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Latest update from Stanford


Trebs

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I just wanted to give everyone a bit of an update about what's going on with me. I told some people the details, but figure this would be easier and more comprehensive.

 

Back in late February, I finished the main chemo treatment for the Mantle Cell Lymphoma (MCL) that I have. After that, did a full round of testing and it showed that I was in complete remission (CR) - WOOT!

 

What the MCL did to me, was basically cause my bone marrow to produce blood cells in the wrong mixture - way too many immature white cells and that left very little room in my blood for red cells (which explains why my face was grey when I was in Denver last year). So the chemo basically zapped my marrow to try to get it back on track.

 

A lot of the studies they have for this are new - but one encouraging bit of information they've studied is for patients my age who go through and beat MCL, then do a bone marrow transplant - after 10 years, 95% of those patients are still in complete remission, where as patients who don't do the bone marrow transplant, only half are still in complete remission. So from the start with my treatment, my doctor has been planning on me doing a transplant as the finale to my treatment.

 

I started with the prep work for that in the past couple of weeks - pre-testing, insurance authorization and a ton of teaching about what will happen and how I need to take care of myself. There are two different routes to go for the transplant - autologous which means using my own bone marrow or allogeneic which is a transplant from someone else. My sister was tested and is a perfect match - but due to a lot of other reasons (mainly recovery time and risk factors), we're going to go the autologous route (which since it's my own cells, also means no risk of host/graft rejection issues).

 

The thumbnail of the process is that I'll get a drug that causes my bone marrow to overproduce the right type of basic immature hematopietic blood cells (a type of stem cells) that will then be harvested from my blood. After a break, they'll give me heavy chemo for a week to kill off all my existing bone marrow and then put those harvested cells back into my blood (the actual "transplant" day). They'll naturally then move into the void of my bone marrow and start producing blood cells in the right way. The majority of this work will be at the Stanford Cancer Center.

 

The actual day of transplant is scheduled for June 9. This week, I'm down here at Stanford, through Saturday morning to get a blood catheter put into my chest (to make it easier to harvest my cells, as well as give me any IV's or transfusions during the process) as well as a preliminary chemo treatment. Then starting Saturday, for about two weeks, I'll start giving myself injections of the drug to help the overproduction of the stem cells into my blood - but at least I'll be able to do this step here in Sacramento. Probably around May 12th or so, I'll head back to Stanford for the actual collection process which will take four hours a day and can take between one and five days (depends on how many cells they are able to collect each day).

 

These cells will be frozen and I'll have a break until June 3 when I head back to Stanford for an intensive round of chemo over a week time - and then the day after will be the transplant - which is supposed to only take about half an hour. I'll be discharged but need to remain in the Stanford area for at least thirty days - and follow a very rigorous regime of taking care of myself - things like not drinking any water unless it's been boiled first. I can't touch raw foods - Dan will have to do all of the cooking and cook things well. After one month - hopefully my immune system will have recovered enough that we'll be able to come home to Sacramento - but still heading back to Stanford often for tests and meetings. Recovery is estimated to take about five months total after transplant (so - mid-November?). I have had very good recovery up to now with my regular chemo, so its very possible I'll be able to recover faster - but unfortunately, Dan and I are also trying to prepare for a worst-case scenario.

 

Its still a long process ahead - but at least having a schedule and idea of the procedures makes it easier to deal with. As things happen, I'll try to keep everyone updated with how I'm doing.

 

Robert

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Thanks for keeping us informed. I am so glad to hear that you are in complete remission, that is great! Good luck with everything!

 

 

:hug:

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Remember.... if you need ANYTHING let me know and i'll help the best I can :)

 

*tackle hug*

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Its still a long process ahead - but at least having a schedule and idea of the procedures makes it easier to deal with. As things happen, I'll try to keep everyone updated with how I'm doing.

You are a strong man !

Thanks for sharing. I'm sure it will help you to know that we are all with you. You need certainly luck, but even more faith in the success of your cure.

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