MOMMY:
Another day of chemo. I'm happy to say Luis did pretty well with the treatment. The worst part was the insertion and removal of the port needle. Even that wasn't as bad as expected thanks to the help of our new friend Emla, a numbing cream applied an hour before our appointment. |
| A 5-hr visit for bloodwork and chemotherapy |
The oncologist gave us some reassuring news: Luis is right on track with his chemo. His sore tummies, occasional vomiting, endless appetite, and explosive outbursts are all 'normal' and expected with his treatment.
Next Friday, June 16 will be Day 29 of his chemo. That will mark the end of the Induction phase. We expect Luis to receive more chemo through his port, another chemo drug, methotrexate, in the spine, and potentially another bone marrow sample. I'm waiting for an appointment to be scheduled for a CT scan next week also. That should give us more confirmation that the treatment is working.
The best news the doctor gave us is that we should be able to return to Windsor after chemo on Friday. The week between Day 29 and Day 36 will be a drug-free vacation at our house. I can't wait to settle into a routine with the kids. After nearly a month of being in London, I think we all miss our own beds and food. On the following Friday, Day 36, we have to return to London for the start of the next phase of treatment, Consolidation. The doctor didn't confirm the frequency of our upcoming visits, although weekly visits may be required.
The clinical trial
A big decision Daddy and I have to make is whether or not to allow Luis to participate in a clinical trial. If he participates, he would receive one of two streams of treatment.- Standard treatment: This is the treatment he would receive even if he didn't participate in the trial.
- Intensified Methotrexate, Nelarabine and Augmented BFM Therapy: Patients with T-Cell Non-Hodgekins Lymphoma (T-NHL) like Luis are usually treated with the same type of chemotherapy treatment used for the related T-cell acute lymphoblastic leukemia (T-ALL). The second possible treatment stream includes the same medications as the standard treatment but at higher levels and includes an additional drug, nelarabine. This treatment is currently used for T-ALL patients.
If we agree to participate in the trial, we will randomly be assigned to one of the treatment streams, either 1 or 2. It's a big decision.
PROS:
- Luis' current treatment is possible through years of other kids on clinical trials. Information gained from the study can be used to help other patients in the future. We have an opportunity to pay it forward.
- Luis would be closely monitored and the doctors may choose to take him out of the study in order to make the best decisions for him based on his response to the treatment.
- We can pull out of the trial at any time with no effect on his future care.
CONS:
- We don't know if we would be assigned the standard treatment or the intensified treatment.
- The unknown: the 2nd treatment could be better, worse or the same as the standard treatment at treating the cancer. With the 2nd treatment, there could also be side effects additional to the standard treatment.
- More tests (and medicine if we get the 2nd treatment stream) than if we didn't participate in the trial. His medical information would be collected for 10 years after entering the study.
Must feel wonderful to get to go home.
ReplyDeleteTo me it looks like Luis' face has gotten rounder. An effect of the treatment?
Tough decision (I voted), but at least the doctors would also remove him if its not the best treatment for him.
Always in my prayers.
I have volunteered for drug trials (though ended up not participating) and frequently look at new treatments for things.
Yes, the round face (and belly) is due to overeating, which is due to the steroids. For lunch today, he had a hotdog, a slice of pizza, carrots, edamame, spaghetti, and a toast with cream cheese. Not the best food choices but we have a hard time fighting his cravings. If we can squeeze a couple vegetables in, I'm happy.
ReplyDeleteYou are still as cute as ever. It's nice to finally see you eat. It was a battle getting Luis to eat at school.
DeleteMs. Rosalba
Hi Jen, this is Chris Pepper, you responded to my daughter's blog, Emily Pepper. She does have the same type Lymphoma as Luis, you were right. Emily is done with treatment and I can't wait until you are all there too.
ReplyDeleteWow you have a tough decision. I would never tell you what to do but here are my thoughts, and I've been through all of this.
While our kids have the same disease I'm not sure what protocol he is currently on so take this for what it's worth. i could probably write a book here I'll try to keep it shorter.
1. The standard treatment works. My daughter is proof and she was treated at Stanford Medical center where there are a lot of kids in treatment and to me the current protocol just seems to work.
2. What I would as the doctor and I'm sure you already have had this discussion, but what are the side effects of Nelarabine. Emily's protocol included intensifyed methotrexate, and while we got through it, it's really tough with long hospital stays that you don't know when will end, it's all determined by blood levels and each consecutive dose ends up with an even longer in patient hosptial stay with mouth and anal sores (sorry everyone for the details) that are a nightmare. but sadly there isnt' an easy way through any of this.
3. Does the new protocol shorten his therapy? I know boys with T-cell usually have to be in therapy a year longer than girls, would the new protocol change that? If it does shorten therapy without a downside I'd seriously consider it. You will be so tired of hosptializations for neutropenia by the end, it's hard for me to fathom 3 years compared to 2.
So were it me, and I realize I have limited info here, I like the old protocol because I know it works to a high level of success, BUT since Luis is male, if it were to shorten treatment I'd consider the new one.
Also rememeber when you are in a study, they have to do double blood draws usually everytime, once for Luis, and once for the study.
I'm sorry you are having to deal with these kinds of issues, stay strong !
Chris
Chris, thank you so much for your response. I'm happy to hear that your daughter has survived this disease and is doing well. I appreciate your comments, knowing that they come from experience. For Luis' protocol, we were told treatment would be about 2 years.
DeleteI would be honoured if you would check in on our blog from time to time to give us some tidbits from your experience. I haven't met anyone who has had a child with this cancer yet. It would mean a lot to me. Thanks.