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#1
10-07-09, 05:35 PM
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How do you cope?
Long time reader, first time poster.
My boyfriend was diagnosed with TC back in June. Since then he had his orchiectomy and 4 rounds of BEP. Still in the process of trying to hear that lovely word "remission". I guess my question is, as a caregiver, how do you cope? The past 4+ months have been the hardest I've ever gone through in my life. How do you deal with the anxiety, worry and stress? What do you do to ease your worries? How on earth can I get my brain to stop thinking about cancer? How do you stay positive and hopeful? Really looking forward to the light at the end of the tunnel... 
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#2
10-07-09, 07:12 PM
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Welcome and thanks for posting...
Being a caregiver is one of the hardest things you will do in your life. We worry, love, care for, and grief as we watch our loved one go through this. I told me son many times that I would take his pain and suffering if I could. Of course he would have taken mine too. That is what love is. And what your guy needs is all the love you can muster. There are going to be days where he is hard to love, but love you will do anyway. I think one of the best ways to deal with the strain, is to talk to people who understand what you are going through. Since it will be awhile before you hear the words you want to hear you need to have a support system as much has he does. I also tried to do things just for me.. a pedicure, dinner with my friend..... You will probably not stop thinking about cancer. It is just near impossible. I still think about cancer everyday. Staying positive.... is hard. But when you love someone, you do it when you are with them. I cry myself to sleep still. But Les very seldom saw me cry. I only cried when he cried. We are hear for you.... The group here will be a great support for you and your boyfriend. I hope I have offered you some help.... Love, Pam
__________________
Son Les diagnosed 5/7/07-Right I/0 5/9/07-Stage 3C Non-seminoma Mixed Cell Germ Tumor-Tumors in liver, lungs, lymph nodes, brain-4XBED Finished 7/31/07 HCG 9 tumors smaller, brain lesion gone-9/30/07 HCG 999-TIPx4 started 10/2/07, IU 11/29 Told he had Choriocarcinoma Syndrome HDC and Stem Cell Transplant to begin 1/3/08 Finished Transplant 3/1/08 HDC and Stem Cell Transplant Failure 3/20. 4/17 RPLND & Liver resection, Molecular profiling of tumor, 6/2 Hospice Services- Passed Away 12/12/08
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#3
10-08-09, 01:16 AM
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Pam is right when she's says you think about cancer every single day. Despite the fact that my son is doing well right now, I still feel like I'm waiting for the other shoe to drop. I wish like hell that this feeling would go away but it hasn't. Maybe it's still too soon since he was just diagnosed slightly over a year ago. The stress is tremendous but we get through it. What choice do we have? We have to be there for them and we just do what needs to be done. Hang in there and lean on this group as much as you need to. They're a great bunch of people and they've been a huge help to me.
Cheryl
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#4
10-08-09, 01:55 AM
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Alone time helps, but somehow you are constantly plagued by that cloud called cancer. I like to go on this site. It gives comfort to know that the road Im traveling has been traveled before by people who are willing to share their experienve. Ive cried, that helps for a while but mostly just leaves me with a headache.
Talking on here is the best coping mechanism I have found. We're all hear to listen and help eachother in anyway we can. You can do this, I know it. Kim
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#5
10-08-09, 11:24 AM
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I've written this here before....but early on, just after surgery, my wife was "hounding" the surgeon....what do you think, what does it look like, will he need chemo, more surgery etc....
of course he had no idea...no staging had been done yet.... he looked at me and said "pete, we won't know until you get staged...but I can tell you this, whatever it is, it is, and whatever it is, you will have to deal with it" I was so mad, I could have punched him.....and then, literally 10 seconds later, this overwhelming sense of power came over me... I realized he was right....whatever it turns out to be, I'm going to have to follow some process, go step by step, and deal with it.... generations have said this different ways......."only thing we have to fear is fear itself" etc... the point is though, that all the worrying in the world will certainly not help....be glad you are where you are at this stage in the game, and worst, worst case, if there is a relapse, you will have to deal with it then....the key is accepting these are the cards you have been dealt, and make the best of it.... when all else fails, go volunteer some time to spend with the kids in the cancer ward....whatever worries you thought you had, will be wiped clean...I promise you that. Something about caring and giving to others when you feel worried a down....its a great remedy. I know you know all of this....but sometimes it helps to be reminded of it.... best wishes, pete
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- lump first noticed 11/20/2005 - I/O right Dec 8, 2005 - 95% embryonal / 5% seminoma - normal markers PRE surgery - no vascular invasion, tunica free of cancer, epididymis free of cancer, lungs free, lymph free - Stage I diagnosis - surveillance - mid feb '06, beta hcg slightly elevated = 4.6...small enlarged lower node seen on CT scan... - 3BEP began feb 20, 2006 - finished 3 BEP, last bleo, april 17, 2006 - CT scan, blood markers, chest..all clear - back on surveillance
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#6
10-08-09, 11:43 AM
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Today my boyfriend is scheduled for an MRI of his brain to "clarify" things after he had his last CT scan done.
