Trials & Tribulations

We met with Kev’s Target Therapy Dr last Wed and it was fairly informative - most of which confirmed what we suspected, but had hoped against... She explained his situation is very complicated with competing problems. For example, he is taking high dosages of Dexamethasone to keep the brain swelling down and provide a general feeling a wellness, but it also represses the immune system and masks the symptoms of infections – hence the more recent problems; The Lovenox that was prescribed soon after he became paralyzed to prevents blood clots exacerbates the bleeding in the brain …plus a few others... Seems like all the decisions we make these days are based on “lesser of evils”.

She is pretty certain that all the problems with keeping the blood chemistry level is because the cancer has invaded his bone marrow and it can no longer produce blood effectively. This could be verified by taking a bone marrow sample, but we all decided against it. It didn’t make any sense to expose him to the risks involved when the results wouldn’t change anything - we’ll just keep up with the weekly blood checks and supplements.

We also discussed our current options. The ANG1005 study is reopened, but she was reluctant to include Kev. They have one patient, who will begin the protocol, but she’s not convinced the formulation problems are truly fixed and she didn’t want to restart Kev only to pull him off it again. So she proposed a different study – Revlimid with Valporic Acid. Revlimid is an approved target therapy drug for multiple myeloma patients and Valporic Acid (Depakote) is a standard anti-seizure drug, so the “experimental” part is combining the two. Most trials exclude patients with brain or CNS involvement, she explained, so this is the last trial available that we haven’t yet tried. She also brought up the option of Hospice, but that would require stopping treatments and Kev would like to continue with treatments as long as options exist. Even if it doesn't directly help him, what is learned from the trials may help someone else in the future. Research is the only way to stop this dreaded disease.

Next week we go in for a PET scan and if everything goes OK, he’ll start the treatment.

Technology

A new wheel chair arrived this week. It’s was custom sized for Kev – it’s narrower, has better torso support with wrap-around sides and my favorite feature - much lighter than the previous one.

Kev gets two separate antibiotics, Merrem given every eight hours and Amikacin every 24 hours, administered intravenously through his CVC port in his arm. Each dose is self-contained in a single serving package. The drug is stored in an elastic bladder with positive pressure, wrapped in a puncture resistant cover. There’s no pump and no need to even elevate to get it to flow. A simple easy-turn connection gets it started and when complete, the entire package gets thrown away. It’s set up so easy, they have me doing it. (of course it took up an entire shelf in the frig when they delivered it)

Wednesday we go back to MDA to speak with the Dr from Targeted Therapy (experimental trials). We should get the spine MRI results and discuss if they have anything to offer in ways of treatment.

Kev's Home

Kev was released this evening – my theory is that they have tired of me asking too many questions that they can’t answer and kicked him (me) out. He came home with a CVC (Central Venous Catheter) in his arm and a set of IV antibiotics along with calcium, potassium & phosphate supplements. Kev’s arms are a mess – he used to have large, blood-full veins, but after years of chemo his veins are small and hard to find. It takes multiple sticks each time they try to put in an IV and each blood draw leaves bruising. He has more track marks than a life-long drug user. Usually the nurses can not even put in the IV anymore and they have to call in the specialists from the IV team. But yesterday when they needed a new line for his platelets transfusion even the IV specialist needed help and pulled out his hip-mounted Venoscope – similar to the stud finder you use in your walls. This was a new gadget we hadn’t seen before.

Even though all the testing is complete, we don’t know what our next step is. Too many of the specialists we need to speak with were out this week so we won’t have much information until our follow up appts in the coming weeks. We did get results back from the brain MRI which showed progression of disease – this removes the option of staying with the Dasatinib & Valproic Acid treatment. And Targeted Therapy suspects that Kev will not be readmitted into the ANG1005 because of the progression also, but this remains to be confirmed with his Study Dr (out of country) and the pharmaceutical company. We have no results yet on the spine MRI. Kidney ultrasound showed no abnormalities. Chest x-rays were normal. No one seems to be able to explain why Kev’s blood chemistry is going so hay-wire and so fast. He feels great now, but of course he’s been topped off with two transfusions of red blood and platelets plus supplements of calcium, phosphates & potassium.

Tests

Kev completed both MRIs (brain and spine) without any problems Monday night and Tuesday night respectively. This morning they did an ultrasound of the kidneys. When the results are complete we’ll have discussions with all his Drs (Infectious Disease, Neurosurgery, Targeted Therapy & Melanoma) regarding the next plan. Some options presented to us have been:
- reentry into the ANG1005 protocol (they have fixed the formulation problems and it is now reopen)
- continue with Dasatinib & Valproic Acid
- full brain radiation
- surgery
- stop treatments altogether
There are likely other options, but recommendations & decisions will be contingent on results. We’ll have preliminary MRI results later today, but the Drs will likely want to speak amongst themselves before specking with us.

Reassessments

Due to the recurrent nature of these infections, his PA has decided to take a look at the bigger picture as opposed to just treating the infection like we did last time. So that means Kev will have to spend a longer time in the hospital, but will be able to get new MRIs, confer with specialists from Infectious Diseases, Neurosurgery and reengage Palliative Care.

They currently have him on three different antibiotics – Vancomycin, Meropenem, Amikacin plus fluids. White blood cell count has come down which means the antibiotics are working, but his red blood cell count has dropped too low so he’ll need to get another transfusion. Calcium, phosphates & potassium are also low so he’ll get IV boosts for those too.

Kev is comfortable, eating well and is enjoying watching the Olympics – finally some decent TV to pass the time.

unfortunate set back

We had to bring Kev back to the hospital this morning. He has been running a slight fever (38.1-38.5 C) since Tues evening. Kev was not fond of leaving the comfort of his home, but after speaking with his PA yesterday afternoon and his Dr at 10 last night, it was determined we had no other options. Symptoms were very similar to last time – tired, weak, loss of appetite and now a fever – all indicating an infection. Curiously he had just completed a 10-day cycle of antibiotics on Tuesday, but his med team wanted him on an IV antibiotic.

Edouard

The BIG excitement today is Tropical Storm Edouard. Everything is shutting down in preparations for storm hitting tomorrow. Kev’s home health called to make sure we had preparations in place and to let us know that there will be no team working tomorrow. MDA also told us they will be in “lock-down” with support available for in-patients only. NASA & Boeing closed down at noon today with no plans to reopen until Wednesday. TWC has correspondents in Galveston. The local news is recommending filling all the cars with gas and securing rations that would put a Cold War bomb shelter to shame. We sent Kelden to the market to get ice cream and chocolate syrup just in case… OK, so it does look like we will get a direct hit with ~50-70 mph winds, but if you read the fine print, the predictions are for about 4 inches of rain and about 2 feet of storm surge. (for comparison, Allison delivered 40+ inches of rain and Claudette had a 5 ft surge). Other than a lot of hot air (literally) it’s hard to figure out what the big fuss is about.

The calm before the storm