Hello Diana,

I had Hodgkin's disease. This does not make me an expert on all aspects of the disease and it's treatment. I will answer some of your questions directly and let my experience suggest others. I am posting my response to alt.support.cancer so that others can react to my answers and point out mistakes if there are any,

Staging:
Expect a Lymph Angiogram, CAT Scan, bone marrow biopsy and perhaps a "Bone Scan" (autoradiograph). The big dividing line in Hodgkin's is between stages I or II and III or IV. Stages I and II describe lesions which exist only above the diaphragm and can be treated by radiation alone. Stages III and IV are found below the diaphragm (and above) and are treated by chemo alone or chemo with radiation, but not radiation alone.

If the above tests indicate stage I or II the patient must undergo a "Laparotomy" to be absolutely sure that the cancer is confined to the "upper mantle" radiation field. If there is undetected (untreated) cancer below the diaphragm the radiation treatment will fail. The laparotomy is a major surgery involving an incision from about the pubic bone to near the diaphragm which will allow careful inspection of the abdominal lymph nodes, a spleenectomy and liver biopsy. Not much fun, but necessary to guarantee the success of the radiation.

Radiation:
Upper Mantle Radiation or Upper mantle plus spleen is used to treat Stage I or II. Has the advantage of being done in about 22 sessions over one month (longer if they do the spleen). My experience with radiation was that it is not painful and seemed like a vacation (it was given during a one month break in my chemo).

The "Upper Mantle" includes the entire neck, shoulders, armpits aortic arch and mediastinum. About week three you can expect to lose the hair in those areas. This includes the back of your head along an imaginary line between the tops of your ears. The hair comes back. I lost my sense of taste for about three weeks and my mouth went dry for even longer because the salivary glands are exposed. About four months after treatment I experienced "L'hermite's sign" which is an electric buzz you get when you look down. It was actually kind of fun. I was looking for work at the time and got a consulting agreement with a Japanese company. Every time I returned a bow, I got the buzz. It disappeared in stages over the next three months. Some drawbacks of radiation are: the risk of damage to the heart, and risk of thyroid problems including thyroid cancer.

I (in theory) will be spared the heart problems...I'll explain later.

Chemo:
Chemo has the advantage of treating the entire body. The standard Chemo is still "MOPP" which is a four agent combination. When chemo is used, a laparotomy is not required. It is not unusual to be on the MOPP for 12 to 18 months. I believe that the formula is CR (complete remission) plus four months. I was not treated with MOPP, I got VBM which is in clinical trials. I will let others describe MOPP to you. MOPPs long-term problems can include sterility and secondary cancers (some of the MOPP agents are carcinogenic).

Statistics and Prognosis:
You may have already had the very odd experience of being congratulated for having Hodgkin's because "it is the most treatable". Gee, Thanks. The truth is that a complete remission is almost always obtained. and the stats for cures are also very high. Be very careful about reading the stats though because they are ALWAYS behind the times and look a lot worse than they really are. I made the mistake of reading the stats on Hodgkin's from my brother-in-law's old medical school text from the late 60's. Don't do it. Even when the same treatments are described you need to know that the dosage amounts and schedules have been fine tuned for 20+ years now and the results are different.

Clinical Trials:
Many patients are offered the chance to enter clinical trials, others should ASK. I was treated under Stanford University's GIII protocol for Hodgkin's. My actual treatment was at Kaiser. By random selection I was placed in the experimental group. I had Stage IIA Hodgkin's. My radiation treatment was modified to exclude the heart. In addition, I had a new Chemo combination which doesn't use the carcinogenic components in MOPP. The combination was VBM (Vinblastine, Bleomycin, Methotrexate) for a total of 6 cycles. The whole program took seven months; The idea is to prove that VBM + Radiation can have the same success rate as radiation or MOPP while avoiding their possible complications. Ask what's available, you can always say no, and if you give one a try, you can always quit. I was able to work the entire time I was in treatment. I just have to hope that the VBM took care of the untreated area near the heart, and that the potential liver/lung damage does not materialize.

Support Groups:
I never ever thought of myself as a support group type. I changed my mind. The ISOLATION and issues that cancer brings into your life need to be worked on. You and your Husband will have completely different experiences (although parallel) and will benefit from talking with others who are in your place. If you have kids, they will need help. My kids had none. My 14 year old daughter is in drug rehab now and my 12 year son spent 2 weeks in a Psychiatric hospital to treat his depression. Better to avoid this if you can. You are in shock now and your minds are busy burying a lot of fear, anger and frustration in an effort to keep things together. I really feel that the 18 months I spent with a support group is one of the most important things I have ever done. Your husband will benefit from talking to other cancer patients and you from others who are supporting a loved one. My wife and I attended groups at the wellness community which charges nothing for its services (not even hints for donations), it is staffed by qualified licensed therapists who are donating their time.

Books, Doctors and "Friendly Advice":
You will get a lot of unsolicited information in these areas.

The best doctor for you is the one you can communicate with. Don't settle and don't make important decisions until you are satisfied with the information you have. With Hodgkin's you have time. List your questions before you go in and take notes (or tape record) your answers. Be warned.

Regarding choice of doctors: I remember hearing one person complain about how awful a particular radiologist was, it took me three weeks of discussion to figure out that it was my radiologist he was talking about, someone who I found to be wonderful. I will say that Hematology + Oncology specialists usually manage Hodgkin's case referrals to radiologists etc...

You will never manage to read all of the books (invariably with conflicting ideas) that well meaning people will give you. You will get tired and confused reading all of them or feel guilty that you aren't doing enough if you don't. Get some Bernie Segal tapes, turn the lights down and relax!

Friendly Advice: Ignore those stories about Aunt this and Uncle that and what an awful time they had (re-read section on stats) Just thank them for their concern and move on.

Best Wishes

Bill
Ex-Hodgkin's '93

Write to Bill! wilds@netcom.com

©1996 Diana L.E.G. Hinnrichs