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.