How to Know if You’re Getting the Best Cancer Treatment (and Why it’s Likely You’re Not)

If you’ve found this via Google, chances are you’re just like me in 2016 – you’re “terror skimming” for facts. I don’t want to lose you, so I’ll get right to it. Below are 5 absolute necessary things needed to avoid going down the wrong cancer treatment road (I’ll save my reasons why / fun time gifs for the expanded portion below). STRAP IN, HERE WE GO:

1) Get a hard copy of your pathology report. Read it.
2) Ask your oncologist to send off a copy of the pathologist report and slides for a second opinion at a larger cancer hospital.
3) Look up clinical trials to see if you’ll have better odds than the standard treatment you’re offered. This is because…
4) Hospitals cannot tell you if there’s a better treatment offered with better odds elsewhere. Legally they cannot inform you/refer you out so they’ll stick you on their standard of care even if it leads to death.
5) Chemotherapy treatment also differs from hospital to hospital. The chemo regimen most effective for your specific cancer might only be available at certain hospitals.

Above all else, those 5 things are the most important. And you’ve made it here, so you’ve read them all!

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You might’ve had questions while reading the top 5 like, “Why?” so now I’ll expand and throw in some bonuses:

1) Ask for your pathology records. Physically read the pathologist’s details. I say this from personal experience. I was told my husband’s cancer was 99% angiosarcoma, yet when I asked for pathology records nearly 3 weeks later (I’ve learned my lesson) the report said “precludes diagnosis”. They weren’t sure at all, but by this point he’d already received 2 cycles of heart toxic chemo for a cancer he never had. Get your eyes on those records!

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2) Get a second opinion from a pathologist at a major cancer hospital. You can ask your oncologist to send the biopsy slides to a more experienced pathologist at MD Anderson or Memorial Sloane Kettering. This is free to you. It’s possible they’ll come back with another opinion, like it’s a different cancer or a different staging (which can require a different treatment). If your treatment feels extreme, get a second oncologist opinion.

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NOW THAT YOU KNOW YOUR DIAGNOSIS…

Find a cancer specialist. They might have access to clinical trials for your specific cancer. Trials are free to you. On the subject of trials…

3) You can find them here: https://clinicaltrials.gov/
Trials are only offered through certain clinics and institutions so where you’re being treated possibly won’t ever even mention them. Facebook groups for certain cancers are the best place to hear about these trials and see first hand how they’re effective.

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4) Many hospitals cannot refer you out, even if they know you have better odds on a treatment that they do not carry. For example, a UC hospital will put you on chemotherapy that only has a 4% survival rate and NEVER tell you there is a trial with an over 50% survival rate offered a 5 block walk away. Cancer patients can be worth millions of dollars to hospitals and they do not want to lose you. Many people feel that by getting a second opinion that they are betraying their doctors. It’s a matter of life and death so don’t be beholden to…

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5) Even hospital to hospital, the chemotherapy regimens differ. For example, MD Anderson is the only place that offers HYPER CVAD (because they came up with it). Hyper CVAD has shown the best outcomes for non relapse remission in the cancer Hepatosplenic T Cell Lymphoma (you can find this info in medical paper case studies). This is what led my husband and I from Los Angeles to Houston. If Hyper CVAD performed the best, we’d see if insurance covered and then move to have access to it.

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6) If you’re going through a cancer treatment like a stem cell transplant, you may have to deal with many side effects that can be life threatening. These life threatening side effects often have very few treatments (like steroids). Major cancer hospitals will also have access to trial medications for those side effects that other hospitals won’t have access to, like Jakafi. Jakafi is a medication that is still in it’s trial phase for Graft vs Host disease. It saved my husband from death resulting from GVHD – which was a 90% possibility before Jakafi because the other options did not work for him. Getting access to a trial medication like Jakafi is just the first hurdle. Next is insurance. Sometimes insurance covers the cost on the trial medications, but if they don’t you can look into Prescription Partnership, a resource to help with prescription costs: https://www.pparx.org/

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7) Pyramid schemes will come out of the wood work offering you miracle cures: Go vegan! Only juice carrots for 3 months! Buy these leaves! Essential oils! No. No. No. Do I believe in supplementing treatment with these things? Sure! But even if someone miracle cured their cancer with only carrots, that is the exception and not the rule. There are too many cancers, too many that are aggressive, and our bodies and these cancers are complexly different. Please do not rely solely on “jacking your immune system” to heal you.

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Do you still feel like something isn’t right? Send me an email, Instagram DM, smoke signal and I’ll do my best to help.

