Scan Results & A New Plan

Mom had a CT scan last Thursday. Today she and dad met with her oncologist to go over her results and a new treatment plan.

Her CA125 is now up to 744 (it was at 482 on 3/18/2019). The lymph nodes that were enlarged on her scan in February have grown by 30%. And she has irregular thickening along the medial wall of her cecum (the beginning of the large intestine) because of the cancer.

Because the cancer still progressed while she was receiving treatment they have in fact determined that her cancer is now resistant to platinum based chemotherapy drugs.

Tomorrow she will have an echocardiogram and if all looks good she will begin the chemotherapy drug Doxil. The echocardiogram is necessary because Doxil can interfere with the pumping of the heart and they want to make sure hers in working properly before treatment.

If all checks out she will have Doxil once a month for 4 months and then another CT scan.

As always thank you all for the love and prayers and support. It means so much to us! 💜

We Need A New Plan

There are variety of directions I considered taking this post. I’ve been sitting in the same spot for an hour and a half drinking my strawberry acai refresher from Starbucks trying to think of something.

I could go deep and talk about the suckfest that was Wednesday. I could give you the facts and the game plan. I could try and be funny or lighthearted or try to be super positive.

So maybe I’ll just try real. I don’t know how I’m feeling or what to think. Wednesday was the same as it’s been for a while. CA125 keeps going up and due to a combination of things mom didn’t have chemo on Wednesday. This treatment plan just isn’t cutting it. It’s begun to feel pointless for her to feel like garbage and stay in the hospital when the chemo isn’t doing what it’s supposed to be doing. So after consulting with nurses and the oncologist she was discharged and went home.

She (and we) get the next two weeks to regroup and get ready for a new plan. On April 4th she will have a CT scan and on April 8th we will go over that and talk about what chemotherapy to try next.

It’s a lot and it’s the same thing over and over again which is both numbing and frustrating. It also feels surreal because she looks good (which we are incredibly thankful for…I’m not complaining…just trying to convey my emotions). They’re coming back with these numbers and scans that indicate cancer growth and she doesn’t look sick. She looks like her. So it’s hard to wrap your brain around.

Thank you all for your love and support and prayers and kind words. It means so much to us. 💜

CT Results

The cancer is throughout the lymph nodes in her abdominal cavity but it hasn’t grown much so they are considering it stable. The lymph nodes grew by 0.2cm on average.  So while they are growing they are growing at a super slow rate.  So that’s why they are classifying it as stable. In order to keep it stable she will have to be on chemo indefinitely. They will stick with the same drug she is on and are adding another chemotherapy drug next cycle.  They will stick with this protocol until either the lymph nodes grow larger by 30% or she has a severe allergic reaction. He let us know that this isn’t going away with treatment and that the goal now is to keep it small and stable.

So while it isn’t the best news its certainly not the worst.  We would have liked to have heard,  “These things are shrinking and you should be in remission in no time”, absolutely! But we also didn’t hear, “It’s growing out of control and there’s nothing we can do”.  So ya it’s a bummer, but it could’ve been worse.  So that’s what were rolling with.

 

**Thank you all for taking the time to read the blog, pray for us, reach out to us and surround us with so much love and support.  It truly means more than words can express.  You are all wonderful and we appreciate every single one of you!**

Some Thoughts

My mind is somewhere else and it probably will be this entire week. It’s torn between what my mom’s test results will be and remembering to get eggs to make cupcakes for Julian’s birthday.

I’ve developed a coping mechanism over the past couple years. I’m not really sure if it’s actually a coping mechanism or just an attempt at avoidance.

When my mom was first diagnosed my fears were always at the front of my mind. I would sit on the bathroom floor every night and just cry. Eventually this subsided.

These days I’m almost able to stick my fears in a box and focus on what we have. What we have been blessed with and not what we stand to lose. I’m sure this has come with time, therapy and medication. But on weeks like this I allow myself to open the box. I allow myself to feel my fears.

February 14th she has her scan. And once that scan is complete we know at any moment her nurse could call and give us some crappy news. The 18th she meets with her oncologist so we are guaranteed to know something by then.

Maybe chemo has started working. Maybe it hasn’t. Maybe the next drug they try will slow or destroy the cancer. There are a lot of maybes. But there is one thing I KNOW for sure…regardless of the news we receive we will deal with it how we always have with tears, humor and with love and support from the people around us.

Is chemo working?

Today we got some not so fun news or as we like to put it “we are getting to the scary part of our programming, folks”. Mom’s CA125 is up to 400. Blahhh. So either the chemo she received January 9th isn’t working OR it just hadn’t had time to go to work on the cancer.

So what’s the plan. Chemotherapy. Right now as I type she is being hospitalized and receiving her chemo at a very slow rate over the course of about 24hours in hopes to avoid an allergic reaction.

Within the next 2-3 weeks she will have another blood draw and a CT scan. The hope is that her CA125 will be down in the 300s (or lower). If that is the case she will continue with this chemo protocol of hospitalization every 3 weeks. If it hasn’t gone down there will be a change in chemotherapy drug.

So now that I’ve got the details out of the way I’ve gotta give props to my mom. We didn’t get the news we were hoping for but we laughed a lot today. We made her oncology team laugh. Not sure if they were laughing with us or at us! I don’t know what the future holds but today we laughed through a tough situation and that’s gotta count for something. 💜

Out with the Carbo, In with the Oxal

We all knew hypersensivity to carboplatin was a possibility. After 6 cycles of carboplatin they administer it to you over the course of 3 hours instead of 30 minutes so they can 1. try to prevent a reaction and 2. stop it as quickly as possible if you develop a reaction. Prior to this cycle mom had received 12 cycles of carboplatin. Every time she received it we anxiously awaited the news of whether or not her body was still tolerating it. Well on November 14, 2018 (her first chemo cycle since June 2017). Her body decided it was no longer a fan of Carbo. She developed a rash on her left hand and her throat felt scratchy. They stopped the drug immediately and gave her Benadryl and steroids to combat the reaction. So just like that the drug we had trusted to abolish her cancer like it did before was no longer an option.

After speaking with her doctor they have decided her new cocktail of choice would be Oxaliplatin with Gemzar. The biggest side effect with the oxaliplatin is cold neuropathy. It’s an extreme sensitivity to the cold which can last 5-7 days. The cold will cause numbness because her nerves can stop functioning properly when exposed to the cold. It also can effect her breathing if she is exposed to cold air or even a cold drink. She will have to take precautions in order to prevent the neuropathy like wearing gloves if she gets something out of the refrigerator.

This new cocktail begins tomorrow (December 11). I’d be lying if I said it didn’t make me nervous. Anytime she starts a new treatment it’s scary because you just don’t know how it will effect her.

*UPDATE chemo for tomorrow has been canceled because it has not been approved by insurance yet

Chemo shmeemo

“Chemo shmeemo. Chemo is no fun because you can’t hug people. Especially old people like Mimi” – Julian

This was Julian’s reaction when I told him Mimi (my mom) starts chemo this Wednesday (Nov 14). They tried to get her into a clinical trial but she didn’t fit the criteria. There was a PARP inhibitor trial but the prior two PARPs she was on didn’t work so chemo was the way to go.

After 3 cycles (9 weeks) of chemo she will have a CT scan. So with accounting for delays she will most likely have a scan at the end of January early February. This chemo cocktail caused a lot of platelet issues last time around. So I’m just sort of accounting for delays due to that.

All the love and support is so deeply appreciated. We are very blessed to have so many wonderful people thinking of us and praying for us.

Thank you all so very much ❤️