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Home from Hallwang

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

Well, I am home from Hallwang and will report all that happened and will be happening below:

First off, I will start with my pre-treatment bloodwork.  Everything was pretty normal, even with my liver which has the biliary stent with bilirubin at 0.5 (normal is 0.1-1.2), Alk Phos enzymes a little high, other enzymes normal or just a few percent high, and blood counts all pretty much normal.  CEA was 4.2 (normal and down from 5.7 at diagnosis) and CA19-9 was 69 I believe (don't have the numbers in front of me).  The RGCC testing indicated my tumors should be susceptible to platinum drugs (oxy, cis and carbo), 5FU, irinotecan, and a couple of other chemo drugs (mitimycin C and bendastumine).  However, I had very high expression of a gene called MDR-1 which stands for multi-drug resistance, so my tumor has high potential for becoming resistant to drugs.  My tumor also showed very high expression of invasiveness potential (metastasis), angiogenesis (creating new blood vessels to feed it), and high expression of EGF (KRAS mutant so not unexpected) as well as RAS (might be a good candidate for treatment with a virus in clinical trials from a company called Oncolytics which targets cells with a RAS mutation and kills them).  My total cholesterol was a bit high at 210, but my HDL (good cholesterol) was 70 which was well above the recommended 45 limit.  Also, my tumor had over-expression of insulin like growth factor, which means it is very good at taking up glucose. 

Now to the treatments.  I received one chemo embolization of the liver by Dr. Vogl where he injected mitomycin C, irinotecan and avastin directly into the liver, which was followed the next day by whole body hyperthermia.  After that, I had to wait for my RGCC results, so I did immune boosting infusions for about 8-9 days before my first removab.  Note: If at all possible, get your RGCC testing done before you arrive at Hallwang and it will save you lots of money!  I did 2 removab treatments (5ug and then 10ug) but could not get in a 3rd removab or 2nd Vogl before leaving due to my liver not returning to normal quick enough, but Dr. Kopic said that my 2 treatments appearedto work very well.  I also received an antiviral treatment, as my CTCs (circulating tumor cells) showed infection with HHV2 (herpes virus 2) and HPV16 (human papilloma virus).  Treatment included daily infusions as well as daily pills.  The removab treatment caused me high fever and weakness for 1-2 days, starting 3-4 hours after infusion began.

Finally, I was sent home with a suitcase full of supplements (based on RGCC testing) as well as metformin to lower glucose, and was also instructed to go back on low dose Xeloda (1000mg/day) and also to go back on avastin.  Dr. Kopic recommended getting CT scans in 6-8 weeks to see how well the tumors responded to the treatment.  If I see positive results, I will likely go back in late-August for more removab and chemo embolization treatments, but will do it as cheaply as possible.  Total cost for my 4 week stay was about 48k euros.  I think I can go back and do another treatment for under 30k euros.

Tedd

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

Good to hear you made it home safely. I'll still be here in August so if things go well, look forward to seeing you again and receiving more great advice and feedback on the hallwang treatments. :)

jimc43
Posts: 5
Joined: Jan 2013

tachilders, thanks for the update.

Curious on your xeloda dosing.  Is it 1000 mg once a day or 500 mg twice a day?  What time of day do you take it?  Who originally put you on that unusually low dose?

Thanks!

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

It is 500mg morning and another 500mg at dinner time. I have never been on Xeloda just infusion 5FU. I should have said go on xeloda not back on xeloda. I did infusion 5FU for 9 months prior to going to hallwang. The recommendation for 1000mg per day came from dr. kopic at hallwang as that dose will help control the CTCs but will not interfere with the removab by affecting WBCs too much. At least that is what I understood dr. Kopic to say. 

lilacbrroller's picture
lilacbrroller
Posts: 306
Joined: Jun 2012

I'd shake your hand to welcome you but my skin will fall off... ha!   It's not that bad really. Hand/foot kicked in after the second cycle, but I"m on a baby elephant dose.  Several of us on this board are also members of the Xeloda club.  

cheers

- Karin

tanstaafl's picture
tanstaafl
Posts: 977
Joined: Oct 2010

Tedd, thank you for your posts.  

Is that 1000 mg xeloda every day or cyclical like 2 weeks on, 1 week off?

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

Every day is what I understand the recommendation to be. I'll be getting avastin every 2 weeks as well. 

Tedd

Phil64's picture
Phil64
Posts: 480
Joined: Apr 2012

Tedd, Good to hear the update.  I'll be watching for more posts.

 

Phil

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

i a likely starting xeloda also, i pray you get the best result.

its a big step leaving your counties medical system,  soon i pray we get these therapies for our other friends needing them.

the future is called personalised translation oncology, it will change the cancer world and save many of us.

you and your family are in my prayers, your success being watched by 100s, welcome to the trailblazers. i was so nice meeting you.

i am in the infusion room now. getting hammered as i  am goung home to sydney in a month.

hugs,

pete

smokeyjoe
Posts: 1428
Joined: Feb 2011

Wow,  I am surprised you are back already,  I thought these treatments would go on for a while.    So, now that you are back do you return to your oncologist here to get the xeloda and avastin treatments?     Hope you get wonderful results from this,  it is all so very interesting.    Why are these treatments not more widely available???

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

most western countries need / require clinical trials to prove effaciousy of therapies.

alas we are now in an era where the limitations of stadnardised medicine, one size fits all is clear to many, especially patients.

I am confident Ted, Ren and I and so many others will get great results, i have faith is these therapies despite my current chllenge small recurrence number 2.

the trailblazers will kick down the doors of conventional oncology, i think in a few weeks after asco, immunotherapy will be imprinted on the cancer landscape.

how long before vaccines are available for you ? i dont know, alot, a mountain, say as big as everest in work has to be done. 

assessing imunocompetance, managing treg/msdc etc etc, genetically profiling tumours, changing surgical practices to be immuno friendly , these will all happen. watch my blog and my new website

i just registered another domain name personalisedtranslationaloncology , as long as i live I fight to make sure these therapies are available to all who want to have a go.

i thinks ted onc is supportive, my onc is supportive, he is going to be so happy to finally get some chemo into my viens. but does 500mg xeloda for breaky and dinner count.

hugs,

pete

herdizziness's picture
herdizziness
Posts: 3442
Joined: Apr 2010

Here's hoping your scans show improvement.

samaulton
Posts: 1
Joined: May 2013

Hi Tedd

I just joined this site to say glad you are home safe and sound and hope all goes well with new treatment direction. I am leaving today and feel some unexpected trepidation but I am sure my 3 week holiday on the way will be brilliant....just no more pancakes please! Or maybe I will have to double my metformin....is that the name of the glucose one! Havent pulled them all out yet.

Love to Jane

 

Sam xx

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