Looking for some help, advice, and encouragement

[JoeTheAstronaut]

Yes, chemo is scary, especially to begin with, but in my experience it becomes easier with each round - you know what to expect, how to manage your energy levels etc. Just stay away from crowds and when you have any side effects, immediately tell the nurse and/or oncologist!! Nurses helped me a lot and so did this forum

[Davepet]

3xBEP is *HIGHLY* effective, there is little doubt you will beat this. The port is a good idea IMHO, I don't think I've seen anyone here who regretted getting one, even those that ended up with a blood clot like me. There is nothing to be afraid of, it won't be fun, but then, war never is. Keep us posted as you progress & ask any questions you have, we will have your back as best we can.

Dave

[Trekga]

So sorry, please keep us updated. It goes to show you that so many dismiss LDH #, but if the value was normal and rises, it can be indicative of relapse. Wishing you the best, stay hydrated as possible by mouth during chemo.

[Mike]

I’m just curious how it was not seen in August. Could something like that really grow that quickly?

I bet that because I waited from 2014 until late 2015, I allowed that thing to slowly migrate in me. I knew something was up with me back in July of 2014, but I did nothing about it because I tried to convince myself it was all in my head, and I did not want to risk losing my opportunity to fly (I was right at the time getting my first flying gig, which I had worked so hard for and sought all my life).

If I were to guess, you may have been receiving just an abdominal CT and not an abdominal-pelvic CT in which they would have seen this pelvic involvement. Pelvic relapses are pretty rare with seminoma but can occur. Many facilities and surveillance protocols do not routinely image the pelvis because of the rarity.

If this was a node higher and thus in the retroperitoneum and if it was a bit smaller then there is a study looking at RPLND in early stage 2 seminoma. However, to my knowledge, a pelvic node-disection, unless done in concert with an RPLND post-chemotherapy, isn't really done and especially not for relapse of stage I seminoma on surveillance.

Mike

[aerobadger]

Mike, the scan I had done on August 2, of 2017 was and abdomen and pelvis. The bottom of the report noted:
“‘No evidence for metastatic disease in the abdomen or pelvis.’”

Flash forward to December of 2017, hGC was up to 7/6ish with just clean abdomen (only) done. Further research through a follow-up PET (after more blood samples) said:
“‘ABDOMEN/PELVIS: There is a large soft tissue of density hypermetabolic mass in the right hemipelvis, likely representing an enlarged lymph node mass within the external iliac chain. This measures 5.9 x 5.3 x 7.9 cm with an SUV max of 8.18. This is concerning for metastic disease. This lymph node mass extends from the inguinal canal through the pelvic brim at L5-S1 level. No additional areas of hypermetabolic activity are noted separate from this dominant soft tissue mass. No additional lymph nodes are appreciated.’” I saw images of it and it’s actually right around my incision from my 2015 right i/o.

Is it possible that the reason it was not seen was because I was not drinking the oral contrast in August? It was always just the IV that was done because, as I understand it, my Urologist said I did not need the oral contrast for what he wanted to see.

It just bothers me that something that big manifested in four months. I honestly did not think seminoma acted like that.

I had continued dialogue with Einhorn and he agreed with my treating physician that 3xBEP will have ‘”very close to 100% probability for cure’”. I’’m just praying and hoping.

I had my port installed today. This is all becoming so real, but my nerves are not any more relaxed. It really helps talking to you all about it. The encouragement has been monumental.

[MamaAng]

Hey there Aero, just finished your thread and wanted to wish you the best of luck as you head into your chemo. Do you have a partner or close family member who can buddy up with you during your treatment? It's a huge benefit to have someone, or a team of someones, to keep you company. Spend zero time rehashing why or how and instead focus on now. Get some good reading material or research what shows you can binge. Eat what makes you happy and accept any and all help offered to you. Start a Facebook page and invite people to follow your journey. The point is to try to keep your mind busy to help combat your anxiety. And tell your nurses if you're feeling super nervous, they can help. What you're feeling is totally normal and it sucks that you're going through it. BUT you WILL BEAT IT! If Dr. E. says so....it's money. You've got this..... xoxoxoxoxo

[Ann]

Hi Aerobadger -- may the force be with you as you start your Chemo. My son just finished his two days before Thanksgiving. If I could give you any advise it would be, go in with an open mind. Positive attitude and know your going to get through this. Stock up on lots of drinks be it water, Gatorade, juice, and more water. Get outside everyday, even if it's a walk down the driveway and back. Tell the nurse or doctor any issues or changes that you may experience. Even if it seems like nothing. Ple

[aerobadger]

Well, I finished my first week last week and tomorrow I have one shot of BLEO.

