TILS Video 18 Day 18

So this is it, I get to go home tomorrow!!!!! It was just like all of a sudden at the end of this week everything turned around. White cells up, vision great, rash going and I am just a peeling snake now. Diarrhea very rarely, throat much better, appetite increasing, drinking increasing. So they got to take some IV medication away, which can also help with reducing diarrhea. And I have to attribute at least some of it to getting a couple great, okay at least good nights of sleep. What a difference it makes. I officially got taken off of fluids now. I still have my line in but they may give me a fluid bolus before leaving tomorrow. The big issues is drinking enough when I get home. There is a struggle with the taste buds issue, drinking and eating. But once I get home I think it will be much easier as I am slowly finding things are easy for me to take in. And now that my mouth isn’t in as much pain, like I can actually brush my teeth again, variety will be better too.

So I am very pleased to be busting out, especially during a flu outbreak, it couldn’t be more important than now. I will have a followup appointment soon. But most important, is to just go home, rest and recovery. Its will be a slow process, but I have had to do it before. And at least spring is here now, instead of heading into winter. So everyone out there, fingers crossed that my TILS cells are doing their job in there, and this was worth something. I know it was worth something, regardless of results I don’t regret going through it at all.

Video

https://www.youtube.com/watch?v=SAb_iWY_53Y&feature=youtu.be

TILS Video 17 Day 17

So the last few days here have been busy and confusing. We have unfortunately all be put under isolation due to a few positive cases on the floor for the flu. This is clearly not the floor you need a flu outbreak on, when no one has an immune system. Its been turned over to public health. Fortunately for me I tested negative, but we all still have to take a 1/2 dose Tamiflu. And anyone coming in has to be gowned, gloved and masked. So lastnight I got my tamiflu and I threw up 4 times. Since the tamiflu is the only new thing, I am only assume it was that, so when I get it tonight we will due some premedication first to see if that helps. I got to take some clonazepam to help me sleep and omg I got about 12hrs (broken) but it was awesome! I am so very very over tired, I can’ t wait to sleep at home. My isolation stuff has been lifted today which is awesome! I can leave my room and guests and nurses don’t have to gown up.

Now for some great news, I was expected to go home later next week, due to white blood cell count and diarrhea and fevers. Well as of today I haven’t had a fever in about 48 hours, and all of the sudden my white blood cells just jumped up crazy high. My platelets are stabilizing and increasing on their own, and very important to me is that my hemoblogbin is stabilizing. And if it keeps stabilizing that is going to mean so much to me. As you all know, considering how often I have to go for transfusions for blood in my bowls. My rash is so much better, really its just like the end of a sun burn, with all the peeling happening. So I have only had some diarrhea, and two imodium in the last 24 hours, and they are going to remove an antibiotic which can help. So with every thing heading in the right direction, I will now likely get to go home this weekend! So wonderful. I am not going to lie, its scary at the same time after being here for 3 weeks and getting such great care, and always getting to know your vitals without guessing, its comforting. But will be so nice to go home.

Challenges I still face are the diarrhea, eating ( I have no tastes buds and everything is gross), its slowly getting better. Throat is slightly sore but way better! Severe weakness, will take a lot of rehab, as well as weight loss, I am down to 104 right now. I knew after all the fluid got pulled from my tissues we would see what was really happening. This is definitely the least I have ever weighed, but slowly, with small snacks it will start to come back. If anyone who has lost their taste buds from chemo before has any suggestion that would be helpful, although I know we are all very different.

So despite of how effective my treatment was or is, my main focus now is just mending myself. My health and recovery is very important. To aid in the TILS or to prepare for another treatment. Either way I need to get back on my feet. I will keep you all posted about me going home! I have a CT april 23. I still have some discomfort on the left hand side of my abdomen, but doctors have agreed the area feels different.

TILS Video 17 Day 17 – longer video than usual, had to play catch up

https://www.youtube.com/watch?v=qfugZmOcpeI&feature=youtu.be

TILS 16 Day 14 & 15

So the video in this is from Day 14, but writing for Day 14 and 15.

Day 14 was very rough for me. I was extremely tired from lack of sleep, and the huge battle going in my body to get my counts back up, while chemo tries to take them down. The day was so busy with a blood transfusion, platelet transfusion, plus all my other stuff. And for 2 hours going upstairs for an eye examination. I just felt so weak that the exam was torture. The good news is that nothing is physically wrong with my eyes and likely the blurriness is from chemo, which I had before with chemo. I just rested for the remainder of the day and went to sleep earlier and actually got a better sleep. I slept through many of the checks I think.

Today Day 15, has been better, my eyes are no longer blurry, and my counts are all going up. So I got my last injection of neupogen which is awesome as it is one of the things that can be causing fever and diarrhea. Basically flu like symptoms, plus some bone pain. So now its a matter of purely waiting for every thing to get better. I need my counts to go up, my fevers to stop and my diarrhea to stop. I will very likely still be here all weekend. The hope was to be gone by saturday but I will need more time than that. As well unfortunately today, someone tested positive for the flu, and anyone with a fever in the last 48 hours is put in isolation, what a pain! Mostly for guests and nurses, but I can’t leave either. But I should have my results back tonight, and they better be negative! The rash has run its course, oh its still 100% there, head to toe, but all the pain and major itch associated with it has pretty much gone. Now its a lot of moisturising and peeling!

