Alternative Medicine

TreeHugger

I have been undergoing acupuncture, homeopathy and Chinese medicine for leiomyosarcoma. My LMS originated in my uterus and spread to my left lung...both tumors were surgically removed...Then they found a small tumor in my right lung (undetermined nature)....I turned to Alternative medicine and the tumor is shrinking, but I understand from TereB that this can happen with LMS and the tumor can grow again. I would be interested to hear how many of us have successfully treated LMS with alternative medicine.

TereB

I'm sorry I didn't explain better. I do have metastasis in my lungs and once they disappeared with no treatment and later they grew back again. They are still there.

My tumors are different from anybody else's, mine is a rare cancer and according to my doctors, I am rare among the rare. Sometimes my tumors shrink with no treatment, other times they go dormant, no growth at all, other times they grow slowly and occasionally, some become aggressive and grow fast.

I do not use alternative medicine.

TreeHugger

TereB said:

I'm sorry I didn't explain better. I do have metastasis in my lungs and once they disappeared with no treatment and later they grew back again. They are still there.

My tumors are different from anybody else's, mine is a rare cancer and according to my doctors, I am rare among the rare. Sometimes my tumors shrink with no treatment, other times they go dormant, no growth at all, other times they grow slowly and occasionally, some become aggressive and grow fast.

I do not use alternative medicine.

TereB...What is the name of your cancer...Has anyone tried to analyze why the tumors react as they do? Have you considered that your lifestyle (diet, exercise, mind-set) differs from time to time? Might this co-incide with the changes in your tumors?

TereB

TreeHugger said:

TereB...What is the name of your cancer...Has anyone tried to analyze why the tumors react as they do? Have you considered that your lifestyle (diet, exercise, mind-set) differs from time to time? Might this co-incide with the changes in your tumors?

Primary is a glomus jugulare tumor in the head. After so many metastases, it is now called malignant paraganglioma.

Nobody knows why my tumors behave the way they do and I have great doctors. There are no answers. My oncologist said if I ever found out why they shrink or go dormant with no treatment I would get the Nobel prize. My ENT said I should be in the Guiness Book of Records. For a long time I thought it could happen to anybody but apparently it only happens to me.

I wish I knew the answer, not just for me to do more of whatever it is, but also for the other people with tumors.

I don't know the answer but perhaps it has to do with my attitude, my mind and my deep faith. I don't eat fast food, try to eat healthy foods. Psichotherapy helped me a lot even though I didn't exactly go because of my tumors but the therapist helped a lot at the beginning when I started to have metastases. I am not good at exercising, have the intention to do it but always find something better to do. I used to walk a lot but stopped after my dog died.

I have great faith in God and the Virgin Mary and I ask them to give me strength to go through whatever comes up and also asked for time to raise my kids who were very little when I was first diagnosed.

I also try not to worry or think about the tumors but I do get a little nervous when it is time for tests. When I am in radiation treatment, I concentrate on resting, eating or whatever, anything that helps me heal and do not dwell on the bad side effects.

I refused to give in to cancer and decided to have a life and enjoy it, even if there are things I cannot do. I try not to worry about the little stuff anymore. I laugh a lot and do things I enjoy.

I have noticed that when I am calm, not under stress, relaxed, not depressed and feel good in general, my tumors go dormant.

If I am under stress, some of the tumors hurt, maybe my muscles tense, I don't know, and if the stress lasts a long time, the tumors wake up. There is no medical or scientific explanation for this. I make an effort to remain calm and relaxed, just in case that's what works.

I wish I had an answer that would help but I don't.

All the best,
TereB

Felixthecat

Here's some info on hormone status. If you don't know the hormone status of your tumours they can do a biopsy and check it. If you continue to have problems you could see an oncologist and get a hormone antagonist. Tamoxifen is an estrogen antagonist and Mifepristone is a progesterone antagonist but Mifepristone is only available via the US FMF's Compassionate Use Program:

Their website link is:
http://feminist.org/rrights/compassionateuse.asp

2004: Estrogen and progesterone receptor expression in uterine and extrauterine leiomyosarcomas: an immunohistochemical study.
http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&uid=15536333&cmd=showdetailview&indexed=google
• The authors have noted anecdotal cases of extrauterine leiomyosarcomas (LMS) with estrogen receptor (ER) and progester-one receptor (PR) immunoreactivity. However, there are few studies that have compared ER and PR immunoexpression in LMS of uterine and extrauterine origin. The authors obtained a representative formalin-fixed, paraffin-embedded tissue block from cases of uterine LMS (n = 15) and extrauterine LMS (n = 16) from the archives of the Cleveland Clinic Foundation and performed immunohistochemical staining for ER and PR. Staining was evaluated by 2 observers in a semiquantitative manner using the following scale: 0, no nuclear staining; 1+, 1 to 25% of nuclei stained; 2+, 26 to 50% of nuclei stained; 3+, 51 to 75% of nuclei stained; 4+, 76 to 100% of nuclei stained. The majority of uterine LMS stained for ER (13 of 15, 87%), PR (12 of 15, 80%), or both ER and PR (12 of 15, 80%), with most cases showing 3+ or 4+ positive staining. For the extrauterine LMS cases, staining for ER was seen in 4 of 16 cases (25%), staining for PR was observed in 2 of 16 cases (13%), and staining for both ER and PR was seen in 2 of 16 cases (13%). One extrauterine LMS showed 4+ coexpression of ER and PR, but the remaining extrauterine cases showed only 1+ ER and/or PR immunoreactivity. These data suggest that most uterine LMS coexpress ER and PR, and most extrauterine LMS do not stain for these antigens. However, a subset of extrauterine LMS are ER and/or PR immunoreactive. This raises the possibility that hormonal manipulation may be beneficial in the treatment of these therapeutically recalcitrant tumors.
PMID: 15536333 [PubMed - indexed for MEDLINE]