I have refractory hodgkins lymphoma
Posted on: Thu, 09/10/2008 - 17:52
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I have refractory hodgkins lymphoma
Heya, back in feb i was diagnosed with stage 2a hodgkins lymphoma. After 6 months of chemo i was told that my PET scan showed that i still had active disease in my neck and chest. I am currently having ESHAP chemo and then i will have to have a stem cell transplant. I am very scared about the outcome of this, i was told by my consultant that i have 40-50% chance of being cured now but from reading studies on the internet it says i only have around 10% chance of living for more than 8 years. I dont know what to believe, has anyone else been through a similar experience?
Write back love lisa xxxxx
Very sorry to hear about your illness, and about the doctors' guess-stimate of your chances. Please bear in mind that this is just a guess-stimate based upon old statistics. Mine told me I would 100% die in "3-4 months" and I am still going 17 months later, and not doing too badly. Please please do not start peering into the fiery pit known as the www. You will, as quite a few of us have discovered, be left with a lot more information than is good for you: the thing is that many of the sites are not regulated, or they have their own agenda to get you to part with cash for quack products. You also have to remember that the sites may not be UK ones, and other countries may have not only worse facilities and fewer treatments but many other factors, like worse diets, different genetic makeup of the people involved and taking into account people who are far older than you anyway. Please do not let these negative factors get inside your head. Think about now, about how your treatment is zapping those bad cells, how you are going to have your transplant, and you are going to get well again. Then you are going to look after body. We are here to share your fears, but also hopefully to lift your spirits and see above those gloomy websites. Sending lots of (((((hugs)))))). xxx Penny
Penny
Hi i have hodgkins lymphoma and was always assured it was very treatable so am surprised at your predicament!!
You will have to excuse my ignorance but what is refactory hodgkins and are the sypmtoms the same as hodgkins?
Refractory hodgkins lymphoma means that the first line of treatment (ABVD) didn't work as i didn't reach remission. Yeah it is supposed to be very treatable i'm just one of the unlucky ones :( Good luck with your treatment xxx
Hi Lisa
I had Non Hodgkins Lymphoma stage 3e (extranodal). I didn't have much luck with the results of the first course of treatment and so I also had to have an stem cell transplant . I remember how scared I was too. I had the transplant in November 2003 and haven't had any signs of the lymphoma since. I also read up on the statistics and frightened the life out of myself. All I can say is, I'm here, 5 years later and still kicking!
Try not to worry. I hope that things work out for you too.
Heya, i'm glad i have found someone who understands what i am going through as you have been through it yourself. How was the transplant for you? I understand that it makes you very ill?? Are you now cured of NHL? Write back love and hugs lisa xxxxxx
Hi sorry to hear about your predicament,you had me really worried for a while,do you know how common refractory hodgkins is?
I am also on abvd and also getting rituximub so fingers crossed!!
I hope you can take heart from Lilly who is 5 years on and seems to be well.
Good luck to you anyway and try not to read too much into the scary statistics that are on the go.Some of these websites can scare the living daylights out of you!!
cheers Gary