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Current Active Duty and recently diagnosed with Nodular Sclerosis Hodgkins Lymphome

Sevastra
Posts: 1
Joined: Mar 2012

I was recently diagnosed with Stage III BS Hodkins Lymphoma. It is pretty serious and has me worried I know the out come is good but I am a healthy in shape young male that never in my life would think I would be going thourgh this. A civilian hospital found a mass in my lungs by CT scan back in December around the Holidays I was transfered and admitted to Protsmouth Naval Hospital. They did the needle biopsy of the mass came back and said it was a good sample and we should know something soon. The very next day they came back and said the sample was not good enough so I had to get cut opened to remove a better piece of the mass. Again was told a good sample and would know something soon. Eventually they said that it was nothing and not cancer called it a Thymus Mass. They failed to mention all the the lymphnodes that were going crazy and had been infected or inflammed. That all happened from December 13-23 of December.

That was back in December and I was given a clean bill of health was a load off my shoulders and they had made me feel this was away. Jump forward to the end of January the 23rd to the 31st. I woke up with a horrible pain thought nothing of it.I treated it as I had slept on my neck wrong thats what it felt like took NSAIDS and muscle relaxer and no help. The next morning at 0300 I woke up and my lymphnodes were swollen to the size of an extra large egg. Went to another civilian hospital because something did not seem right and the military was dicking me around. They took another CT Scan this time they counted the lymphnodes inflamed infected and I was transfered again to Portsmouth. I was rushed into emergency surgery to removed the lymphnodes and they were only able to get one out. Well after a million people looking up my slides military, civilians, and the worlds Hodgkins expert to come with a proper diagnosis for it.

I started round two of chemo today and it sucks but have no real options of what to do other then nothing and die. I ran into the throasic surgeon leaving today and he told me that he is really distured that he has been seeing a lot of cases of lymphoma lately and I am starting to think this is not a coinedence what have we been given or exposed to and cause this. I dunno I just wanted to reach out and see if anyone else has been through a similar situation.

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Sevastra,
I have been on this board almost 2 years now and was diagnosed with NHL stage 4 with no symtoms. I looked up every type I could find on those websites. They are enough to scare the crap out of you. In the past 6 months I have been seeing more and more names for different types of Lymphoma. I do not know where they are getting these names from. It has gotten to the place I do not know how to answer other members anymore. We get new members all the time and a lot of them pop up with something new I have never heard of before. Maybe why the Dr. said he is seeing more and more cases of Lymphoma.I shouldn't say this but I feel like at times somebody at the medical office is yanking these names out of their butt. I am not trying to be funny. I am sure some of the older members would agree with what I am saying.Another thing is people go to the hospital to get diagnosed by so called professionals and look what happens. These yahoos are supposed to know what they are doing. Most of them think they are Gods in the first place,when in the real world they couldn't diagnose a splinter. Hated to post with this being your first response,but I just wanted to get that out in the open.Anyway I am sure some will reply ,but to be honest I have never heard of this diagnoses. Stay away from the websites because they will scare the heck out of you. I know it is rough to do,but try to be positive and you will get support here. Oh,I should have said Welcome first,but reading your post got my blood boiling a little. John

miss maggie
Posts: 929
Joined: Mar 2010

Dear John,

Hello, How are you doing? I haven't been able to post to you in awhile. Hopefully,
you know I haven't forgotten you and all others.

Anyway, I agree with your post. I have noticed there have been new DX's on this site.
I am not sure why. Perhaps, the latest posts are more detailed in their explanation
of their DX? Or is this something new, and more to worry about?

Stay well and healthy. Love Maggie

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Maggie,
I am doing good. I hope you are feeling better. I know people get busy with there lives and time slips away from them at times. It does seem so many others have just given up on us and never check back in. Thats the only way we have to know how they are doing. I know everybody thinks about the old posters and their progress. I know I do. When I saw this post I just had to respond the way I did.I am sure the same thoughts have gone thru the older members heads as well. The newbies are not aware that these new names are popping up all the time. I check the board everyday and sometimes even more, but more and more I am finding I do not know how to answer them.I find myself going back to the old websites and looking up what their diagnosis is. A lot of times there is no website. I hate going to those sites to begin with because they scare the dickens out of you. Take care and I will be talking to you in the future. John

miss maggie
Posts: 929
Joined: Mar 2010

Dear John,

It makes me so happy when my friends on this site are doing well. It does break
my heart, when others are still having difficulty. Hopefully for them, and I do
believe, eventually everything will work out.

I have always checked this site as you have daily. I did stray for awhile. I could
never, never not return to see how my friends are doing. I am here for the long
haul.

