My journey....starting with a swollen right groin lymph node.

merrywinner said:

Moving along!
Things are underway for you it sounds like. You mention you are a stage 1 and 2 and I could be wrong but are you sure that is not your grade? The 1 and 2's are the indolent or slow growing types and they can tell that from biopsies. The upcoming scan will show the areas involved such as above the diaphragm, above and below, left side, right or both, other organ involvement etc. This will determine your stage. Plus the bone marrow biopsy. I was diagnosed 2 years ago with follicular NHL grade 1 stage 4A. The letter refers to without symptoms(A) or with(B). I was very upset at being a stage 4 with the lymphoma very widespread but after talking with my hematologist was able to understand that with lymphoma it does not matter where it got to it is all still lymphoma and when they treat it, it all gets treated. In addition I had 50% bone marrow involvement. I now am in complete remission including the bone marrow. As to that bone marrow biopsy I just don't understand why so many are put through that with just a local anaesthetic. It's a rough procedure and they have the means to make it a whole lot better. My MD always puts his patients under light sedation one of the reasons being that they have to go in twice at the back of the pelvis both sides. I have had this procedure twice and both times I was put to sleep with what is called MAC sedation standing for Monitered Anaesthetic Control. It is great and holds much less risk and recovery time then general anaesthetic. I went to sleep and woke up when it was all over. I don't remember anything nor did I feel anything yet I was recovered and ready to go in less then an hour. In fact if you wear the right clothes(sweats) or something that is easy to get partially down you don't even need to get undressed. I felt fine with no nausea or anything and walked out with a dressing across my lower back. They medicated me for pain through the IV before they woke me up so the sore back came on gradually over the next several hours but was not too bad, just needed Tylenol for it. Tell them you want the MAC or light sedation and that you don't want to be aware of any of it. Hopefully they will be in agreement. Sorry this has gotten so long but for me at least I wanted all the info I could get and understand from anyone who had experienced it. Good luck!! Mary

Grade
Mary,
You are absolutely right - it is grade not stage. I'll get all this lingo down eventually I'm sure.
As far as the MAC I'll definitely ask for that. I, just like all of you here, have been tortured enough already so I'd rather be out as much as possible. The original biopsy left a 4" scar on my right groin and I can finally sit and move around better now fromthat procedure from just under two weeks ago.
At least for me, I enjoy and am encouraged by your post and so many others...regardless how long they are. I want to know the good and bad from those with experience. Just as someone helped you out, and still does here, I appreciate the assistance and "family" atmosphere here.
We all are on a similar journey but will experience many different things along the way. I'm sure my turn will come to help ease someone's mind or give a little advice.
Thanks again and have a great weekend.
Aaron

AaronW said:

scan
Starbucks addict myself so I'm with you on that

Thank you for the insight....have a great weekend.
Aaron

Tests this week....
Well, Tuesday the 7th at 1pm is my PET scan (took forever for insurance's medical board to approve it as "medically neccesary")....duh of course it is! Ironically, it is our 9th wedding anniversary.

Thursday the 9th is the BMB. I'll keep you all posted....

Aaron