Elisa has asked me to take over writing the blog in regards to all of the medical information so that if she is feeling up to it she can feel free to just write about her feelings and thoughts and not have to play catch up with scan results, treatment and the like.
So it has been a long time since she has posted, so allow me to catch you up.
Since the last post Elisa had her steroid dosage level increased to try to deal with some of the symptoms she was having. The dose of 4mg daily seemed to have the desired effect and she became more stable on her feet. However long term use of steroids can be unsafe for cancer patients so they decided to have her wean off them slowly as she has done in the past. The plan is that they help her through a patch of bad swelling in the brain then she goes back off once it goes down. If we have learned anything through all this it is that plans rarely go the way you want. As she started to tapper off as she got down to 2mg she would have a resurgence of the balance issues, headaches, fatigue etc. So the docs decided the plan would be to keep her at 4mg until after the “slow study” was done then take her off. Plans.
The slow study is typically a 2-day test. It was very painful and failed during their first attempt so 2 days became 4 days and they had to repeat the test. Luckily the second time around was not as painful and was successful. The shunt and Omaya port were functioning; although the CT scan showed continued swelling in her brain and some possible “hardening” of the ventricles that help regulate the draining of spinal fluid.
So after the slow study Elisa tried once again to wean off of the steroids, unfortunately with the same problematic symptoms returning at 3mg. The decision was made to keep her at 4mg at this point. A new drug was added to her daily regiment to help try and balance out the immunity suppression that the steroids can cause. This takes us to October 9th when they adjust the shunt draining the fluid in her brain to try and make it a little slower in order to be able to possibly resume intrathecal chemo treatment later. On Oct. 11 during dinner Elisa had a seizure. Luckily I saw it about to happen and Courtney and Eileen were present and fast acting. Sadie was quickly taken from the table by Courtney, Eileen went to get her post seizure meds and I was able to get hold of Elisa and hold her through it. Elisa didn’t hurt herself (didn’t even bite her tongue this time) and Sadie just thought she was getting out of eating her veggies and never knew anything happened. Once she had taken her post seizure meds she was out for the night. That Sunday we were scheduled to go in and have a CT scan to look at what was going on. The scan showed continued systemic swelling in the brain (CT scans do not show tumor growth). After the scan they opened the shunt back up to allow more fluid to drain. Elisa resumed 4mg daily of the steroids and would stay on it until her scheduled MRI of the brain and spine on the Oct 23rd. During the time leading up to the MRI Elisa continued to have balance issues and headaches even at the 4mg level of steroids. The scan results would then be presented on Friday morning to the tumor board for review and input. On the day of the scan (Wednesday Oct 23rd) Dr. Jhaveri could see that there was still systemic swelling and the decision was made to increase her steroid level to 8 mg daily. A bright spot was they could also see that there were no tumors in the spine! Elisa and I would get a call on Friday afternoon from her regarding the rest of the results and the treatment plan. The news was not great. Although most of the tumors in the brain had not grown, one on the cerebellum had grown. This meant that the Gemcitabine chemo was not effective and she would not receive that drug anymore. This coming Monday she will start another chemo called Vinorelbine though her chest port along with her Herceptin. Dr. Jhaveri also said that because of the continued swelling in the brain intrathecal chemo would no longer be a treatment option. In fact there are not a lot of further treatment options. Dr. Jhaveri continues to search for any clinical trails that Elisa may qualify for but thus far there are none. Elisa will also be staying in the 8mg dose for now. It has taken a couple of days for the steroids to start to be effective, but it has been two days now that Elisa has not had any balance issues, and we are hopeful that this dose level will be effective.
So that brings us to today. Today she felt good, and we hope the same for tomorrow and that is how we are moving forward. I, all of us that know and love Elisa are so grateful for all of the prayers, positive energy and support that you continue to show her. If I may, I would like to impose upon you all to say a little prayer, send a little positive energy, hold her in your thoughts and smile. We are far from done fighting, but do need all the help we can get. Thank you all so much.
Warmly,
Nathan
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