I'm ready to go. Have done all of the worrying when you first find out, have done all of the fretting over treatment options, and have gotten a port put in.
Now, it's time to beat this.
Plus I know it's time to get going because I've had a persistent low-level pain/cramping on the right side of my abdomen for the past few days that's never really gone away, and I can only assume is another lymph node expanding from the cancer, thus causing the cramps. I'm going to let me oncologist know about this again on Monday and see if he thinks I should get another scan done. I told him about it this past Wednesday when I saw him. Chemo is starting 1 month to the day since I discovered something was wrong, so that's still within this 4-6 week window I've been hearing about, right?
Anyways, looking forward to getting started. Am raring to go. My wife and family are more nervous than I am I think. I just want to get my life back though. My wife and my family needs me, and victory is the only option. LET'S GO!![]()
Steve - http://www.caringbridge.org/visit/stevep
February 2011 - DX Stage IIB, 90% Embryonal Carcinoma, 10% Yolk Sac
Mar-May 2011 - EPx4 per Dr. Bosl at MSKCC, administered locally in DC
6-Jun 2011 - post chemo CT shows one lymph node at 1.4cm remaining
22-Jun 2011 - RPLND with Dr. Sheinfeld at MSKCC, all 51 nodes removed negative
Dec 2012 - 1.5 YEARS ALL CLEAR!
TC1: 1996, right orchiectomy, seminoma stage I 3.5 cm mass, radiation therapy (peri-aortic & pelvic 27.3 Gy)
TC2: 2008, left orchiectomy, seminoma stage IA 5 cm mass, left & right prostheses, AndroGel TRT, surveillance at MSKCC
I wouldn't assume your cramping etc is an "expanding" lymph node. It would have to be pretty large to be causing pain I think. And anyway, chemo should wipe it away.
Best of luck with the treatment and as you say you will be on the road to beating this disease. Glad your daughter used to your new hairstyle. You will get through this![]()
Val
Brother (23 when diagnosed) : Dianosed 14/09/2009, testicle removed, Non sem diagnosed. Tumour markers 36000 before op and dropped to 17000 after operation.. Chemo started end of september 4 x BEP. Tumour markers normal at end of chemo. RPLND 26 Feb 2010 No cancer found.
Latest Appointment May 2013- CT and markers normal
Hang in there SP, it's not gonna be fun, but you'll get through it just fine.
Dave
Jan, 1975: Right I/O, followed by RPLND
Dec, 2009: Left I/O, followed by 3xBEP
What a fantastic attitude you have. As Dave says, some days will be challenging but you will get through the 12 weeks and be done with treatment. I wish you the best tomorrow - I think the first day is a bit nerve-racking because you don't know what to expect. Your treatment is long and if the treatment center has rooms with beds see if you can get one of those (versus being in a chair for 6 hours).
Good luck, and kick the a$$ of this damn disease!
Heidi
Husband - age 51
10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; ß-HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
11/1/10 4X BEP
12/7/10 End Cycle 2 - ß-HCG = 2; AFP = 4.6; LDH = 139 ; 4XBEP changed to 3 as tumor now 2.1 x 3.7 cm
2/15/11 - Post-chemo PET ; residual 8 mm x 2 cm
6/29/11 - Lung nodules stable or smaller, chest mass continues to shrink & markers all normal
Surveillance since 6/11
Best of luck SP!! Loving the positive attitude.![]()
Son (James, age 17):
12/1/10 - TC confirmed
HCG 80, AFP 156
12/3/10 - Left I/O
70% Mature teratoma, 30% EC/yolk sac. 41 x 37mm. Multiple foci of vascular invasion, negative spermatic cord margins.
1/12/11 - HCG 7, AFP 4.6. Surveillance.
2/7/11 - Tumour markers elevated - HCG 18, AFP 14.5
2/15/11 - PET and CT scans show at least 4 lymph nodes affected (abdomen and base of neck).
3xBEP completed April.
Celebrated 18th birthday.
6/30/11 - All Clear!
Nick
Embryonal Carcinoma; Seminoma. Marker negative.
August 2001: Right I/O .
August - December 2001: Surveillance .
December 2001: Relapse - Stage III. Mets in lymph nodes and lung.
December 2001 - March 2002: 3xBEP .
Complications: Neutropaenic sepsis during cycles 1 & 3. I/V antibiotics and isolation.
March 2012 - Ten years since finishing chemo.
Survivorship Blog is here
Good luck, S.P.! With your attitude, the recovery will certainly be complete and quick! Keep all of us posted... early and often.
All the best,
MK
2/15/11 Changes noted
2/11 AFP=4.3, hCG=11
3/11 left I/O, X-ray, CT Scan Clear
3/11 Classic Seminoma, AFP=3.2, hCG<1
4/11 Second path: Seminoma
5/11 All clear (CT, X-ray, AFP=4.3, hCG<1)
8/11 All clear (CT, X-ray, AFP=4.4, hCG<2)
10/11 AFP=4.8, hCG<1
12/12 All clear (CT, X-ray, AFP=6.1, hCG<1)
3/12 AFP=3.2, hCG<1
4/12 All clear (CT, X-ray, AFP=4.7, hCG=1)
8/12 hCG<1, AFP=5.0
10/12 All clear (MRI)
4/13 hCG<1, AFP=3.6
5/13 All clear (MRI)
SP-
Good luck this week....