All day yesterday I was calm and reserved, because the fact is, we don't know what's going on yet...and whatever happens we'll just have to deal with it. But this morning, I've been sitting here with that stirring in my stomach and anxiety. Trying to calm myself down. I keep reminding myself that there is always a plan, and once we know, we just have to press on and hope for good results. Thank you guys for the support, I really should have been contributing here way earlier, but never did. I'll keep you updated.
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#7
10-08-09, 12:34 PM
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one last thing....
accept that there are ups and down, feeling good at time and then feeling no control over things at other times....that's just part of the process....you are not going to be able to just "be fine" with all of this....when you think of it this way, you won't get down on yourself when you are worried....its natural..... misery loves company...just remember the best part about this site, is we have all been there and are here to support one another....just part of life's journey.
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- lump first noticed 11/20/2005 - I/O right Dec 8, 2005 - 95% embryonal / 5% seminoma - normal markers PRE surgery - no vascular invasion, tunica free of cancer, epididymis free of cancer, lungs free, lymph free - Stage I diagnosis - surveillance - mid feb '06, beta hcg slightly elevated = 4.6...small enlarged lower node seen on CT scan... - 3BEP began feb 20, 2006 - finished 3 BEP, last bleo, april 17, 2006 - CT scan, blood markers, chest..all clear - back on surveillance
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#8
10-08-09, 01:05 PM
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I deal with the stress by fighting against cancer every day since the day my son was diagnosed.
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Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since. "It's never too late to become the person you might have been." - George Elliot
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#9
10-08-09, 05:10 PM
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The way I cope is to just focus on the next step of the process. If my son has a doctors appt. I focus on good results for that. If its a CT scan I focus on that. Blood tests...etc. My biggest problem was to look too far down the road. This caused many sleepless nights and anxiety. Consider this a long (albeit not fun) journey and take it step by step. This will also help you collect your thoughts if you need to write them down. The best way is to just share them here. Your not only helping yourself, your inevitably going to help someone else. Oh yeah, some of my best coping therapy has been when my son was talking to another TC Warrior over the phone or in person. This just seems to melt my stress away. Thats my two cents. GOOD LUCK!
Larry
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#10
10-08-09, 07:20 PM
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Well, the prognosis is that Nathan has two lesions on his brain. The largest one being 0.9cm (0.35"), the other one being so small they could barely see it on the scan. So pretty much I had prepared myself for this news, so it wasn't shocking. I know Nathan was disappointed primarily because he thought he was a lot closer to remission than he is now.
Regardless, his oncologist, Dr. Kollmansberger assured us that they are still aiming to cure this, and he'll be consulting with his close oncologist friends regarding this, one being Dr. Einhorn. I was really excited to hear this, as I've heard so many good things about him. Then we met with the brain surgeon who will be doing the surgery and he was VERY confident that he'll have no problem taking care of the lesions. They'll be operating on the larger one, and then doing one high concentrated dose of radiation on the other. He said that the tumors would have taken another year to show symptoms, so they're really slow and treatable. Soooo, we took two steps back, but are glad we'll be taking the steps forward to kicking this cancer in the ass.
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#11
10-08-09, 08:03 PM
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Sweetie,,
I am sorry about the news but happy about the plan. This is just one more hurdle to the end. Try and stay strong and we are here for you. I am also HAPPY that Dr. E is involved. Love, Pam
__________________
Son Les diagnosed 5/7/07-Right I/0 5/9/07-Stage 3C Non-seminoma Mixed Cell Germ Tumor-Tumors in liver, lungs, lymph nodes, brain-4XBED Finished 7/31/07 HCG 9 tumors smaller, brain lesion gone-9/30/07 HCG 999-TIPx4 started 10/2/07, IU 11/29 Told he had Choriocarcinoma Syndrome HDC and Stem Cell Transplant to begin 1/3/08 Finished Transplant 3/1/08 HDC and Stem Cell Transplant Failure 3/20. 4/17 RPLND & Liver resection, Molecular profiling of tumor, 6/2 Hospice Services- Passed Away 12/12/08
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#12
10-08-09, 10:20 PM
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I am so sorry to hear about those lesions. And I do think you're an angel for wrapping your love around your BF. You could give most of us lessons on how to cope. One thing I will tell you is that us guys are wired to be terrible patients, so if you can cope with the grumpiness, you can handle anything.
Another thing is that this probably is the hardest thing you have been through, and if it is the hardest thing you will face for the rest of your long lives, you will have been blessed and lucky. You will beat this.
