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gambling on immune system said no more chemo embolisations

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

so today I had my 5th chemo embolisation booked. each procedure is costly, its got costs and benefits and risks.

my oncologist said its not necessary as you have no manifest disease.

so I am trusting immunotherapy 100% now to keep me NED.

I guess thats putting my money where my mouth is. I am giving those little white blood cells all the chances to perform.

I have already done 3 more removabs and two full body hyperthermias in the last 12 days. its been intense.

it represents the treatment choices many have to make. mine choice is NOT to do more chemo based therapies.

I am getting all the support possible for my immune function at the clinic, so time will tell.

Tomorrow afternoon i drive 5 hours to duderstadt and start dendtritic cell vaccine 3. the german cancer makers are above and below the mormal level.

Tomorrow morning i get an amazing piece of medicine called an anti sense viral vaccination that aimed to remove my active hpv 18 virus from my cells.

Today they took blood with the purpose of making a special apoptosis inducer my p53 is over expressed. I wish I had some detailed science to explain these therapies but I don't, if I do I will post it.

hugs,

Pete

rogina2336's picture
rogina2336
Posts: 188
Joined: Apr 2011

Pete you are a true inspiration to us all!! Smile Kim

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

Keep the good news coming!  My biggest concern now is that I won't be able to afford to get enough treatment in Germany, as the initial 3 week estimate will take most of the money I will have.  They only have me scheduled for 3 Removab treatments, one DC vaccine and one TACE (chemo-embolisation).  SOunds like you are taking waaay more treatment than that.

Tedd 

ccfighter
Posts: 360
Joined: Jan 2012

Pete,

Have you considered HPV vaccine therapies since you tumor has an HPV link?  Im jumping over from the gyn boards and was diagnosed with cervical cancer in 2011 stage 2A though am now recurrent and metastatic.  I have spent a lot of time researching vaccine and immune therapy for my particular cancer which is 99.7% of the time HPV positive.  All HPV associated malignancies express E6 and E7 protein which provides a target for vaccines.  So far some decent success in the ADXS11-001 vaccine and INOVIO has one that is reversing high grade precancerous lesions.  Both still in clinical trials, but have heard that preliminary data from the phase II trial of ADXS11-001 is great enough to move to phase III probably in 2014.  Considering you HPV status, this may be of use to you.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010
Dear Friends,
 
Kim, thanks, thats sweet.
Tedd, You can stay with me for free in the apartment 300 meters from the clinic, that will save a few thousand.
 
So now each day, the therapy plan changes, and yes different perspectives between treating specialisists. The reply to the email i sent this morning was, you better come and have those mirco mets chemo and embolised.
 
Some clear benefits in the strategy, controlling existing micro mets in areas of residual disease, leaving the immune system to handle any of mets popping up anywhere else. Also remember the claimed benefits of localised avaistin and the immune system, still experimental and an documented benefit.
 
Leaving money out of the decisions, and I have always just said whats clinically prudent, irrelevant of the funds, I get a feeling that getting the localisedembolisedtargetted chemo the safest most conservative route.
 
So one moment, one direction, next moment next direction. I will discuss Vogel preference with Kopic, I will discuss it with Nesselhut.
 
I have no choice but to love the clinical difference of opinion between these wonderful doctors. Its my choice, its likely will be the most conservative but i will take in all the opinions.
 
hugs,
Pete
 
PS My emails to these doctors are concise and to the point, they won't read through all my BS like you guys,
 
 
Dear Prof,
 
I just wanted to make sure that todays appointment was postponed.
I am down at hallwang and have just gotten over my second removab treatment.
 
I am heading up to duderstadt to do my next vaccine shot with doctor nesselhut.
 
Is it possible to just get an mri, so you can confirm the cancer is not active. 
 
As i have no manifest disease at present, I was considering deferring the embolisation. I will leave you to discuss this with Dr Asir Kopic.
 
I am very grateful for your care, but hope i am well enough not to see you professionally. That said is having the liver and the peritoneum treated periodically in a preventitive way ever been considered ?
 
Your adice about reducing the likelihood of recurrence sincerely appreciated. 
 

cheers

janie1
Posts: 753
Joined: Apr 2011

Good info from ccfighter (above).

Pete, I would sure think the dendritic cell vaccine will be key since you don't have much tumor load now. I don't know what Dr. Chang's (NY) success rate is, but I don't think he would be so involved in the vaccine and sending so many people from the U.S. to Germany if he didn't have some pretty good success. All i know is that the tumor load has to be small before he would allow the vaccine. He is upfront about whether he can help or not.
So anyway, I'm thinking you've gotten this "way down" from where you were 6months ago.

Continuing to root for you and hoping the treatments lessen and lessen.

