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A few steps closer to Germany and Hallwang....

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

Got my paperwork and filled it out for the accelerated death benefit clause in my life insurance policy, and my doctor at Northwestern filled out her part.  Should be able to send it back in within a few days.  My boss at work is trying to tie my Hallwang treatment into a visit to our manufacturing site in Belgium, which means my flights would be free AND I would get to fly business class.  I have sent my medical records to Hallwang and have heard back from them on a treatment plan, as well as getting an estimate of the cost.  Have also contacted RGCC-USA and have found a doctor within 2 hours that can submit a blood sample to them for me to start my cancer genetics analysis.  All in all, I'm getting everything in place for an April/May 3-4 week visit to Hallwang. 

 

Tedd

Phil64's picture
Phil64
Posts: 519
Joined: Apr 2012

I'm following your quest!  And I'm praying that all the details come together and lead to a successful treatment!!!

Thanks for the updates. 

God Bless,

Phil

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

I am becoming convinced that this is currently the best/only shot to try and significantly extend my life.  I would love to think this can cure me, and maybe it can, but adding 2, 3 or more years to my life would be worth every penny.  I pretty much know where standard chemo will take me, and its not where I want to go (time-wise).  I will likely still take some type of chemo after Hallwang, unless I miraculously get to NED and don't need anymore chemo.  Their plan is 3-4 weeks of treatment, and then a consultation with my oncologists here to recommend follow-up treatment here in the US.  I may need to go back in 3, 6 and/or 12 months for follow-up Removab or DC vaccine treatment in Germany, but quite frankly until I do the initial treatment and follow-up here I won't know where I stand.  I think it will take several weeks after the treatments in Germany to see an effect in my case, as my CEA level is low and will not be a good indicator of treatment effectiveness.  I think we will have to rely on CT and/or PET scans to see if the German therapies work. 

Tedd

lilacbrroller's picture
lilacbrroller
Posts: 334
Joined: Jun 2012

congratulations.  I hope you will post or blog about your experiences?? 

 

- Karin

sdp's picture
sdp
Posts: 171
Joined: Jan 2012

Hi,

I had my colon and liver resection in Regensburg germany.
Am based in India, just finished the maintenance chemo of erbitux after the resection which was done in august 2012.

Scans scheduled for mid march 2013. Will be making a follow up visit to Germany . I would like to know what tests and further treatment i can do in Germany in April 2013, to get rid of the circulating chemo cells to prevent recurrence..

Let me know what treatment is planned for you and the costs associated .

I would definitely Want to Do some treatments to deter the recurrence .

Awaiting your response

Shitul

sdp's picture
sdp
Posts: 171
Joined: Jan 2012

Hi,

I had my colon and liver resection in Regensburg germany.
Am based in India, just finished the maintenance chemo of erbitux after the resection which was done in august 2012.

Scans scheduled for mid march 2013. Will be making a follow up visit to Germany . I would like to know what tests and further treatment i can do in Germany in April 2013, to get rid of the circulating chemo cells to prevent recurrence..

Let me know what treatment is planned for you and the costs associated .

I would definitely Want to Do some treatments to deter the recurrence .

Awaiting your response

Shitul

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

I'm stage 4, mets to liver, lymph nodes, lung and peritoneal cavity, and not a candidate for surgery due to widespread mets.  The treatment they outlined for me was Removab (3 tx), dendritic cell vaccine, and chemo-embolization of the liver (due to previous liver problems), lus some immune boosting therapies and heavy metal detox, etc....  I'm guessing they might also suggest chemo-embolization of the peritoneal cavity and maybe even lungs when I get there.  The estimated cost for ~3 weeks of treatment was 51k euros, or approximately $70k USD.  Definitely not cheap!!!  The follow-up plan could include additional visits to Hallwang at 3, 6 or 12 month intervals for additional treatment.  They also plan to consult with my oncs here on what we can do in the US.  I was diagnosed in June 2012 with very advanced disease, so in my opinion this is about the only option for longer term survival for me (although I also plan to look into John23s TCM therapy to use on top of whatever else I do).

Tedd 

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

Tedd,

I am sitting in the hallwang infusion room typing this, i just had removab today and basically no noticable phsiological result. started 11am just finished 9.30pm. lots of drips. lots of study and chatting. some great tasty food, its not hardcore vegan don't worry, i think you will enjoy the food. i do.

I had no high temperature, no uncontrollable shakes, no vomitting. so i will see what the doctors plan, i suspect they will up the dose from 5mcg to 10mcg, but i think they

will wait a few days. I am blessed and even more grateful the first treatment worked so well.

A friend sitting next to me was on a similar drug ( not removab ) but he good a good reaction he was vomitting uncontrollably, and shivering etc etc.

I am just sharing the experience, if you are blessed with a good reaction, which is really unpleasant well i think it bodes well for the effectiveness of the therapy.

So I am having a normal peaceful nights sleep knowing i have and am doing the best therapies. talk about a coincidence, i could reply to your post with some really relevant info.

