Brand new here. 59 year old male. Hodgkins in neck (Stage 1/borderline 2). Bone marrow clear. First chemo Tuesday; followup yesterday. No issues except insomnia after chemo; dr. deleted the drug causing it from yesterdays followup. Will have 2 sessions/month for 4 months then 3 weeks radiation. Glad I found you all here!
Maxman-
Welcome to supportgroups.com. Do you know what chemo regimen you are on and which drug was removed?
Ross
Don’t know the regimen. I believe they removed Decadron.
Welcome!!!!! I am also new here and very glad I found this forum. I'm 38, dx with Hodgin's stage 2A and just finished my 5th chemo.
Hi Maximan! Hope it all goes well for you, it gets easier as you get more blase. I was 45 when I got it. I'm almost 55 now, and I hope that encourages you. Been there, done it, and I reckon if you've got to get cancer, it may as well be this one.
Thanks Tony - that’s what I’ve been told. Hope it continues to stay away from your door.
HI EVERYBODY. JUST NEWLY DIAGNOSED WITH HL. TESTING BEING DONE TO DETERMINE STAGING. I AM SO SCARED. NO ONE IN MY FAMILY EVER BEING DX WITH CANCER. I HAVE HEARD SO MANY BAD THINGS ABOUT CHEMOTHERAPY. I VISITED MY HEMATOLOGIST ONCE. CAN ANY ONE ENLIGHTEN ME ABOUT HL AND IT'S TREATMENTS.
Hi Dominicanprincess... I guess you speak spanish? I am hispanic too :)
I was dx in december and I understand what you are going through right now.... The first days are the worst!!! Once you have more information and a treatment plan I think things get a little better.
About HL and different treatments, I don't have too much info and to tell you the truth I did not want to go online because I am one of those people that get scared easily and I didn't want to start reading sad stories... so at least for a while I'll just try to go with what my doctor say ( about 90% cure rate) and I'll put my faith in God that I'll be one of those cases.
As for chemo treatment, everybody is different... In my case, it is going smoothly and the main side effect has been the moderate to severe fatigue after every sesion.
Good luck and keep visiting...
Hi Dominicanprincess (mind if I call you Dom from now on?). You will cope. Mimmi speaks sense, the fear of the thing is worse than the thing. There are some bad things said about chemotherapy, but they don't happen to everyone, and they end with the treatment, by and large. There is one very good thing to say about the treatment for Hodgkins - it works! Take someone with you for support, at least the first time.
Obviously, there are differences in protocols between countries, but the treatment is the same. Mine was administered by a specialist nurse, who explained every step of the procedure, and was there every time I went, almost. Doctors oversaw the whole thing. What struck me on day one was how relaxed everybody looked. By my third trip, I felt like an old hand, and the biggest problem I faced was boredom.
It's easy for me to sit in my armchair all these years later and say "Don't panic", but don't panic. There is a very good chance this will be no more than a temporary episode in what will be a long and happy life.
Unlike Mimmi, I took a look at the internet as soon as I had the diagnosis. I realised quickly that the first 10 or so sites all said the same thing. Ignore any madcap ideas, and concentrate on the sensible comments. The treatment is long established, you will not be the first that your doctor has seen. And in the unlikely event it doesn't work, your doctor has more tricks up his sleeve.
The lump on my neck has gone down, so chemo is working. Good report from doctor visit today. Haven't had nausea or pain from Nulasta. Pretty tired 2nd day after chemo but maybe that was catching up from the 3 hours sleep 2 nights before. All good so far. Decided to pass the chemo hours by reading.
Awesome to hear all around, maxman. no pain from the neulasta either, that’s great too…
HI EVERYONE. JUST FINISHED ALL THE TESTING. PET SCAN NEGATIVE EXCEPT ON THE LEFT SIDE OF MY NECK. HAVE NOT SEEN MY DOCTOR FOR STAGING. THIS IS ON MONDAY. HOPE EVERY ONE IS DOING FINE. THANKS MIMMI AND TONY FOR ALL THE INFO. GLAD TO HAVE FOUND YOU ALL.
DOMINICANPRINCESS: Exactly the same as me; left side of neck only. Good luck to you!!!
GOOD LUCK TO YOU TOO MAXMAN. THANKS FOR THE ENCOURAGEMENT. HOPE EVERYTHING GOES WELL.
DOMINICANPRINCESS, MAXMAN and all others recently diagnosed,
As some here know, I had stage 3 HL 30 years ago. Did chemo, radiation, and have been just fine since 1981. And the treatments have improved even more since then.
This is a very beatable disease. There will be some anxious and rough moments, but hang in there and you will be fine in the end.
Doug
Thanks Doug; I know you’re right!
you're welcome.
Hang in there, you'll do fine.
Doug
Hey Dom! Looks like you and maxman have a left-neck group in the making. Stay calm, all will be well. The big problem with worrying is that it makes you worried. And maxmen - I like the news.
I will happily be a member of the “left neck” group! I was diagnosed with stage 1A HL back in November 2009. 8 chemo and 21 radiation treatments later (May 2010) scans showed all clear. I’ve had Dr. visits/CT scans at 6 month intervals since then and see my radiation oncologist every 4 months. So far so good. All the positive things folks are saying are true! I’ve gone from cancer diagnosis to almost 1.5 year survivor and I don’t know where the time went. I’ve not posted here for some time but the “left neck” comment caught my attention. Hang in there.
They removed Decadron from my next day flush(es) but can't remove it from the Chemo day. So up 'til 5am the night after Chemo. Said to take a couple of Benedryl around 10pm but I didn't get a chance to pick it up. Fine today on 3 hours sleep (just like after the first treatment) but will probably be drug out again tomorrow. So far, that's the only real side effects I've had.