Tag Archives: HEATT

And Then a Texan Called

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I haven’t spoken much about my HEATT team except to say they are fantastic. They are varied individuals, compatible and unified in their avid curiosity and commitment to how heat treatments can stall disease. The “father” of the trajectory I am on, HEATT, is Roger, a Texan complete with cowboy hat, home on a ranch, and Marlboro man face. He has been working on heat therapies for decades and flies into San Jose for every surgery and, like all the team members, is very available. (They give out their personal cell numbers, answer the phone and seem happy you called!)

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Roger checks in on me regularly. When he read my latest blog post he called from the airport to say, “Whoa, your situation is not that dire from our perspective.” He went on to explain stuff that I cannot easily re-explain but the swelling of my cancer may be its response as it prepares to die. HEATT is working to make changes at the molecular level and that takes time.

I feel a glimmer of hope

I start chemotherapy next Wednesday and I am quite ready – gemzar and avistan, both drugs I have had before. I wish I could start today and have some immediate pain reduction. My kick off palliative care appointment isn’t until the end of the month. But I cherish a small permission to wonder if maybe my toes will step into 2017 and beyond.

If nothing else, I do provide a good story of suspense.

Love, Marcy

P.S. Keep those helpful ideas coming!

 

Marcy, the lab rat, checks in.

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Marcy, the lab rat, checks in.

This is a brief check in as my vision still slows my typing but my vision gets better by the day as does the rest of me but not with out a lot of help!

Here is what happened these last few weeks as my sister, husband and medical team repetitively help me piece together. We arrived in San Jose January 25 for a barrage of tests the next day. We also got to meet with many of the team members – all excellent. Wednesday the 28th early, early we arrived at the Operating Room. The five-hour surgery went well from what I understand. Afterwards, as mandated, I was wheeled to the ICU. It was supposed to be a maximum 24-hour stay or until I woke up. But I didn’t wake up until late day five, despite all their tricks.

Five days of this!

Five days of this!

I left ICU for the hospital then rehab.

In rehab I was helped to reboot. To return to the Marcy I was before surgery and five plus days of NO movement. In rehab, I also had a most unscheduled brain seizure – panic, 911 called, EMTS arrived and promptly treated me and relocated me to the emergency room where my clothes were sheared off, more stabilization, then a return to ICU. I had one more seizure during this stabilization phase.

Apparently, I am the first patient in which treatment seemed to trigger PRES (Posterior Reversible Encephalopathy Syndrome) and Eclampsia:-Review. Of course I am patient #5 receiving treatment # 11.

My current status is that I stay appreciative of being home, the tremendous host support we received in San Jose, at the 24-hour care from my husband and friends, two trips from my sister in the midwest in two weeks

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and horrified at my current physical status (sleep 18 hours/day due to anti-seizure meds.) I have jettisoned my walker for my cane but I do everything S L O W L Y.

What is next? Good question. I do not know, a reality I hate. I do know that today I start physical therapy. I should be back in San Jose today getting tests to prep me for a second surgery this Wednesday, treatment two. I withdrew from the trial, though, when it was obvious I would be disqualified for treatment two. This allows me the opportunity to re-apply. (And get accepted!)

My big conclusion from the last month? Dying is easy. This living and recovering is very, very hard. Thank you for all the support in the latter!

love,

Marcy, the lab rat

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Getting Cooked in 2015

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Medical plans for 2015 are in place.

The last week of January I will become the only person you know (admit it) that is getting cooked in an effort to stunt her disease. I will get cooked six times as part of this Phase One clinical trial – every 28 days. The cooking, technically known as heating, happens in an operating room with me under general anesthesia for the four plus hours. During the procedure my blood is continuously removed and returned (much like dialysis) as it is heated to the magical 107.6 degrees Fahrenheit temperature. The first hour gets the blood to the required temperature, the last hour cools the blood back down to normal. In the main part of the procedure the blood functions like a radiator to heat my entire body to the 107.6.

107.6 F

107.6 F

There is nothing very new about the idea of heating the cancer to kill it off. It’s been an international effort with Germany and Japan also spending significant time on the concept. The challenge has stayed getting the body hot enough to destroy cancer with out destroying major organs – a tough balance. Clearly, a human cannot survive a two-four hour fever of 107.6.

So how do I intend to survive? Well, my team of doctors believes, and has convinced the FDA, that they have evolved the equipment needed to protect my organs while heating me up. While I will be within the first handful of patients using this equipment, there is a longer history to calm me.

A doctor in Galveston, Texas, Dr Roger Vertrees, designed the initial two generations of  equipment first using it on 40 AIDS patients in the nineties and then 10 very advanced lung cancer patients in 2004. Both were well-documented, credible trials. Dr Lilja, my new doctor in San Jose tracked this work, travelled down to watch and when the Galveston Hurricane images

wiped out their lab suggested they relocate to San Jose where the third and current generation of the equipment is setting sail. Now Dr. Vertrees travels to San Jose for every surgery and is the “founding father” of the working team in 2015.

I enjoyed meeting the San Jose HEATT team. They are run out of a small, no frills private practice under the lead of Dr Lilja, a long time (but still quite young) gyn/oncologist. The hospital they work with, Good Sam, is nearby and also pretty plain and well regarded. Dr Lilja seems to be a bit of a visionary much like Drs Bruckner and Hirshfeld – willing to live a more simple life in the pursuit of cancer breakthroughs.

Dr. Lilja has long explored heated chemo (known as HIPEC) for his patients. HIPEC is hard to tolerate, not relevant for heavily metastatic people like me and serves as no magic wand motivating his look beyond towards HEATT.

I like the dedication, teamwork and vision, which is good because I am putting my life and hopes for a future in their hands.

Expect updates from Marcy the lab rat.images-4