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Old 05-20-2007, 06:33 AM   #1
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Susey HB User
non hodgkins lymphoma new diagnosis

Hi -
11 days ago I was diagnosed with NHL. I am 43 years old. I am having a lot of trouble dealing with it. The thing that scares me the most is that the dr said there is not a cure. This Thursday I am having a bone marrow biopsy where they take a little of the bone. Has anyone had this done and how painful is it? Any advise on how to stop thinking about this 24/7 and enjoy now and being with my family.
Thank you,
Susan

 
Old 05-20-2007, 07:05 AM   #2
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Re: non hodgkins lymphoma new diagnosis

I am sorry to hear about your diagnosis and can imagine how you are feeling. I hope I can encourage you though. Even though your lymphoma may be incurable, it is treatable and with new treatments becoming available all the time, many people have long remissions between treatments.

I had my bone marrow biopsy under sedation so of course I felt no pain. Some people say it is painful...others say it is not too bad at all. It does not take long though, so that is good! They actually take some of the marrow, I believe which is the tissue in the bone cavity. It will be over before you know it!

With some lymphomas, oncologists suggesta watch and wait approach rather than giving treatment right away so do post back when you have your bone marrow results and know what the treatment plan is. Post back too if you have any more questions and we will be glad to help and encourage if we can.
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Husband dx July 2003, advanced rectal cancer stage 111C; myself dx July 2006 indolent lymphoma; husband dx February 2010, stage 2 prostate cancer.

 
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Old 05-20-2007, 01:50 PM   #3
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Re: non hodgkins lymphoma new diagnosis

Susey,

I'm very sorry about this news. I am sure you are so overwhelmed at the moment. I do know that this board offers a lot of support and knowledge. Keep posting with questions, etc and you will receive information.
What were your symptoms and how long did you have them?

Deb

 
Old 05-20-2007, 08:17 PM   #4
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Re: non hodgkins lymphoma new diagnosis

I ended up getting parvo virus (fifth disease). My blood test showed my blood counts down, I had a rash on my legs, swollen ankles & hands. Very achy joints, fever of around 102 that wasn't going away and swollen lymph nodes on my neck, under arms and groin area. I was itchy all over for a few days. I also was nauseaous all the time. My doctor kept doing blood tests and my levels were staying low so he sent me to a hematologist. I was told they were sure it was just due to the virus but were being cautious and would do the needle biopsy to be sure. The day before we got the results (from the needle biopsy) the hematologist still thought this was a virus. I was shocked when my family doctor called my husband to tell him I have lymphoma. After getting the diagnosis of lymphoma I went to the hematologist and they discussed this with me. They think it is low grade lymphoma and are doing a bone marrow test to stage it. He thinks it is grade IV and is thinking it is probably in the bone marrow.
The unknown stuff is hard because I am not sure if I will be treated or if it will be watchful waiting.
The symptoms have mostly gone away 6 or 7 days ago. I just have the swollen lymph nodes at this point.
Once I get the info from this doctor I am either going to Dana Farber in Boston or Massachusetts General for a second opinion. I live in Vermont and am getting my first opinion from Fletcher Allen.

 
Old 11-23-2007, 07:41 PM   #5
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Re: non hodgkins lymphoma new diagnosis

Dear Susey,

I wrote last month about my Dad. He is in stage IV w/ lymphoma in his bone marrow and a swallon lymph node in his shoulder (so deep and close to main arterie that cant do biopsy on it). Anyways he was started on chemo last month. He has had 2 treatments and 4 more to go every 3 weeks. Mom & Dad did their first real talk w/ the cancer specialest last week and that is when they found out it was stage IV. They told them if the heavy doses of chemo doesn't get it the next step is a bone marrow transplant. He had a port put in, that is a little uncomfortable but what really hurt him was the bone marrow biopsy. I don't know if any of this info will help you and what you may have to deal with.
Me and my Mom had a hard time debating wheather it was better to know how bad the cancer is or not knowing and just doing as the dr. says. I talked he into asking the dr. and I think it put more fright into her and my father, it for sure did me.
God luck and hope you get good news.

Jodi

 
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