CancerCompass message board discussion started by Hodgkins Mom on 2/13/2005 http://www.cancercompass.com/message-board/message/all,1563,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My 24 yr. old son has recently been diagnosed with 3B Hodgkin's. Prior to diagnosis he was attending college, working for a ranch, and caring for his own farm in rural Oklahoma. Because we live a great distance from MD Anderson Cancer Treatment in Houston and he will be taking treatment there, he will not be able to finish this semester of college. He is very disappointed that his entire life is becoming wrapped up in fighting and curing ths disease. I am looking to communicate with Hodgkin's survivors who have undergone treatment to find out what they went through during and after treatment. Hodgkins Mom Sun, 13 Feb 2005 00:00:00 GMT Shelly, My name is Vicki. I am 36 years old. Two weeks after my high school graduation I was diagnosed with stage 4B Hodgkins. I had been a class officer and was very excited about attending the University of New Hampshire that fall. I was devastated when the fall came and I was so sick I couldn't go. All of my friends went away to college, but I couldn't. I had my spleen removed, 7 treatments of MOPP/ABV chemotherapy, three months of radiation and then I was done one year later. I have now been in remission since 1988. They told me I might not have children, but I have a beautiful family with one boy (age 10) and one girl (age 14). It was a frightening and difficult journey, and no one could guarantee the outcome for us. It's a very scary place to be! Especially so young. I am now a full time nursing student 2 months away from graduation - can you believe it took me this long to finally get my degree - and a nursing instructor said to me today that if she had to choose a type of cancer to get, it would be Hodgkin's because of the high cure rate. I know it's not a comfort to you right now, I'VE BEEN WHERE YOU ARE!! However, I'm living proof! I would be happy to talk to keep in touch with you. Be sure to visit the American Cancer Society's web site. It's a great reference. I am part of the Cancer Survivor's Network and I have done two on-line interviews, show #67 (adult survivors of teen leukemia/lymphoma) and show #85 (adult survivors of teen cancer). If you or your son are interested in hearing them. Please feel free to call on me! Incidentally, I was born in Corpus Christi, and a good friend of mine from Houston is coming to visit this week. It seems like a weird omen! I hope this message gives you hope! God Bless! Newmarket-nurse Mon, 14 Feb 2005 00:00:00 GMT Vicki: I will share your response with my son today. We have "the big appt." with his doctor @ MD Anderson this morning @ 11:00. I will also give him your email address and as time goes along I know that he will contact you. God bless you! Shelly Hodgkins Mom Tue, 15 Feb 2005 00:00:00 GMT Hi. I have a nephew (notice that I say "have", not "had") who was diagnosed with stage 3b Hodgekin's disease. He was twenty years old at the time. At that time, Hodgekin's disease was just turning the corner toward becomming a very curable disease. He did not do MOPP therapy, but a different (slightly newer) chemotherapy that had fewer side effects (for instance, he never lost his hair). He turned forty-five years of age this past August. He has now lived more than half of his life (so far) after his diagnosis and treatment. He is married and the adoptive father of a young son (he opted not to do sperm banking). His doctor was Dr. Steele in Kokomo, Indiana. If you didn't know that my nephew had been so ill, you would never suspect it. He has never had a recurrance of the Hodgekin's disease, either. Hang in there. Explore treatment options. Keep a positive outlook. Investigate the option of sperm banking. Continue to embrace life (before, during and after treatment) and a healthy, balanced lifestyle, and all will be well. Cynthia H. Tue, 15 Feb 2005 00:00:00 GMT I know this is kind of late, this message was first posted a good 10 days ago. Your son may be able to finish the semester after all. Set up his chemo appointments for Fridays. He will be fine to go to school by monday. As long as his Profesors know whats going on, they shoud cut him a break on missing class to go get treatment. A lot of People continue to work right through treatments. Discuss this with his doctor. Good luck.(I was treated in 2002 for HD 2b.) Carolmarie Sat, 26 Feb 2005 00:00:00 GMT Thank you for the reply. Right now my son has been staged 3B Nodularsclerosis Hodgkins. He has finished his 4th ABVD Chemo. and he goes back to MD Anderson on 4-5-05 for retesting and staging. They are watching enlarged lymphs in his abdomen and also his spleen. If there is cancer there he will be 4B. We go back to MD Anderson for test results and restaging on 4-12-05. So far, the chemo has made him sick but nothing he can't handle. He continues to work part-time as a ranch hand and he has a farm with cattle, horses, goats, dogs and cats that he tends. Please let me know more about your experience. Again, I do appreciate your response. Shelly Hodgkins Mom Fri, 01 Apr 2005 00:00:00 GMT Shelly, Well I was 22 when I finally got diagnosed. I was 21 when I started the symptoms. At the time of my diagnosis I was stated as having stage 2A Nodular sclerosing. I take it that since your son has the B he has the nigtht sweats and some other signs of B stages in Hodgkins. Well, I had a staging laporotomy done because it was close as to whether or not mine would be stage 2 or 3 and the treatments would vary for it. My spleen was then removed. I was fortunate enough to be stage 2 at that time and I have an excellent DR. The protocol for my treatment was 6 weeks of radiation therapy. It made me incredibly ill. I was radiated in what is called the upper mantile field. I got sick everyday and lost 40 lbs. I was in remission and a year later had a relapse. This time it was all over in lower part of my body. So I endured 7 months of ABVD chemotherapy. I did lose my hair. I was in college when I