Time To Come Together On This

Hello everyone. My name is Candace and I have had LYP for 3 years now. I wasn't diagnosed until 1 year ago, and it was because it became non-hodgkin's lymphoma. I went through radiation and chemo and was guaranteed everything would go away. Sure enough it did, and my final PET scan after chemo came back clean and clear of all cancer and lesions from LYP.

4 months later, my bumps are coming back. My docs are talking about stem cell transplants, bone marrow transplants, and I think they're going a little overboard. I am desperately trying to get a second opinion at a research-based hospital but the red tape involved w/my insurance is making that impossible.

I am extremely frustrated, and would like there to be more action(s) taken on our behalves, regarding this horrible disease. Please, Please share with me what things have WORKED for your symptoms. I would very much like to write a book that will help people navigate their options. Doctors are too headstrong with what they think works, and are often wrong. We shouldn't have to be guinea pigs in trying to obtain the right methods of treatment. Not to mention the baloney insurance companies put us through. Thank you all for your efforts.
canncann28 canncann28
22-25, F
4 Responses May 6, 2012

Sorry to hear of your troubles, I have Lymphomatoid papulosis but was mis-diagnosed with Lymphoma as they found swellings on my lymph glands. I was nearly started on chemo but they decided to operate on me to find out which type of lymphoma i had. I have two very invasive procedures a few days before christmas last year. After christmas the doctors turned around and said that they could find no cancerous cells. It turned out I had another disease, sarcoidosis which caused the swollen lymph glands.<br />
They put me through hell and scared the life out of me and my family. I feel that whilst I understand that my case was confusing and complex they were too definate in their diagnosis. They never gave me any glimmer of hope and I only narrowly escaped being immediately started on six months chemo. I think you are right to seek a second opinion. Make sure you pin them down on every detail, I will never blindly trust my doctors again. I am still under the cancer units care because of the link between LYP and lymphoma but I will always trust my own judgement about my condition from now on. I feel for you as your case sounds very worrying and confusing but trust your own understanding of your body. The doctors do not know everything, especially when it comes to LYP.

Hi there, I have Lyp as well and have been actively going to the cancer treatment centre;however, I have not received treatment. I am still having breakouts and am concerned about my doctor's decision not to do treatment and instead monitor it. I have been having outbreaks on my back and often get pain and swelling in my neck or lumps in my armpits. Any thoughts?

Hi Candice,<br />
<br />
I am very sorry to hear of your struggles and that it did turn cancerous. I think that is one of my worst fears. I was diagnosed a little over 2 years ago. I would break out in hundreds of bumps at a time. They first tried doxycycline (didn't work), then I tried light treatments (it did help and they cleared). Before doing any other treatments, my husband and I decided to get pregnant, that is when my bumps were the worst, but my son was worth it! I started methotrexate(the pills) in January and I have been bump free for a while. They recently cut me back by one pill and I have had a few bumps appear again.<br />
I fully support you and your idea! I get the feeling that my doctors don't really care and just want to put me on meds instead of finding a cure. Isn't that what all drug companies want to do is put us on meds the rest of our lives so they make money. And yes insurance companies are a joke. The reason I had to quit light treatments was because of the cost, I simply couldn't afford $400-500 a month.<br />
<br />
Good luck and I am here to support and bring light to this disease anyway I can.<br />
<br />
Corina

i also have lyp. i know what you mean about being a guinea pig because i have had over 12 doctors and tried every treatment option. what works best on me is methotrexate(the pills). i hope that whatever you do works out. <br />
p.s. if you write a book i will definitley buy it<br />
-Allison

Dear Candace <br />
<br />
I dont have LP but my sister does. The little i Know is about Good doctors in the usa. Where are You from? <br />
I think Your idea of coming together on This is briliant. We support You ! tell us how! <br />
Best of luck !!!<br />
<br />
Fredy