Kidney with Bone Marrow Transplant

[Ninanna]

Well, today after speaking with the Director of Transplant medicine at Hopkins, I have decided to do the kidney with a bone marrow transplant.  I will be their first patient to do this protocol, and I would like to try and document everything, the good, the bad, and the ugly to give back to the community and help others make informed decisions.  I do not have a date yet, but they are thinking within the next 1-2 months.

-A very excited Holly

[jeannea]

Good luck!

[Emerson Burick]

Good for you! I hope it works out. Please keep us posted.

[Ninanna]

So here is a little bit of background.

The protocol that is being used for the bone marrow transplant is almost identical to the one they used for a sickle cell disease trial a little while ago:

http://www.hopkinsmedicine.org/news/media/releases/half_match_bone_marrow_transplants_wipe_out_sickle_cell_disease_in_selected_patients

For this particular trial they are looking for patients, preferably younger ones, who are a half match with their donor (3/6).  The donor also has to be either a parent, sibling, or child.  The recipient shouldn't have any other major problems like a heart issue, etc.  There also must be a low chance of recurrence of the kidney disease, and both donor and recipient need to be EBV +.

I have IgA Nephropathy, and apparently they don't consider that high-risk for a recurrence of the kidney disease, even though normally after a transplant IgA still shows up in the new kidney, probably because it's rare to lose a transplanted kidney to IgA.  On a side note, my surgeon didn't want to speculate too much, but there is chance that with the bone marrow transplant, it could actually cure my IgA, but no one really knows since you don't treat IgA with a bone marrow transplant.

This Friday I am meeting with the Bone marrow transplant expert that wrote the protocol.

[UkrainianTracksuit]

Sending best wishes that everything goes smoothly!  Here's hoping for a successful procedure that not only will help you but provide information to others! 

[cassandra]

Sounds very exiting!!!!!

Good luck, and all the best

Love, Cas

[Angiepkd]

That sounds great!!!  Best of luck to you!  Keep us posted.   

[Ninanna]

Meeting with the bone marrow transplant doctors went well.  I got lots of good information, including a timeline of the protocol.  The study nurse unfortunately couldn't make it, but she is going to call me next week.  They said she will basically end up being my 'personal' nurse so to speak, making sure that everything that needs to happen happens. 

Unlike the protocol that was done at Mass General, this is a 100% full bone marrow transplant.  Chemo, full body radiation, etc.  I will lose my hair, but that's ok, it will grow back! They said the absolute earliest this procedure can take place is the beginning of December, but there are lots of tests and things that have to be done between and then now, so I wouldn't be surprised if it happened later than that. 

[cariad]

Unlike the protocol that was done at Mass General, this is a 100% full bone marrow transplant.  Chemo, full body radiation, etc. 

I'm not sure I understand what they mean by a "100% full bone marrow transplant". I read up on the groundbreaking Mass General protocol (results published in 2008) and they definitely did use radiation and I would imagine chemo as well. Unless they are referring to a different study? Is the goal to get you off all post-transplant meds?

I had a combination kidney/stem cell (also referred to as bone marrow) transplant at Northwestern and had chemo and radiation. All the protocols have their differences, though, so I'm curious to read about the one you undergo. A couple months ago I was invited to a talk in London that my surgeon gave about his protocol and he went through how everyone in the trial has fared. What I took away from it is that conditioning is everything (well, almost). Is your PRA zero? That would be enormously helpful if it is, although mine was around 15.

If you have any questions about this sort of procedure I'd be happy to answer from my own experiences, though if I'm honest I am grateful that I knew very little about what lay in store for me when I was pre-transplant. I got some of the stranger side effects, but in the end I would say the operation was a complete success.

[Ninanna]

I'm not entirely familiar with the ones at North Western.  However the bone marrow doctors I met with Friday said the protocol used at Mass General wasn't designed to fully replace the patients bone marrow.  They only maintained the donor bone marrow for a few weeks, and then reverted back to their own bone marrow.  Because of this, only a few were able to get off the immunosuppressants, and even then it was only for 9 years.  This protocol at Hopkins I am doing is designed to completely engraft the donor bone marrow.  If all goes well, I won't have any of my bone marrow left.  The idea being that my tolerance for the kidney won't fade over time.