I am 7 days ahead of you on the same treatment and it was not that bad for me...
The cancer on the other hand has told me it is going to roll over and die.![]()
Good Luck SP....great attitude!! You can do it.....Derek starts his 2nd cycle tomorrow morning. Keep us updated as how it's going for you.
Thanks for the support everybody! This site is great. Yup, time to kick this cancer's butt. Life was good. Great wife, two wonderful young kids who drive me crazy but I love to death anyways, and a nice house, and now this stupid cancer is trying to ruin all of that for me. NO WAY.
My mom arrived yesterday to help for the next two weeks, so I took the wife out for a nice dinner last night before the battle begins. Got some cute pictures of us with my new haircut that I'll post somewhere later. Poor girl, her nerves are shot. She knows all the stats and numbers, but can't help but worry to death. She's a worry wart. The very best thing I could do for her near-term is to handle the treatment well, so hopefully I will.
Steve - http://www.caringbridge.org/visit/stevep
February 2011 - DX Stage IIB, 90% Embryonal Carcinoma, 10% Yolk Sac
Mar-May 2011 - EPx4 per Dr. Bosl at MSKCC, administered locally in DC
6-Jun 2011 - post chemo CT shows one lymph node at 1.4cm remaining
22-Jun 2011 - RPLND with Dr. Sheinfeld at MSKCC, all 51 nodes removed negative
Dec 2012 - 1.5 YEARS ALL CLEAR!
Indeed you will. Best of luck!
"Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
11.22.06 -Dx the day before Thanksgiving
12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! Final follow-up: 07/2014.
Please support my fundraising efforts for the 2013 Austin LIVESTRONG Half Marathon!
Kick ass S.P.!! You're going to do great!
Diagnosed 1/27/11 @ 3:30PM
Pre-I/O Markers AFP 24, HCG 1.4
Left I/O 1/31/11, 100% Classic Seminoma
Staged @ 1B
02/23/11 Put on surveillence, per Dr. Einhorn
Current Markers AFP 21, HCG <.6
2 lymph nodes 5.5 and 7.5 mm
3/5/13 2 Years ALL CLEAR!!!
DAY 1 IS DOWN!
The port works brilliantly. Didn't bother me at all either going in or going out. It was so painless that I told them to just take the needle out so that I don't have to mess with plastic bags when I want to wash, or worry about how I sleep.
Definitely feeling the fatigue already, but I think that's more our 2 yr old wearing everybody down than anything. He's not feverish anymore, but is still a bit congested and thus irritable. He was up fussing last night and I couldn't get any sleep from about 2-5am. My wife and I took turns trying to get him down again. By the time I finally did (magic touch), I was of course wide awake.
Ativan should help that I think. For me, not him. LOL![]()
Steve - http://www.caringbridge.org/visit/stevep
February 2011 - DX Stage IIB, 90% Embryonal Carcinoma, 10% Yolk Sac
Mar-May 2011 - EPx4 per Dr. Bosl at MSKCC, administered locally in DC
6-Jun 2011 - post chemo CT shows one lymph node at 1.4cm remaining
22-Jun 2011 - RPLND with Dr. Sheinfeld at MSKCC, all 51 nodes removed negative
Dec 2012 - 1.5 YEARS ALL CLEAR!
Wife was eating some nasty smelling garlic/shrimp chips. Normally it wouldn't bother me but I had to tell her to put them away. Yeah, got the nauseous feeling from a strong smell. eeewww![]()
Food odors were one of the biggest challenges during and immediately chemo. As is the change in how things taste. I cooked really bland stuff. And aired out the kitchen.
Heidi
Husband - age 51
10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; ß-HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
11/1/10 4X BEP
12/7/10 End Cycle 2 - ß-HCG = 2; AFP = 4.6; LDH = 139 ; 4XBEP changed to 3 as tumor now 2.1 x 3.7 cm
2/15/11 - Post-chemo PET ; residual 8 mm x 2 cm
6/29/11 - Lung nodules stable or smaller, chest mass continues to shrink & markers all normal
Surveillance since 6/11
I have too many friends and family and friends of the family that want to keep tabs on my situation, so I've put up one of those Caring Bridge websites, now linked in my sig.
http://www.caringbridge.org/visit/stevep
Since I know fatigue is going to set in harder, I'll put most of my detailed updates there, and just sort of do a weekly summary here. That way I'm not spending too much time trying to keep multiple things updated.![]()
Steve - http://www.caringbridge.org/visit/stevep
February 2011 - DX Stage IIB, 90% Embryonal Carcinoma, 10% Yolk Sac
Mar-May 2011 - EPx4 per Dr. Bosl at MSKCC, administered locally in DC
6-Jun 2011 - post chemo CT shows one lymph node at 1.4cm remaining
22-Jun 2011 - RPLND with Dr. Sheinfeld at MSKCC, all 51 nodes removed negative
Dec 2012 - 1.5 YEARS ALL CLEAR!