Quick question- So they did a blood draw today to “check “under the hood”” as they told me they will do every week now (so they can supplement things if and when things get off a bit), so that’s situation normal I guess, but they also did do a new marker check. I have an appointment at the end of the week with the doc to just go over my progress thus far, but I can see that the newest LDH and AFP numbers in the online patient portal I have access to. LDH went down a bit from 325 on 12/19 to 267 from a sample today. However, my AFP rose from 2.4 on 12/19 to 4.2 from a sample today. The newest hCG comes in sometime in the middle of this week, but I am wondering if this is normal (to see a rise in AFP). In all my years of active surveillance, I am not sure it has ever went that high. That being said, it seems relatively low in the grand scheme of things.

I am trying not to google too much, but I am looking for incite (and also ease my one million fears). My initial assumption tells me that an AFP increase after starting treatment may be somewhat normal?

As for how my first week went, it started off okay, but yesterday (Sunday), I felt like an absolute waste. I ended up spending almost all day in bed. I feel like a wuss! Also, either the anti-nausea meds or the chemo or BOTH have me blocked up! I feel like the top half of me is made of concrete and it is a challenge trying to get my bottom half of me to do its job and process what I bring in (TMI!).

[Davepet]

The weekend after the long week will always be challenging, and be aware, it tends to be a bit worse, and take longer to recover after each long week. I think it was Wednesday of week 8 before I started feeling better (after week 7). You are not being a wuss, this crap knocks the sh!t outta you!

Many on here used stool softeners, but make sure to run it by your team first.

Dave

[biwi]

Also, that AFP number is in the normal range and nothing to worry about.

[Mike]

I am not even sure why they would be drawing tumor markers after your first long week. With the first round interpretation of the markers can be very challenging as it is not abnormal for the levels to increase due to destruction of the cancer cells. Regardless, I would not be concerned at all if those were my numbers as the AFP, as noted, is completely normal.

Mike

[Davepet]

I forgot to address the markers in my last post, but an increase is indeed fairly common as cancer cells are killed off. Also, it is pretty uncommon to test markers that often during chemo. I seem to recall once per cycle, but it might even have been less.

Dave

[aerobadger]

Hey everyone, I hope it's okay if I bump this.

I finished 3xBEP during the first week of March. I am mostly surprised that the whole experience was not as nightmarish as I had expected (reading through the internet can be scary). There were some rough days, but overall, even my rough days were not as bad as I had feared going into it. My worse cycle was actually overall probably the first one. I did have annoying symptoms throughout two and three, but it just was not as flattening as I worried (which made me, if anything, wonder if the stuff was even working). I just ran two miles today, three weeks after my last bleo!

My question is regarding my initial tumor size. The PET I had done in December rounded it to 5.9 x 5.3 x 7.9 cm which I understand is pretty large. My blood post-chemo went to undetectable with hCG, 2.5 AFP, and 187 LDH. Pre-chemo they were 7 hCG, 2 AFP, and 325 LDH. I know the numbers that matter (mostly hCG) went down, so something happened. My question, however, despite the size of the suspected bulky tumor, are my chances still good for the chemo killing all the live cancer cells? I guess I'm thinking of it as if it were a teaspoon of ice cream put in a microwave and cooked for 30 seconds, it would be melted, whereas taking a scoop of ice cream and putting it in for 30 seconds will reduce the size, but it'll still be there. Is that analogy very relevant regarding seminoma, or is that kind of irrational, uneducated, and pessimistic thinking?

I know the outcome is likely that there will be dead residual mass/tissue there and it'll either be all dead tissue that shrinks over time or mostly dead tissue with live cells still there. My doctor has elected to wait until mid-May for my first post-CT (around two months since the completion of my 3xBEP), and I'm just hoping that what is found is all dead stuff. Is that still the most likely scenario, despite the fact that it was a hefty tumor?

Thank you always for your time and your responses. Everyone posting has helped give me some peace thus far. I'm just going through some post-chemo anxiety.

[biwi]

So I'm no MD, but I *think* the cancer masses need bloodflow to live and grow, just like other cells. So unlike your microwave scenario, the medicine acts on the mass not from the exterior only, but throughout the mass.

Chances are good that your scans will be good and you will be on to surveillance.

Also, yes everyone's chemo experience varies. I read the people on here who say 1xBEP was the most difficult thing in their life. And to me, my first round was a walk in the park, I think I even did take actual daily walks throughout my first round and went right back to work (desk job) on non-infusion days. I was also 32 and in moderately physically fit. My rounds got progressively tougher. The 4th round was killer, major fatigue and some difficulty keeping food down and no taste or appetite.

[Davepet]

Seminoma rarely survives 3xBEP. Have faith in your treatment.I believe it helps.

Dave