Back at KU in Unit 42, my home from home.

Well, I flew home on Saturday just in time for James's 11th Birthday on Monday. I had a meeting with Dr Abdallah Monday at 4pm and was admitted Tuesday morning. To start an intense salvage chemo for 4 days. It's called (VRD)PACE, each letter is a different chemo so quite a cocktail. Here's a pic of Kristy, me and my 'chemo pole'.

And a couple more from my picc line being put in in IR this morning.

How many screens do they need..

And placing the picc

So all going well I should be finished chemo by Saturday at 10pm and go home Sunday morning. As usual I can't wait to be unhooked from all the tubes so I can have a normal shower 😳.
We are also working on 3 options for my Plan B, as (VRD)PACE is only a bridge and can only last a couple of months. When I have a better idea of which one we end up with I'll write an update.
I hope everyone is doing well, take care.

Leaving Seattle

Well, where do I start? Sadly Seattle and my CAR T cell treatment didn’t go as planned. In fact it didn’t go at all. I failed to meet the criteria for the trial. They did a number of bone marrow biopsies but they didn’t show the required amount of cancer in my bone marrow. And unfortunately, the trial won't take into consideration the tumors that I have growing or the cancer in my lymph nodes.

In preparation for this treatment I have been off any other treatment (such as chemo) for over 2 months so my cancer has been progressing. Knowing I need to start a new treatment asap I flew home Saturday evening and I have a meeting with Dr Abdallah today (Monday). I think my options will depend on bloodwork telling us how I’m doing, but I will know more this evening and will post again once we have a definite plan. 

This is all so disappointing on so many levels, not just because my best option is gone, but also because I’ve had to cancel my remaining care givers which causes problems with flight, etc which I just feel terrible about. The fundraising that we did to help offset the cost of the trial is also weighing very heavy on my mind. There is still a chance of qualifying for the trial in Seattle (or elsewhere) at a later date, so we are planning to put the money into a separate bank account for when we need it. My priority at the moment is to find a treatment and stay alive. After that I’ll sort out all the other details. 

Sorry I don’t have better news. 

CAR T cell Immunotherapy clinical trial

Well, its been a while since I've posted and lots has happened of course. But lets look forward. I'm resurrecting this blog because I'm leaving town again and want to keep friends and family up to date as much as I can. My latest chemo stopped working which is my eighth line of treatment, there aren't really any decent chemo options left. So back in July I was evaluated for a CAR T cell treatment in Seattle, at the Seattle Cancer Care Alliance (SCCA). I leave on Tuesday for Seattle, all going well I will leave there November 19th in remission. That's Plan A, and I am focusing on that until I'm told otherwise.
My time at the SCCA will involve lots of tests followed by my T cells being retrieved from my blood. They will then spend 3-4 weeks in a lab being engineered to fight Myeloma. After which they are infused back into my body and start eradicating the cancer on a cellular level, which is pretty amazing. 35 days after I get my cells back all going well I'll be allowed to go home.
CAR T cell therapy has good statistics for people like me who have failed lots of different treatments. They are getting 83% of patients like me into full remission which is an amazing amount given 8 failed treatments. So the hope is that my disease doesn't go too crazy, and my kidneys hold out until I get my cancer fighting T cells back.
I plan to write updates as I go along.
I want to say thank you to all the people who have got me to here and all the people who are making the trip and stay in Seattle possible. Hopefully I can get to Nov 19th in one piece and return home in remission.

The 7 Year Itch

October 6, 2016:

Never a dull moment here in the Delaney house hold. Charlotte has been walking for a few months now and is 15 months. Due to recent birthdays we also have a 10 and an 8 year old in the house! Doesn't time fly!

I was just rereading my last post...after taking out my port due to infection and treating me for a staph infection they put another port in the opposite side of my chest. Sadly it got infected after only 9 days (and was never even used!) and I was hospitalized for a few days. Got another PICC line in the other arm and administered IV antibiotics every 8 hours for 30 days. After this Dr McGuirk advised we didn't put anymore ports in for fear of another serious infection. So controlling my GVHD needed to be done another way. A new drug called Jakafi which was designed for another use had been showing good results in controlling GVHD in some patients. So we tried it and it's doing a great job so far. So I transitioned off of prednisone and stopped photopheresis and now take two pills a day and my GVHD is under control.
Recently I finished 6 months of Lovenox shots and they looked at my legs for any blockages. I still have a DVT in one leg and a partial blockage in the other. So I will keep using a blood thinner but will change to Xarelto which is a pill twice a day, much easier than two shots a day.

August 11th 2017:

So yes, a crazy amount of time has passed since I last wrote (but failed to post), so I will have to list all that has happened since I last blogged.

1. I now have persistent DVT's in both legs and they aren't going anywhere so I'm on blood thinners for the rest of my life - Xarelto, once a day.

