Different treatment in Germany

[Dagmar]

Hi

I am wondering if anyone has been to Germany for alternativ treatment or chemo treatments?

[TinaFish]

My idiot sister suggested that I MOVE to Germany because I have German citizenship. 1) my passport is expired. 2) I speak the language, but there's a difference between "Guten Tag" and figuring out how to rent an apartment, figuring out their public transportation system, and, oh yeah - leaving my small children in the US with WHOM (not my sister) to take care of them? Oh yeah, I'd probably have to pay for my apartment and food in Germany too! The business that I own can't fund that if I'm not around to run the business. Tangible goods. Literally tons worth. I can't bring it all to Germany AND THEN figure out how to use their version of stamps.com.., assuming there is one!

My sister's rationale was that the healthcare system in Germany was somehow better than here in the U.S. I don't even know if that's true. Supposedly it's very good.

[stu]

We used to have a member here who spent a fortune , and I mean a fortune on German clinics . He did do some chemo in the mix as well if I remember right so it would be hard to separate which was making the impact .
However what he did or did not gain physically he seemed to gain something from the process . He also seemed to have a lot of available cash at the beginning but soon motored through it . I got the impression if you kept paying they kept giving .
He was quite a character and I ended up following his journey . Sometimes willing him on sometimes quietly sad that his money was evaporating.
Who I am I to judge though . He kept an extensive blog . Petelostatsea . Might be worth reading it before you embark as he was honest about the cost .
Pete won some battles along the way but died peacefully with his family .
Take care ,
Stu

[Rikimaroo]

Germany has one of the TOP radiation centers in the world with new carbon technology. It's better then US radiation treatments and less damage from it. US is the slowest from all the other countries when it comes to cancer treatments and advancements.

https://www.heidelberg-university-hospi ... n-therapy/

Rikimaroo

[TinaFish]

Germany has one of the TOP radiation centers in the world with new carbon technology. It's better then US radiation treatments and less damage from it. US is the slowest from all the other countries when it comes to cancer treatments and advancements.

https://www.heidelberg-university-hospi ... n-therapy/

Rikimaroo

That's horrible. Really, I just illustrated how impossible it would be for me to move to Germany for treatment, and it seems criminal that the U.S. wouldn't offer the technology that other countries offer.

[MetastaticEquilibria]

Germany has one of the TOP radiation centers in the world with new carbon technology. It's better then US radiation treatments and less damage from it. US is the slowest from all the other countries when it comes to cancer treatments and advancements.

https://www.heidelberg-university-hospi ... n-therapy/

Rikimaroo

That's horrible. Really, I just illustrated how impossible it would be for me to move to Germany for treatment, and it seems criminal that the U.S. wouldn't offer the technology that other countries offer.

Actually, the US is catching up in the number of proton and heavy ion beam therapy facilities. I think Japan currently has the largest number of proton and heavy ion facilities of any country in the world, but the US has been on a building spree the past few years and is rapidly catching up in absolute numbers, though still behind in per-capita terms. The problem is cost and insurance coverage, and in fact some US facilities have had to shut down due to the lack of patients who can afford it, as I understand. But the technology is definitely offered there, for those who can afford it.

[Punky44]

My mom did proton-beam radiation at Mayo.

[Dagmar]

Thank you very much for all the answers. I have been in contact with Heidelberg regarding proton and heavy ion beam therapy. Hope is everything.

[TinaFish]

Germany has one of the TOP radiation centers in the world with new carbon technology. It's better then US radiation treatments and less damage from it. US is the slowest from all the other countries when it comes to cancer treatments and advancements.

https://www.heidelberg-university-hospi ... n-therapy/

Rikimaroo

That's horrible. Really, I just illustrated how impossible it would be for me to move to Germany for treatment, and it seems criminal that the U.S. wouldn't offer the technology that other countries offer.

Actually, the US is catching up in the number of proton and heavy ion beam therapy facilities. I think Japan currently has the largest number of proton and heavy ion facilities of any country in the world, but the US has been on a building spree the past few years and is rapidly catching up in absolute numbers, though still behind in per-capita terms. The problem is cost and insurance coverage, and in fact some US facilities have had to shut down due to the lack of patients who can afford it, as I understand. But the technology is definitely offered there, for those who can afford it.