was first diagnosed and working a job. I took a leave from school. The Dr. wrote me a letter to the school so I could be re-enrolled when I was ready and receive my financial aid back. I continued to work even throught the chemo. It made me feel yucky for about a day or two after taking it. However, I took my treatments every two weeks. It lowered my t-cells alot and white count was awful. I opted to take shots everyday so my white count would come back up and I could continue the recommended treatment schedule. That was in 1998. My last chemo treatment was in 1999. I have been cancer fee eversince. Nodular sclerosing is a type of Hodgkin's with one of the best success rates. My doctor told me it was definately the type to have when having Hodgkin's. I did get pneumonia while I was taking my chemo therapy, and I survived. I know that are differences between type A and type B cancers with Hodgkins. But I think your son should never give up fighting. I wanted to face it head on. I read everything I could about the disease. And I refused to let it take me. Your son has cancer, but it doesn't have to have him. I found many medical books in my local library and at the Barnes and Noble store. I love that place, you can just sit and read. the internet does have some information. The Merck MAnual will be somewhat informative too. If you haven't already done so, I would recommend contacting your local Leukemia and Lymphoma Society. They do have a site on the internet. As well as the American Cancer Society. And your son, if he hasn't already, can apply for disability benefits with the social security administration and state department too. Here it is called medicaid. These programs will help your son pay his medical bills and supplement some income. Don't let the SSI turn you down. Because at first they will. But your son does have a life threatening illness and he does qualify. Everything in his life will forever be changed. But it can be a change for the good. I know it is hard to face something so scary as cancer. My mother wasin deep denial for a long time about it. And the greatest thing about ABVD chemo, is even after all that I went through, I had a baby two years ago. He is my miracle, but the ABVD is suppose to be one that has a less chance of losing fertility. I know you say he goes to Houston for treatment. Where are you in Oklahoma again. I am in Kansas City and we have some excellent cancer centers here. Also there is a wonderful cancer center in Dallas. Once you are diagnosed with cancer, you do not need much of a referral to go anywhere you want treatment. And if you do need the referral, your doctor truely will be more than happy to give it to you. Tell your son though to make sure he does get immunized for pneumonia, the flu every year and a meningitis vaccination and he will need the hepatitis series if he hasn't already had them. For now, I would work on the pneumonia. He'll need that about every 4-5 years. The flu shot yearly. He is now in the high risk category and probably will be for the rest of his life. I am, and thank goodness I can get shot every year. Ther is so much to tell, but this is a lot to soak in at the moment I am sure. Feel free to write back and I will write you back too. Good Luck. Elizabeth Elizabeth y Fri, 01 Apr 2005 00:00:00 GMT Can anyone let me know about SSI for Hodgkins. Please let me know. Lconedaddy Wed, 08 Jun 2005 00:00:00 GMT my 15 year old daughter was diagnosed with hodkins stage 3b. She is being aggressively treated at sloan kettering in manhattan ny.She claims the treatment and side effects are worse than the disease. she needs 8 rounds of chemo. the first 4 rounds are beacopp and if she goes into early remission then she will do chopp abvd if not 4 more rounds of beacopp. her drs said this was the best type of cancer to have. It has been difficult to watch her suffer and take care of 3 younger children,This has affected our whole family.She has been admitted in to the hospital 3 times already. 2 times for a fever with a neutropenic count and the other times with the shingles. she already has has 4 blood transfusions and we are only on round 3.I would love to share my story with others and would love to hear from any one who is willing to share their nightmare, she has been frustrated and depressed and concerned about failing the 10th grade.She has been getting home schooled but she cannot keep to a schedule because of all the hospitalizations. I would love to hear from anyone.please contact me. Crzyjyne Tue, 18 Oct 2005 00:00:00 GMT Jayne: My son took his 16th chemo. treatment on 9-27-05. He retested for restaging on 10-11-05 and he is now cancer free. He doesn't have to go back to MD Anderson until January for retesting. He will then be retested every 3 mos. for 2 yrs. then every 6 mos. for 2 yrs. then every year for the rest of his life. His first 13 chemo treatments were ABVD administered with a decadron steroid that he took during treatment and for 2 days following treatment. The last 3 treatments did not have the bleomyacin in it because it was doing lung damage and they say he has taken hs lifetime dose of bleomyacin. Throughout treatment his counts stayed pretty good (nothing over-the-top)so he was able to take all 16 treatments consecutively. It sounds like your daughter has some complications that we didn't have to face, I'm sorry. What subtype of Hodgkins does your daughter have? My son had nodular sclerocing, FDG (fast developing growth). I don't have much advise but I know how hard it is to watch your child suffer. Before my son was diagnosed I watched him suffer so. He had drenching night sweats, lost 28 lbs., had a terrible cough. It took almost a year for him to be diagnosed - doctors kept saying he had pneumonia. After his diagnisis, we hurried to MD Anderson and their lymphoma team is wonderful. He felt better after chemo treatment # 1. I do have to leave for the evening but let's keep up the communicado. I will also keep your daughter in my prayers and my best of thoughts. Shelly Hodgkins Mom Tue, 18 Oct 2005 00:00:00 GMT