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This page is where you can find the latest updates on what is going on with Taylor.

Latest journal entry

Posted 2017-10-30T13:41:54Z

Previous Updates from Care Pages

Oncology Visit - 10/2 - Posted Oct 6, 2017 1:50pm

Taylor had a visit with the oncologist last Monday before her infusion of Avastin. Good news is her CEA has come down to 15. That tells us that the chemo is working! She is still experiencing side effects from the chemo pills so she has started a two weeks on/one week off schedule in order to get some relief. We know from the last scan that the haziness in her lungs is just about gone and the oncologist did a chest x-ray this week that showed a reduction in the fluid around her lungs. We see the lung doctor next week but I am not expecting anything major to come from that visit.


Oncologist Visit - Posted Sep 18, 2017 10:05am

Taylor had a PET scan and a visit with the oncologist last week. The PET scan showed a reduction in the cancer in her lymph nodes and her CEA level is holding steady at 21. Two places in her abdomen did light up on the scan but they were not able to tell whether those spots are cancer or just inflammation. For now she will continue the oral chemo and will get a baseline MRI next month so that we can stop doing the PET scans. He did mention that the cloudiness in her lungs looks to be about gone but the fluid remains. We see the lung doctor again next month and will discuss possibly draining the fluid if it is still there.


Lung Doctor Visit - Posted Aug 18, 2017 10:34am

Taylor had a CT scan of her lungs, a pulmonary function test and a follow up visit with the pulmonary doctor yesterday. The CT scan showed a small improvement in the cloudiness of her lungs but the fluid around her lungs has gotten worse. That was not what we expected to hear given she has been feeling so much better.

The doctor can go in via a needle through her back and drain the fluid. Taylor has opted to wait and if she starts feeling worse she will have the fluid drained. She will also been weaning off the steroids over the next couple of months. We go back for a follow up visit in October.

She has an Avastan infusion next Tuesday and then I believe we have a break for a couple of weeks in appointments.


Oncology Visit - Posted Aug 15, 2017 11:44am

Taylor had a follow up visit with the oncologist yesterday. The good news is that her CEA level has leveled off. It had been doubling every couple of weeks over the past couple of months which was very concerning. Now that she has started taking the chemo pills daily her CEA appears to be holding steady which is good as it means her cancer is not growing. The doctor is not sure how the steroids she is taking are impacting the CEA number but there may be a chance that the number goes down once she stops taking them. The plan for now is to continue taking the chemo pills daily and receiving Avastan treatments via IV every 3 weeks. She will have another CEA test and a scan in mid-September and we will reassess where we are at that time.

We did discuss the National Institute of Health clinical trial with her doctor. He feels like that is a good trial for her, however she has two issues right now that would keep her from qualifying. The first issue is that she is on steroids which would disqualify her. We visit the lung doctor on Thursday and she may start weaning her off of the steroids since the inflammation in her lungs appears to be much improved. The second issue is that she does not have "measurable disease". You need to have tumors or impacted lymph nodes of a certain size in order to qualify. Her impacted lymph nodes are not large enough to meet the minimum size requirements. For right now, we will keep this option in our back pocket.

As mentioned above, we have a follow up appointment with the pulmonary doctor on Thursday. I will post an update after that visit.


Updates - Posted Aug 7, 2017 11:16am

Hi everyone. I found this site and thought we might try it with the hope that it allows me to keep everyone updated with what is going on with Taylor. Facebook updates just seem too public but calling and texting everyone, especially after we receive bad news can just be to overwhelming. Maybe this can be the happy medium between the two.

As everyone knows by now, we learned about 6 weeks ago that the cancer was back and now situated in two or three lymph nodes in her lungs. She started taking low dose chemo pills each day with the hope that we can stop the cancer from growing any further. The last few blood tests have shown her cancer markers continue to grow. That can mean one of two things; either the pills aren't working and the cancer is still growing or the cancer is dying and releasing the marker as it dies. We go back today for another appointment with the oncologist and we will get another reading on where her cancer marker is. If it has grown I expect him to want to add some additional drugs to her current regime.

The oncologist continues to talk about using these drugs as a bridge to a clinical trial. The goal is to keep the cancer from growing any further while we find a clinical trial that can offer her more hope than the temporary reprieve that we have gotten with chemo. I have identified the two or three clinical trials that I think have shown the most promise. My first choice is a trial that is being conducted at the National Institute of Health in Bethesda, Maryland. In that trial, they take a piece of the cancerous tumor and identify certain markers. They then take the patients own immune cells and modify them so that they see the markers and attack them. This is a very small trial and comes with very severe side effects. In order to shut the immune system down they give the patient very potent chemo which causes their hair to fall out. They then inject the modified immune cells back into the patient which causes another round of severe side effects. The therapy is brutal but the results have been very promising with some patients being cancer free for more than a year. We are asking Taylor's oncologist to see if she would qualify for this trial. If she does not qualify we would then move on to one of the other trials which are more drug based.

Unrelated to the cancer she also had some sort of inflammation in her lungs that was making it difficult for her to breath. She has been on steroids for the inflammation and they have really started helping. She feels much better, has more energy and the cough that accompanied the inflammation is now gone. We visit the pulmonary (lung) doctor on 4/17 and we will see what she decides about further treatment for the inflammation.

I will post again after our next oncologist appointment and let everyone know the latest.


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