Glad things are going well so far and you have a great attitudeI think that really makes a difference!
Tina, wife to Gene
Right I/O 2/21/11
60% embryonal carcinoma- 40% seminoma with L/V invasion, Stage 1B, Cat Scan- clear
HCG- 1.2, AFP-1.5, LDH-normal
BEP X 2 started 3-7-11
Bleo canceled for 2nd round, lung issues
EP 3-28-11 X 5 days, finished chemo 4-1-11
F/U cat scan 4/14/11 - Stable
3rd round EP as precaution because Bleo was cancelled, start 4-25, finished chemo 4-29-11, pneumonia 5-6-11
6-1-11, 8-3-11, 9-7-11, 10-19-11, 11-16-11, 12-18-11, 1-18-12, 5-8-12 Clear
Thanks MrsB.
Managed to sleep OK last night. Went down at 9pm I think (8pm prior to the time change) which is definitely A LOT earlier than normal for me, and then woke up around 4pm. Still earlier than I'd like, but that's 7 hours of solid sleep and pretty good for me, so I got up.
Only needed the Kytril last night for anti-nausea as a preventative measure. After smelling my wife's nasty chinese grocery store chips I wasn't feeling too hot so I took some just in case. Got Decadron and Emend via IV yesterday, but the nurse said they'd be good for 5-7 days so I'm guessing they're designed to last for your chemo cycle and are slower acting. Piece of paper I have says to start the oral Decadron this morning so I'll take that shortly. Cycle 1 Round 2 begins at 11am.
Steve - http://www.caringbridge.org/visit/stevep
February 2011 - DX Stage IIB, 90% Embryonal Carcinoma, 10% Yolk Sac
Mar-May 2011 - EPx4 per Dr. Bosl at MSKCC, administered locally in DC
6-Jun 2011 - post chemo CT shows one lymph node at 1.4cm remaining
22-Jun 2011 - RPLND with Dr. Sheinfeld at MSKCC, all 51 nodes removed negative
Dec 2012 - 1.5 YEARS ALL CLEAR!
Good luck to you friend! time will go by quickly.
Jan 11/2011 - left orchiectomy
Biopsy 100% Embryonal Carcinoma
CT Shows spread to two lynph nodes largest 5.9cm
Jan 19/2011 Tumoral Markers lowered to almost normal levels but still high
Staring BEPx3 on FEB 21/2011
CT scan 5.9cm mass > 1.9cm Markers Normal
RPLND June 30/2011 Pathologhy reports: necrotic tissue
Good luck mate. Sending best wishes. I hope this is swift and not too unpleasant. You have an excellent attitude. Kepp us updated...
Adrian
July 2010 Stage one seminoma, 4.8cm. Rete testis invasion. HCG 28.
Sept 2010 Single dose carboplatin (AUC x 7)
Dec 2010 Tumour markers normal.
Mar 2011 Follow-up CT scan - clear.
Sept 2011 CT and CXR - clear.
Heidi
Husband - age 51
10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; ß-HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
11/1/10 4X BEP
12/7/10 End Cycle 2 - ß-HCG = 2; AFP = 4.6; LDH = 139 ; 4XBEP changed to 3 as tumor now 2.1 x 3.7 cm
2/15/11 - Post-chemo PET ; residual 8 mm x 2 cm
6/29/11 - Lung nodules stable or smaller, chest mass continues to shrink & markers all normal
Surveillance since 6/11
Or it might make you bounce off the walls as it did me. I got them to cut down from 20mg to 4mg. When I was on the high dose I literally couldn't sit still.
The biggest thing you should focus on is walking and staying hydrated. Sounds tough but chemo is no excuse for just laying around, it will only make things worse. Besides I know for a fact you will feel better after a nice walk around.
The more hydrated you are the faster the drugs can be cleaned out of your system and hopefully reduce side effects (tinitus, numbness, etc.)
I also recommend staying away from foods you would normaly eat. you don't want a nauseating pavlovian response in the future when biting into that juicey what ever..
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
Just got back from Cycle 1 Day 2 and actually feel better after leaving than when I walked in. I had a very low-level nauseous feeling, but the nurse guessed that it wasn't anything due to the chemo drugs per se but rather that stomach acid tends to get cranked up by about 50% and that it was stomach related. To test it out, she gave me an IV does of Pepcid AC through my port, and sure enough I felt better in about 15 minutes. She said to get some of that OTC and not bother with Tums since that's very temporary relief only (an hour). If the OTC stuff doesn't work she said she could get me some prescription strength that would work better.
TC Destroyer, yes good tip thanks! I am trying to stay active and walk around a bit. I used to work out regularly, 3-5 times per week for 30-45 minutes. I feel awful not having been able to work out much if at all due to the orchiectomy and then reagravating my back, and then getting the port put in. Makes me angry. Gonna be another battle after this to get my body back in shape, so whatever I can do during chemo will certainly help.
Gonna go out and run some errands with my mom and then will probably come back and take a nap for a bit. I'm feeling the fatigue a bit more today, but feel a little better after some lunch so maybe I'll have some extra energy.
