Left orchiectomy, 5 x RPLND , 15 x chemo , 22 x radiation and what now ?? :)

[krzysiek]

Hi.
My name is Christopher and i'm 26 years old. Here is my story :


1) 02.2002 - orchiectomy - left testicle (before surgery : AFP - 86,5 BHCG - 223,9)
Diagnosed spreads to the lymph nodes and left lung

2) 02.2002 to 06.2002 6 x BEP - helped to left lung ( markers fine )

3) 08.2002 RPLND tumor removed but not in 100% because it was around aorta

4) 09.2002 to 11.2002 3 x BEP (markers fine)

5) 12.2002 - healthy for almost year

6) 01.2004 - high markers - 2 x VIP and markers fine

7) 03.2004 - healthy for almost 3 years

8) 09.2006 - AFP 282 - 1 x VeIP didn't worked , 1 x BEP , didn't worked , Whole body scanned ( head , chest , etc) tumor in old place -lymph nodes near aorta.

9) 12.2006 RPLND not successful AFP 900

10) 1.2007 Radioteraphy( x22 ) to make tumor easyier to cut - AFP down to 160

11) 05.2007 RPLND successful but AFP grow to 2800

12) 07.2007 to 11.2007 Chemotherapy - TAXOL + GEMZAR( 4 or 5 times ) - AFP down to 1500 and starts to grow again ( to over 3200 )

13) 02.2008 RPLND successful ( tumor in lymph nodes cut with part of aorta ) but AFP not went down

14) 02.2008 - 8.2008 AFP stil around 300 . 8.2008 PET scan - spreads to the lymph nodes near hip ( this is my best way to describe it :)

15) 09.2008 RPLND ( fifth time ) and after it AFP went down from 3400 to 200 in just 4 weeks.

16) 10.2008 - informations from doctor
- it is nesesery to have chemotherapy because ,eaven that tumor is cut it will grow again
- my body is not responding to standard chemotherapy for TC
- maybe TAXOL + GEMZAR will help ( because it is over a year since i tryed it )
- if not - he don't know what to do .



So , 6 surgerys , 15 courses of chemotherapy , 22 of radioteraphy and stil sick.
I'm from Poland and this is all kind of treatment that i can get here.( My doctor told me that standar chemotherapy works in almost 99% so there are no so much reason to

develope something new )
Now , if You know any other way that i can try please let me know - that includes maybe different kind of chemotherapy ,maybe a place where new chemotherapy is developed and

where are looking for people to test it, hospital where they are working with cases like me, etc.
I will be thankful for any advice .


Chris
ps:sorry for any mistakes :)) i described my history as best as i can.

[Scott]

Wow, Christopher, I can't believe everything you've been through in the last seven years.

Your case definitely calls for an expert (http://tcrc.acor.org/experts.html) in testicular cancer. The TCRC's president, Doug, asked if you could travel to Germany or Denmark, where there are many experts.

High dose chemotherapy with stem cell transplant or clinical trials may be options for you.

[krzysiek]

Hi
Thank You for Your answer Scott. I understand that it is hard to figure anything for me.

I have a few questions:
1) You wrote about Germany and Denmark - is it becouse it is close to poland or becouse there are best experts ?
How about UK ? I''m asking becouse it will be much easier for me to travel , communicate etc in UK. I have sister living in London , so i have place to stay. and I've spend almost a year in london in 2005/6.
2) i never have to go to doctor in uk so how does it look ? i mean insurance ? Is standard insurance ( example if you are working as employee) cover this type of treatment ?
3) if You need to have special insurance is it expensive ?

Thanks.
Krzysiek

[ukboyuk]

Hey Krzysiek,

I would say you need to get Dr. Einhorn, leading TC specialist in the world, in on this.

I am not sure of the best way to get his advice, I think someone on here can help with the best way to contact him.

As for UK, there are special conditions to qualify for health care - see the link below. I am not sure of the situation with a pre-existing condition but I think that it does not matter. The British national health service is not like private insurers who may argue with you. It helps that you are an EU citizen but I still think that you need to be living here and cannot have treatment whilst on "vacation". Maybe you could actually move here and stay with your sister and look for work later but get treatment immediately because you say that you are staying here as a resident and not simply on vacation. Surely they won't make you wait 3 months until treatment. Otherwise, how do people move freely around the EU if they cannot resume healthcare?

Myself, I am being treated at Royal Marsden who have the best TC doctors in the UK. I understand Barts is also good and others that I am not so familiar with. Frankly, I don't think there is such a thing as bad treatment here as the UK has a strong history in specialist medicine. I would suggest getting your sister to make a few phone calls and enquiries for you to learn about what you could be eligible for here in the UK.

