Yikes...25 year old man here with a tumor..

BrendanJohn

Hey everyone, God Bless...You guys are the toughest motherfuckers I have ever had the pleasure of sharing a discussion board with. If you told me 4 days ago that I would be on the "Cancer Survivors Network" looking for ideas and stories, I would have dropped dead. Well, here I am. Everyone has really encouraging and inspiring stories and I feel a lot better already.

Today is Saturday, as of Wednesday I was in my PCP`s office having a strange lump on my testicle investigated. The lump has been accompanied with light pain and sensitivity here and there. I get some pain when righty bangs around too much. I told him all this. So I got my Ultrasound done on Wednesday afternoon. The nurse was HOTT. Having her rub warm stuff / photograph my testicles for ten minutes was the highlight of my week.

I really thought it was nothing...But I was wrong. The doc called on Friday and says its a tumor in my right testicle, and they are most likely taking the testicle out whether its cancerous or not! He has me seeing a Urologist first thing on Monday..and thats all I know. What happens next?!? If anyone cares to share a story or response of any kind, it would be very cool.

-Brendan John
Boston MA

terato

I could go on about "hot" nurses, but let's get down to business
Brendan,

At the age of 28, I was diagnosed with "terato-carcinoma" aka embryonal testicular cancer of the left testicle in February of 1980, having the testicle removed in that month. The malignancy was detected in the lymph nodes on the inside of my spine in May of 1980, and I had ten of those removed. I underwent two years of combination chemotherapy (cisplatin, bleomycin, and vinblastin), and "knock-on-wood", have been clear ever since. My AFP tumor marker does test on the higher than normal side (7.0 - 13.0), but no further evidence of tumor has been detected in nearly 28 years. I still lose sleep anytime I test higher than the year before, but have learned to deal with the anxiety, even though I know that a few guys recur after 35 years.

I DID love those sponge baths, though!

Courage and Peace of Mind!

Rick

Davepet

Well, what happens next is
That you meet with the Urologist, & he'll most likely set up your surgery at that appt. Expect it to be rather soon, possibly by the end of the week.

The orchiectomy is a straightforward procedure, takes about an hour, post op discomfort isn't bad. Once they get the pathology reports from your tumor, they'll have a better idea of what you're up against, there are many different types of TC & treatment depends on which type(s) you have.

The best TC resource I've seen is the Testicular Cancer Resource Center:
http://tcrc.acor.org/index.html

You'll find the answer to all your questions there, but if not, just ask here.

Dave

BrendanJohn

Davepet said:

Well, what happens next is
That you meet with the Urologist, & he'll most likely set up your surgery at that appt. Expect it to be rather soon, possibly by the end of the week.

The orchiectomy is a straightforward procedure, takes about an hour, post op discomfort isn't bad. Once they get the pathology reports from your tumor, they'll have a better idea of what you're up against, there are many different types of TC & treatment depends on which type(s) you have.

The best TC resource I've seen is the Testicular Cancer Resource Center:
http://tcrc.acor.org/index.html

You'll find the answer to all your questions there, but if not, just ask here.

Dave

Out of surgery
Hey guys, thanks for the quick response and encouragement. I saw the Urologist on Monday, and was in a table having my nut removed on Tuesday afternoon. I actually didn`t respond well after the surgery. I thought I was ready to handle it...Boy was I wrong-when I woke up, I was in a bad place. I started to more or less freak out, and convinced myself I was in more pain than I really was. So they moved up my IV to a morphine equivalent, but after more complaining(by me).. I had too much of that and I wasn`t breathing well on my own because of over-sedation. Then they forced me to spend the night, and I continued to freak out. I am not proud of myself, and I am embarassed my family had to see me pull this ****.

I am still upset that this has happened, I was just having this thing initially looked at LAST WEDNESDAY!! And here I am, a week later with only one ball. How have you guys kept it together all these years? Are there any long term problems with only having one...i.e hair loss, or loss of big male muscles? I am worried I am losing my masculinity. Hope you guys can relate.

-Brendan

Davepet

BrendanJohn said:

Out of surgery
Hey guys, thanks for the quick response and encouragement. I saw the Urologist on Monday, and was in a table having my nut removed on Tuesday afternoon. I actually didn`t respond well after the surgery. I thought I was ready to handle it...Boy was I wrong-when I woke up, I was in a bad place. I started to more or less freak out, and convinced myself I was in more pain than I really was. So they moved up my IV to a morphine equivalent, but after more complaining(by me).. I had too much of that and I wasn`t breathing well on my own because of over-sedation. Then they forced me to spend the night, and I continued to freak out. I am not proud of myself, and I am embarassed my family had to see me pull this ****.

