Stage IV survivors

Hi,

I was recently diagnosed with Hodgkin's disease Stage IV at age 25.

Are there any Stage IV survivors out there? It would give me lots of hope to hear your story! Stage IV scares the hell out of me.

Thanks a lot!

On 2/6/2009 huhodgk wrote:

Hi,

I was recently diagnosed with Hodgkin's disease Stage IV at age 25.

It has spread to my lungs (thus Stage IV) but not below the diaphragm. I don't know the bone marrow results yet. Blood tests are quite good. My treatment is about to start (6x ABVD, 1 month of RT).

Are there any Stage IV survivors out there? It would give me lots of hope to hear your story! Stage IV scares the hell out of me.

Thanks a lot!

Hello, I was diagnosed with HD stage IVBb 10 months ago. The disease had spread through my lungs but just like you remained up the diaphragm. I have been through the 6 cycles of ABVD and 1 month of RT. I am still waiting for the first follow-up scan. But what I can tell you is that ABVD worked really well. You are still very young (I am 41) and you should bear quite well the treatment. So don't worry too much, you will see the end of all this. Did you receive the bone marrow analysis results ?

All the best,

I really do hope that this message gives you some encouragement & hope! I am a survivor of stage IVB, mixed cell Hodgkin's Disease! HOOORAAY! I was diagnosed with this lymphoma 16 years ago! At that time of my life, there was only about a 75% cure rate compared to the almost 98% cure rate now! I went through every imaginable test possible. The one that really was painful, was the bone marrow biopsy. I had 3 of these performed on me at the age of 28! I went through 7 cycles of M.O.P.P HYBRID chemo & 2 chest surgeries! I had a tumor that was the size of a watermelon wrapped around the outside of my right lung! It stemmed off of my thymus gland & had been inside of me growing for about 10 years, so say the doctors! I was inside of the hospital for about 2 1/2 months! FUN!                                                                      

Even though my immune system will never be the same, I am a PROUD survivor of HD! Try to keep a positive attitude whenever possible, maintain a healthy diet and you to will be a victorious, survivor of Hodgkin's Disease!  Best of Wishes to You!    Greg!   

My daughter was diagnosed with stage IVa and it had spread to her shoulder blade.  She was considered bulky disease.  They gave her a 70% chance of cure.  She had eBEACOP a regimen of chemo that is not really used in the states very much due to the secondary cancers it can cause. She did 3 weeks of rads to neck, chest and shoulder blade.  I am happy to say that she is now 18 years old and has 2 years of remission.  She also is pregnant which they told her she may never have a child.  I know 18 is young to be pregnant but I am looking at it as a blessing from God and she may not be able to have anymore children.  Please don't give up hope.  It is doable and take things a day at a time and surround yourself with family and friends who will support you and help you though this.  Remember you can do this. 

 Laurie mother to Randi Renay