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  1. #81
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    FG and Bella, best of luck for the infusion...envy at least you two will have the company for each other...let us know how you go...I hope this is the start of a string of BFPs...:-)

    Helen, have you had your appt yet? Hope all is going well.

    Kiwi, so sorry to hear your news. A break sounds good to gather your thoughts and re-group...enjoy it and don't be too hard on yourself!

    For everyone else, a big hello!!!

  2. The Following 2 Users Say Thank You to Earthpower9 For This Useful Post:

    Bella978  (27-09-2012),festivalgirl  (26-09-2012)

  3. #82
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    Thank you everyone for your good wishes! Bella I will see you there! I will be the panicked looking one running from the train station sure to be late! Dr M is giving me IVIG because in addition to CD56 I have TNF alpha as well.
    It will be great to meet you in person. Looking forward to meeting everyone else at some stage soon. FG

  4. #83
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    Hi girls,
    Festivalgirl and bella good luck with your infusions, I look forward to hearing about it.

    Just a quick update from me. I finally got my results back from blood tests and another phone call from Dr.M. Blood tests showed high prolactin levels, boarderline PCO and high lymphocytes, don't know much about lymphocytes? So he wants me to use clomid to get pregnant instead of IVF and if I get a positive then go to sydney for infusion. To say the least I'm extremely sceptical that this will work.

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    Bella978  (30-09-2012)

  6. #84
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    helenmac is offline After 3 yrs of tcc I've got a BFP!
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    Hi Ladies,

    I just did a long post to everyone and lost it all!!!! Grrrrrr.

    Gretchen - Fantastic that Dr. M thinks you can fall pregnant with Clomid naturally. There is another lady (Nat) that was told the same and it worked, she is now pregnant after years of trying. Wishing you all the best.

    Festivalgirl & Bella - How were your infusions? Did you end up seeing each other?

    Earthpower - In regards to the Humira. Your TNFalpha levels need to be tested before Humira commences and then you have 2 shots then another bt to see if the levels have decreased. High CD57 (high nk cells in the uterus) are closely related to high TNFalpha and Humira is THE drug to lower those levels. Some women flare on it then a further 2 shots is required and IVIG which should lower them further. You have to wait 2-3 months before IVF as Humira blocks all inflamation so waiting 2-3 months after the last shot more inflamation will come back as you need 'some' inflamation for a successful implantation.

    Kiwi - Hope you are going well and that you get some answers at your apointment with Dr. M.

    Satalite - Did you have a follow up BT? I hope everything is going well and those hcg number double beautifully.

    Hi to everyone else

    AFM: I had my apointment with Dr. M. He has given consent for me to have HUMIRA!!!! I'm so happy. I feel that this is what will give me the best chance for a successful outcome. We have negotiated that I'll only have a max of 4 shots (which is all I wanted anyway) and we'll monitor by local BT's which can show how I'm responding. I have to do the Chicago bloods first then local from then on. Also I need to have BT's to check TB and Hep B before anything commences. I can't wait to get the ball rolling. There's quite a delay with Humira but I certainly hope it's worth the wait!!

  7. #85
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    We are infused! Bella and I shared a room at Hurstville. It was so GREAT to have a lovely infusion buddy and to share our common experiences. The time went really rapidly for me.

    Weirdly, we were up in the maternity wing so were looked after by nurses and midwives.

    Nurses were all lovely and had experience with Dr M's treatment. I was given a bag of saline first and then Dr M loaded up my infusion. $2250 of IVIG just looks like 2 smallish bottles of water - one 200 mls and one 100 mls equivalent of 15 grams of IVIG. Dr M bought them in to the hospital himself and everyone was very careful with them. The nurses were great making sure that I got to use every last drop from the bottles and then washing through more saline through the line to make sure that every last drop of the IVIG went into me.

    I finished around 1.15pm and my husband came and collected me but I think that next time I will just stay there overnight as it is very comfortable and I was sleepy (as was he).

    Bella and I had a double room with our own bathroom and TVs. All fine and private. The nurses said that sometimes as many as 4 women are infusing on a Saturday or Sunday.

    My first ultrasound is on Monday (Day 11) so my next concern is producing eggs. One step at a time.

    Gretchen - congratulations, that sounds like a great diagnosis. Even if you do decide to go ahead with IVF and do it that way, it sounds like your immune protocol won't be too invasive! Brilliant!

    Helen - that is GREAT news for you about Humira!
    Does that mean that your TNF alpha can be monitored locally by Dr M through blood tests in Australia? I had thought I would have to send more blood to Chicago for that. Please let me know.

    Dr M says that the IVIG should give me 4 weeks of dampening down my inflammation - but he will revisit everything with me if I get a BFP.

    With great hope for us all. FG

  8. #86
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    Hi everyone Hope you're all enjoying the long weekend.

    My Intralipid Infusion went well. Thanks to all for the good wishes and positive vibes.

