My story and upcoming chemo

[David07]

I had a testicle removed Jan 31st, 100% Embryonal Carcinoma.

Have sense had scans and blood work.
Tumor markers were in the normal range pre-surgery.
AFP is now at 8.1ng/ml… (I don’t have the number written down, but I remember it being around 4 pre-surgery… so it’s on the rise).
bHCG is in the normal range at “<1”

CT Scan write up lists everything as normal except for this:
“there does appear to be a low-attenuation aortocaval node anteriorly on image #54 and #55 measuring approximately 1.2cm in short axis dimension. In addition, there is a left sided periaortic node measuring 1 cm in diameter.

Impression: Minimal aortocaval adenopathy. This is below the level of the renal hilum.”


I have met with my oncologist once, and based on this information he is recommending chemotherapy (I think it would be BEP). I have since had a brain MRI scan (today) and will be meeting with my oncologist later in this week. I guess I will know for sure what will be happening then, and I obviously have more questions for him then.



I hope everything can go well. I am 21, and into bodybuilding. Everything involved with that is going extremely well for me. It seems like it is even better now post-orchietomy. I know this will be messed up if we do go through with chemo though. Otherwise I am really hoping to avoid the RPLND.



Anyways, that’s my story. It has helped reading through this website for info and I finally decided to register and make a post and see if anyone had feedback.

[italian_tc]

hi David, I'm Davide and I had my left i/o on 1/9/07, embryo with invasion...I'm waiting for rplnd...
I spoke a lot with different people who did chemo or rplnd and everyone fell really good now...
good luck for everything
davide

[dadmo]

Welcome to our forum. Follow this link to a series of question you can ask your doctor. With your markers on the rise and a swollen node it seems that chemo is in your future. It will be tough but not as tough as it used to be. Keep us posted and we may be able to help you through the process.

[Scott]

Welcome, David. Chemotherapy definitely sounds like the right direction. Keep us posted on how things are going.

[Margaret]

Hi there and welcome. Based on your numbers I would say chemo is the right fit for your needs right now. I would also say that if all goes well you may be able to avoid the RPLND. Of course I am no doctor. But you sound like you feel good about moving forward and I know you will do great!!!

Keep us posted on how you are feeling.

[Savin16]

Hi David,
I'm sorry for what your going through right now. You will get all sorts of help and information from this forum. Keep us posted.

[petep]

It's always odd welcoming someone here...but welcome david...

You can click my user name & read my posts...similar case to yours...I was 95% embryonal...and did 3xBEP.

First, you will be fine....I've posted this before, but looking back at this...I ended my chemo on april 17, 2006...I can not believe it has been almost one year. I spent my weeks in the hospital for chemo...on a floor with all chemo patients....what I witnessed was generally if you were not a heavy smoker and/or drinker of hard alcohol, your body could keep up pretty well. The nursing staff reinforced this.

Stay on these forums...post any and all questions...I promise you will get lots of responses....many tips for dealing with chemo too...

If you want, feel free to pm me...if you want to call or email me with anything, feel free.

pete

[curt]

Rplnd

I had an RPLND on 13 February. The oncologist wanted to give me 2 rounds of BEP and the urologist wanted me to undergo an RPLND. Well they got together and the urologist won. I'm minus 28 lymph nodes and am doing great. There isn't any long-term effects to the RPLND and the possible long-term effects and complications to chemo for me wasn't worth the risk. In my case they didn't find any cancerous lymph nodes so I dodged the chemo bullet. I have less than a 10% chance of recurrence and don't need chemo. I'll be on surveillance for the next 6+ years but at least I don't have to worry about leukemia, lung scarring and all the other stuff. It's been less than 3 weeks and I'm walking over 5 miles a day on the treadmill and feel good. The doc said in 6 weeks I should be able to start my workout routine again. The recovery time for the RPLND compared to chemo seem pretty different. I hope to have another 50 years in me - who knows what other, if any, long-term effects they may find in the future about chemo. When faced with the decision of chemo I read some studies indicating whether 2 rounds was enough or two too many. The only way to verify staging is through an RPLND. Just wanted to share some thoughts - don't throw RPLND out the window.

[David07]

Thanks for all of the replies. I appreciate all of them, even if I don’t specifically respond to yours. Reading through this does seem kind of weird. The responses are much different than what you would get on other forums. I will keep posting what is going on. The detailed logs of everything people have gone through has helped me, so I think I might write the same. I like knowing everything… which cant always happen.

I will be seeing the oncologist either tomorrow of the next day, and I am assuming that I will see a “chemo video”, see where treatment takes place, and maybe set a date for things.



Petep: Thanks, I might have a question for you later. Otherwise, I don’t smoke, and have minimal amounts of alcohol. If I go through with all of this, hopefully my experience will convince my younger brother to quit smoking 


I did ask my oncologist about BEP vs EP when I met with him. He basically said that the chance of lung problems with BEP was quite low, and that they can change the medication if needed. I will look at it more though and ask more questions.



Otherwise I have only told my parents and a couple close friends about this so far. I am having a hard time deciding if I should keep it like that, or if I should share this experience with everyone. Otherwise I would need to find a good middle line.

