Hi Ladies! Have any of you researched Immuno Therapies? I recently have been introduced to a group of people that have had great success with a Dr. Kubler in Munich. None with ovarian cancer per se, but many other types.
I have contacted him to obtain more information, but wondering if anyone has heard of him or his practice.
Thank you and Happy New Year!
Jodi
I am on an Immunotherapy phase 2 trial of Pembrolizumab at UCH .
This is after five plus lots of chemo over five and a half years ....
Serous , High grade ....so far , so good , much slower than chemo so all a bit wait and see , but so far tumours have reduced , are stable , but some are also growing !!
CA 125 going down too ....so borrowed time , if nothing else .
Here's to a 2017 full of positives for all of us .xxx
Thank you for your response! I am Stage IIIc clear cell and just started second line treatment. While I know there is no 'cure', the thought of slowing it down with stem cell therapy rather than chemo drugs with side effects is appealing.
Happy New Year!
Jodi
Hi Jodi, interesting question I don't know but like you would like to find out more. I am sure someone on here will be able to give you the load down. Take care Happy New Year! Cindyxx
hi Jodi, welcome to the site, I dont have any experience of immunotherapy but I would also be interested to see how this works. Happy New year to you hope its a good one
I have also researched but have not found any for ovarian. Keep me posted and good luck
I'm also on an immunotherapy trial at UCLH; mine is trialling the drug avelumab and the trial is callled Javelin 200 Ovarian. There are many centres in the UK and across the world offering this trial. I started the trial in November after recurring within three months from successful first line therapy. I am due a scan on 3rd January and should have results on 10th as to whether there has been any improvement, so fingers crossed as there have been little if any side effects!
Hi January, good luck on your results on the 10th. Do keep us up dated & hope this treatment works for you. Take care Cindyxx
How are you doing January? It would be great to hear how you are doing xxx
Thanks for checking. I had my second scan since starting the trial last Tuesday and should get the results this Tuesday coming. I feel fine so I'm hoping the scan will be fine too!
Please do let me know how you get on and I will be sending loads of positive vibes your way. Xxx
There are trials at Mount Vernon which when/should I recurr again will be my next step. Happy New Year.
Claire xx
This girl seems to be having immunotherapy, but I am not sure where? You could contact her through this page?
Jodi,
I also have clear cell, stage 3c. I have been researching options beyond conventional chemos for this disease. I think immunotherapy, offered in clinical trials, has not proved to be successful for ovarian cancer. Response rate is about 10-15%, there are side effects and patients with disease progression...
I copied and pasted this discussion that Lars posted on another forum:
"Furthermore, there is also a doctor in Vienna, Austria, who has a IL-2 treatment protocol that he offers patients. A case study based on this protocol was published at ASCO this year:
meetinglibrary.asco.org/con...
I don’t know if they have been successful in treating ovarian cancer. It looks interesting and I keep this clinic in Vienna in mind.
Please share with us if you find anything promising even if it is considered non standard treatment and done only in certain countries.
Tanya
Thank you for the informationTanya! The people I have been introduced to that have undergone the stem cell therapy with success have had different types of cancer with great success. (breast, lung, liver and pancreatic) All stage III or IV.
I have been able to correspond via email with Dr. Kubler this past weekend. In a nutshell he said a cure is likely not possible with this type of cancer, but 'retardation' is. He is recommending I complete my second line treatment of Avastin/Doxil and contact him again to determine if he thinks it would be worth while going to Munich for testing. I have 5 treatments left which should be completed by mid-May.
I should have mentioned in my original post what Dr. Kubler's method is. On a very, very simple level.....this is how I understand it: His goal is to activate an immune response to 'slow the wheels of cancer'. He extracts blood which would contain good cells as well as cancer cells. He takes the cancer cells and creates a vaccine. He takes the good cells and harvests them (turning 1 million into 2 billion). He then reintroduces both into your body with the theory the vaccine chaperones the good cells to the tumor stem cells to kill or contain them from multiplying.
I will keep everyone posted as I get any new information. I guess for now I continue on the chemo path and continue to be thankful for feeling as good as I do!!
Thank you so much!
Jodi
Jodi,
It sounds more like dendritic cell vaccines. I know they do a lot of alternative therapies for cancer in Germany. It is very expensive though. If money is not an issue I would go ahead and try it. Cancer vaccines are only available through clinical trials, here, in US. Otherwise it cost something like 30+ or 50+ thousands for a course here or in Germany. I have researched it, and is not impressed with the results.
I am considering to go to Germany at some point of time for alternative treatment. I am researching information on Salinomycin now that is supposed to affect cancer stem cells. I am also interested in mistletoe therapy.
Please keep us posted. I really hope that something will work for you and for everybody who has this dreadful disease.
Tanya
My GynOnc hasn't recommended any clinical trials for my situation yet. I have also been to MD Anderson and they don't believe the immunotherapies are viable yet for ovarian cancer.....or at least clear cell.
I would love to hear what you have found in your research. I will certainly pass on any information I run across.
Thank you!!
Jodi
Hi Jodi,
My doctor at Massachusetts General Hospital here in the US said immunotherapy for OC is not yet available. I asked him so long ago that I don't remember exactly what he said about it, but I think they are working on it. Of course, it would have to go through trials and approval, etc. I don't expect it to be available any time soon. That's not to say that it isn't available in other countries, though.
I hope the Doctor in Munich has success with OC therapy. Best of luck......JudyV
Thank you for the reply Judy! I am in the US as well and have found the same information.
Jodi,
Look up these links:
ClinicalTrials.gov Identifier:
NCT02764333 - only if you have a measurable disease.
ncbi.nlm.nih.gov/pmc/articl...
Have you heard about that radiation could be very effective for clear cell? There are at least 3 women with stage 3 clear cell on Inspire who had full abdominal/pelvic radiation and have been NED 4+ years. I do not know all the details. One lady did not respond to frontline but after radiation she has been NED for 5+ years.
Did you have tumor profiling?
I had a Caris report and it showed some targeted therapy and Parp Inh. could work for me.
Tanya
I did discuss radiation with my GynOnc. He didn't believe it would be beneficial since I have no 'visable' tumors, only the ascites is presenting. He said they could do radiation and damage other organs along the way which would open a whole new can of worms.
May I ask when you had surgery and what type of treatments you have had so far?
Jodi
Jodi,
I deviated from the standard treatment a few times - but it is a long story.
I have had 3 cycles of chemo (carbo/taxol) and interval debulking surgery. After the 4th cycle I developed a port infection. I am seeing my oncologist tomorrow to decide when the port is to be removed. I also started having pain in my left side. I don't know when I finish frontline and if it will work for me.
Right now I am fantasizing to refuse the antibiotics after the port is out. It is like a natural immunotherapy, a version of a Coley's toxins. While fighting the infection maybe my immune system awakes to fight the cancer. It is a fantasy. I am crazy enough to try it but nobody will support me anyway.
Tanya
Just a little photo of our first born, my hair growth and the scarf.
Hormone therapy!
Olaparib still working
Just a quick note