    Infusion was done at Hurstville where I was lucky to meet the lovely FestivalGirl. The time flew by as we chatted the whole time! As FG said, they first infused about 1.5L of fluids (2 hours) while we waited for Dr M to arrive with the good stuff! He hooked me up, came back about 15 minutes later to check that all was OK and then left. My bottle of Intralipid looked like a glass bottle filled with milk, 500mls. They infused it over about 6 hours, followed by another 300ml of Hartmann's solution to flush the remainder of the Intralipids through. I left the hospital at 12.15am but next time I'll definitely stay overnight to save DH driving in to collect me. I had no side effects, although I have been feeling quite tired all weekend. I think that's more from the IVF drugs than the infusion though. The nurses were great, really pleasant and friendly. The irony of the infusion being done in the maternity ward was not lost on us! Cost was $650 payment to Dr M (non-claimable) and my health fund excess.

    Helenmac - great news on the Humira. Be sure to keep us posted.

    Gretchen - I can understand you being skeptical about the Clomid, but from what I've seen/heard of Dr M he really knows his stuff. I'll keep my fingers crossed that it's all you need for your BFP.

    FestivalGirl - I'm so glad we got to meet! Good luck at your u/s tomorrow. for lots of nice follies. Hope you enjoyed your weekend - has the IVIG made you look and feel great as it did for your friend?!

    Kiwi- How are you doing?

    AFM - no public holiday sleep in for DH and I - BT & US #2 in the morning. First one on Friday showed 5 follies on R ovary and 2 on L, plus a couple of smaller ones. I've been feeling lots of niggles all weekend so I'm hoping that scan will show lots of growth and maybe I can have EPU on Wednesday.

  9. #87
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    helenmac is offline After 3 yrs of tcc I've got a BFP!
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    Hi Ladies,

    Thanks Festivalgirl and Bella for your detailed experiences with IVIG and Intripilids.

    To answer your question FG. I was under the same impression as you thinking I would have to send more blood over to Chicago to retest the TNFalpha levels after the first 2 shots. Dr. M said there is different test done locally (not actually testing the TNFalpha levels) but another test that will show if your body has responded well to the Humira or if another course (2 shots) is required. It's a cheaper way around it. Idealy I'd like to test it in Chicago but it's such a huge expense and I'm trusting Dr. M in that this other test is just as informative.

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  11. #88
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    Hello lovelies,

    Sorry I haven't been around much. I am currently 4dp6dt and feel pretty negative about the result. I know it's early but I have very clear pre-period symptoms. Waking at 4:30am every morning with the prednisolone and poor DH woke to me sobbing this morning. I had this same feeling last time (a bit later in the TWW though) and was right.

    BT is Monday 8th. I then have one CGH frostie left and don't know whether to go again with my FS protocol (just asprin and pred) or wait for a consult with Dr M.

    Sorry for the me post. I am following all your journey's and learning so much

  12. #89
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    Dear Scruffy,
    We all know your stress very well. I have my fingers crossed for you that this one works for you.
    In terms of what you might do next - I used my only frozen embryo re-trying the same protocol that had previously resulted in a chemical. Most of my stress now is that I have to produce an embryo to use this cycle (I only have 4 follicles so I am panicking). I WISH that I gone to Dr M earlier when I still had one in the bank. So much pressure would be off me if that were the case.
    Best luck to you and of course we will all be here to support you whatever you decide. Maybe you could make an appointment with Dr M just in case so at least you won't have to wait so long if you do decide to consult with him.
    Festival Girl.

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    Scruffy  (05-10-2012)

  14. #90
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    Hi ladies

    Have been MIA but stalking to see how everyone is doing.
    I have arranged to go and see Dr M on Friday & probably going to do another biopsy around the 9th which should give him the results to properly treat these immune issues of mine - especially considering my NK levels are so high....
    Im also up and down around whether or not I should do CGC PGD testing. I have been stalking a couple of threads which havent convinced me that its worth the $$....


    AFM/Scruffy I know you have gone down this path - I am seeking your guidance here? Is it worth it or should I just tackle my treatment with Dr M's help?? I have been on the Bondi Protocol with Dr S and have 2 Chems and 1 BFN since Jan this year from my full cycle. No more frosties so will be doing next full cycle with Dr S and Dr M. Dr S has suggest CGH but I just dont know...

    Shout Outs:
    Scruffy sending you positive love and light!
    Bella - Im doing good thanks for checkn in!
    Festivalgirl - hope your feeling good after the infusion - you too Bella!
    Helenmac - gee my CD57 levels seem way higher @ 50/mm Im really concerned now maybe I need to consider Humira as well, the only prob is that I have a genetic mutation for bowel cancer and I have heard that Humira can cause cancer so Im very wary because of my genetic disposition...
    Earthpower - I will probably doing full cycle at the end of the year Dec or maybe Jan - when are you thinking of doing your next FET?

    Hi to everyone else! Good luck and waiting for those BFP!

    Kiwi
    Last edited by kiwi77; 04-10-2012 at 07:02.


 

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