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#1
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Hello! My husband was diagnosed with 100% embryonal cell carcinoma in May of this year (2010). Biopsy showed it was 2.2 cm with surrounding blood vessels showing evidence of cancer cells. Had left orchiectomy. One lymph node is suspicious yet not technically 'enlarged'. Lymph node is in the area where the cancer typically spreads first. Oncologist gave three options, Surveillance, RPLND (and possible chemo) or 2 rounds of BEP/EP chemo. 3 weeks per round, totaling 6 weeks. First week is Monday-Friday 5+ Hrs. per day. Second week, Wednesday. Third week, Wednesday. Then repeats.
We chose the two rounds of chemo because of the aggressiveness of the cancer and because there was a 50% chance of it returning under surveillance and because of the surrounding blood vessels containing cancer cells and also b/c of the suspicious lymph node. He had no pain or any other symptoms prior to surgery- only the lump. Thank God we found it early. My question to all the experienced chemo-ers out there... what side effects should he be experiencing. He is definitely tired. He has had hiccups almost constantly and received a muscle relaxer for those. He is on Zofran, Lorazipam, the muscle relaxer and chlorazapine (spelling is bad- I'm sorry)- it's another nausea med. He hasn't been sleeping well at all. Wakes up with reflux and hiccups. Mind racing and can't fall back to sleep which makes his mornings and days after horrible. Any advice or experience anyone can share will be a great deal of help. Also... he has been feeling full constantly... he has been using the bathroom... but he said he feels 'full' in his throat and upper chest- almost like his food is backed up. Is this something that has happened to anyone? I appreciate any and all insight! |
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#2
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sorry to hear about his diagnosis and troubles with chemo....everyone reacts differently to therapy so side effects will differ with each individual....it sounds as though you are doing your best to manage the sides the best you can....
some have a rough time with chemo while others get thru pretty easily....just realize in the end you should get a cure and even though it may seem hard to believe life will return to normal....
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19 Nov 09 Dx Metastaic Seminoma 25 Nov 09 Right I/O....Primary tumor burned out Stage IIB 4 JAN 10 - 2 MAR 10 3XBEP 7 APR 10 All Clear....Surveillance |
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#3
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I have to ask: did you get a second opinion on the treatment plan? If this is really stage II, 3xBEP or 4xEP is necessary.
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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 Please click here to sponsor my 2010 LIVESTRONG Challenge Austin ride and help fight for people affected by cancer.
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#4
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It's stage 1a - blood vessels surrounding testicle were found to have cancer cells. The CT scan showed that the lymph node was 'noticeable' on the scan, but not large enough to be considered 'enlarged'. Apparently it has to be bigger than 3cm to be considered enlarged. I considered it suspicious- but maybe I shouldn't have. They mentioned it in passing- the Dr. didn't seem concerned about it and he had several scans. They came out clear. Dr. said that it could be just a more noticeable node. We have been going to Duke - which is a very notable hospital and cancer center.
I do appreciate you asking this though... it is something to speak to the Oncologist about. I know for sure that his scans were clear apart from one slightly noticeable node. Mainly just curious about that 'full' feeling if anyone had experienced it. My husband has a new appreciation for when I was pregnant... but it is robbing him of the ability to eat... Thanks!! |
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#5
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I've had a lot a problems with the full feeling...is it a feeling of bloatedness and a gassy pain at the top of the stomach,a lot like indigestion? Mine started at the start of my 3rd BEP cycle so I find it surprising that he's aleady feeling like that. I'm now on day 13 of cycle 3 and it's nearly gone. In terms of what causes it I still don't know, nor do the docs. I put it down to either: *my stomach lining generally being in disarray after 3 rounds of chemo *side effects of G-SCF injections which can include water retention, is he having these? *a stomach bug i picked up I can't put my finger on it because it started on day 4 and over the next 5 days i needed to eat because i was hungry but the food and drink just seemed to sit at the top of my stomach. Unfortunately my experience culminated in a very unpleasant and painful throwing up episode when I got home from my day 9 bleomycin injection. This I assume, was the result of finally not being able to fit any more food in. 5 hours later I was back in hospital (and I'm still here!) in a very bad way with a temp of 38.9oC which is why I suggested it could have been a stomach bug, or a combination of a lot of things. My case is difficult because of all the factors. If it's painful and causing real discomfort call your oncologist. It could be constipation as well, I didn't go to the toilet properly for 6 days (another factor which could have led to the throwing up) but was still eating and drinking, so he needs to be honest about that and use laxatives. Laying around and not doing much from the tiredness isn't great for constipation so taking the ocassional short walk might help move everything inside around a bit. Hope this helps, although I havn't really offered a solution!