I am still upset that this has happened, I was just having this thing initially looked at LAST WEDNESDAY!! And here I am, a week later with only one ball. How have you guys kept it together all these years? Are there any long term problems with only having one...i.e hair loss, or loss of big male muscles? I am worried I am losing my masculinity. Hope you guys can relate.

-Brendan

Sorry you had problems
It was probably because you didn't have enough time to wrap your head around what was going to happen. Did you visit the Testicular Cancer Resource Center before you went in to surgery? The information there should help set your mind at ease.

In any event, one nut is all you need. I lost my first one 35 years ago at he age of 20 & I can still keep up with the young ones on the job site, & none of my sex partners through the years had any complaints, ( except my wife of 20+ years, she wishes I'd lose interest like she has) so no, there are no long term problems that I've encountered. You will be fine, once you come to terms with your fears.

You really need to concentrate now on what the pathology report shows. This will determine to a large extent the staging or your TC & what sort of further treatment you may need. You will probably also have a few more tests to go through. Again, go to the TCRC website where all the treatments, staging, testing, etc are explained in detail:

http://tcrc.acor.org/index.html

Keep us posted on your progress,
Dave

terato

BrendanJohn said:

Out of surgery
Hey guys, thanks for the quick response and encouragement. I saw the Urologist on Monday, and was in a table having my nut removed on Tuesday afternoon. I actually didn`t respond well after the surgery. I thought I was ready to handle it...Boy was I wrong-when I woke up, I was in a bad place. I started to more or less freak out, and convinced myself I was in more pain than I really was. So they moved up my IV to a morphine equivalent, but after more complaining(by me).. I had too much of that and I wasn`t breathing well on my own because of over-sedation. Then they forced me to spend the night, and I continued to freak out. I am not proud of myself, and I am embarassed my family had to see me pull this ****.

I am still upset that this has happened, I was just having this thing initially looked at LAST WEDNESDAY!! And here I am, a week later with only one ball. How have you guys kept it together all these years? Are there any long term problems with only having one...i.e hair loss, or loss of big male muscles? I am worried I am losing my masculinity. Hope you guys can relate.

-Brendan

Having one means the other just works twice as hard!
Brendan,

Removing the testicle wasn't as traumatic as I thought it would be. Removing the lymph nodes was something else I did not expect. I woke up from that surgery with a bunch of staples down my belly making me feel like a gutted perch. The combination chemo really made me nauseous and I puked like the possessed kid in the Exorcist. Anti-emetics were attempted, until it was discovered that I was allergic to the most effective medications, Compazine and Metaclopramide, which gave me dystonic reactions (loss of neuro-muscular control).

The hair will come back, along with your stamina. Just look at Lance Armstong, winning the Tour de France 7 times AND dating Sheryl Crow, among other gorgeous and talented celebrities.

I eventually had an implant to replace my missing testicle which actually felt better than the real one. One of my post-divorce girlfriends referred to it as "super ball"! Enough said?

Live Strong!

Rick

BrendanJohn

terato said:

Having one means the other just works twice as hard!
Brendan,

Removing the testicle wasn't as traumatic as I thought it would be. Removing the lymph nodes was something else I did not expect. I woke up from that surgery with a bunch of staples down my belly making me feel like a gutted perch. The combination chemo really made me nauseous and I puked like the possessed kid in the Exorcist. Anti-emetics were attempted, until it was discovered that I was allergic to the most effective medications, Compazine and Metaclopramide, which gave me dystonic reactions (loss of neuro-muscular control).

The hair will come back, along with your stamina. Just look at Lance Armstong, winning the Tour de France 7 times AND dating Sheryl Crow, among other gorgeous and talented celebrities.

I eventually had an implant to replace my missing testicle which actually felt better than the real one. One of my post-divorce girlfriends referred to it as "super ball"! Enough said?

Live Strong!

Rick

Thanks for the relplies
Thanks for the replies guys. Dave, you are dead-on about my reaction after surgery. It was too much to process at the time. Now that a few days have passed, I am comfortable with the idea that this portion of my body (my testicle) was sick, and had the potential to make the rest of my body sick. I am better off without it, and will certainly live longer having it removed. It had to be done. I like your sex drive Dave, you are a lot like me. I broke the world record... and masturbated a mere 36 hours after the surgery and ejaculated no problem (thank GOD). I had to know for my own peace of mind I guess.

