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Sitting at Hallwang
 |
Apr 16, 2013 - 9:44 am
and getting my first infusion. Arrived at around noon, had lunch, and then a quick meeting with Dr. Kopic and an uultrasound. He said my liver looked pretty good structurally based on the ultrasound. Started me today with a couple of immune boosting/detox infusions. Not sure what the plan for tomorrow is. Oh yeah, they took a bunch of blood for all the testing they do at RGCC and other places. Might see Dr. Vogel for chemoembolization this week, or may start removab first.... We will see what the doc says. Met Peter and his kids today, and he seems to be doing very well and looks great. Ren will be here April 25 and there are quite a few Aussies here getting treatment. I'll keep everyone updated with my progress here and when I get home. tedd |
Joined: May 2005
Best of Luck
Good luck with the treatments Tedd, I hope you have great results.
-phil
Joined: Oct 2011
I am really hoping you get
I am really hoping you get positive results. Say hi to Pete for me if you see him again.
Joined: Dec 2012
glad you made it
Happy you've put your plan into action. Wish all the best
Joined: Jan 2010
Please keep us posted and know
that you are in our hearts. You are a long way from family and friends. We are here for you. Have courage. Best -- Cynthia
Joined: Mar 2013
Sending positive thoughts....
for the very best results.....thinking of you and your family ~ Ann
Joined: Sep 2012
Got chills when I saw your
Got chills when I saw your post. I really admire how you put this plan into action and made it happen. I'm so excited for you. Can't wait to hear how it all goes. Thank you so much for updating us with your progress. Please say hello to Peter for me.
Chelsea
Joined: Oct 2010
It is glad to see tat you are
It is glad to see tat you are getting the help that you hoped for! We are sending goood thoughts and Prayers from the Mountains in the AZ!
Best Always, mike
Joined: Oct 2011
Good luck, Tedd!
Please keep us posted on how things go. It's very exciting! AA
Joined: Mar 2013
Good Luck
Tedd,
I really admire you for doing this. I do think that this sort of treatment holds out great hope and could possible be the future standard of care. Hopefully, the success of courageous people like yourself and Pete and Renw (who pursue these treatments at considerable personal expense) will one day make them more accessible to all who want to give them a try! I am following your journey with deep interest am hoping with everything I have that this works for you and your family--it will give reason for optimism to all!
Best to you,
CT
Joined: Oct 2010
shorter stories
Sure look forward to a condensed summary about it.
Good luck, Tedd.
Joined: Jan 2013
Hey Tedd, I arrived in europe
Hey Tedd, I arrived in europe yesterday. first week I am however pursuing a thyroid based treatment at a clinic in Prague. Its a very old and promising treatment that has been buried, and its cheap as chips compared to everything else. After that I am off to Nesselhut to start the dendritc vaccine stuff. I'll be at hallwang end of the month.
Are u staying at the clinic? whats the accommodation like?
Joined: Mar 2013
Exciting
Renw,
Very exciting that you have arrived in Europe--I have been checking your blog daily for updates! I hope you and Tedd will both post regularly about how things are going. I really, really hope for improved health for you.
I am following things with great interest for my mom, who is stage IV with mets to the liver. She was diagnosed late Sept 2012 (shortly before you, I believe). I would love her to consider this, though at 77 I'm not sure she'll go for it. She is currently overjoyed by the news she received Monday about her latest scan--no active cancer! It is quite remarkable as her liver mets were VERY extensive and she has only had xeloda (with lots of alternatives similar to yours from Day 1). Her CEA is now less than .5. Let's hope it stays away for a long time, though in the back of my mind I am worried because the liver abnormalities still appear on the scan, but according to the onc, they are filled with liquid--more like cysts now.
I do believe immunotherapies hold a lot of promise and I hope you will soon be living proof!
Best to you,
CT
Joined: Jun 2012
Did my chemoebbolization with
Did my chemoebbolization with Vogel yesterday and had whole body hyperthermia today along with daily infusions of various immune boosting compounds. Both procedures went wefar and I feel fine so far. Next up is removab if my Epcam levels are high on CTC (circulating tumor cells). Should find out soon. Also waiting on some other blood tests to possibly add to infusions. I'll keep everyone updated as much as possible.
Joined: Jan 2013
Tedd FYI, hallwang only does
Tedd FYI, hallwang only does low temerature whole body hyperthermia. If you want the hardcore stuff contact the herzhog clinic. They also work with Vogl and are based at Frankfurt so a short trip to have it done after TACE. They cook you to 43 degrees and its done under general anesthetic. With hallwang its basically what u can withstand and you will be lucky to get to a little over 39 degrees.
