Reply With QuoteGood luck, were all thinking of you, God Bless & hope everything is alright.
Registered User
We are at the University of Colorado hospital now and have been waiting for 3 hours so far to get some word on how its going. Joey was in great spirits when we said goodbye. This is so difficult, we all love him so much. The doctor's said that it could be anywhere from 5 to 12 hours depending on what they find when they get in there. We will update everyone as soon as we know.
Stage IIB
12/29/11 - Diagnosed AFP-181,HCG-30,LDH - 181
12/30/11 - R I/O 40% EC,40% yolk sac, 10% chorio,immature teratoma with islands of immature & atypical cartilage
12/30/11 CT - 6 nodes largest is 2.8 x 2.2 cm
1/13/12 - AFP-24, HCG -7, LDH-389
1/24/12 - BEP x3 round 1 began
3/27/12 - BEPx 3 completed,6 nodes remain largest 2.9 x 2.2
4/26/12 - RPLND at University of Colorado,1dead, 5 teratomas
5/3/12 - All clear - surveillance
7/19/12, 10/1912 - all clear!
Registered User
Good luck, were all thinking of you, God Bless & hope everything is alright.
Jan 2012 - Pain and swelling
March 2012 - return to Doc
March 2012 - Ultra sound detects 4 cm mass
April 2012 - I/O
April 2012 - Mature (differentiated) teratoma
April 2012 - CT Scan no abnormalities found
Registered User
I hope everything is going well. I'm still trying to understand how the doctor determines how many nodes to remove. If I recall correctly, SP had quite a few removed. Can you tell me if you don't mind how many nodes they remove from Joey. I don't mean to be insensitive. The nurse who checked my son 4 weeks after his RPLND told me they only removed 4 from him. She made the comment they were suspicious looking. Did they give Joey an epidural (SP)?
Son Diagnosed 6/24/10
Right I/O 6/28/10
(65% Teratoma, 10% EC, 10% Yolk Sac, 10% Seminoma, 5% Choriocarcinoma)
3XBEP 8/10-10/10
RPLND 11/2/11 (cyst in right pelvic area was mature teratoma and lymph nodes were clear)
Moderator
Good luck to Joey! Let us know how it goes.
For # of nodes - Steve had 51 removed, I think (don't know why I remember that). Kel had giant tumor mass removed, then 6 nodes from one side and 10 from the other. I think it depends on the surgeon.
T
Tracy
Cancer pharmacologist, caregiver blog here
Wife to Kel, dx 12/30/11 Stage IIIc (poor) embyronal, AFP 13700, 10x11 cm retroperitoneal mass, 1 cm^2 lung met
Left I/O 12/31/10.
4xBEP 1-4/11, AFP=22, 5*7 RP mass, tx failed
1.5 x VeIP 5-6/11; tx failed, AFP/b-hCG rising
Salvage RPLND @Indy 6/29/11, metastatic mixed germ cell tumor with yolk sac, seminoma and teratoma
Remission! AFP steady since 9/2011; 1.5 years ALL CLEAR
Registered User
Tracy - You are just plain intelligent. I wish I had half your brain.Originally Posted by CancerSux
Son Diagnosed 6/24/10
Right I/O 6/28/10
(65% Teratoma, 10% EC, 10% Yolk Sac, 10% Seminoma, 5% Choriocarcinoma)
3XBEP 8/10-10/10
RPLND 11/2/11 (cyst in right pelvic area was mature teratoma and lymph nodes were clear)
Registered User
Hi JoeysMom!
I'm Joey too.
And your Joey's pathology was very similar to mine.
I had 53 nodes removed on RPLND- and came out of it just fine.
I'm wishing all the best for your son, and for you too.
(I can tell you, only my sisters now call me Joey- and I wouldn't have it any other way).
Take care,
Joey
Stage III. Embryonal Carcinoma, Mature Teratoma, Choriocarcinoma.
Diagnosed 4/19/06, Right I/O 4/21/06, RPLND 6/21/06, 4xEP, All Clear 1/29/07, RPLND Incisional Hernia Surgery 11/24/08, Hydrocelectomy and Vasectomy 11/23/09.
Please see a physician for medical advice!
My 2013 LiveSTRONG Site
The 2013 Already Balders
Moderator
Hahaha, Karen - I just fake it well! Now, where is Steve to tell me I was wrong?Tracy - You are just plain intelligent. I wish I had half your brain.
Does this mean we can't call you Joey? Awww, man!
Joey'smom - thinking of you and hoping his first night isn't too bad!
T
Tracy
Cancer pharmacologist, caregiver blog here
Wife to Kel, dx 12/30/11 Stage IIIc (poor) embyronal, AFP 13700, 10x11 cm retroperitoneal mass, 1 cm^2 lung met
Left I/O 12/31/10.
