Happy New Decade!

                                                                                                      Me.

2020...well as a kid I thought by now we'd at least all have flying machines! But instead we all have phones, every man woman and child (at all times 🙄).
Anyhoo, I hope this new decade finds everyone well, full of New Years resolutions that mostly will soon be shelved until next January. I'm having a go, I thought, what am I waiting for I need to start working out. If nothing else, just to compete with the kids push-up competitions. I may have left it too late, Sophie can currently do twice as many as me.
So a brief update on my cancer journey/battle/adventure as there is not much happening at the moment which is nice.
The second VRD PACE (chemo in the hospital) went well, it's amazing how 'easy' it is without a 'man cold' 😉. I managed to walk the halls every day and left hospital when I planned to.
Now I have chemo once a week, it consists of Dexamethesone, Velcade and Cytoxan. I will stay on this as a bridge until it stops working. I didn't qualify for the trial drug I tested for in hospital because my renal function wasn't good enough.
So the hope is that the FDA approve some better treatment options soon, before this bridging chemo treatment stops working. The big new treatments are targeting BCMA which seems to be a great option at the moment and pretty effective. Basically it's immunotherapy in some form, top of my list would be a CAR T cell treatment but there are also others that are being fast tracked to FDA approval given their efficacy in clinical trial.
So until then I try to workout and beat my kids at push-ups, I try to enjoy every day with family and friends. I also enjoy the wonderful excitement of the Chiefs football team going to the Super Bowl!
#GoChiefs

PS. I had Kristy check my grammar before posting this and she said it was very apparent I had got steroids yesterday...so I guess I'm a little extra chatty. Please take this into account when reading.

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.

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.

Maintenance begins...

(Beginning of March):
So..I guess I should update this blog then...
I know I'm not winning any awards for keeping people up to date...please forgive me.

Today I start maintenance chemo, I will be getting Carfilzomib 2 days a week, every two weeks..

About 30 days ago I finished 5 months of chemo treatment which was Dexamethasone, Cytoxan and Carfilzomib. Also 30 days ago I had my 5th DLI, this time however it was about 10 times larger than the previous one.

Didn't quite finish writing that post, so here I am March 28th with more information and another attempt to update...

A couple of things I want to mention having just read my last blog entry. Carfilzomib is in fact the new Valcade. The new Revlimid, should I choose to use it, is Pomalidomide, just thought I should sort that out.

I did end up having 5 rounds of treatment because BMT dragged their feet a bit on deciding how to do the DLI. It was decided that we would contact the donor and ask for more fresh cells. I think the main reason for the this was my adverse reaction to the stem cell preservative DMSO many moons ago when I got a DLI in NYC.

The decision to give a much larger amount of T-cells was made by Dr McGuirk because my best hope of longer term survival is GVT (graft versus tumor effect) which is when the T-cells or fighting cells attack the cancer cells in my body. There is a danger of there being too much of a fight between
my cells and the donor cells which is called GVHD (graft versus host disease). This is an age old balance with stem cell transplants, and I feel this is already too much information and you're falling asleep.

Lets just say GVHD kills a lot of people and causes all kinds of problems acute and chronic so it can be just as much of a problem as cancer.

The trial I followed for 2 years was trying very hard to find out how to get GVT without any GVHD. However after 4 DLI's, which were done in the hope of creating GVT, this had not happened and my disease had returned. So with a view of giving a lot more T-cells and hoping to be able to manage a small amount of GVHD (which brings with it GVT) it was deemed a worthwhile risk and the hope of a longer  remission.

...and so far no GVHD, so I might get more cells in the future. I've been told the window of when
GVHD can happen is 4-8 weeks post DLI.

So as of today March 31st 2015, I feel pretty good. I tested positive for RSV about 10 days ago but got over it in a couple of weeks (and no pneumonia) which is good for me.

Dr Lipe told me about a new test called 'flow cytometry' which is done to the bone marrow biopsy. It detects 1 in 10,000 cells vs the old test which detected 1 in 1000. So I requested a BMB and the results came back negative which is great! It means I'm in remission (as per the new more sensitive test) and I can continue with my planned Carfilzomib maintenance.

Another continuance...
April 14th
So busy day today, I went into clinic for maintenance and when I saw McGuirk he confirmed what Kristy and I had thought, I have chronic GVHD in my mouth (looks like a rash, feels like sunburn at the moment). To check if it is in my lungs (which is a bigger problem) I did a number of tests, starting with running up a few flights of stairs and checking my HR and O2 in my blood which were both fine. I also had a CT scan of my lungs and then a pulmonary function test (PFT). Both of these tests came back fine, which is a huge relief!

