TC Patient .. Treatment Diary ( DAILY UPDATED! )

[TC Patient]

TC Patient .. Treatment Diary ( DAILY UPDATED! )

Hello guys!*
I wanted to share my experience with testicular cancer. I hope that help some people here.!

First off all : I am 24-year-old male.

I will start by stating the problem I had:
At the end of April 2012, I observed that my right testicle was becoming larger. I started to freak out! I went to the ER in a local hospital near to where I live, that was the 6th of May 2012. I got my testicle checked by the doctor in the ER. I have realized that it something serious when a dozen of doctors came to me 10 minutes later lol. I have been admitted to do more test at the hospital ( tests include UltraSound of the testicle and tumors markers in the blood ).*

2 days later I have been told by the urology doctor that it was a testicular tumor and the testicle must be removed! It was a shock for me and I have asked for a second opinion.

The next day I have visited another hospital which is one hour away from my home. Guess what! They have admitted my too to do the tests again ( though I gave them the UltraSound I have ).

The results came out and I have been diagnosed the same!*

Lab report :
CBC, RFTs and LFTs : all normal
AFP : 2262 ng/ ml ( Really high )
BHCG : 4531 mIU/ml ( very high!)*
LDH : 197 U/L

CT scan : no enlarged lymph nodes.
UltraSound : 8*5 cm tumor!

That was Wednesday the 9th of may. I decided to have the orchidectomy on Sat May 12. And I had it.

After that I have been seeing an oncology doctor and he said that he "thinks" I do not need chemotherapy. My urology doctor was not satisfied and I have been referred to another specialist hospital.

Anyway, my new doctor decided that I *have to get 3 cycles of BEP 5-day since what I have is a germ cell tumor. Today the 18th of August 2012 was my first session. It was going great until I started writing my story here! Now I feel that I need to throw-up! This is all what got from the side effects so far and I will keep you updated everyday and I will be taking questions any time! If someone also wants to share something with me here, Please!

[ColdCanadian]

I will be starting shortly as well so I will follow this with great interest. Mine is just seminoma but it's the chemo side effects that have my mind wondering. I get my schedule next Thursday. So type on, and thanks.
Greg

[TC Patient]

since you have mentioned that yours is seminoma, my tumor is mixed GCT

I will be having my second session of cycle one within 3 hours.

[bryce-ord]

The side effects don't get bad until day 4. Day 7-8 is when it gets really bad. And at day 10 you start to feel better. It's not easy, but it is only for a short time. I finished chemo 2 months ago and went back to work 5 weeks ago (I am a steel fabricator, very physical job). I have felt/looked normal for about the last 4 weeks (I have to shave every day, and will even need a haircut in the next 2 weeks).

[TC Patient]

The side effects don't get bad until day 4. Day 7-8 is when it gets really bad. And at day 10 you start to feel better. It's not easy, but it is only for a short time. I finished chemo 2 months ago and went back to work 5 weeks ago (I am a steel fabricator, very physical job). I have felt/looked normal for about the last 4 weeks (I have to shave every day, and will even need a haircut in the next 2 weeks).

Hi,
What side effects did you have and what was the most annoying one ?

[TC Patient]

Cycle 1 day 2 :

Everything is going great! So far so good. No side effects.

[AustinsMom]

As Bryce-ord mentioned, the side effects did not hit my son until day 4 and were worse on day 5. He came home and slept 23 hours a day days 6 thru 8. It was the only cycle he was nauseous for. Once he switched to KYTRIL though, it made all the difference. You also may want to get some "Magic Mouthwash" just in case. This is one time in your life when it's OK to take advantage of popping those meds. They REALLy make a huge difference, but you have to stay on top of the side effects. Just resign yourself to the fact you are going to be very tired and not have much of an appetite at times and it's OK to sleep and eat whatever appeals to you for this short period of your life.

My son's most annoying side effect was......me......telling him to drink, drink, drink.

It will be over before you know it. Austin is 6 weeks out now and looks and feels great.

Wishing you an easy ride through this!

Diane

[TC Patient]

As Bryce-ord mentioned, the side effects did not hit my son until day 4 and were worse on day 5. He came home and slept 23 hours a day days 6 thru 8. It was the only cycle he was nauseous for. Once he switched to KYTRIL though, it made all the difference. You also may want to get some "Magic Mouthwash" just in case. This is one time in your life when it's OK to take advantage of popping those meds. They REALLy make a huge difference, but you have to stay on top of the side effects. Just resign yourself to the fact you are going to be very tired and not have much of an appetite at times and it's OK to sleep and eat whatever appeals to you for this short period of your life.