This may also help:

http://www.adviceguide.org.uk/index/family_parent/health/nhs_charges_for_people_from_abroad.htm

Also, maybe you can ask on some Polish forums about healthcare situation in UK with existing condition. There are one million Poles here so some of them must have gone through a similar situation with a different existing condition or other cancer before.

[dadmo]

K:
If you can get to New York City they have a Hospital (Sloan Kettering) that is a world leader in the treatment of testicular cancer.

[Scott]

1) You wrote about Germany and Denmark - is it becouse it is close to poland or becouse there are best experts ?
How about UK ?I suspect Doug's suggestion was because there are experts there who are relatively close to you. There certainly are experts in the UK and the US as well.

[Already Bald]

Hi Krzysiek,
Wow, you have been through hell and back. I wonder if your surgeon is the same person that has adminstrated your chemo?
Anyway, it is time for a second opinion at a center of excellence.
With your sister living in the UK, I hope you are able to get treatment there.
Best to you.
Joe

[jmac]

after every thing you have been through I would suggest contacting Dr. Einhorns office for some consultation...

[Scott]

after every thing you have been through I would suggest contacting Dr. Einhorns office for some consultation...See this link (http://medicine.iupui.edu/HEMO/Faculty/viewHEMOFaculty.asp?facID=2697) for contact details.

[Smartie]

As a citizen of an EU state, you should have no problem accessing NHS care in Britain.

See, for example, this site from the University of Oxford (http://www.admin.ox.ac.uk/uohs/services/visitors.shtml#_Toc49057707), which states that "Foreign nations from EU member states have reciprocal arrangements for both dental and medical health care so can access the full range of NHS services." Also see this BBC report which states that European law dictates that EU citizens are equally entitled to NHS services (http://news.bbc.co.uk/2/hi/uk_news/england/7492411.stm)

The site that Chris (ukboyuk) directed you to seems to be an excellent source of information, it states: "You have the right to free NHS hospital treatment if:-
* you are a national of an European Economic Area (EEA) country."

[dadmo]

Krzysiek:
If you think you might travel to the US you might want to contact both IU and Sloan Kettering and visit who ever can see you first.

[krzysiek]

Hi.
Thanks for all answer and help.News:
1) Einhorn - i have answer from him that :Giving the same chemotherapy would not be beneficial. Options would be daily oral etoposide or single agent oxaliplatin.
2) Prof Alan Horwich - add carboplatin to tax + gem or wait until tumor will grow and cut it .

I had 3 CT scans last week :abdominal , chest and pelvis. All fine , nothing disturbing.

Also , i founded this.
http://clinicaltrials.gov/ct2/show/NCT00772694?term=testicle+cancer&rank=14 .
Clinical trail that is running in poland. Today i recived answer from them, they will look at my history and contact me.

If that will not work i thinking about going to UK .
Traveling to USA is not so easy becouse as a polish citizen i need visa to get there , and it take some time to get it.

So , i will let know about that clinical trail , and what i'm going to do next.

AlreadyBald : "I wonder if your surgeon is the same person that has adminstrated your chemo?" - no my surgeon is head of hospital department one of the best oncology hospital in poland. Person that has adminstrate my chemo is other doctor.

Thanks.
Krzysiek

[Already Bald]

K,
I'm hoping and wishing the best for you.
Is it possible to have Dr. Einhorn contact your doctor in Poland, or maybe a new doc in the UK?
He has done so much with so little for others, it is good you were able reach him.
Godspeed to you.
Joe

[EvAngelos]

Christopher, you really touched my heart with your story. I will start praying for you and I believe that if God will not do a miracle overnight, that he will lead you trough good advices and specialists and will soon heal you and win this 7 years long batle for you.

[krzysiek]

Hi
For last 4 week i was on clinical trial with Sorafenib ( NEXAVAR ) .

http://clinicaltrials.gov/ct2/show/NCT00772694?term=testicle+cancer&rank=14

4 pills per day.
Side effect : just one but biiiiiggggg .
I don;t know the word but this round things that You get under Your feet when You have a really really long walk .
So painfull that on second week i had to reduce amount of pills to 2 per day ( for 8 days )

Most important news - AFP went down from 1300 to 300 .

Thanks.
Krzysiek

[EvAngelos]

Christopher, Im so happy and thankfull to the Lord that ur AFP went down. It really encourages!! Keep bold and strong and give the body everything that the doctors recomend you. The money should not be problem for you. Don't shy to ask ur relatives, ur friends (ask some friend to ask everybody else), ask some church there, use the media to raise support etc.
And dont forget to keep us update with everything that's going on with you. As I see your post I remind myself to pray for you!