Over the past weeks I've done some running (not much) and been on the trainer in the basement 30 minutes at a time. On chemo days and for a couple of days after I feel too tired to work out but the rest of the time is fine.

So all in all, things are going in the right direction. Hopefully a little GVHD means a longer remission and having 2 weeks between treatments means my strength can continue to improve...which will be helpful as our new baby girl is due in 8 weeks!

Here comes Christmas again...

Hello again,
As usual lots of changes since my last update. That's what happens when one updates only every blue moon...
So, I started my most recent IV chemo because back at the end of August they did a bone marrow biopsy (BMB) and found 70% plasma, this is not good as I think I mentioned...
So I started the Dexamethozone, Carfilzomib and Cytoxan protocol. This had not been tried on a patient who had had a stem cell transplant (SCT) before and has only been designed for patients too old or infirmed to be able to survive a SCT.
After 2 months (2 cycles) of chemo I had another BMB which showed 2% plasma! This is basically remission again which is great. Turns out maybe a little too great in so far as the 70% from 8 weeks earlier must have been a lesion (an isolated spot of myeloma) because it would be highly unlikely for the chemo to be able to reduce the cancer by that much. Multiple Myeloma (MM) is a patchy disease and 'lesions' happen. These are spots where MM have weakened or eaten away the bone. This is how I broke ribs so easily this year. Therefore BMB's can be a little inaccurate when used to give a general idea of how much cancer is generally throughout ones bones. I was told a PET scan would give a more definitive evaluation of what was going on but this was turned down by insurance at the time. Later, after I had started the IV chemo and I pushed again for the PET, it was allowed but at that stage it was too late to be used for the original intent which was in deciding whether or not I needed IV chemo. Having said that the PET was helpful in showing that compared to one done maybe 6 months previously the chemo was helping to slow cancer activity in my left ribs and right humorous, which had been 'hot spots'. Also it was nice to know cancer wasn't everywhere...
So today is day 4 of my 4th and final round of this chemo protocol. I will have my last drugs on Christmas Eve and follow that with week off from chemo drugs which completes the 28 day cycle and 4 months of treatment.
As the treatment has gone on the cumulative effect has made me feel sicker and lets just say I'm glad we are not doing a 5th round!
Fatigue seems to be constant and worried me enough to ask for a cancer marker blood test. All is good, my Kappa light chain (KLC) numbers are "undetectable". It's just that last time I felt so sick it was cancer slowing me down, happily this time its just chemo.

So the next step is another donor lymphocyte infusion (DLI), and then the maintenance drug will be Carfilzomib which is actually the new generation of Revlimid not Velcade as I said a couple of posts ago.

I'm not sure if there is much data on how well this all works, I've asked Dr Koehne at MSK in New York for any data on 'people in my position' from his trial but I have not heard back yet, and I'm not sure if he will have any data anyway as I'm in a pretty small group.
On my week off every month from Cytoxan Carfilzomib I feel pretty good so once I am on just Carfilzomib maintenance which is IV just once every 2 weeks I should feel a lot better as long as it can keep MM at bay.

On a much more positive note, Kristy is pregnant! We are due to welcome Delaney kiddo number 3 in June 2015! We were trying to have another baby before I was diagnosed in 2010 and luckily we asked about banking sperm at that time. This of course is because once I started chemotherapy I was sterile. Since 2010 it has become part of protocol to discuss this at diagnosis and offer the option to bank sperm.
So through much thought and discussion we ended up 'investing' in another baby, through the wonders of IVF! The financial 'investment' was made easier though the Livestrong Foundation as they give financial help to people in our position with cancer. I did not set out in life to be a new dad at 51 but I also did not plan on terminal cancer at 46. Having said that I was never much of a planner as some of you may know... Having said all that, our family is not just about me and it's not just about now. We looked into the future and without knowing any facts about that - made the best plans for our whole family. As best as one can at this time anyway.
If this journey has taught me anything it is that life is fast and can be fleeting so get as much of it as you can and enjoy it as much as you can.
Happy Christmas!

