Thursday, July 30, 2015

Some good news on treatment day 4

I have now completed 4 days of injections and 2 infusions - two more combo days left! Half way there! Yesterday was a long day. I got to the hospital at 11:30 and didn't leave until about 6:15.. That's a long day at the hospital for anyone. They had a hard time starting my IV (nothing new) so that took much longer than needed and then they were behind in clinic - lots of people with cancer sadly. I had to see both my clinical oncologist and my surgical oncologist (which is also my clinical trial physician) as well as my clinical trial nurse for the injection. As I was being examined they said that the tumors feel softer and my main one that we are injecting all 5ml of drug into has shrunk 1cm. The newest spots, #3 and #4, are almost gone or untraceable. So we are only measuring the first two. Finally some good news! My oncologists are both optimistic about the treatment and pleased with my reaction thus far. After clinic I headed down to infusion and got my second infusion of Ipi while watching Cops and playing solitaire until my good friend Courtney came up and visited.
Huntsman Cancer Institute is so great. They know how to take care of their patients and spoil them. During infusion I get asked multiple times if I need anything and volunteers are so nice. I hope that when I feel better and have the time that I can volunteer up there. Their main volunteer is a charming older gentleman and when he asked if it was my first time there and I responded with it being my second, he asked if I had received my goodie bag. Nope - I got some great snacks but no goodie bag on the first one so he hurried off and got me an adorable chemo care kit. The kit included a book, a magazine, a neck pillow, an eye mask, hard candies for during treatment and soft socks. Such a small gesture that means more than people know.

I feel good today, no side effects except a bit of fatigue. I am told that I will probably feel some stomach issues come on in the next few days but for now I feel good. I tried to go to California this past weekend but I was flying on a buddy pass and the flights were too full to risk not getting back. I was pretty bummed cause I was looking forward to seeing my best friend and her extended family. I am hopefully able to get out to Cali sooner rather than later and that the side effects aren't too bad and allow me to do so. I will say that one of the hardest things about dealing with cancer is the inability to make set plans for the future because you just don't know how you will feel and if you will have the energy to do some things. I am doing soooo much better since chemo but I'm still not 100% and it could be months until then. I miss working and having things to do but have enjoyed meeting up with people for lunches and dinners and just enjoying my free time. I truly have some great friends and family.

I have three weeks off of treatment and am hoping I feel good throughout it and have some fun times ahead. I have a week long staycation planned with some good friends up at Snowbird, Utah so I'm looking forward to that. It has become a tradition and should be a lot of fun.

Connect the dots... 

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Happy my energy is coming back (and my baby fuzz hairs)

In the infusion room

Still swollen but it actually has gone down if you can believe it


Until next time, taking everything one day at a time. . .

Friday, July 24, 2015

Treatment #3 Done and New Hair!

Wednesday I had my third treatment and all went well. Last weeks injection made me super swollen and huge, this one not so much which is nice. Hopefully that doesn't mean it isn't working as good.. but we shall see. The injections haven't hurt really thanks to me not having any feeling on that part of my neck due to surgery. It has been a bit tight from the swelling and I can feel it inside my throat it was that swollen. This round isn't that bad. Next week I have my next infusion of Ipi and I am supposed to start feeling more of the side effects after that.
One fun thing that started on Monday is my hair is starting to grow back from chemo! My friend pointed it out and I told her that was a mean joke to play on me, but when I looked it really did start that day! It will be a slow process but I can see a dark hair in each follicle, it's a start! I'm excited to see what it is going to grow back in as... curly? a different color? We shall see!
I went to Bear Lake this last Monday for a night. It was a good getaway. I went with Maryann and Marty and their two boys, Ben and Jack. We camped and went to the beach. Had some food and just relaxed in a beautiful setting. I was pretty tired when I got home but it was worth it.
Today is Pioneer Day in Utah and I'm looking forward to my dads insane firework show tonight. He is a nut and has some of the biggest and scariest fireworks - it's great! I love big fireworks and it is always good to have the whole family together.
Tomorrow I am hopefully going to California to see my best friend until Tuesday. I am flying on a buddy pass so here's hoping I get on the flights! Her cousin, aunt and mom are visiting too so it will be a fun group of people. I need to go to Cali every 6 months or so for my sanity.. I am overdue. It will be good to get out before more side effects kick in.
I may have cancer but cancer doesn't have me. I will have as much fun as possible as I feel better. On to the next adventure!
 Tumor borders
 Extremely thin hair but with lots of little guys coming in - especially in the front! 
(scar on my scalp is from my first round of Melanoma in February 2009)
 Right after the injection - not too bad!
Beautiful Bear Lake, Utah

