Crowds during/after chemo

[Addictedangel]

My husband was recently diagnosed with tc, we are curious what your dr.s told you about being in crowds during bep chemo and how long after until you could be in a crowd.

They haven't decided how many rounds he will need yet, and we plan on going to a convention followed by a family reunion in November.

[DoubleZero]

The main issue is your husband's immune system. This will crash during chemo and as such puts him at risk from basic infections which he won't be very able to fight - and that can be dangerous. I know of 2 / 3 people who had to be emergency hospitalised because of that. But on the other hand, there are a lot of people who continue with some / much of their daily life. Surf this board long enough and you will find many who kept up their studies/college/school.

My choice was to keep away from as much of the general public as possible. I still went out, but tried to stay away from people / enclosed spaces.

[JoeTheAstronaut]

I stayed out of work and places with lots of people (work, trains, restaurants) during chemo and I was fine. 3xBEP is 9 nine weeks and that wasn't a problem for me... But it's up to you of course! A mate with TC went to a wedding and he was OK.

[biwi]

The other factor is nausea and energy. During the 2nd and 3rd round he may not have the energy or desire to go to a convention/reunion anyway. I know my 3rd and 4th rounds it was pretty much all I could do to force myself to get up off the couch and take a walk around the block. There was no way I was going to a convention during round 3 or 4, even if I wanted to. The first 2 rounds I had more energy, but I still tried to avoid crowds and was extremely diligent about hand washing, germs, etc.

[DoubleZero]

Ha biwi... I'd forgotten about the "old man shuffle" I used to force myself to do "walking" my dog during my 2nd and 3rd rounds! And you're right (at least for me) - that was pretty much all I could manage.

[Davepet]

Please describe your husband's case. Is it already certain he will need chemo? (IE, his CT scan shows enlarged nodes)

If so, whether it would be a good idea to be in large groups depends on the timing of his chemo vs the event. If his white counts are low, it's probably best to not chance the event.

Dave

[Addictedangel]

His pathology report says :

10 cm mixed germ cell tumor with extensive area of hemorrhage and necrosis. Spermatic cord not involved.
Testicle moves freely and appears intact.
40% embryonal 60% yolk sac, involves tunica albuginea not tunica vaginalis, Margins clear, no lvi, no regional lymph nodes. Possible epididymis. Difficulty differentiating solid variant yolk sac from embryonal , the estimated volumes of the two tumor types are somewhat subjective.

His pre-op (7/24) markers:
Afp 4759
Hcg <1
ldh 258

7 weeks post op (8/28)
afp 11.8
hcg <2
ldh 138

all scans (pet-ct, ct chest abdomin and brain) all clear
oncologist said 1 round for sure, wasn't happy with afp still being high so will tell us on 9/20 wether it is 1a or 1s, which determines 1 round or 3 rounds

[Trekga]

Sorry to welcome you here Crystal. First, glad his numbers went down after Orchietcomy, and intial CT Scan was normal. If your Dr. draws blood at the 9/20 appt., also ask about another CT Scan if AFP has not normalized. Only sharing as my son orginally had an intial clear CT same timing, his markers (all of them) were not normalizing 4-5 out, and repeat CT Scan showed spread.
Praying that the AFP has dropped further.
Anyway, during chemo if a patient becomes Neutropenic (low WBC) than viruses, bacterial infections, etc can really do a number. If your husband's counts are not extremely low, than he can wear a mask and avoid handshakes, etc. Your Oncologist should advise though.
My son was under 18 and his Pedi Oncologist placed him on homebound school during treatment. That said his High School has around 2,000 students and it was January-March with Mono, Flu, Gastro bug, Hand Foot Mouth, more stuff floating aorund the county schools (they even closed school for a few days due to all the illness).

[Mike]

Hi Crystal,

I am not sure where your husband is being treated and the AFP numbers next lab draw may shed some light on the situation. If however, the AFP is still in the 11 range then I would ask my oncologist if it is possible that despite the levels being higher than the laboratory normal range if the number isn't indeed still normal. I may even present the oncologist with this commentary from Dr. Einhorn at Indiana University which discusses this exact kind of situation with the AFP http://ascopubs.org/doi/pdf/10.1200/JCO.2014.56.0607

Unless, I had significant rises in the AFP or other evidence of spread, I would not be wanting to go through BEPx3 without having a testicular cancer expert weigh in on my case. There is a list of experts our friends at the TCRC keep at: http://tcrc.acor.org/experts.html

I understand the logic behind BEPx1 if indeed it is stage I and not stage Is but I also hope that the oncologist spoke to you about the option for surveillance as well if it is stage I as I would guess that most experts would say that without LVI he would be considered lower risk for relapse.

Keep us posted.

Mike

[Davepet]

Here is part of what the Testicular Cancer Resource Center dictionary ( http://tcrc.acor.org/dictionary.html#GlossA )has to say about AFP:

The serum half life of AFP is 5 to 7 days, which implies that elevated levels of AFP should fall by one half of the initial level per week and should probably return to normal within 25 to 35 days after surgery if all of the tumor has been removed. The higher the level, though, the longer it will take to return to normal. Please note that AFP is normally less than about 5 ng/ml, but cancer cannot be assumed until it is over 25 ng/ml. Also note that a very small number of people have a naturally high level of this protein in their blood (though less than 25) even though they do not have cancer.

Bold text by me.

He is 31 days post I/O, assuming his AFP stayed at 4759 until the IO (it probably did not over those 4 days) than his AFP at 5-7 days post op should have been at 2380, 5 more days,1190, 5 more 595, 5 more 298, 5 more at 149, 5 more at 74. So at 30 days it *should* be at 74.His is at 11, 31 days post op, your doc should be pleased, not concerned. Under normal circumstances it would take almost 2 more weeks days to get from 74 to 11. ( 37,18,9). The half life of your husbands AFP has been about 3.5 days, so quite a bit faster than expected.His doc is wrong to be concerned.

He is likely cured already, I would not consider any additional active treatment unless those numbers start rising. If his doc insists on further treatment, have him contact Doc E...( or you contact him yourself)

Dave

[Addictedangel]

Update: afp down to 2.9!! Stage is 1a, we chose to do 1 round of chemo just in case, we start on Oct 2nd

[MamaAng]

My son had Neutropenia after his 1st BEP round and he ended up in the ER because of a bug bite! He was given a Neulasta auto-injector after the second round and it worked like a charm. Neulasta can have side effects and other chemo patients recommended taking Claritin for a few days. He had a few aches and pains but nothing serious.

[biwi]

Update: afp down to 2.9!! Stage is 1a, we chose to do 1 round of chemo just in case, we start on Oct 2nd

Great to hear. Going through 1xBEP will be annoying, but will give him extremely good chances of getting this all behind you two for good.

[Trekga]

Wishing your husband the best during chemo. Since it is one round, the concern about immunosuppression is not as intesnse as 3-2 rounds.