100% Embryonal Carcinoma - diagnosis and treatment plan

**julesTO** · 10-21-10, 11:32 PM

Hi andy,

Sorry to have to welcome you to the forum, but I'm with your oncologist - you will be cured. EC is extremely sensitive to chemo so this is good!

As for the amount of time it will take for your chemo drips, this can vary depending on any given hospital's approach and/or how your body responds to the chemo. For example, at the beginning of his 2nd cycle Shaun had a mild allergic reaction to Bleo (which sometimes happens - no worries, the nurses are quick to react). Because of this they slowed down the drip so his body wouldn't react, and administered Bendryl along with his chemo. This turned his 2 hour sessions into 3 hour sessions for cycles 2, 3 and 4. If you're interested, the blog in my signature chronicals all 4 of his BEP cycles -- check out the archives from March to May.

The only thing that surprised me in your post was the plan to definitely receive a shot of Neulasta after each 'week on'. Certainly if your white counts drop too low (which they will monitor throughout the process) this is a common treatment, but I thought the shot was only given if/when needed. I understand it can cause a kind of bone pain so I don't know that it's something you want unless you really need. Hopefully someone else can clarify this for both of us, but this is my understanding.

Just a couple of additional tips: try to drink at least 2-3 litres of water every day. Also, Shaun took 3 Zantac/day throughout his treatment - he was told it would keep his stomach coated and reduce nausea and he really only needed the heavy duty anti-nausea drugs a couple of times so we figure it must have helped.

Best of luck - you'll be through it and back to restored health before you know it

**andy84** · 10-22-10, 09:45 AM

Hi jules,

Thank you for responding. I have indeed read your blog and it will be among my favourite reading materials over the next 9 weeks. You've done a fantastic job chronicling Shaun's treatment. I am amazed by his (and your) demeanour throughout. My wife and I are going into this with the same mindset and hope to come out all the better on the other side.

I will heed your concerns regarding the Neulasta and hope that others will chime in on the subject.

It sounds like you had a very positive experience with complimentary naturopathic care. I have a follow-up meeting with a naturpathic oncologist today to discuss possible options. I plan to take along the list of items that Shaun used to deal with the various side effects of chemo.

Thanks again...you've created a valuable resource through your blog that, after reading, makes all this seem a lot more doable!

Andy

PS - I am glad to read that Shaun continues to do well. I wish you both the best.

**Fed** · 10-22-10, 10:14 AM

Thanks for sharing your story. Indeed your case sounds very "textbook", and chemotherapy for good risk disease is the way to go here. You will beat this without a problem!

**julesTO** · 10-27-10, 11:57 PM

Hi Andy,

Just wondered how things are going so far.

Shaun and I were thrilled to hear the blog is helping you! Aside from keeping family and friends posted, we really hoped it would become a resource for others so thanks for letting us know, and for your well wishes.

You're right, we did have a very positive experience with our naturopath - primarily because she was very knowledgeable about suggesting things that (a) would not interfere with the chemo, and (b) would not upset our oncologists. She wanted Shaun to feel he had a cooperative health team working in his best interests and didn't want to create any tension. We ran everything by our oncologist and although he wasn't a believer, he didn't see any conflict.

I'll send you a private message with a more detailed list of the naturopathic "stuff" Shaun used and you can see how it compares to what you found out on the 22nd. There's more than what I posted on the blog - I didn't want to bore anyone too much

BTW, I noticed you're in Ottawa! If you and/or your wife would ever like to talk - whether by email, phone or in person - we'd be happy to get together. The beginning is the scariest part of the journey and we can completely relate, so anything we can do to help - just say the word.

Hope week 1 has been manageable so far. All the best to you and your wife,

J

**Wesmom** · 10-28-10, 12:43 PM

Wesmom

Hope all is going well. I just wanted to let you know my son (21 yrs old) went through the exact same cycle as you. 5 days (Bleo on Mondays) EP the rest of the week with Bleo the following 2 Mondays. Then it was repeated 2 more times. My son's blood counts always dropped by the time he went in for the 3rd Bleo treatment of each cycle. His Oncologist never gave him a boost shot. My son ended up in the Hospital when it was time for his last Bleo. The Dr. at the Hospital wouldn't give him a boost that time either. He said he was afraid it would cause bleeding in the lungs (I'm not sure if that was a theory or fact). My son found out he had Mono after being discharged from the Hospital. I really believe that is one of the things that put him in the Hospital but the Doctor's overlooked it. Good luck with your treatments.

