- July 17, 2018 at 5:13 pm
Below, between the asterisks, is how I updated my friends and family on my situation.I'm still pretty lost on this whole thing, and to be honest, putting it all into words has really shaken me up. I'm really just wondering if I've gotten it all correct. Also my doctor seems to think that side effects rarely happen with PD-1, but I'm just not sure.
Any feed back, corrections, or knowledge would be amazing!
****As a lot of you know I had my first appointment with Dr. Richart, my medical oncologist, on Wednesday July 11th. My first impression of him is good. First, he reminds me of my pediatrician. Second, he is very confident in the explanation of my treatment. Third, he was extremely blunt with the possible side effects and the ramifications of the treatment. This is a very good sign. The people in the forum I am a part of have warned me that doctors might not be forward with me, not only because I am a woman, but also because I am young. I am very excited that this is not the case.
I feel like the best way to show everyone what I learned on the 11th, would be to present it in bullet form. Below are the notes my mom took in my words and beneath that is the treatment plan.
It is true that I'm NED, but that doesn't mean that I have NO melanoma in my body, to be perfectly honest we just don't know.
We want to decrease the chance of recurrence, especially since the melanoma had traveled to my lymph nodes.
The way to fight melanoma is actually to accelerate the immune system so that the immune system will attack the cancer.
Cancer is basically just messed up DNA.
I am BRAF positive, this means that I have a mutation in my melanoma, which means that we need to treat it differently than typical melanoma.
The treatment is called PD-1 (programed cell death). This treatment basically activates parts of the mutated cancer cells so that my immune system will register the cancer cells as cancer cells and attack them.
Risks of this treatment are many forms of auto immunity. I will list them below.
If the skin is attacked (common) itching, red blotches, blisters, and sloughing of sink may occur.
If the thyroid gland is attacked (common) I can take medicine to counter act it.
If the gut is attacked (less common) the two results can be Crohn’s or a perforated gut.
If the liver is attacked (less common) it can cause an autoimmune hepatitis and my blood may no longer clot.
If the kidneys are attacked (less common) kidney failure is possible.
If the lungs are attacked (less common) extreme asthma symptoms may occur, oxygen may be needed.
If the pituitary gland is attacked (less common) there are vague symptoms, but will be found in blood work or lab tests.
If the heart is attacked (rare) myocarditis may occur.
If the nervous system is attacked (rare) Guillain-Barre syndrome may occur.
If my body’s stress level is maxed out alopecia may occur. Alopecia is hair loss due to stress. Dr. Richart said he has never had a patient going thought this treatment experience alopecia.
I will be having treatment in an IV form every 4 weeks for 13 lunar cycles, starting Friday July 27th. It is a full day in the treatment center. I first need to have labs done, to make sure all of my levels are right, this takes about 2hrs to process. Once those results come back, and everything is right the medicine will be mixed, which takes about 1hr 30mins. During that time I am seen by Dr. Richart. After that I begin treatment which takes between 1hr to 1hr 30mins. So really, it’s going to be a long day.****
- July 17, 2018 at 6:34 pm
A whole day?! One of the benefits I've had with Pembro is that I can get to my doc's office by 2 and i'm out the door by 5 or 5:30. I guess they do labs and mixing on site and…strategically, but it seems crazy that it takes 2 hours to process the labs or 1.5 hours to mix the pd1/L1.
- July 17, 2018 at 8:27 pm
That's what Dr. Richart said. He said the meds are so expensive that they won't start mixing them until the labs are back and I am okay'd to continue treatment. He then said that mixign it also takes a long time, no real explination as to why that is though. And then the treatment itself takes between 1 and 1.5. Hopfully he was just giving me a worst case senario and I will have the shorter times.
- July 17, 2018 at 8:46 pm
Hi Becca, I like the one day approach that you will be doing, and getting to see your oncologist before treatment makes a lot of sense. I see my oncologist every 2nd Tuesday and have treatment every 2nd Friday so I have to go in twice, I do blood work on Tuesday before or after seeing my Oncologist, I have been going for 4.5 years and blood work has always been normal so my oncologist doesn't stress over it any more. Interesting notes from your meeting with oncologist, if I could comment on a couple of things. First having the braf+ mutation is common about 50% of melanoma patients are braf+ and it opens up some options for treatment called Targeted therapy ( pill form of treatment vs IV injections). Side effects do happen with Pd-1 drugs but for most patients they aren't bad, really important to study up and know what to look for, having good lines of communications very important with Oncologist. Here are two links to help you with journey, the first is from last month and it talks about the data for adjuvant nivo (Pd-1) trial called checkmate 238 in the video it also talks about a new targeted therapy approval for stage 4 patients, so now those who are at stage 4 have 3 different targeted therapy options as well as check point inhibitors like ipi/nivo or either Pd-1 drugs. The second video features side effects and the oncologist speaking is one of the leading dr. in the melanoma world. Best of luck with treatment!!!Ed https://www.medscape.com/viewarticle/898327 https://www.youtube.com/watch?v=FJzuOENBpS0
- July 18, 2018 at 12:47 am
I think you have a pretty good understanding of what your treatment plan will be. Your course will be very similar to my sons…My son just started treatment 2 months ago for Stage 3a and so far so good. Knock on wood. Only 22 more to go!!!!
He goes every 2 weeks…And I think you will find the process goes a bit quicker than you expect. Our appointments are about 2 hours…labwork and IV then wait for results. After results the drug is made by the pharmacy and administered over 30 minutes. We see the doctor once a month and that adds about an hour to the appointment. Hopefully once you are in a routine things will move pretty quickly.
The potential side effects are scary but so is melanoma. The benefits definitely outweigh the risks. We were told the 3-6 month mark in treatment is the “hot spot” so to speak for the side effects but of course anyone can have side effects at anytime during and even after treatment. You have to try to stay positive. We have made a construction paper chain like kids do for Xmas as just a lighthearted way to handle the stress of treatments…it’s just something little to make us laugh. Laughter is the best medicine. It’s not easy to go through all this and some days are easier than others. But there is life outside of this diagnosis and I try very hard to make sure my son remembers that. He’s young too and you will get through this. Your age is in your favor, please try to always remember that.
Good luck!!! I think as time goes on you will start to feel more comfortable with your treatment plan and although you will always have it in the back of your mind you will settle in to your new routine and treatment will be over before you know it. A year goes by pretty fast. And in the end it will all be worth it!!! NED is a wonderful phrase to hear!!!
Keep us posted!!
- July 18, 2018 at 3:11 am
You seem to have a good understanding of what your treatment will look like. My husband started Opdivo in May. He has a tumor in his lung, his doctor also told him side effects would be minimal and so far she was right. He is able to do all of his normal activities and has only felt a little tired. He changed his diet and is taking a high quality probiotic. I think the healthy eating helps him feel better, and it has made us all healthier! You are young and you should be able to tolerate the treatment well. We spend a whole day at MD Anderson when my husband has his treatment. Bloodwork, meet with doctor and then the infusion. I wish you the best with your treatment.
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