HELP please read and give me feedback

katietigue
katietigue Member Posts: 2
edited March 2014 in Testicular Cancer #1
My name is Katie Tigue. My boyfriend Chris and I have a daughter who is 9 months today. Im looking for a little advice. Chris was diagnosed last August. Had a backpain, then everything went downhill form there., He had surgery to remove his testical. which came back- seminoma and nonseminoma. Stage 3. He did 3 cycles of chemo and 2 mondays ago had Retroperitoneal Lymph Node Dissection. Tues found out that they removed 46 nodes and 2 came back malignant. Theyre saying more chemo. Im sorry Im rushing but I never have a minute around here. my spelling is aweful. Just wondering if you have any advice. We both feel like from the beginning no one told us how serious his diagnoses was. Also iM worried about him having more bleo bc it wiped out his lung capacity and now his oxygen level is still low from surgery.

Comments

  • HeartofSoul
    HeartofSoul Member Posts: 729 Member
    #2
    survivor testicular cancer stage 3 non-seminoma, i can help
    Katie, i had Testicular Cancer non seminoma stage 3 in 2008. Im now in remission. My name is steve and i live in LA/Orange County Calif. my surgery was radical inguinal orchiectomy only, then i had 3 rds of BEP. mine in remission now for 14 months

    I have some qustions and points to add that may help

    1. After Chris had completed his 3 rds of chemo (BEP), what did cat/pet scan show?
    2. I suspect scan showed suspicious growth/mass in nodes, was there a biopsy done afterwards?
    3 what did pathology report say if biopsy was done (removal of 46 nodes seems like a lot.)
    4 Was his initial dx of TC include spread to lungs or elsewhere?
    4 Bleomycine is NOT required for treatment but EP (Etoposide and cisplatin) is 4 cycles
    5 2nd line chemo treatment is often a modified chemo protocol and may be more toxic
    6 What med center is Chris going to/location?
    7 Get additional opinons & ask for tumor board to review treatmetns, diagnoses, and strategy

    My recommendation is follow scenario 1 below:

    after Chris had 46 nodes removed 2 of them malignant, what are chances that there all the tumors have been removed? I can see 2 scenarios;

    Scenario 1: Chris waits and foregoes chemo treatment at this time and instead does close surveillance by doing blood work for tumor markers (LDH, HCG, FTP) monthly and cat scans every 3 months. If there is no evidence of identifiable cancer, then continue monitoring. The advantage is no chemo which has its own set of harmful risks especially another set of rds/coarse with all he has been thru. If cancer is located in future catscans for example, in lymph nodes, treatment can commence and due to the highly effective chemo meds used in TC, even more advanced stages of this type of cancer is highly treatable

    Scenario 2: Pursue chemo treatment (2nd line)with risk it may not be necessary at this time

    Im in CSN chat often and my chat name is HeartofSoul, great support option. you may email me at shzabel@hotmail.com for any support i can offer or questions i can answer?

    please see link below for important info on TC from a leading expert in field

    http://tcrc.acor.org/iu.html
  • Davepet
    Davepet Member Posts: 92
    #3
    I know time is tight
    But Heartofsoul is right, you need to fill in some more details, because it seems like some info is missing.

    It's surprising to me that he still had malignant nodes after chemo, so I'm wondering what tests were run before they staged his cancer? It is, of curse, not always possible to tell how serious a cancer is until they go inside & see for sure, & even that method isn't perfect.

    Please get back to us with some more info so we can try to help you make sense of his Dx.In the meantime, probably best to follow the doc's advice, go ahead & ask about omitting the Bleo if lung damage is an issue. My doc offered me the option of 3 course with Bleo or 4 courses without. He actually said he'd would choose to go without it, but most folks prefer to get it over with faster.

    My doc also order a lung function test before my treatment started so we had a baseline to determine if any damage had occurred, hopefully your boyfriends doc did they same.

    Dave
  • katietigue
    katietigue Member Posts: 2
    #4
    HeartofSoul said:

    survivor testicular cancer stage 3 non-seminoma, i can help
    Katie, i had Testicular Cancer non seminoma stage 3 in 2008. Im now in remission. My name is steve and i live in LA/Orange County Calif. my surgery was radical inguinal orchiectomy only, then i had 3 rds of BEP. mine in remission now for 14 months

    I have some qustions and points to add that may help

    1. After Chris had completed his 3 rds of chemo (BEP), what did cat/pet scan show?
    2. I suspect scan showed suspicious growth/mass in nodes, was there a biopsy done afterwards?
    3 what did pathology report say if biopsy was done (removal of 46 nodes seems like a lot.)
    4 Was his initial dx of TC include spread to lungs or elsewhere?
    4 Bleomycine is NOT required for treatment but EP (Etoposide and cisplatin) is 4 cycles
    5 2nd line chemo treatment is often a modified chemo protocol and may be more toxic
    6 What med center is Chris going to/location?
    7 Get additional opinons & ask for tumor board to review treatmetns, diagnoses, and strategy

    My recommendation is follow scenario 1 below:

    after Chris had 46 nodes removed 2 of them malignant, what are chances that there all the tumors have been removed? I can see 2 scenarios;

