Natural Killer Cells : the perfect Xmas present!!

Things are moving steady in St Louis. I don’t see much more than  the view from my window at the Barnes&Jewish hospital, but Susana tells me it’s a nice mid-size city where it’s easy to move around for shopping and daily chores. People are friendly and the weather is quite mild so far.

We already rented a nice apartment ( with visitors room) and brought our car from San Francisco so we are ready to spend here several months for the pre-transplant, transplant and outpatient period ( when I’m out of hospital but need to be really close in case complications happen).

As I mentioned in my last post, we are doing a special treatment ( Natural Killer Cells) that could maximise my chances before the transplant. As always with experimental treatments nothing is guaranteed and we’ll “cross fingers” that it does the job.

NKC Cells from Ana

For this NKC treatment I had the support of my sister Ana who came all th way from Spain and spent several days with us going through a battery of tests  from the Barnes&Jewish team. They confirmed  she is a good donor for NKC so we moved ahead.

So on Tuesday this week I received the NKC cells she was extracted over several hours the day before. What a GREAT XMAS PRESENT!!

Again, this is an experimental treatment  and it may not work at all but it feels great be supported and taken care by family and friends.

Over the next weeks we’ll know more about the results and this treatment and the preparation for transplant in January.

Meanwhile, Happy Holidays to everyone wherever you are around the world and PLEASE enjoy every moment with your loved ones. It’s precious and unique!!

 

 

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One door closes, one arch opens

Well, this post may be the one that I had more time in my mind wondering how to write it as it reflects so many changes, frustrations, surprises, disappointments and new hopes…. As always, I’ll be very open with the situation so no “sugar-coating”

Let’s start with a summary of where we were last time : I was receiving treatment at Stanford Hospital in order to get my body in good conditions for the Bone Marrow Transplant. As you may remember the New York treatments where quite aggressive and affected my heart and lung capacity. This is the reason the Bone Marrow Transplant team had delayed (cancelled?) our transplant process.

A DOOR SLAMS, BIG TIME!!

Last week I asked my doctors team and Stanford BMT to discuss when would we be evaluating my status again and decide if I was ready for transplant. This is where the big surprise came : the Stanford BMT team said that they DONT WANT TO DO MY TRANSPLANT, not now, not ever…. and were not even interested on my numbers

I’m not going to discuss much on the reasons of this decision, what I could see is a combination of :

  • Confidence : everytime I had a conversation with the BMT team about transplant, their chance % was smaller and the underlying message was “you can try but it’s not gonna work”
  • Politics : BMT is a totally independent department that can take its own decisions independent of the doctors and very profitability driven ( a simple transplant is much more profitable that a difficult one plus gives you better success ratios in the rankings)
  • Risk : Mine has become a very-high-risk transplant and it’s better and simpler to use that limited capacity for an easier/more normal transplant
  • Personalities of some of the people involved who don’t believe I should keep fighting, and it would be easier just to wait for the end

As you can imagine these news were a BOMB to all our plans we had been working towards for the last 8 months since the transplant was decided as the best route. The transplant process is a very complicated 3-4 months period and we had planned everything to make as comfortable as possible. We had moved our house closer to Stanford, we live only 10 minutes away and we have a huge amount of friends and support network in the area. It was going to be VERY TOUGH but we wouldn’t be alone and close to home.

With this decision Stanford shocked us, and forced us to move to EMERGENCY PLAN looking for alternative Cancer Centers ( Los Angeles, Seattle… ) who may be ready to pick a “complicated case” in the middle of the process. And we didn’t even have names or introductions to work with… This was going to be an impossible task and of course my Leukemia was not going to stop and would not allow me to do much travel to check those potential centers for transplant

A WINDOW OPENS, A BIT OF HOPE!

Our doctors at Stanford had been on our side and they started looking too for options. And this is were Ryan Lynch, our Fellow Hematologist, mentioned he had worked at the BMT unit of the Cancer Center at Saint Louis ( Barnes&Jewish Hospital at Washington University) as someone who could be interested. They cover many of the complex cases of the central states, and they don’t have a policy of “only simple cases”. Just the opposite they have several trial programs trying more effective transplants to patients who are not in remission ( like myself ). They are not one of the top 5 centers in the country but they sit comfortable in the top 10 and seemed happy to take risks and fight with us!!

A couple of phone calls, more information on their transplant protocol, a conference call with the team and by Sunday we were on a plane to St Louis ( Missouri). Since then they’ve done all tests to verify that I fit into their criteria, and we have a combined plan of pre-transplant treatment and BMT transplant which should happen in January.