My son's most annoying side effect was......me......telling him to drink, drink, drink.

It will be over before you know it. Austin is 6 weeks out now and looks and feels great.

Wishing you an easy ride through this!

Diane

Thank you for sharing. Since you both mentioned day 4, I will be preparing to kick its a** !

Well, what was the second most annoying side effect ? Can I ask when did he lose his hair ?

Thank you

[AustinsMom]

I just asked Austin and these are the side effects that bothered him the most:

Nausea - ( He only got sick to his stomach after day 5, but we switched from Zofran to Kytril , which is much more costly but worth it, and though he still felt a little nauseous on days 4 and 5 of each round, it was quite manageable. If this hasn't been mentioned already, you need to take the meds before you feel sick. You are probably being given them in the clinic, but need to take them at home as well.)
Mouth Sores- ( His situation was a little different as he had braces on when he started and they aggravated the situation to the point his mouth was full of them and he landed up in the hospital until his ANC went up. Once they were removed, he had only one sore Rounds 2 and 3. Regardless, they hurt. I believe he went through 4 or 5 bottles of Magic Mouthwash. You can get a prescription for it, but its about $30 a bottle and the ONLY thing our insurance company did not cover ! I believe there are 3 ingredients in it and you can make your own for much less.)
Constipation- ( That was an issue on and off for him, but Senna and Miralax were helpful.)
Indigestion - ( He used Ranitadine and popped Tums like M&M's.)

Austin complained once or twice of ringing in his ears, a problem I know has effected others much more. It lasted only a few minutes though. He did not have any cravings or aversion to foods or drinks, but mostly ate bland comfort food and drank water or juice. He did not have much of an appetite on some of those long weeks and lost 19 lbs. in total. He had periodic lung tests and had no issues there. During Round 1 he had some vision problems, but only for a couple of days. The Bleo pushes really effect some of the guys with "shake and bake" and make them miserable. It was very minimal for Austin. He mostly just felt crummy a few hours after the treatment and slept it off. One more thing, though minor...... Heidi mentioned that scratching your body can cause permanent or semi permanent marks to be left that are more noticeable with a tan, from the Etoposide, I think. We just spent 3 weeks at the beach and I just noticed some dark marks on his back and arm, but in the scheme of things......

Austin's hair began to fall out around day 15. We ended up shaving it, but left a little on the top of his head which remained throughout. His eyebrows and lashes thinned out a tiny bit, but are back now. He lost some of his body hair, but not all. His facial hair, of all things, came back a little after each round. He went on a trip two weeks after finishing chemo. When he returned a week later, he had a noticeable "5 O'Clock shadow" on his head, which 3 weeks later is a good 1/2 inch long. However, BEST of all......once again....he knows everything, we know nothing. Everything is always our fault, not his. Everything he can't find is because someone else has misplaced it, certainly not him.....yada, yada, yada.

Keep the questions coming!
Diane

[ColdCanadian]

Hi Diane,
I chuckled with you comment about you being the most annoying side effect. It might be a Diane thing as my wife is a Dianne... Sure hope she's not reading this but if she is, let me just mention the wonderful support great moms and spouses can be.

Lyrics from a song... "we can take the Fathers hand, have him lead us to the promised land, but we need a mom who understands, pick us up when we fall." Of course those guys also had a song titled, "If God can love turkeys"!

And, eventually most of us realize that at least one of those things we blamed someone else for, was really our own fault.

Thanks for the notes on the side effects.
Greg

[TC Patient]

Diane,

Wow! Thank for the very helpful information.

Cycle 1 day 3 :
Everything is going good. No side effects so far except the annoying hiccups I had especially when I drink water.

I asked for the post-op and last tumor markers level. I have been told all normal.

Waiting for day 4

[TC Patient]

Cycle 1 Day 4 :

A little nausea during the day. Doing great during the night.

[TC Patient]

Cycle 1 Day 5 :

I have been disgarged. Home sweet home! I am doing fine at home. Cannot see any seriuos side affect. I have been given injections to take for 5 days. I have to go back on day 8 to take Bleomycin.

[AustinsMom]

So glad to hear things are going smoothly for you! The injections you are giving yourself are probably Neuprogen and will assist in keeping your WBC from staying too low.

Don't be surprised if you want to sleep quite a bit over the next few days. If you've been given prescriptions for meds, especially for nausea, take them. From what I have read here, once you're sick, they do no good.

The Bleo push is quick and easy in the sense you don't need all the hydration. (Austin had two hours before and 4 hours after of hydration on those long, long days.) You don't need it with Bleo.