Steve - http://www.caringbridge.org/visit/stevep
February 2011 - DX Stage IIB, 90% Embryonal Carcinoma, 10% Yolk Sac
Mar-May 2011 - EPx4 per Dr. Bosl at MSKCC, administered locally in DC
6-Jun 2011 - post chemo CT shows one lymph node at 1.4cm remaining
22-Jun 2011 - RPLND with Dr. Sheinfeld at MSKCC, all 51 nodes removed negative
Dec 2012 - 1.5 YEARS ALL CLEAR!
My husband just finished his first week of BEP and got his 2nd Bleo dose yest afternoon. His biggest complaint has been fatigure. He has had a bit of nausea now and then but for the most part is doing well and his ledgendary appetite doesn't seem to be affected one bit, to this point anyway. He did have trouble sleeping last night because of the steriods and got the Bleo "fever, chills" thing. He felt cold and clammy to the touch and he also complained that his bones "felt like they were on fire" not sure if that was the neulasta shot he got on Sat or the Bleo, either way, a bit of a miserable night but he was feeling better this morning and sleeping when I left for work. He was going to try and get out and do a few work related things if he felt up to it.
Glad to hear things are going well so far and hopefully you won't have too many side affects![]()
Tina, wife to Gene
Right I/O 2/21/11
60% embryonal carcinoma- 40% seminoma with L/V invasion, Stage 1B, Cat Scan- clear
HCG- 1.2, AFP-1.5, LDH-normal
BEP X 2 started 3-7-11
Bleo canceled for 2nd round, lung issues
EP 3-28-11 X 5 days, finished chemo 4-1-11
F/U cat scan 4/14/11 - Stable
3rd round EP as precaution because Bleo was cancelled, start 4-25, finished chemo 4-29-11, pneumonia 5-6-11
6-1-11, 8-3-11, 9-7-11, 10-19-11, 11-16-11, 12-18-11, 1-18-12, 5-8-12 Clear
Started to feel a little nauseous again this afternoon and was having some hiccups and burps which the nurse said I would if it was stomach acid related. So I popped an OTC Pepcid AC and then ate some crackers which the nurse said would help absorb the excess stomach acid. Sure enough she's right. I feel much better now! This woman is a pro. I'm gonna have to get her some flowers.
Fatigue. Since I've traveled quite extensively I can relate it to jet lag. Yesterday, it felt like flying from the east coast of the U.S. to maybe California. I couldn't quite make it to the normal bedtime and had to go to bed early. Today it feels like maybe Hawaii. I haven't been there, but extrapolating. Maybe Europe also. About to go down for a little nap at 4pm here. So closer to the end of the week I'll probably feel about like I've just gotten off of a long trans-Pacific flight from the east coast of the U.S. to the Pacific rim, which I've done 7 or 8 times. That's bad. You get on a Friday night flight and land in someplace like Singapore on Sunday morning. It's the morning and you've slept at least a little on the plane and you're in a cool new place so you want to go look around. Except 30 mins to an hour after you do you realize that you're about to crash hard and have to hobble back to your hotel to do so, and it's not even noon yet. Yes. Been there, done that.
So feeling good, just tired. Nappy time.![]()
Last edited by S P; 03-15-11 at 03:41 PM.
Steve - http://www.caringbridge.org/visit/stevep
February 2011 - DX Stage IIB, 90% Embryonal Carcinoma, 10% Yolk Sac
Mar-May 2011 - EPx4 per Dr. Bosl at MSKCC, administered locally in DC
6-Jun 2011 - post chemo CT shows one lymph node at 1.4cm remaining
22-Jun 2011 - RPLND with Dr. Sheinfeld at MSKCC, all 51 nodes removed negative
Dec 2012 - 1.5 YEARS ALL CLEAR!
Feeling OK this AM still. About to head off for Round 3 of Cycle 1 in about 45 minutes.
The OTC Pepcid AC wants to work but doesn't quite have the horsepower, so I'll definitely get the prescription stuff today. Had to supplement with Tums and tried some ginger ale last night which helped settle the stomach stuff, but then I got hiccups, probably from the ginger ale. Had to resort to my backup med which calmed it down and then I got a decent night of sleep. More fatigue this morning than last, but otherwise doing good, and spirits are high.![]()
Steve - http://www.caringbridge.org/visit/stevep
February 2011 - DX Stage IIB, 90% Embryonal Carcinoma, 10% Yolk Sac
Mar-May 2011 - EPx4 per Dr. Bosl at MSKCC, administered locally in DC
6-Jun 2011 - post chemo CT shows one lymph node at 1.4cm remaining
22-Jun 2011 - RPLND with Dr. Sheinfeld at MSKCC, all 51 nodes removed negative
Dec 2012 - 1.5 YEARS ALL CLEAR!
Cycle 1 Day 3 treatment is done. Still feeling good, but more fatigue. Slept through most of the infusion today. Stomach acid under control for now. Got something Rx strength to try out tonight. Going to try to stay ahead of the fatigue a little more by resting this afternoon, so that I can be up and around for the kids a little when they get home.
