Okay, so a change of plan. We were just about to leave for the airport and I got a call from the transplant coordinator at Sloan Kettering. The first appeal had been rejected and the 2nd appeal will take 1 to 2 weeks so I will not be admitted on Monday. So we stay in Kansas and wait. Just when you think the emotional roller coaster cannot get any steeper....
Anyhoo, I'm happy to be with Sophie and James for longer and they are happy we are here.
For all the people who are due to help us over the next week or two - I am so sorry to change plans at the last minute, but as they say 'it is out of our hands'.

Just got back today from Memorial Sloan Kettering hospital in NYC. We got lots of information and I had lots of tests. So lets see how much I remember and how much Kristy does…

I had lung and heart function tests, a chest x-ray, bone marrow biopsy, cat scan, lab work (25 vials!), and I did my first stress test - all were fine.

I felt a little concerned meeting Dr Koehne for the first time having come so far along the road to having the transplant – what happens if I look into his eyes and I don’t trust him.. Well I’m happy to say I like him, and he answered all our questions. He tells it how it is no beating around the bush or sugar coating – just like Dr McGuirk, so that is good!

So I asked him about the 20% mortality in the first year that I understood from our preliminary meeting with Dr Giralt. He thought it was more like 10-15%, which seems to be going in the right direction.

Writing this down tonight I have forgotten most of what was said over the 45 minute meeting, however my general feeling is that I have a better chance of coming through this in one piece than what I thought before the meeting. So leaving I felt better and more confident about my future.

And here are the details of what she remembered….

Dr. Koehne walked in the room and warmly shook my hand.  He had very kind eyes and immediately put me at ease.  He started the conversation by addressing what Dr. Richardson had suggested with a medication management scheme and then went on the explain the difference in a t-cell depleted allo txplant vs. a conventional allo txplant.  He explained that the GVH (graft vs. host) in a t-cell depleted txplant is significantly reduced so much that some people never even have any GVH.  He said that many years ago it was thought that having some GVH was good for keeping away the disease, but that actually there is a “graft versus tumor” (GVT) effect, which is all you really need to keep the disease at bay.  In a t-cell depleted txplant, the t-cells are given in very small increments at 5, 8, and 12 months so that they can monitor for GVH vs. GVT effects.  If the t-cells at 5 months cause some GVH disease in the patient, then the 8 month t-cell infusion is either not given or is delayed.  During this time they also monitor frequent labs and have specific things they’re looking for in order to monitor the GVT effect.  He said that Dr. Richardson does not recommend this at this time simply because he does not know enough about it because it is not widely published (because it’s still a clinical trial) and also because a conventional allo txplant has many more side effects and risks, which are not in the best interest for patients with myeloma – but that this type of transplant will be the way of the future.  He said that in their experience at Sloan Kettering, one t-cell depleted txplant works better than 2 autologous txplants.

We asked several questions about statistics and survival rates, etc.  He said that he honestly didn’t know all of the statistics behind everything.  When we asked him about a cure rate he said, “Well, that’s hard to say because what is a cure?  I consider a patient cured when they die of something unrelated to their disease.”  He’s been doing transplants for a long time but has only been doing t-cell depleted txplants for about 5 years.  He did say that he has several myeloma patients who are still in complete remission, with no evidence of disease, after 5 years.

He also said that for those patients whom the transplant doesn’t last as long, one thing the transplant does is to “reset” the immune system.  One way this can be an advantage is because if their myeloma is resistant to a particular chemo (such as how Brian’s myeloma progressed despite Velcade and Revlimid), then oftentimes their myeloma is once again susceptible to the drug after transplant.  So what he is suggesting is to do the allo now, followed by medication management in the future if needed.


So that is what we remember. I'm tired now and it is late - so that's it for now.
All in all a good trip. 

Just a quick note to say Labs on Wednesday showed my Liver is getting back to normal since I stopped the chemo Thalamid. All my other counts are where I'd expect them to be and my Kappa Light Chain numbers came in today at 2.76 which isn't far off remission! Which is where I'd like to be going into transplant, last month is was 11 and remission is under 1.9 so great news there! My doctors here decided on one more round of Cytoxin and Velcade before NY and hopefully that should tip me into full remission. That's all for now - thank you for the messages of support they are very much appreciated.

6.19.12   So This is a little sooner than I had planned....

Well lots has happened since my last post. I had hoped I would never continue this blog but here we are. I'll need to update the photos as we are all looking a little older - mostly the kids...

So a quickish update. In June last year I planned on 10 years of remission, so I set about making some changes. The kids were starting preschool and parents day out and therefore needing me less, so I decided it was time to even the score on people taking blood from me and signed up for a 6 month Phlebotomy course at Johnson County Community College. I did my clinical experience at Olathe Medical Center (OMC) and got a full time job there starting two days ago....which was all a great plan because I really enjoyed the class, enjoyed sticking needles in people, and got child care sorted...however the cancer was not playing ball. My doctors here, whom I trust completely, encouraged me to seek out other opinions for treatment options, so I went to see doctors in New York and Boston.  I tried to treat it with more chemo and that didn't seem to be working as my cancer markers went up despite doubling then quadrupling Velcade (although Velcade might be slowing down the progression). Revlimid stopped working, Thalidomide was too toxic to my liver, and the jury is out on Cytoxan so far. So anyway, none of these drugs would cure me and eventually they will all stop working. It is hard to quantify how long they would keep me alive but I was going through them quicker than I had hoped and felt I was being painted into a corner. 