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Right Orchidectomy.....15.03.10 Biopsy.....5.5cm seminoma CT.....7cm abdominal tumour 3 x BEP.....19.04.10, completed 23.06.10 1st follow up CT scan.....July 22nd. CT results, Aug 9th.....tumour shrunk to 2.1 x 1.6cm PET scan.....coming soon! |
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#6
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I'm on day 7 of my 2nd round of BEP and I have experienced everything you just described. Personally I think all these problems with nausea, vomiting, constipation, heart-burns, full feeling, gas, etc are all effects of the BEP on your digestive system. BEP actually slow down and impairs all of your digestive track from your appetite till food comes out the other end. Make sure he eats in small doses and often. But don't eat too much as his digestive system is impaired and takes longer to digest, causing excess food to come back up causing heart-burn. I got my first heart-burn because of chemo and let me assure you it wasn't pleasant. People say walking is helpful because it moves the intestines and massages them. I find all torso exercise that can help me relieve intestine gas (both ways) very helpful and relieving. I'm currently doing everything I can to get my digestive system going and would be more than happy to discuss any home remedies/diets. Eat papaya if you wanna poop!!
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20-Mar-10 Pre-OP markers - AFP 229.7, HCG 11.4, LDH 571 25-Mar-10 Chest x-ray clear, Abdomen & pelvis CT - Clear 02-April-10 Right I/O: traitor sized @ 5.9x4x3cm. 60% EC, 20% yolk sac, 20% immature teratoma w/ evident LVI 19-April-10 AFP 82.55, HCG <1, LDH 382 26-April-10 AFP 47.74, HCG <1, LDH 341 03-May-10 AFP 23.31 10-May-10 AFP 11.32, HCG <1 10-May-10 thru 28-June-10 2xBEP 28-June-10 Post 2xBEP: AFP 4.29, HCG<1 Currently in surveillance |
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#7
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Sounds to me like this is most likely indigestion, acid reflux and heartburn all combined in one. Which is not uncommon when you're putting yourself through the rigors of chemotherapy.
Nathan had some of these problems as well. They were usually resolved with a nightly Senokot (a gentle laxative) and Zantac. Nathan had the hiccups as well, which are a major pain in the ass! Apparently it's a side effect of the chemo and some of the anti-emetics they give you.
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Diagnosed June 2009. Stage III (mets to lung and 2 brain lesions). Orchidectomy, 4XBEP, Brain surgery, Brain radiation, 3XTIP, 1XHDC (with stem cell transplant). Passed away February 13, 2010. |
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#8
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Are you taking steroids?
They have given me the same symptoms post carboplatin. What you describe sounds very much like reflux and oesphagitis which would be helped by zantac. |
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#9
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We will try to do a little walking to help move things along - that's a good idea. He struggled with reflux before he was on chemo- he would wake up with esophageal spasms and cough cough cough... he had heartburn regularly (when he was eating unhealthy or not exercising) so I think adding the chemo was like fuel to the fire... literally! I'm assuming indigestion and heartburn are two different results of the same problem... he's never really had indigestion but it sounds like he is having that now... he said food seems to 'sit on top of his stomach'. G-SCF? Is that a steroid? He has been taking steroids through his IV to help w/nausea... his hands have swollen some... we are hoping they will go down before his next treatment so he can get his wedding ring off so it wont have to be cut off. His lungs were clear of fluid so it is probably due to all the fluids they've given him during this past week. |
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#10
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I appreciate the advice about zantac- we will definitely try that!! Yes he is on steroids...Thanks for the advice!