Steve - http://www.caringbridge.org/visit/stevep
February 2011 - DX Stage IIB, 90% Embryonal Carcinoma, 10% Yolk Sac
Mar-May 2011 - EPx4 per Dr. Bosl at MSKCC, administered locally in DC
6-Jun 2011 - post chemo CT shows one lymph node at 1.4cm remaining
22-Jun 2011 - RPLND with Dr. Sheinfeld at MSKCC, all 51 nodes removed negative
Dec 2012 - 1.5 YEARS ALL CLEAR!
I'm glad it's going OK, Steve. Enjoy the time with the kids.
Nick
Embryonal Carcinoma; Seminoma. Marker negative.
August 2001: Right I/O .
August - December 2001: Surveillance .
December 2001: Relapse - Stage III. Mets in lymph nodes and lung.
December 2001 - March 2002: 3xBEP .
Complications: Neutropaenic sepsis during cycles 1 & 3. I/V antibiotics and isolation.
March 2012 - Ten years since finishing chemo.
Survivorship Blog is here
4 down for this cycle, and 1 to go. Hanging in there!![]()
Glad things are going well. My hubby has had a bit of a rough week, digestive issues and fatigue, hopefully he feels better in a couple of days.
Tina, wife to Gene
Right I/O 2/21/11
60% embryonal carcinoma- 40% seminoma with L/V invasion, Stage 1B, Cat Scan- clear
HCG- 1.2, AFP-1.5, LDH-normal
BEP X 2 started 3-7-11
Bleo canceled for 2nd round, lung issues
EP 3-28-11 X 5 days, finished chemo 4-1-11
F/U cat scan 4/14/11 - Stable
3rd round EP as precaution because Bleo was cancelled, start 4-25, finished chemo 4-29-11, pneumonia 5-6-11
6-1-11, 8-3-11, 9-7-11, 10-19-11, 11-16-11, 12-18-11, 1-18-12, 5-8-12 Clear
Weather was great today, 60F and sunny, so I went out for an afternoon walk with my mom. Over and across the street 0.5 miles to pickup a car from the shop, drove it back to the house, and then about a 1 mile walk around the neighborhood and I was spent!This is the guy that used to go out for a 10 mile walk/run and complete in about an hour, and then do a 30-45 minute workout in my budget home gym when I got back. Man oh man, chemo really does knock the wind out of you, but it sure did feel nice. I feel better and like I have more energy now.
Sorry to hear about the rough couple of days for Gene, MrsB. Digestive issues and GI system discomfort is the biggest issue I've been having besides the fatigue as well. I actually went OFF of one of my anti-nausea meds per my awesome chemo nurse's suggestion and seem to feel better from that, and still haven't had any nausea. She said the IV anti-nausea stuff they give me during the week should be more than enough, and that too much stuff in your system might be causing other problems. I think they start you off over-medicated somewhat, so as long as he isn't having any nausea issues maybe try stripping off some of the meds?
Steve - http://www.caringbridge.org/visit/stevep
February 2011 - DX Stage IIB, 90% Embryonal Carcinoma, 10% Yolk Sac
Mar-May 2011 - EPx4 per Dr. Bosl at MSKCC, administered locally in DC
6-Jun 2011 - post chemo CT shows one lymph node at 1.4cm remaining
22-Jun 2011 - RPLND with Dr. Sheinfeld at MSKCC, all 51 nodes removed negative
Dec 2012 - 1.5 YEARS ALL CLEAR!
Keep it up man, good to hear it's going good!!!
Figured I'd check in. It's been a rough week.
Was just starting to get some pep back after the chemo on Monday/Tuesday when I got steamrollered by the worst head/sinus cold I've had. WBC on Monday was 3.8 (4.0-10.0 normal) so they gave me a neulesta shot and sent me on my way thinking that ought to be enough to handle anything. Nope. Not this.
On Tuesday when this thing hit, it just flattened me. Could barely get out of bed at all Wednesday and Thursday and am just now starting to feel better. Went in for check up today and they found my WBC to be 0.8. Doh. So getting neupogen, faster acting, today, and over the weekend on Saturday and Sunday too.
Hopefully I'll feel better and be rid of this soon. This has been worse than the chemo, to be honest.
Steve - http://www.caringbridge.org/visit/stevep
February 2011 - DX Stage IIB, 90% Embryonal Carcinoma, 10% Yolk Sac
Mar-May 2011 - EPx4 per Dr. Bosl at MSKCC, administered locally in DC
6-Jun 2011 - post chemo CT shows one lymph node at 1.4cm remaining
22-Jun 2011 - RPLND with Dr. Sheinfeld at MSKCC, all 51 nodes removed negative
Dec 2012 - 1.5 YEARS ALL CLEAR!
Hope you are feeling better. My hubby was felled by an illeus and back pain from the neulasta shot and spent 3.5 days in the hospitalHe is home and doing better but is on antibiotics for a cold/cough. We didn't want to take any chances with his 2nd round starting on Monday. This whole thing just sucks sometimes. Hang in there.
