. My glucose was high and my protein level very low. No circulating tumor cells were observed.

With my cancer having spread from the original brain tumor site and growing on the outside of my brain there was concern that the disease can spread anywhere. Cancer cells will suck down glucose and shed protein -- but that isn't happening in me. Thankfully my results are brilliantly normal with no signs of disease.

Hooray for small blessings!

I will have four scans in the next few weeks: brain and spinal MRIs, PET (metabolic scan with radioactive glucose) and torso CT. They want to restage me now that I've had brain rads, to help guide treatment going forward. Hopefully having drugs put into my spinal fluid plus partial brain rads and everything else I've done has helped kick the disease. I will keep you posted.

PS - Three oncologists have told me they have seen HER2 in patients who were systemically negative, go back out of the CNS to infect the rest of the body. I haven't found any articles about this but I think that these docs at Seattle Cancer Care, UW Medicine and UCLA Health are speaking a truth we need to know.

Re: My leptomeningeal journey
 

That's great news, Ann! Hang in there, and keep us posted.

Re: My leptomeningeal journey
 

Agness,

So good to hear that you are doing so well! I'm super happy for you and your family. Hoping your upcoming scans provide continued good news for you.

Take care,
Brenda

Re: My leptomeningeal journey
 

I had my first scans this past week since my 12/28/15 scan showed progression and my oncologist said "nothing is working" and I was recommended to have whole brain radiation.

I had a PET/CT and then MRI of the brain and spine. There are no new lesions. In the area where there was disease, in my cerebellum, there was a significant reduction in contrast enhancement and far less LM. This was amazing to see just 5-6 weeks after finishing the non-standard partial brain rads to the posterior fossa region (cerebellum, brain stem, edge of occipital lobe).

I worked up from 30 mg IT Herceptin twice weekly to 100 mg once weekly, stopping during brain rads and resuming treatment the next week. I started my modified ketogenic diet in December and I did intermittent fasting during rads. I also have had weekly 25 mg of IV vitamin C plus minerals, weekly craniosacral massage to my head and neck to keep the treated area open and draining well. I continue with my Chinese herbs, nutritional supplements based on my blood labs and what was being treated. I also have done citrus oils and zest, cannabidoil, soapberry fruits, cottage cheese and flax oil, meditation (some), and been working on my chakras (going where no Ann has gone before, I figured why not).

Amazingly it is all working. I'm in disbelief but relieved to finally get some good news after months of poor scans showing progression. My next brain and spine MRI will be in two months and I will continue weekly IT Herceptin until then, plus my keto diet and the complementary and alternative stuff. I'm not NED but I'm closer than I've been for more than two years.

Fingers crossed, wish me luck.

Re: My leptomeningeal journey
 

Very glad to read good news. Stay wrapped in that place!

Re: My leptomeningeal journey
 

Wonderful news!

Re: My leptomeningeal journey
 

Hi,

Sorry I haven't posted an update in a while. After my first post brain rads scan and spinal fluid test came back clear of progression with no signs of disease, greatly reduced areas of uptake and presumed areas just showing "treatment effect" I ended up going into a phase of brain healing referred to as early onset. It basically involved suddenly needing to sleep more. Like 9 hours at night instead of 6-7 and needing to have a 1-3 hour nap in the afternoon. It was kind of crazy feeling. I'm glad I had the good scans before that happened or I would have been freaked beyond belief.

Soon after, partly because I was out of supplements and hadn't gotten to the store, I stopped taking Boswelya Plus for a week. I remember standing in the kitchen and turning quickly and the room kept spinning for a second. Ack! My doctor and my physical therapist both thought that sounded more like brain swelling so I got back on boswellia and low dose dexamethasone until the symptoms went away.

Then it was April and my kindergartner spent his spring break with a bad case of the flu. Unfortunately I subsequently caught it as well. Coming off of brain rads it felt a lot worse in ways than normal. My head felt worse. I found references that rarely influenza could cause encephalophy (brain inflammation). I let my docs know what was up and my concerns that my injured brain was being hit extra hard. I was firm that I didn't think I had encephalitis but rather that it was possible that my brain might feel the viral infection more. My RO said that while it hadn't been proved he didn't doubt, having had the flu himself, that it was possible. More sleep ensued.

Then one night my brain kept repeating to me while I slept, "Not right, something's not right. Not right. Not right." It didn't seem like cancer, somehow that wasn't what I was feeling. I couldn't tell what was wrong. Then I had sudden onset of positional headaches (head hurts at certain different angles) and it brought back bad memories of my brain tumor symptoms from last year, before my craniotomy. My partner and I were concerned. My neuro-onc said try dex for a few days; it didn't really do anything. My nose and front teeth started hurting me and I told my docs but they didn't know. I told my dad, a retired dentist and he didn't know either. My craniosacral therapist said that there was something transferring pain through my sphenoid bone. I mentioned this to my neuro-onc and still nothing. Since the dex didn't due anything to relieve my discomfort my neuro-onc felt pretty confident that it wasn't brain mets progression causing the symptoms, it was musculoskeletal.