Thursday, July 16, 2015

Day Two Of Treatment Done

Yesterday was my second day of my new treatment and it went well. This past week has been good and I haven't had many side effects besides being tired and swollen at the injection sites. Inflammation at the site is a good sign as it means that white cells are swarming the area and hopefully fighting the cancer cells. When I went in yesterday there was 4 swollen areas, possible tumors but we aren't sure (two are for sure tumors). It just means that if the medicine is working that the areas are swollen because they are being destroyed! That's the hope. The main tumor almost doubled in size which is scary but like I said I'm hopeful that it is the drug working and not the tumor growing out of control. My doctors feel it is the medicine which is nice to hear.
My surgeon saw my healed scar for the first time yesterday and wasn't too happy with how it looked. As you can see in the pictures, it isn't a happy scar and he wasn't happy about it. He said once we kick this cancer to the curb that he will go in an fix it. I'm not excited for another surgery but happy to have a better scar as it is pretty crazy. We shall see how it all works out. 
I truly am so lucky to have such a great medical team at Huntsman Cancer Institute. They are invested in my fight and talk to me as a person and not a walking melanoma case. While waiting for my drug to be ready yesterday a nurse and I talked about local restaurants to try. It's the little things that mean a lot to me. 
One of my best friends has made the comment that I'm not a walking melanoma, I'm still Alexis. I just happen to be fighting melanoma. This hit me hard because for the past 7+ months that's what I have felt like - like all my worth is tied to my fight right now. I need to still focus my energy on being me and not just my fight. It is a hard thing to change focus on but it will be needed so I can start my new life after cancer. Whatever that life will be.. That part I'm still trying to figure out. 

 The four areas - my scar looks angry too..
 Before the injection of HF10
 Right after the injection - I look like I have a golf ball in my neck!! 
This morning - it's gone down a bit from right after the injection

Wednesday, July 8, 2015

First day of new treatment

I have officially finished my first day of the new treatment. It was a semi long day but not too bad. To explain the treatment I am doing again I am receiving injections of HF10 (a modified herpes simplex virus) directly into the two, yes two, tumors in my neck. The injections are supposed to alert your immune system to a problem in the tumor and in turn it will attack the melanoma. Then in turn it should act as a vaccine so if there are other melanoma cells in the body it will kill them as well. I will receive 7 injections. I am also receiving 4 infusions of Ipilimumab (Ipi) which is an immunotherapy drug approved for the treatment of melanoma.

Today I was told there is a second tumor in my neck, right next to the other one. Also, the larger tumor of the two is growing fast so I am hoping this treatment starts working soon. The injections were virtually painless and quick once the drug was ready which was a pleasant surprise. The infusion was done in a very nice setting and a good friend came and helped me pass the 1 1/2 hours it took to infuse which was great. I haven't felt any side effects besides being tired, soreness of the injection site and a slight headache. The Ipi has the potential for more severe side effects - mostly bowel issues. I'm hoping they aren't too severe and pass quickly.

I am happy to have this treatment underway and have good feelings about it. Hoping things all go as planned and this is my final treatment. Period. Here's hoping the next few months are beneficial!