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

i am rooting for us all. yes cea normal in one test, just above the next.

thats clearly changs weakness then, his inability to offer removab to get tumour load down fast, his only effective tumour reducing tool the gentle vaccine that cannot take on substantial disease. alas germany seems to offer a treatment advantage to those with significant tumour burden. your knowledge of chang really valuable here.

i wonder when someone here, a nice new resected stage 3 colorectal will just pop over germany have 30 vaccines sucked out and stored. go on the preventive program program. you know all the breast cancers ie stage 3 doing post op vaccine had 0% recurrences. i would be surprised if it was not the same for colorectal. this makes post op folfox look really outdated, alas its the gold standard and whats offered. my onc never told me about vaccines! i wonder why ?

i reckon almost all the rectal cancers here would be hpv16/18 positive well at least 83%. the style of vaccine ccfighter has shared has so much potential, but i am always getting easily excited.

hugs,

pete

ps the crystal clear silver lining to conventional medicine moving so slowly is that patients are free to move as fast as we want to towards the only curative options.

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

i will ask doc nesselhut, vaccine guru what he believes re e6 and e7 for my clinical manage.

your comments awesome and informative, the likely of hpv 18 /16 and colorectal almost as certain as cervical. a big piece of the cancer jigsaw got a whole lot clearer. if you cervical gals can have a vaccine, maybe our colorectal kids can also. maybe even a vaccine for us adults.

clinically i can see vaccines being developed to knockout tumour cells and virus cells simultaneously. 

dual purpose vaccines, using ranges of immune cells.

hugs,

pete

smokeyjoe
Posts: 1428
Joined: Feb 2011

Pete, I'm not quite understanding repeatedly getting shots of chemo. and/or avastin into tumors.  Could something in your lung or liver  have been dealt with by radiofrequency ablation (I'm not sure of spelling)  in a shorter course of time??  I figure you can't have radiofrequency to the peritoneum,  and these shots probably work on those well.     Just asking, as I think it's Phil who gets radiofrequency ablation for his lung mets, and it seems to be successful for him. 

Borac
Posts: 14
Joined: May 2012

Pete, I am new to this board but can you please explain where and what kind of treatment you are getting? Did you have regular chemo and surgery? Is this alternative type of treatment? Did you have mets? Where? Thank you so much and good luck

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

just google pete media release hallwang

its crazy how easy it is to find my mess blog. just search for the media release around mid jan this year. the german medical report has a complete summary of therapies.

re  Is this alternative type of treatment? not in my books, it was the only therapy i knew that suggested curative potential, so as i love life, do not want to die, i jumped on the plane with high hopes and no expectations and a few bucks on the mastercard. alas its all in blog and here.

hugs,

pete

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

the regular local embolisations and the other therapies were just the prefered approach recommended by the hallwang doctors.

my sydney hipec surgeon, offered rfa for the lung met. but as i avoided the hipec and I hope the lung thingy is sorted. argument if its cancerous or not. the pet said it was treated disease.

i know about phils treatment success, what's helped him, was not offered to me. the peritoneal spread the key difference and the immunotherapy route offering the only curative option. rfa to the peritoneum not possible to my understanding.

as i love scuba diving, i also was nervous about burning a 1 centimeter spot in my lung. hopefully my immune system can just eat the tumour and i can go diving again with really healthy lungs. of course if these therapies fail, i still have phils types of therapies available. but phil is on chemoi am seeking to avoid chemo, have maximum quality and quantity of life. trying to turn this stage 4 illness into a managable chronic illness, i don't know if its possible to get the ctc's down to zero and the stem cell risk reduced. 

so many potentially useful therapies to help me stay NED, these types of vaccines mentioned by ccfighter just fantastic.

seeing the possible root cause being hpv 16/18 and now effectively a possible curative option coming from the cervical board. how nice to have friends in the CC space. this is a clear advantage of csn having such a board spectrum of cancers, with a few pioneering souls sharing the lastest therapies.

i want to get off avastin and chemo asap. i am testing the strength of my immune system day by day now. going to fortnightly cea's and praying.

hugs,

pete

 

 

ccfighter
Posts: 360
Joined: Jan 2012

These vaccines have been suggested for trials on colorectal, head and neck and lung which all can have HPV associations.  The theraputic vaccines target the HPV 16 and 18 most often, such as with INOVIO and ADXS11-001.  Hence, I threw the idea in your direction.  These are not propholactic vaccines, but theraputic ones, being designed to irradicate the cancer after it has developed, and not just the virus either before or after infection.  They are getting better at making these vaccines, and in my opinion, are working optimally on low tumor burden individuals and those with stronger immune systems. 

http://ir.inovio.com/2012-10-10-Inovio-Pharmaceuticals-Cancer-Vaccine-Demonstrates-for-1st-Time-that-a-DNA-Based-Therapeutic-Vaccine-Can-Produce-Immune-Responses-to-Kill-Target-Cells

http://seekingalpha.com/article/1209821-advaxis-vs-inovio-a-head-to-head-comparison-of-2-cervical-cancer-vaccines

 

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

just awesome, these trials would be great for some of my colorectal friends in the states. the ideas applicable to me as well.

i wonder if these trials have a holistic focus ? or if its standard conventional with no lifestyle.

thanks for sharing these really exciting therapy options here, its up to each of us to search out what treatments right for us, these vaccines seriously worth a look.

hugs,

pete

hippiechicks
Posts: 302
Joined: Sep 2012

Such Awesome News!!! Laughing

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

today is day 1 vaccine 3.

I said my life is completely in your hands and I am gambling the whole box and dice on immunotherapies.

hugs,

Pete

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