Non-Hodgkin's Lymphoma? UPDATE

[Heavenly]

My DH was admitted to the hospital last night because he has had a fever and other symptoms for 3 weeks. They are going to be doing tons of tests. When I looked up his symptoms one of the things that kept popping up was non-Hodgkin's lymphoma but he said he didn't have any swollen lymph nodes so it couldn't be that. Also his white blood cells are normal and I thought they would be off if he had it. Well it turns out he has a swollen lymph node in his neck. And that lymphoma doesn't usually show in the blood work (the elevated white blood cell count would be more likely to be infection of leukemia). So now I am totally freaking out. Here are the symptoms that he has: swollen lymph node in neck, fever, unexplained weight loss (12 lbs in 21 days), weakness/tiredness, and soaking night sweats. That is almost all the symptoms of non-Hodgkin's lymphoma. Has anyone had any experience with this disease? Is there a high cure rate? Any info you can give me is appreciated! They are going to be doing a scan of the lymph node (and lots of other tests, they aren't focusing specifically on that) today so hopefully we will get some news.

[Mackenzie]

I hope you guys get some answers soon.

[SubliminalDarkness]

Night sweats are a characteristic lymphoma symptom.

My DH had non-Hodgkin's lymphoma last year, Large B Cell, to be specific.

He was having agonizing abdominal pains and diarrhea, and the night sweats. In his case, there was a large growth on his spleen that had "invaded" his colon.
He had a week of chemotherapy in the hospital, then six months of outpatient chemotherapy. The chemo was not enough to take care of it, so he then had 4 months of radiation.

Feel free to PM me if you want, either now, or if you do get a positive diagnosis of this, or any other cancer. It's all still fresh in mind, having only ended in the winter.

[DaughterOfKali]

Some of those symptoms remind me of Lyme disease.

I hope he gets answers/treatment soon.

[Strong Mama]

Wow I have been reading your posts about your DH, first thinking it was malaria or something now this. What a rollercoaster. I am so sorry. My cousin had NHL not sure which type but he has been in remission for 15 years now and doing great. I will keep you all in my prayers.

[onegirloneboy]

Just wanted to stop by and say I am praying for you and your DH. I hope you get answers soon!

[zoebird]

the answer will come soon, so try to stay open and positive until then.

no matter what, you are strong enough to handle what needs to be handled.

our thoughts and prayers are with you. *hugs*

[oiseau]

I just finished treatment for Hodgkin's lymphoma. The symptoms you listed (unexplained fever, tiredness, weight loss, especially drenching night sweats) are indeed symptoms of both Hodgkin's and non-Hodgkin's lymphoma (itching is another systemic symptom of Hodgkin's at least). They're also symptoms of a lot of other things though!

When I was diagnosed, all my blood work was perfect. I had a couple lumps on my neck that turned out to be swollen/cancerous lymph nodes. I also had a massive tumor in my chest that I had no idea about until they did a chest x-ray. We knew pretty much right away that it was lymphoma, but didn't know if it was Hodgkin's or not until after a biopsy.

If it is lymphoma, the prognosis is generally pretty good. The treatment sucks, there's no way around that, but compared to a lot of the people I met at my oncologist's office, it could be much worse. I did 6 months of chemo every other week plus 15 days of daily radiation, but I have a 90-95+% chance of it never coming back.

I know it's really stressful to be sick and not know what's wrong. Figuring out the correct diagnosis and starting treatment for whatever it is is really stressful. I'm sending lots of good wishes your way!! I hope it's not NHL, but if it is (or whatever it is), you guys will get through it!

Feel free to pm me if you have any questions. Also feel free to check out my blog atleastilikehats.blogspot.com. I was diagnosed around this time last year, so entries from Sept-Oct. 2009 talk about diagnosis stuff.

[Heavenly]

Thanks for all the input. Nothing has been concluded yet. They will be doing a full body scan tomorrow and more blood work. I am really hoping that it is something simple. I don't even want to think my husband could have cancer.

[Arduinna]

Those are all the symptoms I had when I was dx with hodgkins disease. It may not be that though, it could be something else. I know it's scary, but lymphoma is quite treatable with a high cure rate. I've been cancer free for over 10 years now after 6 months of chemo ( no radiation) and I was stage 3B.

[KatWrangler]

Any news?

[Heavenly]

Well supposedly they aren't worried about this anymore. They did an ultrasound of the lymph node and said it was fine. Is this the customary way of testing it? I am worried they are going to miss something. I would have preferred a biopsy to know 100%. Either way, they have closed the door on this diagnosis. I am thankful, but still slightly worried about it (and of course still worried about what in the world is actually is!)