2. My KLC (or cancer marker) stopped creeping up and started moving a little faster - 54 was as high as it got. I had started using the new wonder drug, Daratumumab, but the slow and then fast rise of the KLC showed it was failing. After this drug there wasn't really a better option...I was getting to the end of options. At the same time I was developing plasmacytomas, which are solid tumors that happen "rarely" in myeloma. I'd had one on my right shoulder which was treated with radiation (my first ever radiation) a little while back but a painful tumor in my left chest and another painless one in my spine prompted me to have more radiation on both sites. Before I had the spine radiated, I was referred to a spine surgeon because the tumor had taken over most of a vertebrae. He consulted with my radiation oncologist and they decided that the tumor was too big to radiate without an intervention first, because it could cause the spine to collapse once the tumor dissolved. So I underwent what they called the STAR procedure and a kyphoplasty, which basically means that they did internal radiation with a  "zapper" and then squirted cement into it to stabilize it. After that it was considered "stable", so my radiation oncologist could safely finish it off. It all went well, I have a very sturdy T6 with no tumor in it.

X-ray picture of my spine after the cement was injected

3. Since there weren't a whole lot of good options for me, I was given a drug option which was very toxic and had 30% chance of success as a first line of treatment. I'm on my 4th or 5th so I'm guessing for me the chance of success would maybe be 10%. So we thought we were at the end of viable options. I was given 6 months to a year for survival, so I stopped working PRN as a Phlebotomist because I thought it was more important to spend time with my family rather than working every 2nd weekend). Then Dr McGuirk came up with another drug option called Pomalyst, which is the new generation of what used to be Revlimid (and before that Thalidomide), both of which had stopped working for me. There was a very small test group of people in my position of 13 people. 9 had died within 6 months, 2 had gone into complete remission and survived 3 years, and 2 went into a good partial remission. So the odds were still not great with the added problem that it could make my GVHD worse which is why it hadn't been tried before. But side effects were low and it was a pill so I wouldn't need IV's. So without anything else out there we gave it a try. I take a 3mg pill 21 days in a row then have a week off. Days 1, 8, 15, and 22 I take 40mg of dexamethasone and that's it. We ,are testing my KLC every month after each round of chemo. After the first we had amazingly good results -it went from 54.37 down to 3.74 and subsequent months 1.96, 2.25, 2.70, 2.72. So I am the 14th member of the small club and number 3 to have a good partial response. Over the past 5 months the next potential avenue CAR T cell (another form of immunotherapy that takes out the patients' own t cells and "tags" them so that they see the cancer cells as foreign again before reinjecting them back into the patient), went from being a bad option to being a good option so hopefully will be a good option when I need it.

So hopefully KLC numbers stay low and my blood counts can stay up given the week off at the end of 21 days of chemo, at the moment they are not budging so that's good.

The other major issue is that all of the prednisone caused a condition called avascular necrosis (AVN) of my hips (not to mention massive weight gain!).  The right hip is worse and the head of the femur has actually collapsed, which means that eventually I will need a hip replacement.  The Orthopedic surgeon I was seeing has left KU, so I just met with a new guy, Dr Tilley. Given all my other issues (i.e. infection risk, blood clots, etc.), he is happy to wait as long as possible to replace. I have started a long-acting low dose painkiller which has helped my hip pain. Ive also added and juggled a few drugs to make my life a little more pleasant. I've added a low dose of Adderall every day to combat fatigue and now have doubled it on the days I'm coming down off the Dex which causes extreme fatigue.

All "roided" up!

So all in all, after 7 years with lots of twists and turns I feel pretty good considering all that we have been through. Also I think the rest of the family are doing well which has been very important to me. Plus, in the middle of all this Charlotte was born, which was a miracle in itself, and has been a great experience for our whole family. She adds a little more crazy to the Delaney household, which of course was what was needed. So please raise a glass today - to my wife, family and friends - without whom I would have tripped on one of the many hurdles along the way and not be able to celebrate 7 years! (Of note, I am publishing this on August 13, 2017, exactly 7 years after my diagnosis!)

Family photo from last weeks vacation to Branson!

January 14th 2016 The On Going Saga.

January 13th 2016

Last time I updated was nearly 6months ago... Long time, lots has happened, mainly Charlotte! She's great but has only slept through the night 5 times, the last being last night. I've been teaching her how not to eat at night. So hopefully she's got it now and Kristy and I can get some sleep....
At the end of August my gvhd started to get out of control  a little and the decision was made to put me on prednisone which is a steroid, they started me on 80mg a day and said I'd be on them best case scenario for 4 months. Some of my symptoms from the gvhd started to get better in 12 hours! Lower arm and leg edema was getting bad and that turned around almost immediately I started the steroids.

One of the side effects was that I had lots of energy on 3-4 hours of sleep and was starting my day at 4am! It was great I was so productive! The kitchen was clean, dishwasher emptied and kids lunches made by 5am. I even got back to yoga for a little while.
After the steroid honeymoon period was over maybe 8 weeks in and i started to taper the dose some of the negative side effects started. Steroids can attack your bones and I was waking in the night with severe knee pain, having to take strong pain meds. Something my doctor said could be necrosis due to lack of blood flow. In extreme cases when people take steroids for a prolonged time they can need hip or knee replacements. 

