PET Scan Results- the Adventure continues!

I got THE call.  The call you don't want after your PET scan. No news is good news. There is news.

The first thought.

DAMN. 

Second thought. 

GDMFCSSOB.

I cut to the chase- How bad is it?  

It's not horrible but we have progression and we need to discuss options. I can tell you right now what I'll recommend. 

Yes Please. 

So what we know... the short story is I have some new growth and we have to switch up our chemo to get the cancer to knock off it's nonsense. Metastatic Breast Cancer is a chasing game. We treat, we hope it works, we rescan and hope it's still working. Most chemos for mets last for a short time before the crazy cancer misbehaves and works it's way out of time-out. Our job is to be attentive and keep it in time out for as long as possible. My cancer needs to be put back in time out. 

15 months ago I had lots of round spots in my lungs, bones(femur, iliac, spine, arm). In March- most of those spots had disappeared(major yay!)- except for a shadow on my femur. That is called complete response- all those misbehaving cancer patches- had the chemo and went into time out. So we continued because it worked. 

My cough is back, which is a daily reminder that I am not as healthy as I pretend to be. I do feel pretty ok. Which I am really grateful for. Although there is still activity in my lungs of cancer cells- the old spots are pretty stable. That is good news. Unfortunately there is a new spot in my hilum(middle of the chest- part of the lungs) that's bigger than I'd like, a bunch of new bone spots-in new locations- and the right femur spot of old is pretty angry. On top of that there is a little adrenal spot- which adds yet another organ affected- not good- but also reminds me of Lily kayda's adrenocortical carcinoma and freaks me out. Breast cancer can metastasize to the adrenals- but it could also be new tumor. So that is something we will have to watch carefully and evaluate. For now we treat it like a met- because it is small. 

When new spots grow- there has to be a change in plan. If what you are on is working- there should be no new spots. Mind you the stress of the past month's brain mets- physically and emotionally- probably are weighing heavily on my body. But we have options. We hoped for stable- but we deal with what we have. 

We need to throw some more at the hormoniness of these tumors- they are hormone positive meaning they love estrogen and progesterone -which women's bodies make. I got rid of the organs this summer- but the amazing body has many ways to do things- like creating estrogen from other molecules. There are pills that I can take daily that will stop this conversion- to make sure we have less estrogen feeding the cancer cells. Of course the down side to this is some crummy side effects and bone weakness- which is already a problem due to the mets. But looking at alternatives- you have to get rid of the biggest threats. So I will be starting an Aromatase Inhibitor(AI) called Arimidex.  It's a pretty standard hormonal treatment for breast cancer after the ovaries are shut off(post menopausal).  SO plus side- no extra trips for infusions with this med. 

Since I have new bone issues and will be adding the AI- I keep taking the Xgeva- which helps my bones hold on to calcium and prevent breaks from the weak spots. That is a shot and will still be every 3 weeks. 

Then we have to address the new growths. We will be trying a chemo called Kadcyla(TDM-1- which Phil has taken to calling Touchdown Molecule 1). It is a drug we seriously considered doing first- but  recommended that we keep it in our back pocket and give the other chemo a chance. It's a buying time proposition and we try and eek out each step. We got 15 months out of my cocktail- I would have liked a bit more but am so grateful for this past year- ups and downs and seeing new milestones for my kids and the together time and reconnecting with family and friends. There was a time years ago where there were not these options. I hope for my children's sake and all other fighters out there- there will be even more down the road. 

Kadcyla is essentially Herceptin- with the chemo attached to it that finds the Her2 receptors and latches on to the cancer cells. It is very directed chemo and they have seen good results. It will probably have a similar side effect profile to what I was on before- but we will see.  My doc called it the iPhone 7 of herceptin- kinda wished he had shot for iPhone 8- the 6 was released much too soon. But it will be an infusion every 3 weeks- very similar to what we have been doing. The nurse ordered it today- so we will wait to see if it comes in on time for me to keep on my Monday schedule. 

So the take away is that we have continued hurdles- but I remember how bad it felt to see all those tumors light up over a year ago and here we are today.  We take it a day at a time and live our best life and try to find as much love, comfort and fun along the way. I am very thankful for all the positive energy, love, words, juju, prayers and offers.  It truly makes a difference, for all of us here. I also want to say- if you feel like calling -call- or text or drop a message or a card.  Please don't be afraid to  reach out. I know it's hard to know the right thing to say- because sometimes there isn't anything that can help- but I can tell you how much it means to just even hear I'm thinking about you- and it gives me a chance to respond and let you know that I'm thinking about you too. 

