AA and Pregnancy??????

[ketiacakes]

Hi,
I was dx with SAA in nov of 09. I had ATG in Dec 09. I am currently on cyclosprine and whit ct is 2.5 red is 8.5 but platelets are only 21000. My doctors want to start preparing me for a transplant (my father is a half match no full siblings) I am so scared. I want to start a family and im scared that after the transplant I will no longer be able to have children. Someone please share you experiece with child birth ans AA if theres a chace.
Thanks

[Neil Cuadra]

ketiacakes,

There will be a "Pregnancy and Bone Marrow Failure Diseases" session (Sunday July 11, 2:30pm) at the upcoming AA&MDSIF 2010 Patient & Family Conference in Bethesda. If at all possible I suggest that you attend the entire conference and bring your questions with you.

[bchenaille]

Ketiacakes:

This is an incredible forum and everyone here has experienced the nightmare that you are going through right now. This too shall pass and we pray that you will be an inspiration for others who are newly diagnosed.

I really don't believe anyone here in this forum, nor in the medical community will have an answer for you. This is perhaps one of the most bitter/sweet aspects of having SAA . . . the medical community has come so far in treating it, but they still don't have solid answers on any of it. It's all about percentages and you will eventually become a statistic just like my daughter Kathryn.

Before you commit to any specific treatment option, you should exhaust all possibilities to ensure you are educated on your options. Let me throw some thoughts out at you.

A half matched (or haplo) transplant is not the ideal which I am sure you already know. A standard BMT requires hi-dose cyclophosphamide (chemotherapy) to wipe out your existing bone marrow, AND Total Body Irradiation (TBI) from radiation therapy to destroy your existing stem cells that produce bone marrow. Once your stem cells are eradicated by the radiation therapy, you are at the mercy of the new donor cells engrafting. Then the wait & see if any GVHD occurs. All of these combined are pretty tough on the body.

The MAJOR point is that your stem cells do NOT contain the code to attack your own bone marrow, the immune system does. So if you destroy the immune system with Cyclophosphamide, then you don't have to destroy the stem cells with radiation. Your own stem cells will eventually begin to rebuild your own bone marrow . . . avoiding any issues with GVHD, AND without going back to attacking your bone marrow.

This is why we chose Johns Hopkins for our daughter's treatments. They are one of the only hospitals in the world who are treating AA like a bone marrow transplant, but without new donor cells. We are VERY hopeful that the chemotherapy alone has not affected Kathryn's ability to have a family if/when she decides to have one. She is now 10 years old and back to living a completely normal little girl's life. The best thing about her treatments is that after she made it through her neutropenic phase, she was only on antibiotics for a short period of time. No other pharmaceuticals.

If you have any specific questions, please feel free to email bchenaille@comcast.net

One of the only ways we got through this time was from the love of family & friends, and Looking up and asking for His peace.

May you find peace in the midst of your journey!

[squirrellypoo]

Originally Posted by bchenaille

A standard BMT requires hi-dose cyclophosphamide (chemotherapy) to wipe out your existing bone marrow, AND Total Body Irradiation (TBI) from radiation therapy to destroy your existing stem cells that produce bone marrow.

This isn't necessarily true - TBI is only used in some transplants, but if it is used, it pretty much destroys any chance for you to have a child afterwards.

Ketiacakes, I totally feel for you, because I was the same age as you when I was facing my transplant last January, and having been recently engaged, we hadn't even started to go about planning a family yet! If there is time with your disease progression, your doctors may advise you to have a baby ASAP, or if you're in a state like I was where you'd be dead in 9 months without treatment, you may be given the option of fast-track IVF to freeze embryos (there's a much, MUCH better success rate with frozen embryos than with frozen eggs). My whole course of IVF, from the first injection through to the egg collection, took about five weeks and it means we can have some hope of having a baby in a few years, despite my transplant. And as it turns out, there's a possibility that my ovaries weren't as fried as previously thought since I only had a mini-transplant (lower dose chemo and zero TBI), but the gynae/endocrine specialist is still observing my hormone levels to determine that.

So my advice is to please speak to your doctors about this ASAP, and find out what sort of transplant conditioning they have planned for you, and if you are eligible for IVF pre-transplant. I'm afraid I don't know how it works in the US, but here in the UK the whole process was covered by the NHS because of my circumstances and not having any children already.