So because of this we started another treatment called photopherisis which does the same thing as steroids with few if any side effects. The only drawback is the time it takes. I get hooked up to a machine similar to a dialysis machine for a couple of hours for 2 days every 2 weeks. The first month I went in 2 days every week and after that 2 days every 2 weeks. I'm a little tired afterwards but that is the only side effect.

Of course I had the wrong kind of port so they had to take that out and put a new one in, which is always fun.
I had another small surgery recently. Zometa which I had been getting once a month to strengthen my bones because of all the ribs I broke, Zometa has a rare side effect of making a part of my lower jawbone to die. When the bone dies the gum covering it also dies so I had exposed jaw bone in my mouth... An oral surgeon cut away the dead bone and the gum is slowly covering the hole. It is a little painful to eat so that is helping me loose some steroid weight (about 22lbs)...!
So to recap, I'm having monthly kappa light chain blood tests (cancer marker) and although they are slightly elevated they are not increasing. The slightly elevated numbers have been put down to the inflammatory nature of GVHD.
I'm working again, I stopped for almost 3 months because while taking prednisone my immune system is nonexistent. When my doc started pushing out how long I could be steroids to a year or forever at a lower dose I asked him how I could safely (or as safe as possible) go back to work as a phlebotomist. I enjoy the work/people, the money is nice but my mental health benefits the most.

Feb 11th Update.

Well this post is taking forever! So a couple of weeks I got what I thought was a 24hr GI bug which turned in to a 10 day diarrhea fest. I ended up at KU for a few days and was scoped and biopsed. It showed stage 1 GVHD in my upper intestine. Mild but to get ahead of it they treated me by increasing my prednozone from 20mg every second day to 160mg for a week and then 80mg per day. So, kind of back to square one. I guess when GVH flairs up steroids are the only way to go. 

So here I am with more energy than recently and I'm trying to maintain some fitness. A far cry from before but getting better. 

Feb 22, 2016

Last update before posting this I promise. 

GVHD had also led me to have superficial blood clots (2) in my left calf. which after taking Aspirin 325mg per day for a while turned into DVT's in both legs. So now I give myself Lovenox shots twice a day to help thin my blood and break down the clots.

Around Feb 14th I developed a fever and after blood cultures found I had a Staph infection in my blood. Both sites they tested, my port and a peripheral stick, so they started antibiotics and a day later they took out the port.

Once I was negative for infection I had a PICC placed and 4 days ago stopped Vancomycin and started Nafcillin. This runs 24/7 for 10 days. So I have a bag, pump and backpack for the duration. Bags last 24 hours so its not too much of a pain in the butt. Apart from day one when I was in McDonalds with Sophie and put the backpack on the seat beside me and managed to forget about it 3 or 4 times and tried to walk off without it.....

So... 5 or 6 days to go on Nafcillin (love the name)! a bit tired but back looking after the kids while Kristy is at work. I didn't go to work over the weekend. having my 'backpack' and feeling pretty worn out would have made it not as much fun as usual. Should be up and running close to 100% in a week or so I hope.

I have my steroid face back which is always fun, I guess variety is the spice of life...

Welcome Charlotte Rose..

Well it happened, our little girl has joined us. Charlotte Rose was born on June 22nd, Kristy and baby did well and left hospital the next day.

Kristy took off 12 weeks and after that I will step in and be 'mum' when she is working. The kids love her and are at a great age to enjoy and care for her, it is fun to watch them with her.

Our family of 4 is now five... plus Clara the dog! Life is changing for the better and not just because of Charlotte. I am feeling 'normal' which is something I have longed for for quite some time.
I still have chronic GVHD in my mouth. It has also turned up in my eyes, and on my hands and feet. None of this is much of a problem at the moment...my hands and feet are getting better and I have dry eyes. My mouth is the worst of my symptoms, as my gums have receded and I have developed a couple of mouth sores.

Generally I feel good, I'm doing a bit of running, walking the dog and lots of cutting the lawn...  I have also starting working recently as a phlebotomist in a local hospital and am really enjoying it and getting better.  For the past 5 years, I have been the one being stuck for blood tests, IVs, etc and now I have the opportunity to make things a little easier for someone in similar shoes.  The world doesn't need another mediocre phlebotomist, so I hope to be a very good one.

About 3 months ago my Kappa Light Chain numbers (cancer markers) started to go up slightly, first they were 2, a month later they doubled to 4. At that point I asked for a bone marrow biopsy to check what was happening. It came back completely clean so we think the rise in KLC numbers could have been because of the chronic GVHD. I am having this number checked every month and the following month the number decreased by 0.17, not a lot but headed in the right direction. I will have the number checked this coming Tuesday so we shall see. I am hoping the number continues to go down.