We decided to move up my second post rads brain scan by a week to see what was going on. My brain scan looked awesome, no new disease and basically like it was before. She said to me, "unfortunately you have a blaring sinus infection." Doh! How was this possible as my sinuses weren't hurting and irrigating them didn't do anything. It was the sphenoid sinus -- in the sphenoid bone (!) -- in the middle of the skull. Basically its the worst possible sinus infection you can get because your optic nerves run through that area and your carotid arteries pass through the area. An unchecked infection can blind you and kill you. Nice.

I was started on Auguamentin, an antiobiotic right away and she sent me to an ENT (ear-nose-throat) specialist for a follow up. It was a funny follow up as most people with sphenoid sinus infections have issues and vague symptoms for many months before it is diagnosed. In my case mine was diagnosed by a brain MRI and very soon after it started (within two weeks). Also, while normally this sinus infection is extremely serious, given my brain mets and all that it was a huge relief to have a condition that was treatable. The imaging used to get clear pics of sphenoid sinus infections is actually a CT scan of the head so I had to go up to imaging again (add that additional scan to the many I've had in the past year). There was just a little bit of crud left so, since I was tolerating the antibiotics well, we did a second course just to make sure it was all cleared up. She said she normally might let the patient's body resolve the last bit but in my case she didn't want to take any chances. Thankfully within 24 hours of starting the antibiotics my energy level lifted tremendously and I have had no further issues (knock on wood).

My white blood cell count was just outside of range, I'm guessing that between having my sternum irradiated in 2014 and then my skull, plus neoadjuvant chemo hurting my bone marrow (oh yes it did) that my blood production has been compromised. The things they don't tell you -- and why us HER2 gals need to press for less treatment if we can in the future because I could do without cancer treatment damage, especially since it doesn't look like it helped at all (chest wall rads after a PCR).

Over the past month I have been cycling a bit in the neighborhood, walking the boys to the park, not having to nap so much -- though I'm still super tired at night by 9pm. I get around 6-8 hours of sleep most nights, sometimes disrupted but more usually during my luteal phase as it has been since I was breastfeeding -- it seems to be hormonally related. In the past couple of weeks my body said it was okay to go walk a half mile each way to the neighbor's place to buy fresh eggs and also to do part of my dance workout.

Where I see my cerebellum still faltering is in jumping down -- my body/brain can't predict as well where the ground is so I land a little hard. My craniosacral therapist suggested using a low raised surface, such as a step, and to go up and down on it several times to acquaint my brain with the height and then to jump down. I have been doing this all week and I've even been able to step up and down and to jump down some with my eyes closed even.

I'm pretty excited to still be here a year later after I first started getting balance and nausea, especially considering how the last year played out. I can't believe how well I'm feeling. My one doc said I get all the credit for my treatment seeming to work so well. My MO referred to my treatment as very non-standard in an amazed way -- she's at a research hospital. My neuro-onc can't believe how well I'm doing. It's nice to be beating the odds.

My kids? The younger one just finished kindergarten and is on the cusp of being able to read. The older one finishes third grade tomorrow and brought home a great report card. How nice that in the midst of all the nightmare of cancer and its treatment that my boys are thriving, bright, and healthy.

Me, I'm committed to helping patients whenever I can. It's a deal I made with the Higher Power when I was in the hospital last July before my brain surgery. I am here for a reason, this happened to me so I can help others.

PS - next CT and/or PET scan at the end of the month, next brain and spine scan in a month. I switched in the past month from weekly IT Herceptin (100 mg) to twice monthly and I think after the next scans we likely will switch again to every three weeks. We are doing a CSF check after each shift to make sure we are correct in our understanding of my body and cancer's response to the IT treatment.

Re: My leptomeningeal journey
 

I was wondering how you were doing. So happy for the update and to see that you and your family are doing so well. I believe that you have already helped so many of us by sharing your story. Your commitment to fight this disease and "stop at nothing" is truly evident in the way you have managed your disease. I wish you continued good health.

Re: My leptomeningeal journey
 

Tomorrow, 7/20, is the year anniversary of the discovery of my cerebellar tumor. Here's to making it one full year.

PET/CT from eyes to knees a couple weeks ago was clear again.

Shifted to IT Herceptin on the third week and we did a spinal fluid check, clear again with low protein and high glucose and no cancer cells.

I get my next brain and spine scan on Friday 7/22 so fingers crossed things are still stable. I don't think anything is going on but you never know.

Re: My leptomeningeal journey
 

Ann, that's great news. Really pleased for you.

You've been a massive help to us and many others. :)

Can I ask what your normal range for protein is? Would I be right in saying is a lesion/s had be treated by Gamma Knife the protein would still be higher?

Re: My leptomeningeal journey
 

This is great news. I am so pleased for you and your family.

And like freakzilla said: All that research you shared gave me perspective and hope. Thanks.

Re: My leptomeningeal journey
 

You are most welcome.

Re: My leptomeningeal journey
 

Thank you so much, for sharing your story and your accumulation of information! I'm getting a brain mri on Monday and feeling a little anxious about it. Doing my research, I've read all you've posted here (this thread and all the others!). I hope your scan today goes well.