Tina, wife to Gene
Right I/O 2/21/11
60% embryonal carcinoma- 40% seminoma with L/V invasion, Stage 1B, Cat Scan- clear
HCG- 1.2, AFP-1.5, LDH-normal
BEP X 2 started 3-7-11
Bleo canceled for 2nd round, lung issues
EP 3-28-11 X 5 days, finished chemo 4-1-11
F/U cat scan 4/14/11 - Stable
3rd round EP as precaution because Bleo was cancelled, start 4-25, finished chemo 4-29-11, pneumonia 5-6-11
6-1-11, 8-3-11, 9-7-11, 10-19-11, 11-16-11, 12-18-11, 1-18-12, 5-8-12 Clear
So apparently now I'm having some irregular / difficulty breathing issues, but only when I'm trying to get to sleep. No issues at all during the day. As I'm going to sleep, for whatever reason my diaphragm starts to try to 'machine-gun' my lungs into really short quick breaths, like splitting each inhale cycle into 5 or 6 quick mini-inhales, and then 5 or 6 quick mini-exhales. WTF?? The first thing I would notice was that I would wake up with a huge cough or weird moan. I actually caught what my lungs were really doing by video taping myself with my phone cam though, and then managed at one point to be half-asleep and picked up on it and felt it too. Weird.
So yeah, I gave my oncologist's office weekend on-call line a ring.
The doc on call was clueless too, but I'm okay with that. We're trying to let my mom go home for a week tomorrow and get some R&R before my next cycle. Didn't want this to be one of those "oh **** that's bad, you need to get to the hospital for that STAT", in which case we'd still need my mom here to help out.
Anyways we talked about what I'd been taking. Before when I noticed just the stomach area heave I thought it was nausea related so I started taking some nausea meds which did nothing. Lunesta, nope. Other stuff, nope. Ativan x1 seemed to help a little but not much. He said to drop all the other stuff and just do Ativan x2, which it says in my paperwork I can do if I need to. Sounds good, will give it a try.
My head/sinus cold has drained into something that's aggravating my lungs now so I'm coughing a lot and on Robitussin, along with some antibiotics.
Steve - http://www.caringbridge.org/visit/stevep
February 2011 - DX Stage IIB, 90% Embryonal Carcinoma, 10% Yolk Sac
Mar-May 2011 - EPx4 per Dr. Bosl at MSKCC, administered locally in DC
6-Jun 2011 - post chemo CT shows one lymph node at 1.4cm remaining
22-Jun 2011 - RPLND with Dr. Sheinfeld at MSKCC, all 51 nodes removed negative
Dec 2012 - 1.5 YEARS ALL CLEAR!
Sorry to hear about Gene, MrsB. So far no issues here with either neulesta or neupogen shots. Haven't even been painful to get. Kinda shocked at the cost of the neulesta shot and that it basically didn't do anything for me.![]()
Thanks SP. He is feeling much better, cough is about gone and everything else seems to be working okHe is still tired a lot and has been sleeping most of the afternoon. I know, that shot is outrageous! Guess I'm not sure what it did for his counts, I just know they didn't drop too low. We should be all set to start round 2 on Monday.
Hope your rough spots get smoothed out. I notice Gene doing the funny breathing sometimes too but he hasn't complained of shortness of breath so I guess he's ok. It seems more noticeable after he has Bleo but you aren't on that one so not sure.
Tina, wife to Gene
Right I/O 2/21/11
60% embryonal carcinoma- 40% seminoma with L/V invasion, Stage 1B, Cat Scan- clear
HCG- 1.2, AFP-1.5, LDH-normal
BEP X 2 started 3-7-11
Bleo canceled for 2nd round, lung issues
EP 3-28-11 X 5 days, finished chemo 4-1-11
F/U cat scan 4/14/11 - Stable
3rd round EP as precaution because Bleo was cancelled, start 4-25, finished chemo 4-29-11, pneumonia 5-6-11
6-1-11, 8-3-11, 9-7-11, 10-19-11, 11-16-11, 12-18-11, 1-18-12, 5-8-12 Clear
Steve,
I wonder if your lungs are doing this simply because you have an upper respiratory virus?
There is something like "chemo cough." I thought it was related to Bleo, but maybe the other drugs in the EP regime cause this too? My husband coughed quite a bit through chemo although the onc said his lungs were clear. I always assumed it was because he had a chest tumor pressing on a lung, but we were told by the onc (and here on the forum) that a cough during chemo isn't unusual.
I hope you feel better soon and I think it is terrific that you didn't wait and contacted your doctor, since that is what they want patients to do.
Heidi
Husband - age 51
10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; ß-HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
11/1/10 4X BEP
12/7/10 End Cycle 2 - ß-HCG = 2; AFP = 4.6; LDH = 139 ; 4XBEP changed to 3 as tumor now 2.1 x 3.7 cm
2/15/11 - Post-chemo PET ; residual 8 mm x 2 cm
6/29/11 - Lung nodules stable or smaller, chest mass continues to shrink & markers all normal
Surveillance since 6/11
Heidi
Husband - age 51
10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; ß-HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
11/1/10 4X BEP
12/7/10 End Cycle 2 - ß-HCG = 2; AFP = 4.6; LDH = 139 ; 4XBEP changed to 3 as tumor now 2.1 x 3.7 cm
2/15/11 - Post-chemo PET ; residual 8 mm x 2 cm
6/29/11 - Lung nodules stable or smaller, chest mass continues to shrink & markers all normal
Surveillance since 6/11
Yeah it could be at least partly a chemo cough from some of the acid reflux stuff, but my wife, daughter, and son all have the same exact cough.It's one big miserable and sick household here.