I'm back - sorry for the interruption

Apologies for the last entry I was disappointed  and angry to be sick again. However I have had time to brush myself off and am back to my 'don't give an inch' mentality. I still feel good, maybe thanks to steroids but whatever it is I'll take it.
So I'm on my third week of chemo. Cytoxan, Carfilzomib and Dexomethozone and it seems to be going well. I had a port placed and after a few days of soreness it is fine, a necessity as my veins are a little difficult to find these days. I was afraid Cytoxan would knock me down as it did in the past but as this is a lower dose it isn't bad.
So life goes on and I am feeling great and will continue to do as much as I can for as long as I can. My ribs are almost better and all the other pains and aches are subsiding so I plan to run and ride in the near future...not like before but I will be wearing my HR monitor and driving it up as is possible (safely).
So I may see you on the road...

Treatment again

Well, here I am again, sitting in a treatment room waiting for some IV chemo...
Lots of things have happened since my last entry, but I was kind of enjoying ignoring them and just getting on with things.
However, for posterity and to bring this blog to a close I will up date the last week or so.

I had my two year post transplant work up last week, blood work, 24 hour urine, bone marrow biopsy (BMB). The bone marrow took at least 45 mins, this was due in part to there being lots of holes in the bone (kind of like Swiss cheese) so it took some time to get a good sample. That should have been a hint, plus a week or so ago I fractured two ribs while twisting awkwardly opening a door!
On Monday last I had a meeting with Dr McGuirk and the first thing he said when he arrived was that we needed to get Kristy on speaker phone... Never a good start! He had the preliminary results of the BMB and there was 70% plasma in the marrow where there should have none. Multiple myeloma causes over  production of plasma cells which takes over causing all kinds of problems one being bone weakness.

So the plan is to go on an aggressive chemotherapy protocol for 6 months and see if we can get control again. The drugs will be outpatient which is good but will make me feel crappy which is bad. I've had Cytoxin before and am not a fan. Carfilzomib is the new generation of Velcade and have not had the pleasure. Dexamethasone should help with my chore list...

So as things progress with my treatment I may not post again, never say never but I'm not sure why I'm doing this anymore. The first time round on a roller coaster is fun with all the ups and downs but the second or third doesn't get any more interesting, so I might just spare you the blow by blow...

Remission once more..

Okay, so the title says it all but just for the record here are the details: Test results from May 13th are as follows WBC 4, Creatinine 2.13, KLC 10, Lambda 7 so the all important ratio between kappa and lambda is 1.3 and normal range is 0.26 - 1.65. And yes I am pleased to say that means I'm back in full remission just in time for my next DLI next week. All my rib problems are healing and the only issue I really have at the moment in fatigue from taking Revlimid. Good news!

Okay so I jumped the gun a little :-( , it turns out after checking with my doctor I am not in remission. I am in 'stringent control', so I am a little bummed as this does not sound as sexy as 'remission' but I hope that remission is still in my future.

Quick update..

Radiology Oncology said they could radiate the Clivus and that there would be minimal acute side effects. Dr Mitchell thought that the facial numbness was a direct symptom as the nerve affected runs by the Clivus, because the numbness has gone the problem was being controlled by the chemo and DLI. Therefore radiation was not immediately needed and we can watch and wait for a while.

Kappa light chain numbers came down nicely in one week from 35 to 12! So I'm hopefully that before long I'll be in remission again. More KLC numbers tomorrow...

Yes it's been a while...

Well lots of things have happened since New York and I have been slow to write them down for a variety of reasons. I managed to write an update last week but also managed to delete it somehow as well!
So, I got the DLI and I'm also taking Revlimid, they have changed the dose twice so now I take 10mg per day. I will also be getting DLI's every 3 months.

I had a PET scan and they found myeloma in lots of bones including both humorus's, left scapula and ribs. They also did a head MRI and found some myeloma at the top of my spine/bottom of my skull, the specific area is called the Clivus. The lesions are I believe small to medium and too scattered to radiate however the Clivus is in an important place so today I am consulting the radiology oncology dept to see if it's a good idea to use radiation to stop any further damage there.

At their highest my kappa light chains were 57.75 and last Tuesday March 25th they came down to 44. That was 4 weeks post DLI and 2 weeks after starting Revlimid. On April 1st KLC was 35 so it is headed in the right direction!

I have been breaking/damaging ribs at quite a rate, three in the last few months. I also managed to get pneumonia in both lungs, because coughing with a broken rib hurt! But right now I feel fine other than a few bumps.

I had my CD4 count (measurement of my immune system) checked 4/1 and it had gone up from 170's to 254 which is great and means I can stop one of my most disgusting meds Mepron. It also means the last DLI worked and will help me catch less viruses.

So my next step is to hopefully get the KLC back down to normal. I have always been 100% donor which is kind of confusing (even though the reasons have been explained to me) and the last BMB (bone marrow biopsy) was clear. So hopefully my marrow stays clean for long enough for me to reduce the KLC to normal.

