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POLYCYSTIC LIVER DISEASE PLD SUPPORT for liver cysts is now at http://groups.google.com/group/polycysticliverdisease
The email for this group is polycysticliverdisease@googlegroups.com
I can sign you up directly if you wish. Let me know if you want to receive email directly in your mail account or if you wish to read and respond to messages online.
For the first time ever, there are clinical trials underway for liver cysts using octreotide in the USA, Netherlands, and Italy. The USA 2 year trial will complete in April 2010. The USA octreotide clinical trial has been extended an additional 2 more years. The one in the Netherlands is completed and a paper has been published outlining an average of 5% liver cyst reduction. To read more try: http://www.pkdiet.com/pages/pld/pldoctreotide.htm
To read more about liver cysts http://www.pkdiet.com/pages/pld
Warmly, Diane Happy New Year All, This is a message sent from MULTIPLY. I am trying it out to see how it goes. I am hoping all is well. So far so good for me. Bridget has agreed to help with the migration of the group to AIMOO. I am hopeful that we can all continue to receive email posts in our email boxes if we desire. I didn't clean last night so that I would keep all the good luck within the house. My Dad laughed and called me superstitious. I said anything to keep from having to clean is great for me!
Warmly, Diane The reason the following article is so very interesting is that many breast cancers have their growth stimulated by hormone receptors. This is similar to liver cysts that also have hormone receptors on their surface.
For your information this is an interesting article about some lotions contain estrogens.
http://www.medpagetoday.com/MeetingCoverage/SABCS/12153
"Laboratory analyses identified a half-dozen different products containing measurable levels of estriol and estrone, Adrienne C. Olson, Pharm.D., of Breastlink in Rancho Palos Verdes, Calif., told attendees at the San Antonio Breast Cancer Symposium.
None of the products listed the estrogenic hormones among its ingredients. "
I think the message might be to avoid many creams and lotions, trying instead to use oils on wet skin. I wash with grapeseed oil and rinse off with baking soda or if I particularly wish to cleanse some toxins away, I will mix olive oil with bentonite clay and add a tablespoon of tupelo honey to make a paste. Wash with this and rinse with a half a lemon wrapped in cheese cloth, then additional baking soda if my skin is too slick. Otherwise, especially in the winter when my skin gets dry, I will use a bit of olive or grapeseed oil directly on the skin and just rinse with water.
~Diane Hi Diane and all members !
It is a pleasure to write and communicate in this Group
I would like to know where it is going to migrate the Group
There are several possibilities , like Multiply, Yuku, etc.
Lets me some comments about the migration please !
Conchi is waiting for a possible liver transplant for the next year
Thanks you Diane,
I wish you happy New Year 2009 !!!!
Fernando & Conchi Let us hold out the hope together that this next year will bring astonishing effective treatments for PLD. I am hoping.
Happy holidays.
Love
Diane Elli thank you so much for getting in touch and sharing your experiences. It is quite frightening at first to here you have these cysts growing at who knows what rate into such an important organ. I went for the results of my MRI by myself and therefore neither friends nor family know what is really meant by 'multi liver cysts' as thats what I was first diagnosed with, so like myself they have looked up simple cysts and think they're very common and nothing to worry about and of course not wishing to worry them or to sound like I'm feeling sorry for myself I haven't really got any support apart from one friend whome I have shared a little of my concerns.
It's great to hear you that your cysts after aspiration have not grown back to their original size and that you sound to be managing both
liver and kidney cysts well.
And yes I will most definitely stay in touch with this support group as you point out they are the experts through their own experiences and I have already gained far more knowledge than I was given by the medical profession.
Again many thanks for helpful words.