Our daughter threw up from the cough last night. Poor thing. Emptied her dinner into her bed and we had to clean everything up. Son hasn't been too bad so far. I'll be shocked if at least one of them doesn't end up at home sick from daycare with me in the coming week while I'm trying to nurse myself back to as good as health as possible before my next chemo. ughhhh
Basically what is is a form of hiccuping aka "synchronous diaphragmatic flutter".
http://en.wikipedia.org/wiki/Hiccup
I said diaphragmatic spasming or 'machine-gunning' to the on-call doc, which is close enough for a lay person I think.
Chemo is listed as a potential source of "chronic" hiccups.
The double dose of Ativan did indeed calm that down last night, although I still had trouble sleeping due to a lot of phlegm coming up and choking me, forcing a big cough and a wake-up. Couldn't get comfortable in my bed, so I ended up downstairs propped up on the couch with some water on one side and a big bowl for whatever I needed to spit out on the other and managed to get a relatively good night of sleep. Mentally, the Ativan also helped me to avoid getting frustrated or pissed off too much when the umpteenth position I had tried in bed failed to work. Just got up, tried something else, and went back to sleep without being all annoyed. Good stuff.Chemotherapy—which can include a large number of different drugs—has been implicated in hiccups (some data states 30 percent of patients),[citation needed] while other studies have not demonstrated such a relationship. Many times chemotherapy is applied to tumors sitting at places that are by themselves prone to cause hiccups, if irritated.![]()
Don't like that I'm a little lost and disoriented this morning, but that's ok. Like I go to the kitchen for something and then can't remember what I was going for, or where the heck something is. Losing train of though. That kind of stuff. Getting a reasonably good night of sleep was worth it though. And yes, very glad I called. I did notice a big of the fluttering early on, but that settled out as the Ativan kicked in full. One less problem to deal with, meant only one problem left that I was able to figure out on my own.
errr.... well my wife was trying to figure out WTF went wrong with my WBC and other counts and how they got so low. Your counts are supposed to hit their minimums somewhere between 7 and 14 days after the start of your chemo cycle. The half-life of Neulasta is actually only 80 hours (she looked it up), so 3.3 days. It sounds like for me, the chemo still had plenty killin' left to do on Monday when I got the shot and my counts, which is how it managed to get so low by the end of the week. Will definitely have to have a chat with my oncologist on Tuesday when I have my next follow-up on how to manage this better next time. I just can't have my whole immune system go down like this again.Damn kids and wife. THEY'VE been the sicklings this year and I've been perfectly fine, until now. It's all their fault.
Made it through the night with and today so far with no new fevers and am definitely on the mend now. Got the 3rd and final neupogen shot this morning and was actually able to drive myself over so that was good too. Everybody is very very happy to see me up and around and able to function. Heck I am too. I hate being useless!
Steve - http://www.caringbridge.org/visit/stevep
February 2011 - DX Stage IIB, 90% Embryonal Carcinoma, 10% Yolk Sac
Mar-May 2011 - EPx4 per Dr. Bosl at MSKCC, administered locally in DC
6-Jun 2011 - post chemo CT shows one lymph node at 1.4cm remaining
22-Jun 2011 - RPLND with Dr. Sheinfeld at MSKCC, all 51 nodes removed negative
Dec 2012 - 1.5 YEARS ALL CLEAR!
Neulasta may have a short half life, but it is time released - that was what was explained to us by a nurse in the infusion center. It is the general equivalent of 10 days of Neupogen injections. After each Neulasta shot during week 2 of each cycle, the Neulasta continued to elevate the WBC for 14 days.
Are you getting Neulasta - or Neupogen?
I hope you all feel better soon! I can't imagine how miserable it must be for you all to be sick on top of the chemo.
Heidi
Husband - age 51
10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; ß-HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
11/1/10 4X BEP
12/7/10 End Cycle 2 - ß-HCG = 2; AFP = 4.6; LDH = 139 ; 4XBEP changed to 3 as tumor now 2.1 x 3.7 cm
2/15/11 - Post-chemo PET ; residual 8 mm x 2 cm
6/29/11 - Lung nodules stable or smaller, chest mass continues to shrink & markers all normal
Surveillance since 6/11
oohh, time release on the Neulasta. That makes more sense then, and also explains the cost!
I've been getting both. A Neulasta this past Monday, and then Neupogen x3, on Friday, Saturday, and today. The Neulasta shot definitely didn't elevate my WBC at all!! Wonder why? I definitely didn't have any sort of symptoms or back pain from the Neulasta shot so maybe it just doesn't work on me well or something.
