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  • So Scared!!!

    Not doing good..just got a call from lab that Chris' AFP was 13....different lab than he has been going to for a year....his AFP has been 2 for one year and now this.....plus he is taking Creatine? for weight lifting...we are scheduled to go out to Sloan Kettering next Thurs...Dr. Sheinfeld wants bloodwork there and now another cat scan...he is not happy with the creatine Karen said, and they don't want us to panic....different lab, things have been so good....help......please I need feedback...has this ever happened to anyone....can';t believe it..I am in shock...Mary Ellen

  • #2
    Hi Mary Ellen,
    Just read your post. Please, Please try not to worry or jump to conclusions. It could be alot of things.
    Did you say that Chris's doctor is not happy with the creatine? Please keep us informed. I am thinking of you guys. It's gonna be OK!!!
    jane
    Jane
    Mother of TC survivor.
    Son, Josh 20, diagnosed Jan. 24, 2005. Left Orchiechtomy Jan.31, 2005. 4XBPE March 7th to May 28th 2005.

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    • #3
      Mary Ellen;

      Just curious...at any time prior to Chris's treatment was his AFP elevated ?
      Sounds like the folks at Sloan are not taking any chances,with new blood work and a CT scan.

      Fingers crossed !

      For what it's worth..even after treatment my AFP has never dropped below
      12
      Dec/04-Right I/O-nonseminoma (95%E/C),Stage 1, surveillance
      Nov/05- 2.2 cm lymph node= Stage II A
      Nov/05 -Jan/06-3 x BEP
      Jan/06 -Surveillance



      ___________________________________________

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      • #4
        Mary Ellen, I agree with Jane, maybe its because its a different lab... etc. I can imagine how worried you must be right now, but take it one step at a time to see whats going on.

        -Kevin
        Diagnosed 10/03/03
        I/O 10/15/03
        RPLND 1/21/04
        Completed the Boston Marathon 4/19/05
        Completed the Boston Marathon 4/17/06
        Baby Riley born on 3/29/09

        2012 Livestrong Challenge Web page

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        • #5
          Thanks everyone...right now I can't type between the tears.....Chris is taking it all in stride, just went to work out...its like I'm back to a place I thought I wouldn't have to go to.....his blood work has never been higher than 4, last month 2...but he is on so many different supplements the last 8 days....creatine, protein powders etc...you name it...so I am hoping that had some effect...last month 2 was his lowest number....so please say a prayer...I wonder when we go to Sloan if they will get blood work back quickly....we meet with Dr. S at 9:15 on Thurs...his last cat scan in Dec was perfect....I can't even think right now if Chris will need more chemo...they told us he was agood cure candidate...low AFP at 84...had RPLND..now this.......thanks for listening...Mary Ellen

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          • #6
            Easy to say and tough to do, but try not to panic. I hope it's just a scare. We'll be waiting anxiously to hear more.
            Scott, [email protected]
            right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


            Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

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            • #7
              MaryEllen, I know how hard this is for you but there are too many variables going on here to jump to conclusions as someone has already said. Please don't show Chris how upset you are. Stay strong. We'll all be praying for the good news. Dianne
              Spouse: I/O 8/80; embryonal, seminoma, teratoma; RPLND 9/80 - no reoccurrence - HRT 8/80; bladder cancer 11/97; reoccurrence: 4X
              Son: I/O 11/04; embryonal, teratoma; VI; 3XBEP; relapse 5/08; RPLND 6/18/08 - path: mature teratoma

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              • #8
                Thanks all...the kind words help....I am trying to not show Chris, but he knows....I wonder why Sloan won't let us have one more test here in a week, then a cat and blood there...its a ten hour drive up and back, but I know Dr. Sheinfeld is very careful, so, we are just going to have to head up...Chris isn't happy, wants to do bloodwork here.. I will keep you posted...Mary Ellen

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                • #9
                  Mary Ellen:

                  Sorry to hear the news and hopefully everything will turn out OK. Try to think positively. These tests are not foolproof and errors do occurr. I'll keep you all in my thoughts and prayers.
                  Fish
                  TC1
                  Right I/O 4/22/1988
                  RPLND 6/20/1988
                  TC2
                  Left I/O 9/17/2003
                  Surveillance

                  Tho' much is taken, much abides; and though we are not now that strength which in old days moved earth and heaven; that which we are, we are; one equal temper of heroic hearts, made weak by time and fate, but strong in will; to strive, to seek, to find, and not to yield.