__________________
Diagnosis: 05Sept07 Right I/O: 13Sept07 Seminoma IB Surveillance: All clear: 17August09 Next check: 21December09 Visit our Philly 2009 LOVESTRONG Team Page
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#13
10-11-09, 04:21 PM
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While this is not the news you wanted to hear, I'm confident that Dr. Einhorn can lead you through this. Best of luck with what's ahead and we'll keep you both in our prayers.
__________________
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#14
10-12-09, 04:53 PM
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Sounds like the doctors have a handle on this and are very positive. Hang on to that because they don't normally sugar coat anything. Keep fighting the good fight and kick this thing in the rear. We will be praying for y'all.
Larry
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#15
10-12-09, 07:14 PM
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I am also sorry to read of the brain lesions. As for coping, I just do what I have to do. Jay didn't go to his EGD appointment today which made me angry with him. That is one of the harder parts for me. I want to just give him love and attention yet life hasn't stopped because of cancer. I worry what if he doesn't make it another year? Will I have done enough? Did I give him enough? When he was going through chemo and after the RPLND, I slept very lightly and was there everytime he called. I would go to work and worry about if he and our son were okay when I had to. I cope by looking up everything about it. He doesn't want to know. I am his advocate. I am there at every appointment and yes, I think about it daily. It has changed our lives in ways unimaginable before June 8 of 2008. Jay said once why don't they ever tell me I am in remission. He thanked his doctor for saving his life after his RPLND and the doctor said he trying to. I cope by coming on here. I always think there are those who have gone through worse. I always think that it could be worse.
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Co-survivor Diagnosed Mixed Germ Cell tumor Carcinoma and classic seminoma StageIIC 6*8cmbulky June 26-08 Left I/O June 26-08 4*BEP July-08-Sept-08 Mets to Abdomin, Change to Stage III, mets to chest lymphnodes, 6*8 cm Jul 08 Markers normalized Nov08, residual tumor 3*2cm in abd. 13mm in chest. Spinal Stenosis,Neuropathy RPLND feb 09 Found all three: Cancer, teratoma and scar tissue B-HCG up, recurrent TC,
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#16
10-13-09, 12:31 PM
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To ask your question about coping, to be honest I really don't know how I have. I have been through every stage of coping, denial, angry, crying, everything. My fiance has cancer, so that in it's self is hard. At first the doctors wouldn't tell me anything unless his family was there, and then they wasn't going to let me go back and see him before they did a major procedure until he refused them to do it until he seen me. Then if your man is anything like mine he feels no matter how close you all are that he shouldn't put you though this and you deserve to be with someone that you don't have to deal with cancer. You just need to let him know that you will be there for him not matter what, and let him know that your love means more than anything. I have to work full time and I can't take off FMLA because he technically is not related to me yet (even though we were going to be married this past summer). You just see what is more important sometimes, I have been short on my check anywhere from 5-10 hours short and somehow I have dealt with it. Just make sure if that happens your job is ok with it. I've read up on Chad's cancer and sometimes find myself focusing more on the negative parts, so you just got to snap back to your strong mode and see there is still hope. I don't want to get all religious on anyone, but my faith has helped me through a lot of this. I don't care if you are Jew, Muslim, Christian, Wiccan or even any other type of religion there is. If you read they all have things of hope and encouragement. If you don't have a religion, just read a book of encouragement, or something that will keep your spirits up. Try to stay positive around your man, no matter how grumpy he gets (and trust me sometimes you will want to choke him if he wasn't in the shape he was in at the moment). If it gets to that point, go outside take a breather and just remember to breathe! One step at a time, don't take too much in. Remember to try to get your rest and don't let yourself get down. You can't do any good helping him out if your down yourself.
Oh, and I haven't cried infront of Chad, but I have cried. I think it helps let the stress out. So let yourself cry when you feel like you can. If you have to go somewhere and just scream to let out your fustrations. You have a long road ahead of you, and know you have people to talk to on here.
__________________
 Diagnosed 6/30/09 mediastinal yolk sac tumor Stage 3 Found evidence of cancer in lymph nodes in path report 3x (cant remember this one I will fill in later) 2x VeIP 1 VP16 (just finished 10/14) 7/28/09 AFP 1172.4 - labs from hosp 9/15/09 AFP 293.0 -- labs from hosp 9/26/09 AFP 421.7 -- this was a different lab they said may be differences in the labs from the hospital 9/29/09 AFP 352.4 -- labs from diff lab (same as 9/26) still showing decrease other than the differences in labs.
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#17
10-13-09, 05:31 PM
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Thank you guys for all the supportive words. It seriously helps so much to know that I'm not the only one going through this. And the comfort of knowing that the people treating my boyfriend are experts in this field and we have some of the best involved in curing him.