Kind regards
April
Hello, I have been a visitor for while and am very glad to have found this site. I have both Liver and Kidney cysts, from liter size on my left Kidney and, last MRI, showed the group of cysts in and on my Liver from tennis ball size to peanut size. The largest Livet cyst is about tennis ball size and seem to have blood in it. I have had many days of real discomfort just under my rib cage and am constantly bloated. The surgeon said he could, but didn't recomend, remove the largest one. I don't want surgery but for 'last resort'. I do want to Thank All of you for the information and knoledge you all are willing to share. I have found relief and much less anxiety with 'our' affliction. Del, Oregon, USA Hi all,
Approximately a year and a half ago I started to notice pain in my right side which was causing me to wake during the night. As I'm sure we all do just put it down to aches and pains of getting older and thought it would just go away....but of course didn't so made an appointment to have blood tests for liver function etc at well woman clinic (by the way I am now 47 years old). These came back fine and therefore did nothing until July this year when the pain was becoming worse and not just at night. After an ultrasound scan which revealed 'assumed simple liver cysts' the largest being 5.5cm abutting my diaphram I underwent an MRI scan which showed more that 2 dozen of varying sizes which seemed to be throughout the entire liver. I asked the consultant if I should change my diet but was told to carry on eating as normal as it makes no difference. He advised me not to have cysts aspirated as they would refil within 6 months and the best option would to be to wait as long as possible until they pain became too much and then operate to remove as many as possible but this would be the start of many operations propbably every couple of years! I did ask if they could rupture and was told no but they can very rarely bleed into themselves but if this occured would be painful and would need to contact him but otherwise go home continue as normal and he'll see me in a years time unless things became worse!
As I knew very little about liver cysts I didn't ask all the questions I now have like 'DO I HAVE PLD? What are the odds of my daughters having it (they are 20 and 16).
I'm very confused and the pain is getting worse and although I am not eating as much as normal I am gaining weight and inches, and am getting very little sleep.
I would really appreciate any advice as no-one I know has every heard of 'liver cysts' even my own GP didn't know anything about them.
Kind regards
April from Oxford, England
Well I went ahead and on 10/29 had surgery to remove my left polycystic kidney and then the liver surgeon removed the left tip of my liver. He started to just drain the cysts but little good liver left made removal the best choice. I was in the hospital for 9days and am home now. The incision is healing nice and my 5 year old kidney transplant is working well. My question is I am having a lot of stomach pain and bloating. Is this normal? I do feel better than before but do not feel good yet how long for recovery and what things do I need to watch out for? I have quit coffee but do not eat much trying to avoid pain. Bob HI Everyone,
I just read the discussion following Nancy's report of her burst liver cyst. (I'm sorry to hear you had such awful pain, Nancy.) I just replied to that so I'm hoping some of you might read my reply describing the kind of pain I've been having. It seems similar to what some of you have described in that discussion.
In my reply I just posted a moment ago, I forgot to ask, how do you know your liver cyst is bleeding?? Does that mean I should get an MRI to find out?
Also, should I be seeing a liver specialist instead of my general doc (would they know any more about PLD necessarily?)
I basically want to find out what's causing my sudden pain lately when everything had been just fine for quit awhile. I woke up with it a week ago and continue to be in pain. My abdomen is very distended, I have either diahrrea or constipation, with trouble eating and bad gas. The pain started when I woke up a week ago. It was very sharp and very tender and painful to the touch. I still I can't sleep on my left side without terrible, sharp pain (the left side of my liver is totally cystic, with some large ones.)
Any advice? Should I assume this is a bleeding liver cyst or should I go to the ER? I don't have a liver doc right now. If it's a bleeding liver cyst, how can I find that out, where does the blood go, and when does it stop bleeding??
I realize I have a lot of questions here! Thanks so much. I"m sure glad you are all out there!
Karen in Boise I have not experienced the indigestion previously mentioned in this forum, but do at times have what I think is referred to as "sour stomach". Recently I had this for almost a week. Nothing seemed to help, tums, mild food, no food, etc. . I was wondering if the ole PLD liver is responsible for this feeling? Or could it have been a bug of somekind? Terri |
