In September 2009 I was diagnosed with undifferentiated round cell sarcoma of the uterus (endometrium) for which I underwent a total abdominal hysterectomy with bilateral salpingo-oophorectomy. I had remained in remission until July 2014 when a CT scan revealed that I had a nodule in the base of my left lung (lingula). In September 2014 this was removed via thoracoscopic surgery and was later confirmed to be metastatic sarcoma.
A further nodule on the right lung was monitored which grew from 8mm to 9mm from December 2014 to April 2015. Additionally, a CT scan in April 2015 revealed 2 areas of focal pleural thickening which was considered to be pleural metastases. This pleural metastases was shown to have worsened in June 2015, with added left-sided pleural effusion. It was felt that the disease was not sufficiently developed enough to warrant treatment with chemotherapy at this stage. However, a CT scan in September 2015 had shown significant progression with an increase in the size of the left-sided pleural effusion and also associated increase in the left pleural metastatic disease. There was also an ill-defined soft tissue lesion within the subcutaneous tissue at the left lateral chest wall, which also increased in size likely to represent a subcutaneous metastasis.
In September of 2015 I had the pleural fluid of my left lung drained and began a 6-cycle course of palliative doxorubicin (75 mg/m2, reduced after the first cycle to 60 mg/m2) the following month. The course was stopped after the 5th cycle due to increased concern of a possible cardiac event. This chemotherapy was nevertheless generally effective, with a CT scan in March 2016 showing that the disease was stable.
The disease remained stable until a CT scan in June 2017 showed progression in the left basal pleural mass, and a node in the left hilar (very close to the pulmonary artery and aorta) which was also considered to be a metastases. I agreed to start a course of Trabectedin whilst trying to get on an immunotherapy trial using Olaratumab or Pembrolizumab, but I was deemed not eligible for either trial. A biopsy of the plural metastasis was consistent with a high-grade endometrial stromal sarcoma.
I began my course of Trabectedin in September 2017 (via 24 hour infusion). I was also given palliative radiotherapy (16 Gy in 2 fractions) to control haemoptysis stemming from the pulmonary metastases. The course of Trabectedin ceased after the 2nd cycle due to the contraction of a mycobacterium chelonae infection of my PICC line which required a 4 week course of antibiotics (Clarithromycin and Linezolid). However, between September 2017 and February 2018 the sarcoma had again stabilised in response to the Trabectedin and radiotherapy.
However, a CT scan in May 2018, revealed that the current tumours had begun to grow again and I am soon to begin a course of Trabectedin.
Judging my from case do you think I would be a good candidate for immunotherapy? If so which treatment would you suggest?
Thankyou very much for any assistance you can give me.
Kind regards,
Lorraine
Dear Lorraine,
We're so very sorry to know of your difficult battle. There is much hope with immunotherapy.
If you're looking into immunotherapy, we consolidated all that we've learned about immunotherapy - the underlying science and practical ways to harness the immune system against cancer - in our book. Our book should answer your questions in a very thorough manner, and give you practical steps if you chose to pursue immunotherapy.
If you have questions after reading the book, we'll do our best to answer your questions on the forum.
Wishing you the very best,
Rene and Eddy
Dear Rene and Eddy,
Thank you very much for your response.
Unfortunately my illness has progressed to the point where my doctor has suggested that I suspend any treatment as there is no practical hope of halting the progression of the cancer, and that any further treatment may do more harm than good.
As immunotherapy does not seem viable at this time, did you come across the effectiveness of using cannabis oil during your research on anti-cancer treatments? If so, what do you think of its efficacy?
Many thanks,
Lorraine
Dear Rene and Eddy,
Thank you very much for your reply.
Unfortunately my sarcoma has now progressed to the stage where my doctors believe that further chemotherapy/radiotherapy would do more harm than good, and would be unlikely to halt the progression of my disease. As I am not in a position to receive immunotherapy at the moment, I was wondering whether you had come across the use of cannabis oil as an anti-cancer treatment during your research. If so what do you think of its efficacy?
Many thanks,
Lorraine
I'm sorry to hear that the sarcoma has progressed.
We have not considered cannabis oil during our cancer battle.
In the case where the doctors have no more recommendation, it may be possible to pursue patient-driven immunotherapy clinical trials or off-label immunotherapy with off-label cryoablation. Chapter 16 summarizes our thoughts on this.
When not on any treatment, dietary intervention such as the omega 3/6, along with the ketogenic diet, may be possibilities to pursue (Chapter 15).
Wishing you the very best!