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Finding a Gestational Carrier...


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#1 bshantz

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Posted 01 September 2012 - 08:15 PM

I was diagnosed with CML about 5 months ago at age 28. The same day I was diagnosed they told me I was pregnant. My husband and I had been obviously dreaming of having a baby, and never dreamed it would turn into this. I was a little over a month along, and due to all that was going on in my body the baby already was not doing good. Unfortunately, our sweet angel baby didn't make it and now here we are on the search for a gestational carrier. Obviously, being on Tasigna I can no longer carry a baby and after many long discussions with my doctor, specialists and my husband we have made the decision for me not to come off the medicine to try to carry a baby. For us, I think the safest option is to start on the road to finding a gestational carrier. We met with a reproductive specialist, who says my eggs are good and has an 80% success rate. So we have our egg and sperm, just need a wonderful woman willing to give us our world. Which puts us on the hunt for a gestational carrier...

Does anyone know where to even begin looking? Our doctor basically said it was up to us to find our own. Unfortunately, we have no siblings that can do it for us and I hate just starting the search on an online database. I just feel like maybe somewhere out there, there is a group of amazing women willing to help out women with cancer who can't carry their own babies. Does anyone know of such a group or how I could find out? Or does anyone know how we begin the search?

Thank you for your suggestions and help, as this is a whole new world for us. Never in a million years did I dream I would have to search for someone to carry our baby for us, but never in a million years did I dream I would have CML either...but here we are.



#2 Susan61

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Posted 01 September 2012 - 09:38 PM

Hi:  My niece does work at a hospital with genetic testing and counseling couples.  She is in research also, but I do not know the extent of what she does.  She might be able to give me the information that you need.  Actually, I just attended her wedding last weekend.  She is away on her honeymoon, but I am going to get in touch with her next week when they get back.

I will ask her how you should go about this.  She might have some answers for you.  Not sure, but its worth the try.

We have had some young women diagnosed with CML on here, and they naturally were not going to try to get pregnant well on their TKI drug.  Maybe they will read your post, and let you know what they decided to do.

Just make sure you search out the right way to go with this.  I will get back to you when I find out something.

Susan



#3 CallMeLucky

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Posted 01 September 2012 - 10:37 PM

I have two co-workers who both used surrogates (not the same one).  I will see if I can find out any information and let you know.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#4 bshantz

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Posted 02 September 2012 - 08:52 AM

Yah! Thank you both SO much!



#5 hannibellemo

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Posted 02 September 2012 - 10:24 AM

Hi!

I'm sorry the font is so small, I'm typing from my iPad and when I try to use advanced editor it flashes up and then disappears.

I have an acquaintance that has been a gestational carrier in the past, I don't know her criteria for selection but with your permission I will show her your e-mail. I will let you know what she says and if she's interested I will put you two in touch. I will let you know one way or another. If it isn't something she is willing to do, perhaps she can give you some solid advice on how to go about your search.

I'm so sorry for your loss! I'm so sad for all of you young people just starting out in life and having to deal with this disease, too.

Good luck,

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#6 bshantz

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Posted 02 September 2012 - 11:07 AM

Yes, that would be wonderful if you could pass along my info. Bethany.shantz@gmail.com. Thank you so very much!



#7 Happycat

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Posted 02 September 2012 - 04:06 PM

Bethany,

I'm so sorry you lost your baby. My condolences to you. I have been there, too, and it's an awful place to find yourself.

I had to do IVF to get pg, many years ago, before the CML. I joined a wonderful online support group called INCIID. They have a section on their site for surrogacy, 3rd party options, etc. I suggest you try going over there for info.  The web address is below.

http://www.inciid.or...page=thirdparty

INCIID is great for information. They also have discussion boards where you can talk to people who have or are going through the same issues. Check it out.

My very best wishes to you,

Traci



#8 bshantz

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Posted 12 September 2012 - 10:54 AM

Thank you for your help! We have actually found a carrier (yah!) and now my reproductive specialist is trying to do more research on women on Tasigna's quality of their eggs. It seems there is no data, since Tasigna is Pregnancy Category D, on the quality of the eggs and little data on women carrying babies. Obviously, we are looking more for data on just whether my eggs are still okay or not. He said the only way to find out was to go through the whole IVF process and harvest my eggs, and only then could he determine if they were usable or not. However, if we do that then we have paid ALL the money for the IVF, the carrier, the lawyers, etc (approx $50,000) only for my eggs to possibly not work. Which seems to set us up for a VERY big disappointment and a VERY big financial loss. Not to mention dragging my carrier through the whole process as well. We could do a "trial" run to see how my eggs are but that alone would cost us around $12,000. Does anyone know of any doctor or researcher who might have data or information on this that could be shared with my doctor?



#9 Happycat

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Posted 12 September 2012 - 04:32 PM

Bethany,

I'm glad to hear you found a carrier!  That's significant progress. Regarding the use of tasigna while going thru IVF, I'd probably run that past a CML expert. They will have the most familiarity with the drugs. You would want to know of any effects on DNA, but you would also need to know if there are any hormonal impacts. You need to get decent estrogen levels in order for the eggs to mature properly. So you need to know about potential feedback loops between tasigna and hormones. I know IVF is super expensive and you can only afford so many attempts. Thus, I think it best to contact an expert in CML. I have heard the Dr. Druker at OHSU will respond to emails, and also Dr. Cortes. Others here can give you names of other experts who may be able to help.

HTH,

Traci



#10 Trey

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Posted 12 September 2012 - 08:48 PM

Have you considered a 2 stage approach: 1) beat back the CML to a very low level (2 - 3 years), then 2) stop drug therapy to have a baby.  You would be about 31 years old, and would seem to have enough time.  It would eliminate a whole host of downside issues associated with the other approach.



#11 Happycat

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Posted 14 September 2012 - 07:22 PM

Trey does have a point. Some women who find themselves pg with CML go off the TKIs and take interferon throughout the pregnancy. You'll feel like you've got the flu the whole time, but it would allow you to carry the baby yourself. This has definitely been done. You could use assisted technologies, like an IUI ( artificial insemination), just to help get you pg faster. The IUIs are much cheaper, and you don't have to load yourself up with strong infertility drugs.  (There is a risk of ovarian hyperstimulation, and as young as you are, it could easily happen.). But you'd have to be willing to wait until the CML is under control, and then put up with the interferon.  You'd also want to know there are no problems getting pg otherwise. If you got pg within about 6-12 months on your own, there probably isn't a problem there.

The hardest part is putting off having kids for a couple of years. But it is an option for you. Something to think about.

Traci






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