CancerCompass message board discussion started by Peyton01 on 12/13/2005 http://www.cancercompass.com/message-board/message/all,3733,0.htm Sat, 22 Nov 2008 00:00:00 GMT Sat, 22 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ my 20 year old son had a node removed on Nov. 18th 05. We found out on Dec. 6th he has HD. He is so scared and so are we. What can we expect from our oncology appointment tomorrow? What about treatments? I don't like waiting. Thank you so much for any response. Peyton01 Tue, 13 Dec 2005 00:00:00 GMT From: Message: Hi, I am in remission from Hodgkins nodular scelrosing type, stage 2 neck and chest, male age thirty. I was diagnosed in sept of 04 and finished ABVD and radition in march of 05. I am expecting you have begun your staging. This is the process by which you determine the extent of the disease. You will most likely do extensive blood tests a bone marrow test( go for the sedation) and a PET scan( radioactive glucose is gobbled up by the cancer and read by the machine.) Then you will recieve a suggested treatment. Don't hesitate to right me back. ask more questions etc. God bless, Dan Survive Wed, 14 Dec 2005 00:00:00 GMT HD is a surviveable cancer. It could be a long road with difficult chemo/radiation, but it does have a pretty good prognosis. Come back here and let us know what you found out at the appointment. Oncrx Fri, 16 Dec 2005 00:00:00 GMT We go for a CT scan on Monday morning. We go Thursday Dec. 22nd for the results. The doctor is calling this nodular lymphocyte predominant. Radiation for 6 weeks-5 days a week. Could someone tell me what experiences that have had with radiation. THANK YOU! Peyton01 Fri, 16 Dec 2005 00:00:00 GMT I was diagnosed in april 2004 with Hodgkins stage 2. In May I started chemo for 4-6 months. My first treatment completely took away my golf ball size lump in my neck. I was so amazed. I had such good luck with it that they decided 4 months was enough and then 20 radiation treatments 5 days a week. Radiation was nothing. It took longer to position me than the 15 seconds on each side that I recieved. Then I was done. I had to wear a fitted mask that they molded on me which I hated, but time went fast. I started on a tuesday. My last week of radiation that wednesday I started to feel a little tired. No problem just wasn't myself. The weekend came and by Monday I was fine 2 treatments left and I was finished. Your getting a little longer radiation than I did so rest more that is the one thing that does happen I was so close to the end before I got tired where you have an extra week. Don't let it bother you I know several people who had longer treatment and a week after they were done they were out and going. I had one lady taking 35 treatments for breast cancer and she had no trouble. Several scans and blood work and so far so good. Its been a year and I feel great. I did have a bone marrow done and I was scared and it was no problem. My doctor did a really great job on it. No pain and very quick. Even if you get told later you need chemo don't panic. The iv pinch is the worst. chemo is boring as hell. I had no reactions from the ABDV regime they set me up for. I did lose most not all of my hair. But when it came back it sure came in nice. I always had thin but nice hair but after it came in it is nice and thick. I love it. The main thing they told me is if you have to get cancer you got the best one. We have about a 95% CURE rate. Go into this situation with an ATTITUDE don't think for one minute it will control your life. You control it. be positive, and stay determined to win and you will. best of luck write me anytime louise Louise Sun, 01 Jan 2006 00:00:00 GMT Thank you for your reponse. We meet with the radiation oncologist on Thursday of this week. They changed the number of treatments from 30 treatments to 20. Praise the Lord! Did you have a PET scan? They have told us we will probably have to have one since my son has some enlarged nodes in his groin. They did the Ct and it showed nothing but have said probably a PET SCAN will be better. Thank you for letting me know about the tiredness. I hope and pray he will be okay with the treatments. Peyton01 Sun, 01 Jan 2006 00:00:00 GMT Hello. Yes I had a pet scan. They are similar to a CT. You get an IV they put the drug in and then remove the IV. Simple You wait about 40 minutes and then they put you on the table and wrap the sheet real tight so you don't move. My pet scan was done in a trailer that goes from hospital to hospital so it was small and the table was narrow. Alot of places have a pet scan right in the hospital. Some are open others are just like a CT scan with the hole you get moved through. With getting the neck scanned you will be close to the top of machine its weird but there is no problem your face is just close to the top but you can't hit anything so don't worry. From what I understand it is the best way for them to determine exactly what you need. Do you need chemo also? I had nodes other than my neck enlarged and they had to be sure about them too. Once you have a problem it is not unusual for nodes to enlarge even though they are not infected. i know its rough but don't worry just hang in there. Any questions just ask me it was such a help just to talk to someone who's been there. Don't hesitate to ask look forward to a rough start for the new year and concentrate on getting done to enjoy the holidays coming in 2006. louise Louise Sun, 01 Jan 2006 00:00:00 GMT