TILS 16th Video Day 14

https://www.youtube.com/watch?v=_rcA7RSs2nA

TILS 15 Day 13

So I had the weekend off from IL2, and I think we are going to just leave it out at this point and just let my body recover. As from IL2 and Neupogen if you can get the side effect I am getting it. I am still on neupogen until my white blood cells reach a certain level. I just got blurred vision tonight which I blurrily read can happen with neupogen. I have a lot of edema again in my limbs and face, so likely more diuretic tomorrow. Throat is still sore, but working on getting more calories in slowly as that is a huge issue. My rash is about as bad as it can get I think, and just needs to run its course. As the earlier areas are peeling. So I am just resting and trying to get some calories in. Not pleased I get to add blurred vision to my list now though!

Video

https://www.youtube.com/watch?v=Eia6A66Fe2s&feature=youtu.be

TILS 14 Day 11

So I missed day 10, I was super sleepy and took advantage of that! Today is saturday and I get a break from il2. I am head to toe in rash, and itchy. It flares at certain times. I got blood and platelets again today. Still on the neupogen, but because no IL2 there was no feeding of non-coated tylenol every 4 hours, which is harsh when you have a sore throat. I have a very sore throat, which will get better when my white cells start to go back up. I have still had very bad and bloody diarrhea if I am not living on imodium. So we do have some question whether I will continue with IL2 next week or not. Or just let my body recover. Since this protocol is still in trial, there is a lot of unknown and questioning whether the second week does more harm than good for some. But we shall see.

Video

https://www.youtube.com/watch?v=MMCRQvY933Q&feature=youtu.be

TILS 13 Day 9

So I think the chemo is really starting to hit me hard, very rough and weak day today, and of course up at night now. So I have such a bad rash all over my body, that may have started with who knows what, probably the chemo is and just worsened by the IL2. But we ruled out that its an antibiotic I am getting so that is good. Just have to keep trucking through. I got another blood transfusion today, that makes 4 total. As well I got a platelet transfusion. I got another IL2 and the neupogen. I got some of the shake and bakes tonight. I found it was in time with another drug I am getting that causes vasodilation, making me even colder, and my rash gives out so much heat like a really bad sun burn. Fortunately I am allowed Benadryl now ever 4 hours so thats been helpful today.

The diarrhea has settled at little today, as I am on a clear liquid diet only at the moment, to rest my gut. I have been getting bloody diarrhea, we think and hope that because I have cancer linning my bowls its the dead melanoma cells getting kicked out. Which would be awesome. My throat has been really sore and causing some gagging and vomiting, that is from the chemo. One my white cells start to go back up they will help to heal my throat.

https://www.youtube.com/watch?v=N4RV0w5TWlg&feature=youtu.be

TILS 10 Day 6

So today was the big day! I got my cell back for the TILS infusion. There was 100 Billion cells. So from here on out its just staying healthy to get my IL2 injections. So after the infusion which was only about 30 minutes, I took a nap and woke up with some fluid in my lungs though. So I think just due to that extra infusion today, plus all my IV fluids which are high for me it was just too much. So I had some breathing issues and got nasal lines. Also starting coughing a lot. Then some vomiting started. And then the major chills set it. So the cells are grown in IL2, so there is IL2 in the cells that were infused. And a reaction to that. Its expected to IL2, and helps them gauge dosing. So I was so cold and shaking, I couldn’t get enough blankets on, which is fine, painfully cold. But it was expected. Unfortunately at the same time they are trying to mess around with me due to my breathing issues. So they gave me lasix and I kept having to pee and just wanted to lay under my 10 blankets. Plus I had to go to Xray for the 2nd time today, while I was freezing, but I put my winter coat on, which seemed to stop the shakes. Eventually they passed, the fever kicked in and I got hot. And now all balanced out and had dinner at least. So it was all doable. I am still unfortunately dealing with a nasty rash all over my neck, back and torso, as there is some descrepnce as to what is causing it, but tonight its the worst it has been. I am getting a bit of benadryl but its not working yet. Anyways, all and all, a doable day!

Video

TILS10 , Day 6

https://www.youtube.com/watch?v=Mx3TI4J1zH8&feature=youtu.be

TILS 9 Day 5

So today was an easy day, I had my final chemo at 5am, and another unit of blood transfusion. My white cells have dropped so we are on track to do the TILS infusion tomorrow! YAH! Very exciting. Last night I was having some bad fevers and rash over my neck and torso, thinking it was from the blood transfusion, although that has never happened before. Turns out I am allergic likely to one of the antibiotics that they are using as prevention of a rare pnemonia. Its a cheap form of the drug, but this can be an unfortunate side effects, so I got pulled off that and they have to order me the more expensive one that comes as an inhalent. I am starting to get a little mucositis in my mouth = nastiness; but cleaning and doing the best I can do manage it properly so it doesn’t get worse. So my drug regimen for oral pills has really been ramped up now in prep for IL2, including Tylenol every 4 hours, plus all this other stuff. They cover you for EVERYTHING! So tomorrow marks the day when things are going to get harder, as stuff has been pretty easy so far. The delayed chemo effects will kick in, IL2 will do its damage, Neopogen shots will do their damage too. I am sure appetite is really going to struggle but I will just keep doing the best I can. So this is my last blog before and IL2 injection. I am expecting a lot of down hill from here, so please be ready for that. But I will still work to keep you posted as best I can, or at least take some video and post at a later date.

I am really trying to get my video into a click link on this page, but its being a huge pain. But anyways, copy and paste!!!

TILS 9 Day 5

https://www.youtube.com/watch?v=CAFBJNAwz8M&feature=youtu.be