We got word from his brain surgeon, and they want him in pre-op tonight, so like his orchiectomy, he'll be on an "emergency" wait list to get in for surgery. We'll get the details tonight, but it could very well be a lovely long wait to get him in. Nothing like being pulled into surgery at 1 am. =P Regardless, we're gonna bring movies and make a date of it. I'll be making sure I bring my book (20,000 Leagues Under the Sea), and my bag of embroidery projects to keep myself occupied. I really have to say that my work has been a blessing throughout all of this. Despite having 28 hours owed, at this moment, they don't give me any grief and have been really understanding. At least things are moving forward and good news will be on the way. Anyways, I'm just rambling...I'll update you guys more once I know.
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#18
10-13-09, 06:06 PM
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Dearest She....
I am so sorry that this will be along night for you guys. It is a good idea to make a "date" of it. I will continue to pray for you both. Love, Pam
__________________
Son Les diagnosed 5/7/07-Right I/0 5/9/07-Stage 3C Non-seminoma Mixed Cell Germ Tumor-Tumors in liver, lungs, lymph nodes, brain-4XBED Finished 7/31/07 HCG 9 tumors smaller, brain lesion gone-9/30/07 HCG 999-TIPx4 started 10/2/07, IU 11/29 Told he had Choriocarcinoma Syndrome HDC and Stem Cell Transplant to begin 1/3/08 Finished Transplant 3/1/08 HDC and Stem Cell Transplant Failure 3/20. 4/17 RPLND & Liver resection, Molecular profiling of tumor, 6/2 Hospice Services- Passed Away 12/12/08
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#19
10-14-09, 03:40 AM
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Best wishes this evening for Nathan and for you. Our neighbors up north sure have interesting ways of celebrating date nights! Do tell us your name angel when you get a chance.
As for coping... "Things work out best for people who make the best of the way things work out." - John Wooden
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Maria *Hubby Andy diagnosed 02/13/07, Left IO 02/16/07 *Stage 1A Non-Seminoma (65% Immature Teratoma / 35% Embryonal Carcinoma) *RPLND 04/27/07 Lymph Nodes-ALL CLEAR *Complications from Chylous Ascites so Laparotomy 05/03/07 *No food for 10 weeks, TPN only *07/18/07 Removed drains, tubes, picc line *CT Scan 07/31/07-ALL CLEAR *CT Scan 02/12/08-ALL CLEAR *Hydrocele surgery 06/19/08 *CT Scan 9/30/08 and 03/06/09 shows <cm left lung nodule - under surveillance
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#20
10-14-09, 04:13 AM
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I guess I hadn't formally introduced myself. I'm Nicole, my boyfriend is Nathan and we'll officially have our 1 year dating anniversary at the beginning of December. But our history goes back at least 8 years or so of being really close friends.
Got Nathan admitted into the hospital. Had to wait in an emergency bed for a while, poor guy those things are so uncomfortable. Finally got him into a regular bed and by 11 pm he was sound asleep. They didn't have any sleeper/recliner chairs for me so I came home. Plan on going back there early tomorrow morning, so we can "hurry up and wait".
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#21
10-14-09, 07:53 PM
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Nicole,
Hope you were able to get a little sleep yourself last night. Did Nathan have his brain surgery yet? Thinking about you two...... Ally
__________________
Husband DJ: Dx 7/16/2008 Right I/O 7/25/2008 90% Embryonal, <5% Yolk sac,<5% Seminoma, <2% Mature teratoma Began 3xBEP 9/8/2008, changed to 2xBEP + 1xVIP because of changes in oxygen diffusion. Completed 10/24/2008 All Clear Ever Since 
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#22
10-14-09, 08:37 PM
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Sorry you're in the "hurry up and wait" phase. It is the worst part. I hope all went/will go well with surgery. You're in my thoughts and prayers.
-Mary
__________________
Greg (partner): March 2005- non-seminoma stage I-A (90%embryonal, 5%Yolk Sac, 5% *something else*(can't find path. report!); May 2005 L-RPLND- ALL CLEAR!; Recurrence October 2008 (Stage III: paraspinal and lung masses; primarily Yolk Sac; AFP over 24,000; vertebral fracture due to spinal compression); Oct. 08-Jan. 09 4xBEP; March 2009- All Clear and Surveillance
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#23
10-15-09, 02:20 AM
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So after going home and being told the surgery would be tomorrow (Wednesday), I figured I'd get back to the hospital at 7 am in case they pulled him in early. Well JUST as I'm out the door, Nathan texted me saying they were pulling him into pre-op. So I rushed like mad to get there, and when I did had a hell of a time trying to find him. But alas I did, got to wait for him a bit, then cried like a baby when they took him away.
