Its been a little bit since I posted an update. At least I think it has. I try and update people when they ask I don't always remember who I Have updated who I haven't updated and who wants to be updated. So here we are.
Let's start back a couple of months. Sorry if this is repetitive.
Progression was found after suspicion from my lumbar puncture in March, after my vp shunt and eventually after a Lumbar MRI.
The official progression is in my spinal fluid/on my nerve endings. Also known as LMD.
I had several treatment options. At first we increased my Tagrisso which I found helped with my back pain immediately.
I opted to wait to start treatment until after April vacation (I wanted to enjoy the time with the boys). But utimately it was decided that I should at least start my chemo regimen prior to vacation.
The tuesday before easter i had my first chemo infusion. The plan is to a combo Carboplatin/Pemetrexed for four session and then I will drop the Pemetrexed (I think). This one will continue on until I have progression.
During my second cycle we tried to add Amivantmab. I knew going into this that the chances of having a reaction to it was very high. This drug is given over a two cycle the first week because of the reaction rate. It is then given weekly for 4 weeks and then once every two weeks (in my case my doctor was going to link it with my carbo/pem cycle so it would have been every 21 days). I immediately had a reaction when they added it to my cycle. I was given meds to stop the reaction. They slowed the amount that I was given and I got it over 30 mins. Because I did well over the those 30 mins we tried again at "full" speed/strength. But again immediately I had a reaction. This time I was given an epi injection to stop the reaction. And sent to the er for observation.
The following week we were hoping to try again, but when I went back my heart rate was incredibly high as well as my blood pressure. So after a bunch of tests to rule out a blood clot and anything serious we opted to halt it. A referal was made to the cardiologist prior to getting the infusion again.
This week I met with the cardiologist and most tests were ordered. Again it was recommended that we halt the ami until we have the full picture back.
Unfortunately, I didn't bounce back from my second treatment as quickly as I did my first. I am two weeks out of the treatment and still struggling with weakness.
The past week or so I noticed that I was having back pain. Initially my doctor and I made the joint decision to hold my tagrisso because I was going to be starting the Amivintmab. When I went to the doctors this week for my weekly check in I mentioned it and it was immediately decided that I wouldn't wait/hold my tagrisso any longer. I started back up it again this week. My back is feeling better (my neck still hurts, my legs are still weak but I am hopeful I can reverse this). I also learned that my lumbar MRI is getting moved up a month.
So other small updates. Because of the exhaustion and the weakness that I am experiencing I made the difficult decision to start using a wheelchair when I out and about. The kids have struggled with it. Trent told me it was different and weird to him. That it makes him sad because I never needed one before. Baelor doesn't understand what it means or the implications. There are changes around the house as well. My sisters have been visiting more and helping around the house. I haven't been driving because of the weakness and exhaustion I am hopeful that I will be okay to start driving this weekend or even the beginning of next week. I know it is taxing on my mom because she has been driving me around constantly.
One things that I am struggling with is the amount of hair that is falling out. I have always had a full head of hair-my hair loss isn't noticeable. But it has made me question what I want to do. I have talked to my doctors about it and if I can look into getting a wig. I've also thought about cutting it off into a pixie cut. But as Bryan reminds me I cut my hair short and instantly regret it. Talking with Baelor he wants me to keep my hair long. So for the time being thats what I will do.
I go back for my next chemo infusion on Tuesday. I am finally starting to feel better-my nerves are starting to creep up about how I am going to handle it. The following week I go for my Lumbar MRI. The anxiety is creeping in about what they will or wont find.
But for the weekend, I will enjoy the time with my boys. I will enjoy the final days of baseball. I will do somethings around the help to prep for the following weekend.
So thats my update. If you made it this far thank you! Thank you for the support that our friends and family have given us. We couldn't do this crazy journey without you all!
Comments
Post a Comment