Anthony update

[mstlyn]

Here are the ref. ranges for 3 different places we have used.

Hurley:
AFP <5.5 IU/mL
HCG less than 25 MIU/ML <<< I question if this is supposed to be 2.5 but if so the . is not visible

U of M:
AFP 0.0-7.9 NG/ML
HCG <2 MIU/mL

Mclaren:
AFP 0.0 - 8.0
HCG 0- 10 MIU/ML

[Fed]

I always hear different opinions on what the "normal ranges are".

Just to clarify: the ranges depend on the assay and on the laboratory. When you get a quantitative lab report, one should also get alongside the ranges they consider normal. They are not consistent across the board, so everyone should keep this in mind.

[Russell's Mom]

I found myself holding my breath!!!!! It always takes me a couple of days to come down from the anxiety, even with the good news!!! Enjoy! Sharon

[Margaret]

Tammy,

It sounds like the AFP is stable. In the lab here at DFCI, the normal range is from 0 to 7.5, so things seem to be looking good. Keep at 'em! All the best to you and Anthony,

This is good news Fed....I always hear different opinions on what the "normal ranges are". I should check my cancer book.

I know you must be frustrated and a bit ticked off!! I would be.

Boyce is doing okay...I am going to post in the next few weeks once we hear the final outcome of things. Thanks for asking!

[Fed]

Tammy,

It sounds like the AFP is stable. In the lab here at DFCI, the normal range is from 0 to 7.5, so things seem to be looking good. Keep at 'em! All the best to you and Anthony,

[TCLEFT]

I called the oncologist again a few minutes ago. They STILL had no AFP results in thier office after 2 weeks.

I asked the nurse to call the lab though and we got the result

AFP is 7 as of Oct 4th

Looks like Anthonys normal range I guess??

So as of August, his chest CT was clean
October his abdomen and pelvic CT was clean

Oct 4th Markers

HCG <1
AFP 7

Lookin good.

Glad to be done with mclaren doctors. The next markers will be done with Hurley doctors, so we won't be dealing with this shameful lack of professionalism, and care.

Absolutely Fantastic. It'll be good to shed the angst from dealing with boneheads too. Great news!

[mstlyn]

I called the oncologist again a few minutes ago. They STILL had no AFP results in thier office after 2 weeks.

I asked the nurse to call the lab though and we got the result

AFP is 7 as of Oct 4th

Looks like Anthonys normal range I guess??

So as of August, his chest CT was clean
October his abdomen and pelvic CT was clean

Oct 4th Markers

HCG <1
AFP 7

Lookin good.

Glad to be done with mclaren doctors. The next markers will be done with Hurley doctors, so we won't be dealing with this shameful lack of professionalism, and care.

[mstlyn]

Thanks for all the love and support everyone .. I am pasting this post from another area to keep Anthonys updates right here. -
----------------

Hi Margaret,

Thanks for asking about Anthonys markers. We've had one heck of a time with the new labs.
The last marker results that I know about were from the first week in September, which was still in the 7 range.

I took him to have the markers checked again on Sept 13 and again around 2 weeks later. I kept calling the doctors office for the sept 13 th results and they kept telling me they werent back. After 3 weeks and yet another marker check, the results were still not back.

I told the nurse they needed to find out what was going on at the lab- finally I got a call from the doctors office only to find out that for those 2 marker checks, they didnt even check his AFP, only the HCG.
Needless to say I was furious, and when I took him for the latest one which was oct 4th, they were apologetic about it, and made sure they had his orders open so they tested everything they were supposed to.

Now I still don't have his oct 4th results. I called them 2 days ago and left a message asking them to call me with the results, or get in touch with the lab if they didnt have it. No one bothered to call us back .. I called and left yet another message today, and have not heard a word from them.

We just changed doctors again. Went back to hurley physicians instead of Mclaren .. we were better off where we were in the first place.

So we dont have any marker results for 5 weeks now, but the last few were in the 7.4, 7.3, 7.1 area.


Sorry this is so long

I have wanted to vent about this several times and decided I didnt feel like typing all of it. You made me do it!!

How are things with you and Boyce????

Hugsssss

[Already Bald]

but yes, the night ended with good news, so I'm happy.

Wow Tammy, What a tense night you must had.
I'm thrilled to hear that the night ended in good news, and sure hope this doesn't happen again.
Thanks for posting, and thanks for the advice for all of us RPLND'ers.
Best,

[Fed]

That's wonderful news, Tammy! Definitely worth celebrating!

[mstlyn]

Thanks for all the love everyone. Anthony is feeling a lot better today, back to eating normally and everything.
He said the pain was similar, but not as intense as when he had illeus after his RPLND.
I'll never forget that .. it was heartbreaking to watch and not be able to do anything. He didn't know what was happening and thought he wasn't going to make it.
He knows that similar symptoms mean a trip to the ER, as the doctor there said, he will be admitted next time.
It seems like these tentacles would have shown up on the scan if they exist .. I guess we may never know what happened, but yes, the night ended with good news, so I'm happy.

Thanks again everyone.

Hugs to all!

[Karen]

Great news on the CT Tammy! Hope the discomfort is behind Anthony

[TCLEFT]

Tammy,
The fluid would probably be edema. It's what causes swelling. Great he didn't have any. Adhesions (tenticle like scarring) can occur in many surgeries so keep an eye on that. Believe it or not some yoga type stretching might help. Check with the Dr, first. As for the CT, I gotta tell you "All Clears" really bring a tear to my eye these days. Fantastic news!
David,
If you're ever "low" get a Family fix. I do all the time.
Love, Cheers, and more Love,
Mark

[sldl1106]

I was surprised about Anthony's symptoms and the ER visit, but what great news! A very, very clean scan!! That was worth the trip, maybe?!

Maybe the ER doc could suggest an onc??

[Margaret]

Great News. I am just going to go and see my oncologist and was a bit down, but this good news has helped.

Hang in there David, we are pulling for you!

hugs