Decreasing HCG increasing AFP Concern

[SuzanBee]

I posted a little over a month ago about my son (age 20) who has Stage IIIA Testicular with the PE and DVT complications. He has completed his 3XBEP last week at IU. He also had his CT scan last Friday and based on the results we have scheduled his RPLND (which we thought he would need from the beginning) for May 23rd...also at IU. The first bit of good news is that his PE's have resolved and the DVT's are getting better. The other good news is that his bHCG has gone from a pre-chemo start of 87 down to .7 and has dropped every time. His AFP started at 225 and had dropped to 5.7 after his second full round of BEP...however it is now up to 8.2. IU considers 0-25 normal, but I am concerned about it rising over 40% after it had dropped. Has anyone else experienced this and what were the outcomes? BTW his biopsy after the orchiectomy was 90% EC and 10% Teratoma. I thank everyone on this forum for all of their support and posts, it has really helped me cope with this experience.

[biwi]

I would not be concerned at all about that AFP level, you sound like you on the right course! It is within the normal range and can sometimes fluctuate a little as dead cancer cells decompose in the body.

Just curious, with the low markers, what bumped him from 2c to 3a staging?

[AZMom]

Hi SusanBee.

I'm relatively new here, but I also have a 20 yo son who was staged IIIA, and his tumor was also EC (with focal teratoma). He's currently finishing his third round of BEP- final bleo will be this Monday. His AFP went from 2.2 after cycle 1 to 4.4 after cycle 2, and 3.9 for cycle 3. His oncologist didn't say anything about the small fluctuations.
I'm sure others with more knowledge will respond. Best wishes for your son's upcoming surgery.

[SuzanBee]

biwi...he is 3a because of lung metastasis...he still has some nodes but there are much less and the ones that remain are much smaller...and thank you for the AFP info. AZMom...best wishes to you and your son as well as he completes this chemo. My son was diagnosed while in college too...luckily he was attending Butler in Indianapolis...the right place to be for this. I just noticed the date...February 9, 2018...that is the same exact date as my son (I'll never forget the worst day of my life)...unbelievable...made the hair stand up on my arm. Same pathology too.

[Mike]

I agree that a small fluctuation in the AFP is most likely of complete insignificance and the AFP has responded well to the chemotherapy. Your son is in great hands at IU.

Mike

[Trekga]

Not uncommon for any tumor marker to fluctuate, as long as it is within the normal range of lab, no need to worry. Wishing your son the best with his post chemo RPLND.

[AZMom]

SuzanBee,

More than you know. We just found out today that my son has pulmonary embolism. I'm still a little rattled because the signs were so subtle and easy to miss. He had elevated pulse last week, and nurses thought it was a little dehydration. Yesterday, he had some shoulder pain but no swelling, and we called the on-call nurse and concluded he just slept on it wrong. Last night, he complained that while laying in bed, his chest felt full and he felt like it was hard to breathe for a minute or two, and his jaw felt numb for a moment. He took some antacids and managed to go right back to sleep and felt fine, but it nagged at me and we called about it. The doctor didn't think it was an emergency, but saw him in the morning and ordered a chest CT today, and it turns out he has PE. He said it was bilateral and there are multiple clots, but he didn't have the full radiologist report yet,. He gave my son a shot (Lovenox?) and he has to start taking Eliquis tomorrow. He can still do his final bleo on Monday.
I'm so grateful that you posted yesterday. Your son was on my mind when my son had symptoms last night. It was so brief, we could have easily brushed it off as heartburn. The doctor says he must have had this for a while, and we had no idea. You might have saved his life.

Again, thank you. It's so strange that the experiences are so similar. This board is such a gift.

[biwi]

I am on lovenox right now for 2 weeks to thin my blood after a completely unrelated surgery (broke my tibia/fibula and it needed a rod and screws). I have heard of others here being prescribed it after clots as well. For me it is a self administered shot done daily to my abdomen. Actually really easy and not painful, just a tiny poke.

[SuzanBee]

Mike and Trekga...thank you for the reassurance. I'm not sure what I would do without this forum. AZMom...I'm so glad the clots were caught. We waited too long with my son...he complained of leg pain after his orchiectomy (we knew he had PE's and was taking Lovenox...but had to stop prior to surgery)...ended up with Interventional Radiology "sucking out" clots in his inferior vena cava and placing an IVC filter...very scary. You are very correct..this board is such a gift.