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NED dancing with someone else... but not me

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

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...

 

Kamushka
Posts: 22
Joined: Feb 2017

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's picture
CheeseQueen57
Posts: 816
Joined: Feb 2016

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

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

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's picture
Soup52
Posts: 902
Joined: Jan 2016

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

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1557
Joined: Jun 2015

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

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

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.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1557
Joined: Jun 2015

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.

BabyCoach's picture
BabyCoach
Posts: 95
Joined: Mar 2016

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!

 

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

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
Posts: 24
Joined: Oct 2016

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?

Beebster
Posts: 20
Joined: Feb 2017

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's picture
Cass83
Posts: 151
Joined: Feb 2017

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
Posts: 529
Joined: Oct 2016

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's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

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's picture
henhill
Posts: 123
Joined: Aug 2016

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
Posts: 245
Joined: Apr 2011

I wish you all the best with your treatments in Germany. I hope everything goes well for you.

Cheerful

a/k/a Jane

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2599
Joined: Mar 2013

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
Posts: 256
Joined: Aug 2016

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's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

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
Posts: 132
Joined: Nov 2015

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

janaes
Posts: 776
Joined: May 2016

Chris, I dont know what to say.  Im sad you have to do this but at the same time i am glad you already have a plan in place.  I hope so much that it works out for you in germany.  Just like Kim I found alot of hope from you having the same MMT as me.  I do love your attitide.  It sounds like you are doing what you have to and fighting like a real fighter 

Love Janae

Hopeful162's picture
Hopeful162
Posts: 82
Joined: Sep 2014

l've not been active on this forum lately, but have been reading off and on, and I just want to send you my best wishes as you persue treatment in Germany! May you have a wonderful outcome which will give us all encouragement for what lies ahead. Bon voyage!

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Regarding Herzog's acceptance policy, I don't know how difficult it is to get accepted.  I contacted the clinic by email and provided them a medical profile/history and my last scan report. After reviewing the material, they told me that they could treat me.

Some of you have asked about the costs of this treatment.  Since I am a Kaiser patient, any treatment outside of Kaiser, unless they deemed it appropriate, would cost me out of pocket, whether in the U.S. or not.  I did investigate a couple of places here in the States, but ironically, felt my dollars would go farther outside of the country, at least right now, since I'm not old enough for Medicare yet.  Herzog does accept some insurance, however, I believe these are all European.  AXA/BUPA/Signal.

As far as costs go, it's not cheap, but it's less expensive than some specialized hospitals here.  There are still some unknowns as far as cost, i.e., different chemos have different costs, etc.  But the base cost per day is approximately $500.  That includes room and board, physician, nursing, all diagnostics done in the hospital, lab tests, infusions, injections, physiotherapy and all other therapies except for hyperthermia, as well as transfers to and from the Frankfurt Airport which is about an hour away.  You can have another person stay with you for about $50 a day which includes 3 meals and tea and cake in the afternoon.  Hyperthermia is on top of that and ranges from 200 to 2600 Euros per session, depending on whether it is local, moderate or extreme whole body.  Patients pay the pharmacist directly for any chemo used.  They require a 6000 euro deposit on the day of arrival by credit card or cash.

Luckily, I have some inheritance money that will pay for treatment for a while, and I have some other options available to me, but it will be a significant financial commitment.  You know what they say about having a rainy day fund...  well, this is that rainy day!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2599
Joined: Mar 2013

Thank you for sharing the details of Herzog with us, Chris.  We all look forward to hearing more from you.

I will say after watching the video - about 2013 - they also gave a link on the work.  http://www.nanoprobes.com/ It is seeking FDA approval.

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

Best of luck Chris! My prayers are with you!!

rcdeman
Posts: 256
Joined: Aug 2016

Dear Chris,

Thanks for sharing the thorough details on the costs and how it would work! Although the costs are not cheap, it still seems more inexpensive than costs here. We are counting on you and Helen, our pioneers, to let us know how the treatments go! This might as well be a future option for some of us here!

Prayers,
Rebecca

Kaleena's picture
Kaleena
Posts: 1978
Joined: Nov 2009

Chris, I wish you all the best (Helen too) on this new treatment path.   Thanks for sharing the information with us.   

Hugs and prayers,

Kathy

cindy0519
Posts: 173
Joined: Nov 2015

Chris, 

Just wanted to add my well wishes.  I too am inspired by your taking things into your own hands.  Controlling our own destingy is so imparative and something that is not often easily done with all this cancer stuff.  I too look forward to hearing more about your experience and will be watching for updates.  

pgdaughter
Posts: 22
Joined: Jan 2017

Best wishes for this new adventure ahead. Many of us look forward to hearing about your experience, but most of all we're rooting for you (and Helen) to have every success! 

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