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. 

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.