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 ❤️

Those Pesky Lymph Nodes

Well let’s see if I still remember how to do this…

When I last left you in April mom had just had a scan and it was clear minus some lymph nodes and she was starting a new PARP inhibitor drug.  Since then her CA125 had continued to go up (see chart below) while on the new drug.  However, her CT scan in August was clear.

That brings us to today.  She has tumor activity in two lymph nodes.  I haven’t seen the scan yet so I can only go off what her oncologist told us. Which is that one lymph node grew by 50% from 8mm and the other went from one point something centimeters to 2.4cm and got longer.  Because of this he no longer thinks these lymph nodes are stable and that we’ve finally figured out why the CA125 keeps going up.  The cancer is in those pesky lymph nodes.

Fear not!  We have a plan and her doctor said this isn’t even close to worst case scenario.  

Plan A: Get into a clinical trial. We won’t know what this entails until we know what trial she qualifies for.

Plan B: If she can’t get into a clinical trial she will go back to the chemo routine she was last on in June 2017.

Reason for opting for a clinical trial first is the longer she stays off chemo, he hopes the longer he can keep her from becoming chemo resistant.

As always thank you all for your love and prayers.  It always has and always will mean so very much to us! 

Good News

My head is still spinning so you’ll have to forgive me if some of this post doesn’t make sense.

NO EVIDENCE OF METASTATIC DISEASE…mom’s scan looked good. Some inflamed lymph nodes but there weren’t any masses.

So what does this mean.  Her cancer is recurring on a chemical level.  Meaning that she has cancer cells that are growing and producing the CA125 protein but they have not grown large enough to be seen on a CT scan.  That means it’s very early and that we have a better chance at killing these suckers before they grow into masses.

So the plan is she will start a different PARP inhibitor drug to stop the cancer in its tracks.  She will have monthly CA125 blood draws and will have a CT scan in about 3 months unless her CA125 skyrockets while on the drug or she begins experiencing cancer like symptoms.

Thank you all so so much for your love, support & prayers throughout all of this!

It’s Not Working

I’m searching my brain for the words I want to say. And they’re not there. So let’s just start with some numbers and a recap.

Recap & Results |February 16 Mom’s CA125 was up to 62 (we want below 35). Mom then started her PARP inhibitor drug the last week of February. This is the same drug she was on in October and went off of December 4th because of the side effects and the fact that her CA125 was in normal range in December (it was at 31). She had a follow up blood draw April 6th to make sure the PARP inhibitor was working. We got the results of that blood draw this morning and her CA125 is now at 140.

The Plan | So she talked to her scheduling nurse and she talked to the doctor and here is the game plan. CT scan on April 19. Appointment with oncologist April 24th. Double dose of chemo April 25th. Yup we are back to that chemo life.

Thoughts | My head is just kind of spinning and my brain is just trying to process the information.

Thank you to everyone that thinks of us or prays for us or reaches out. Your love and prayers really mean so much to us.

An Anxious Mind

I would like to preface this post by saying my physical health is fine. I just wanted to share a look into the mind of someone with general anxiety disorder.

Anxiety can be an interesting thing. It can cripple you and make you question yourself. It can make you question others. And it also forces you to make choices in the case of this incident.

I had been experiencing some pain. The thought of calling the doctor made me feel nervous. I don’t like calling places. I don’t like the idea of being dramatic because of some pain. I also don’t like the idea of letting something go until it intensifies when I could’ve done something about it. If you can’t tell already I overanalyze everything.

I called. I went. I got tests done. I felt at peace. The peace of knowing I conquered one step and I did my part to be proactive about my health.

Waiting for results is never fun but I felt good that I took the step and went. After I went I began questioning myself. Was I being stupid for going? Am I being dramatic? Will people think that I think I have ovarian cancer just because my mom does? I’m not sure who I thought these people were considering the only people that knew about this were my immediate family and they all encouraged me to go. Eventually I chilled out.

A week went by and the office called. I had a small cyst and we were going to make sure it went away on its own and do a follow up in 3 months. I felt good, I felt calm. Then I decided to read my ultrasound report…I am an investigator by nature and that report contained a lot of language that I had to look up. And even when I looked it up it wasn’t EXACTLY the language the report used so it wasn’t much help. Also there was a nodule…no one mentioned a nodule. Basically I began to drive myself crazy.

My mom suggested I call the office to get a better understanding from the doctor. Sure great I’ll call…minus one little thing…I didn’t want to call. She’s a doctor and I’m sure she’s busy and I’m sure I’m just being silly. But I wasn’t sure that I was being silly. So I had a choice. I had to weigh the anxiety. Was the idea of calling worse than googling cysts and nodules for the next 3 month?

So I called and I rambled and she told me more about my cyst and that it didn’t look concerning. And that we will look at it again in 2-3 months and go from there. And I felt better. I felt slightly annoying for bothering her. But I only have one life and I don’t want anxiety stand in my way of getting all the information I need to feel confident moving forward.

Go With Your Gut

On December 4th Mom stopped taking her PARP inhibitor drug due to side effects and her CA125 had returned to a normal range. The deal was if she had a clear scan the first week of January she would go into surveillance mode.

Her scan was in fact clear and she went into surveillance mode. What surveillance mode entailed was CA125 blood draws every 2 months or sooner if she didn’t feel well. It also meant she wouldn’t be taking any medication for the cancer because it appeared to be under control.

Mom didn’t like the idea of waiting two months. She has high grade serous carcinoma which means it grows fast. She wanted to stay ahead of the game. So she went with her gut and got the blood draw at around a month. On January 27 her CA125 went from 31 (on Dec 18) to 36. Because it went up they sent her for another blood draw on February 16th. We got the results today and her CA125 is at 62.

They will do a complete workup on Friday and she will resume taking her PARP inhibitor. We are going to remain hopeful until we are told we have run out of options. And we are definitely not there yet. So the rollercoaster continues and we get stronger with every turn along the way.