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First post-Hallwang CT results

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

I know some of you have been following my experience at hallwang with interest, so I wanted to post the results of my first post-treatment CT scans.  Pete and Ren W are also taking treatment in Germany (not all at Hallwang), and have been including treatments, diets, supplements, etc... that Hallwang does not offer.  I went there and basically did what they recommended, and continued that after returning home.  To summarize, while at Hallwang I had a TACE (actually by Vogl in Frankfurt but arranged through Hallwang) of the liver, followed the next day by whole body hyperthermia.  I took infusions every day I was there, and had 2 removab injections.  According to Dr. Kopic, I had an extremely good responbse to the removan based on the bloodwork they do and the side effects that I experienced.  His words were that removab "was a very good drug for  me".  After leaving Hallwang, I was given a bunch of supplements to take daily, as well as instructed to go back on avastin and to take 1000mg of Xeloda daily (2 x 500mg pills), and to take 500mg Metformin daily.  I have been following that protocol pretty well, with the exception of missing an occasional dose of some supplements due to not bringing them with me to work or when eating out, etc...  I'm sure that is common with many treatments.  Anyway, here are the results:

Good News:  No new tumors noted and no significant progression of disease despite not taking any systemic chemo for 8 weeks or so.

Bad News:  No shrinkage of any tumors, and if anything slight progression in several tumors.  Most perplexing to my oncologist was the large liver tumor that received TACE as well as Removab, as it had definitely not shrunk at all and probably showed the most progression.  I had slight progression in some lung tumors, and I'm starting to get ascites fluid building up in my peritoneal cavity.  Clinically, I'm still "stable", but things are going in the wrong direction... 

Pending:  CEA and CA19-9 levels.   

My Analysis:  Removab and TACE do not appear to have helped me at all. 

Plan moving forward:  First, my oncologist wants me to get a PET scan to look at the activity levels of the tumors that have grown to make sure there is not necrosis going on that we can't see on the CT scans.  Second, she wants to biopsy one of my liver tumors and re-test KRAS and BRAF to see if it the same as the primary tumor that was biopsied a year ago.  If not, KRAS mutant then we could consider Erbitux.  Third, she wants me to start FOLFIRI plus avastin within the next few weeks (after we get PET scan results).  Fourth, I will likely need to get some fluid removed as it is causing me discomfort and affecting my ability to sleep. 

Final thoughts:  I don't want to discourage anyone else from considering Hallwang, but be prepared that what they offer is no guarantee of success.  Pete has done so much on top of the Hallwang protocols that it is nearly impossible to know what may have helped his case.  I don't want to go into detail about Ren's experience without his approval, but maybe he will post his initial results after TACE and Removab (plus a few more things he is trying).  Right now, I don't think I can justify spending another $60,000 plus for more Hallwang treatments.  I will be sending the CT scan results to Dr. Kopic for his review, but will likely start FOLFIRI and then re-consider Hallwang at a later date.  Wish I had better news to share...

Tedd      

jen2012
Posts: 1195
Joined: Aug 2012

Tedd - I appreciate you taking the time and giving such a detailed and easy to read explanation of your treatments and results.  I'm very sorry to hear that you didn't have better results.   I hope that your onc's plan turns things around.   I will keep you and your family in my thoughts and prayers.

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

Dear Ted:

Thank you for sharing your results so far. I know this was a big decision and you have stately clearly what has been done and why, which can benefit others.

I am sorry you have mixed results and can relate since I am stable and my tumor load is on the right side of my liver. Sirtex is being used to attack this area.

My oncologist said it is typical for chemo to not be effective with liver tumors for some people.....ugh, we all go through so much....

Even though I am stable and off chemo for now (August is a PET AND CAT) I keep wondering what will this fall be like or if something will reappear, as well as the close watch they are keeping on my brain area.  Most likely, I will go on avastin and xeloda after scans........

I have been fortunate to be back at work but and trying to enjoy summer as best I can.

It seems Erbitex has helped many and I hope this will be an option for you. I am KRAS mutant so it is not an option.

Haven't been back to N. Western and am being treated locally. I feel I am in the right place for now.

Just wanted you to know I am thinking of you and hopefully with the new testing you will have different options

and get relief from the fluid.

Wishing the best for you

Sincerely - Barb

 

 

 

Sundanceh's picture
Sundanceh
Posts: 4282
Joined: Jun 2009

I appreciate your honesty. 

TACE is offered here in Texas and I spoke with my onc about it the other day....and I had read some about it. 

My onc did not dismiss it, but felt that the response to it was not always favorable, but at least it is offered there for those that want to try it.  He didn't offer it to me, because he feels that RFA or SBRT can work in the situation I'm in right now.