And a HUGE HUGE Thank you for the Team Mallory Support- my friend Gina was kind enough to start the fund up again for a 3rd SALE!  If you are interested in grabbing this fantastically designed Tee by Hope Friedman - it will be up until February 8. There's a new ladies fit too! We've been using the proceeds to have the housecleaned every 2 weeks and tip the Valet guys at Tripler generously. Oh the difference it makes!! I still am completely in awe that we have a t-shirt- but adore seeing pictures of all of our friends sporting Team Mallory. I'm hoping to get to tell you about the gamma knife experience soon- I'm still waiting on my superpower to show up...as my good friend Trish says- I wish my super power wasn't sprouting tumors! 

TEAM Mallory Until FEB. 8

Chemo Cocktails

Weeks ago Phil and I, our genetic counselor and an oncologist walked into a bar. Actually, we sat in a tiny exam room, huddled around the paper covered table while the doctor drew flow charts and game plans.  Not football, not Sorry or Risk, but the chemo games.

I have a tough time with a lot of the premises of cancer treatments. Most cancer treatments are like an amazing race- they try to kill off cancer cells faster than normal cells. Good in theory- but leaves you with a lot of unpleasant side effects- both short and long term. Many cancer treatments purposely cause damage to cells(radiation is a good example) which then creates a chain reaction of events to get the body to recognize and get rid of the bad cells.  Unfortunately a lot of these need the tumor suppressing super power of p53 that us mutants seem to lack- hence many chemos and radiation are unreliable for us. Sometimes they even make tumors grow faster in mutants. So not only do I need to consider the great big gamble of which chemo- I also have to take into consideration how it works.

So there we are- saddled up to the paper lined exam table bar- trying to chart a course to get me through this predicament. I am not your standard patient. I don't follow the one size fits all approach and they sure as heck don't fit me. So most women who have metastatic breast cancer have tried other chemo cocktails. I chose against chemo last time. It was recommended. BUT my logic was this- there are certain limits to the amount of chemo a body can handle.  I told former oncologist that I didn't doubt that we'd have future opportunities to chemo-ify me- my gut said not right now. We had clean margins, and no lymph nodes were positive - so I wanted to operate on the assumption that we got it all. That is a risk you take with cancer. You can't see the cells- they could be floating around. I weighed my options and I wasn't ready to do the chemo drill without a great big glittery flag of a reason. I now have that reason. And that reason still didn't make the decision any easier.

New Oncologist was given the brief on me- I make the calls. He doesn't even offer his opinion until asked- which I do a lot. His answers are honest and frank. That's how I roll. Two weeks after our cancer cocktail discussion, he calls to check on me. Not trying to rush me- but he knows I'm getting ready to leave town and wanted to make sure we had a plan in place- you know to make sure the right meds were ordered and ready.  I asked him to call an NIH doc for me to get another opinion. Actually a mutant sister absolutely insisted and knowing that I was going to be seeing her in a week's time and she would make good on threats- I needed to follow up. Never mind the calls I put in to family and friend docs as well as a few connections I've made over the years. I had every mutant I trust pooling experiences and research into a nice neat package and they even took an official vote on which treatment they would choose for me. All answers were the same. Bases were covered. The decision was taking shape. 

There are a few approaches to treating metastatic breast cancer. I know too much. I researched metastatic breast cancer when I was first diagnosed . I calculated the risk and effectiveness of treatments.The numbers suck. You can't look at those numbers. They suck. So day after day- I would try to find the magic answer- in some paper- any research article- obscure or recent that would be the best for me. I couldn't find it. I began to envy the patients who just show up and follow the protocol given by their doctor. But I also know that the way the system works is geared to the masses. My blood pressure would sky rocket, making me breathe harder and that would stir up the glitter wich was counter productive. I would steal time to take walks- I always think better when I walk. I downloaded some meditation cds one of my other favorite mutants sent. So as I walked and Bernie Siegal guided my thoughts- he also made some really good points. The one I needed to hear was- a seed that is paved over does not stop to consult scientific literature on survival probability of seeds that are paved over. It merely finds a way to survive. It was reminiscent of the period after Lily's diagnosis-me attached to the computer searching for answers that didn't exist until a good friend said- stop looking for the answer and go be a mom.  So there was my answer. I had to believe I was going to survive and that would guide the path to survival. The answer was definitely a cocktail.  Unfortunately Sam Adams Octoberfest wasn't going to fix this one.