Then I was back in "hurry up and wait" mode, which I remedied by catching up on my romantic comedy movies. Obviously the only time I'm allowed to do this is when Nathan is a) gone b) asleep. Hahaha. [sarcasm] I don't quite understand why guys don't like these types of movies? [/sarcasm]. Anyways, "The Proposal" and "The Ugly Truth" were an amazing distraction. The surgeon came to see me after about 2 hours and told me that everything had gone beautifully. Which was good news and alleviated any of my worries. Otherwise it was a mostly uneventful day. Nathan slept most of the time and I kept myself busy. They're planning on having him at home by the weekend!
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#24
10-15-09, 03:38 AM
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Hi Nicole...glad that Nathan is out of surgery and resting up. You catch up on some Z'sss too. Hoping for the best...there are lots of shoulders here to lean on.
__________________
Maria *Hubby Andy diagnosed 02/13/07, Left IO 02/16/07 *Stage 1A Non-Seminoma (65% Immature Teratoma / 35% Embryonal Carcinoma) *RPLND 04/27/07 Lymph Nodes-ALL CLEAR *Complications from Chylous Ascites so Laparotomy 05/03/07 *No food for 10 weeks, TPN only *07/18/07 Removed drains, tubes, picc line *CT Scan 07/31/07-ALL CLEAR *CT Scan 02/12/08-ALL CLEAR *Hydrocele surgery 06/19/08 *CT Scan 9/30/08 and 03/06/09 shows <cm left lung nodule - under surveillance
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#25
10-15-09, 08:14 AM
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Quote:
I'm glad Nathan is through surgery and doing well. Here's to a quick and full recovery.
__________________
Scott, scott@tc-cancer.com right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since I'm growing a moustache for Movember to change the face of men's health. Please click here to support the cause.
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#26
10-15-09, 10:47 AM
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So glad to hear surgery was a success. You'll have to tell Nathan that brain surgery is an extreme strategy for getting out of Sandra Bullock movies
I made it through "Hurry up and Wait" with the Sookie Stackhouse books (the books on which True Blood is based; total trash reads!). We ladies do what we have to do -Mary
__________________
Greg (partner): March 2005- non-seminoma stage I-A (90%embryonal, 5%Yolk Sac, 5% *something else*(can't find path. report!); May 2005 L-RPLND- ALL CLEAR!; Recurrence October 2008 (Stage III: paraspinal and lung masses; primarily Yolk Sac; AFP over 24,000; vertebral fracture due to spinal compression); Oct. 08-Jan. 09 4xBEP; March 2009- All Clear and Surveillance
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#27
10-16-09, 03:19 AM
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Hello Nicole,
I'm just catching up with your thread now, I'm glad to hear that the surgery went well and that Nathan managed to duck out of some romantic comedies. It he can't use "brain surgery" as an excuse to avoid The Notebook, then what can a guy use? I am in Vancouver as well, I'm glad to see that you two are being treated by Dr. Kollmansberger. He was/is my oncologist as well, and has been great thoughout my treatment. Ask him lots of questions! He likes it when we do that.  This forum is a great group, feel free to sound off on any problems or questions you two may have. Keep us updated on the progress! Adrian
__________________
Diagnosed Bilateral TC August 2008 Left I/O August '08, Stage I Teratoma Right I/O November '08, Seminoma Surveillance- All Clear Nov '09 Testosterone Cypionate TRT
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#28
10-16-09, 03:18 PM
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Nathan is HOMMMEEEE! So happy to have him here. I'm sure he'll be glad to get a full nights rest tonight. At ICU they were waking him up every 2 hours to take vitals!
Anywho, all is well. He says he feels better than he has in weeks, so that's a good sign. They'll be setting him up for his radiation appointment soon with AFP and HCG bloodwork done twice a week. At least we're one step closer to getting this dealt with. As for now it's a rainy day in Vancouver and I think we're gonna stay in and have some hot chocolate! AdrianE: Yeah, Dr. Kollmansberger has been great so far. Glad Nathan has had nothing but really talented people helping him throughout this.
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#29
10-17-09, 06:27 PM
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Hooray to being home!
__________________
Maria *Hubby Andy diagnosed 02/13/07, Left IO 02/16/07 *Stage 1A Non-Seminoma (65% Immature Teratoma / 35% Embryonal Carcinoma) *RPLND 04/27/07 Lymph Nodes-ALL CLEAR *Complications from Chylous Ascites so Laparotomy 05/03/07 *No food for 10 weeks, TPN only *07/18/07 Removed drains, tubes, picc line *CT Scan 07/31/07-ALL CLEAR *CT Scan 02/12/08-ALL CLEAR *Hydrocele surgery 06/19/08 *CT Scan 9/30/08 and 03/06/09 shows <cm left lung nodule - under surveillance
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#30
10-25-09, 01:25 PM
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This thread is going to turn into my little TC blog. So it's been over a week since surgery. On Wednesday morning Nathan woke up with a fever and general "not-well-ness" feeling. So we got an appointment at the cancer agency. After much long wait, they did a general physical and didn't find anything abnormal and scheduled for blood tests. We didn't hear anything back regarding the blood tests, so no news is good news I guess. The doctor said it was most likely a flu virus that Nathan picked up and to give it time.