I can understand your concern about not further investing in these treatments, as they appear to not have worked.  I'm sorry that the results were not better for you - I know you had promise towards it.

But, you've said it already...those treatments are not an absolute assurance as it has been touted.

Hoping for better news with the revamped plan of attack.

annalexandria's picture
annalexandria
Posts: 2202
Joined: Oct 2011

I so wish the news was better, but I think that if you hadn't tried it, you would have been left with wondering if you had covered all your bases.  And it sounds like there could still be some positive results, if some of the tumors are determined to be necrotic.  I wonder if these procedures can continue to show results further out from tx?  No significant changes or growth after eight weeks is not terrible news either.

I'm glad that your doctors have more ideas for you, and am hoping the best for you.  Hugs~AA

 

Chelsea71
Posts: 1170
Joined: Sep 2012

Thanks for sharing all this info Tedd. I wish you could have had better results. I think you will have a good response to Folfiri.

Chelsea

thingy45's picture
thingy45
Posts: 576
Joined: Apr 2011

Thanks for sharing in such a detailed manner, just sorry to read it did not provide you with the results you hoped to achieve 

Get relieve from the fluid build up so you are able to enjoy a good night ssleeper set is important.

hugs Marjan

 

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

the first ct, which shows progression, could be necrosis, i have heard of this before.

ijust pointing out some differenes, between my experience and ted.

potentially less big chunky mets, no  prehallwang chemo, different genetics personally and  re tumour. i stayed hallwang 10 weeks initially and did dc vaccine as well, i had 3 taces.

i just arrived hallwang 5 minutes ago to start getting serious with recurrence 2.

i still havr faith in these therapies, i never touted anything, i presented a set of therapies that maybe able to help a few of us have a better quality and quantity of life.

i still believe in miracles, generally provided by god through the immune system, praying the pet turns up some good news.

it was nice to meet you and your wife ted you gave hallwang a good try, i wish you had a miracle, all the best no matter what you decide.

 

janderson1964's picture
janderson1964
Posts: 1574
Joined: Oct 2011

Anna is right at least you tried so you werent left wondering what if. You never with this disease. The results are what you/we wanted to see but it might have progressed more without the German treatments. Cancer can create so many mysteries.

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

I have no regrets and have not given up hope in the German therapies just yet. I will send the last 2 ct scans to dr kopic for his analysis.  I'm not starting folfiri for a few weeks yet so there is some time to ponder and reassess. Thanks for all the well wishes and support. 

LivinginNH's picture
LivinginNH
Posts: 1292
Joined: Apr 2010

Hi Tedd, I was really hoping that you would be sharing better news, but it is what it is, you tried.  I hope that you can now take some personal time from work and just relax with and enjoy some family time.  Keep up the good fight for those lovely children.

All my best,

Cynthia

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

Stable disease after 8 weeks with no systemic chemo and just flu like removab symptoms does not sound too bad for the limited time you had for removab and tace. Actually I quite envy your results. :)

tanstaafl's picture
tanstaafl
Posts: 959
Joined: Oct 2010

You might want to stay on a treatment path until you have the CEA and CA19-9 results.   If a treatment even slows this stuff down CEA-CA19-9 wise, that's progress.  More stable or slow gives extra chances to figure something else out.   My view with my wife is to find one more thing, that I can measure to infer something like a 1%/month favorable change in growth rate.  All the percents added together, one claws one's way forward.

At 1.001^mo, not quite good enough, long term. At 0.999^mo, we're winning.

0.9^36 = 0.02 is roughly her worst remaining liver lesion, as last imaged.

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

I will wait until after all results are in (CEA, CA19-9 and PET) before making any big decisions about treatments. However, my CEA was in the normal range (4.7) prior to even starting treatment in Germany. CA19-9 was above normal at like 55 or so.  

PhillieG's picture
PhillieG
Posts: 4667
Joined: May 2005

I wish you had better results. Thank you for sharing them with us. Some will likely disagree with me and that's fine because no one has the answer (because there isn't one IMO) but cancer is very random and there are many treatment options that work or that don't work.

  • one needs to get the best possible medical team possible
  • results vary

i hope you're able to use Erbitux. I had good results with it obverse the years. The rash lessened by 90% after some time for me...

annalexandria's picture
annalexandria
Posts: 2202
Joined: Oct 2011

wanted to mention that I read on another forum that taking a course of antibiotics before starting tx apparently reduces the rash significantly.  I haven't done any research on this, so don't know if this is accurate or not, but for those starting this drug, it might be worth looking into this angle first.

