Questions about Mini Transplant

[Jyefamily]

Hello all,

I am newly diagnosed with AA one year postpartum.
Red count was lowest at 3. There is hardly any marrow working.
Luckily my brother is a match and I am waiting for a mini transplant at Johns Hopkins.

But here is the question, I have a total body irradiation scheduled the day before day 0. Is that something normal? Should I get out of it?
Fertility is second most important to be, first of course I need to be alive and survive this BMT.

Anyone who has done this before that did or did not do the TBI? How's the outcome? Anyone who had mini transplant and has any issue carrying a child?

Any help is great help! Thank you all in advance for helping.

[Neil Cuadra]

Jyefamily,

My wife had TBI, as well as chemo, before her transplant and we were warned that it can destroy fertility. But we already had our family.

I'm concerned if you haven't had an appointment with a fertility specialist. You need to have all of the options laid out for you, so you know your choices, and a specialist in transplant-related fertility is the best person to work with. I know that Johns Hopkins has the expertise (for example see this article about fertility and radiation).

At your age and with a sibling match, may I ask why you are having a mini-transplant rather than a full transplant? And how do they define "mini" if they are planning total body irradiation?

[GoodDay5150]

We are all sorry to hear that you have AA. My PNH nvr turned into AA, but it was severe enough that a transplant work-up was done right after I was diagnosed. I had a mini-trans in late 2011, so I had both chemo and radiation. I was adv that the treatments would prob leave me sterile, so I am sure that any specialist would advise the same thing to their patients. I was looking forward to my trans bcse by the time that I was diagnosed, I realized that I had syptms for a number of yrs. Good luck in your trans and let us know how you are doing.

[Fana]

Hi jyefamily

My son was also diagnosed with AA may 2014 in September he had a mini transplant his sister was the doner. He didn't have a full body irradiation his conditioning regimen was fludarabine for 4 days and cyclophosphamide for 2days. Good luck with your transplant 👍❤️

[Mary4Mike]

I have the same question as the other two posters: if this is considered mini, why are they doing radiation? Why is it considered mini?

My husband had a transplant September 2009. His was given low dose chemo with no radiation. He had MDS, not AA. This may make a difference. I just wanted to write and share his experience. His donor was his sister, a perfect match. He is 100% cured of MDS. He has very little GVHD. He takes no prescription meds and hasn't for several years. We looked at Karmonos in Detroit first, but they wanted to do radiation. We chose U of M, because they would chemo only. We preferred that and it worked out well for him.

Ask questions and perhaps check other hospitals for there protocols. You are so young and there can be life after transplant. Check out all your options! All the best!

[sstewart09]

My husband had a BMT for VSAA at the age of 30. He did not have radiation and is doing well 2.5 years out. I was under the impression that a non myleoblative or mini transplant did not involve radiation and used less intense chemotherapy.

[Marlene]

http://www.seattlecca.org/newsletter...-03012007.cfm?


Mini means reduced chemo and/or reduced radiation which does not destroy the patient's bone marrow. Full transplants utilize total body irradiation with wipes out the immune system/bone marrow.

Hope this helps.

[rar]

Not to confuse things, at age 73 I had a mini that included 4 days of chemo and one total body irradiation. At one year I am fully en-grafted with my sister cells and suffering moderate GVHD. I think mini refers to the intensity of the TBI and chemo.

Ray

[Marlene]

Thanks Ray.....Makes sense. I think that clarifies it for me at least.

[Jyefamily]

Thanks to everyone that took time to reply.
My doctor said my chemo is a very low doses one and will only give me 2 doses.
Makes sense cause I hardly have any cells left.
And I also called to asked her about the TBI, she didn't explain much about why except for telling it's the standard, soon after I received email from her saying she canceled the TBI order for me. So I was a little confuse.....
Maybe they just do it if you don't ask? Since it's a standard to have that?
But I have been telling her it is really important For me to have a healthy child after.
And she seems really confident about that I will have no problem.

So if I don't do a TBI is it increasing the risk of rejection?

Sorry guys I'm so new I don't know how to reply to each individual of you.

[Neil Cuadra]

Originally Posted by Jyefamily

So if I don't do a TBI is it increasing the risk of rejection?

Technically yes, because you'll still have some of your immune system functioning. But giving you donor cells and immunosuppressants can counteract that.

Having low-dose chemo makes it easier to get through the transplant, but even a little chemo can have negative effects on future fertility. So I still suggest a fertility specialist consultation.

[Jyefamily]

Ok I see. I will definitely request an appointment.
Thank you all!

Oh oh , any suggestion on wigs? Lol
I want to be prepared for that.

[Neil Cuadra]

You may or may not lose your hair from pre-transplant conditioning. It's less likely with the limited chemo they have lined up for you than with a full conditioning regimen. But if it happens, there are two very practical reasons to get a wig, hat or cap:

1. Patients are already feeling some loss of identity. People (including youself) may think of you first as a patient, not as the person you started out as. Having such an obvious and unwelcome change to your appearance can worsen that tendency. With a wig, you can look and feel more like your real self.
   
   
2. Your head gets cold much more easily when you have less hair. Its a noticeable difference, and hospitals are often kept rather cool. A wig or a fuzzy cap can keep you comfortable.

You might even count a third reason: it can be fun to shop for head coverings and collect a few of them. They usually aren't expensive. Patients spend a lot of boring hours at the hospital, so if you need a wig, treat yourself to a little shopping spree and feel good about doing something nice for yourself.

There are many specialists who help with hats and wigs for patients. Some hospitals even have a hat center right on their campus.

[Jyefamily]

That will prolly be what I do during my time in the hospital.
Thank you Neil for all the information!

[Neil Cuadra]

I forgot to mention scarves.

Women may prefer a scarf to keep their heads warm. They're about as fashionable as you can get in a hospital!

Men don't have the "cold head" problem as often as women, because they usually start with less hair, but they sometimes want a hat or cap too. Clothing stores sell "scarves for men", but they are usually for wearing around your neck, not on your head. The kind that go on your head may be called a headwrap or a bandana.

[marmab]

I had a MUD transplant for SAA a little over a year ago. I am feeling great. No GVHD, and back to my old self -- skiing, hiking, biking, swimming, etc. Off almost all drugs. No more immunosuppressants. After being transfusion- dependent for a few years pre-transplant, I haven't had to have a transfusion since I was in the hospital for my transplant a year ago. Yay!

I lost my hair (due to the chemo -- Cytoxan in particular) and used Buffs to keep my head warm. I highly recommend them. They are available online directly from the company, or through any outdoor store (REI, etc.).

[Rea]

You may already be having your transplant, I wish you the best of luck!

I had a RI unrelated donor bone marrow transplant (9/10 match) in Jan. of 2013, age 30, for AA & PNH. I had TBI the day before I received my marrow.

Before my transplant I was on hormones to prevent my cycle. After my transplant my period didn't return until about a year later, though my labs showed me as "menopausal." However sometime before I hit 2 years post transplant, my labs showed me as normal again. It just took some time to balance the hormones out again.

I'm not currently trying for a baby, but they think I would be able to.

I also recommend consulting with a specialist.

For my head: I preferred little knit caps when I was outside (it was winter) but personally was fine indoors. My hair took some time to grow back.