I was actually diagnosed with stage IVb HD 20 years ago when I was 12 years old - I just turned 32 on Easter!! I would love to connect with other long term survivors and learn what their experience has ...
I was actually diagnosed with stage IVb HD 20 years ago when I was 12 years old - I just turned 32 on Easter!! I would love to connect with other long term survivors and learn what their experience has ...
Hi,
I was 22 when bout 1,28 with bout 2 and 52 with treatments for NHL...My suggestion in to get into a Long Term Survovor Clinic..Not sure when you live but I hope there one near you. I would be asking about Thyroid problems , Heart problems which all acuree 20 years after. Let me know if I can help in any other way.
PC
Thanks PC. I am lucky enough to have recently been connected with a LTC. I was in an area for a while where there wasn't one. I too have experienced many of the late effects include thyroid, cardiac, lung, skin, muscular... but I am happy to be here with a wonderful family! I hope you are doing well.
Hello there and congratulations on being a survivor ... I was diagnosed 16 years ago when I was 27 with Hodgkin's Disease, Stage IIB. I was treated with MOPP chemotherapy and mantle field radiation. Until recently, I haven't really had any complications. The chemotherapy left me sterile so I was never able to have children and a couple of years after completing treatment, my thyroid quit working from the radiation to that area.
Beginning about 9 mos. ago I started having respiratory problems that just kept getting progressively worse, no matter what they tried. Recent CT showed a mass in my right lung ... I had a bronchoscopy last week to biopsy it, but it had compressed/narrowed my bronchial tubes so much that the pulmonologist couldn't get the bronchoscope to pass through to get into my lung ..... so, she was unable to get to it to obtain a tissue sample for biopsy. Tomorrow I meet with their thoracic surgeon ... he is gonna have to go in and get it. I have to be honest and admit I am pretty scared and don't have a good feeling about this .... it is in the same area that I received radiation 16 years ago. The symptoms are BAD ... horrible, horrible cough, shortness of breath and wheezing and nothing has responded to any of the treatments they've tried .. antibiotics, steroids, inhalers. Plus I smoked for 25 years. I don't anymore, but it looks like I might have quit too late ..... so, if it is cancer, I don't know if it's due to the late effects of the Hodgkin's treatment, smoking, a combination of both, or none of the above. I guess it really doesn't matter anyway.
Please say a prayer for me and good luck to you.
Cheryl
Hi Cheryl
I am so sorry you have to go through all this. It must be so terrifying because you really know what everything entails... I was just recently warned about the soft tissue and bony sarcoma risks so the cause may never be known. Radiation is pretty nasty... I will be thinking about you and praying for you. Please keep me posted as to your progress. Feel free to email me anytime. Again, my thoughts and prayers are with you.
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