Joined: May 2014
Hi ct, your story is very
Hi ct, your story is very encouraging. My mum had colon cancer last Oct and had a resection. But we recently found out that it has met to the liver with multiple lesions. I was wondering if you could share with me what are the treatments your mum went through. Thanks.
AN
Joined: Jan 2013
New thread
Hello An
Welcome to the forum.
I would like to suggest that you start a new thread so that we can help you with any questions you may have concerning your mother's cancer.
Sadly, our dear freind CT (tachilders) and renw have passed from this earth, so there will be no response from them.
We are sorry that your mother has joined the hordes of suffers, but this forum is a wonderful place to get support, comfort, and information.
Joined: May 2014
Sorry, u mean they have left
Sorry, u mean they have left the forum?
Joined: Jan 2010
Not because they wanted to
The treatments did not save them. They both died of this disease.
Joined: Jan 2013
My apologies
CT is not the same as tachildres. You can blame that mistake on chemo brain, but really it was an oversight, and I should have known better.
Joined: Jun 2012
dazed and confused..
Hi, Tedd. Glad to hear you are doing well.
I am confused - - I thought you were going after the dendritic vaccine at Hallwang? But I googled Hallwang and they don't offer it there, or dont' seem to. What is the life extending program that is available there?
dendritic vaccine: Duderstadt clinic http://www.immune-therapy.net/praxisgemeinschaft/therapieverstaendnis.php
Hallwang: http://www.hallwang-clinic.com/en/private-clinic/the-clinic.html
anyway, if you don't mind sharing, would you please explain the difference between the two places. Seems Pete visited both - is that your plan? are you going to get the dendritic vaccine? What is so great about removab? [I got C's in biology in school... reading the technical websites is especially tough for me! ]
merci and take good care
Karin
Joined: Jun 2012
I came mainly for the removab
I came mainly for the removab which is an antibody that works to kill tumors that express high levels of the Epcam marker. All cells express Epcam, but most GI cancers express much higher levels of the marker. The side effects from removab are due to the antibody also having some effect on the normal cells as well, similar to chemo. Still have to get my Epcam levels to make sure I am a candidate for removab. The Hallwang clinic does offer a dendritic cell vaccine through RGCC so I am scheduled to get that as well. Peter gets his dendritic cell vaccine through dr. Nesselhut who does not work with Hallwang. I have decided to limit my initial treatment to Hallwang and then explore other alternatives if I come back for more treatment in the future. I have limited time and budget for this so I have to choose wisely. Many folks here have been here many times before and they just use Hallwang for certain procedures and then do various outside treatments as well.
PteddPtedd
Joined: Jun 2012
fascinating..
Thanks for the info.
I just read about removab (no idea what a malignant ascite is) and checked the NIH.gov clinical trials websites. Seems that the testing is moving along nicely in the US, and perhaps phases II and III have been completed. I can't find any info about when it will be approved in the US but will keep googling.
The US got it right with the KRAS mutation, and does tailor chemo/bioagent depending on the patient's KRAS status. If removab makes it into the US market, maybe patients will be tested for EPCAM also. that would give us all more options.
I contacted an NIH trial for a dendritic vaccine, but was rejected due to lung mets (too sick.) Contacted another trial but was also rejected because I was too healthy.... go figure.
cheers and good luck with your treatments. keep us all posted! I'm rooting for you!
- Karin
Joined: Jan 2013
FYI: removab is used
FYI: removab is used off-label at hallwang.
Joined: Jun 2012
Michael Jackson and horse tranquilizers...
Yikes! Off label scares the crap out of me, like Michael Jackson referenced above. the 1% has to be careful also, that unscrupulous doctors wont' take their money and inject them with who knows what. In that regard, I feel relieved at being in the 70% ? (middle class) that is regulated by insurance decisions.
well geez. If removab is successful in reducing gastric tumors (mind you - C in biology), when will it become "on label" for our type of cancer? How does this happen? Do doctors have to publish papers and convince peers of off-label effectiveness, and eventually the approval process for that particular use is sponsored by a drug company, for instance? I remember reading that avastin (one of our drugs) was being tested for ovarian cancer. Not sure if it got approved, though.
http://www.clinicaltrials.gov/ct2/show/NCT01200121?term=removab&rank=15
the dendritic vaccines are moving along thru the FDA process, and will be part of standard treatment (so I'm told.)
Hope it works for you Tedd!
cheers
Karin
Joined: Jan 2013
Officially Removab is used to
Officially Removab is used to treat ascites. hallwang uses it for epCam positive mets. I see nothing wrong with off label use when the science make sense. I am currently on 5 different drugs, all off-label.
Joined: Oct 2010
misc immune / molecular tx?
Tedd, I lost track where you went with vitamin D3/blood testing, cimetidine or celebrex last month.