Poor guy, just when he was starting to feel better he gets the flu. I guess with an immune system that isn't 100% these things are easy to catch (considering the season). He has an appointment with his oncologist on Friday, so we're hoping for some good news and scheduling for the next stages of treatment. Really want to keep this ball rolling.
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#31
10-25-09, 01:33 PM
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Angel ( I am going to call you Angel because I am sure you are one!!!)
I am glad the surgery is behind you guys. Some times the dreading is worse. Dont wait to long if you dont get a call about the blood work. Sometimes we have to make our loved ones as important to the doctor as they are to us. We will continue to be here for you. I used this site as my blog also. Much love, Pam
__________________
Son Les diagnosed 5/7/07-Right I/0 5/9/07-Stage 3C Non-seminoma Mixed Cell Germ Tumor-Tumors in liver, lungs, lymph nodes, brain-4XBED Finished 7/31/07 HCG 9 tumors smaller, brain lesion gone-9/30/07 HCG 999-TIPx4 started 10/2/07, IU 11/29 Told he had Choriocarcinoma Syndrome HDC and Stem Cell Transplant to begin 1/3/08 Finished Transplant 3/1/08 HDC and Stem Cell Transplant Failure 3/20. 4/17 RPLND & Liver resection, Molecular profiling of tumor, 6/2 Hospice Services- Passed Away 12/12/08
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#32
10-29-09, 12:29 AM
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Well, we've now been at the hospital for 24 hours. Nathan came down with the cold, but after a week wasn't feeling any better. So I basically dragged him here and it was a good thing I did. Despite the brain surgery his tumor markers have continued to rise. His HCG was up to 9800 as of Monday.
They did a CT scan of his chest and brain and found that the cancer was no longer shrinking, but growing again. So his oncologist Dr. Kollmansberger has consulted with both Dr. Einhorn and Dr. Foster and have decided to start him on 2 cycles of VIP followed by 2 HDC's. As well they're going to treat the remaining brain met with a dose of radiation soon. As for now, my poor boy is stuck in the hospital for a week, but my mind is put to ease when I meet the wonderful nursing staff here. Seriously amazing people. I don't know about the rest of you, but they inspire me so much with their amazing bedside manner and knowledge. Anywho, despite it NOT being the news we wanted to hear, we both still feel very positive. From what I've read and researched, this treatment can still give very good results. Keeping our fingers crossed, doing our prayers and sending good karma out into the world.
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#33
10-29-09, 01:05 AM
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My prayers for you both too. Keep positive. Sad to hear the news.Glad that you are staying positive.
__________________
Co-survivor Diagnosed Mixed Germ Cell tumor Carcinoma and classic seminoma StageIIC 6*8cmbulky June 26-08 Left I/O June 26-08 4*BEP July-08-Sept-08 Mets to Abdomin, Change to Stage III, mets to chest lymphnodes, 6*8 cm Jul 08 Markers normalized Nov08, residual tumor 3*2cm in abd. 13mm in chest. Spinal Stenosis,Neuropathy RPLND feb 09 Found all three: Cancer, teratoma and scar tissue B-HCG up, recurrent TC,
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#34
10-29-09, 06:14 AM
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I'm sorry to hear about this setback. It's a good thing it has been detected at this stage. We're sending good karma right back to you both. I have every hope that the forthcoming treatments will be effective.
__________________
Nick Diagnosis: Embryonal Carcinoma; Seminoma. Treatment:Right I/O August 2001. Surveillance August - December 2001. Relapse: December 2001. Stage III, mets in lymph nodes and lung. 3xBEP Dec 2001 - March 2002. Complications: Infections during cycles 1 & 3. I/V antibiotics and isolation. Then I reassessed my life, quit my job and spent the next four years studying poetry, and now I'm a teacher and I love it! Please SPONSOR MY MOUSTACHE for Movember!
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#35
10-29-09, 11:33 AM
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Quote:
Ally
__________________
Husband DJ: Dx 7/16/2008 Right I/O 7/25/2008 90% Embryonal, <5% Yolk sac,<5% Seminoma, <2% Mature teratoma Began 3xBEP 9/8/2008, changed to 2xBEP + 1xVIP because of changes in oxygen diffusion. Completed 10/24/2008 All Clear Ever Since
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#36
10-29-09, 06:11 PM
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This thing hasn't beaten you guys yet. Lot's of folks are cured with HDC, and yes nurses are amazing people.
