Thursday, September 4, 2014

Allogeneic Stem Cell Transplant and FAQ's

It's not everyday that you get some lifesaving procedure done.  Well, unless you are Tiffany.  Simply receiving platelets and red blood cells are indeed life saving.  Without them, well, I think that speaks for itself... You need them.  And that is all I will say to that.

But it isn't everyday that you receive a transplant.  And in Tiffany's case, a bone marrow transplant. 

This post today will likely be informative, but also likely technical.  I continue to be asked about the process, side effects, timeline, etc, that Tiffany will be going through so this post is simply to share what I know and understand.  That, by the way, is crucial for you, the reader, to know.  I find that although I have become well versed in all things bone marrow transplant, it was just the other day that a misconception I had was cleared up.  So forgive me if  I have to come back later and update the post with better information as I better understand it.  I am not a doctor or nurse (though, I have to admit, I am getting quite the training on all things medical over the past years and more so the last few weeks).

What is a bone marrow transplant?
There are various forms of transplants.  Those with cancer of the blood, such as Leukemia, will have a bone marrow transplant as a possible option to them, and in general, is used as a last/final option of treatment to rid themselves of the cancer.  Usually, as in Tiffany's case, the doctors will try other treatments first, in hopes to rid the body of cancer without having to go down the path of transplant.  Although the transplant process has become more and more commonplace AND successful, it is still a rough road to go down - and expensive.  Depending on the type of cancer one has, there are various forms of treatments that can be tried, and with hope, to rid oneself of cancer. 

In Tiffany's case, there is a cancer growing within her bone marrow where some of her white T cells are able to multiply and in turn, kill off platelets and red blood cells.  The effect is two fold... they multiply in the bone marrow which can then cut production of normal cells as there is no space left, but what cells she has left are being killed by these white cells.  This is the cause of why she continuously needs platelet and red blood transfusions.  Some people have asked if her body is making these normal cells, and yes it is, but limited in ability and not fast enough to replace the ones that are killed with the cancer or that die through the normal, natural cell aging process.

Last year, Tiffany took a low dose chemo tablet everyday.  At the time, the hope and understanding of her cancer was that a small dose of chemo would push the cancer back, but not get rid of it completely (or I should say - we were hoping it would, but that was not the idea).  It would push it back for a while, hopefully for many years, before it would come back enough to have to do the low dose chemo and push it back again.  This didn't work the way we were hoping, to say the least.

The transplant purpose is to fix entirely the issues she is having.  That is the hope.  There are two types of bone marrow transplants.  The first is an autologus transplant, in which your own cells are harvested and then once everything is killed off, is re-introduced to your body.  Tiffany, however, will be receiving an Allogeneic transplant, a transplant from a donor.  The idea being that replacing her bone marrow with that of a donors is two fold: 1 - by getting rid of her own 'cancer tainted' bone marrow, we hope that it will no longer be created as the donor's stem cells will create healthy cells, and 2 - the new donors stem cells will create white blood cells that will seek out the cancer cells remaining within Tiffany, find them, and kill them!

What is the process?

After finding a donor (matched through DNA typing), the transplant date is scheduled.  For Tiffany, this was originally August 27th, but was subsequently changed to September 4th.  Seven days prior to the actual transplant date (T-7 [read T minus 7]) Tiffany goes in to the hospital to start the pre-transplant process.  This process varies by degrees depending on the nature of the disease.  It was determined in Tiffany's case to take one of the strongest treatments possible to get her as ready as possible for transplant.  This started on the morning of August 28th.  Each day for four days (T-7 to T-4) Tiffany would receive what they call a Total Body Irradiation (TBI) where they would give her a radiation treatment that covers her whole body that would last about 20-30 minutes two times every day.  That process itself can cause upset stomach, but the side effects come over time.  The idea behind the radiation is mainly to try to kill off any cancer cells in her body.  After four days of two-a-day treatments, the fifth day (T-3) is a chemo blast, where they give her a high dose of chemo.  The chemo has a two fold purpose.  First, it too is to try to kill off the cancer cells, but also, it kills off the bone marrow in Tiffany, making room for the new stem cells that will be introduced later in the process.  On days 6 and 7 (T-2 and T-1), she gets a rest from treatment as the chemo takes effect. 

