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