4xBEP 1-4/11, AFP=22, 5*7 RP mass, tx failed
1.5 x VeIP 5-6/11; tx failed, AFP/b-hCG rising
Salvage RPLND @Indy 6/29/11, metastatic mixed germ cell tumor with yolk sac, seminoma and teratoma
Remission! AFP steady since 9/2011; 1.5 years ALL CLEAR
Registered User
Hi JoeysMom,
You have been such a great asset to Joey in planning his attack on TC and I'm sure he appreciates how lucky he is to have you. No matter what age, it's always scary to have a child, or any loved one, go through surgery, especially when it's a little tricky. However, It sounds like he's in great hands. He's young, healthy and will come through and be just fine.
I'll be thinking of you and wish you all the best!! Keep us posted!
Diane
Cook/Maid/Chauffeur/ATM Machine/Personal Asst. to Austin
12/07/11 I/O AFP: 291 hCG: 151
12/08/11 CT Scan, Xrays - clear
12/15/11 Non Seminoma Stage1-B
EC, Teratoma, Yolk Sac, Intratubular
Surveillance
4/21/12 Relapse- Start 3XBEP
6/25/12 Finished BEP
7/02/12 Markers and CT Scan normal
7/11/12 Port Removed- back on Surveillance
10/3/12 3 month post-chemo check-up - All Clear!
2/28/13 8 month post-chemo check-up - All Clear!
Registered User
Joey is recovering now after a horrible night. He is having a reaction to something and he is itching uncontrollably. The stopped giving him meds thru his epidural thinking it might be that but the pain was excruciating, all they gave him was percoset and finally gave him the epidural meds again. He was in a shared room and his roommate was screaming all night, poor guy, but Joey didnt sleep. We finally got him in a private room but he is having a tough time. The itching is so bad! Does anyone know what could cause this, the docs keep giving him benadryl. We just asked for ativan to help him sleep but even that isnt working. I don't know how many nodes they removed, that is our next question, but they did remove 3 tumors with all surrounding lymph nodes. The surgeon also said that Joey's appendix looked strange so they removed that too. Everything is sent off to pathology. Over all they believe it went well, unforunately they could not spare any nerves on his right side, but they did salvage 2 big nerves on his left side. Any advice for helping him get through this pain and itching.
Stage IIB
12/29/11 - Diagnosed AFP-181,HCG-30,LDH - 181
12/30/11 - R I/O 40% EC,40% yolk sac, 10% chorio,immature teratoma with islands of immature & atypical cartilage
12/30/11 CT - 6 nodes largest is 2.8 x 2.2 cm
1/13/12 - AFP-24, HCG -7, LDH-389
1/24/12 - BEP x3 round 1 began
3/27/12 - BEPx 3 completed,6 nodes remain largest 2.9 x 2.2
4/26/12 - RPLND at University of Colorado,1dead, 5 teratomas
5/3/12 - All clear - surveillance
7/19/12, 10/1912 - all clear!
Registered User
Sounds like a nightmare. I'll be praying for your son.
Registered User
You and Joey are in our thoughts, I don't think we can give you any advice yet, but god bless both of you.
Jan 2012 - Pain and swelling
March 2012 - return to Doc
March 2012 - Ultra sound detects 4 cm mass
April 2012 - I/O
April 2012 - Mature (differentiated) teratoma
April 2012 - CT Scan no abnormalities found
Registered User
Sorry to hear about kosher discomfort. My daughter had a similar reaction to morphine in the hospital years ago. Hope that helps. Prayers for joey and your family.
Doug
"There's no dollar sign, on a piece of mind, this I've come to know" Zac Brown Band
Registered User
I hope they are able to do something about the itching soon. I'm glad you were able to get Joey a private room. He's got enough to deal with right now. Keep us posted on his recovery. Take care.
Son Diagnosed 6/24/10
Right I/O 6/28/10
(65% Teratoma, 10% EC, 10% Yolk Sac, 10% Seminoma, 5% Choriocarcinoma)
3XBEP 8/10-10/10
RPLND 11/2/11 (cyst in right pelvic area was mature teratoma and lymph nodes were clear)
Registered User
Wishing Joey a quick recovery.
A Mom
a mom
Son, age 25
2/28/12 Right I/O
Stage 1 nonseminoma
Embryonal carcinoma - 60%
yolk sac tumor - 30%
focal seminoma - 10%
LVI
CT scan clear
AFP - 22
4/9/12 BEP x 3
Registered User
Oh my gosh....what an ordeal. I hope Joey has been made more comfortable. He's lucky to have you. I'll be thinking of you all. Please let us know the latest.