Hey Rick, You had Chemo and Lymph Nodes removed? How big was your lump/tumor..And what stage was your cancer? I hope I caught mine early enough to avoid having these procedures done. I want to move on badly, However I will endure whatever I have to in order to prevent a return of this thing later in life. I lost my Dad to a brain tumor, don`t want that to happen to my kids. What is the likelihood of getting radiation for this?

-Brendan John

Davepet

BrendanJohn said:

Thanks for the relplies
Thanks for the replies guys. Dave, you are dead-on about my reaction after surgery. It was too much to process at the time. Now that a few days have passed, I am comfortable with the idea that this portion of my body (my testicle) was sick, and had the potential to make the rest of my body sick. I am better off without it, and will certainly live longer having it removed. It had to be done. I like your sex drive Dave, you are a lot like me. I broke the world record... and masturbated a mere 36 hours after the surgery and ejaculated no problem (thank GOD). I had to know for my own peace of mind I guess.

Hey Rick, You had Chemo and Lymph Nodes removed? How big was your lump/tumor..And what stage was your cancer? I hope I caught mine early enough to avoid having these procedures done. I want to move on badly, However I will endure whatever I have to in order to prevent a return of this thing later in life. I lost my Dad to a brain tumor, don`t want that to happen to my kids. What is the likelihood of getting radiation for this?

-Brendan John

Further treatment
Brendan, it's pretty rare for the orchiectomy to be the end of treatment, under the best of circumstances (stage 1 with non-aggressive cell type) the "treatment" could be " active surveillance" in which every month or two you get blood marker tests & a CT scan.

It all depends on what type of cells turn up in pathology and the results of some further testing you will likely have soon. I would expect you to be getting a test for tumor markers & probably a CT scan, based on my recent experience.

Radiation is useful if the cell type is a "seminoma" , if it is a "non seminoma" radiation is not effective. Go to that TCRC site I posted earlier, all this is spelled out in an easy to understand, but detailed way.

Dave

terato

BrendanJohn said:

Thanks for the relplies
Thanks for the replies guys. Dave, you are dead-on about my reaction after surgery. It was too much to process at the time. Now that a few days have passed, I am comfortable with the idea that this portion of my body (my testicle) was sick, and had the potential to make the rest of my body sick. I am better off without it, and will certainly live longer having it removed. It had to be done. I like your sex drive Dave, you are a lot like me. I broke the world record... and masturbated a mere 36 hours after the surgery and ejaculated no problem (thank GOD). I had to know for my own peace of mind I guess.

Hey Rick, You had Chemo and Lymph Nodes removed? How big was your lump/tumor..And what stage was your cancer? I hope I caught mine early enough to avoid having these procedures done. I want to move on badly, However I will endure whatever I have to in order to prevent a return of this thing later in life. I lost my Dad to a brain tumor, don`t want that to happen to my kids. What is the likelihood of getting radiation for this?

-Brendan John

Dave is correct.
Brendan,

Your specific diagnosis is the key to further treatment. Following the removal of my testicle and biopsy, my oncologist adopted a "wait and see" policy, until my tumor markers began to climb. I then had a liver scan, lung tomagram, and abdominal and pelvic CT scan, which indicated that two of my ten lymph nodes evidenced metastises. The chemotherapy served to destroy any remaining cancer cells.

Courage and Peace of Mind!

Rick

BrendanJohn

terato said:

Dave is correct.
Brendan,

Your specific diagnosis is the key to further treatment. Following the removal of my testicle and biopsy, my oncologist adopted a "wait and see" policy, until my tumor markers began to climb. I then had a liver scan, lung tomagram, and abdominal and pelvic CT scan, which indicated that two of my ten lymph nodes evidenced metastises. The chemotherapy served to destroy any remaining cancer cells.

Courage and Peace of Mind!

Rick

Thanks
Thanks again for the swift answers guys...Dave, I have been all over the TCRC website that you provided, thanks for the link to that. I am going to print out the pathology page, and bring it with me when I get my results on Thursday. This way, I can walk into the appointment with a strong idea of what the next step will be. Are you the author of that website? It is very helpful.

Rick, I have one blood test back that has been diagnosed as normal. Two more to go. I had a Cat scan or a CT scan...I am not sure what it was. Are those two the same thing? I had to lie down in a machine, and a circle apparatus whirled around me. I had to drink some stuff for two hours before-hand. What ever that was, the doctor came out and said I look fine. She said they were looking for tumors...Is this the same test that looks at my lymph nodes? Thanks again for all your help guys, I am going to refer back to the TCRC to figure out what test I have had so far. Also, the Lymph Node removal surgery looks BRUTAL. The big scar, possible damage to nerves...Anything (Including chemo) looks more pleasant than that.