I noticed last night neuropathy is back, just in my feet - but I hadn't missed it. I guess it means the drugs are working.

Well, here we are again...

So I have a few health updates.. Six to eight weeks ago I was working out and damaged/broke a rib. Not sure if it actually broke then as I could still run and continued my 4 mile runs a couple of times a week. Then I got a cough and cold and so the rib hurt a bit more. I had it X-rayed and it was fractured...I guess the cough may have finished it off.  Since it hurt to cough, I tried not to, but with a viral infection already underway it led to pneumonia. I think they caught that early and after 4 days of IV antibiotics I felt better. I followed this with 7 days of oral antibiotics. A couple of days after finishing them of course I got thrush... the down side to antibiotics...
So all that said these are problems that I can sort out with some R&R, except last Friday I managed to  tweak my rib again... Heyhoo.

Three weeks ago I had an abnormal blood reading, it showed my Kappa Light Chain (KLC) number was up, this means cancer is back. My doc retested then did full skeleton survey, bone marrow biopsy and chest CT. The rib fracture didn't show signs of myeloma and the preliminary BMB results didn't show any abnormality. The CT is when they found pneumonia. So the plan was to check KLC in two weeks to see if the numbers trended up or down. My doctor thought the fracture and pneumonia could be giving a false reading. So two weeks later the numbers had gone up from 7 to 17 which confirmed the bad news.

Having spoken to Dr Koehne in NY, I moved my appt with him forward and will be getting a DLI next week. Following that the plan at the moment is to go back on the oral chemo Revlimid. This drug stopped working before but being that I had an allo transplant, it's effectiveness may be back.
Another patient on the trial has been put back in full remission following a DLI so that would be a long shot hope I think.

We have a lot of questions for Koehne and hopefully will have a much better grasp of what the future holds after our meeting with him.  So I guess I'm still getting my head around the fact that 'round three' is on.

Looking forward

Happy Thanksgiving! I am thankful for the time I have with my kids, for my family and friends, for all my experiences both good and not so good.
Well I thought I'd give an up date, normally no news is good news and this is still true, things are going well. This time last year I was still in NY and hoping to be home for Christmas, I managed that but was pretty slow on my feet. It is so lovely that this year is very different. Over the past few months I have been able to run and cycle again and on a Thursday morning join Keith, Jennifer and who ever else is crazy enough to get up at 5am to run 4 miles. My need to walk up hills (because my HR gets a little too high) has dropped from 3 to 1, so I feel real progress. I am running 3-4 miles 3 times a week and averaging under 10 minute miles now so am happy things are feeling like they did before I was diagnosed. Cycling is a little too cool at the moment (it's 18f/-8C) outside and I'm a little tired of the trainer, so running it is then. My next hurdle physically is getting back to yoga...

My Dad is visiting at the moment which is nice, we have both been a little 'under the weather' over the last year (he had a triple bypass last Feb.) so it's nice to see him. He is playing golf again and feeling like his old self more.

I've been spending a lot of time looking after the kids these days as Kristy is up to her eyes in college work and clinicals. They are great kids (most of the time...) and I really enjoy my time with them.

I've had more than my fair share of colds this year and got flu the first time I went back to church but have been able to get rid of them all although it takes me a little longer than it used to. So I am still trying to minimize my time with big crowds.

We had a 1 year post transplant/ full remission/100% donor party on October 12th to thank everyone for their help in getting me and Kristy and the kids through the last 13 months or so. It was the best time! Thank you to the people who made it and thank you to those couldn't be there but helped us be able to get through the last year and celebrate!

Check ups are every 6 months now so next visit to NY is in Feburuary, when I might get another DLI.  And in 2014 the trial I was on ends and we get to see data on how we all did. Which will be interesting!

I don't feel like a 1 year old...

But tomorrow is the one year anniversary of my stem cell transplant or as it is officially called my T-cell depleted allogeneic stem cell transplant from a matched unrelated donor (MUD), whom we found out is actually from Germany - not America like we previously thought! It has been an interesting year, four months of it spent in Manhattan NY and most of the rest at home, with a few short stays at KU hospital.

Kristy and I travelled up to Sloan Kettering a couple of weeks ago for my 1 year work up. It was run of the mill stuff, arrive at 7.30am for bloodwork, then a meeting with Dr Koehne to discuss plans for the future and some questions we had. Then bone marrow biopsy which was very quick, I think he is in and out in about 5 minutes! Next was my DLI (donor lymphocyte infusion), this was my second one. The last one (in May) was 'fresh', meaning the T-cells arrived the day before I got them. They were then separated into smaller amounts for infusions and the one I got this time was the first one that had been frozen and preserved in an agent called DMSO. This turned out to be an issue...

