Hello,
My sister (23 yrs old) was diagnosed with a rare form of cancer called clear cell sarcoma this past October, they found a significant retroperitoneal tumor in her lower back. She had two immunotherapy sessions before they realized that it had attacked her heart. This is a perfect time to mention that she was also born with Tetralogy of Fallot which she had surgery for at 10 months old, everything went well.
So once the immunotherapy affected her heart, they immediately stopped treatment to focus on her heart. Her heart function had increased with medication. Now a few months later after her scheduled CT scan we have found out that the tumor has grown and metastasized. They found new tumors behind her eyes, in her leg, her uterine wall, neck, a few other places I can't think of. It's pushing on multiple organs affecting her kidney function and pancreas (she has pancreatitis because of it). Her oncologist has basically told us that she doesn't think any treatments will benefit her. My family is desperate.
So my questions are mainly regarding fenbendazole.
Is this something we should try?
Does it interact with other drugs? (as you can imagine she is on a whole list of different medications for pain, heart, disgestive help, etc.)
I read Joe Tippens blog, and he supplemented his fenbendazole treatment with vitamin E, however my sister also has a DVT so she is on blood thinners, I am aware that vitamin E interacts badly with that. How important is the vitamin E in this treatment?
Would it help if I included a list of the medications she is on?
Are there any other treatments we should look into?
I appreciate any help, tips, anything that might help her
Thank you all in advance,
JTurkey
Very sorry to hear about your sister's condition, JTurkey.
In my opion Vitamin E is the least important component of Joe Tippens fenbendazole combination. In fact, Vitamin E sometimes can stimulate cancer cell growth.
Daniel has written a very good summary on Fenbendazole in cancer treatment:
https://www.cancertreatmentsresearch.com/fenbendazole/
sunitinib
https://www.ncbi.nlm.nih.gov/pubmed/20093352
sorafenib
https://www.ncbi.nlm.nih.gov/pubmed/22274882
Best,
Johan
Hi JTurkey
Sorry to hear.
I live in Istanbul too. What kind of immunotherapy was done? Which hospital her treatment was carried in?
Unfortunately there is no Sarcoma center in Turkey and there is no agreement between European Cancer Organizations and Ministry of Health, so no experience exchange is done currently.
There are few integrative oncology (that should go try beyond standard clinical practice and approved treatment protocols) specialists in Turkey, but unfortunately i can't confirm their credibility due to lack of information i have.
Have you seen this post on Sarcoma case from Daniel:
https://www.cancertreatmentsresearch.com/case-report-stage-iv-sarcoma-good-news-from-jg/
The http://sarcomahelp.org/clear-cell-sarcoma.html says that targeted therapy can be an option.
You may contact anticancerfund.org so they can advise you on (possibly best conservative clinical practice) treatment options.
There are plenty of Sarcoma Centers in Europe but i am not sure whether they go beyond standard therapy. In USA you may find more options on targeted therapy. Unfortunately, cost will be high in either case.
Kind Regards
Asaf
Hello,
My sister (23 yrs old) was diagnosed with a rare form of cancer called clear cell sarcoma this past October, they found a significant retroperitoneal tumor in her lower back. She had two immunotherapy sessions before they realized that it had attacked her heart. This is a perfect time to mention that she was also born with Tetralogy of Fallot which she had surgery for at 10 months old, everything went well.
So once the immunotherapy affected her heart, they immediately stopped treatment to focus on her heart. Her heart function had increased with medication. Now a few months later after her scheduled CT scan we have found out that the tumor has grown and metastasized. They found new tumors behind her eyes, in her leg, her uterine wall, neck, a few other places I can't think of. It's pushing on multiple organs affecting her kidney function and pancreas (she has pancreatitis because of it). Her oncologist has basically told us that she doesn't think any treatments will benefit her. My family is desperate.
So my questions are mainly regarding fenbendazole.
Is this something we should try?
Does it interact with other drugs? (as you can imagine she is on a whole list of different medications for pain, heart, disgestive help, etc.)
I read Joe Tippens blog, and he supplemented his fenbendazole treatment with vitamin E, however my sister also has a DVT so she is on blood thinners, I am aware that vitamin E interacts badly with that. How important is the vitamin E in this treatment?
Would it help if I included a list of the medications she is on?Are there any other treatments we should look into?
I appreciate any help, tips, anything that might help her
Thank you all in advance,
JTurkey
Hi,
I am so sorry to hear about these challenges. In general, I do not expect Fenbendazole would have much interaction with most drugs. However, this is a drug used in animals so not much can actually be stated about the interactions. But to have a feeling on that, we can look at Mebendazole which is a similar drug used in humans.
When I think of Sarcomas, the first thing that comes to mind is angiogenesis inhibitors and fermentation inhibitors. Thamlidomide is such an angio inhibitor that sometimes was effective in various types of sarcoma:
https://ascopubs.org/doi/abs/10.1200/jco.2007.25.18_suppl.20535
https://www.journalmc.org/index.php/JMC/article/view/1199/732
Bepridil could be relevant for Sarcomas https://pubmed.ncbi.nlm.nih.gov/30816547-novel-drug-candidate-for-the-treatment-of-several-softtissue-sarcoma-histologic-subtypes-a-computational-method-using-survivalassociated-gene-signatures-for-drug-repurposing/
radiotherapy and PD1 blockade https://clinicalsarcomaresearch.biomedcentral.com/articles/10.1186/s13569-017-0079-1
Kind regards,
Daniel