**vicfirth** · 10-28-10, 04:43 PM

Good luck Andy and keep us informed. I may be going to same route as you. I think I'll find out on Tuesday.

**tjbrady** · 10-28-10, 09:18 PM

My son did the 3XBEP and the EC was blasted to non existence. The Teratoma he had is another story in and of itself. You'll have this whooped in no time and be getting back on with life!!

**andy84** · 10-29-10, 11:20 AM

Hello All,

4 days in the books and one more to go on my first "big week". It has been going very well so far. I have waves of nausea but the meds help to keep things down. I am drinking 2-3 litres of water every day, including mineral water, which is bubbly but not as sweet as ginger ale. I am also eating pretty well. Food like eggs & toast, tuna, brothy soups all seem to go down well. Ginger tea, ginger snaps and crackers have helped keep the nausea under control when it gets bad. I sleep when my body tells me to and I have been able to fit in some exercise and play time with my kids. My wife and family have been unbelievable supportive and caring throughout.

The pre-treatment anxiety was certainly worse than the treatment itself to this point. I started on Monday with blood work, having a PICC line inserted (I highly recommend) and my first round of treatment with all three drugs – BEP. Since then, things have been pretty manageable. The cancer clinic and chemo treatment area here in Ottawa are wonderful. The staff is great and they go out of their way to make things comfortable.

I am looking forward to the weekend and couple of days of rest before my Bleo push on Monday. I hope the Bleo-only weeks provide some time to recuperate. On Saturday, a home nurse will come to give me a shot of Neulasta, and then every Tuesday to maintain the PICC line.

Just a quick update to say that things are well...I will keep the forum updated as my treatment progresses. A few quick responses to those who have posted a reply:

Fed: thank you for the words of encouragement...you can never hear them enough. I re-read your message often.

Jules: thank you for your support, advice and all of the naturpathic information. I continue to learn a lot from your blog and I am inspired by the way you have both approached Shaun’s treatment. My wife and I would love to keep in communication with you and Shaun and hope that someday we may indeed meet in person. I received your private message and will respond shortly.

Wesmon: sorry your son had to deal with mono on top of everything else. My doctor was quite insistent that Neulasta following the “big weeks” is the way to go. All of the nurses were in complete agreement and mentioned that they have not run into any problems with it. Hopefully it prevents an infection. I have a son in jr. kindergarten, so infections are always a possibility in this house.

Vicfirth: I have been following your threads and I hope that you won’t need to go down this road. Please be assured that it is doable and that you will get through it and be on your way to a cure. Please feel free to drop me a line anytime, if I can give you any advice or share more details about my experience. I wish you all the best!

Tjbrady: I really appreciate your reply and words of encouragement. I have read the posts about your son and wish to pass along my deepest sympathies. You are a tremendous father and your continued participation on this forum is invaluable.

**andy84** · 11-14-10, 08:35 PM

Update

Well today is the last day of cycle 1 and I am feeling more or less myself. Overall, the first cycle went well. I had some nausea at the end of the big week and was a little bit dehydrated. However, the Bleo-only weeks were pretty good and my appetite went through the roof. My hair is essentially gone and I have shaved my head again to help deal with the stragglers. My kids are enjoying the new look. Hopefully the relatively warm weather we are having here holds out for a while longer. Cycle 2 starts tomorrow and I am feeling ready to go.

This past Tuesday I met with my oncologist. It turns out that the likely source of the elevated blood markers is a small lesion on my left lung. The lesion wasn’t present in the x-ray taken on Aug. 27 before my initial surgery, however, they found it in the x-ray they took Oct. 25 when my PICC line was put in. It was small enough that they weren’t entirely sure what it was. I had another chest x-ray taken Nov. 1 and the spot has shrunk. My oncologist indicated that it is likely evidence of metastasis, which was indicated by the elevated markers (it was occurring somewhere), and by the fact that the spot has shrunk (in response to the chemo). She said all of that is positive. I asked her if this changes anything, to which she said that we’re still talking cure and the course of treatment remains the same – 3xBEP. Looking at the NCCN guidelines seems to confirm that this is the case.

I had blood work done on Friday, which included the markers. I will find out sometime this week where they stand. I am not sure how quickly to expect to see a response in the markers. They were only slightly elevated when my treatment began.

That is it for now. I will post another update as cycle 2 goes along. In the meantime, I wanted to say thanks again for the support and guidance I have received from this forum.

All the best...Andy

**Aegean** · 11-14-10, 09:55 PM

Great to hear that everything is going well. Make sure you stay well hydrated and take the meds. Although no personal experience, for some people the cycles build on themselves in terms of toughness, hopefully you'll sail through!!