Wishing you the best,
Diane
Cook/Maid/Chauffeur/ATM Machine/Personal Asst. to Austin
12/07/11 I/O AFP: 291 hCG: 151
12/08/11 CT Scan, Xrays - clear
12/15/11 Non Seminoma Stage1-B
EC, Teratoma, Yolk Sac, Intratubular
Surveillance
4/21/12 Relapse- Start 3XBEP
6/25/12 Finished BEP
7/02/12 Markers and CT Scan normal
7/11/12 Port Removed- back on Surveillance
10/3/12 3 month post-chemo check-up - All Clear!
2/28/13 8 month post-chemo check-up - All Clear!
Registered User
Hi I read your thread from the beginning.....those post op events are hard moments, but he ll do it. I ve read many bad things after RPLND and all the patients went through this no matter what. Now I hope the best for the results and the future. I wait for reading you.
All the best
Registered User
Sorry its been a bit since my last post. The internet here is sketchy to say the least. Joey is doing better but had another bad day yesterday, his epidural is out, they prescribed a different drug for the itching and are now giving him oxycodone, dilaudid, toradol and valium for the pain, not all at once thank goodness. He finally slept last night. His sister (my daughter) is a nurse and she is here with us reassuring us that everything is okay. His heart rate has not gone below 122 since his surgery but the surgeons do not seem concerned about that, his pulse ox is also going up and down, but all in all, he is 1000 times better than Friday. I cannot wait to get the pathology report back and see if he has cancer in his appendix and what the lymph nodes show. Just more waiting and waiting but at least my boy feels some relief this morning. Thanks everyone.
Stage IIB
12/29/11 - Diagnosed AFP-181,HCG-30,LDH - 181
12/30/11 - R I/O 40% EC,40% yolk sac, 10% chorio,immature teratoma with islands of immature & atypical cartilage
12/30/11 CT - 6 nodes largest is 2.8 x 2.2 cm
1/13/12 - AFP-24, HCG -7, LDH-389
1/24/12 - BEP x3 round 1 began
3/27/12 - BEPx 3 completed,6 nodes remain largest 2.9 x 2.2
4/26/12 - RPLND at University of Colorado,1dead, 5 teratomas
5/3/12 - All clear - surveillance
7/19/12, 10/1912 - all clear!
Registered User
Glad to see things are getting better for Joey. Sending positive thoughts your way for each day to be better than the last. I feel like this surgery is in my husbands future, and reading about your experience is so very helpful. Thank you for sharing. Keep us posted once you get the results. Should be soon right?
_____________________
Debrah,
Husband (Cory) age 31..
2/22/12-Consultation for a vasectomy. Turned away and told to get blood work and ultrasound. Cancer suspected.
2/24/12- Dx, B-hcg=9670, LDH=250
2/28/12- L I/O Embryonal, Chorio, teratoma-8.5cm retroperitoneal mass-2.5cm mass in neck lymph node
3/12/12- 4XBEP-Start of Round 1( HCG-8100)
4/2/12 Start of Round 2 (HCG down to 176)
4/23/12 Start of Round 3 (HCG down to 13)
5/14/12 Start of Round 4 (HCG down to 6)
Administrator
With caregivers like you and your daughter there for him, he surely will be back to himself in no time. Let joey know he has an army of tc warriors behind him rooting him on.
John
Diagnosed 4/17/08
Right orchiectomy 4/18/08
Pure choriocarcinoma; HCG 715,000; lungs, lymphnodes, liver, and random other places
4X VIP chemo at IU with Dr. Einhorn 4/25/08-7/4/08
HCG down to 7.2 10/28/08
HCG back up to 198 12/29/08
1 X PVB 1/2/09-1/6/09
2 X HDC w/ stem cell rescue 2/4/09-3/14/09
Follow-up with Dr. Einhorn 4/22/09
HCG 1.2
3 rounds, 21 days, twice daily, VP-16 50mg 4/24/09-7/10/09
http://www.caringbridge.org/visit/johncovell
Registered User
I wouldnt' worry about the heart rate, mine was in the 115->130 range for several days post surgery. The nurses told me its normal with this surgery especially post chemo. As long as they are watching him its all good.
11/21 Diagnosis
- EC 45%, Yolk Sac 40%, Teratoma 14%, Sematoma 1% w/ LVI
- CT no remote mets, RPLNs largest 4.2cm, few <1cm, Liver/Kidneys/Lungs/Brain CLEAR!
11/25 - Left I/O AFP:2715,HCG:503,LDH:289
12/8 - Post I/O AFP:855,HCG:304,LDH:NORMAL!
2/20 - 3xBEP DONE! AFP:5.8 HCG:<1
4/15 - RPLND Residual Necrosis/Teratoma removed
http://takingcancerdownoneballatatime.blogspot.com/
Registered User
Not much to add on the diagnostic front, but sendind thoughts and prayers to Joey (and you). Wishing you the best.