    Scenario 1: Chris waits and foregoes chemo treatment at this time and instead does close surveillance by doing blood work for tumor markers (LDH, HCG, FTP) monthly and cat scans every 3 months. If there is no evidence of identifiable cancer, then continue monitoring. The advantage is no chemo which has its own set of harmful risks especially another set of rds/coarse with all he has been thru. If cancer is located in future catscans for example, in lymph nodes, treatment can commence and due to the highly effective chemo meds used in TC, even more advanced stages of this type of cancer is highly treatable

    Scenario 2: Pursue chemo treatment (2nd line)with risk it may not be necessary at this time

    Im in CSN chat often and my chat name is HeartofSoul, great support option. you may email me at shzabel@hotmail.com for any support i can offer or questions i can answer?

    please see link below for important info on TC from a leading expert in field

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

    hi
    Im new to this website and everything I just wrote is gone??? Is it suppossed to show up on this thread. Ughhhh?
  • Davepet
    Davepet Member Posts: 92
    #5
    katietigue said:

    hi
    Im new to this website and everything I just wrote is gone??? Is it suppossed to show up on this thread. Ughhhh?

    Not sure what happened
    To your post, Katie, if you hit the "reply" button & typed in the comment box that popped up, you only need to hit the "post comment" button & everything should show up. If you hit the "Preview Comment" button, you will see what your post will look like,but it will not show up on here until you click "post comment" under the preview pane.

    Dave
  • Bigmikedc
    Bigmikedc Member Posts: 15
    #6
    HeartofSoul said:

    survivor testicular cancer stage 3 non-seminoma, i can help
    Katie, i had Testicular Cancer non seminoma stage 3 in 2008. Im now in remission. My name is steve and i live in LA/Orange County Calif. my surgery was radical inguinal orchiectomy only, then i had 3 rds of BEP. mine in remission now for 14 months

    I have some qustions and points to add that may help

    1. After Chris had completed his 3 rds of chemo (BEP), what did cat/pet scan show?
    2. I suspect scan showed suspicious growth/mass in nodes, was there a biopsy done afterwards?
    3 what did pathology report say if biopsy was done (removal of 46 nodes seems like a lot.)
    4 Was his initial dx of TC include spread to lungs or elsewhere?
    4 Bleomycine is NOT required for treatment but EP (Etoposide and cisplatin) is 4 cycles
    5 2nd line chemo treatment is often a modified chemo protocol and may be more toxic
    6 What med center is Chris going to/location?
    7 Get additional opinons & ask for tumor board to review treatmetns, diagnoses, and strategy

    My recommendation is follow scenario 1 below:

    after Chris had 46 nodes removed 2 of them malignant, what are chances that there all the tumors have been removed? I can see 2 scenarios;

    Scenario 1: Chris waits and foregoes chemo treatment at this time and instead does close surveillance by doing blood work for tumor markers (LDH, HCG, FTP) monthly and cat scans every 3 months. If there is no evidence of identifiable cancer, then continue monitoring. The advantage is no chemo which has its own set of harmful risks especially another set of rds/coarse with all he has been thru. If cancer is located in future catscans for example, in lymph nodes, treatment can commence and due to the highly effective chemo meds used in TC, even more advanced stages of this type of cancer is highly treatable

    Scenario 2: Pursue chemo treatment (2nd line)with risk it may not be necessary at this time

    Im in CSN chat often and my chat name is HeartofSoul, great support option. you may email me at shzabel@hotmail.com for any support i can offer or questions i can answer?

    please see link below for important info on TC from a leading expert in field

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

    hello Heartof soul
    I'm going in for BEPx3 (stage 2 Nonsem) (had the orchiectomy) and looking for advice on getting through it. Starts 4/19/10. Might email you as it might be easier than navigating this site.
    Mike
  • Mntlcase
    Mntlcase Member Posts: 5
    #7
    Bigmikedc said:

    hello Heartof soul
    I'm going in for BEPx3 (stage 2 Nonsem) (had the orchiectomy) and looking for advice on getting through it. Starts 4/19/10. Might email you as it might be easier than navigating this site.
    Mike

    Just finished EPx4 Stage 2b
    Hoping your 1 round went well. Takes alot out of you.
  • Bigmikedc
    Bigmikedc Member Posts: 15
    #8
    Mntlcase said:

    Just finished EPx4 Stage 2b
    Hoping your 1 round went well. Takes alot out of you.

    1st course BEP
    Just finished my first 5 days of BEP plus my first Bleomycin booster. Except for the sleeplessness from the steroids it wasn't too bad (if you can handle climbing the walls in bed) until the Neulasta shot on the 5th day. Went home feeling funky and laid down. Wasn't prepared for the headache I got (real sharp pain and the feeling that my hair roots were on fire). Wasn't feeling well enough to pump enough tylen/ ibupro to get a grip on it. Had a Vicodin and 1 did almost nothing. More of the same the next night. Finally better Sun. evening. Got a script for Tapranol which seems promising for dealing w/ that in the future. The Bleo booster really made me ill. Luckily the Zephron helped keep me from wanting to puke (tho I probly could have) and the Tapranol was relieving what was left of my headache as I was starting to get chills. But after 3 hrs I got home to bed and didn't move (except for chills) for 3 more hrs- thought I'd slept through the night. Never been so sick. But the next day i didn't take any meds and haven't today either. Appetite is still elusive but I had a beer last night w/ some friends and it wasn't bad. At least now I've experienced all the facets of the rest of my treatment and know more about what to expect. Just not sure if this all becomes cumulative after more time.

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