__________________
Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since. "It's never too late to become the person you might have been." - George Elliot
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#37
10-29-09, 08:51 PM
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Sweetie,
I am sorry about this news. HDC often is the cure. I will say a prayer for you guys... Keep postive and keep loving, Pam
__________________
Son Les diagnosed 5/7/07-Right I/0 5/9/07-Stage 3C Non-seminoma Mixed Cell Germ Tumor-Tumors in liver, lungs, lymph nodes, brain-4XBED Finished 7/31/07 HCG 9 tumors smaller, brain lesion gone-9/30/07 HCG 999-TIPx4 started 10/2/07, IU 11/29 Told he had Choriocarcinoma Syndrome HDC and Stem Cell Transplant to begin 1/3/08 Finished Transplant 3/1/08 HDC and Stem Cell Transplant Failure 3/20. 4/17 RPLND & Liver resection, Molecular profiling of tumor, 6/2 Hospice Services- Passed Away 12/12/08
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#38
10-31-09, 03:01 AM
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Hey guys!
So we're on day 2 of the new chemo. As far as I can tell it's going relatively well. The pain Nathan had in his chest has subsided and he's able to talk a lot more without having to cough. Spending the weekend at the hospital with him. Hopefully we can watch some movies, relax and nap. It's so much easier for me to do that when he has such great nurses taking care of him, AND I don't have an untidy house breathing down my neck. Unfortunately the untidy house is waiting for me when I get home in the evenings. Other than that not much to update. Just staying positive and taking it one day at a time.
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#39
10-31-09, 07:57 AM
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Glad to hear it's going well so far.
__________________
Nick Diagnosis: Embryonal Carcinoma; Seminoma. Treatment:Right I/O August 2001. Surveillance August - December 2001. Relapse: December 2001. Stage III, mets in lymph nodes and lung. 3xBEP Dec 2001 - March 2002. Complications: Infections during cycles 1 & 3. I/V antibiotics and isolation. Then I reassessed my life, quit my job and spent the next four years studying poetry, and now I'm a teacher and I love it! Please SPONSOR MY MOUSTACHE for Movember!
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#41
10-31-09, 05:53 PM
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Hey there,
I'm glad you read the warning signs and got to the doc. HDC is pretty impressive, and I'm glad to read your doc's in conversation with the IU team. Don't feel one bit of guilt about a messy house! Take care of you and Nathan! Dishes will get washed and floors will get vacuumed some time! -mary
__________________
Greg (partner): March 2005- non-seminoma stage I-A (90%embryonal, 5%Yolk Sac, 5% *something else*(can't find path. report!); May 2005 L-RPLND- ALL CLEAR!; Recurrence October 2008 (Stage III: paraspinal and lung masses; primarily Yolk Sac; AFP over 24,000; vertebral fracture due to spinal compression); Oct. 08-Jan. 09 4xBEP; March 2009- All Clear and Surveillance
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#42
11-01-09, 09:31 PM
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Hey guys!
As you can imagine, Nathan isn't particularly stoked about being in the hospital getting chemo. How did you keep your guy entertained, motivated and (somewhat) happy during their stay in hospital? Looking for any hints or tips on chemo snacks, chemo distractions that have proven effective...
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#43
11-01-09, 10:32 PM
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Not really the same thing, because my husband got to leave every day, but he spent loads of time on his laptop. Not just using the Internet, but we went to the library and checked out all kinds of DVDs and watched them on the computer. Documentary type movies passed the time real well, and the library had tons of them.
Books? Magazines? Nintendo Wii/Playstation games? Crossword puzzles? Daily newspaper? Board games? I made a countdown on a Post-It Note pad to count down how many days of treatment he had left. Seemed overwhelming at first, but before long it was all done. Good luck, you are doing a great job as a caregiver! Ally
__________________
Husband DJ: Dx 7/16/2008 Right I/O 7/25/2008 90% Embryonal, <5% Yolk sac,<5% Seminoma, <2% Mature teratoma Began 3xBEP 9/8/2008, changed to 2xBEP + 1xVIP because of changes in oxygen diffusion. Completed 10/24/2008 All Clear Ever Since
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#44
11-02-09, 12:20 AM
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Hoping the week in the hospital flies by quickly and that Nathan can keep distracted. Call us geeks, but Andy and I made a routine out of watching Jeopardy and we'd play against each other and keep score.
