Can Someone Help?......

[DAWN82]

Hey Dawn,
I'm surprised the I/O hasn't been done yet, especially now during this "waiting period". I remember you mentioning the "areas of burnout" in the testis; however, you won't know that for sure until the testis is actually taken out and sectioned to see if there are any active cells. Radiological imaging has come a long way, but it doesn't compare to actually seeing the specimen under a microscope.

I agree, they should do some of these things now, while we are waiting.
I am hoping that they will not have to do high dose chemo. to see him have to do that would break my heart. it jsut sucks. 14! thats it! i know its serious. but, its soooo low compaired to what it was. its like a tease! things just cant go right, EVER!

I am just a little pissed, they are making him wait a month! yeah thats great, give the cancer time to grow back. i know dr's know what they are doing, but cmon!

[MRMRSU]

Hi Dawn: Feel free to vent here anytime! I can hear the frustration in your voice and for that I am so very sorry. I know it feels like nothing's going right at this moment, but just hang in there a little longer. I'm sure you are already, but be persistent with your doctors...you deserve to have your questions answered. Keep asking if it doesn't make sense...keep the debate and conversations open with them. It may help with the frustration you are feeling. Don't forget to take DEEP breaths...inhale happy thoughts of you and Brian ...exhale ugly thoughts of cancer . That may sound quirky, but it's what helped me keep my sanity these last few months! Regards to Brian...and I hope that you get the answers and news you've been waiting for. Best wishes in the upcoming days ahead!

[Fed]

Dawn,
I totally understand your frustration; waiting always sucks. At this point, you guys will have to rely on getting blood marker readings frequently to see if there are any changes (when is he having his next read). This also begs the question, once more, of the I/O... if there are indeed live cancer cells left in the testis, they could be responsible for any possible uptick in HCG provided the other masses are necrotic tissue.

You don't want to jump into a course of treatment if you are unsure that it's warranted. I would probably insist on the I/O. Maybe there's a reason for it not being done yet, but thus far, I don't think you have gotten a satisfactory one. If anyone else with an experience like this (delayed I/O) has some thoughts, please chime in.

[DAWN82]

Dawn,
I totally understand your frustration; waiting always sucks. At this point, you guys will have to rely on getting blood marker readings frequently to see if there are any changes (when is he having his next read). This also begs the question, once more, of the I/O... if there are indeed live cancer cells left in the testis, they could be responsible for any possible uptick in HCG provided the other masses are necrotic tissue.

You don't want to jump into a course of treatment if you are unsure that it's warranted. I would probably insist on the I/O. Maybe there's a reason for it not being done yet, but thus far, I don't think you have gotten a satisfactory one. If anyone else with an experience like this (delayed I/O) has some thoughts, please chime in.

That is our frustration! we dont know where the markers are coming from.
keep in mind, it has only been 3 months since he was diagnosed! and his #'s were seriously high, his #'s are at 14 which isnt the best, but they have come down slowly.

my fear is that the live cancer is coming from the liver
everything else at this point is operable, but they are concerned about the liver.

i hope it is all necrotic tissue in the liver.

anyone here had this experience?

[DAWN82]

Hi Dawn, My HCG lingered in the teens for quite a while. I was getting ready for HDC when UVA did one more blood test and it was >5. It couldn't get any closer then that. For what it is worth , I was living on apples and a prayer. I'll give you two one of them, Tim

what was making your HCG linger? when did they finally go down? or didnt they?

[Already Bald]

I would probably insist on the I/O. Maybe there's a reason for it not being done yet, but thus far, I don't think you have gotten a satisfactory one.

This seems to be the second case of a delayed I/O on these forums lately, and they both are at MSKCC. I am sure they are aware of what they are doing, and the delay is deliberate.

[DAWN82]

Hi all, just wanted to tell you all something i was told before......

Spoke to Dr bosls assistant (Mary Ann)earlier, from what she says, Brian is on surveilance? to see if his #'s stay stabalized. if they stay the way they are, he will have a blood test every month for a while. hopefully he wil not have to have high dose chemo . it sounds like what she said is that as long as the cancer markers are down or at the lowest point, he can be cancer free and still keep those dead tumors in his body.

Dawn

[TOP]

what was making your HCG linger? when did they finally go down? or didnt they?

My original count was above 300,000 and I was slow to respond. I started chemo at the begining of July and my counts went >5 Oct. 31. I have no idea why they lingered so long. I remember being at 50 for a while, then it dropped to the teens, then finally >5. Nerve racking, I know. I pray you and Brian can breath easy soon. Tim

[AdrianB1971]

.

There are a little chance that elevated HCG to be caused by low testosterone but .... in 99% of cases the cause is the presence of active cancer
My bHCG was only 10 at diagnosis moment. AFP=2, normal. And the source of HCG was few subpleural nodules [distant lung metastasis].

[DAWN82]

There are a little chance that elevated HCG to be caused by low testosterone but .... in 99% of cases the cause is the presence of active cancer
My bHCG was only 10 at diagnosis moment. AFP=2, normal. And the source of HCG was few subpleural nodules [distant lung metastasis].

I know that the HCG is from cancer, but, its down so low from what it was. he only had his last Bleomycin shot on the 7-26, so they might come down.

[Karen]

Dawn,
The level of HCG is dramatically lower than before chemo. Keep reading TOP's post on hovering at 50 and take comfort that this may be the case with Brian. No negative thoughts. When are the markers going to be checked again?

[DAWN82]

Dawn,
The level of HCG is dramatically lower than before chemo. Keep reading TOP's post on hovering at 50 and take comfort that this may be the case with Brian. No negative thoughts. When are the markers going to be checked again?

Brian is at 14 now, he is on surveilance so that they can decide wether or not he is going to have surgery. he goes this thursday for a blood test and then next thursday

[dannysbrother]

Dawn,

I think you will have a better idea about what's going on when he has the blood taken this thursday. Try to stay calm and wait this thing out as best as you can. Remember, Brain is being treated at one of the, if not THE BEST cancer center in the world. He is in good hands with the doctors and he is in great hands with you.

Hang in there Dawn,
Michael

[DAWN82]

Dawn,

I think you will have a better idea about what's going on when he has the blood taken this thursday. Try to stay calm and wait this thing out as best as you can. Remember, Brain is being treated at one of the, if not THE BEST cancer center in the world. He is in good hands with the doctors and he is in great hands with you.

Hang in there Dawn,
Michael

THANKS MICHAEL! I WILL TRY.....
JUST TO SEE HOW GOOD HE FEELS EVERYDAY MAKES MY DAY! WE WILL SEE WHAT HAPPENS THURSDAY. THEY SAY HE IS ON SURVEILANCE? I WONDER IF THAT MEANS, HE COULD ALMOST BE DONE WITH TREATMENTS, AND JUST HAVE TO BE CHECKED VERY OFTEN. YOU SAID DANNY HAS LIVER TUMORS?
DID DR. BOSL SAY HOW LARGE THEY ARE AND HOW MANY? THATS THE PROBLEM WE ARE FACING NOW. HE DOESNT KNOW IF THE LIVER SURGEON IS GOING TO WANT TO REMOVE THEM IN FEAR THAT BRIAN COULD BE IN DANGER DURING SURGERY. IF HE DOESNT HAVE HIS LIVER OPERATED ON, THEY WILL NOT DO ANY! SURGERY! I DONT UNDERSTAND THIS.....