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For us, everything has changed. We were ready to fight this battle at home next to our friends, but the “destiny” has forced us to go to the “middle of nowhere” where we know no one. No problem!! We’ll create ourselves a nice routine, meet new people, some friends have said they may visit, we’ll focus on the treatment and cross fingers that the innovations that this proactive team are testing can finally get rid of my bad cells forever!!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Gift of Life event : over 400 new donors registered!!

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Last Tuesday was a great day for several reasons. One of them is that Susana and I flew back to the “Best Coast” to move on to the next phase of my treatment. She is now happy at home with our beloved cats and nephew, and surrounded by a great network of friends, while I’m enjoy the exceptional care of the Stanford staff and getting ready for the challenging transplant process.

The second reason that day was special is because of the “Gift of Life” event hosted at Vodafone HQ in Newbury, UK. This event came from an idea I shared with some of my Vodafone colleagues ( or should I say family…) to benefit from the visibility I have across the company ( advantages of having such an easy name as “JJ” 😉 and try to benefit other leukemia patients by recruiting new donors to the global registry.

Weeks of preparation by a great team of volunteers led to delivering a great event hosted at the Pavillion, Vodafone’s main event are in the campus. Hundreds of people visited through the day, enjoying Spanish food and music, taking funny pictures and many of them registering as Stem Cell Donors to join the Global Registry and potentially save the lives of patients somewhere around the world.

The results are very impressive :

  • Over 400 people registered as new Stem Cells donors joining the Global Registry and becoming potential “life savers” for leukemia and other blood cancer patients
  • Over 3.000 UK pounds were raised through the donation site, in order to support “Delete blood cancer” activities to increase the donors base with all type of events

And looking at the following pictures it seems that people had a great time!!

Thanks to everyone who attended and supported this event. It means a lot to see my great Vodafone family pouring their support to help other people in my same situation.

And IT’S NOT TOO LATE to make your own contribution to this cause. If you are UK based you can just send an email to giftoflife@vodafone.com with you house/office address and they will send you a registration kit ( cheek swab) so you can become a donor and join the Global Donors registry.

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Back to San Francisco, Moving to Transplant & Changing the Game!!

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Hi all!!

Well, another long period of not updating you my friends. I’m going to be honest, the period in New York has been tough both physically and mentally for both Susana and I. Being away from home and our friends for three months is not an easy experience, and the treatments and side effects I got there have been some of the toughest so far with multiple infections and sometimes several days not moving from bed ( not good for my walking challenge!)

After achieving partial cleaning in my last chemo cycle, and discussing with the New York and Stanford doctors, we decided to use this window of opportunity to come back to San Francisco and move into Transplant.

Let me be honest ( I promised to be positive but honest when I started this blog), this is not a nice picture. Even after using some of the strongest chemo in New York, my leukemia cells are starting to reappear and the transplant is going to be a “high risk” one with the double risk of rejection effects to donor cells plus my leukemia cells to come back and make the transplant fail. If this happens then the options become much more limited…

But…. we have to give it our BEST SHOT!!. Is time to “CHANGE THE GAME” and move into the attack mode with the heavy artillery that are the transplant chemo ( much stronger than normal chemo but with no way back) and the cells of the donor which have the ability to fight against my remaining leukemia cells.

This situation requires considering all the “What if” and this is something that we cannot ignore.

SO, WHAT IS NEXT?

Last Tuesday I transferred directly from the airport to Stanford Hospital cancer area and tomorrow I’ll move to the Bone Marrow Transplant unit where I’ll be in the care of fantastic professionals for this very delicate next phase. After several days of ablative chemo ( it destroys everything left in my bone marrow) I’ll receive the stems cells of the donor ( Superman cells) and cross fingers that these cells find their way into my bone marrow and start producing new healthy blood cells. At the same time, hopping that the leukemia cells are gone and don’t disrupt this process, or the few remaining are taken care by the “fighters” in my donor cells.

As I mentioned in another article, I don’t believe in %’s and statistics for these cases. The numbers are not nice, but I strongly believe each one of us create our own number and of course I’m ready to make mine the best possible with the help of all of you.

So, wish me the best for the next steps. It’s going to be tough and much more complicated than anything so far, but with your support I know we can go through it!!

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YES, I am the Real Vampire!!

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I’ve been writing often about the importance of Bone Marrow Donors and how critical they are for Leukemia and other blood cancer patients to find a match for our transplant. Yes, I still have a full matching donor ready and waiting for my body to be clean and carry on with the transplant ( cross all your fingers for me! )

But today I want to highlight another key role : the BLOOD DONORS. Blood cancer patients are one of the largest consumers of Blood and Platelet transfusions, as during most of the time we are not able to produce our own cells due to Chemo treatments ( which cancel the activity of the bone marrow for several weeks ) of sometimes due to chronic bone marrow problems which last for even longer, sometimes years.