As cells in your body are being killed off, especially your immune system, many things start to happen to your body, and you start to feel just awful.  A large part of this is in your GI tract.  For the first few days after the treatment, Tiffany has felt just about fine, but as time continues, there are more and more issues related the digestive system.  It will likely get to a point of pain that for a time she will no longer be able to eat, and will be fed via intravenous fluids/calories.  This will happen until such time that her immune system (white blood cells) start coming back.  She will also lose her hair again (which has been growing back quite nicely since the first time it fell out - almost needed  haircut!)

So on Transplant day (T-0) her body has rid itself of the dead cells and room has been made for the new cells to be introduced. 

Up to this point, the donor, which all we know is an international donor, starting about the same time Tiffany went into the hospital (T-7) started receiving a daily shot for five days (T-7 to T-3).  This shot tells the donors body to pull stem cells out of the bone marrow and into the blood stream.  Over the course of 5 treatments, the donor then goes into the donation center and for about 4-5 hours each day for two days (T-2 and T-1) (could be one day if enough cells were received on the first day) and their blood gets drawn, put through a centrifuge, the donation center draws off the stem cells, and then puts the rest of the blood back into the donor.  The process has been described similar to that of a plasma draw, for those that are familiar with that.  The side effects to the donor are minimal, but they can feel symptoms similar to a flu but not lasting longer than the week long process.  The donor may be weakened slightly, but within a week post donation, their body has already recreated the donated stem cells and their life should be back to normal.  It should be noted that the donor prior to this process has gone through a rigorous screening process, with tests, tests, and more tests, to confirm one, that they indeed are a match to Tiffany, and two, that there aren't any diseases in it that will make the transplant worthless. 

Once stem cell collection has happened, the stem cells will be packaged and hand delivered to the transplant team here at the Huntsman, often via overnight flights.

Starting about 3 days prior to transplant (T-3) Tiffany started receiving transplant anti-rejection drugs.  As with any transplant, there is a possibility of rejection, no matter what preparations and precautions the doctors take.  Some of the anti rejection drugs may be something Tiffany takes for the rest of her life, though most should go away sometime down the road as her body conforms to the new immune system introduced.

So, with Tiffany prepped, and with stem cells in hand, the donation can then happen.  On day T-0 - the doctors and nurses bring in the bag of stem cells, which looks similar to a bag of blood, and they connect it up to her central line and start the process.  In essence, all the transplant process is, is simply a blood transfusion.  Almost kind of anticlimactic.  Just like other blood transfusions, it will take a couple of hours for it to be transfused into Tiffany, and then, like that, the transplant is done.  Well, at least what the doctors do.  The rest is up to Tiffany's body.

From this point forward the stem cells in her body will, over the next week or two, find it's place within the bone marrow.  Once there, they will set up shop and start to create red blood, platelets, and white blood cells, and in so doing creating a new immune system.  This process is called grafting in.  Once the stem cells graft and start to create the white blood cells, Tiffany should start to slowly feel better.  During this time, the doctors watch out for what they call Graft vs. Host disease (GVHD).  GVHD is caused as the donors white cells now in Tiffany, recognize Tiffany's tissue as 'foreign' and attack it.  Symptoms of this can be shown in the liver, skin rashes, GI tract, and of course other places as well.  While GVHD can be very bad, it also has a good, effective use as well.  As there is likely residual cancer cells in Tiffany, the new immune system causing GVHD can have a similar effect on the cancer cells and in turn, fights against them and aids in the killing of those cells and helps put Tiffany back into remission.  So while the doctors will do what they can to decrease the symptoms associated with GVHD, they do keep a balance of having just enough to help fight the disease that may be left within Tiffany.