__________________
Maria *Hubby Andy diagnosed 02/13/07, Left IO 02/16/07 *Stage 1A Non-Seminoma (65% Immature Teratoma / 35% Embryonal Carcinoma) *RPLND 04/27/07 Lymph Nodes-ALL CLEAR *Complications from Chylous Ascites so Laparotomy 05/03/07 *No food for 10 weeks, TPN only *07/18/07 Removed drains, tubes, picc line *CT Scan 07/31/07-ALL CLEAR *CT Scan 02/12/08-ALL CLEAR *Hydrocele surgery 06/19/08 *CT Scan 9/30/08 and 03/06/09 shows <cm left lung nodule - under surveillance
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#45
11-02-09, 11:21 PM
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Hello again,
I'm so sorry to hear about the latest news. I'm glad to hear that the nursing staff are looking after you both so well though. He is very lucky to have someone so strong and supportive like you at his side! Keep us updated on how the chemo is going. Adrian
__________________
Diagnosed Bilateral TC August 2008 Left I/O August '08, Stage I Teratoma Right I/O November '08, Seminoma Surveillance- All Clear Nov '09 Testosterone Cypionate TRT
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#46
11-03-09, 07:22 PM
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So the past couple of days Nathan has mostly been sleeping. Which I can fully understand, first off he's getting insane chemo infusions, they have him on fluids through the night so he's having to get up to pee, and I'm sure he's insanely bored.
He hasn't had his radiation treatment yet, but sounds like that will happen on Thursday. He's already been bugging the nurses to know when he can go home. I find myself counting down the hours at work until I can leave to go see him. Even if he is just sleeping, I'm so much more at home when I'm beside him. Today I'm finding myself feeling a lot more "blah". But this could be hormones. Not sure if this is TMI, but since Nathan is most likely going to be infertile after this I've decided to go off my birth control. Not sure if this is a mistake or not, because it'll take a while to equalize itself. I just don't want to have any unnecessary mood swings. Anyways, off to go spend time with my darling. Thank you guys for listening.
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#47
11-03-09, 08:17 PM
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Dear Angel.......
You guys are so luck to have each other to love. I understand wanting to be at the hospital even if he is sleeping. I played lots of Suduko and read lots of books. Try and take care of yourself. You might want to talk to your doctor if you having bad mood swings. I went on anti depressants when Les got sick. Give you guy a big hug.... Love, Pam
__________________
Son Les diagnosed 5/7/07-Right I/0 5/9/07-Stage 3C Non-seminoma Mixed Cell Germ Tumor-Tumors in liver, lungs, lymph nodes, brain-4XBED Finished 7/31/07 HCG 9 tumors smaller, brain lesion gone-9/30/07 HCG 999-TIPx4 started 10/2/07, IU 11/29 Told he had Choriocarcinoma Syndrome HDC and Stem Cell Transplant to begin 1/3/08 Finished Transplant 3/1/08 HDC and Stem Cell Transplant Failure 3/20. 4/17 RPLND & Liver resection, Molecular profiling of tumor, 6/2 Hospice Services- Passed Away 12/12/08
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#48
11-03-09, 09:43 PM
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Hi Angel and Nathan
Thinking of you guys from across (many!) miles. Hope today is a good day for you. One day years from now I hope you are both able to look back on all of this as the worst time of your lives but one that made you an unbreakable couple. If you can get through this together there is nothing you can't beat Best Wishes from Australia Mike
__________________
approx. 28 April 08 - Noticed lump 23 June 08 - Diagnosed (Yep! Left it 2 months!) 30 June 08 - R I/O (NSGCT 90% EC Stage 1) 28 July 08 - Start 2XBEP 3 Sept 08 - Finished chemo
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#49
11-05-09, 11:02 PM
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Hi Angel
Just wanted to say hi, my story sounds similar to yours, I have throgh the hospital stays, the boredom, the worry, if you need someone to chat to feel free to send me a line. Stay strong. Dawn Ann
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#50
11-07-09, 11:49 AM
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Hi there
My husband's story is similar to yours. He had 4 x BEP too. Over a 4 week period during which had his chest surgery and brain radiation, his bHCG went up to 2400 from 60! After one VIP cycle, it dropped to 133! We are on the second cycle now and are both hopeful for a similar decrease! Keeping our fingers crossed! I know you and Nathan are going to have 2 x VIP followed by 2 x HDC. I just wanted to let you know that VIP has been effective for us thus far! We have been fortunate to receive the chemo on a day basis over 5 hour stretches. It can be boring, no matter how many books and magazines one can bring in. I knit so that helps. At home, when he's feeling better, we play the xbox alot, watch movies and surf the internet. Thankgoodness for technology! Is Nathan back home yet?
__________________
Husband diagnosed April 09 with Mediastinal Germ Cell Cancer Mets-1 in liver, 2 in brain, multiple nodules in lungs bHCG 60,000+ 4xBEP from April-July 09 (bHCG 17.5) Rising bHCG-1 new lung lesion found 2xVeIP from July-Aug 09 (bHCG dropped from 200+ to 60) Medial Thoracotomy (Path report indicates necrosis) Rising bHGC-more brain mets-Whole Brain Irradiation; Left lung masses growing 2xVIP
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