The active lives of red cells and platelets are very short ( just a few days) so we patients need to be given frequent transfusions to keep our numbers at an acceptable level. Red cells are responsible to carry oxygen across the body, and platelets are needed to take care of injuries and avoid bleeding. So both of them are critical to keep us alive!!

Some months ago I was getting red cells and platelets once or twice a week during the “low part” of my chemo cycles, but these days I’m getting them DAILY! This is due to the more aggressive nature of my current cycle, and so many chemo cycles have made an impact into my bone marrow which takes longer to recover and produce its own cells.

So as a good VAMPIRE I’m consuming lots of blood, and thinking everytime on the altruistic people who have donated it somewhere around the US to help people like me stay alive and carry on with our treatments and dreams.

If you are a blood donor, anywhere around the world, THANK YOU for your generosity!!

As always, if you have any questions or would like me to write about any specific aspect of this experience, JUST ASK in the comments whether in the Blog or Facebook page!! Don’t be shy!

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UPDATE : Moved to Plan B – back to Cocktails & no more walks in the Park!!

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(Posting here my latest update in jjuan.me ( Facebook page) as I know some of you cannot access that one or get alerts from this blog)

Hi all!
Still around and kicking ass, just slower. The bad news are that that the Clinical Trial I had joined here at MSK in New York hasnt worked. After a cycle of 28 days of treatment my leukemia cells havent responded to the treatment and had come back aggressively into my system. They are clever and learn fast, I can tell you!

So we had to take control of the situation, come into hospital and do a “cleaning” treatment to bring my body to a stable place after a month of “no cleaning”. Basically they connected my body to a machine that “washed” my full blood and reduced the amount of circulating leukemia. It’s only a short term measure but it works!

And now we are into Plan B. MSK Cancer Center has other chemo combinations different from what we did at Stanford, and we have started one mix that my cells havent tried before. In the next weeks we’ll see if this mix can “surprise” my cells and take me into remission so we can fly back to Stanford and progress into Bone Marrow transplant with good chances ( a transplant done with a non-clean system is not a good idea so that’s why we are delaying mine until we achieve that clean status)

About the walking, I have to manage my expectations and averages as my energy and space to walk here at MSK are very limited!! But still looking to maintain my 5.000 daily average. So good that I managed to get those long Central Park walks last month!

So, the WalkwithMe Challenge is on and if you want to support other leukemia patients to find their donors, please go to http://donate.jjuan.meand make your small ( or large) contribution. Every little helps!!

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Walking keeps me fighting : WalkwithMe!

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You may have noticed that I’m walking a bit these days. In fact I’m walking A LOT for my constantly low hemoglobin levels ( red blood cells which carry oxygen through the body)!

That’s one thing that leukemia and chemo do to your body: they reduce the amount of red cells so you feel easily tired and dizzy. But, as I said somewhere… Who’s in a hurry???

I started walking as a mission on January 14th, the day after I was diagnosed. As soon as I got my Fitbit armband I was walking across the internal walkways of Stanford Hospital and later on I was allowed to go outside with my good friends Tobby ( my six-wheeld IV pole) and Darth ( Starwars like anti-bugs mask). Only those days of infection or deep weakness I missed my walks.

If you go to Stanford F-ground, ask for JJ “the walking guy” ( or the Paella guy should work too 😉

Anyway, walking is something that I can control. Walk faster or slower. Ten minutes or two hours…. It keeps me focused on the target for this challenge. Stay fit, stay healthy through the several cycles of chemotherapy ( which takes a big toll in all your body!) and maintain in good shape for whatever comes next.

After seven months of treatments ( and six cycles of strong chemo) doctors agree that my constant exercise allows them to try new treatments like this one I’m just joining in New York. Walking has played a huge role into that, and it’s something I recommend to everyone going through similar long-term challenges.

As an engineer, I’m a data driven person ( check my leg pains story) so as you can expect my walking has been well measured and documented over these months. My hospital room has been always decorated with daily walking charts.

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My lesson : CHOOSE YOUR ROCKS AND NURTURE THEM!!

Some rocks are given to us ( my beloved Susana, my great  Family and you, my incredible global network of Friends) but others are more Personal Choices and need to be chosen and nurtured.

So…I’ll keep walking. Some days a lot, some days only a few steps. But step by step we’ll get there!!

And in addition to that, now my walking benefits others. With my “WalkwithMe!” Challenge I’ve made a commitment to :

– Beat Leukemia

– Walk 500.000 steps over 100 days

– Raise $10.000 to fund adding over 100 marrow donors to the global registry

– Celebrate at the end of this race with one ( or many) Giant Paellas!!

So if you want to WalkwithMe! in this challenge, check my daily updates at jjuan.me and my fundraising page at donate.jjuan.me

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