I had a 6 hour treatment Wednesday, then 3 hours on Thursday and again 3 hours on Friday. Wednesday was a beast and I was very ill, stayed in the hospital. By Friday all I could do was lay on my bed. Blood tests Monday, another chemo treatment on Wed., then in 2 weeks another round of 3 consecutive days. I have confidence in the German system but there is so much "un-communicated"
Angela-
What's your diagnosis, and what treatment are you receiving?
Ross
Ross,
2nd stage Hodgkin’s Lymphoma… So far, 3 days consecutive days of treatment, 6hours, 3 hours, 3 hours. That was last Wed, thurs, fri. Another “short” treatment this wednesday, then in 2 weeks another 3 consecutive days. two pills for treatment, injections to boost blood, blood tests 3 times each week. The German Doctor seems very good it’s just that I don’t feel I really understand what is going on or how this treatment compares to what is done in the US.
Angela-
It's relatively easy to find out how 'most' US oncologists are treating Hodgkin's lymphoma: The national comprehensive cancer network (NCCN.org) is a collection of 21 cancer centers headed by the National Cancer Institute. They publish standard treatment guidelines for all cancers, including Hodgkin's and NHLs. Of course these are just standards, nobody-- whether a doctor at an NCCN cancer center like Stanford, or a doctor at a community hospital-- nobody has to follow these guidelines, but they generally do. Other organizations publish guidelines as well, including the American Society of Clinical Oncology and Kaiser Permanente. I haven't seen the latter two, but you can access the NCCN's guidelines by going to www.nccn.org. On the right it says "NCCN guidelines - FREE' but you do have to register with the site (which is free). Then you can download in adobe format the guidelines they use for treating Hodgkin's.
That, or you can send me a private message with your email address and I'll send you the Hodgkin's adobe file as an attachment. I don't know what part of Germany you're in, but many consider Germany to be a leader in Hodgkin's treatment. Check out GHSG, they're out of Koln University Hospital and their work has been setting the standards for years.
Ross
Angela:
My husband has Hodgkin's Lymphoma 3B. His chemotheorapy is ABVD which is one of the standard treatment. He receives treatment once every 2 weeks. He has to receive 12 treatments. It requires 6 month.
You may want to take advantage of the internet as suggested by ROSS. We were scare too at the beginning. But the more we understood the disease, treatment, and the side effects, the better we can cope and work with our doctor and nurse to fight the disease.
Right now, my husband had completed his 3rd Chemo for 6 days now. But his hands are swollen and with some rashes and very itchy. He also feel pain in his stomach area. We checked the internet, do not get any helpful information except we should contact our doctor. My husband will go to visit his doctor tomorrow. I am worry. This is his new reaction. I always worry about the damages that chemo may cause.
Angela, I'm pretty sure you're on BEACOPP and not ABVD. Are you taking Prednisone too? I'm starting chemo on Tuesday, and yours sounds like mine. I'm having it done in EU also.
Hello,
Yes, I am on Prednisone also…according to the doctor, it does cause me some problems sleeping at nights but I am resting during the day. 10 more days until the second serues of treatments…
Just need to get to the other end of this and to do it you have to take the first step…
Peace with the treatment
Angela
Angela-
Sorry I'm just getting back to this, but I agree with Hannah, you're most likely on the BEACOPP regimen- it was established by the GHSG several years ago and is a bit more intense than other Hodgkin's regimens.
Ross
Angela - they made me take Prednisone for 2 weeks as a sort of pre-chemo treatment. It's making me put on weight like crazy, but it got me rid of atopic eczema.
Best of luck to you!
Ross - Is BEACOPP used in the US at all? It seems to be the standard here in Europe.
Hannah:
It is used on occasion, for example the guidelines for the National Comprehensive Cancer Network (nccn.org) note that they will use the dose-escalated version of BEACOPP in certain circumstances, but that ABVD and Stanford V are usually considered before BEACOPP.
As for why, I have no idea. ABVD is much older -- it was established in 1975 (http://www.ncbi.nlm.nih.gov/pubmed/54209?dopt=Abstract) while BEACOPP goes back to 1998 (http://www.ncbi.nlm.nih.gov/pubmed/9850026?dopt=Abstract).
BEACOPP may be used more often in Europe because it was established in Germany by one of the most respected hematology groups in the world, the German Hodgkin's Study Group (which I rave about all the time)-- but ABVD was established by Italian researchers, so who knows. I would assume it comes down to results in actual practice -- they've seen them in the US with ABVD, in Europe with BEACOPP.
Looking at the trial data that established these regimens, it looks like ABVD was more successful in earlier HL stages (and progressively less so as the stage went higher), while the BEACOPP trial's patient population was all advanced disease, and age didn't matter, and the complete response rate was super high (92%, meaning 92% of over 900 patients showed no signs of disease after therapy).
Ross