[Arduinna]

I didn't have any ultrasounds as part of my dx. I was miss diagnosed 2x where they told me I had pneumonia when I knew I didn't because I'd had it before and this wasn't the same. I basically went back to the ER a couple days later and told them I wasn't getting better and they needed to find out why. I had another chest x-ray, and got the ER attending to talk to me and they admitted me to the hospital suspecting lymphoma. Then I had a cat scan and when that showed the swollen nodes in my chest, a bronchoscopy surgery so they could take one of the nodes for biopsy where they tested for the reed-sternberg cells and knew it was hodgkin and not non-hodgkins. Then I had yet another CT-scan to diagnose how far it had progressed.

If they closed the door on this, have they diagnosed what IS causing these symptoms?

I will say that even before I had any of those test they had assigned me a variety of Drs including a hematologist to find out what was wrong and he put me on prednisone saying that if that relieved my symptoms it was mostly likely lymphoma. It did, and it was.

[oiseau]

I had an ultrasound as the very first test in getting a diagnosis. I had a big lump on my neck sorta near my thyroid, so we started with a thyroid ultrasound. All we found out from that was that the lump wasn't associated with my thyroid. We were gonna go right to a ct scan from there, but my insurance didn't approve it right away, so I had a chest x-ray first which showed the big mass. I had the CT the following week to get a better view of what was going on in my neck and chest.

I hope they really have ruled out lymphoma, but if they decide to take a closer look at that swollen node, know that an excisional biopsy will give much better results/answers than a fine needle biopsy.

[oiseau]

Originally Posted by Arduinna

I didn't have any ultrasounds as part of my dx. I was miss diagnosed 2x where they told me I had pneumonia when I knew I didn't because I'd had it before and this wasn't the same. I basically went back to the ER a couple days later and told them I wasn't getting better and they needed to find out why. I had another chest x-ray, and got the ER attending to talk to me and they admitted me to the hospital suspecting lymphoma. Then I had a cat scan and when that showed the swollen nodes in my chest, a bronchoscopy surgery so they could take one of the nodes for biopsy where they tested for the reed-sternberg cells and knew it was hodgkin and not non-hodgkins. Then I had yet another CT-scan to diagnose how far it had progressed.

If they closed the door on this, have they diagnosed what IS causing these symptoms?

I will say that even before I had any of those test they had assigned me a variety of Drs including a hematologist to find out what was wrong and he put me on prednisone saying that if that relieved my symptoms it was mostly likely lymphoma. It did, and it was.

Also wanted to say hi to a fellow Hodgkin's survivor!

[teachma]

Originally Posted by Arduinna

I didn't have any ultrasounds as part of my dx. I was miss diagnosed 2x where they told me I had pneumonia when I knew I didn't because I'd had it before and this wasn't the same. I basically went back to the ER a couple days later and told them I wasn't getting better and they needed to find out why. I had another chest x-ray, and got the ER attending to talk to me and they admitted me to the hospital suspecting lymphoma. Then I had a cat scan and when that showed the swollen nodes in my chest, a bronchoscopy surgery so they could take one of the nodes for biopsy where they tested for the reed-sternberg cells and knew it was hodgkin and not non-hodgkins. Then I had yet another CT-scan to diagnose how far it had progressed.

This entire post is identical to my mom's experience, and she had the same dx. She, however, had no fever and no weight loss prior to dx; her only symptom was an endless cough that was misdiagnosed as allergies, then reflux. She had several biopsies of enlarged nodes which yielded NOTHING because apparently, the cancerous cells are not always easy to find. She had more than one bronchioscopic surgery before they could confirm the dx. She had stage 3 as well, and she's been fine for 7 yrs now.

[Arduinna]

Originally Posted by oiseau

Also wanted to say hi to a fellow Hodgkin's survivor!

It's always great to meet another survivor.

Originally Posted by teachma

This entire post is identical to my mom's experience, and she had the same dx. She, however, had no fever and no weight loss prior to dx; her only symptom was an endless cough that was misdiagnosed as allergies, then reflux. She had several biopsies of enlarged nodes which yielded NOTHING because apparently, the cancerous cells are not always easy to find. She had more than one bronchioscopic surgery before they could confirm the dx. She had stage 3 as well, and she's been fine for 7 yrs now.

Yes, the fever, night sweats and itchy skin are considered "B" symptoms and not everyone has those. I was getting 105 degree fevers which is a scary number to see. I'm glad that your mom has been cancer free for 7 years. It was very nice to finally reach the point where I was considered cured.