-Brendan John

terato

BrendanJohn said:

Thanks
Thanks again for the swift answers guys...Dave, I have been all over the TCRC website that you provided, thanks for the link to that. I am going to print out the pathology page, and bring it with me when I get my results on Thursday. This way, I can walk into the appointment with a strong idea of what the next step will be. Are you the author of that website? It is very helpful.

Rick, I have one blood test back that has been diagnosed as normal. Two more to go. I had a Cat scan or a CT scan...I am not sure what it was. Are those two the same thing? I had to lie down in a machine, and a circle apparatus whirled around me. I had to drink some stuff for two hours before-hand. What ever that was, the doctor came out and said I look fine. She said they were looking for tumors...Is this the same test that looks at my lymph nodes? Thanks again for all your help guys, I am going to refer back to the TCRC to figure out what test I have had so far. Also, the Lymph Node removal surgery looks BRUTAL. The big scar, possible damage to nerves...Anything (Including chemo) looks more pleasant than that.

-Brendan John

Actually, I preferred the lymph node removal!
Brendan,

"CT" and "CAT" scans are the same thing, and, you are right in assuming that they were examining your body for further evidence of tumor development. As I'm sure you read on the TCRC website, the lymph nodes are the most likely places for initial metastesis. The lymphatic system is like a superhighway for cancer cells. By tearing out the "road", you greatly reduce, but not eliminate, the opportunity for further tumor growth. If, and I do say, "if", your oncologist deems it necessary to follow up with chemo, it is only because he believes this is the best course of action for lessening the likelihood of recurrence.

None of these things are pleasant, but they sure as hell beat the alternative!

Courage and Peace of Mind!

Rick

Davepet

BrendanJohn said:

Thanks
Thanks again for the swift answers guys...Dave, I have been all over the TCRC website that you provided, thanks for the link to that. I am going to print out the pathology page, and bring it with me when I get my results on Thursday. This way, I can walk into the appointment with a strong idea of what the next step will be. Are you the author of that website? It is very helpful.

Rick, I have one blood test back that has been diagnosed as normal. Two more to go. I had a Cat scan or a CT scan...I am not sure what it was. Are those two the same thing? I had to lie down in a machine, and a circle apparatus whirled around me. I had to drink some stuff for two hours before-hand. What ever that was, the doctor came out and said I look fine. She said they were looking for tumors...Is this the same test that looks at my lymph nodes? Thanks again for all your help guys, I am going to refer back to the TCRC to figure out what test I have had so far. Also, the Lymph Node removal surgery looks BRUTAL. The big scar, possible damage to nerves...Anything (Including chemo) looks more pleasant than that.

-Brendan John

I'm not the author
Of the TCRC website, just a big fan. It's so helpful to have all that info, explained so well. I can't think of a single question I had that wasn't answered there.

Did they inject a contrast dye when they did your CT? When they did mine they took one without & one with contrast.

Keep in mind that CT scans can really only confirm that you *do* have some cells that spread, they can't really give you a completely clean bill of health. They are not sensitive enough to see some things. In my case my CT scan didn't see "anything remarkable". A PET scan finally showed one lymph node that lit up.

The waiting can be the worst part of cancer. You may not know your difinitive diagnosis & treatment plan for a month or more. My surgery was on Dec 21 & I didn't start chemo until Feb 8.

Keep us posted on your progress.

Dave

BrendanJohn

Davepet said:

I'm not the author
Of the TCRC website, just a big fan. It's so helpful to have all that info, explained so well. I can't think of a single question I had that wasn't answered there.

Did they inject a contrast dye when they did your CT? When they did mine they took one without & one with contrast.

Keep in mind that CT scans can really only confirm that you *do* have some cells that spread, they can't really give you a completely clean bill of health. They are not sensitive enough to see some things. In my case my CT scan didn't see "anything remarkable". A PET scan finally showed one lymph node that lit up.

The waiting can be the worst part of cancer. You may not know your difinitive diagnosis & treatment plan for a month or more. My surgery was on Dec 21 & I didn't start chemo until Feb 8.

Keep us posted on your progress.

Dave

95 % Embryonal Carcinoma
Hey what`s up guys..?

