NED dancing with someone else... but not me

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Editgrl
Editgrl Member Posts: 903 Member
edited February 2017 in Uterine/Endometrial Cancer #1

So months later, those suspicious areas that were there in October are still there, along with a few more.  Everything is still very small and contained within the lymph nodes. Apparently, the lymph nodes are still not enlarged, but the two that showed hypermetabolic activity in October are showing more hypermetabolic activity with slightly higher SUV readings.  The good news is that there are no masses anywhere, and the abdomen and pelvic area are still clear. And I am still asymptomatic.

I've been researching a lot since last fall, especially in regard to hyperthermia.  As daylady found, there have been tons of studies and clinical trials done that show impressive results combining hyperthermia with chemo or radiation, most of them done in Europe.  In fact, in Holland, where some of the most highly regarded clinical trials were done, hyperthermia is part of the standard of care for treatment of cervical cancer.  

There are a number of clinical trials going on in this country, but none that deal with uterine cancer. Most facilities that do offer hyperthermia here offer it in conjunction with radiation which is not an option for me. Or they have very specific conditions they treat. Very few offer whole body hyperthermia.

So, next week, I, too, will be winging my way over the Atlantic to Germany, to Dr. Herzog's clinic, to be treated with hyperthermia and low-moderate dose chemo.  I'm very excited about this.  The addition of hyperthermia to chemo or radiation in trials sometimes more than doubled the response to treatment.  I think it's almost criminal that treatment with that kind of success isn't readily available in this country.

As Helen has said, Dr. Herzog has a very integrative approach to cancer treatment with emphasis on maintaining quality of life during treatment and really treating the whole person, not just the cancer.

I am thrilled that my gyn/onc is very understanding and supportive, offering to help in any way that he can moving forward.  Even my ob/gyn, whom I saw last week for a routine exam, was very excited when I explained what I was doing. It's wonderful to have that kind of support from my conventional doctors. 

Germany was never on my list of countries to visit, but I guess now I'll be able to check it off my list!  The adventure begins...

 

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  • Kamushka
    Kamushka Member Posts: 22
    edited February 2017 #2
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    Wow

    Wow! That's all I can say! I admire you and look forward to traveling with you in spirit and support! Onward we go!

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
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    Best wishes and Good Luck

    I'm so sorry you have to do this but we all will be very interested in your journey. God Bless. 

  • beccabtown
    beccabtown Member Posts: 234
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    Best wishes

    I'm sorry you've had this news from your latest scan, but glad that you're able to pursue this kind of treatment. Best wishes. Keep us posted. As always, your attitude is an inspiration to me.

  • Soup52
    Soup52 Member Posts: 908 Member
    edited February 2017 #5
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    Best of luck! I think my

    Best of luck! I think my comments were deleted:(

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
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    Editgrl

    Chris, thanks for letting us know your latest news.  Too bad you and Helen aren't there at the same time! I hope you have the same great results that she has had so far in her treatments. Have a good trip and please make sure to let us know how you are doing. I love your spirit my chemosabe partner and friend. Sending you loads of love and hugs!  Cindi

  • BabyCoach
    BabyCoach Member Posts: 95
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    Welkommen!

    Glad you are taking this control as it sound like a wholestic approach - take advantage of the positive things about Germany and eat a lot!

     

  • Editgrl
    Editgrl Member Posts: 903 Member
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    Editgrl

    Chris, thanks for letting us know your latest news.  Too bad you and Helen aren't there at the same time! I hope you have the same great results that she has had so far in her treatments. Have a good trip and please make sure to let us know how you are doing. I love your spirit my chemosabe partner and friend. Sending you loads of love and hugs!  Cindi

    Actually, Helen and I will

    Actually, Helen and I will overlap by a day.  I arrive the day before she leaves, so we're hoping to meet.  Helen and I live within a couple of hours of each other so it's kind of funny that the first time we meet will be halfway around the world.

  • Kvdyson
    Kvdyson Member Posts: 790 Member
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    Chris, I am so sorry to hear

    Chris, I am so sorry to hear that report. You are definitely an inspiration to me as you were the first one I met on this board with a similar diagnosis. I look forward to your updates and wish you the best of luck with this new treatment. Kim

  • Angelapo
    Angelapo Member Posts: 24 Member
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    Sending good thoughts!

