Time for an update - Nov 5th 2019

Well I'm back at KU Hospital for my second round of (VRD)PACE. I started yesterday which wasn't the planned 4 weeks after the first round. I had an infection in a tooth that needed sorting out and a visit from my friends from college Alistair and Maria (I can't believe it's been 30 years since we went to college!). So I've had an almost 8 week break (I started treatment on 9/10/19 last time). This has allowed my body to become stronger, so fingers crossed I'll be out by Friday and It will be a smooth week.
While I'm in hospital I'm doing extra testing to see if I qualify for another bridging drug trial. At the moment I haven't been able to get a solid plan B in place, the options I wanted to try didn't pan out. However I'm told FDA approval of CAR T cell treatments for Multiple Myeloma is not far away, maybe even early 2020. So the plan is try to keep bridging till then and hope to have that treatment here in KU Hospital.

Had fun showing Al & Maria the sights!

So until then I jump from bridge to bridge. I feel good at the moment which helps.

Sadly I lost a friend to MM recently, Jerry Bayton was a friend. He was always positive and Encouraging and basically a fantastic human being, Rest In Peace Jerry, I miss your presense in this world.

This is Jerry, Shannon and I a while ago catching up.

Shannon is a friend who also has MM and is doing well.

So until any thing changes, I hope everyone is doing well and staying healthy. 

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.