Joined: Jun 2012
They are doing the chemo
They are doing the chemo sensitivity testing here but results aren't back yet. They also test the tumor cells for sensitivity to other substances but not sure exactly what compounds. they asked me to get vitamin D level and celiac antibody checked before I came so I had that done at northwestern before I came. Vitamin d was in normal range at 47 and celiac antibodies were all negative. I am waiting on the RGCC testing before starting any additional things like cimetidine or Celebrex etc.... Hope that answers your questions. Main things I am here for are chemo embolization (done one already), removab (not started yet), and a dendritic cell vaccine (likely at the end of my stay).
Joined: Oct 2010
Yes,
Hope that answers your questions.
Yes it did Tedd. Thanks. Good luck with the txs.
Joined: Jun 2012
I got my RGCC testing back
I got my RGCC testing back and my CTCs show good sensitivity to all platinum compounds (cisplatin, carboplatin, and oxalaplatin) as well as 5fu, avastin and irinotecan. The bad news is that I have a high expression level a gene called MRD1 (multi drug resistance) which means that interferes with the efficacy of the drugs. my tumor also has a high level of metastatic potential and high level of incisiveness. All in all a tougher tumor to treat due to the drug resistance. Did my first removab on Friday and it kicked my butt. After about 3.5 hours I started shaking like a rag doll and the fever started. I ran about a 104 fever for 6-8 hours and was barely able to stand that night. However by the next afternoon I was up and moving. Had one episode of attempted vomiting (stomach was empty so nothing came up) but I think that was more due to meds than removab. Everyone at the clinic says you want a strong reaction and I got one so that is good. Only issue I have now is trying to get everything in before I need to go home. Part of the RGCC testing is also for viruses your CTCs might be harboring and I tested positive for herpes virus 2 and human papilloma virus 16. They have antiviral treatments for those that I will likely take. Finally I am still planning to get the RGCC dendritic cell vaccine. I'll update again when I have more to share.
Tedd
Joined: Jun 2012
wow...
that's really cool. Maybe someday soon when we're diagnosed with colon cancer, the doctors won't be like "Heeere's your FOLFOX; have a nice day" without doing any kind of testing, but instead will send off our tumor bits to a lab which will determine such things you've just been told. Instead of just dumping FOLFOX on us, the results might say " your tumors express xxx .. whatever"; oncologists can choose from a suite of drugs that work well with those gene expression. And FDA approves drugs for the gene expressions, and not necessarily the type of cancer. You could get Herceptin (a breast cancer drug) or removab as first line treatment, instead of our friend FOLFOX.
seems your testing is validating that the traditional colon cancer drugs will work on you, though, which is good, as you'd be sailing in charted waters with those.
Interesting on the HPV though - my friends are having their daughters vaccinated. I guess more attention should be paid to boys; there may be a connection between it and CRC that has nothing do with interference in our corn holes.
removab sounds nastier than oxaliplatin! but if it's really powerful and does the job, hey, no pain no gain, right?
good luck and keep us posted
Karin
Joined: Oct 2011
My HMO...
pays for (and recommends) those shots for boys too. My girls had them, and my son will definitely be getting it too. If there's any chance it can guard against future cancers, I'm in. AA
PS I believe Removab is in patient trials here in the States, if anyone was interested in looking into that angle.
Joined: Sep 2012
Thanks for the update, Tedd.
Thanks for the update, Tedd. Have been wondering how you're doing. It all sounds very exciting. How are you holding up emotionally? I'm guessing you must be missing your family a lot. Hang in there!
Chelsea
Joined: Jun 2012
My beautiful wife joined me
My beautiful wife joined me on April 22nd and that has made a world of difference. She will be staying until I leave which is now may 11th. Looks like my plan will not include the dendritic cell vaccine and instead will include a 2nd trip to dr vogl for a second chemo embolization.
Tedd
Joined: Jan 2010
Sharing your updates is so helpful to us here.
Many on the board are following your journey and benefiting from your posts. Stay strong. Wish you all the best. ~ Cynthia
Joined: Feb 2011
Best of luck with this
Best of luck with this treatment ... these posts are really fascinating, may you have WONDERFUL results with this
On Friday I went down to take part in a "clinical trial" DNA testing, genome sequencing, molecular profiling, DNA mapping whatever they call it. Won't find out the results for a bit though. The interesting thing is I had a doctor come in asking me to fill out a questionairre, 13 pages looooonnnng , they said this is all new and they don't really know how to "pitch" this to patients. I found this surprising as I would think (I could be wrong) but wouldn't we all love to have this information at the early stages of our treatment!!! I also kinda figured that once they have your tumor it's tested for whatever, and they could do what they wanted with it ..... nope I had to sign all these waiver forms.
Joined: Mar 2013
Thinking of you and your family....
Sending positive thoughts for the best results.....~ Ann