Sitting at Hallwang
Comments
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Officially Removab is used tolilacbrroller said: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
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.
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Yes,tachilders said: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).
Hope that answers your questions.
Yes it did Tedd. Thanks. Good luck with the txs.
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Tedd FYI, hallwang only doestachilders said: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.
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.
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I got my RGCC testing backtanstaafl said:Yes,
Hope that answers your questions.
Yes it did Tedd. Thanks. Good luck with the txs.
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
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wow...tachilders said: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
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
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Thanks for the update, Tedd.tachilders said: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
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!
Chelsea0 -
Sharing your updates is so helpful to us here.tachilders said: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
Many on the board are following your journey and benefiting from your posts. Stay strong. Wish you all the best. ~ Cynthia
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Thinking of you and your family....tachilders said: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
Sending positive thoughts for the best results.....~ Ann
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Best of luck with thisdevotion10 said: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
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. 0 -
My HMO...lilacbrroller said: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
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.
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My beautiful wife joined meChelsea71 said: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!
ChelseaMy 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
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Hi ct, your story is veryVancouver said: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
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
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New threadAN said: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
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.
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Sorry, u mean they have leftTrubrit said: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.
Sorry, u mean they have left the forum?
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Not because they wanted toAN said:Sorry, u mean they have left
Sorry, u mean they have left the forum?
The treatments did not save them. They both died of this disease.
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My apologiesTrubrit said: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.
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.
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