[Heavenly]

We got some news today. Not good news. They found a mass on Michael's spleen. That along with the enlarged lymph node in his neck (which they previously claimed was fine after ultrasound) point towards lymphoma. They will be doing a biopsy of both the lymph node and the spleen on Monday or Tuesday and also a bone marrow biopsy. Wednesday he is going to see the hematologist. It will take about a week to get the results. The longest week of our lives. He cried in my arms for an hour when they told us and now is being his usual positive self. He says we'll beat this and he'll be just fine. So at this point the odds of it not being lymphoma are not too high. Did anyone here that had it or knows someone who had it have spleen involvement? After doing research it seems I should be hoping it is Hodgkin's because it is more treatable. Being that he is male and 32 he does fit into the categories that usually get Hodgkin's. But I'm getting ahead of myself. Any more input or help is appreciated.

[oiseau]

Originally Posted by Heavenly

We got some news today. Not good news. They found a mass on Michael's spleen. That along with the enlarged lymph node in his neck (which they previously claimed was fine after ultrasound) point towards lymphoma. They will be doing a biopsy of both the lymph node and the spleen on Monday or Tuesday and also a bone marrow biopsy. Wednesday he is going to see the hematologist. It will take about a week to get the results. The longest week of our lives. He cried in my arms for an hour when they told us and now is being his usual positive self. He says we'll beat this and he'll be just fine. So at this point the odds of it not being lymphoma are not too high. Did anyone here that had it or knows someone who had it have spleen involvement? After doing research it seems I should be hoping it is Hodgkin's because it is more treatable. Being that he is male and 32 he does fit into the categories that usually get Hodgkin's. But I'm getting ahead of myself. Any more input or help is appreciated.

I'm so sorry to hear this update. Lots of *hugs* for you, your husband and your whole family. The diagnosis time is really really tough, but hopefully you will get everything sorted out quickly and get your husband on the road to getting better quickly!
I was in a similar situation where we knew there was a mass in my chest and we knew it was lymphoma, but we didn't know which type for another 2 weeks while we waited for the biopsy and it's results. Hodgkin's responds very well to treatment and has high survival rates. I don't know much about NHL, but I remember from my research last year that most types respond pretty well to treatment.

As for specific medical type advice, make sure you guys ask about some kind of sedation for the bone marrow biopsy. My first oncologist tried to do one on my in his office with just local anesthesia and it was awful (actually he missed--twice! So it wasn't an actual biopsy and it was still very panic inducing and painful). When I had my actual successful bone marrow biopsy in the hospital, I was given ativan and dilaudid in addition to the local anesthesia and it was heavenly. I was sore for awhile afterwards, but the actual procedure was a piece of cake. If they can do the bone marrow biopsy while he's out for the spleen/lymph node biopsy, that's even better!

I had a similar reaction to your husband. I took time to cry, but then put on a positive face. A positive attitude really helps a lot (as corny as that sounds). I just tried to find the humor in everything and it made things easier for me. There were tough moments, for sure, but being only 3 mo. out from the end of my treatment, it already feels like a long distant memory. Try to just focus on getting through the day (or even just through the hour on really bad days...) and eventually it'll be over.

I linked to my blog in my last post and you can kind a lot of information about my personal experience. I just peeked and I got my diagnosis around the beginning of Oct. last year, so you can read those entries about my experience with all the tests and stuff I went through when I first got diagnosed and while I was hospitalized. I also belong to a Leukemia/Lymphoma forum at lymphoma.com and there are a ton of knowledgable people there. The Leukemia & Lymphoma Society is also an awesome source of info (and financial support which I can tell you about if you get an actual diagnosis). If you or your husband want to email me, just send me a PM and I'll give you my personal email address.

My thoughts are with you both!

[SubliminalDarkness]

Originally Posted by Heavenly

We got some news today. Not good news. They found a mass on Michael's spleen. That along with the enlarged lymph node in his neck (which they previously claimed was fine after ultrasound) point towards lymphoma. They will be doing a biopsy of both the lymph node and the spleen on Monday or Tuesday and also a bone marrow biopsy. Wednesday he is going to see the hematologist. It will take about a week to get the results. The longest week of our lives. He cried in my arms for an hour when they told us and now is being his usual positive self. He says we'll beat this and he'll be just fine. So at this point the odds of it not being lymphoma are not too high. Did anyone here that had it or knows someone who had it have spleen involvement? After doing research it seems I should be hoping it is Hodgkin's because it is more treatable. Being that he is male and 32 he does fit into the categories that usually get Hodgkin's. But I'm getting ahead of myself. Any more input or help is appreciated.

I said above that my DH's was on his spleen, yes. There's mixed opinions on which type of lymphoma is easier to treat. My DH's was relatively speaking "easy."

My DH didn't fit the mold, either... 42, male, otherwise healthy.... It was very unsettling and surprising.

If you need anything, just ask.