Brief Update Regarding My Page, Care and Treatment

First, I updated my treatment page. It may be helpful to review if you want to share what I am on and each chemotherapy drug and supplement and surgery and radiation treatment have been hyperlinked to what it is and explained why I am on it.

Next is that we are moving towards a solid plan. 

Turns out having Brain Metastasis is better than the tumor that has been living in my lung lining for 3.5yrs. The Brain Tumor I had was larger than any cancer I have had (even from 2010). It was 5cm in diameter and has 10 under 1mm tumors in the parietal and temporal lobe. I have started to recollect a lack of emotional connection, loss of memory, acting on auto pilot, and not having good decision making for about two weeks. I was purely functioning on muscle memory, working out and doing bare minimal mental work. 

How did I learn this? I re-read emails the week before the hospital with my doctor talking of a HEADACHE and also making plans to start chemotherapy at Cornell and coordinate with Sloan on November 14 and 23 to collect my t-cells for an immunotherapy. I have no recollection of that conversation or making plans. I also wrote nothing down on a calendar nor told Kyle that I was doing this. Me not writing and then talking about the same crap to Kyle (sorry dude) like 20x in a row is unlike me. I am pretty verbal and he even said I was quiet, withdrawn and mooping around a lot. I knew my markers were up and I needed to go on chemo, so the emotional part made sense given what we were dealing with. I also was driving and exercising with this and thats dangerous. I am super glad my temporal and parietal lobe are back. Those areas do things we honestly don't focus on. I am just glad my brain bounced back. I am pretty lucky.

Going forward my doctor is sticking with the same Chemotherapy we have been discussing for two months. She is suspecting the brain tumor is a new beast and is possibly like a BRCA1/2 gene. I am getting thrown on Carboplatin and Gemzar, which is a drug a lot of women with these cancers respond to. Carboplatin increases fatigue and lowers red cells and platelets. Gemzar lowers red cells and platelets and also I cannot drink alcohol on it as it goes right through my liver. I don't drink anyways, so I honestly do not care for that anyway. I NEED my liver before a beer. Just get me a cake people no wine, I will drive you all. 

Next new piece is a quiet large neurosurgical, radiological and psychology team because well now my brain is in the piece. My new radiologist is awesome. I do love my old external beam doctor, Dr Butzbach - who is so kind, warm funny and honest, but I need more focused care with a radiologist who also specializes in breast cancer and brain tumors and new clinical trials. Turns out my new doctor's team trained my old radiologist for my bones, which explains why my medical oncologist in NYC kept me with her in NJ for easier care. 

So yesterday we meet the radiology team - Dr. Sylvia Formenti at Cornell. I fell in love with them. Honestly, we left feeling great.  I was nervous during the CT and she like held my hand during my brain CT. Clearly an awesome, smart, determined funny kind and super involved woman in ways to cure breast cancer with radiation, chemo and immunotherapies. Her and my medical oncologist - Dr Linda Vahdat at Cornell - are really close. I can totally see why as they are both smart, kind funny and have a true desire to find a cure for this. Not many people can say that about doctors (it is sad but horribly true - you can see in my blog, I have been there many a times). She works at Cornell but also is involved nationally for this type of care, worked on the medications for AIDS and then switched to oncology clearly after the AIDS medication came out in the 90s. 

Dr Formenti and I reviewed many types of brain radiation and a few studies at Sloan Kettering she has been involved in regarding immunotherapy and brain mets. She is very determined to not let this close doors to any types of trials for me. She thinks ahead. I need that. She decided on 5 sessions of cyber knife therapy. Cyber Knife therapy is a radiation that uses small beams of radiation to the exact tumor. I would be doing this treatment while I start chemo on the 29th as they work well together to get the chemotherapy into the blood brain barrier. 

We do not have a date of start yet, but I am assuming it will be the 28 to start cyber knife every other day and add chemotherapy on the 29th. At this time I honestly cannot be alone given both therapies tank your red cells, white and platelets. Kyle and I will be asking for people to walk me in NYC to care and also hang out with me at home. My doctors also ordered this to keep me safe. I can walk etc, but no driving or being alone for 4 more weeks. If you want to come by a day, shoot me a text. If you want to be my treatment buddy, come along for a day. All are welcome. 