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

CEA and CA19-9 results are back.  The pre-treatment numbers from Hallwang were actually 4.2 and 65.6, respectively (I think I may have had a slightly different number in previous post).  The June 2013 post-Hallwang numbers are 5.2 and 68, respectively.  Note that these were done at different labs, so that may account for some slight difference.  My oncologist felt the numbers were steady and not worrisome, but they also did not show any imporvement post-Hallwang treatments.

 

Oh yeah, I apparently now have a new hiatal hernia, or at least this is the first time it has been mentioned on a CT report.  I'm wondering if the abdominal ascites is part of the problem.   

Tedd

tanstaafl's picture
tanstaafl
Posts: 959
Joined: Oct 2010

For us, when things were going to ****, progressing, CEA and CA19-9 were doubling in 5-6 weeks.  We found enough chemistry to reverse the CA19-9, maybe stop the CEA but one cluster was still physically growing. Finally found a surgeon to go get that largest, nastiest part out (conglomerated para aortic lymph node cluster like grapes bursting out of a sack) and have been working off the rest of the gang for two+ years.  With the elevated CA19-9 tissues, we use daily cimetidine and light chemo to stop the sprouting of mets, amongst many. 

No single approach worked enough, multiple doctors and treatments have had to be brought to bear independently. 

smokeyjoe
Posts: 1428
Joined: Feb 2011

Thanks for posting, I've been wondering how this went for you....

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

Had paracentisis to remove the ascites fluid about 10 days ago, and they took off 1.7L (1/2 gallon) of fluid.  I think it is starting to come back though.  Had my PET scan today, and will post results as soon as I get them.  Right now, I am scheduled to start FOLFIRI + Avastin on July 16th, unless the PET shows significant necrosis of my tumors, at which point I might switch gears and go back to Germany for more treatment....  To be honest, I "feel" like I am getting worse (more fatigue than before, ascites build-up, etc...).  Not looking forward to FOLFIRI and potential side effects, and I'm concerned because they gave me irinotecan in the TACE procedure on the liver and it didn't seem to have any effect on the liver tumors.  One interesting thing is that my blood counts continue to get better (have always been good but even better now) and at my last treatment all of my liver enzymes were normal.  That is the first time all have been normal in over a year...

On the bright side, I went with some friends to play golf this weekend at Arcadia Bluffs here in Michigan (#13 ramked public course in America) and played fantastic on the front nine with a 1 over par 37.  Struggled a bit coming home and shot 44 for a total of 81 for the 18.  Fatigue started to set in on that back nine...

Tedd

annalexandria's picture
annalexandria
Posts: 2202
Joined: Oct 2011

please keep us posted on that scan.  We're all thinking of you and hoping for better results!  AA

Sundanceh's picture
Sundanceh
Posts: 4282
Joined: Jun 2009

My 4th recurrence is definitely in the liver...highly suspected in the lungs...and there are indications in the lumbar region of the spine.

It seems each recurrence gets progressively worse when it comes back.

I met with a new oncologist today...he specializes in surgical liver oncology....we're leaning towards me doing TACE now, chemo unknown at this time as the plan is being discussed and with another test pending.

I got a chance to talk with him about some of the Hallwang approach....hyperthermia and the DC vaccine etc. 

It was interesting, because he said when they do the before and after scans....that the after always looks good, for sometimes up to 2-years.....and then, there is inevitably a recurrence...and he said that things tend to come back stronger and with multple mets. 

His specialty is liver and he seems (to me) to be up to date on the varying protocols locally in the states, as well as abroad.  Didn't have enough time in the consult to discuss Removab, but from the gist of his conversation, I got the impression that things work for awile and they don't.

Much like with all that we attempt to do...

It was interesting just to be able to tap his opinion on this subject and get some feedback, as we were discussing a part of my case for the liver. And fortunately, TACE is available in the states at the hospital I would be receiving it at. 

Folfiri can be a tough drug....since Irinotecan had no effect with TACE, I'm wondering if they feel the systemic delivery of the Irinotecan through IV will be more effective through this transmission route?

Continued good luck with your plan!

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

My TACE procedure included mitomycin C, irinotecan and avastin delivered directly to the tumor via the arterial blood supply, which is how they do TACE.  Don't see how irinotecan systemically via IV would be any different, but we are trying it and will see what happens.  Quite frankly, I think it is in large part that "standard protocol" is if you do FOLFOX first, you then do FOLFIRI next.  The chemosensitivity testing they did on my circulating tumor cells indicated that irinotecan should work for me, at least until the MDR-1 gene starts kicking in and making my tumors resistant to it.  The chemosensitivity results for irinotecan were not quite as good as for oxalaplatin (70% response versus 80% response), but we will see how it goes...  Best of luck with your TACE procedure if you get it. 

Tedd 

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