GIFS ABOUT STEM CELL TRANSPLANT

WHEN FRIENDS SEE YOUR STOCK PILE OF DRUGS BUT YOU DON’T WANT TO BUM THEM OUT WITH THE REALITIES OF TRANSPLANT

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WHEN YOU’VE ONLY BEEN AWAKE FOR 3 HOURS AND THE FATIGUE HITS

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WHEN THE DOCTOR SENDS YOU HOME AFTER UPPING YOUR PREDNISONE DOSE

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WHEN SOMEONE TRIES TO SELL YOU ESSENTIAL OILS TO HEAL GRAFT VS HOST DISEASE

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WHEN YOU FIND OUT YOU’RE NOT ABSORBING AS MUCH PROTEIN AS YOU WERE PRE TRANSPLANT

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WHEN YOU GET A SURPRISE CALL ABOUT PAST DUE MEDICAL BILLS

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WHEN YOU’VE BEEN INDOORS WITH NO IMMUNE SYSTEM FOR WAY TOO MANY WEEKS STRAIGHT

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WHEN YOU’RE FEELING FINE BUT HAVE A LOW GRADE FEVER AND HAVE TO GO TO THE ER TO BE ON THE SAFE SIDE

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WHEN SOMEONE ASKS WHAT IT’S LIKE TO BE A CAREGIVER 

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WHEN YOU FIND OUT IT TAKES DAYS TO GET BIOPSY RESULTS BACK

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Less GVHD, more HGTV (Day +216)

GLOW. It’s a fantastic Netflix series I binge watched the entire first week of July. Little did I know, while I was watching lady wrestlers battling it out in the 80’s, there was a battle going on right next to me…

It was Graft versus Host. Jeff’s New Immune System versus Jeff.

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Jeff and I were totally under the impression that we were in the clear by July. The more dangerous stages of GVHD normally occur in the first 100 days and he had avoided it. Or so we thought.

GVHD occurs when immune cells identify the body as something foreign. You actually hope for a LITTLE bit of GVHD, because the cell’s ability to recognize what’s foreign is what fights the cancer. If your new immune system is too similar to your old one, it won’t know to fight the cancer.

This is why GVHD has a higher chance of occurring if your stem cells are from an unrelated donor. Jeff’s stem cells came from his sister, and they were a complete HLA match (jackpot!) but GVHD also has a higher chance of occurring when stem cells are given female to male (or vice versa). ISN’T THIS ALL EXHAUSTING? But wait, theres more:

All allogeneic stem cell transplant patients are given drugs to suppress the new immune system. They’re slowly weaned off so that the cells have time to get familiar with their new body and not attack it. Here’s a gif representation:

IN THE BEGINNING THE CELLS ARE LIKE THIS

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BUT AFTER WEANING OFF IMMUNE SUPPRESSANTS THEY CAN GET LIKE

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Jeff’s new immune system seems to have qualms with his digestive tract specifically. It’s preventing him from absorbing protein, which didn’t sound so terrible at first – big deal! We’ll go to GNC and get some Muscle Milk, solve this here and now. Except it doesn’t work like that (but I, a non intellectual, was willing to try it). The lack of protein becomes a big problem because protein begets albumin, which is what keeps water in your veins. Without albumin, things (your organs, specifically) can take a quick turn.

The first thing doctors do when they realize you have GVHD is give you a very high dose of steroids and cross their fingers and hope it works. It only works for about 30% of patients. When that doesn’t work (like it didn’t for Jeff), photopheresis is the next option. Here’s what it looks like:

The photopheresis machine has a very nonthreatening sound to it – like a Cessna during taking off.

Jeff had a new access line placed into his chest so that they could run his blood through this machine. The photopheresis machine separates the immune system cells and – for lack of a better word – sunburns them so they become less cranky. They then circulate the cells back into his body. He does this 3 times a week, for 2 hours at a time, and it takes weeks to see an effect. This is rough because sometimes the GVHD is so acute that people can’t wait weeks to see results. There has to be something better than this, right?

Enter Jakafi.

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Jakafi is the drug’s given name but I prefer to call it Jafar.

Jakafi was originally created for Polycythemia Vera, a slow growing blood disorder. The pill works by lowering your blood cell counts (it’s essentially chemo). Researchers found that it’s effective on some GVHD and so it was approved for off label use only in the last couple of years.

So we waited for the drug manufacturer to approve Jeff’s use of Jakafi, then we had to wait for insurance to approve the cost. This took a week and it often takes much longer. This is a huge issue when each pill costs around FOUR HUNDRED DOLLARS. Jeff takes 4 of these a day. A nurse dropped one on the floor yesterday and I nearly threw up.

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Jeff is on day 12 of Jakifi and it can take weeks to work. Each day in the hospital stretches into the next. I find it ironic that the only thing that gets Jeff’s mind off of everything is watching back to back episodes of HGTV shows when we’ve had our fill of acronyms this year.

Every day we risk a life threatening infection by continuing to wipe out his immune system to control the GVHD. Because of this, numerous antibiotics and antifungals are given daily via IV. This puts incredible strain on the kidneys. There has to be perfect balance, so nurses and doctors are working around the clock to keep his body running. It’s a lot like a symphony. The most expensive, anxiety inducing symphony. It’s like the symphony they hired to record the score for JAWS. And for now, all we can do is “wade”* it out.

*I’m so sorry, but not sorry for this.

 

 

Day +200

MY CURRENT LEVEL OF CASUAL EVERY TIME A NEW HEALTH ISSUE ARRISES

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Back in February I had to call 911 when Jeff was having chest pains. I went downstairs to let the EMT’s in and they thought I was the landlord because I was super chill opening the door for them like, “just bring that stretcher right in here.”