Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 Dear , May I ask if you had problems with your pancreas before going on the medications for your Liver Problems or if the Immunosuppressants are the cause of your pancreatitis. The reason I am curious is that I have been on the Prednisone and Imuran and now have been having what I think might be some problems with my pancreas??? Who knows? Thanks & Happy Holidays! Take Care, Shirlee (Wa State) Re: [LiverSupport- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2004 Report Share Posted April 30, 2004 Hi I haven't kept my links up to date but if you do a search there are lot of sites which describe mastoidectomy. Unfortunatley the language they use is sometimes a bit too technical. Here's one that does cover all the aspects: http://www.bcm.tmc.edu/oto/otologyprimer/comsurg/Mastoidectomy.html Another site which I've posted once before has various pages with photographs of ctomas and mastoid surgeries. I'd advise anyone not comfortable with gruesome images to give them a miss. http://www.ghorayeb.com/Cholesteatoma.html I have been two times to my doctor very worried for having an infection in the ear due to all pulsating. But every time I have been looked at he simply can't see anything strange with my ear but are instead very surprised over how well my ear looks and how good I hear. I think it that's how it goes. I think Tom once mentioned that nerves get damaged during surgery and that it can produce odd sensations, aches and pains for ever more. It's sometimes thought that the pulsating sound is a kind of tinnitus that stems from hearing blood rushing through an artery (carotid artery) and that it doesn't necessarily mean that anything's wrong. Tinnitus and ear pain can even stem from sources outside the ear - a common cause is jaw trouble (TMJ). It's easy to see how that happens - stick your finger in your mastoidectomy ear and then move move your jaw up and down and form side to side - did you notice how much the movement of your jaw causes the inside of your ear to move? Phil ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.638 / Virus Database: 409 - Release Date: 21/03/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2009 Report Share Posted May 11, 2009 Hi, , Sorry my info on things which have helped me is so long in coming! I actually have had it written for a week. What is holding me up is a couple of new things I am trying. I thought I might hold off till I am more sure how those are working for me. If you (or anyone here) would rather I send it right away, tho, I can do that. Just let me know. (I know I did tell a couple new people here to check it for further info when I submitted it to the group. Don't want to frustrate anyone here. ) Diane From: furstc0404 <furstchotmail (DOT) com> Subject: Re: Electrified anyone? groups (DOT) com Date: Saturday, 9 May, 2009, 9:16 PM Hi Diane, we are on the same " wavelength " lol. From all I read, it points to calcium ion channel. Now, I am reading about biodynamic devices which may counteract the ES/EMS. Have you read similar? Even when touch my aloe vera plant, lol, I get an electric shock!! Have you read research concerning ion calcium channels in general. My EMS is also very very sensitive to earth magnetism, in the sense, that any slight changes, such as sunset and sunrise affects me, and other phenomena, anyone else experience this? > > > > > Recently, I started developing, tingling and burning skin. On the face, > > > eyelids, arms and hands. Anyone else suffers from this? > > > > I have certainly had burning skin on my face. > > > > > The secondary issue, is that I started getting electric shocks from > > > water, clothes, cutlery, and other things I touch. This is happening > > > despite wearing thick rubber flip flops. > > > > " Despite " ? I would think that thick rubber flip flops would actually > > contribute to shocks. Do you get shocks with bare feet or cotton > > socks? > > > > > Is it possible if taking vits and supps, and other alternative remedies > > > such as herbs, and powders, to exacerbate those symptoms too? > > > > Yes, my burning face gets worse with anything that raises glutathione > > levels, including Vitamin D. Also toxin mobilizers and chelators > > can make these symptoms worse (e.g. chlorella) > > > > Marc > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2009 Report Share Posted July 6, 2009 Hi I am repeating this message as I don't think it was generally received Begin forwarded message: > From: Leigh <slleigh@...> > Date: 5 July 2009 16:47:33 BDT > > Subject: Re: [ ] Hi Im new > > Hi > > I guess I live not too far from you as I am in HA8. I was dx with > CML 4+ years ago and am post-BMT. > Where are you being treated? I am a patient at the Royal Free > Hospital in Hampstead and recommend them. > > CML and the treatment are difficult; but not impossible. I, too, > was very tired when I was on glivec. It is very normal to feel > tired but sometimes not so easy to cope with. > Please email directly if I can help. > slleigh@.... > > regards > > SUSAN LEIGH > > > On 5 Jul 2009, at 16:27, lisadutton1981 wrote: > >> >> >> --- >> Thanks for the welcome. We are in Herts in UK, just outside of >> London. We are under a hemotoligist at the hospital but dont think >> his a CML specialist although I know he has some other CML >> patients. He takes it after breakfast and drinks loads. Dont feel >> sick very often but the tireness is a real pain. >> We are so glad that we are living in a time when its easier to >> treat, but I know Darren is upset knowing drugs for life but I >> think its still early days. >> >> >> In , ROBERTA DOYLE <rcd1929@...> wrote: >> > >> > Hi , welcome, as they say, to the club no one wants to >> belong to!! >> > If you do not have a CML expert, I would suggest that you get >> one. You didn't say where you live, but there are many great >> doctors available that specialize in CML. Some times it takes a >> while to adapt to Gleevec, it took me 2 months before I even felt >> half way human. Gleevec should be taken with a substantial meal, >> or it may cause nausea. Also it is not good to lie down directly >> after taking it, that too can cause nausea. And have Darren dring >> lots of water. I am no longer on this drug, I am one of the less >> fortunate in that it did not work for me, therefore have been on >> several drugs since. >> > This is really a great time to have CML, there are so many new >> options that were not available to us old timers. I have had it >> for 14 years, when the life expectancy was about 5 years. Today >> there is no limit to how long you can live, and live a good >> productive life. Darren may take some time to adjust to Gleevec, >> and being fatigued is part of life. >> > Let us know where you are from, I'm sure someone will know who >> would be the best doctor for your husband in your area, and good >> luck. Bobby >> > >> > a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 >> - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 >> - Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR >> in 10 months #840 - Zavie's Zero Club 09/2006 - out of CCR >> 04/29/08 - XL228 Trial/ U.of Michigan 06/02/08 - CCR ( in 4 weeks) >> > 02/13/09 - XL trial ended due to side effects >> > 04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz >> > >> > >> > >> > >> > From: lisadutton1981 <minx101@...> >> > Subject: [ ] Hi Im new >> > >> > Date: Sunday, July 5, 2009, 5:56 AM >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > Found a link to this site on Macmillian board. My name is >> Im 27. Im married to Darren who is 32 and we have 2 lovely little >> girls. Darren was dx with CML just over 3 months ago after a blood >> test for a wheat alergy. He appears to be responsing to Gilevec >> but havent had second lot of BCR results yet, so not 100% sure >> just yet. >> > >> > His doing well and is back to work but finds himself getting >> very tired and often has to go back to bed during the day. He also >> has weird numb type pains in his side a ribs. His liver hasnt >> taken to the drugs too well and also waiting to see how much >> damage was done to the spleen because it was so big it was pushing >> on stomach and bowels before dx. He has also dropped 8lb in the >> last few weeks, so of course we are worried. >> > >> > His consultant is a bit off sometimes and we arent sure wheather >> to continue with him or request to be under a CML specialist. >> > >> > Anyway that our story so far. Hope your well and hoping to chat >> to you all soon. >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
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