Son (18) diagnosed, left I/o 6/22/11
Stage 1b, 100% embryonal
RPLND 7/7/11, nodes were completely clear, surveillance
10/22/11 scan showed spots in chest and lungs, brought him home from school for treatment
3x BEP 11/15/11 - 1/10/12
CT scan immediately following treatment showed small something on lung; referred to Dr. Einhorn
Lung/wedge ressection 1/20/12 - pathology: scar tissue!
Back to school 1/23/12
5/10/12, 8/2/12, 5/13/13 (and a few in between) - All clear!
Registered User
Joey is home! His heart rate is still high (thanks Mike for providing that info about your rate) and he is on oxygen, he cannot seem to maintain a healthy pulse ox - his was at 66 while sleeping! If he takes deep breaths then it comes back up to 98 but when sleeping or resting he is low. We live at 9000 ft. elevation so the doctors were concerned (actually,my awesome daughter would not let it go either) so they ordered an evaluation and sure enough Joey needs to be on it 24/7 for the time being. Has anyone else dealt with this for post chemo RPLND?
But the good news is that his pain is under control and he is home, in his own bed, his hair is growing back, his beard is starting to get full again and he ate chicken soup! His appetite has been terrible, so this Mom was doing an Irish jig when he ate!
The pathology report was not back yet, but the doctor will call us as soon as it comes back this week. I can't wait to finally breathe again and am hoping that we finally get some good news with this pathology report. I will let you all know and thanks, thanks, thanks so much for your support!
Stage IIB
12/29/11 - Diagnosed AFP-181,HCG-30,LDH - 181
12/30/11 - R I/O 40% EC,40% yolk sac, 10% chorio,immature teratoma with islands of immature & atypical cartilage
12/30/11 CT - 6 nodes largest is 2.8 x 2.2 cm
1/13/12 - AFP-24, HCG -7, LDH-389
1/24/12 - BEP x3 round 1 began
3/27/12 - BEPx 3 completed,6 nodes remain largest 2.9 x 2.2
4/26/12 - RPLND at University of Colorado,1dead, 5 teratomas
5/3/12 - All clear - surveillance
7/19/12, 10/1912 - all clear!
Registered User
Wow, you Joey and your family have been on quite the roller coaster ride for the past four months. Glad to hear Joey's back home.....with less pain....and eating Mom's soup. Sound's like he has a wonderful support group. Before you know it, he'll be doing the Irish jig right along with you!
Keep feeding him well!
Diane
Cook/Maid/Chauffeur/ATM Machine/Personal Asst. to Austin
12/07/11 I/O AFP: 291 hCG: 151
12/08/11 CT Scan, Xrays - clear
12/15/11 Non Seminoma Stage1-B
EC, Teratoma, Yolk Sac, Intratubular
Surveillance
4/21/12 Relapse- Start 3XBEP
6/25/12 Finished BEP
7/02/12 Markers and CT Scan normal
7/11/12 Port Removed- back on Surveillance
10/3/12 3 month post-chemo check-up - All Clear!
2/28/13 8 month post-chemo check-up - All Clear!
Registered User
Your son and your family are in my prayers. It's bad enough going through it myself, watching one of my boys go through it would tear me up!
Cory
Cory
Diagnosed with pure seminoma - 4/10/2012
Right Orchiectomy - 4/13/2012
Stage IIb -- 8-10 lymph nodes involved
4EP chemo start 4/30/2012
Initial Tumor Markers
- Alpha Feta Protein (AFP) 3.3
- Beta HCG – 100
- LDH – 343
Registered User
Thanks for all of the very nice messages. What a difference a day makes! Joey ate more tonight and he feels "good"! He is taking oxycodone every 4 hours, night time seems worse. He is on oxygen at a level 2 and his fire department friends came by today with a pulse ox monitor and he is maintaining his oxygen level at 96 at 2 right now. Much improved over earlier in the week. We are still waiting on the pathology report, and hopefully we will be able to breathe again, after 5 months of this journey.
Does anyone have any helpful sights on bleomycin toxicity and oxygen? We are worried that his lungs might have taken a hit more than we knew. I was also wondering why he can't have high amounts of oxygen and what will happen if he does. We are a little concerned about this and I cannot find any good websites on lung toxicity.
Stage IIB
12/29/11 - Diagnosed AFP-181,HCG-30,LDH - 181
12/30/11 - R I/O 40% EC,40% yolk sac, 10% chorio,immature teratoma with islands of immature & atypical cartilage
12/30/11 CT - 6 nodes largest is 2.8 x 2.2 cm
1/13/12 - AFP-24, HCG -7, LDH-389
1/24/12 - BEP x3 round 1 began
3/27/12 - BEPx 3 completed,6 nodes remain largest 2.9 x 2.2
4/26/12 - RPLND at University of Colorado,1dead, 5 teratomas
5/3/12 - All clear - surveillance
7/19/12, 10/1912 - all clear!
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