Just a request.

[walter327]

Well, tad of a set back, possibly. Doc told me to call him if I began falling. So, twice in the last week I got a feeling like a boat pitching hard to its side, and down I went. I'm not really worried about it, considering my meds practically make up a four course meal. He said to call, though. I followed instructions. Probably hear something back next week. If anything, he'll push up the date of my next MRI.Wish you guys guys could see the plans I have for our yard. I'm really excited about the end result.

[walter327]

Okay! The "Boat-in-a-Hurricane" feeling went away, and I've managed to stay on my feet. Doc said don't worry about it unless it continues.I've been working on getting information out about ECD, again. I have several people w/ local organizations helping me as far as speaking engagements and newspaper articles.Hey! Could be my 15 minutes, ey?

[sheringo]

Dear Walter,our thoughts and prays are with you my friend.Drop us aline anytime you want to chat.Sometimes you just need to vent!RegardsDomingo & ShereenSheringo

[walter327]

Thanks my friend. Greatly appreciated.Good news. I actually have my first speaking engagement on Aug 28. It's to educate folks about ECD, but is also aimed at giving hope to those who, or have a loved one who have gotten a frightening diagnosis. I've got alot of work to do. But, it'll be well worth it.

[walter327]

Coupla days ago I got a second phone call from another organization that would like for me to do an oral presentation. Man, I hope it just keeps on growing.

[robbylane]

Walter... You have my concern and full support. If ever you need a friend to talk to (who has seen and been through a lot), feel free to PM me. I will always have time for you, Guaranteed!!! Robby Lane

[walter327]

Thanks, Robby.I've, obviously, found a bunch of support in here. I've finally started working more regularly on a book and got some help making my presentation more interesting, too. I think being determined is actually beginning to pay off By the by, this summary of our latest ECD chat is very informative. I thought I'd "hang it up" for perusal.Summary of ECD Global Alliance chat held on Saturday 8th August 2009:1. One member dropped in briefly to the chat to let others know that they have two speaking engagements in the next couple of months, which they hope will help in raising awareness of ECD. 2. One patient has just finished chemotherapy and is not yet on any new medication. Another patient will shortly finish chemotherapy and is due to start interferon. 3. Management of leg pain was discussed; one patient used Tylenol, one lortab, another Aleve. One patient finds that massage and cold packs helps ease leg pain. 4. A member who is due to start interferon soon asked for comments. One patient who has been treated with interferon for the last 18 months said they felt no worse but no better. Another patient who has had interferon for the last 14 months felt there had been a dramatic improvement. Most people do their own injections as this is more convenient than having to go to the doctor’s office. In terms of side effects, one patient had suffered flu like symptoms in the early days, these had been effectively managed with Tylenol. These symptoms only occurred rarely now.5. Another patient described fevers and chills in the early evening.6.One patient taking Gleevec felt that the side effects from the drug were decreasing. 7. Pericardial effusion was discussed. A patient who had suffered from shortness of breath due to pericardial effusion had a pericardial window which had relieved inflammation and fluid build up; this in turn improved the breathing. ECD cells were found in the pericardium as a result of this operation. 8. One patient described how they had had three pericardial windows.9. A patient had suffered from fluid build up in the peritoneal cavity. A shunt had been installed; this had not worked as the fluid had plugged the shunt. Alternative medications had eventually dealt with the problem, until then the fluid required draining every 6-8 weeks.10. A question was raised about weight loss and ECD. Three patients find it easy to put on weight but extremely difficult to lose it! Some patients find it is difficult to exercise, maybe due to lack of stamina or leg pain. It was also suggested that ECD and/or ECD drugs may play a part. Several patients feel that prednisone was a factor in their weight gain. One patient on the chat had lost a significant amount of weight recently.11. A patient described serious complications (large fluid gain) which arose when scar tissue surrounded a port-a-cath.The involvement w/ the one patients pericardium concerned me. This stuff intereres w/ the function of whatever organ they become involved with. Hope Interferon helps them, and quickly.

[walter327]

Visited my Oncologist yesterday. Very encouraging session. They said that I'm doing "Very" well. My Fentanyl doseage was also reduced from 25 mcg per 72 hrs to 12.5 . I'm determined to be off that some day.I'm scheduled for my next MRI in November.

[walter327]

Oh, snafu ! I spent the afternoon going to three pharmacies, before and after a dental appt., trying to locate that 12.5 mcg pain patch. Finally, at the last one, they tell me there's no such thing as a 12.5. they do make a 12 . So, I had to call the doc when I got home, tell them of the mistake and begin waiting on a new prescrip to be mailed to me (Can't fax a prescrip for Fentanyl). Then I can go back to the pharmacy to wait on it to get filled >.Geez!! I think of the time a little COMMUNICATION would've saved me .

[walter327]

Ah!! The pharmacists screwed up. It is a 12.5 mcg patch. Turns out they didn't seem to want to order the new patch. SHEESH!!!