Well I got the pathology today. Looks like the tumor is non-seminoma (95% Embryonal Carcinoma). Hmmm..This mean anything to you guys? My research tells me this is not the "better" tumor to get. The report says that it is unlikely to have spread to the lymphatic system, which is encouraging. Also my CT scans look good, blood tests look good minus a higher level for the one that looks at your protein levels. What would you guys say I am up against? The RPLND? Or the Chemo? I am heading to Dana Farber (Boston) next Thursday to meet with an Oncologist.

-Brendan John

Davepet

BrendanJohn said:

95 % Embryonal Carcinoma
Hey what`s up guys..?

Well I got the pathology today. Looks like the tumor is non-seminoma (95% Embryonal Carcinoma). Hmmm..This mean anything to you guys? My research tells me this is not the "better" tumor to get. The report says that it is unlikely to have spread to the lymphatic system, which is encouraging. Also my CT scans look good, blood tests look good minus a higher level for the one that looks at your protein levels. What would you guys say I am up against? The RPLND? Or the Chemo? I am heading to Dana Farber (Boston) next Thursday to meet with an Oncologist.

-Brendan John

Mine was 35% embryonal
And I was told that embryonal cells tend to be aggressive. They are also somewhat more likely to spread via blood stream than other types. My urologist was pretty sure I'd need chemo just based on they type of cells. No test can 100% rule out the possibility of some cells having spread before your surgery.

That said, there is evidence that active surveillance might be an option. The studies I looked at indicate that in stage 1 cancers (like your's appears to be, at the moment), 50% will eventually develop further cancer, however if caught early by the active surveillance, the cure rate it the same as if you went through the chemo now.

My guess is your oncologist may want further testing. My CT showed "nothing significant" but also wasn't quite normal, so my onc ordered a PET scan, which showed one Lymph node involved, so I'm currently in week 4 of a 9 week chemo treatment.

You are in the "waiting he!!" period of your cancer. You won't know anything for sure for a while yet. Your onc will fill in a lot of blanks, but I'll be surprised if he doesn't order further testing before finalizing you stage of cancer.

Keep us posted as you learn more,

Dave

Bigmikedc

Davepet said:

Mine was 35% embryonal
And I was told that embryonal cells tend to be aggressive. They are also somewhat more likely to spread via blood stream than other types. My urologist was pretty sure I'd need chemo just based on they type of cells. No test can 100% rule out the possibility of some cells having spread before your surgery.

That said, there is evidence that active surveillance might be an option. The studies I looked at indicate that in stage 1 cancers (like your's appears to be, at the moment), 50% will eventually develop further cancer, however if caught early by the active surveillance, the cure rate it the same as if you went through the chemo now.

My guess is your oncologist may want further testing. My CT showed "nothing significant" but also wasn't quite normal, so my onc ordered a PET scan, which showed one Lymph node involved, so I'm currently in week 4 of a 9 week chemo treatment.

You are in the "waiting he!!" period of your cancer. You won't know anything for sure for a while yet. Your onc will fill in a lot of blanks, but I'll be surprised if he doesn't order further testing before finalizing you stage of cancer.

Keep us posted as you learn more,

Dave

active?
looks like you guys are about at the end of what I'm starting-BEPx3. Hope you're available to walk me through this.

slapshot_81

Bigmikedc said:

active?
looks like you guys are about at the end of what I'm starting-BEPx3. Hope you're available to walk me through this.

helpful info
Brendan & Big Mike,

Guys, please read below, I hope this is helpful.

PLEASE e-mail me anytime b.pugliese@verizon.net. Brendan I am curious to know who your oncologist at DF is.

Brendan, your in Boston? Me too. I was also treated treated at Dana Farber and I volunteer in the "one on one" program. The nurses and doctors there are great!!! They kept telling me that if you going to get cancer, this is the type you want to get (not that anyone wants to be diagnosed with it) because of the cure/treatment rate. After my PET scan, my oncologist told me my chances of it returning within 5 years is 2%, not a bad statisic!!

I am 42 with 3 kids, . hopefully this will help you out. It's recap of my recent experience and treatment.

My wife is also an oncolgy nurse at a Boston hospital, so I had that on my side.

Back is October 2009 I was also diagnosed with germ cell cancer, mixed seminoma / nonseminoma. I went to get my hernia checked, my PCF ordered a CT Scan of my lower abdomen and saw lymph nodes behind my pelivc bone were enlarged. Had a needle biopsy done in late October.