[Ninanna]

I'm curious to know how many patients in your trial achieved full chimerism. As for my pra I don't know. I'm assuming its low as I've never had a transplant, been pregnant, or had blood transfusions. I also have been cross matched with my donor several times. To be honest I'm not sure I really want to know as I'm still going to go through it and its just one more thing to worry about.

I really do believe in the power of positive thinking. The night before my surgeon called me to tell me about this trial, I was gearing up for a regular tx that was scheduled for Nov 4th. That night I made a promise to myself that I would break the record at Hopkins for having a transplanted kidney. The next day he called me about this trial.

[cariad]

I'm not entirely familiar with the ones at North Western.  However the bone marrow doctors I met with Friday said the protocol used at Mass General wasn't designed to fully replace the patients bone marrow.  They only maintained the donor bone marrow for a few weeks, and then reverted back to their own bone marrow.  Because of this, only a few were able to get off the immunosuppressants, and even then it was only for 9 years.  This protocol at Hopkins I am doing is designed to completely engraft the donor bone marrow.  If all goes well, I won't have any of my bone marrow left.  The idea being that my tolerance for the kidney won't fade over time.

OK, I think I understand what they are saying: that Mass General patients did not achieve durable chimerism, that is indeed true and it made coming off immunosuppressants a gamble for their patients. There were only 6, one I believe rejected outright (PRA ~5) and of the other 5 some have had to stay on low doses of immunosuppresants but as far as I have ever read or been told, their first patient continues to be off all immunosuppresants. I think the figure of 9 years comes from the fact that she has only been off the meds that long (I think it's more like 10+ years now, though.) You can read her whole story on Mass General's site. She does not have durable chimerism, but they believe that her ability to stay off the meds could be down to something called microchimerism, which from what I have read is not well understood yet. If you have heard anything more about her case of the other Mass General participants, I always love hearing that information and would appreciate any new info you could supply.

The goal of all of them should be to completely engraft the donor bone marrow, but I'm confused about the claim that you won't have any of your own bone marrow left. Have they used the word 'chimerism'? Because by definition that is a hybrid, in other words you would have two immune systems co-existing harmoniously. If you will only have the donor's immune system then I would imagine this is something markedly different to what I had done.

I'm curious to know how many patients in your trial achieved full chimerism.

I'd have to look at my notes from the talk to see how many achieved 100% chimerism, but those who achieved what they considered a high enough level of chimerism were taken off all immunosuppresants. Chimerism levels did go up and down with most participants, but so long as they retained sufficient chimerism (not necessarily 100%) then they were able to come off the drugs, and almost all if not all of those stayed off all the drugs. I believe they claim an 80% success rate, but again I'd have to look at how they are defining "success". Not everyone was able to come off the drugs completely, and there have been a few unusual cases in the trial. I wish I had remembered to ask permission to record the talk because it was absolutely fascinating, the range of scenarios they had. With I believe only 20 participants, they somehow wound up with a range of ages (18-60+), levels of donor match, underlying causes for kidney failure, you name it.

As for my pra I don't know. I'm assuming its low as I've never had a transplant, been pregnant, or had blood transfusions. I also have been cross matched with my donor several times.

Then odds are your PRA is zero. Fabulous!

To be honest I'm not sure I really want to know as I'm still going to go through it and its just one more thing to worry about.

I think that's wise! Good luck and please keep documenting your progress.

[Ninanna]

The goal of all of them should be to completely engraft the donor bone marrow, but I'm confused about the claim that you won't have any of your own bone marrow left. Have they used the word 'chimerism'? Because by definition that is a hybrid, in other words you would have two immune systems co-existing harmoniously. If you will only have the donor's immune system then I would imagine this is something markedly different to what I had done.

The way it was explained to me was that the goal was to achieve 100% Chimerism.  At 100% Chimerism the patients blood cells are all completely derived from the donor stem cells.  It's a bit wonky with words because Chimerism does mean a hybrid, but at 100% chimerism, it's really not a hybrid anymore.  I suppose the original bone marrow is still there, but perhaps not making cells?  Otherwise how could people start with 100% chimerism and then decline over time?