There are two types of GVHD, Acute and Chronic.  The acute GVHD will normally happen within the first 100 days of transplant and can be very dangerous.  Hence the first 100 days of recovery Tiffany will be visiting the doctor quite frequently.  The chronic GVHD while it still can be dangerous, will be treated while Tiffany continues to heal, become stronger, and live an active, full life.

As stated above, the first 100 days are critical, not just for GVHD, but also as Tiffany continues to gain strength and as her immune system continues to come back.  From Day 0 till around Day 28, Tiffany will remain in the hospital as her immune system comes back.  Until then, she will be monitored often for fevers, pains, etc.  Any bacteria or virus at this stage could prove a huge setback and even fatal, hence the precaution of the hospital stay.  She will stay there until her white count comes back to a specific level, whether that is day 28, day 20 or day 45.  Once it is at the level deemed safe for her to go home, she will head home.  But at that point, she will only be good enough to go home.  Our home will need to be free of germs, bacteria, mold, dust, or otherwise.  We are working on replacing carpets and floors (thanks to amazing friends in the neighborhood) and kids coming home from school - a germ infested place, will have to change their clothes and take a quick shower.  Visitors will be kept to a minimum (and please don't feel slighted if we ask you to stay away for a while - just trying to keep Tiffany safe).  She will need 24 hour care that first 100 days.  Somebody will have to be with her at all times, watching for fevers or help as needed.  Also, during these first 100 days we will have to watch her diet.  Any food she eats will have to be specially prepared to ensure that there are no microbials which could cause problems with her compromised immune system.  After the first 100 days, assuming all looks to be where it should be, she will be allowed more freedom of food, freedom of visitors, etc.  However, as I look at the calendar, 100 days will be December 11th, in the midst of flu season, so I can assure you precautions will likely go well past 100 days.

She will continue to get a little stronger everyday.  By 180 days (6 months) from transplant, she will still be recovering, but should start to get back into some semblance of normal life.  The hope is that sometime between 6 months and 1 year she should get back to 'normal' life.  Each transplant patient will be different, but we are going to do everything in our power to get back to normal as soon as we can and rely on our Father in Heaven to help where we cannot.

Other questions we get asked

Why don't you get the donor information?  Wouldn't you want to reach out to them?

Yes, we look forward to thanking the donor one day, and hope to be able to do just that.  However, the method of finding out donor information, as well as the donor finding out recipient, is for safety and concern.  Some of the issues of why we don't know find out before or after transplant are:

Black mail - I guess there have been cases in the past where the donor and recipient knew of each other prior to transplant and the donor blackmailed the recipient.
Health issues related to the donor - if something happened to the donor due to complications of the donation, there would be reasons to not share information.  Also, if there are health issues in the recipient related to the donation, there are also reasons why information is not shared.

That said sometime during the first year (or at one year mark, unsure which) we should be able to send written communication to the donor, and the donor to Tiffany.  This communication will be monitored to not give away personal information that could allow them and us to make contact with each other.  Sometime in the second year we are told that if all is well, we should be able to share personal contact information with each other if both parties are ok with that.

How long will Tiffany be in the hospital?

In total about 5-6 weeks - assuming no complications.  The first week for pre-treatment.  The second and third weeks will be grafting time.  Once grafted in, it will take an additional couple of weeks for her counts to come back to safe levels to go home.

Will she be alone?

She will not be alone!  I refuse to allow that.  I will be spending every other week at the hospital with her until she comes home.  Her mother and sisters will also be spending time with her when I am not with her.  Thus far we have it set up so that she will never be alone and will do whatever I need to ensure that continues.  A big thanks to my parents who have come to take care of the kids in our absence. 

Visitors

While in the hospital, please no visitors.  She should have very limited contact.  Once home, again, very limited contact.  Our kids will be more than enough to manage germs.  Please be advised that we will ask kids friends to not come over.  We promise to make up for that once Tiffany is better.

