Hodgkin's 3A

Well, they gave my husband a tentative diagnosis of 3A today. (We're still waiting for the bone marrow biopsy results) Anyone else staged this same way? What has your experience been thus far?

He's currently facing 6 months of chemo and begins that tomorrow morning at 10:30.

Dear Gregswife,

There is almost always some relief when a patient finaly knows "what" they have, and "how it is staged." I suppose I was quite close to your husband's situation, since I was diagnosed with HL at Stage III-A about a year ago, but I had a relatively indolent (slow-moving) form of Non-Classic.

I was diagnosed secondary to cardiac (heart) pain, which we discovered was due to pressure from a node against the heart. My first diagnostic CT was very scary, since the MD, who was not an oncologist, and who was just out of med school, basically said that I was "covered up" with disease. She walked me next door to a general surgeon, who looked at my CT via e-mail, and he said, "This is lymphomia. It is all over the place."

This worrisome report he confirmed with biopsy, since cancer cannot definitively be diagnosed, except with biopsy. There were some "dots" inside my lungs, so they thought that I was Stage IV initially, but the "dots" were later determined to be scar tissue.

I am currently in "full remission" from the disease. I am 54 now (53 at the time). The younger, the better, and your husband is obviously younger than I am. His chances statistically for beating this and remaining disease-free are quite high, but your doc has most likely shared the specific numbers with you. I suffered serious side-effects, but you can read about them elsewhere at this site. In addition, my side-effects were most likely worsened by a predisposition precipitated by a variety of catastrophic injuries, received decades earlier. Most people do NOT suffer these side-effects.

Somewhat oddly, despite having disease "all over," I NEVER felt a node ANYWHERE, and neither could my doc, an internal medecine guy with about 30 years of experience (trained at University Zurich and Duke). My excised biopsy (an excise biopsy is one in which the whole mass is removed at once)came from my armpit, and the surgeon told me that it was "about the size of a golf ball." Yet, as I said, I never felt anything. (My next door neighbor, who had NHL about a year before I got diagnosed, had his biopsy from the same area, but it was "baseball sized.") OUCH !

In most cases with widespread HL (Stage III and IV), chemo without radiation is the approach of choice, and usually for a long duration. I, too, had six months (12 infusions) of chemo, and it is a long road, believe me.

My infusion day lasted at first about seven hours per sitting, but later got down to about six hours and 15 minutes. I felt like the "Michelin Man" at the end, and could hardly walk, in part due to the sedatives and other drugs given to reduce possible allergic reactions.

Since he is in for a longer-than-average treatment plan, I STRONGLY recommend an infusion PORT. This is so much more convenient, and avoids possible vein damage. I had one, and would not do long-term chemo without one.

Stage III, of course, means that cancer has spread both across, and up and down, the chest (Stage IV, in lymphoma, is when the disease has also moved into a non-lymphatic organ).

The "A" simply means that the patient does NOT experience "B" symptoms, which in HL are such things as night sweats and a few others. I was "A" also, and the doc told me that usually (not necessarily always) the absence of "B" symptoms means a less aggressive disease.

My drugs were abvd, with rituxan (written "r-abvd"). I recommend rituxan, if the doc otherwise feels that it is clinically suitable. Rituxan has a very good track record with lymphoma patients. In early stage patients, in fact, it is sometimes used exclusively as a treatment, without ANY chemo, but never singly (I have read)in late-stage disease.

Do enquire again, if this is helpful. Note that you can respond to anyone publicly or privately.

don

Yes, my husband had swollen nodes in his neck, chest and then one spot below the diaphram. He's also having a port put in like you mentioned. They're supposed to be taking care of that some time next week. The doctor seems very hopeful about this situation and even patted me on the shoulder and said, "He's going to be fine." I'm hoping those weren't just words to comfort a worried wife, but his honest opinion.

What was the most helpful for you when you were going through treatment? I want to do everything I can to help him out and keep him comfortable.

Hi,
I don't have the same diagnosis, I am classical HD stage 2BX, but I have a few suggestions for going through treatments. I am finding that having visitors at the house is great, and having something planned every week to look forward to helps alot. I try and get out every day for a walk, or to run errands and when I am feeling good to fully take advantage of it and do something fun. Try and do something fun on chemo days. Talk to Greg alot and find out what he needs, it might change multiple times a day. Sometimes he might really wan the help and others not. Also, let people help as much as possible, have people bring meals, shop for you, clean up the house, walk the dog etc. Rebecca Katz has great cookbooks for cancer patients with lots of ideas on how people can help. For instance, she suggests a snack maker as well as a meal maker- this has been wonderful! I mention this because you are the care taker and you may need the help too.
This site is an amazing resource- ask any question you have and people here will help. It has been great-

-Kristi

p.s. a great online meal/volunteer planner is lotsahelpinghands.com It has been a great resource for my family and friends to easily sign up to help. You can have a friend facilitate it too

Kristi,

Thank you! I love the ideas. :) I will check in to that website.

Heather