Just diagnosed with NLPHL

ta8631 said:

I literally havent slept n
I literally havent slept n months stress n side effects from the chemo haven't helped. Good luck n just look forward to the long life u have to live

miss maggie said:

Oh yes,
Dear Aaron,

When if was first dx in Sept 2009, not only could I not sleep, the depression was unbearable.. I would lie in bed, mentally exhausted. Eventully when I learned more
about my dx, and the prognosis, a cloud was lifted from my heart.

Give it time until you find out more. I will pray for you. Love Maggie

Max Former Hodgkins Stage 3 said:

r-abvd

Aaron,

Yes, if you have involvement in the axilary (armpit) and groin area, to would be Stage 3. I had no organ or bone marrow involvement, but had large nodes across the chest and axilary region. I never had a lymphoma symptom (except extreme fatigue), and never felt a node anywhere. My axilary biopsy was about the size of a golf ball, the surgeon told me later.

The bone marrow test gets mixed reviews: Some say it is agonizing, others say it little affected them. As I recall, it was painful at the time, but I do not recall any pain later, even the same day. It is a somewhat "primitive" technique, however.

I did 12 cycles of r-abvd, or a six month treatment. You are a bit younger (I began at 53), which will help minimize side-effects. Generally, the fewer treatments, the fewer the side-effects, or the weaker they will be.

I had an assortment of fairly serious side-effects. Your experience will be DIFFERENT, and most likely EASIER. In general, my first one or two cycles were not too severe, although I did feel like I had the flu immediately, and this lasted for seven months.

Your hair will fall out after about three weeks. I lost even my eyelashes and eyebrows. But, it will rerturn within a month or so after treatment ends.

I got fairly severe neuropathy (numbness) in my hands and feet from the Vinblastine. I still have some of this numbness today. Some folks get it severely, some get none; most are somewhere in-between.

I had lung toxicity from the bleomycine, and still suffer from shortness of breath, but this may be because I had suffered severe chest injuries years earlier in an accident.
Around 90% of users suffer no ill effects from bleomycin.

I lost all sense of taste after about two months of treatment, but later regained normal taste.

I would caution againt fatigue. By the end of treatment, I was sleeping around 17 hours per day, and had lost about 15% of my beginning weight.

Do get an IV PORT ! This is something I highly recommend. Also, tell the surgeon that you want an IV port that is "CT Contrast compatable."

I also recommend to everyone the very hig-quality site "chemocare.com."

May your road be easy. For patients under 40, NLPHL has a 90%-plus complete remission rate at five years. But, do not fixate on "numbers." Just remember that it is a very treatable disease.

max

This thing of ours

Aaron said:

This thing of ours
It's amazing how they find this stuff, I had a biopsy on my axillary node 7 months ago and it came back benign. Like you on an unrelated test(ct scan) they saw more nodes and the pathologist retested the sample along with folks from the university of washington and came up with the new diagnosis. I'm going to start a new thread about this but did you go through chemo with pets in your house? Ta I suspect my daughter will put me in the same position your children have put you, we have to keep moving cause our little ones leave us no choice. Max, are there others like us on this board with the same subset? I'd be very curious to hear other diagnosis stories. Frankly id bet the odds of finding this ( thing of ours ) before stage 3 is remote.