    I'm sorry your scan gave these results but I am glad to hear you are taking this forward with hyperthermia. You too inspire me! I look forward to hearing how it goes. May I ask, was it difficult to get accepted into the program in Germany?

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    edited February 2017 #11
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    Editgrl said:

    Actually, Helen and I will

    Actually, Helen and I will overlap by a day.  I arrive the day before she leaves, so we're hoping to meet.  Helen and I live within a couple of hours of each other so it's kind of funny that the first time we meet will be halfway around the world.

    Oh yeah!  Now, that is

    Oh yeah!  Now, that is something.... I hope you both can make it work. Knowing how important it was for me to have you during my treatments, I just know the two of you are going to become a powerful force in this fight together.

  • Beebster
    Beebster Member Posts: 20
    edited February 2017 #12
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    Herzog Costs and Insurance?

    Any estimated costs of treatment you can share at this point? I've read Daylady's updates with great interest! It is also comforting to hear how supportive your medical team is.

  • Cass83
    Cass83 Member Posts: 151 Member
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    Following your progress

    I will be following your progress! I am new, but you have already been very helpful and I am interested in hearing how things go for you. I will be keeping you in my thoughts and prayers!

  • Nellasing
    Nellasing Member Posts: 528 Member
    edited February 2017 #14
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    Wow Chris-

    You and Helen are our great adventurers!  I am glad you will hopefully meet up, as I'm sure she has a lot of great information to share.  You are both SO brave!  I too am so sorry to hear your dance with NED was interrupted- we had such high hopes that those little buggers were just something else.  Here's hoping that this is just part of the plan to make things even better and that you'll soon be back on the dancefloor with NED!  You'll be held so close in our thoughts and prayers and we'll look forward to your updates as you can give them.   (((HUGS)))

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
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    You"ll still dance with NED

    Maybe not right now, but at sometime.  I am glad to hear you are following Helen's lead and trying out hyperthermi.  It certainly sounds interesting.  Sometimes we just have to be brave and try things that might give us hope.  Hope is always there.  Best of luck.  I will be thinking of you often.  Keep us up to date on how everything is going for you.

    Hugs and prayers, Lou Ann

  • henhill
    henhill Member Posts: 123
    edited February 2017 #16
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    Good for you!

    New treatments are helping people to live with cancer.  I wish you the best, for you and for those who will benefit from this research.

  • cheerful
    cheerful Member Posts: 261 Member
    edited February 2017 #17
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    I wish you all the best with your treatments in Germany. I hope everything goes well for you.

    Cheerful

    a/k/a Jane

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,440 Member
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    Chris, I am sorry to hear

    Chris, I am sorry to hear about the additional spots and eager to hear about your experience.  Between you and DayLady we look forward to hearing more.  Travel safe and hugs.

  • rcdeman
    rcdeman Member Posts: 263 Member
    edited February 2017 #19
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    Chris, it sucks to hear that

    Chris, it sucks to hear that those spots in the nodes aren't getting shrinking. Can't we just have a break?

    But I'm glad to hear you're being supported fully by your conventional medical team to go ahead to Germany for treatment. I know not all doctors would be as supportive of your decision. It looks like Helen has opened up a whole new option for all of us if it is needed in the future. I am wishing you the best results with Dr. Herzog and the whole hyperthermia approach. Please keep us updated on your treatment!

    I would also be interested in learning the costs of going to another country to get treatment. I'm assuming none of this is covered by insurance and you would have to shell out personal costs to cover their treatments.

    Praying for health!
    Rebecca

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    edited February 2017 #20
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    Bad news/good news

    Iwas growing  a bit concerned since you haven't been posting as much lately .  I am happy that there is good news to go with the bad.  I wish you a safe journey and that treatment goes well.  How cool that you will link up with Helen

     

    I am often frustrated and embarrassed by our attitude of superiority in the US.  Why do we think we have all the answers?  Wouldn't it be wonderful if all the world could sing in perfect harmony like in the old coke commercial?  Just think of what humankind could accomplish.

    i shall be waiting excitedly to hear more from you.  xxxooo

  • ncg007
    ncg007 Member Posts: 138 Member
    edited February 2017 #21
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    Chris,  Sorry to hear those

    Chris,  Sorry to hear those suspicious areas are still lingering.  I wish you all the best on your treatment and journey.  Healing prayers out to you.

    Nancy