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Stage IV Classic Hodgkins

JesseK's picture
JesseK
Posts: 10
Joined: Oct 2011

Hi everyone.
I found this site late last night and decided to reach out a little this evening. I was diagnosed with Stage IV Classic Hodgkins last week. I met with my Oncologist at the VA hospital today, in addition to attending a chemotherapy informational briefing. I'll get my portacath installed Friday and begin the ABVD treatment regiment Monday. Today made it all sink in. This all started with back pain they thought was a bulged disk rubbing against my sciatic nerve. They treated it as such for a few months, and when it wasn't self correcting they went in for an MRI and saw a "shadow" on my pelvis. Now they're telling me a have cancer in nodes from my neck, to my chest, to my abdomen, to my pelvis. Apparently the pain (sent me to the ER a couple times) is actually due to the cancer deteriorating the left side of my pelvis.
I was told that 2 out of 3 people at this stage experience full remission and are alive and well 5 years later. I feel like thats just not good enough. I'm 31 years old with two children under 3 years. I just want to know I'll be around for them as the grow up.

Anyone with experience with stage IV have any good remission stories to tell a freaked out Army vet. We don't get freaked like this too often!

truckingalong
Posts: 444
Joined: Aug 2010

Jesse,

Believe me - I know exactly what you are going through - I had similiar symptoms - had some cancer in nodes, groin, pelvic area, tailbone area and chest area. Found out in Aug 2010 and had also Mediport put in and felt like I am a pin cushion. I had 6 months of ABVD treatments - last one last Feb. Recent PET and CAT scans showed that I now am in FULL remission!

You will get through treatments with support from family and friends - thank god for them. Please be careful and not to believe everything you read about statistics, etc. about cancer. Some are old and outdated. Hodgkins is highly treatable.

I am truly blessed to be part of this support site as it helped me get over the bumpy roads.

With positive thoughts,
Liz

JesseK's picture
JesseK
Posts: 10
Joined: Oct 2011

Congratulations! A year of being in remission is right around the corner for you! That gives me a lot of hope, Liz. Thank you.
J

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Jesse,
I'm sorry you are having to deal with something like this, especially at such a young age. I have Follicular NHL, stage 3..neck, stomach and groin (61 years old). I finished chemo last Dec with great results. My situation is not quite the same as yours, but I'm confident the end results will be similar. The chemo will shrink your tumors and a year from now you will not feel freaked out, but instead relieved with a new sense of how wonderful life can and will be for you. You WILL be around to watch your babies grow up, so keep the faith. We will be here to help you through this journey, so keep coming back for support, or just to vent whats on your mind. Most of us have completed treatment which will help when you have questions about what you are feeling or going through. Good luck tomorrow with your porta cath placement...it's quick and fairly painless..you will just be a little sore for a few days. Please check back in anytime...we are here for you. Best wishes...Sue
(Follicular NHL-stage3-typeA-grade2-diagnosed June 2010)

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Jesse,
Same here. I was diagnosed about a year and a half ago with NHL-stage 4. Mostly in my abdominal area. I went thru 6 treatments of R-CVP and have been in remission for a year. The treatments are no fun but you will get thru them. What we have is very treatable with new treatments coming along all the time. Just stay away from all those web sites. They are mostly outdated and will scare you out of your wits. John(FNHL-1-4A-DIAG.5/10

JesseK's picture
JesseK
Posts: 10
Joined: Oct 2011

Thanks, John. Its especially helpful to hear that you went from stage 4 to remission after 6 treatments. I'm getting as much info as I can from my Oncologist and chemo team. Prior to that, all I had to go off was hearsay. I'm losing my ignorance as time passes. Take care.
Jesse

JesseK's picture
JesseK
Posts: 10
Joined: Oct 2011

Thanks, Sue. I reread what I wrote last night and realized I was in full freak out mode. I'm doing a lot better today. Yours, Liz's and John's comments helped a lot. Its really nice that there are people out there like all of you that have beat this thing and continue to support folks like myself, just beginning to go through the wringer.
And thank you for telling me about your porta cath placement experience. I'm nervous about all this stuff; I've never spent much time in and around hospitals.
jus
Gotta go...I think my fingers banging on the keyboard is waking up my son. He just conked out watching his favorite dinosaur movie in my bed.
Jesse

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

What a sweet image - your son conking out watching his dinosaur movie!

Jesse this is all very scary at first but you will find after you have been
through a couple cycles it becomes somewhat routine and easier to deal with.

Having a good attitude is very helpful in dealing and healing with all of this.
I'm kind of a clown so my sense of humor has been a big help to me. So laugh
and frolic when you can - it will make you feel better and take the edge off.
Anti anxiety medication really has helped me also so you might discuss that
with your doctor. It doesn't mean your weak - it just helps keep the "worry
monsters" at bay.

Use every resource you can for support - we can't have too much of that. Just
remember there is no right or wrong way to deal with all of this. It's a
process and it's very individual though there are many common aspects that
folks here can share with you and offer a shoulder to lean on, an ear to listen
and very long and warm cyber arms to hug. You can come here and rant, rave, cry,
shout, and laugh too. It's all okay.

Again, welcome here and big hugs,

Jim

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

Hey just hang in there, I'm a two time cancer survior, my second was NHL stage 4 with bone involvement, the chemo knocked it out by the eighth treatment.Stay positive my friend! Vinny

JesseK's picture
JesseK
Posts: 10
Joined: Oct 2011

Eighth treatment...that's great, right? I just had my first Monday, still feeling a little ill, but it's going away. Seven more times would be amazing! Thanks Vinny.

Matthewsmom1's picture
Matthewsmom1
Posts: 20
Joined: Oct 2011

I was diagnosed with Stage 4 Hodgkin's while pregnant with my son 14 years ago. Had 8 months of ABVD but could not receive radiation due to lung damage from Bleomycin. I am still here 14 years later! Get strength from those precious babies and keep fighting!

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Just love to hear positive stories like this. It gives us all hope.I have been in remission for a little over a year.I also had stage 4 and was treated with R-CVP,6 treatments.Did you have Rituxan as a maintenance? John(FNHL-1-4A-5/10)

JesseK's picture
JesseK
Posts: 10
Joined: Oct 2011

Will DO!

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