Amy-
From the research I did when I was needing to make my decision, I came to understand that one actually has a slightly better chance of going into remission/cure when you have the combo like you did. My tradeoff was to accept a slightly lower stat for remission (not much lower) by doing chemo only, in exchange for not taking on secondary side effects from the radiation. So don't beat yourself up--plus, they did not give you that option. I am glad you found a doctor you feel so much better about-- that is so important. Denise
I was diagnosed with mixed HL 2a in 2007 and faced a similar decision
I am also a physician, and evaluated the data on the subject -
Ultimately, I decided to take 1 month of radiation in addition to 4 cycles of ABVD for one main reason- mostly because I did not want to look back and wish I had taken the radiation since I knew recurrence rate was slighly lower with this route
1. prognosis after PET remission after 2 cycles is excellent, so this would suggest ABVD only
2. disease free occurrence is 95 vs 88% after 5 years if you take the ABVD + radiation route, this suggest ABVD + involved field radiation
3. what you need to weigh this against is the risk of involved field radiation for secondary malignancies 20 years down the road - the truth is that studies for secondary malignancies were done with mantle radiation, so there is no way to truly compare
4. also consider if you are a woman the risk of breast cancer with radiation (secondary malignancy)
5. also consider if the disease is right sided or left sided - left sided radiation may increase risk of heart disease
L. Christmas-
Thanks for your contribition. Turns out I opted for chemo only and had 6 cycles. I had difficulty with the Bleomycin so that was eliminated for the very last treatment which was on December 1, 2009. I guess time will tell if this was the right decision for me. I sure hope so. My primary node involvement was on the left side of my neck. The docs at the University of Michigan (consultation team) thought that the risks from radiation would be significant enough that they recommended chemo only. Now, I am dealing with a lung problem. Will be getting a bronchoscopy tomorrow to determine if there is some type of infection (maybe fungal) resulting from weakend immune system. If they cannot find what they need, then they want to do a lung biopsy but I am not sure why. Need to find out more. I am hoping not to have to go any further than the bronchoscopy.
Have you had any secondary effets to your treatment? I get pretty fatigued from time to time, which frustrates me. I don't know if that is left over from chemo or if it is related to whatever is happening in my lungs.
Denise
Denise,
I have had no leftover effects. I had Bleomycin toxicity and stopped Bleo after 2 cycles as well. I do not feel short of breath. The fatigue improved about a year after treatment was completed. (wow it seemed forever)
This fall I completed my 1st 5K run, and I'll be trying the broad street run in Philly in the spring(10miles)
I hope all goes well with your lung issue. The bronchoscopy is considered a far less invasive way to evaluate if you have an active issue. It may takes weeks however before fungal culture results return.
Let me know if I can help you.
Anthony
Hi Anthony-
Sooo good to hear that you did not have any after effects from your treatment other than fatigue. It's fantastic that you are fit and strong enough to enter into runs. I have a very close friend in Philly and have been there a number of times. I love the city. I used to live in Delaware and in hindsight realize I should have taken better advantage of the centrality to NY, Philly, DC, Baltimore by visiting those citties more often. I have been working at getting stronger physically also, and have been walking (outside & treadmill) and doing some light weight lifting. This possible infection has set me back a little, but hopefully I can get back on track ASAP. I had the bronchoscopy yesterday and it went very smoothly. Later in the day I felt flu like symptoms and thought I was running a fever but was not. Today I feel better but still drained. Now it is just a matter of waiting for culture results.