On the plus side it's good they found it somewhat early. It did not start in the testicles, so nothing needs to be removed, it started in my lower abdomen and spread to the lymph nodes. The biopsy came back as embryonic, After almost 2 months of researching my medical records, it was found that at birth I had an undescended testicle which my oncologist said is a precursor for testicular or germ cell cancer.

In Novemeber, just before Thanksgiving I started chemo, the first of 3 rounds of BEP. The chemo wasn't as bad as I thought, except for the wait gain, the hyperness from the decadron and the amount of fluid I got during chemo that made me urinate about every hour around the clock. I found the bleomycin infusion on day 9 and day 15 to be the worst, the after effects gave me flu like symptoms and fever for about 8 hours after a 15 minute treatment. Tylenol worked the best. Being in shape and in good health definitly helped me plow through the chemo treatment. The last couple of days of my 3rd cycle, the nausea caught up with me bit, so I kept taking the prescribed meds, they do work.

I just finished my 3rd and hopefully final round on 1/15, had a CT scan on 1/21, I see the oncologist this week to hopefully get some good news. If not maybe 1 more round of chemo or surgury to remove any lymph nodes that are suspect.

One thing that really helped was keeping a daily journal. Write down how you feel, what you eat, bathroom habits, how you sleep etc, bring it to your dr. appt's it will definitly help.

Eat alot of strawberries, rasberries, blackberries and the like, it helps with energy levels and antioxidents are good for cleansing. I also found that green tea helped. Some days after a cycle you may not feel like eating anything, but try to to eat smaller meals during the day instead of breakfast, lunch and dinner. Even if you don't feel like eating, eat something, your body needs it.

You will get very tired, but the bright side of that is you can nap anytime you want or go to bed as early as you need to. Your body will tell how much rest you need, trust me, before chemo, I ran 30 miles a week and played hockey 3 nights a week (played in college many years ago), I could get by on 5-6 hours now I need 10-12 of sleep. Now in April, my phyiscal strength is about 95%, it takes time for your body to regroup. I still get tired in the late afternoon. Instead of running I started to walked every day for about 30 minutes.

I started chemo on 11/19/2009 and my hair started to fall out in mid December, so I just shaved it off. During the winter I used to wear a winter hat to bed....LOL. Now it is almost fully grown back.

Back in late February I had a PET Scan and all was clear!!!! And no surgery is needed. And I go to keep righty and lefty. I go back in June for my 3 month follow up CT SCAN.

Picture yourself as prize fighter...put the gloves on, step in the ring and don't stop throwing punches until and you land the knockout punch.

My thoughts and prayers are with you guys.

Please keep me posted!!!!!

Bigmikedc

slapshot_81 said:

helpful info
Brendan & Big Mike,

Guys, please read below, I hope this is helpful.

PLEASE e-mail me anytime b.pugliese@verizon.net. Brendan I am curious to know who your oncologist at DF is.

Brendan, your in Boston? Me too. I was also treated treated at Dana Farber and I volunteer in the "one on one" program. The nurses and doctors there are great!!! They kept telling me that if you going to get cancer, this is the type you want to get (not that anyone wants to be diagnosed with it) because of the cure/treatment rate. After my PET scan, my oncologist told me my chances of it returning within 5 years is 2%, not a bad statisic!!

I am 42 with 3 kids, . hopefully this will help you out. It's recap of my recent experience and treatment.

My wife is also an oncolgy nurse at a Boston hospital, so I had that on my side.

Back is October 2009 I was also diagnosed with germ cell cancer, mixed seminoma / nonseminoma. I went to get my hernia checked, my PCF ordered a CT Scan of my lower abdomen and saw lymph nodes behind my pelivc bone were enlarged. Had a needle biopsy done in late October.

On the plus side it's good they found it somewhat early. It did not start in the testicles, so nothing needs to be removed, it started in my lower abdomen and spread to the lymph nodes. The biopsy came back as embryonic, After almost 2 months of researching my medical records, it was found that at birth I had an undescended testicle which my oncologist said is a precursor for testicular or germ cell cancer.

In Novemeber, just before Thanksgiving I started chemo, the first of 3 rounds of BEP. The chemo wasn't as bad as I thought, except for the wait gain, the hyperness from the decadron and the amount of fluid I got during chemo that made me urinate about every hour around the clock. I found the bleomycin infusion on day 9 and day 15 to be the worst, the after effects gave me flu like symptoms and fever for about 8 hours after a 15 minute treatment. Tylenol worked the best. Being in shape and in good health definitly helped me plow through the chemo treatment. The last couple of days of my 3rd cycle, the nausea caught up with me bit, so I kept taking the prescribed meds, they do work.