So while my kidneys were still able to get me through a Matched Unrelated Donor (MUD) stem cell transplant we decided to go for it. My hesitation has always been the age of our kids (3.5 and 5.5), if I don't survive they would not remember me which is a sad thought...certainly not James, maybe Sophie would remember a little. Anyway, the 2 years I thought I could wait until transplant have disappeared and I found out last Friday that I will be having a T-cell depleted allogeneic stem cell transplant from a MUD on July 22 or 24th at Memorial Sloan Kettering in NYC, which means I will be staying in or around the hospital there for 4 months.  My doctor there will be Dr Koehne - it feels kind of weird to start receiving treatment from doctors other than the ones here...  So I called OMC and explained my situation to Rozenia, my intended manager, who was really great; calling Friday afternoon to say you're not starting your job on Monday is not fun for anyone. I got sooo close to being a phlebotomist! Well maybe in a year I'll be back knocking on doors looking for a job.

The risks are different from before, 20% die in the first 12 months, but 80% live 2 years or more and of them 20-25% are cured - which is of course what we are aiming for. MM is not something that could be 'cured' up until now as other peoples cells are not normally used. Certainly my first transplant was autologus (from myself), which is the conventional treatment for MM.

Okay so maybe not as short a catch up as I thought, but all that said... I feel fit and up for the next battle.

I'm a realist though, and I know how hard a fight this is going to be. 
Not a lot else to say right now but I'll be updating and posting photos as we go forward.

Wednesday June 29th 2011 - 180 day follow-up visit

Today we received the long awaited results from my 180 day check where I had blood tests, 24hr urine and a bone marrow biopsy. Of course Kristy was able to check them early so we knew I was now in complete remission, which is better than at 100 days when I was in 'good partial remission'. I can now stop taking my prophylactic meds and may or may not take a low dose chemo drug in the future. This will be one of the questions I'll ask Dr Richardson in Boston. Normally someone in my position would take Revlimid to prolong remission but this is metabolized through the kidneys and as mine are affected by myeloma it may not be a good idea, we'll see what he says.  Also, since I'm in complete remission, that would be another reason we could potentially postpone taking Revlimid at this time. In the future I will be having blood checks every month and cancer marker checks every three months for the rest of my life. Blood work today was encouraging: hemoglobin 12.5, wbc 5.1, platelets 233 and creatinine 1.61.
So that's about it. I'm in remission!  The statistics say that on average someone with Myeloma stays in remission for 5-6 years. I have a chromosomal abnormality which means that average stats for me are not that good. Of course statistics are by definition immediately out of date and group all kinds of people together. I am hoping  to help make those stats a little better.
So this blog should get quiet for some time...a long time hopefully, nothing to report will be nice. The last year has been an interesting one. Thank you to all the people who have helped us along the way, it would have been so much more difficult without your help. My experience of cancer so far has mostly been highlighted by good people, from my doctors to my friends and family... with a little sickness thrown in. So that's not such a bad deal.

Friday June 24th 2011

I went in to the clinic on Tuesday to have a strep test and a cbc (basic blood test), the reason being I have a sore throat which is a little concerning. Strep was negative and counts were good: Hemoglobin 11.7 Platelets 195 and WBC 5.4. So it looks like a simple cough/cold/sore throat. I also moved my 180 follow up meeting to next week.

6 Months Checkup - June 7th 2011.

James & I on a family outing to see Thomas.

I had my 180 day check up at the BMT clinic at the Westwood campus.  I was able to do everything there without going up to the main KU hospital which was great. First job of the day drop off my 24hr urine bottles (yes I'm a 2 bottle man). Then down to X-ray for 40 minutes or so for a full skeletal survey. Then blood work at the Lab. By this time I was so ahead of my schedule we went to the coffee shop to kill some time and some oatmeal raisin cookies! The 'we' today is my Dad and I, he is visiting from Ireland at the moment. It was nice to show him where I've been spending my time over the last while. While we were waiting around with our coffees I got the results of the X-rays (pretty fast!) and nothing has changed since my 3 months check which is the news I was hoping for. Also blood work showed: Hemoglobin 11.4, WBC 4.3, Platelets 186 and Creatinine 1.73, all great news. The wbc is a little low but nothing to be too concerned about at the moment as all the other numbers are good. Numbers will fluctuate a little, and as long as all the numbers aren't going down it is just the natural ebb and flow of my body recuperating.
Next was the bone marrow biopsy which was fine, it's my 4th I think and in case anyone has to have one (and I hope you never do) they do not hurt that much. I had heard stories of pain and suffering on a grand scale and in all four cases this did not happen. I've had more painful dental work.
The results from the 24hr Urine and the biopsy will trickle in over the next week and I will get the official results on June 21st when I meet with a doc to discuss the full results.
One more encouraging result I got today was that in one of the blood tests my kappa light chains (cancer marker) were in the normal range for the first time which is amazing! To give you an idea of how things have changed when I was diagnosed my 'score' was 397.5, at 100 days post transplant I was 2.7 and now I'm 1.5 and to be in the 'normal' range you have to be under 1.9. So as I said amazing news and interesting that there has been an improvement from 100 to 180 days.
Generally I am feeling tired, I'm pretty sure the weather/heat has a lot to do with this. I'm still able to workout, but not as hard as I would like. But given some patience I'll get there.