I am curious though about your blood markers. Did they normalize after the I/O? Also, do you know what the pathology of your tumor was ( Embryonal, Yolk Sac, Teratoma, Choriocarcinoma, Seminoma etc?)

This is a lot for a young guy to go through. Be sure to keep all your records together with copies of all your tests. It was also helpful to me to keep a notebook, which I refer back to all the time, with notes, questions and answers etc.

Wishing you the best,
Diane

[TC Patient]

Hi Diane,
Yes actually they are Neuprogen.

for the updates, Cycle 1 Day 6 :

* In bed all the time!
* Vomited two times within one hour.
* Nausea.

Cycle 1 Day 7 :
* In bed all the time.
* just vomited one time.
* Nausea.

In general, Day 7 was better than day 6.

about the blood markers, Yes they all went normal after the I/O.

Yes I do. The pathology report says "Immature Teratoma (50%), Empryonal Carcinoma (30%), Choriocarcinoma (10%) and Yolk Sac (10%)" I am not sure if this is good or bad

I have a question. I have been given Premosan 10 MG tablet. It is written that "take 1 tablet every 6 hours when needed". The question is .. should I take it when I have nausea and before vomiting ? or after vomiting ?

Thank you for your help.

[AustinsMom]

From what you're saying, it sounds very similar to Austin's experience. It was not until after Day 5, in the car on our way home....naturally......that he got sick. Long 30 minute drive, but thankfully I stuck a bucket in the back seat that morning!

The PREMOSAN is to help control nausea and hiccups as well. Usually those need to be taken ahead of time as a preventative measure. I have never been one to pop pills or encourage others to do so, HOWEVER, watching the difference it made for Austin during this time in his life,I realized it was OK and gave him the max dose allowed. I automatically gave him the anti nausea drugs like clockwork throughout all of Round 1. By Round 2, during the second week, he tapered off of them. He did have indigestion throughout and the Ranitadine helped with that.

IF the Premosan is not doing the trick, there are other meds out there, so don't be shy about asking your Doctor or Nurses. Austin switched (to Kytril) after days 5 and 6, when he became sick to his stomach and he never had anymore issues. He FELT nauseous at times, but never vomited from the chemo again.

That is great your CT Scan was clear and our markers normalized. What I am wondering about is, it looks like for 3 months post I/O you were essentially on surveillance and then j decided to get chemo....Is that right? What was the reason for this? Did you get your markers drawn again and have a CT Scan right before chemo? It sounds like you've gone through a few different doctors and hospitals along the way, so I'm glad you finally found a specialist you are comfortable with.

As for your pathology report, I know the chemo will blast the EC, Yolk Sac and Chorio. EC can be aggressive and move quickly and Chorio even more so, so you definitely don't want to mess with Chorio. As for immature teratoma, it is my understanding that IF it spreads, it CAN be tricky and morph into other forms of TC, so it will probably be watched carefully. It sounds like you are doing exactly the right thing though.

I expect in a day or so you will start feeling better and better. How are the Neuprogen injections going? Just STAY ON TOP OF THOSE ANTI-EMETICS and you'll probably feel MUCH better!!

Diane

[Davepet]

. The question is .. should I take it when I have nausea and before vomiting ? or after vomiting ?.

Most oral anti-nausea drugs aren't very effective if they don't stay down & get absorbed by your system. Some folks take them prophellactically, I waited until I felt a bit queasy to take mine & never actually vomited throughout 3xBEP so that worked for me.

You might want to take a look at what drugs.com says about it (link points to generic):

http://www.drugs.com/cdi/metoclopram...g-tablets.html

Dave

[ColdCanadian]

I start BEPx3 Monday and am sure curious/concerned as to how you are doing.
Greg

[iatr1]

@coldcanadian I am on day 2 of my second cycle if BEP. I found the worst thing about I was not know in what to expect but (in my opinion) the thought knowing you are going to have chemotherapy is worse than actually having it. I have also heared from a few other people that overall its not an as bad experience as people expect. My first cycle was fine just a few minor side effects from day 3 through To day 6 - bit fuzzy head, slightly tired, and hiccups, loss of apatite. I found that going for walks and light exercise helped and eating a light balanced diet with small but frequent portions when possible. Day 9 - 21 I felt normal again just like before it started, maybe i was one of the lucky ones who didn't experience any nausea (yet). On day 19 my hair started falling out o I just shaved off but for me I quite enjoyed this part as I get see how I look bald and I don't have to shave my beard anymore as that has just stopped growing which is a bonus I suppose.

Hope it goes well for you! Keep on top of the medication they give you and you should be fine.

[iatr1]

I forgot to mention, I know this isn't my post but thought another experience may contribute to people interested in. I hope your chemo is also so going well.