[Margaret]

One good thing that may help you to keep track of things is the Lance Armstrong 'Livestrong' record keeping book. I will post a link here for it.

It is an AMAZING book and it is FREE through the web site for people with Cancer. You will not beleive how huge and comprehensive it is and it has places in it where you can keep track of everything.

As far as the Bleo goes, my husband had 4 rounds of it and did not have any long term lung effects. Our Dr. says going with out the Bleo for a very slight risk of damage is not worth it. That Bleo works and should be used as a treatment course. So I think you will be okay with it. My husband's worst side effects were not the lungs, it was the fever that came along with the Bleo.

Here is the link to the book. http://www.store-laf.org/nt001.html

Good luck and we are all pulling for you

[mstlyn]

One good thing that may help you to keep track of things is the Lance Armstrong 'Livestrong' record keeping book. I will post a link here for it.

It is an AMAZING book and it is FREE through the web site for people with Cancer. You will not beleive how huge and comprehensive it is and it has places in it where you can keep track of everything.

As far as the Bleo goes, my husband had 4 rounds of it and did not have any long term lung effects. Our Dr. says going with out the Bleo for a very slight risk of damage is not worth it. That Bleo works and should be used as a treatment course. So I think you will be okay with it. My husband's worst side effects were not the lungs, it was the fever that came along with the Bleo.

Here is the link to the book. http://www.store-laf.org/nt001.html

Good luck and we are all pulling for you

Well thats nice to know now that I have been told repeatedly on this forum that 4xEP is exactly the same as 3xBEP. We opted to go without the bleo and my son is halfway through his treatment now.
Did your doctor say why its not worth it to go without the bleo?
I keep finding out different things when its too late to turn back, and do things "the right way".
What I get from your post is that the treatment WITH bleo is more effective, than it is without.

[Margaret]

Our Doctor feels that Bleo, added to the standard chemo for TC, is a proven route. That being said, I know that Lance Armstrong did not want to have bleo because of possible lung damage and he is doing well from all accounts.

Our Doctor was very agressive and gave my husband 'the works' because, like everyone else, we wanted the best possible outcome. I am sure that if your doctor feels that your son does not need the bleo, then he knows what is best. Our doctor uses it almost 100% of the time in TC cases.

My husband had 2 lymph nodes that had cancer and one measured almost 10cm. Since it was so large, they told him they wanted him to have 4 rounds instead of 3. He completed the 4 rounds and his tumor markers were at 3.4 (AFP) and .5 (HCG). We still went ahead with the RPLND because we wanted a complete cure with little chance of it coming back. (my husband needed the piece of mind too) After the bi-lateral RPLND, they discovered no cancer and his AFP (last week check-up) was 2.0 and his HCG was >.2. So for us, we got the cure (or at least hope that the numbers will never rise again) we were hoping for. Would we have gotten these results with out the Bleo? I guess no one can say for sure since he did have it. I know that I have heard of many people being cured with no Bleo. Only your dr. can know for sure. But I am sure that your son is in good hands. I am a mother to a 7 year old son and if I were in your shoes, I would be asking all the questions I could too. I will say prayers for your family and your son. If your son would like to speak with my husband, he is more than welcome to. I will give you our number if you would like. In the meantime I will look for some medical advice regarding the use of bleo to see if it will help you.

Hugs,

Margaret

[Margaret]

This is what I was able to find for you:

"As an adjuvant treatment, use of chemotherapy as an alternative to radiation therapy is increasing, because radiation therapy appears to have more significant long-term side effects (for example, internal scarring, increased risks of secondary malignancies, etc.). Two doses of carboplatin, typically delivered three weeks apart, is proving to be a successful adjuvant treatment, with recurrence rates in the same ranges as those of radiotherapy.

Chemotherapy is the standard treatment, with or without radiation, when the cancer has spread to other parts of the body (that is, stage II or III). The standard chemotherapy protocol is three to four rounds of Bleomycin-Etoposide-Cisplatin (BEP). This treatment was developed by Dr. Lawrence Einhorn at Indiana University. An alternative, equally effective treatment involves the use of four cycles of Etoposide-Cisplatin (EP).

While treatment success depends on the stage, the average survival rate after five years is around 95%, and stage I cancers cases (if monitored properly) have essentially a 100% survival rate (which is why prompt action, when testicular cancer is a possibility, is extremely important"

(It sounds like from reading this that if you don't have the Belo, then you should have 4 rounds of EP instead of 3 rounds for the same effect)

Different site but same advice. Either do 3 rounds of EP with Belo, or 4 rounds Ep with out Belo.