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                  • #10
                    Mary Ellen,
                    I'm sorry to hear that there was an AFP blip and I pray it's nothing more than an artifact from the supplements. We're pulling for you and for Chris. Stay strong and positive.
                    Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

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                    • #11
                      I/mtrying, but this time almost seems harder than the first time...I thought it was smooth sailing...perfect blood for a year and now to see fear in Chris' eyes again is too much for a mother to bear...Mary Ellen

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                      • #12
                        Marry Ellen,
                        The hearts of all us Moms are with you. Hold onto the hope that the supplements Chris has been taking are the culpret. There are several over the counter meds that can have an affect on AFP levels and there is a chance someting in the supplements can to. I hope Chris stopped talking them at least for the sake of this next test. He may want to bring a listof all he's been taking as well or copy the labels. When Ray met with the onc radiologist before his zaps the doc relly pressed him hard to be sure he wasn't taking any supplemets. He told a story of treating a man for head/neck cancer and the guy was getting skin burns from the radiation that were much more severe than would have been anticipited. The doc kept asking him what meds he was taking, and none would explain the burns. At another appointment his wife went with him and they had the same conversation. Turns out his wife was giving him various supplements with his regular meds in the morning and one was shark cartilage...and that was known to increase radiation burns. Sorry to ramble....just want to illustrate that things we put in our bodies can have unexpected effects. The waiting is the hardest part. Keep in touch with us, we're with you.
                        Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

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                        • #13
                          Thanks for the encouragement Karen.....Chris did read in the book he has on weightlifting and training, that you can get a false postive on some bloodwork when you are taking creatine....can affect kidney levels or liver or something...so we will hold on to that hope...its just funny that he starts taking creatine for the last week or longer and then this happens. He already is saying he will not go on anymore more chemo which is scaring me....maybe we are jumping the gun, but you have to face the worst....what a miracle it will be if levels go down next week, but creatine stays in your body for four weeks after starting it he read...we are taking all the supplements to Dr. Sheinfeld on alist just as you mentioned.....have a good weekend...and we will keep all posted.......I have a special Saint I pray to..in my religion it is St. Anthony, who you pray to for miracles.. and we need one.....so I have hope....Mary Ellen

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                          • #14
                            maryellen,
                            my-space-bar-on-my-computer-is-broke-so-bear-with-me.
                            i-have-been-thinking-about-you-all-night!...i.know.the.fear.you.
                            said.in.chris's.eyes.and.how.horrible.you,as.a.mot her.feels.
                            i.have.been.praying.and.saying'hail.mary's'.for.yo u...since.i.read.your
                            post.yesterday...and.will.continue.to.pray.for.you .and.chris.
                            maryellen.i.have.faith.that.everything.is.going.to .be.ok.
                            i.just.feel.it....i..wish..i...could..be...there.. to..give..you..a..big..hug.
                            jane
                            Jane
                            Mother of TC survivor.
                            Son, Josh 20, diagnosed Jan. 24, 2005. Left Orchiechtomy Jan.31, 2005. 4XBPE March 7th to May 28th 2005.

                            Comment


                            • #15
                              Jane, our young sons went thru this together..and so did you and I. Thank you so much Jane.....the support from you and everyone here is so appreciated....you all understand......we have been reading alot....and just hoping for the best...Chris may get bloodwork up at his usual lab on Wed. and we will see what that shows....if good, we are not going to NY, otherwise, we will head up and see what to do...what a gift it will be if ok, last summer we did not go on vacation because of Chris surgery, so we hope we can celebrate with family after bloodwork in Cape Cod, thanks for the prayers Jane, I know you are there for us...give Josh a hug...Mary Ellen

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