Hi Everyone that Reads. I'm new to this. I have been diagnosed with testicular cancer. I have had my orchiectomy of the left testical and doctors weren't telling me that I had swelling of lymph nodes in abdomen. I ealised when they let me go on honeymoon and I ended up in severe pain that this then grew to a really large tumour. I have now been on BEP 21 day cyle and this is day 15 of the second cycle. I have been really ill the past couple of weeks and very agitative. Not being able to cope with anyone. I realise this is now probably due to trinitus which cannot be helped. I have had bleomycin topup today and feel fine but am getting a slight pain in my left armpit and somewhat of a small lump. I am really paranoid that the chemo has stopped working. My markers went from 395 down to 40 and 13500 down to 200 after the first cycle but i cant help get the feeling now that maybe it has stopped working. Along with the armpit i have been having a real pain on the left side of my throat as though i have a swollenm gland. Can anyone confirm if there is something to be worried about as I dont want to worry my wife and family yet feel something isn't right. Sorry for the long post its the only way i can explain how i'm feeling. If you need to ask anything please do.
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End of Second Cycle 5 Day BEP Am I Getting Paranoid
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Sharkiness:
It's good to see that you found us, welcome. I wouldn't worry at all about all of the pains, lumps and bumps you’re feeling but make sure you mention them to your doctor just to be on the safe side. This chemo is bad stuff and you whole body is effected by it. From the way your markers fell after the first round I would have to say that the chemo is working just as advertised, you might even say the chemo is brilliant.
I'm sure you know this but each round will be a bit harder so make sure you take all of your anti-nausea meds and if your feeling anxious mention that and they can give you something to calm you down. Don't try and tough anything out here your body is not only fighting cancer but it's trying to protect you from the chemo and that combo can do crazy things to you.
How are you doing with your eating and fluid intake?Last edited by dadmo; 10-02-07, 09:29 AM.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.
Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.
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Hey Sharkiness -
I did the 4 cycles of BEP and I remember a couple of the day 15 Bleo pushes really rocked me good. Sore throat...ache...that sort of thing. I also had lymph nodes that swelled pretty good and gave me back ahce (that was how I found the cancer in the first place). The ache went away shortly after the chemo began, though.
Give your doctor a shout and let him know what you have experienced. I will go out on a limb and say the Bleomycin is the cause of the sore throat and some of the aches.
Stay strong.Brett, Stage IIIB Non-Seminoma Extra-Gonadal Germ Cell Tumor 7/12/06, 4xBEP 7/31/06 - 10/17/06, enlarged retroperitoneal lymph nodes found 5/22/07, bi-lateral RPLND and Left I/O 6/05/07, 2xVIP 7/16/07 - 8/11/07, spot on spleen found 9/13/07 - DOH!, PET scan sked 10/29/07
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Hi Sharki -
I'm sorry you're worried. I have to agree with Navy - my husband had 3 rounds with Bleo and would feel achy, also with a sore throat and have awful chills after - he got a fever of 103 after the second shot as well. We realized that if he doubled the 2 liters of water recommended on that day he could really reduce the symptoms to basically nothing. So his last few shots gave him a mild sore throat and/or ear ache, but that was it.
I would call a doctor or nurse anyway to see what they say.
Hope that helps.Rob and Stacy
DX: 3/10/05, AFP: 15,047, L I/O: 3/28/05, Yolk sac tumor & teratoma, Stage IIIC, 3xBEP & 1xEP: 4/4/07 - 6/25/07, AFP: 14, RPLND 8/10/07, w. left kidney removed. 10/19/07, AFP: 1.9
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Thank you all so much,
I will mention to my doc about the anxiety. Been drinking fluids and eating ok. I do admit though I have stopped taking the anti sickness and the reflux medication. So I will go back on these. Suppose they are supplied for a reason. I have been advised to use salt water for my throat and gums by the doctor but i'm not sure what good it is doing albeit this is excellent for the ulcers as they go after a day or so. The pain in my ear and gums is excruciating and giving me bad headaches. The co-codomol won't even work so I've had to return to using oramorph which is a morphone medicine. Worst about this is obviously the drowsiness and lack of co ordination when using. I'm hanging in there though. I think this site is amazing a community where eveyone can share their experience. Again thank you all so much. I will definitley be keeping in touch.
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Shark, please do ask about the Ativan, good point Robert, I actually assume too much at times. At our cancer center ALL people getting chemo also get Ativan, so I assumed everyone was given that. I was wrong. The Ativan is mild but will ease your anxiety and best of all...it works with your anti-nausea meds to help them work BETTER...and that has got to be a great thing!
For your mouth sores, there is a mix called "Magic Mouthwash"...I am sure someone here...HELP please...has the list of what is in it. It will help ease the pain and help in healing. If someone does not respond I will post a new header called "Magic Mouthwash" and see if we can get the details for you.
I know this is a tough ordeal but you are doing great. Hang in there and ask your doctor about the Ativan.
mCo-survivor with husband Boyce, Diagnosed 7-11-06, orchiectomy right testicle on 7-12-06- Stage 3A: Mixed germ cell tumor with inguinal seminomatous and kartotypic carcinoma. One tumor over 10 cm, second tumor 4 cm, Chemo 4xBEP: Bi-lateral RPLND Dec 2006, nerve sparing but left sterile.