I had an IV in order for the T-cells to be infused. They were about 10 to 20 ml and Dr Koehne did the honors which only took about 2 minutes. He was just about to leave and I said that I was feeling a bit weird, I laid down and within a minute was very flushed and having chest pain and trouble breathing, my blood pressure dropped to 80/40 and my heart rate went from 122 down to 44 within a few minutes. I was pretty uncomfortable and was having trouble following commands and opening my eyes. To counteract this hypersensitivity reaction (similar to anaphylactic shock) they gave me IV steroids and Benadryl. Dr Koehne called a rapid response so there were a few people milling about. I was put on a non-rebreather oxygen mask and needed maximum O2 for a while as my oxygen saturation went down to 86%. I was on that for a while and they also did an EKG. It's interesting that through all the different chemos I've had I've hardly vomited and during this reaction I 'let rip' a few times.


Dr. Koehne giving me the DLI

Recovering after the events...still have the non-rebreather mask on

I was planning on 30 minutes of observation but because of the reaction they kept me for 3.5 hours.
So needless to say, we are pretty sure I react to DMSO! Next DLI, if there is a next time, they can wash the lymphocytes (AKA T-cells) and then premed me with similar drugs I got post infusion.
A lot more excitement than we were planning for sure. We left the hospital just after 5pm having had a full skeletal survey, went out for a relaxing dinner, and later went up the top of the Rockefeller Center to get a birdseye view of Manhattan at night...a nice end to a busy day.

I have most of the results already and all my bones are stable and my blood work is fine apart from my CD4 count (immune system) is low - this is likely due to another virus I had and should recover just fine. Preliminary bone marrow results show I'm still in full remission. The only thing I'm waiting for is the percentage of donor cells in my bone marrow. I'm hoping for 100% donor again.

One year out I feel really good, I am getting on the bike a little and things are getting easier. It has been a slow road back to 'normal' but I am looking forward to being 100% again.

The best part of our journey and by far the most humbling has been the amazing help we have got from our family, friends and even new friends. People have gone out of their way to help, and truthfully we could not have done this without all of you. Thank you again for your help.

Times Square

NYC trip - 9 months post transplant check up

We arrived home Saturday a little tired but very happy to see the kids. Our visit with Dr Koehne went well, on Wednesday we met with him and I had bloodwork done. For some reason I thought I was having a bone marrow biopsy but they are only done 3, 6 and 12 months post transplant unless they are concerned. So no BMB was a nice surprise.
He seemed very happy with me and said we could go ahead with the donor lymphocyte infusion (DLI) tomorrow as the cells were flying in that day.

Friends from London Maralyn and Astrid came to visit!

The only concern he had was that I had stopped one of the medications that I had been taking since transplant - Mepron and substituted it with a monthly Pentamidine treatment which guards against a certain type of pneumonia which can happen post transplant. The other thing Mepron does is guard against Toxoplasmosis (you can become positive for this by having a cat) which my donor tested positive for, it is unlikely to be an issue but Dr Koehne will look at my immune system numbers (CD4 count) and decide whether or not to put me back on Mepron. The reason for stopping it was it was causing a lot of nausea and therefore stopping me from eating and drinking enough. Anti nausea drugs didn't help very much.
The DLI was fine, no side effects. They put an IV in and it is just a 10ml syringe that Dr Koehne slowly pushes in. Through conversation with Dr Koehne I found out my donor is in Germany! So the 41 year old American male donor information I had was incorrect. After one year I believe I can find out more and maybe meet him.
Other things I know about the clinical trial I'm on are that after 4 years the first 4 patients are still alive and 3 are in full remission. So I have a 75% chance of being in remission in 4 years! That is pretty amazing! One of the patients (there are 50 in all in the trial so far, and it finishes in 2014) was given a DLI after 3 years which caused him to go into full remission, this is very interesting.
My Creatinine continues to stay above 2 (2.1) which is annoying but probably due to the drug Cidofovir which I took for BK virus. I'm hoping it will slowly get a little better.
I should get the rest of the blood work results over the next week or so but so far so good and Kappa light chain (cancer marker) numbers looked a little lower. The ratio between Lambda and Kappa is 1.11 and in the normal range.
So we'll see what the rest of the results tell us.

Bryant Park with Maralyn & Astrid