Some tough times right now

hinkley

My wife was diagnosed with Hodgkins Disease a couple of weeks ago. We met with the Dr. today to go over her PET and CTScan results. As much as we were hoping it was confined to above her diagphram, one spot showed up on her spleen as well, putting more in Stage III than II. The treatment is going to be 6 months of ABVD. We both are very upset and worried right now. Any encouragement or advice from people who have gotten through similar situations would really help. She is 30 years old.

Miklini

Just wanted to let you know that the standard protocol is 6 months of ABVD. So don't feel that your having more than most because of stage. You will most likely have scans at your half way point (or before) to make sure that the chemo is doing it's job. I think since chemo is systematic (going to all cells in your body) that it's not too much of difference whether your stage 2 or 3. I have just completed 6 months of ABVD and I am Stage 2A (A meaning no symptoms)and am now waiting to see about radiation. I know your mind is going in a million different directions but once you start chemo you'll settle into a routine and you'll do fine. Just remember to ask for whatever you need from family, friends and of course your doctor/nurses. I had hard time with that but luckily I have a great family and lots of goods friends supporting me. You'll do fine.

Take care
Kathy

dpomroy

Of course you are worried, this is charting into unknown territory for you both which is scary. When I was being staged, my oncologist told me that with Hodgkins it didn't really matter what stage it was caught in. What mattered was aggressive therapies to get rid of every last cancer speck. She said that the odds of living a long, healthy, normal life are well over 90% no matter what stage you were diagnosed at if you got rid of the cancer the first time through. Hodgkins can be really mean if you don't get rid of ALL of it. 6 months of treatments may seem like an awful lot, but it is better to have one chemo too many than to have the Hodgkins never totally go away. 6 months of "not fun" is worth it if you get a lifetime. It won't be easy, but the end results are so very worth it.

chris24

Peter&Sandy

Sounds like you and I are going through the same steps at the same time. I just got my CT back and my spleen is "mildly enlarged". We are not sure if it is cancer or not, I get my PET scan done tomorrow. I had my first round of chemo today. It is not an easy time but it is a time you and your husband will get through TOGETHER!!! My wife is by my side and my inspiration. You both will fight and you both will win, as will my wife and I. I also had a Bone Marrow Biopsy today, which included a fair amount of pain. I hope that comes back negative bc if it does not that puts me at a stage IVb (I have a few sypmptoms..Night Sweats are the WORST!!!) Two Docs both told me even a stage IV is very treatable and we will fight this....SO WILL YOU BOTH!! Please email me if you like, we are on the same timelines and diagonsed at the same time and it might be good to talk to eachother. My email is: guski24@hotmail.com

As I say, my chest is out and I am ready for battle!!!! I'll be right beside you on the battlefield and WE BOTH WILL DOMINATE AND BE VICTORIOUS!!!

Chris and Danielle

polly47

You'll get through this! Just be there for each other. Put your faith in God and he'll show you the way and help you through this journey. When my husband was diagnosed in March of 2001, I thought that my world had ended. Quite the contrary. He is now doing wonderfully and is back to work full-time. This whole experience has made us more aware of what's really important in life and how much we mean to each other. You will get through this, too. Good luck!

polly47

I forgot to mention that my husband was a stage IV B. His Hodgkins's had affected his bone marrow. He also had enlarged peritoneal nodes. Night sweats were the big tip-off that something was wrong. His only other complaints were fatigue and back pain. Once again, good luck to you both.

ilaina

Peter and Sandy,
I know exactly how you feel. I'm 24 and was diagnosed stage IIIB in May and was hoping I was only a II. I also had a spot on my spleen that classified stage III. I have had 9 ABVD treatments and can finally see the end. I recently had CT scans and got wonderful news. There is no cancer on my spleen and the rest near normal size now.

I have done fairly well with my treatments. I'm a little tired, but I haven't been real sick. Let me know if you have any questions or just want to talk.

You'll get through this!
Ilaina

guitarman

Peter and Sandy ,

I was a stage III. I had a large tumor on my spleen the size of a baseball. I had my spleen removed and then started my treatments. I had radiation therapy. This was 3 years ago and I am 33 years old now..

I know what your going through. Hang in there..

Larry Jackson

trekgirl

Peter and Sandy

I'm sorry to hear about your diagnosis, it's a tough thing to hear. But there is so much hope. I was diagnosed with stage IIIa when I was fifteen years old- I am now cancer free at 32. I had a lump in my neck, a mass in my chest, and the cancer was all over my spleen (they took that out). I went through over a year of chemo (ABVD and MOPP). You will get through this AND a positive mental attitude is essential. If there are any questions I can answer for you or if you just need someone to talk to who has been through this, you can email me trekgirl@mcn.org

Good luck - I hope things go well

-Jenny

amasurvivor

Hi Peter and Sandy. I was originally diagnosed with 3B and did 6 months of AVBD. This diagnosis and treatment is not as horrible as you are fearing it to be right now. You will get through it one day at a time and before you know it you'll be done. Being married and dealing with this can be a challenge. It was very hard on my husband. If you need encouragement in any area please feel free to email me (or my husband) amasurvivor@tampabay.rr.com

hinkley

amasurvivor said:

Hi Peter and Sandy. I was originally diagnosed with 3B and did 6 months of AVBD. This diagnosis and treatment is not as horrible as you are fearing it to be right now. You will get through it one day at a time and before you know it you'll be done. Being married and dealing with this can be a challenge. It was very hard on my husband. If you need encouragement in any area please feel free to email me (or my husband) amasurvivor@tampabay.rr.com

Thank you so much to everyone for the replies to our message. It helps so much to know there are other people who have been or are going through this same situation. Sandy had her port-o-cath put in on Friday and has her first chemotherapy treatment this Thursday. Again, thank you so much for your responses and support. They have really helped us get through some tough times over the past couple of weeks.

dpomroy

hinkley said:

Thank you so much to everyone for the replies to our message. It helps so much to know there are other people who have been or are going through this same situation. Sandy had her port-o-cath put in on Friday and has her first chemotherapy treatment this Thursday. Again, thank you so much for your responses and support. They have really helped us get through some tough times over the past couple of weeks.

Sandy will be glad for the port-a-cath! After the first chemo is behind you, you'll know better what to expect and life will feel a little more "normal". You'll just work the treatments around your life instead of it seeming like the disease is running the show. Good luck to you both.

sarahu

I was diagnosed at stage IIB. I "did my time" with the 6 month ABVD course and the radiation. To this day I am regretting going throught the radiation. After chemo, I did not have any evident disease left. I asked my onc why radiation was still suggested. He basically said, protocol. I was diagnosed with a lung disease due to the radiation/bleomycin combo. To this day I cannot walk up a flight of steps without being winded. I suggest you fully explore your options before starting any treatment that doesn't appear indicated or just doesn't feel right to you. Best of luck.

LJT

radiation following chemo and status 8 years later
I recently completed 6 phases (12 treatments) of chemotherapy using ABVD and the Pet Scan showed I was in complete remission. (I had Hodgkin's Stage IIIB - 6 inch mass in the chest and a walnut sized mass in my abdomen.)I am faced with the decision of whether or not to do radiation on the mediastinum (chest/heart/lung area)now. They essentially radiate the area where the mass use to be.
I am wondering if your wife did radiation and if she experienced problems. Any information would be appreciated