Erik1059

Hey Erik I wanted to let you know that I have had a lot going on with me this past month. I had a bilateral lumbar laminectomy on April 3rd. Because of my poor posture all of theses years I had pinched nerve at lumbar 3-4. I have had left leg pain because of it for a year. Then in march I started having horrible sciatic pain on my right leg. When my pain doc sent me to the neurosurgeon the surgeon looked at my MRI and said that he couldn't do surgery on me because I was a mess. While I was there I had the sciatic nerve flare up. Then he said he couldn't send me home with that pain. He had me go right over to the hospital for pain management and then surgery the next day. The sciatic pain is completely gone but I still have the left leg pain.
Then in March I had a echocardiogram done. I asked my doctor about ordering that because of info I have read that patients that have had mantle field radiation can have heart problems and should get an echocardiogram every 5 yrs. It showed all of my heart valves were leaking, an enlarged left ventricle with decreased ejection fraction, pulmonary hypertension and cardiomyopathy. So then I had to go to a cardiologist and he ordered a cardiac catheterization on May 7th. My ejection fraction from the left ventricle is around 40% and the normal is 60%-70%. They did find that my valves aren't leaking as badly as thought. I was put on the med coreg and I have appointment next week with the Nurse Practitioner at the cardiologist. Carol

Hi Erik. Yes, I had mantle radiation 33 years ago and am now unfortunately starting to suffer some late effects. I've really struggled to find answers from the those in the medical profession so have resorted to the internet. Reading comments posted by others has given me so much more information about my condition - although my journey is not yet over.

We haven't started the fertility treatments yet. Our 8 month old daughter was conceived using a donor. It is just difficult because of treatment so long ago is creating complications now.

Hi,,
I just read your story on FB. I am a 39 year survivor of Hodgkins. I also got diagnosed when I was 19. The treatment then was full body cobalt radiation. I have been suffering with the same issues you are too only I just found out a few months ago. I was blessed and my cancer was stage 2. In one day I got a lump on my left side of the neck and it got so big I had to take off my necklaces. I had an upper respiratory thing for about 6 months prior that I just couldn't get ride of. It turned out that a baseball size lump was in my chest. It took 12 months to complete treatment and 12 months to recover. I'm recovering now from the 2nd squamous cell surgery in 10 years. My doctor has referred me to Dana Garber and I'm hoping they take me. My doctor is trained by Dr. Stubblefield at Sloan Kettering. So Happy to finally know what is wrong. I agree it feels so my better to know about others!
Stay well

Hi, Erik1059. I just read your story. Wow. I can't imagine what it has been like for you. You said that your physical health is very good now. I'm so glad to hear this. Thank you for sharing.

Hello Erik. Thank you for letting me know about the blog. Wow! What a story. I have had a couple cortisone injections done by x-ray to a pinched nerve in my lumbar 3 for pain in my low back and leg and numbness in that leg. One in Nov and one in Jan. Because of my posture of arching my back to try and stand upright the past few years and also some degeneration through age the nerve has become pinched. I am hoping to avoid back surgery. I got approved and waiting on a hard foam vest made to my measurements. It has a front and back and is held together on the sides by Velcro straps. I am hoping this will help my posture some and thereby help relieve the pinched nerve and the symptoms that go along with it.
I hope you are doing well. Thanks for keeping in contact and letting me know about the blog.

Thanks Erik....I never heard of it but I'll certainly check it out.
Doing the best I can with what I got.

Glad to have you aboard.....Hope I don't make you crazy because I ask WHY a lot.....lol
B

Hey Erik, how hard was it to get in to see Dr. M.Stubblefield? What was the cost of a visit? How long were you in N.Y. to receive the treatment you talked about with phys therapy? How did you discover what was going on with your body because of the radiation you had received all of those years ago? How did you get doctors to listen to you and realize your body was affected by the radiation you had received? I am very interested to hear your answers. Sorry for the 20 questions. Carol

Thank you Erik! I was able to watch a couple of his videos. What are you doing that helped you? How are you coping? I always felt so alone in all of this because no one around here knows anything. Seems like they don't want to know either!

Hello and welcome, we are happy to have you with us. Please feel free to join in the conversations. Here is a link to our cancer dx page for your type of cancer. Take a look at it to get you started on some information. You will notice at the bottom of that page 4 of our active users who have had that journey already, you may wish to contact them for their experience and wisdom. Also, I encourage you to go to the questions page now by clicking on the questions tab at the top of the page and post what is the most pressing issue you have right now. This will introduce you to the community and get you started on the help you need right now.

https://www.whatnext.com/conditions/cancer/hodgkin-disease

There are also subtypes listed on this page to narrow down the type of cancer to match your dx.

Also, if you can take a few minutes and fill in some details of your journey so far, it will help others as they try to answer questions for you, it also helps others as they search through the data base to find someone like themselves. Confirming your email will allow you to receive updates and notices from the site when someone answers your questions or writes on your wall.

Thanks for being with us and let me know if I can help you find any information on the site. After you have an opportunity to look the site over and see what great things there are here, we encourage you to invite your friends, family or anyone you know that may be helped by the connections on WhatNext to join the site also. Just click this link to invite them to join. http://www.whatnext.com/recruit-a-friend

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GregP 3X Survivor

Hey Erik, welcome to the site, you are a 1 yr. longer survivor of Hodgkins than me! Congratulations! I was dx'd in 88 and again in 89. Let me know if I can help you find anything on the site, and please chime in on any of the questions you may have information for. We are glad to have you with us on the site.

Welcome to the WhatNext family! The WhatNext family is made up of people like you who are looking for help or looking to help others. To help you along your journey the WhatNext family has put together a Beginner's Guide to Cancer that I highly recommend you check-out here: http://bit.ly/10BQKCi. Also, please do not hesitate to reach out to others or ask for help.

Wishing you the best.

David
Founder, WhatNexter