3B Hodgkins

Dear everyone,

hello. My sister Alexia, 23 was diagnosed last February after having the disease for about a year until we found out what it was. She was diagnosed as stage 3B and has finished her first cycle of chemotherapy (12 sessions once every 15 days) on the 16th of August. Three days ago we found out that she still has 2 of her lymph nodes swollen one at almost normal level under her collarbone and the other one under her belly fairly big still but very smaller compared to the 1st scan. It was a great shock to us to see that she hasnt recovered and she will be needing 4 more sessions during the next 2 months, she is starting again on tuesday. she is then scheduled for a PET scan, and if the results are still not good she will be doing a marrow transplant they will take her own blood "fix it" and put it back in.

I am just worried because she is having her treatment here in Greece and i have lived for 8 years abroad, i have just returned and i am a bit concerned that Greek Hospitals are possibly slightly behind. they told me that every therapy done abroad is done in Greece too, there would be no point to take her abroad and we would be spending a fortune for no reason so she did the ABVD chemo and will continue with it. the doctors are trying to avoid radiation, but from what i ve seen in this website and others it seems common abroad especially for stage 3 patients.

It seems from your stories that patients have CAT scans quite often. we only had 3 of them one b4 she started chemo one in the middle of chemo after the 6th and one 20 days after her last chemo..was it really late? She is starting her second round of chemo 27 days after her last one. Also, from your website i realised that patients and their carers know everything about the drugs and their sideeffects..We are a bit in the dark when it comes to sideffects..

Any opinions would be really appreciated.

Thank you

iLiana

In March of 2004 I was told I had Hodgkins stage 2. That was determined by a neck biopsy. I did have a needle biopsy first but it wasn't positive. My first visit to the cancer doctor involved a bone marrow test. That was ok and I was set up for 4-6 months of chemo treatments, 2 per month starting in june. My first treatment totally got rid of a golf ball size lump in my neck. Things went well and I only had chemo 4 months. Then 20 radiation treatments 5 days a week. I had 2 cat scans in the beginning. One to see what nodes were effected in neck and chest. Another done by the cancer doctor to make sure pelvis and abdomen nodes were clear After one month of chemo I had breathing tests as well as a muga scan which was to see if I had any damage done to my heart from chemo. I had a pet scan before radiation. I also had a scan to determine where to radiate and got marked this was just a scan no IV. After finishing radiation I was scanned 3 months later. I would see both doctors every 3 months. I had another scan at 3 more months. Now I have a scan next week which is 6 months later. I had the ABDV chemo. My first treatment lowered my white cell count and I had to be put on Neulasta a shot given 24 hrs after each treatment. Works wonderful. I took compazine for nausea the first couple treatments just incase I got sick but after cutting back each time by the third treatment I realized I didn't need it. It was hard to travel the day after chemo for the shot so I had it sent home and got it given to me by family members.Chemo made me tired and the drive to the doctors was 34 miles one way. So it was really nice to stay home. After the first shot my blood stayed good. but I took a shot after each treatment. I had chemo Thursdays, a shot Friday no problem but Saturday and Sunday I felt ok but I just wandered around the house not knowing what I wanted to do. I wasn't comfortable anywhere. I had a hard time with the heat. One weekend I threw a cover over the sliding board in the pool to stay out of the sun and that worked real good. Hair loss was funny. I started to lose it after the 4th or 5th treatment just alot of thinning I never totally went bald. It did give a few bald spots in the back and top of my head but I still had enough to cover. I looked tired and lost 20 lbs. Radiation took off all the hair from my ear lobes down. From the end of October 2004 till now my hair is starting to touch my shoulders. I know I am lucky as my side effects seemed small to compare with others but I had a " get it over and get better attitude" from day one. I know in my heart attitude is alot of your success. You get weary going for treatments but you'll find people to talk with along the way that will help you cope. It does get better. Just hang in there. Any questions feel free to ask me. I check the web site often take care Louise