We also will need help with food. We are good until this Friday, but even take out brought or a small meal would help. I am still working up to my old energy and lately anything more than 30min of standing has been exhausting. If you want to send food ask me, Kyle or one of my parents. I would appreciate the help so Kyle can go back to work and I can focus on healing and getting my butt back to driving, working out and being my old self again.

Next steps are clearer, but not settled.

11/28/16 - Meet new Neurosurgeon, Dr. Ramnikrisna, who also does neurosurgery , gamma knife therapies and invasive types of surgical radiation to my head. We are setting me up with him for the future and have him also follow me every two months with an MRI of my brain. He also will be working with my medical and radiation oncologist as a wholistic part of my care. 

Sloan Kettering - TCELL TRIAL - We are still moving forward with collecting my t-cells for future tcell therapy when this current crisis settles. T-Cells need to be collected at the most opportune time for obvious reasons - THEY NEED TO BE STRONG! I am calling Sloan today to discuss when I should come in and to help my team at Cornell to work with them... both my doctors want me in this trial. The window for the T-Cell collection has to be 1mo post surgery, 14days post radiation, 7days off of any steroid drugs, and 7 days off of chemo. With how this looks, I probably will be getting the collection in January. I am still on steroids, I cannot delay radiation and I need to heal from brain surgery and start chemotherapy ASAP. To do this trial, its one week off of chemo with a brain MRI that has been stable 4 weeks. I may get the transfusion in late winter if my brain behaves. The t-cell therapy is specific to my lung tumor, since that thing is the most stubborn beast, this trial is a great option for me. So pray my brain responds to radiation & I respond well to the new chemotherapy.

  There is also another brain and breast doctor at Sloan - Dr Beal they wanted to connect me with that uses immunotherapy via radiation (shoot the immunotherapy into my head) for recurrent brain metastasis. 

Genetics and Pathology - Not back yet. Pathology comes next week. We are also doing another Genetic Panel. My team has done one on every cancer excised from me to create a big map of every DNA problem my cancer has and to keep my cancer open for new trials in immunotherapy. 

What I was worried about the most:

   Last but not least... why I am not doing whole brain radiation. I know this cancer can get bad and a lot of women die from something called Lepo Mets - fluid in our brain and spine. Lepo mets is not a death sentence, as I have a girlfriend who had it for YEARS and never did whole brain until recently - I think its been 8yrs actually. It is a very rare and can happen once someone has brain metastasis. If its not treated right, clinical trials do close and we are left without a paddle. Thats sad, but its so serious you do need more intense care. WBR and intrathelial chemotherapy ports are used to target our whole brain and spine lining & are highly affective. Regardless all I knew was that whole brain is highly affective on that type of disease and I knew I would want to keep that in play just in case I needed it... you can only do whole brain once, so I would rather save the big if things ever get so big.

   My team reviewed all radiations including whole brain and why it is good and bad. Then we discussed with my team my desire to hold off until its needed and we are on board. The FDA still says whole brain is the best, but my team feels cyber knife is better given my goals and how young I am & also my genuine concern of needing it for lepo mets ever (see i am just planning ahead).

   I have seen 3 women I love more than the world die from Lepo and Brain Mets...There is not one day I do not miss my grandmothers humor and strength, not one day I do not miss calling my aunt kerry to talk about TV and cancer and jokes, and my friend Sheryl who was so smart and funny & a fellow social worker. Brain mets seriously has been a big part of my cancer journey and it does impact my grief, sadness and just depression that cancer is evil and it killed 3 women I admired and considered my best friends. I am seriously sad still and traumatized. I am allowed to miss them. I am lucky I have my family, my uncle, and Sheryl's parents for support. They are part of my home team. 

   Luckily, my team took that emotional in play and did explain why its done and how it does work in some patients. They did explain that they also are working now with my local psychiatric team to help feel OK with having brain mets and losing so many to cancer. My radiation oncologist called my psychiatrist right in front of me too coordinate care with the new anxiety and recurrent PTSD from the cancer in my life and family. 

Thanks all and love you bunches.