Current DVT
Current testosterone replacement therapy, Testim.
"You must abandon the life you planned, to live the life that was meant for you" ~wisdom I have learned from my family on this forum
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Hi Sharkiness,
Hope the second cycle is going well.
If you just had a tumour in your testicle (with no metastic disease) then upon removing the tumour you would expect your bHCG and AFP to fall with a half life (time take for your bHCG/AFP concentration to halve) of 2 and 5 days respectively.
However, things are a little more complicated when you are treating metastic disease with chemotherapy, because the chemotherapy is killing some of the tumour, but some of the tumour that is still alive is still secreting proteins.
An good response to chemotherapy is to expect a bhCG half life of between 3-4 days, and a AFP half life of less than 7 days, when treating metastic disease with chemotherapy.
Your bHCG is halving about every 3½ days and your AFP is halving at about every 6.3 days, which means you are an excellent responder to chemotherapy. My half lifes which I tracked religiously were very similar to yours. Your first cycle is incredibly important, because it illustrates whether you are a good responder to chemotherapy, or if you maybe chemo-refractive. You have shown to be an excellent responder, and the chemo is really working on you.
Sit tight, get through the next couple of months of chemo, which I know won't be pleasant. It's a small price to pay for getting on with the rest of your life.
By the way, I'm a born scouser who left Liverpool for the bright lights of London many years ago. Are you having your treatment in Clatterbridge?
Good luck.
DavieDiagnosed March 2006, Stage IIB, 3cm RP mass
10% Seminoma, 90% Non-Seminoma (Embryonal, and a tiny amount of choriocarcinoma and teratoma)
Prechemo bHCG-2648, AFP-582
3xBEP March-June, markers normalised
3 months postchemo - 1.2cm residual RP mass
RPLND September 2006 - mostly necrotic tissue plus tiny amount of well differentiated teratoma
June 2009 - TRT commenced to help out my lefty
May 2011 - check-up, all clear
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Originally posted by MargaretFor your mouth sores, there is a mix called "Magic Mouthwash"...I am sure someone here...HELP please...has the list of what is in it.Scott, [email protected]
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
Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!
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Originally posted by ScottMaalox, Benedryl, and Lidocaine (antacid, antihistamine, anesthetic). Mark Kantrowitz has a great page on this topic, at this link.
This mouthwash should really help, you will need a doc to get it for you because Lidocaine is not over the counter meds. Good luck.Co-survivor with husband Boyce, Diagnosed 7-11-06, orchiectomy right testicle on 7-12-06- Stage 3A: Mixed germ cell tumor with inguinal seminomatous and kartotypic carcinoma. One tumor over 10 cm, second tumor 4 cm, Chemo 4xBEP: Bi-lateral RPLND Dec 2006, nerve sparing but left sterile.
Current DVT
Current testosterone replacement therapy, Testim.
"You must abandon the life you planned, to live the life that was meant for you" ~wisdom I have learned from my family on this forum
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Update
Hey alll,
I promised an update,
I have finished all chemo. I got a really god mouthwash from the hospital and an anaesthetis for my throat. my hair is starting to grow back. My tumour didn't shrink but markers are now low. AFP went from 360 - 2 And HCG from 13900 - trace. I now need an open RPLND which I am freaked out about specially as I have been advised I will more than likely lose a kidney due to size and location of tumour ( by the kidney and size of kidney). So not much is keeping me from thinkng bout it and I gotta wait bout six weeks so i am gonna return to work after six month absence. hopefully that'll do the trick. speak soon
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Hi Shark....hard to sit here and tell you 'not' to be nervous about the RPLND, but I can say that it scared the hell out of both my husband and I and we both can now look back and say that once you are done with the chemo, the hard part is behind you. Due to the location and size of my husband's tumor, losing a kidney was also possible but I am sure you have a great doctor and they will do what is life saving for you. They may get in there and be able to save the kidney. Even with out it, you should have normal function.
If/when you decide to have the RPND, there are many good tips we can all share with you to make it easier...so please keep us posted.
The best news of all is your markers....your numbers are AWESOME!Co-survivor with husband Boyce, Diagnosed 7-11-06, orchiectomy right testicle on 7-12-06- Stage 3A: Mixed germ cell tumor with inguinal seminomatous and kartotypic carcinoma. One tumor over 10 cm, second tumor 4 cm, Chemo 4xBEP: Bi-lateral RPLND Dec 2006, nerve sparing but left sterile.
Current DVT
Current testosterone replacement therapy, Testim.
"You must abandon the life you planned, to live the life that was meant for you" ~wisdom I have learned from my family on this forum
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Hi -
read thru this....
Coping with radiation, chemotherapy, RPLND, or surveillance: treatment issues, test results, surveillance reports. Talk about what's going on with you!
sounds like you are responding fine to chemo...
and the side effects are all things that others here have experienced - of course be certain to share with your docs...but it is chemo and your body is going to react to it...my toughest bout was after the 2nd in patient week...
my 3rd cycle felt easier than the 2nd....but then I was focused on the finish line...
pete- 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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