See you soon!

So we are nearly off to New York, everything is in place, now all we have to do is get through the good byes! I did have a little blip in so far as I had a KLC (kappa light chain) blood test a couple of weeks ago that showed I was coming out of remission, the kappa light chains went from 1.38 to 1.98 in a week. However, a test last Wednesday (results today) showed it is back down to 1.89 - so no problem.
Some people have asked if we have an address while we're in NY. We thought it best not to test the hospital postal system, so the address below is our cousin's address that we'll be using until we get an address at the Hope Lodge:

Jennifer Hutz
c/o Brian Delaney
68 Conselyea
Brooklyn, NY 11211

I'm sure I'll say it again but - thank you to all who have said or sent words, prayers or good vibes to me and my family. I truly have been blown away by all the help and encouragement we have been given.

I wanted to mention the two donation links on the blog, I really don't like asking for help - especially for money. It is there because people asked for ways they could send us money. I want people looking at this blog to do it to see how we're doing and to keep us in your thoughts. When I'm looking at other blogs I always feel a little guilty when people have a 'link', and I want to say now please don't feel that way. We have been amazingly lucky to have great insurance and MSK (Memorial Sloan Kettering) have also helped us bridge the financial gap when insurance refused to pay for the transplant (with financial aid). I (and a carer) will be staying in the Hope Lodge in NYC for up to 5 months, and that is provided free of charge. We still have expenses for sure, as Kristy is off work unpaid right now and then will have to go part-time when she comes back. Friends and family have been incredibly helpful...so just to say, the 'link' is there for people who want to help in that way, but just by checking my blog and sending words of encouragement, you are helping.

People have asked how I feel about the transplant - well, to tell you the truth...We've done our research and we know this is the best chance for me. I am not dwelling very much on what is to come as to do so is pretty debilitating. Leaving the kids - I just can't think about, we have prepared them and us as much as possible and why start the pain and tears early! The transplant is what it is...no fun and all we do is get through it as quickly, intelligently and carefully as possible. Having said that I am really interested in the process and the technical details of what happens to me. However not feeling great makes it a little bit difficult to track with everything. I'm bringing my camera so I will hopefully document some of what happens but through experience I know it is difficult to do that when you're not feeling great

I'll take a pic of my room when I get there!
Brian.

You are not going to believe this but...

It is on again...NY, the transplant. At the 11th hour a lady from MSK (Memorial Sloan Kettering) managed to change someones mind or twist an arm or something. I have spoken to her a few times as has Kristy and she has been the only person who seemed passionate about finding a way to get me the transplant - and she did it!  I will meet her before I get transplanted to say thank you and maybe then I'll get the details of just how she managed when no one else could. But as of now the financial/insurance barriers are gone and I will be admitted August 26th and the next phase of my treatment begins!
The last few weeks have been quite the rollercoaster and I kind of had my mind set on staying in KC with my family - the idea of being in NY for the next 4-6 months is not a fun one. However speaking to my doctor here and in NY this is by far the best option to stay alive long term - so there really isn't a discussion as to will I or won't I. It is a great opportunity. The risks are not too bad, when I spoke to Dr Koehne (pronounced Kona) He was able to tell me:
Over the past 4 years 40 people with MM have had t-cell depleted transplants, of those 70% are still alive.
In the first 100 days post transplant the risk of death is very low, near zero he said if he had to give a percentage it would be about 2.25%.
Infections are not uncommon, in the first 100 days they are both bacterial and viral but rarely are they bad enough to land you in ICU, they are routinely treated with antibiotics.
3 months to one year post transplant the biggest danger is viral infections such as CMV and EBV and of course myeloma coming back.
Over the first year risk of death is between 10-15%.
Of the 3 people he transplanted 4 years ago, 2 are still in complete remission and the other has relapsed.
So not bad all in all.
So we will get ready again, this time with no delays hopefully!

Making Plans

So the 2 'last ditch' attempts at getting the T-cell depleted have not worked...but another possibility has come up...nothing more on that right now - we'll just see what happens. It is another long shot - and I promise - it is the last this time.
So yesterday I went into clinic to start plan B, a plan for the future. We are going to see if Insurance will allow me to try to collect more cells (collection maybe a problem since chemo makes the process more difficult) as I'm in a 'stringent full remission' at the moment. Kappa light chain number is 1.38 at the moment. We will check on the plasma number but all being well, it is a good time to collect cells with a view to using them for an autologus transplant in the future sometime if need be. Other than that I'll be back on various chemo drugs after collection of cells, first as a consolidation therapy and then maintenance using some of the drugs I've used in the past and maybe a couple that our good friends at the FDA have/will approve in the near future.
So in short, we nearly have a plan, and I'm nearly sure it will be carried out in KC.
Having been off chemo for a while means I'm back to my old self-ish. I feel pretty good and even went for a run this morning. Well a run-walk-run-walk kind of thing which felt great - I'm sure I'll be sore tomorrow as it has been a while since I ran - but it'll be worth it.

Well Blue Cross Blue Shield came back today and rejected our 2nd and last appeal...but there are a couple more things we can do. We can contact the State Insurance Commissioner in Topeka and ask them to review the decision of the insurance company, they can over rule it. The other route we can go is for Kristy to contact the benefits department through her employer (KU Med) because our insurance is something called a "Self-Funded" policy, meaning that KU provides health care and insurance benefits to employees out of their own funds.  We were told that in many cases, the organization itself (i.e. KU Med) can overturn the decision of the insurance company. Both seem long shots to me and I must say I feel exhausted with the whole thing. My doctor here in Kansas has looked at my contract with the insurance company and feels strongly that it supports this treatment (the allogeneic transplant in NY), which of course so does the transplant team at Memorial Sloan Kettering in NY. 
This treatment was the best shot I had at a cure, it was only a 25% chance, but it was a chance. Sadly without it I have a slim chance of seeing my kids grow up. That makes me sad and this evening I cannot kick that feeling. Tomorrow is another day and we will get on with the two last shots we have. I will also start plan B, as I have been off any maintenance drugs for 3 weeks and need to start them up again as soon as possible, and investigate any other treatments that will help me stay around as long as possible.

If anything changes, we will let you all know.  In the meantime, thank you all for your kind thoughts and words of encouragement - they are appreciated far more than we can ever express.

Well we are still here! We are still talking to our Insurance company, they seem to be holding tightly to their money and we are calling anyone we can think of to make them see the light and honor their contract with me - as we read it. 
So just to say, we should know in the next week or so whether or not we will be able to go to NY and get the transplant at Sloan Kettering. If not we have been talking about a plan B and C, so there are still avenues to go down however B and C do not aim at a cure. I am still trying to get some concrete statistics from Dr Koehne in NY. It seems that one of the big risks with the T-cell depleted Allo is risk of infection which is very high because of not having T cells or fighting cells. And they don't put any in for 5 months! So the high infection risk is for a long time! Also the writing on the wall seems to be saying that 4 months in NY could easily turn into 6 as they don't like to let people 'out into the world' without those T cells.
As you can imagine I've been really enjoying my time with Sophie and James. James really doesn't understand what is happening but he is so funny these days and his personality is blossoming right now - I hate to miss it. I'm hoping he gets to liking Skype a little more than he does now. Sophie understands a lot and asks me not to go away to New York sometimes. It is a crazy life we find ourselves in for sure.
I could go on and explain all the many stressful details we have been dealing with since last Thursday, but instead...I think I'll have a beer!
 

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.