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#11
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First of all I want to say I'm so sorry for your loss... I noticed on the bottom of your post that he passed away in February. I am praying for you and his loved ones... We will try the Senokot and Zantac- hopefully that will help! He is on some kind of muscle relaxer for the hiccups but can't take it w/his nausea meds... so he's trying to live w/the hiccups rather than with the nausea... Ugh- so many meds! |
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#12
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Like you say eating small amounts often is good and try and stay away from acidic foods for a while. Good luck!
__________________
Right Orchidectomy.....15.03.10 Biopsy.....5.5cm seminoma CT.....7cm abdominal tumour 3 x BEP.....19.04.10, completed 23.06.10 1st follow up CT scan.....July 22nd. CT results, Aug 9th.....tumour shrunk to 2.1 x 1.6cm PET scan.....coming soon! |
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#13
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Just want to second (or third) the Zantac thing. I had a miserable first round until I started on it. Since I did, I've had a much easier time. I'm also on day 7 of round two, and I feel great compared to last time. Acid reflux was definitely my biggest problem. Get him going right away cause it takes a couple days to really kick in. Just take it once every 12 hours. I usually feel it coming on again around the twelve hour mark, so I don't waste any time.
Joe
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Right I/O 4/19/10 Stage I B 80% embryonal 20% classic seminoma CT Scan 5/10 showed mets in abdomen and lung Restaged to III A 4xEP 5/10 - 7/10 CT Scan 7/10 Normal Surveillance |
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#14
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As far a minimizing side effects, best thing I can tell you is to keep hydrated. And anything that comes out of his body should be considered toxic. (It would be good if he had his own bathroom during treatment.)
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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! |
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#15
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I got the indigestion/reflux or heartburn around my 2nd round. I could barely sleep at night it was so bad. If the other suggestions dont work, ask your doc for a prescription for Protonix. I believe it is a prescription form of Zantac or Prilosec. All I know is it worked great. I took til about a week or two after round 4. It comes in a generic with a long name, so it only cost me $4. That definitely helped.
Mike
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12/30/09-diagnosed, 5cm mass on right, 5mm nodule on left, abdomenal lymph nodes of 3cm and 4cm 1/14/10-Right I/O, removed nodule and 1/3 of left testicle 1/21/10-Path back: 60% yolk sac, 20% teratoma, 15% EC, 5% chorio. L/V invasion - Present 2/8/10- 4/26/10 Chemo 4xBEP, blood clot in lungs, port removed, 2 PICC lines after 1st one leaked 5/21/10 - CT shows lymph nodes 4.7 & 2.8cm, but no active cancer 6/23/10 - RPLND scheduled w/ Dr Sheinfeld @MSKCC |
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#16
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#17
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#18
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#19
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Anyone want to share how their once-weekly treatment affected them? Anth goes tomorrow for his Wednesday treatment and we don't really know what it will be like- if it will be like his first day on chemo or his last- when he was most tired... just curious! If anyone would like to share I would appreciate it!
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Husband diagnosed w/100% Embryonal Cell Carcinoma 5/11/10 Left Orchiectomy 5/12/10 CT scan shows no mets. Stage 1a- cancer cells in surrounding testicular blood vessels. Chemo : 2XBEP started 6/07/10 as precautionary treatment Duke Medical Center. |
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#20
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Well, oddly enough, my once a week bleo was a cake walk. In fact other than feeling sleepy from the premeds, it actually seemed to make me feel better for a day or two.
I suspect it was the pre-meds that produced this effect. Dave
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Jan, 1975: Right I/O, followed by RPLND Dec, 2009: Left I/O, followed by 3xBEP |
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#21
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I'm not too sure to be honest. I think - but others will be able to confirm - that things are done slightly different over here in the UK. My BEP involves me going into hosp for 3 days (days 1-3) and being linked to chemo and hydration via IV pretty much constantly for the 3 days, then I go back for a day visit on days 9 and 16 and have the bleomycin via an injection. It's my last ever (hopefully) bleo injection today,eek!!