I have published my treatment estimate on my blog as well as the rgcc results, have a look if you want. we can compare the results if you want when you get yours. did they ask you to do the cfs panel ? i hope so you need it. 

Start practicing in the finish sauna, i always do 15 minutes, then my heart pounds. it really helps with the whole body hyperthermia. Also learn how to meditate.

TEDD, JUST THINK NED, failure is not an option. If you don't clearly aim at the stars, it makes achieving the dream almost impossible. Your name ryhmes with NED how cool.

Its a good omen.

hugs,

Pete

janie1
Posts: 753
Joined: Apr 2011

Good for you, Tedd....
Wow - you've come a long way. Been doing your homework. I agree, I think you have to give it a shot.

I've been reading on Colon Club about a particular clinical trial. I am going to be tested in a couple of weeks for it. Had good results - Phase 1 - but I am super nervous about a Phase 1, but I don't have any other options, except to do what you are doing. I thought I would try this first.
I only (?) have tumors in the liver, but fast-growing. Have an hai pump, too.......so that makes me wonder if I could even have chemoembolization with the catheter going into the hepatic artery. Pete gave me homework and told me to email the doctor in Germany (now I forget which one).....and ask the question and report back with the answer. I haven't done it yet, been soooooo overwhelmed with various things.

Anyway.....I think this should give you some piece of mind, which is very important. I will be praying for you all the way.
I just told my husband about you. We've been discussing Pete's journey. Hubby wants me to do whatever it takes.

Chelsea71
Posts: 1170
Joined: Sep 2012

Hi Tedd,

This is very exciting news. I think you're doing the right thing. I hope you achieve NED but even if you don't, this should buy you additional years. I too enjoy the fact the Tedd and NED rhyme.

Chelsea

luvinlife2
Posts: 172
Joined: Jul 2012

I'm really happy to hear this is working out for you Tedd!  I can't wait to call you Ned!!!!

Wishing you all the best with your treatments Smile

annalexandria's picture
annalexandria
Posts: 2325
Joined: Oct 2011

I'm very happy that you have been able to find a path for yourself that gives you hope for the future.  Look forward to hearing your updates once you get started!  AA

PhillieG's picture
PhillieG
Posts: 4683
Joined: May 2005

It's great that your company is tring to help you however they can. It's not unheard of (I had similar help - not travel wise but they went out of their way to get me better insurance and get me on staff instead of my temp status at the time) but I've propably heard more hoor stories when it comes to work and cancer.

You've researched this, developed a plan, send in your papers!, and everything else you could do so when you arrive you can all get down to business.

Keep us posted if you can. I truely wish you the BEST of outcomes with your/their plan.
-phil

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

My company has been great.  After I was first diagnosed and had surgery, I was anxious to get back involved at work (from home via computer/phone meetings) as we had some critical stuff going on with one of my projects.  I had surgery on a Monday, and went in the following Monday to see a few people and get my computer.  My wife thought I was nuts, but as I explained to her, we needed me to keep my job for salary, health insurance, life insurance, etc....  I also mentioned this to a few co-worker friends.  A few days later, I got a call from the head of my division personally assuring me that I had nothing to worry about and that I should take all the time I needed to get better.  I thanked him, but was still back to work full-time 6 weeks after surgery, and have worked full-time right through my 8+ months of chemo.  In fact, my supervisor just told me that I got the highest possible performance ranking for 2012 (first time I ever got that), despite being diagnosed with cancer in June 2012...  I still did more work than anybody else in my group despite the 6 weeks off.  As I have said on here before, I am very lucky to have a good job with very good benefits, a great family, and awesome friends.  I have one of the best support systems you can imagine, and I have also helped myself by being very financially conservative throughout my life.  I also made a very good decision 15 years ago to buy a 20 year guaranteed rate term life insurance policy when I was young and healthy.  That decision is what may allow me to go to Germany now for treatment.

Tedd

renw's picture
renw
Posts: 282
Joined: Jan 2013

Hey Tedd, be good to have some additional company. I booked my flights last week and will arrive at Hallwang 25th of April. I intend to stay for at least 6 months in europe, though probably not at hallwang for all that time due to cost. A lot of the german stuff can be done, at 1/10th of the price in The Czech Republic, about 4 hrs drive from Hallwangen, though the important stuff like Removab, Immunotherapies and Chemoembolization I will do in germany.

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

I will only be there for 3-4 weeks, as that is what they outlined as the initial treatment time-line.  I will then come back home and continue treatment here, going back as needed for follow-up treatments (assuming the initial treatment gives me some success).  Right now, I'm looking at around the 3rd week in April as a start date...

Tedd

renw's picture
renw
Posts: 282
Joined: Jan 2013

3-4 weeks was the plan they sent me as well, but somehow I don't think 3-4 weeks will be enough. The immune system is also stronger in summer, so spending 6 months in europe is a good way to avoid the Australian winter. Basically I am giving myself more time to do additional chemoembolization treatments and other stuff if needed.

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