Hello Wizzard,
I am saddened to hear about your ordeal. NHL is something that I am familiar with. I may be offering some advice here, please do not be offended, these are just suggestions and off the cuff advice. This info stuff I am passing on to you is just for your information and covers alot more than what you are dealing with.
I wish you the best, it sounds like you are in good hands!!!!!
""The reason I was going to post in Sixpacs thread is Try not to read too many personal experiences as everyones reaction is not the same and people recover at very different rates. Try to mantain a positive attitude.""
WARNING, personal experience below, stop reading at this point.... I am feeling odd about posting this because of your statement. I think the info below is positive, so I'll go ahead. I hope you don't mind.
There are many, many varieties of NHL. Try to educate yourself as much as possible about exactly what type you are dealing with. "Well, on monday I got the subtype back as Non-Hodgkins large cell Lymphoma ani-plastic and a whole lot more stuff after that and at Stage 3b." That is a good start, now you should (if you are so inclined) to find out more about the "stuff". I suggest that you empower yourself with information about what you are dealing with.
Time to pack a "war bag". Get a file, get a copy of all of your medical doctor's visits, all of your blood tests, biopsy reports, and start a list of all of the doctor's that you are dealing with. Staple their business cards to a piece of paper, note who they work with because sometimes you may have to deal with one of their partners. Buy a small tape recorder and extra tapes. Take it with you and record every time u talk to a Dr. Sure ask, they most likely won't mind. Sometimes the visits are so intense, it's difficult to remember everything they say. I took ferocious notes and still had questions. Invest in a cell phone. (I didn't and it sure would have come in very handy!) Keep telephone numbers of everyone who can help you in the book. Ya never know when you may need help picking up the kids from school or something.
Begin looking into clinical trials. Take printouts of the trials and ask your docs to look at them. Our docs hadn't heard of many that I found. They then appeared as options for us to explore even though some were very radical.
Be prepared for insurance heck. I see that you are in Canada, so you may have a different fight here. Enlist the aid of everyone you can to help in this area. If a procedure you think is good is not approved, find out what you can do to make it work.
One treatment that very much helped was a steroid. It literally took him from the bed and he went outside and got a shovel to dig in the dirt a little.
Here's the PDQ for patients. (The one for doctor's I am sure you can locate if you wish. This document outlines all of the recommended protocal for this disease in technical terms, very interesting) The one for patients is toned down but still very informative!
Find out info on interferon, monoclonial antibody treatment, blood typing for BMT, and any and all other types of treatments, just for options and more information!
There is a Lymphoma Society that may be able to provide you with additional resources and information.
PDQ for NHL,
http://www.oncolink.com/templates/ty...ss=288&id=6625
My prayers and very best wishes to you and your family!!!!!!
(please accept my apology if I offended you with my comments, I tried to keep most of the personal stuff out. I totally agree with your statement about other peoples experiences. When I went through this, I got to hear about every cancer that everyone had in their entire family and people just wanted to talk about their uncle or friend of a friend or great grandpop or so and so and that truly is tiresome and not very helpful. I really did try to stay out of that category.)
) and 27th for another CTscan to see how things are progressing and if the length of my treatments is to be altered (I'm supposed to go for 6 rounds)
Linear Mode