There's lots of threads on here about making chemo/hospital stays easier and easing the side effects so you and your family are in good hands. Have a good rummage around.
__________________
Right Orchidectomy.....15.03.10 Biopsy.....5.5cm seminoma CT.....7cm abdominal tumour 3 x BEP.....19.04.10, completed 23.06.10 1st follow up CT scan.....July 22nd. CT results, Aug 9th.....tumour shrunk to 2.1 x 1.6cm PET scan.....coming soon! |
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#22
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Mine were about an hour, start to finish, although sometimes it took up to an hour & a half, if the infusion center was busy.
Dave
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Jan, 1975: Right I/O, followed by RPLND Dec, 2009: Left I/O, followed by 3xBEP |
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#23
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My bleo only days were ok during cycle 1. During cycle 2, I would get a deep, dull headache about 90 minutes after the infusion. In cycle 3, my bleo only days included the post-infusion headache and a lovely "run over by a truck" feeling. I found about the only thing that made me feel better was a 0.5mg ativan induced nap when I got home from the infusion.
John |
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#24
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Hey everyone... my husband just finished his second week-long treatment and only has two wednesday's to go... yesterday was friday and his last cisplatin treatment, today he has been worse than any other day since chemo. he has been constantly nauseated and vomits every few hours, is very fatigued and just miserable. Has this happened to any of you and if so, when during the treatment did you start to feel better? I hate being so helpless...
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Husband diagnosed w/100% Embryonal Cell Carcinoma 5/11/10 Left Orchiectomy 5/12/10 CT scan shows no mets. Stage 1a- cancer cells in surrounding testicular blood vessels. Chemo : 2XBEP started 6/07/10 as precautionary treatment Duke Medical Center. |
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#25
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I never got that sick, but did feel pretty bad the weekend after my full weeks, & it got worse with each course. I typically felt a bit better by Mon or Tue.
Dave
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Jan, 1975: Right I/O, followed by RPLND Dec, 2009: Left I/O, followed by 3xBEP |
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#26
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Hi Aj,
I'm really sorry to hear he's having so much trouble. If it makes you feel any better, I'm sitting up at 3 am with a case of heartburn as we speak. Waiting for my Zantac to kick in The only thing I'm wondering is whether or not he's taking his anti-nausea meds? Did they give him amend to take on the first two days after treatment? I also have compazine to take the edge off whenever I feel nausea coming on. May be different for me though because I'm on 4xEP, but those meds do the trick for me. I hope he feels better!Joe
__________________
Right I/O 4/19/10 Stage I B 80% embryonal 20% classic seminoma CT Scan 5/10 showed mets in abdomen and lung Restaged to III A 4xEP 5/10 - 7/10 CT Scan 7/10 Normal Surveillance |
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#27
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Hi. Sorry to hear he's having a hard time. Like Dave, I typically felt pretty bad for two or three days after the treatment, and then began to feel better.
Hope he starts to feel better soon.
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Nick Embryonal Carcinoma; Seminoma. 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: Neutropaenic sepsis during cycles 1 & 3. I/V antibiotics and isolation. |
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#28
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#29
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Hi AJ,
The best remedy is to take anti-nausea meds. He needs to ask for them and take them BEFORE he feels the nausea. Mary An
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CaregiverSon Josh 22 yr dx 3/5/08 IIIC NonSeminoma affected lung, kidney liver back & tumor/clots in vena cava & celiac artery 3/7/08 L I/O 3/30/08 PostOp surgery 4XEP (VP16 & Cisplatin) 3/12-5/25 LDH > 5000 & AFP 145 (3/5 pre-op) LDH 563 & AFP 4 (5/26 after 4Xchemo) off blood thinners 3/18/09 Surveillance per Dr E 8/4/08 *4/10 ALL CLEAR! Self 1/29/09 dx thyroid cancer metastasized to right lung 2/10 thyroid removed 4/17 rx RA131 5/11/10 cancer still active 7/17/10 2nd RA131 on 7/16/10 |
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#30
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![]() Dave
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Jan, 1975: Right I/O, followed by RPLND Dec, 2009: Left I/O, followed by 3xBEP |
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