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Cancer Across the Pond.. Con't

daylady's picture
daylady
Posts: 122
Joined: Dec 2014

Hi Ladies, Well like Edigirl (Chris) I am back from Germany and home for the fall.  This last trip (the 8th in 8 months) was the most challenging.  I didn't do as well with the whole body hyperthermia this time, so Dr. Herzog and I decided that whole body is probably off the table for me, but local hyperthermia and other treatments (including future ablation if necessary) remain viable.  The last ablation was done using microwave technology instead of laser and I was told the method used is based on the size and location of the tumor.  It wasdefinitely harder to get through than the laser ablation, so I was very relieved to have it behind me.  The best part...it worked.  I started this journey with two tumors in my liver (which was the primary concern).  In the US, I was given an expiration date, and more suggested chemo (which had only a 15% chance of impacting anything).  I left Germany with the tumors gone.

This procedure was more challenging to get through, and for the first couple of weeks after my energy level wasin the toilet.  I also developed thrombosis in my lower calves which I am currently being treated for.  Unfortunately, this medication interacts with the medications that I have been using to keep lower back pain in check so pain management has become a new issue.  Overall though, I am pleased with the results and would do it again.  I still have lymph nodes to deal with, tho no new tumors and my other organs are doing OK.  I have had multiple CT's and multiple MRI's in the last 8 months and Dr. Herzog (Chris and I have the same oncologist) says that...yes, they can see them, but they are not doing much so it is time to take a break.  At the moment, it all goes well, I will return in November for 10 days for a tuneup.

My primary care physician has been incredible since I got back and is going to try to help me get a new oncologist within the Kaiser system who is more of a kindred spirit.  I need someone who will help with periodic blood work and scans but not get upset when I take off for Germany if something actually needs to be addressed.  I can't go back to the oncologist who gave me an expiration date (Dr. Herzog said NO, and my PCP agreed) so that is a priority for the next couple of months.  I was up on the fence as to whether I wanted to go back to Germany in November (it's been a long, long, long year...) but my husband trusts Dr. Herzog completely and wants me to go.  So I got my flight tickets, just spent the extra money to get refundable tickets.

Like everyone, I still worry about the next CA125, and the next CT Scan, but more and more I am starting to accept that I don't want to be defined by a number or a picture.  After four years, I am more accepting that things just evolve.  You get up each day and do the very best you can to save your life, one day at a time and to live as well as you can.  That's the best any of us can do. Hoping everyone has a pleasant labor day weekend (hot as hell where we are!).  Hugs all around!! - Helen

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

Even though it was harder, it sounds like you had some good results and that is what is importan.  I can certainly understand finding a different oncologis.  How can anyone know how long another person has on this earth.  He could walk out his door had have a airplane land on him.  I am so blessed with an oncologist that is open to new ideas and is always searching.  He told me that a physician can give you a pull, but God makes it work.  I do like  knowing that my time may be limited.  I work harder on my bucket list.  I can always add new things to my list.

Hugs and prayers, Lou Ann

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1675
Joined: Jun 2015

Helen,

So glad to hear that your treatments are working. Sorry that it was so hard this time though. I didn't see this post before I asked how you are in another thread so just disregard that question! Welcome home. I'm sure you will enjoy every last minute of it before heading back in November. I hope you find a great oncologist partner here in the states to work with you. I think of you often and pray for continued success.

Love and Hugs,

Cindi

Double Whammy's picture
Double Whammy
Posts: 2828
Joined: Jun 2010

Wow, Helen, you have really been through it, haven't you?  The end result sounds very encouraging, tho and I hope this continues.  I do think if there is nothing a current oncologist knows of that will help, then they should tell us, but they should also advise us about seeking another opinion.  Like LouAnn says, no one knows how long one has.  They know the typical outcome/progression, but the don't know about YOU.  I have several personal friends with Stage IV Breast Cancer (sigh, it's far from being all pink and pretty).  One of them has suffered every horrible side effect and complication imagineable and it is so difficult so see her.  She never achieved a break at all.  Another was in complete remission for over 2 years after being diagnosed as Stage IV.  As much as is known about breast cancer, the outcome for these 2 women was predicted as the same but it sure didn't go that way. Imagine how little is known about your type of endometrial cancer and its progression.  I'm so glad you have a good relationship with your current oncologist and your pcp and hope you find a local oncologist to work with both you and Dr. Herzog.  

Suzanne

henhill's picture
henhill
Posts: 123
Joined: Aug 2016

Going forward, I hope all of your time and effort leads to a long recovery.  It all sounds very promising  and I hope you'll find a doctor here who will work with you on your current treatment regimen 

Nellasing
Posts: 529
Joined: Oct 2016

So good to see your post and know you are back safe and sound!  Sorry you had a rough go of it this time but so encouraged that things are looking good and you are going to have a nice long fall break.  Many thoughts of you and big ole (((HUGS)))

Kaleena's picture
Kaleena
Posts: 2024
Joined: Nov 2009

Helen:

thanks for the update.   I am glad to hear you were your own advocate and traveled to Germany and was able to obtain the results you did!   I used to say "I'm not a Bar Code".   We are individual patients and should be treated as such.  I hope you find a great doctor within the Kaiser system.   You deserve better.   But in the meantime, enjoy your much needed break.

Hugs and prayers,

Kathy

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

"One day at a time" - you are so right, Helen! Hoping that every day is better than the last for you (and for us all). Kim

MAbound
Posts: 1065
Joined: Jun 2016

So glad that your trips to Germany have been worth it for you. The trailblzing that you, Chris, Lou Ann, and others have done and are willing to share with the rest of us is invaluable. You never know what will help who now or down the road. Thank you for your courage and generosity.

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