That's much better news. I remember seeing www.mycaliforniaprotons.com. So it's much moreso recommended to go to a place like that for radiation, right? I may have to have radiation soon. My oncologist referred me to a City of Hope location very close to me, and the radiologist (Dr.Botnik) made a great impression on me. City of Hope has a great reputation, but I don't know if they offer proton therapy.

[MetastaticEquilibria]

Actually, the US is catching up in the number of proton and heavy ion beam therapy facilities. I think Japan currently has the largest number of proton and heavy ion facilities of any country in the world, but the US has been on a building spree the past few years and is rapidly catching up in absolute numbers, though still behind in per-capita terms. The problem is cost and insurance coverage, and in fact some US facilities have had to shut down due to the lack of patients who can afford it, as I understand. But the technology is definitely offered there, for those who can afford it.

That's much better news. I remember seeing http://www.mycaliforniaprotons.com. So it's much moreso recommended to go to a place like that for radiation, right?

It depends. In some cases standard (x/gamma) radiation is considered safer, such as near the colon or intestines, where the risk of punching a hole in the wall (which can quickly lead to fatal sepsis) may be too high with protons or heavy ions. At least that was what proton and heavy ion doctors told me when I needed pelvic radiation. But in many other cases proton or heavy ion beam radiation is better due to less damage to surrounding tissues, and a higher chance of being able to do it again if there is a recurrence nearby, which is generally lost with x/gamma radiation. In the case of my liver, I had to repeat proton treatment due to recurrence in a different part of my liver, so I consider that option to have been priceless.

But anyway, both types of treatment (x/gamma and proton/heavy ion) have their places.

I may have to have radiation soon. My oncologist referred me to a City of Hope location very close to me, and the radiologist (Dr.Botnik) made a great impression on me. City of Hope has a great reputation, but I don't know if they offer proton therapy.

The two locations for proton therapy in California seem to be Loma Linda and California Protons Cancer Therapy Center. Loma Linda has decades of experience with proton therapy, so I would probably lean towards them if I had to choose between the two.

Add: Huh, according to this article there are no heavy ion treatment facilities in the US at present. I could have sworn I saw some conference slide stating that some were coming online soon there, but it sounds like nothing has actually reached the funded stage yet. Sorry for any confusion. Though there are indeed a number of proton facilities there.

[MetastaticEquilibria]

Thank you very much for all the answers. I have been in contact with Heidelberg regarding proton and heavy ion beam therapy. Hope is everything.

Hi Dagmar,

Any details you care to share about your situation?
You don’t have to reply if you don’t want to, of course.

[Dagmar]

Hi metastastic equlibrimia,

I was diagnosed with stage iv colon cancer 2015. I have about 20 lung metastases. I have done some of the standard chemotherapies. Starting oxiplatin today. They say that they cant operate on my tumors. So ofcourse I am looking for alternative. I am only 50 years Old ( sadly some are much younger on this site). Wild kras. Its in my familj.

Thanks
Dagmar

[MetastaticEquilibria]

Hi metastastic equlibrimia,

I was diagnosed with stage iv colon cancer 2015. I have about 20 lung metastases. I have done some of the standard chemotherapies. Starting oxiplatin today. They say that they cant operate on my tumors. So ofcourse I am looking for alternative. I am only 50 years Old ( sadly some are much younger on this site). Wild kras. Its in my familj.

Thanks
Dagmar

Do you know if you are MSI high or not?
Or your tumor mutation burden level? Those might open up some immunotherapy options.

[Dagmar]

Hi again,

I don't know if I am msi high or not. I did all genetic testing in Ireland, I think they only tested for the most common genetics. I was negative on all of them. But I will ask my doctor when I get a chance. Which immunotherapies are you thinking of? Thanks!

[MetastaticEquilibria]

Hi again,

I don't know if I am msi high or not. I did all genetic testing in Ireland, I think they only tested for the most common genetics. I was negative on all of them. But I will ask my doctor when I get a chance. Which immunotherapies are you thinking of? Thanks!

If you are MSI high, or are not but have a high tumor mutation burden, then Keytruda or Opdivo might be worth looking into. If you are not MSI high (that is, you are MSS), then combining Opdivo with Stivarga has shown some promising results, according to a recent preliminary study done here in Japan. Nothing guaranteed, of course.