"Most types of chemotherapy kill cancer cells directly. Other drugs act by making the cells more vulnerable to radiation. Often the use of 2 or more drugs is more effective than any single drug. The main drugs used to treat testicular cancer are cisplatin, vinblastine, bleomycin, cyclophosphamide, etoposide, and ifosfamide. These drugs are used in various combinations. The most commonly used chemotherapy regimens are cisplatin, etoposide, and bleomycin for 3 cycles, or cisplatin and etoposide for 4 cycles. High-risk cancers may receive 4 cycles of cisplatin, etoposide and bleomycin, although many doctors believe that more intensive regimens should be used for patients with high risk disease. In general, it is probably safest to seek a second opinion from a major center with experience in managing high risk disease before embarking on a treatment program"

Last one I was able to find:

"The chemotherapy protocols used for testicular cancer vary from country to country and even from hospital to hospital. That makes life a little more complicated, but in general, there are two accepted chemotherapy protocols for good risk testicular cancer: Either 3 cycles of BEP (Bleomycin, Etoposide, and Cisplatin) or 4 cycles of EP (Etoposide and Cisplatin). The standard protocols used in the US call for the cisplatin and etoposide to be given, inpatient or outpatient, over a period of 5 days. Some other countries and some experimenters in the US have tried to give the chemo over a period of 1-3 days, but in my opinion, they are really trying to save money more than they are trying to benefit the patient. "

Given all three of these, ad the fact that it is Dr. Lawrence Einhorn at Indiana University making the case (I think he is one of the best in the world)...I would say that speaking to your doctor about doing a 4th round if you are NOT getting the Bleo, may be wise. Or if you want a second opinion have your Dr. call Dr. Einhorn and maybe he can give you advice. But I think you are wise to 'get it right the first time' since no one wants to play around with this any longer than they have to. The only bad part is that would mean your son would have to endure a 4th round. But for a cure, I know it is worth it.

Let me know if this is helpful. I am hoping for the best for you!!!

Margaret

[mstlyn]

Our Doctor feels that Bleo, added to the standard chemo for TC, is a proven route. That being said, I know that Lance Armstrong did not want to have bleo because of possible lung damage and he is doing well from all accounts.

Our Doctor was very agressive and gave my husband 'the works' because, like everyone else, we wanted the best possible outcome. I am sure that if your doctor feels that your son does not need the bleo, then he knows what is best. Our doctor uses it almost 100% of the time in TC cases.

My husband had 2 lymph nodes that had cancer and one measured almost 10cm. Since it was so large, they told him they wanted him to have 4 rounds instead of 3. He completed the 4 rounds and his tumor markers were at 3.4 (AFP) and .5 (HCG). We still went ahead with the RPLND because we wanted a complete cure with little chance of it coming back. (my husband needed the piece of mind too) After the bi-lateral RPLND, they discovered no cancer and his AFP (last week check-up) was 2.0 and his HCG was >.2. So for us, we got the cure (or at least hope that the numbers will never rise again) we were hoping for. Would we have gotten these results with out the Bleo? I guess no one can say for sure since he did have it. I know that I have heard of many people being cured with no Bleo. Only your dr. can know for sure. But I am sure that your son is in good hands. I am a mother to a 7 year old son and if I were in your shoes, I would be asking all the questions I could too. I will say prayers for your family and your son. If your son would like to speak with my husband, he is more than welcome to. I will give you our number if you would like. In the meantime I will look for some medical advice regarding the use of bleo to see if it will help you.

Hugs,

Margaret

Well to be honest with you since I have found out so much about doctors that are inexperienced dealing with TC, I don't have a lot of faith in the doctor "knowing what is best" for my son.

My sons cancer has already spread because of his primary doctor, and I think his urologist as well. Between these two doctors there is about 6 weeks of time that nothing was done when things should have been.

My sons oncologist was initially going to use 3xBEP for my son, when I asked him (after reading info on this forum about it) if he could be treated without the bleo and achieve the same cure. He told me YES, as have many people on this forum.

Your post is the first one I have seen where anyone specifically said that treatment with bleo is the better treatment.

And I agree with you about having RPLND or whatever it takes to be sure that cancer won't come back. I read some people on here saying the same thing, but then they tell me that my son might not need it, and to just wait and see.

I too want every measure taken to give my son the best chance for a complete cure.

I wish someone would have told me that the bleo is a better treatment, before my son started his chemo.

I think its best that I just contact an expert, and stop listening to everyone else before I lose my son. Too much time has already been wasted. I wish I had just let my sons oncologist go with the bleo when he brought it up, and kept my mouth shut.

But he failed to tell me that bleo is a better treatment too.

Thank you for the information Margaret, I appreciate knowing the truth. I just wish I had the truth before hand. Thank you for your prayers too. I pray that all of you will be cured and live long happy lives.

I have to leave this forum..

God bless all of you

Tammy

[dt22207]

Well thats nice to know now that I have been told repeatedly on this forum that 4xEP is exactly the same as 3xBEP. We opted to go without the bleo and my son is halfway through his treatment now.
Did your doctor say why its not worth it to go without the bleo?
I keep finding out different things when its too late to turn back, and do things "the right way".
What I get from your post is that the treatment WITH bleo is more effective, than it is without.

One document that was shared with me here that I'd recommend checking out is the NCCN Clinical Practice Guidelines for testicular cancer. I showed it to my doctor and he concurred that it is the bible when it comes to choosing treatment protocols.

If you download it from this link, you can follow the recommendations for your son's particular type and stage of cancer and see if the doctors have varied from the recommended protocol(s).

http://www.nccn.org/professionals/ph...testicular.pdf