How is she feeling?

Today (Transplant day) she is feeling blah.  Not sure how else to say it.  She is still able to eat, but she has substantial nausea and as such her food intake has been cut as has the variety.  Mucusitis is just beginning.

What/when will be her worst pain?

She has already started to feel just blah, it will progressively get worse till about day 9 and then will be that way for about 3-4 days.  Her mouth and throat will have large sores and will become impossible to eat, and swallowing will hurt.  Once the stem cells graft in and her white count starts to rebuild, she will start felling better.  As positive a person she is, she is not looking forward to the next couple of weeks.  But the future beyond the two weeks is bright.

Isn't the transplant date considered her new birthday?

Well, not to replace her old one - of course!  But yes, today, and likely forever more, we will be celebrating this as a new birth.  Today she receives a new immune system.  We will forever celebrate this day.

Will the transplant work?

Yes.  Of course.  It has to.  Why else would we do it?

Are there other options?

Not really.  The only other option at this point is to not do it.  We like our chances going through with it.

Do the kids know what is going on?  How are they doing?

Yes.  They have been aware from the very beginning.  We have made a choice to keep them in the loop.  When going through big procedures and concerning times, we have gathered them together and let them in on what is happening.  From there, we let them ask questions and we answer according to their age. 

They seem to be doing rather well despite the crazy life we have right now.  From time to time we will see the emotions as expected.  But thanks to great family and wonderful friends, they are well adjusted and emotionally stable thus far.  Thank you to the family and friends and parents of friends who have taken our children in.  You know who you are - thank you!

Will Tiffany go into remission?

That is the hope.  They are telling us that if by the two year mark there are no signs of cancer, it will likely never come back.  Tiffany and I will be planning a trip about that time to celebrate that day!  She has always wanted to go to Hawaii.  Hawaii or bust in 2016!

How can we communicate with Tiffany?

Tiffany has recently started using facebook with fierce attentiveness.  Though I expect this to fade through some of the more rough days ahead, facebook will be a great way to communicate with her.  You can also communicate with her via messages in comments in the blog, they show up in her email every comment you give, so comment away.  If you wanted to send her a card, send it to our home and we will get them to her.  At this time - don't expect a reply.  She wants to.  But she is doing all she can to just eat and sleep.


As more questions come up - I will try to answer them.  But this is enough for now.  Hope that wasn't too technical and hope it helped answer the many questions I have received recently.

To all those that care and watch over us.  We appreciate it.

Cheers,

Nathan

5 comments:

  1. Hey Fred, thanks for the update. I'm sure you could become an oncologist with all of the knowledge/experience you've gained recently! We're praying for Tiffany, and all of you.

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  2. Excelent explanation. Thanks, Nathan. Tiffany, you are one tough cookie and you can do this. We are all routing for you (and praying religiously)! Can't wait to visit with you when you get past this.

    Marisa

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  3. Nathan! How you had energy for such an informative post is amazing! Thank you so much for the update, you all have been on my mind this week and in particular today. I loved how you did some Q&A - I wish we would have done that with Eric, I think it would have helped everyone immensely! The battles you guys have fought have been so long and intense... and now you have a new army of cells to finish the job! I'm so happy that today has finally come and I'm joining my prayers and faith with the legions that surround you. ♥ Now... heading to FB to post a pic with Tiffany's sign!

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  4. Ha, I have been working on this one since I posted the last one. Just sorry it took four days to finish it - and notice that I left out an item of note - please - no flowers. Fresh flowers can have mold spores on them and a compromised immunity doesn't want it. :)

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  5. I tried to copy and paste some pretty pink lilies but it didn't work. So just imagine them, OK? We went as a family to the temple open house tonight and it sure was beautiful. I remember going one early morning with you to the temple with some other awesome ladies. I was so impressed with your every week attendance!!! May your burdens feel lighter as you experience the blahs. John 14:27

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