Love all you guys. Love Maggie

nikkig43
Posts: 73
Joined: Feb 2012

I'm so sorry that you have to go through this, and that it has taken so much time, pain and suffering to get diagnosed. My husband has Non Hodgkins lymphoma. He had symptoms for months before finally going to the doctor. He just finished his 2nd chemo last week and he's doing well.
My advice to you is to ask a lot of questions. Be informed and ask what your options are. Also, try to keep your life as normal as possible. I hope you have a good support system. Try to think positively. You are young and strong. Lymphoma is curable. Your treatment has started, so you are on your way to recovery!!
I will pray for a speedy cure.
Take care, Nikki.

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Hi Sevastra,
Welcome to the group, and also "Thank You" for serving our country. What branch of the service are you currently active with? My youngest son joined the Marine Corp straight out of high school in 98 and by the grace of God was able to serve all of his duty here in the states at the MCRD in San Diego..(M.P). I'm so sorry to hear you went through so much before getting a proper diagnosis. Seems this is not uncommon, which we have heard from more than one of our members in the group. A watch and wait approach is often used with the indolent types of Lymphoma, but with the more aggressive types, if misdiagnosed, this approach can be troublesome. I'm glad you are now receiving treatment as this will get you to remission(knock on wood)sooner, and back to living somewhat of a normal life again. I don't think our lives will ever be totally normal again once we are diagnosed with cancer, but we do learn to deal with the cards we've been given and start living with our "new normal". I have Follicular NHL-stage3-typeA-grade2-diagnosed in June 2010. I've completed chemo..(Dec 2010) and currently doing the 2 year Rituxan maint,(once every other month)since Feb of 2011. So far, so good for me with few complaints. Please reach out when ever you need to.... someone will always be here to help out. Good luck with your treatments. Best wishes Sue. (age 61)

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

I ditto what Sue said, welcome and thank you for serving our country.
I too had a "miss diagnosis" but mine was on the operating table which lead to unnessary surgical resection resulting in a paralyzed voacal cord and diaphragm. When the biopsy was sent out to 3 different labs, it changed from thymoma to Hodgkins Disease, this was in 1989. I'm wondering if the Reed-Sternberg cells, found in a HL biopsy are hard to distinguish.
I know Sue mentioned watch and wait as an option for lymphoma but I'm pretty sure, all Hodgkins Disease (or as the current term is now Hodgkins Lymphoma) must be treated promptly, there is no option regardless of stage.
Best wishes with your treatment and I hope you have a speedy recovery.
Cathy

anliperez915's picture
anliperez915
Posts: 751
Joined: Sep 2011

Hi Sevastra, I was diagnosed with Splenic Marginal Zone Lymphoma stage 4, with tumor in spleen, liver and bone marrow involvement. I was also misdiagnosed at the beginning I was told I had Follicular NHL, then I changed Oncologist and my new Oncologist said it was SMZL. My Onc also mentioned to me on my last visit that he's been seeing more and more cases of rare lymphomas. He wants to document my case, since he has seen four cases of my lymphoma in less than a year. I hope you're doing well in your treatment. Wish you all the best, Take care

Sincerely,
Liz

andreasny53
Posts: 3
Joined: Feb 2010

Hi just wanted you to know that i too was treated at Portmouth 18 years ago for NHL. In the old, old hospital. Chemo was really bad and I'm sure Dr Croslin has retired but I survived. My husband is Retired Army now but back then we drove down weekly from Eustis. I was 37 years old when diagnosed. It was 5 months before I could get a doc to biopsy my golf ball sized lymph node, but after that I was rushed into Chemo. The nausea drugs also sucked back then,I lost 50 pounds in 13 weeks. chemo was every week. Still hate Thursdays, my chemo day. Treatment has really improved and I hope your feeling ok. Just wanted you to know survival is posssible and even probable.

hijenist's picture
hijenist
Posts: 6
Joined: Jan 2012

Hi,

You didn't mention how old you are, or what your active duty job is. I am Air Guard, but was on AD orders for 3 months in Biloxi in 2010. My symptoms started a few months after getting home. I truly believe my NHL has something to do with the dorms we were staying in, as they were supposed to be condemned after Katrina. My oncologist says that there is no way to tie this together. I have asked if there is a study as to what kind of cancer is diagnosed in each year in each state, and he said there is a cancer bank of info, but it isn't for public knowledge. The problem with that, is if I got cancer from an AD duty base out of state, and am in a different state now it wouldn't link. I am now 35 years old, and had my last chemo 6 months ago. I am feeling really good, and just trying to get my fitness regimen back to pass my PT :) I know you are in a scary place right now, but you can make yourself crazy questioning and wondering about your cancer. As I'm sure you know, being AD, keep records of everything. I had a journal that I kept from beginning to end in case I ever needed to reference back. You don't think you'll ever forget, but you do after a time. Good luck!

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