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Radiation

together
Posts: 13
Joined: Apr 2003

my son is 25 years old and was diagnoised in Jan 2002, with hodgkins, he was in stage v, after 6 months of ABVD, he was in remission, but then two months later the cancer was back, In march 11, 2003, he indured a stem cell rescue but the cancer was still there, in May 2003 he started 25 treatments of radiation so far he has completed 8. Lately my son seems to have giving up on all hope, he has missed 2 appointments with radiation (his choice), missed appointments with his counselor(his choice), and is drinking and smoking cigerettes. He seems very angry and is self destructing before my eyes. Did any of you go through this? and if so what got you out of it? He seems to be on the fence of life or death, and he seems to have no fight left. What gave you hope? and how did you get it?

mc2001
Posts: 344
Joined: May 2003

Hi together,
I never had that problem, but I do know that there are people that have been there. Contact the local chapter of the Leukemia and Lymphoma Society www.leukemia-lymphoma.org. Contact the Patient Services Manager. Ask him or her to place you in contact with a First Connection Peer Counselor that has been in your situation. Be specific in your description of your son. Ask to speak to a parent that had a child like your son. And ask your son if he would like to talk with someone. It is best to leave it up to the patient instead of demanding or making a request without their permission. Good luck and God Bless.
-Michael

mc2001
Posts: 344
Joined: May 2003

Hello Brethren Blood Cancer People,
My name is Michael, and I am a survivor of ALL - acute lymphoblastic leukemia. It isnt the very same as HD, but many similarities. I was diagnosed at 21 yrs. I am now 29 years old and have been in remission for almost 7 years. In fact, this June 6th will be my 8th anniversary of my diagnosis (this is one anniversary that is hard to forget!!). Anyhoo, I wanted to share a few tips that I learned along the way. Hopefully they will help you, and if you already know them, please pass them on. Oh, by the way, I have a leukemia and lymphoma web site that I designed during my remission. There is information that may help you.
www.geocities.com/leukemia_lymphoma

1) A Dr. told me that HD is one of the most curable cancers today with a cure rate of >90%
2)Be part of your treatment. Ask questions, and be aggressive.
3) Write down the names and phone numbers of your doctors, pharmacists, medicines, and dosages. Keep a list with you or close to the phone.
4) Do not be afraid to have pain management. Educate youself about the myths of addiction as a result of pain medicines used for real cancer pain.
5) Before, during, and shortly after radiation, apply a good Aloe lotion to the areas to be radiated. This process has been proven to greatly minimize the harsh burning side effects of radiation therapy.
6) Ask your Dr. about EMLA anesthetic cream as a preparation before having your subdermal port punctured. Applied one hour before the initial puncture, EMLA greatly minimizes pain and discomfort.
7) If it is possible for you to taste the Heparin flush, and it creates nausea, chewing on gum, or eating a fruit flavored hard candy will hide the heparin taste.
8) If swallowing tablets is a problem, ask your caregiver to crush the tablet into a powder and mix into a milkshake, Ensure, or similar drink. Sometimes mixing a crushed tablet in applesauce does NOT help.

This isnt much, but I hope it helps. Good luck and God Bless.
-Michael
leu_lym@yahoo.com

eric1
Posts: 4
Joined: May 2003

I am going through an angry phase right now. I hate going to doctor's appointments or going to radiation. It's a frustrating time because even if I survive another 40 years after this ABVD treatment then I will have only lived 63 years and that is not enough for me. I have seen a counselor but it didn't do all that much. HE is going to have to find the strength and hope to get through this and there is not that much you can do to help except to be there when HE asks YOU for help. It is hard to accept but I personally believe that this is a personal battle for your son but you are still effected greatly. There is no easy answer....I know what he is feeling. But I am trying to express my anger and it helps a little. I have just tried concentrating on getting better and enjoying free time away from treatment. I have thought about chewing tobacco again and drinking but I just don't want that to bite me in the ass in the future....but from your son's perspective he may not see a future so smoking/drinking has no consequences. The hope and strength your son needs can only come with the news that the cancer is back in remission. I hope that he hears that news soon.

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