Thanks!Originally Posted by hbr777
It was unbelievably bad. It made the Saturday and Sunday post chemo feel like a walk in the park.It took a day or two just to get the symptoms under control and I was incredibly restless and in a lot of pain in the meantime. Some of the stuff in our drug cabinet was expired unfortunately so had to have my mom go out and get some new stuff. By the time symptoms were under control late Wednesday I was so fatigued that I literally couldn't get out of bed on Thursday. I almost had to pee into my vomit bucket on the side of the bed but did manage to get to the toilet. Had to make a b-line straight back to bed though, because I'd start to fall asleep as I was going and then as soon as I'd fall back into bed I'd be 90% asleep already. When I was growing up my mom had a "sick bell" for us that we could keep by the side of our beds and ring so that she'd hear and know we needed something. I joked and said she should bring it. She couldn't find it but she did get a kids bike horn thingy which is pretty loud, really as more of a gag. I actually needed it though! I was getting super dehydrated and had to have her bring up a bunch of lightly iced water and some food just to maintain hydration. I didn't really even start to wake-up until around 8pm on Thursday. Slept the whole day. Wow.
So yeah, don't want to have to go through that again! LOL
Last edited by S P; 03-27-11 at 09:57 AM.
Steve - http://www.caringbridge.org/visit/stevep
February 2011 - DX Stage IIB, 90% Embryonal Carcinoma, 10% Yolk Sac
Mar-May 2011 - EPx4 per Dr. Bosl at MSKCC, administered locally in DC
6-Jun 2011 - post chemo CT shows one lymph node at 1.4cm remaining
22-Jun 2011 - RPLND with Dr. Sheinfeld at MSKCC, all 51 nodes removed negative
Dec 2012 - 1.5 YEARS ALL CLEAR!
Per my oncologist yesterday, the reason my WBC dropped so low and I got so sick even with the Neulasta shot was because it doesn't start to work until the WBC drops super low. So the 0.8 wasn't abnormal to see, and since I already had tons of stuff in my system waiting to attack it just pounced on me when given the opportunity and down I went. So like Chuck, my onc has added in proactive Neupogen shots serially for the whole week after my next cycle. Will get the Neulasta on Monday, Neupogen Tue, Wed, Thurs, and then I'll come in for a PA visit on Friday where they'll check counts and everything and decide if I need to keep getting shots over the weekend or not. Hopefully things will go better this next time around.
Oh my WBC was 22 at the office yesterday, LOL. My wife has been sick almost non-stop since my DX back in Feb so we haven't kissed. With a 22 WBC I said to hell with it and we smooched for the first time in like ages. That was nice. Man, little things to appreciate, heh heh.
I'm finally starting to shake off the stupid symptoms from this cold. Man, there is some truly nasty stuff going around my area lately and even healthy people are going down hard and even landing themselves in the hospital. Got my first relatively solid and restful non drug assisted night of sleep last night, so am feeling pretty good and well rested for a change.
That's good, because I have an interview lined up for Friday, LOL!
Just sorta happened. I've been unemployed since Nov '10 and because of this stupid cancer I've pretty much had to suspend job searching to take care of this. This opportunity is with some people I know though, some networking efforts finally bearing fruit. I was pretty open with them. I didn't flat out tell them what I have, but I did mention that I'm currently unable to work due to some health issues that I'm receiving treatment for, and that I might not be able to start working for a few months. They were ok with that, so I'm going in for the interview on Friday. It's really close by (I could walk to work, almost unheard of in the DC area!), with people I know, doing some pretty cool stuff. It's almost too good to be true so I'm not going to get my hopes up at all, but it sure would be nice to have something lined up after all of this crap is over.![]()
Last edited by S P; 03-30-11 at 08:48 AM.
Steve - http://www.caringbridge.org/visit/stevep
February 2011 - DX Stage IIB, 90% Embryonal Carcinoma, 10% Yolk Sac
Mar-May 2011 - EPx4 per Dr. Bosl at MSKCC, administered locally in DC
6-Jun 2011 - post chemo CT shows one lymph node at 1.4cm remaining
22-Jun 2011 - RPLND with Dr. Sheinfeld at MSKCC, all 51 nodes removed negative
Dec 2012 - 1.5 YEARS ALL CLEAR!
Nuelasta takes 7-10 days to start to increase your blood count. It isn't a time release, it causes stimulation of your bone marrow differently than Nuepogen. I believe the thought is it is less stressful on your bone marrow and will cause a higher quality of white blood cells by allowing the bone marrow to gradually increase production.
Not to mention it is only one shot vs. daily shots.
A drop down to 0.8 is normal. It is called nuetropenia, during this time be sure to check your temperature often and be extra carefull washing your hands frequently.
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
Maybe it was just how he was explaining it...
Anyways, hair starting to fall out today. I think I have Chuck beat.
His started to fall out after the first day into his 2nd round. Mine's starting to fall out already and I haven't even started the 2nd round yet. LOL
Steve - http://www.caringbridge.org/visit/stevep
February 2011 - DX Stage IIB, 90% Embryonal Carcinoma, 10% Yolk Sac
Mar-May 2011 - EPx4 per Dr. Bosl at MSKCC, administered locally in DC
6-Jun 2011 - post chemo CT shows one lymph node at 1.4cm remaining
22-Jun 2011 - RPLND with Dr. Sheinfeld at MSKCC, all 51 nodes removed negative
Dec 2012 - 1.5 YEARS ALL CLEAR!
Bookmarks