I just finished my 3rd and hopefully final round on 1/15, had a CT scan on 1/21, I see the oncologist this week to hopefully get some good news. If not maybe 1 more round of chemo or surgury to remove any lymph nodes that are suspect.

One thing that really helped was keeping a daily journal. Write down how you feel, what you eat, bathroom habits, how you sleep etc, bring it to your dr. appt's it will definitly help.

Eat alot of strawberries, rasberries, blackberries and the like, it helps with energy levels and antioxidents are good for cleansing. I also found that green tea helped. Some days after a cycle you may not feel like eating anything, but try to to eat smaller meals during the day instead of breakfast, lunch and dinner. Even if you don't feel like eating, eat something, your body needs it.

You will get very tired, but the bright side of that is you can nap anytime you want or go to bed as early as you need to. Your body will tell how much rest you need, trust me, before chemo, I ran 30 miles a week and played hockey 3 nights a week (played in college many years ago), I could get by on 5-6 hours now I need 10-12 of sleep. Now in April, my phyiscal strength is about 95%, it takes time for your body to regroup. I still get tired in the late afternoon. Instead of running I started to walked every day for about 30 minutes.

I started chemo on 11/19/2009 and my hair started to fall out in mid December, so I just shaved it off. During the winter I used to wear a winter hat to bed....LOL. Now it is almost fully grown back.

Back in late February I had a PET Scan and all was clear!!!! And no surgery is needed. And I go to keep righty and lefty. I go back in June for my 3 month follow up CT SCAN.

Picture yourself as prize fighter...put the gloves on, step in the ring and don't stop throwing punches until and you land the knockout punch.

My thoughts and prayers are with you guys.

Please keep me posted!!!!!

1st course BEP
Sounds like we had similar experiences w/ the treatment. Sleeplessness was the worst part until the Neulasta shot day 5 which gave me a knife-like headache for the weekend. Then my 1st booster made me as sick (chills)as I've ever been tho the meds kept me from throwing up.

slapshot_81

Bigmikedc said:

1st course BEP
Sounds like we had similar experiences w/ the treatment. Sleeplessness was the worst part until the Neulasta shot day 5 which gave me a knife-like headache for the weekend. Then my 1st booster made me as sick (chills)as I've ever been tho the meds kept me from throwing up.

"Bleo flu"
That's what I called it, felt just like the flu for about 8 hours. On the 5 day cycle, I had bleo, cisplatin and etoposide on day one, day 2,3,4,5 had cisplatin and etopiside. Went back on day 9 and day 15 for bleo infusion. Day 21 would start the cycle all over again.

Neulasta to me seems like a "wonder drug", it kept the blood counts very high. It did work because my three kids are like walking petri dishes from the crap that catch at school.

Give the the strawberries, rasberries and blackberries and try. They do work, I am convinced that the fresh fruit and green tea helped me get through the chemo relativley well.

Did you have heartburn at all during chemo? I had it for the first 2 or 3 days of each cycle, but pepcid or prilosec did the trick. For the sleeplessness the ativan or a tylenol pm worked to knock me out for about 6 hours.

I actually played hockey on Tuesday night in a men's league and felt great. I have not played since early November '09 so my legs were like jello and I was in agony the next morning. I am running in a road race (3.2miles) on June 6th, I put a small team together to help raise money for cancer research.

Bigmikedc

slapshot_81 said:

"Bleo flu"
That's what I called it, felt just like the flu for about 8 hours. On the 5 day cycle, I had bleo, cisplatin and etoposide on day one, day 2,3,4,5 had cisplatin and etopiside. Went back on day 9 and day 15 for bleo infusion. Day 21 would start the cycle all over again.

Neulasta to me seems like a "wonder drug", it kept the blood counts very high. It did work because my three kids are like walking petri dishes from the crap that catch at school.

Give the the strawberries, rasberries and blackberries and try. They do work, I am convinced that the fresh fruit and green tea helped me get through the chemo relativley well.

Did you have heartburn at all during chemo? I had it for the first 2 or 3 days of each cycle, but pepcid or prilosec did the trick. For the sleeplessness the ativan or a tylenol pm worked to knock me out for about 6 hours.

I actually played hockey on Tuesday night in a men's league and felt great. I have not played since early November '09 so my legs were like jello and I was in agony the next morning. I am running in a road race (3.2miles) on June 6th, I put a small team together to help raise money for cancer research.