Once I committed to that- I had to focus on the best way to achieving that goal. And somehow that puts me back at square one.  So I called and emailed and had a few heart to hearts with favorite mutants. And between our collective hearts and minds- I knew that I had exhausted the information- I had everything I needed- I just needed to make the decision. There was no epiphany, it ended up being that call from new oncologist that made me commit. I hadn't made a decision. I just had a lot of information. I could write a dissertation on the whats and hows. Ultimately what it came down to was a gut decision when asked a simple question by a doc who paid attention and followed up.

I have hormone and Her2 positive cancer.  Cancer feeds off of hormones like estrogen and progesterone. Some cancers are more sensitive to these hormones and if they are "positive" - hormone therapies that reduce these hormones can help stop the cancer. The Her2 protein causes cells to grow faster and some cancer cells are positive for too many Her2 receptors. This growth can be stalled by a monoclonal antibody called Herceptin. The Herceptin binds to the Her2 receptors and they can't send their signal. Recently a new drug called Pertuzumab came on the scene- it also binds to the Her2 receptors- just in a different place. Pertuzumab is pretty new- but other than cardiac effects- it and Herceptin are monoclonal antibodies- they bind to specific places. The good news in cancer therapy is that they bind to the cancer cells specifically- unlike traditional chemos that affect all cells. These monoclonal antibodies appeal to me because they are specific. Any damage to normal cells increases the risk of new cancers growing and getting by my faulty p53. I decided against using herceptin last year because sometimes it only works for a short while- I didn't want to burn it's usefullness before I really was sure I needed it.

The toughest part of my decision was the taxanes. Taxanes are a group of chemo drugs routinely used for breast cancer. They work with or without p53 function and don't seem to piss mutant p53 off like other chemos do sometimes. There are 3 different taxane drugs- each slightly different. My big question was which one works the best. Data is mixed. Everything just seems to depend on the person. 2 of the taxanes can only get into cells because they are mixed in a solvent. Those of you out there who worry about vaccines and the "extras" that might cause autism or other negative side effects can appreciate this. Many of the allergic reactions to these drugs are actually to the solvents- not the drug itself. Side effects are due to the drug. Years ago a compound found in the pacific yew tree bark proved to be effective in stopping cells from reproducing by stabilizing it's microtubules- cells can't live like that forever and these cells eventually die. Since cancer cells are rapidly dividing- this is one of the drugs that uses the theory kill as much of the bad as you can, before the good. The side effects happen when this drug affects other rapidly dividing cells- such as hair and nails. The mouth and GI tract also have rapidly dividing cells- so mouth sores- stomach upset- hair loss are the big side effects. I know there have been a lot of improvements in side effect management and hair grows back. The solvents bothered me. And then I read another mutants blog and she had reacted really poorly to one taxane and was put on another that used albumin(something in your blood) to get the taxane into the cells instead of solvents. I wondered why the medical community always starts at the most toxic first. I asked my oncologist about how effective it was comparatively and he said all taxanes had similar efficacy. So why couldn't we start there? Because protocol, trials- all that direct cancer care is systematic- it's like voting along party lines- that's just how it's done. Once I established he was game to vote for me and not along party lines- I knew we had a plan. 

I agreed to Herceptin,Pertuzumab and Abraxane. We briefly discussed stopping my estrogen production- this can be done by shots(yet more chemicals into the system) or by removing ovaries. I will take my ovaries out- they've outlived their purpose and right now just help feed cancer cells.The tricky part is timing it with treatments and potential decreased immunity. You don't want to be healing from surgery with a compromised system.Right now the shark closest to the boat is the cancer and we have to try and stun it. And like that we have devised a specialty cocktail just for me. It has been used in this combination before- it's just a bit non standard. Like me. And it's something I put my belief in and the best way to affect whether or not something works is to believe in it.