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Stage IV Hodgkin's

Mohammad
Posts: 1
Joined: Mar 2006

I have just been diagnosed with stage IV Hodgkin's disease (classical type).
I have started my ABVD chemo treatments (1 so far out of 12).
The PET scan report shows that it is present in:
-cervical nodes (posterior, anterior), periclavicular, mediastinal, paratracheal, sub carinal, and axillary nodes.
-retroperitoneal nodes (the most voluminous mass found, my primary node)
-Iliac crest, sternal body (L5), left humerus, head of the right femur
I would greatly appreciate any advice, support and information which could help me go through this. I would be particularly interested in hearing about the experiences of people at the same stage of the disease.
Thank you

Waving
Posts: 43
Joined: Sep 2004

You can find links to more websites for information and support on the webpage www.cancergen.com/lymphoma. The Leucemia and Lymphoma Society has a very good website at www.lls.org. They run many forums including one called "Living with Hodgkin Lymphoma".

dpomroy's picture
dpomroy
Posts: 137
Joined: Dec 2000

My understanding of the disease is that regardless of the stage...it is a VERY treatable cancer with an excellent prognosis. Hang on to that. My mom and sister-in-law are both nurses and were actually jumping up and down excited that my lymphoma was Hodgkins rather than NHL when the biopsy results came in. Hodgkins really hates radiation, and I am guessing that you'll be having some of that after chemo. Best of luck to you.

reddingf31
Posts: 5
Joined: Mar 2006

I had large cell non hodgkins lymphoma stage four and I had no chance of survivor and that was 11 yrs ago, I had lots of family, friends and prayers in my life but , that is not only thing that i had to comfort me and give me strength , i had to keep a good diet and treats and go to doctors I also went to support groups which helped a lot but, if you are going to make it you need a possitive attitude and give thanks for all you have even on your worst day. I don't remember much but, I do remember the love of family and friends as much of doctors, talk to everyone and anyone about your feelings and don't hold anything back , you will be in much better spirits is you are keeping a good attitude , diet, friends and family not to mention the lord which is right beside us all the time we are going through these trying times. I hope I have helped , god bless and message me on yahoo if you would like to talk. One last respond if I can beat this you can too.

allisonf
Posts: 4
Joined: Mar 2003

Hey Mohammad-

I was diagnosed with Stage IVB Hodgkin's almost 5 years ago (5 days before my 21st birthday....that was a good year!). The cancer was pretty much in everything that it could possibly infect, including my bone marrow. Due to the advanced nature of the disease, ABVD was not an option for me. Instead I was given BEACOPP, with no radiation and the possible necessity of a bone marrow transplant.

At first, I went through all of the normal stages....fear, anger, depression etc. This disease was forcing me to leave college (who politely decided that they would not refund the $15,000 I had just spent on the semester), it was causing me to leave my job, it was isolating me from my friends at a time when we were all supposed to be just starting our lives. Since I was starting treatments in the early fall and progressing into the next spring, I couldn't even really leave the house, as my immune system was far to depleted to survive any chance of infection bred thorugh the harsh Brooklyn winter. I was faced with essentially losing a year of my life.

Then I began to think about it more, and I realized that me feeling sad or angry was not going to make my cancer go away. And I decided that I was NOT going to just hand over a year of my life to this disease. If I had to be cooped up and go through recovery therapy for a year, I sure as hell going through swinging. Ever since I was a little girl, I had wanted to become a chef, but never thought of actually persuing it. I went online and bought every book that I could to help me reach this goal. I watched endless hours of food network and PBS on the days I was not well enough to stand, and practiced in the kitchen on the days that I was. ABout 13 months after my diagnosis, I started an apprenticeship at a small bakery in my neighborhood.

A few weeks ago was the 4th anniversary of my last chemotherapy treatment. Since then, I have served as Executive Pastry Chef of a prominent New York City restaurant, Executive Chef of a popular Brooklyn establishment, and am now the Executive Pastry Chef of one of New York City's finest health food services.

I'm not going to lie....this next year is going to suck BAD. But remember you have the chance to further your mind in anyway you want, and the only thing stopping you isn't the cancer but YOU. Pick up any hobby that interests you, or do something you've always wanted to but never had the time (aside from cooking, I also learned just about everything you could ever know about ice hockey. GO RANGERS!). You have a lot of time on your hands to sit on your ass, enjoy yourself, and throw your brains up every once in a while.

Just make sure you make the times when your head isn't in the toilet count.

Jian
Posts: 8
Joined: Oct 2010

You inspire me

truckingalong
Posts: 444
Joined: Aug 2010

Hi, Mohammad,
It was scary at first with the big "C". Now, I feel more adjusted knowing that I can beat Hidgkins with time - what really helped me along the way is using this network of survivors giving me lots of guidance with cheers and humor and prayers! Just received 4th tx of ABVD and still will need 6 to 8 more (4 to 5 more months). It's present in my neck, under my arms and groin plus some in my chest, right pelvic area and tailbone area. I already started to feel better and notice lymph nodes shrinking but at the same time feeling fatigued from the chemo effects - it is better than feeling sick...
One thing I would caution you is not to be discouraged when reading the websites or info from the internet related to HL, sometimes the info. is outdated. You should ask your oncologist and as well ask us and we will help you with some answers as best as we can - it is most reliable that way. At any rate, we are lucky to have this general diagnosis - it is highly curable - 90 to 95%.
Keep positive thinking and we will beat it! Good luck!
Liz

truckingalong
Posts: 444
Joined: Aug 2010

Please feel free to keep me posted on how you are doing. Be thinking of you with prayers.

Liz

captainswifey's picture
captainswifey
Posts: 14
Joined: Feb 2010

I beat HL stage 2. Im two months out from my last treatment. And so far everything looks good. I go back next for blood work and a ct scan and dr's check up. Wishing you all the best with your treatments. :)
Jackie

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