**andy84** · 11-30-10, 08:35 PM

Well cycle two is done – cycle three starts this coming Monday. Cycle two went reasonably well. I had my share of nausea during the big week, but so far the Bleo-only weeks have been better. I think that I managed my hydration better and that helped a lot during the big week. For now it seems that fatigue is the biggest problem, which I suppose is normal as the cycles continue.

I had my end of cycle oncology appointment today to review how things are going and get set for cycle three. I had another chest x-ray before the appointment. The oncologist reviewed the images against the x-ray taken on Oct. 25. Based on her quick review at normal resolution she said that where the spot on my lung was clearly visible on the Oct. 25 image it seems to be gone now. So the chemo appears to be doing its job.

As for my blood work, on Oct. 25 my pre-chemo markers were AFP – 19.8; HCG – 18; LDH – 188. Blood work taken on Nov. 12 at the end of cycle one showed AFP – 12.5 (<9 is normal); HCG – 1; LDH 180. She indicated that it is possible for the AFP number to “hang” just above normal for a period prior to falling to within the normal range. I am scheduled to repeat my blood work this Friday in advance of cycle 3. Unfortunately, that means I won’t have an updated AFP number until the following Friday. I got the sense that the AFP number is a bit concerning and not entirely behaving as expected.

I was wondering if anyone can comment on similar experience and/or whether it is in fact not completely unusual that the AFP number would “hang” like this.

Otherwise, I am anxious to get on with cycle 3 and have my last big week behind me. Thanks again for the support!

Andy

**Mathias149** · 12-17-10, 11:42 PM

the dreaded afp fluctuations

My cancer was 100% EC as well and I watched the AFP with a hawk like interest. Mine started at 19.2 (15 normal for however they measure mine)
then orchiectomy
then dropped to 4
then 2.5
then 2.8
then 3.8
then 4.9
then 18.1
then chemo
then 6
then 8.8 <~~~~this rise during chemo freaked me out, but turned out to be nothing, probably a similar effect to whats happening with you.
then 3.6
then 1.9
then 2.2<~~~~now this damn TEENY rise has me all anxious about the next test.

Its like watching the stock market, I feel like a nervous investor and I want to sell this position!!!

Good luck with your treatment man

**julesTO** · 12-17-10, 11:47 PM

Hi Andy,

How are you feeling? Isn't next week your last Bleo push?

Hope all is as well as can be,

J

**andy84** · 12-22-10, 09:44 AM

3xBEP is DONE! Monday was indeed my last Bleo-only treatment. The cycle 3 “big week” was probably the best of the 3 – in part because I managed things better and I suspect knowing it was the last “big week” helped too. With that said, it will definitely take some time to bounce back. I generally feel ok and my appetite is good, but I feel worn out a lot of the time and it is hard to do anything for a sustained period. Things are improving every day.

At this point, all of the information I have is as of the end of cycle 2. The radiologist’s report on the Nov. 30th chest x-ray confirms that the spot on my left lung is no longer visible via x-ray. I suspect that the 3rd cycle will have cleaned up anything that might have been left behind.

Blood work is a little less reassuring, though my oncologist tells me that she is not worried and that things are working. Here is a recap of my blood work to-date:
Pre-chemo – 10/25/2010 – AFP – 19.8; HCG – 18; LDH – 188
Post-cycle 1 – 11/12/2010 – AFP – 12.5; HCG – 1; LDH – 180
Post-cycle2 – 12/03/2010 – AFP – 10.5; HCG – 2; LDH – 293
Normal Ranges – AFP <9; HCG <5; LDH 100-200

The obvious questions running through my head are: why isn’t the AFP normal, why is the HCG up a tick, what does the LDH rise signify??? My oncologist said that we need to see the blood work post-cycle 3 and that none of the post-cycle 2 results have her concerned. Needless to say I would be sleeping better if everything was comfortably in the normal range.

Mathias: I am like you – a blood work hawk! It’s hard to wait for the next update, but I suppose that it comes with the territory!

On Jan. 10th I will have a complete CT scan of my chest, abdomen and pelvis. I will also have my blood work re-done to see where everything stands post-chemo. In the meantime, I will focus on recuperating, spending time with my family and enjoying the holiday season!

Any thoughts anyone can share on my situation would be very much appreciated.

I want to wish everyone a very merry and restful holiday season and a happy and healthy New Year!

Andy

100% Embryonal Carcinoma - diagnosis and treatment plan

100% Embryonal Carcinoma - diagnosis and treatment plan

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