[Ninanna]

Also, I would just like to say what an awesome company I work for.  We are a stem cell company that has actually interacted a lot with the bone marrow community, specifically our efforts to help find treatments for GvHD.  Now I really don't know too much about it as I work in the biosurgery side of things as a peon in the manufacturing department.  However, my boss's boss knew about this, mentioned it to the CEO who is very informed when it comes to bone marrow transplants, and he took the time to research the protocol, look at other studies that had been done before, and then sit down with me and discuss risks and things to ask the transplant team.  I can't be thankful enough for all the support I have around me!

[Shaks24]

That does sound like a great company to work for.

[Ninanna]

That does sound like a great company to work for.

Tell me about it!  We just had our annual benefits meeting and the HMO plan (no deductible, $20/$30 copays, $1300 OoP maximum) is still 100% being paid for by the employer and free to employees!

[Ninanna]

Yesterday I met with a fertility Doctor to talk about the possibility of freezing embryos/eggs.  With the Chemo and radiation required for the bone marrow transplant, there is a very real and likely possibility that it would prevent me from having children in the future if I wanted them.  After discussing the procedure with the doctor, and I think I'm going to do it.  The only issue is cost.  Most insurance will only pay for fertility treatments if you are found to be infertile....which leaves in a catch-22 kind of position.  I'm not infertile, but I'm going to be doing a treatment that will make me infertile.  He said normally with cancer patients they are able to make use of a charity program that cap the cost to the patient at around $5,000, but I don't have cancer, so that's out.  Monday they are supposed to have an estimate for me, which could be anywhere from $7,000-$10,000. 

I think I'm still going to do it though.  So at the end of the next 3 weeks I should have some little frozen babies somewhere.  Crazy to think!

[Ninanna]

Everyday I am constantly surprised by the kindness of others. The fertility doctor decided to do his services for free, as a professional curtesy. That still leaves some costs for the OR room ect, but they are working very hard to keep my costs under $5,000. He sympathizes as he himself is a cancer survivor and his wife needed a liver transplant. I feel so blessed and I can't hardly believe it!

[jeannea]

Ninanna, that's incredible news! There are still some really good people out there.

[Ninanna]

Well so far the Invitro Fertilization (IVF) process has been interesting to say the least.  I am about 6 days into it, and I feel like a pregnant sea turtle with all the eggs.  I can feel my enlarged ovaries every time I walk around, and I cannot wait until they suck these things out, hopefully in the next 4-7 days. 

The hormone injections have been pretty easy.  I started out with a couple meds that I mixed together into 1 syringe and injected once a night.  Now I am up to 3 meds and 2 injections once a night.  The needles are super small and painless, and everything gets injected in the tummy area so far. 

[jeannea]

I had no idea you could feel your ovaries in this process. Sounds weird. Are your emotions a mess? It actually sounds like you're doing ok. I hope this works well!

[Ninanna]

I had no idea you could feel your ovaries in this process. Sounds weird. Are your emotions a mess? It actually sounds like you're doing ok. I hope this works well!

My emotions have been good except for one incident.  Something very minor happened at work on Wednesday, but all of the sudden I was so mad I was shaking.  I came really close to just throwing papers every where.  Then the next minute I felt like bawling my eyes out.  Fortunately I was able to take a step back and take deep deep breaths.  Once I realized it was the hormones making me feel that way, I felt much better and in control. 

As for the ovaries, something that is normally smooth like a ping-pong ball has turned to a bunch of grapes lol.  They can't take the eggs out soon enough!

[lainiepop]

Wow, have been reading this thread With interest, hope all goes well for you. look forward to reading your Updates

[Ninanna]

Well the egg retrieval procedure is set to happen Wednesday, early in the morning.  Tonight I have to take a shot with a long needle that goes in my butt, not really looking forward to that! 

No eating and drinking after midnight on Tuesday.  I will be lightly sedated and they told me it will take about 15 minutes to get them all out.  Then I wait around in recovery for a couple of hours before I go home.  From my last ultra-sound today, they are expecting to get anywhere from 10-15 eggs.  I cannot wait for them to be out and my ovaries to go back to being normal size lol. 

[Shaks24]

Best of luck with the procedure. I hope it goes well for you.