Improved UPSC Outcome with Treatment of Mast Cell Activation Syndrome

Will1971

I want to share this case study - Improved Metastatic Uterine Papillary Serous Cancer Outcome with Treatment of Mast Cell Activation Syndrome.  You can read the study at this link - http://imaging.ubmmedica.com/all/editorial/cancernetwork/pdfs/2014-02-afrin.pdf

My mother was diagnosed with stage IIIC2 UPSC in June of 2014.  She had surgery with twelve lymph nodes removed and then went to Johns Hopkins for a second opinion on treatment.  She had six rounds of carboplatin and paclitaxel and then elected to not have radiation beyond a few brachytherapy treatments.  She did not have any wide area radiation treatments.

Her CA-125 number dropped to around 10 for a while but eventually started creeping up.  Then after about ten months of no-evidence-of-disease she had a CT scan and small tumors were found in her lungs.  She started chemotherapy again and had three rounds of Doxil which did not work well – the tumors were about the same size.  Then she had Avastin for a few months which lowered her CA-125 number but did not shrink the tumors.  Her doctor was unwilling to continue Avastin.  She went to Duke University for another opinion and a doctor there said carboplatin as a single agent was the best treatment given her history of treatment.  Tests on her cancer showed it was HER2 positive but was not hormone sensitive, so hormone therapy would not likely help.

After much thought she decided she did not want to go through any more chemotherapy.  I and the rest of her family supported her decision.  Her primary care doctor set up hospice and a nurse started visiting her at home once a week.  Around this same time, I asked her to start taking the two different antihistamines plus aspirin described in the case study.  The only changes I suggested was to take half an adult dose of aspirin each day instead of a whole dose and to also take something called fucoidan which can be bought online.  I had found a study that showed fucoidan can help reduce the stomach irritation caused by aspirin.  The study on fucoidan was done with mice, not humans.

None of us expected the antihistamine-aspirin-fucoidan regimen to make much difference, but we felt it was worth a chance.  Time has passed and she’s now been without conventional treatment for eleven months.  She feels pretty good considering what she’s been through and we’re extremely grateful for the past eleven months and we’re of course hoping for many more months.

I really can’t say the regimen is helping.  The reason I thought it was worth trying is my mother has suffered from allergies her whole life.  I’m fairly certain she does not have mast cell activation syndrome.  It’s quite possible she’s done well because I talk with her every day and we keep planning visits.  She saw her grandchildren at Christmas and she’s coming to visit her grandchildren toward the end of March.  Most important is I’m not a doctor and she has not had any scans to check the progress of her cancer.  We’re just living each day and enjoying the time we have.

It took me a long time to write this note because I worry about giving people false hope.  My hunch is the regimen is helping, but it’s just a hunch.  Again, I’m not a doctor.  I’m just someone that has read everything I can about my mother’s cancer and wanted to try this one regimen at the end of her treatment because the woman in the case study did surprising well while taking it.  I felt I needed to share this story because I would have wanted to read about it.

Nellasing

Hi Will1971

Thank you for posting the study and your thoughts as well as your mother's story.  She is very blessed to have you researching and helping as well as the support.  Wonderful that you are gathering as a family and that you are planning future fun things and most importantly LIVING EACH DAY!  That is all the time any of us is promised- just this day and it is one of the "blessings" that come from time being called into question, we finally see how very precious this day is.  Blessings as you continue to support your mom.  Please keep us posted.  (((HUGS)))

Kvdyson

Thank you for sharing your

Thank you for sharing your experience with us. Your mother must be a wonderful person to raise such a loving and thoughtful child. Please give her our best wishes for a wonderful visit with her grandchildren! Kim

NoTimeForCancer

Will, how lucky your mother

Will, how lucky your mother is to have a son who cares so much.  

I understand you think it could give someone false hopes, but I can tell you I have not see this article from 2014.  It is interesting and I thank you for posting.  Everyone is different and if it gives you more time with your mother than that is fantastic. 

For all the ladies I have copied and pasted the link below so it will open in a new window.  

http://imaging.ubmmedica.com/all/editorial/cancernetwork/pdfs/2014-02-afrin.pdf

Will1971

Thank you

Thank you all for your kind thoughts.  My mother had a great visit with her grandchildren and with me and my wife.  She passed the one-year mark without any conventional treatment while she was visiting.  As a matter of fact, her doctor said she wouldn't be here a year after treatment.  Not only is she here but she's doing great except for neuropathy from prior taxol.  We're hoping for another visit in July.  I'll write again about how she's doing then.

NoTimeForCancer

Will1971 said:

Thank you

Thank you all for your kind thoughts.  My mother had a great visit with her grandchildren and with me and my wife.  She passed the one-year mark without any conventional treatment while she was visiting.  As a matter of fact, her doctor said she wouldn't be here a year after treatment.  Not only is she here but she's doing great except for neuropathy from prior taxol.  We're hoping for another visit in July.  I'll write again about how she's doing then.

Will, thank you for letting

Will, thank you for letting us know she is doing.  We look forward to hearing from you in July.  

Will1971

Mom still doing well

We had our visit with my mother and she's still doing well.  She's had some reflux which might be related to the antihistamines, but it doesn't seem to be too much of a problem.  We believe the antihistamine regimen is helping.  She's now been without any conventional treatment for 13 months.  She's coming to our house for a visit toward the end of September so I'll write another update then.  I'm wondering if anyone else has tried this regimen.  So far I only know of the case study and my mother's experience.