Sounds like I'm on the same
Sounds like I'm on the same regimen. I've had a history of heartburn so yes it's been a slight issue. Went on Prilosec and it seems to help. For some reason I keep trying to get away from the nausea meds (constipation?)- maybe since they work so well I don't feel as tho I need them but keep going back to the Odanestron (Zephon?)at least 1 more time. How did you deal w/ it? The Doc was really impressed by my white cell count- seems like he enjoys having a little good news to hand out occasionally poor guy. Nobody ever told me Atavan was an option- I know I don't get it in my drip and my guy is more of a Melatonin type guy. Won't prescribe Ambien.

slapshot_81

Bigmikedc said:

Sounds like I'm on the same
Sounds like I'm on the same regimen. I've had a history of heartburn so yes it's been a slight issue. Went on Prilosec and it seems to help. For some reason I keep trying to get away from the nausea meds (constipation?)- maybe since they work so well I don't feel as tho I need them but keep going back to the Odanestron (Zephon?)at least 1 more time. How did you deal w/ it? The Doc was really impressed by my white cell count- seems like he enjoys having a little good news to hand out occasionally poor guy. Nobody ever told me Atavan was an option- I know I don't get it in my drip and my guy is more of a Melatonin type guy. Won't prescribe Ambien.

nausea
I had the same problem with the Zophran and constipation, but the amount of fruit I ate sort of off set it. You may want to try taking a stool softener, I did during the 2nd and 3rd round.

Funny sorry, well now it is, at the time I thought was going to die!!! I had finished my 1st round of chemo and was feeling great, I was still taking the zophran a few days after the treatment, I didn't need it but took it anyway (wy wife is a cancer nurse and made me take it to stay ahead of the nausea), I had a craving for buffalo chicken pizza so I ordered one for dinner, man it tasted good going down. About 2am I woke and thought someone had stabbed me in the stomach, the pressure down below was unbearable!!!!!! The chesse from the pizza interacted with the zophran and bound me up something fierce. I called my onc nurse and she said to take a stool softener and drink a glass of Miralax, this was about 7:30am, so I did. About 2 o'clock that afternoon, I thought the world was coming to an end!!! I never thought having a BM could feel so good, I know it's gross, but sort of funny now.

I had melatonin as well. Ativan is precription, pill form, used as an anti-nausea med but does make you sleepy, I found it helpful at night when I couldn't sleep.

During cycles I felt great so if I didn't need the meds I didn't take them.

On my treatment days I would go in early, about 6:30am, I live about 15min. from Dana Farber, so I would be hooked up with the hydration fluid by 7:30, chemo infusions would start around 9:30, so I would be out by 1 or 2pm.

Bigmikedc

slapshot_81 said:

nausea
I had the same problem with the Zophran and constipation, but the amount of fruit I ate sort of off set it. You may want to try taking a stool softener, I did during the 2nd and 3rd round.

Funny sorry, well now it is, at the time I thought was going to die!!! I had finished my 1st round of chemo and was feeling great, I was still taking the zophran a few days after the treatment, I didn't need it but took it anyway (wy wife is a cancer nurse and made me take it to stay ahead of the nausea), I had a craving for buffalo chicken pizza so I ordered one for dinner, man it tasted good going down. About 2am I woke and thought someone had stabbed me in the stomach, the pressure down below was unbearable!!!!!! The chesse from the pizza interacted with the zophran and bound me up something fierce. I called my onc nurse and she said to take a stool softener and drink a glass of Miralax, this was about 7:30am, so I did. About 2 o'clock that afternoon, I thought the world was coming to an end!!! I never thought having a BM could feel so good, I know it's gross, but sort of funny now.

I had melatonin as well. Ativan is precription, pill form, used as an anti-nausea med but does make you sleepy, I found it helpful at night when I couldn't sleep.

During cycles I felt great so if I didn't need the meds I didn't take them.

On my treatment days I would go in early, about 6:30am, I live about 15min. from Dana Farber, so I would be hooked up with the hydration fluid by 7:30, chemo infusions would start around 9:30, so I would be out by 1 or 2pm.

I don't think I've ever been
I don't think I've ever been constipated in my life and it's amazing what a big role it seems to play in my life now. Not a favorite topic of discussion for others I'm sure. Been taking a stool softener but it seems like a fine line sometimes between the alternatives. Finally on day 10 I felt 'regular' again tho it was pretty much controlable the whole time once I got the hang of it.
My appetite is elusive. I eat opportunistically i.e. when I have an appetite. I'm sure I get enough calories but not on any schedule. When my wife asks me what I want for dinner I haven't got a clue.