Fw: WOW!! (Announcement Of Sorts)

[Guest guest]

----- Forwarded Message ----From: wro <wro130@...>Eileen <ravensegge@...>Sent: Mon, March 15, 2010 7:13:52 PMSubject: Re: [low dose naltrexone] WOW!! (Announcement Of Sorts)

I am looking forward to feeling better on LDN too!

I was dx in 1999 with crohns, in 2000 with thyroid cancer and 2 years ago with breast cancer...I am tierd of being sick & tierd! I am ready for LDN to work~~~ if it works wonderful, if it doesn't what have I lost?????

I have been on Humira, prednison, chemo, and numerous other drugs,,,,,,, LDN is one that "I" choose! I asked the doctor for it and since I have tried everything, he was more then willing to give it to me, even thugh he is not familiar with it!

He always said that together we have to treat me, that I have to be just as importnt in my treatment as he is.....so he was more then willing to give me a script since I walked in with all of my research!

I am not thinking it is a miracle drug, but how much worse could it be then prednisone???

I am on my 5th day!

doing well, no sleepless nights no vivid dreams....nothing.....no ill feeling side effect! Whats so ever!

gretchen

From: Eileen <ravensegge@...>jaxi <jaxi.schulz@...>Cc: low dose naltrexone Sent: Mon, March 15, 2010 6:57:06 PMSubject: Re: [low dose naltrexone] WOW!! (Announcement Of Sorts)

I'm glad you joined us, Jaxi. Have you gotten your Rx for the LDN yet? My oncologist is with MOHPA, but although he ok'd the Rx, he did not give it. That was from the doctor at the Penny Institute, across the street from Abbott Northwestern. At this point I don't know whether the MOHPA and Piper Breast Center folks will be giving prescriptions, or just funneling patients into the study. I know Dr. P has talked to the doctor who is doing (or has just finished?) a study at the UofM, but I don't know if the U is involved in this study or not. I do not know if it is going to be taking folks from other states, or just local patients. I won't be seeing Dr. P again until June, but I will keep an eye out for any postings or other information if and when it becomes available. And I will ask Dr. P about it again when I see him...The requirements, as far as I can tell, are that the participant must have advanced stage breast

cancer, and that they be on aromatase inhibitors. I don't know how soon the study will start, although I think my doctor is anxious to start soon, as he has a few patients who are having pretty severe side effects from the AI's and he'd like to get them on the study. I wish the best for your friend - she is lucky to have someone like you in her corner!~EileenOn Mar 15, 2010, at 7:37 PM, jaxi wrote:> That is terrific news Eileen. I am a new group member and have mostly> been reading. I also live in Minnesota (Minneapolis) . I have a> friend with breast cancer that metastasized to kidney and most> recently to brain. I might pass this information along to her. I> have another friend who just passed away yesterday (Sunday) after a> many year fight with breast cancer that metastasized to her bones,> wish I had known about this option sooner to share with her - she had> an

amazing drive and desire to live and will be missed.> > Jaxi> > On Mon, Mar 15, 2010 at 6:34 PM, Eileen <ravenseggegmail (DOT) com> wrote:>> I am SO excited!!!>> >> One of the difficult things about having stage IV cancer (and there are many rather unpleasant things about it, of course), has been having to give up on the idea of being able to donate my organs in order to help other people - thus depriving me of one way of making meaning out of what is otherwise a meaningless and awful thing.>> >> But now my Integrative Specialist, Dr. Plotnikoff of the Penny Institute, has given me back a little bit of that meaning.>> >> He was so impressed by the relief from pain and other symptoms after he prescribed the LDN for me that he spent the last

few months gathering up the resources and information. .. and now he, in partnership with Minnesota Oncology & Hematology (the practice in which my oncologist works) and the Piper Breast Center (the center where my breast surgeon practices), is going to be doing a study on LDN in women with metastatic breast cancer!! All because I spent the last year fighting for the prescription, and finally got it... and got relief.>> >> From my POV the study is not perfect - it will be on women who are taking Aromatase Inhibitors for their cancer, and I'm not entirely clear on whether they are looking for relief from side effects of the AI's or whether they are looking for relief from side effects of the cancer itself. And I have some doubts as to whether women on hormonal treatments are the best candidates for a study on LDN, and even whether breast cancer is the best/most responsive cancer to be testing on.>> >> BUT along

with studying for symptom relief (pain, etc), they will also be measuring whether the LDN increases NK cell levels in the study subjects over the period of treatment. So it should have some bearing on LDN as a treatment for other cancers and conditions.>> >> So it's not a perfect study (IMO, of course), but it's a study. And other women who are suffering may get relief - and if the NK arm of the study bears out it may help LDN get studied further for other types of cancer - and all of THAT is a blessed, wonderful thing, something that creates some meaning out of this awful situation of mine. It's a bittersweet thing for me, but the sweet is definitely there!>> >> ~Eileen