Non-Hodgkin's Lymphoma? UPDATE - Mothering Forums

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#1 of 27 Old 09-09-2010, 12:38 PM - Thread Starter
 
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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.

Shawna, married to Michael, mommy to Elijah 1/18/01, Olivia 11/9/02, and Eliana 1/22/06
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#2 of 27 Old 09-09-2010, 12:40 PM
 
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I hope you guys get some answers soon.

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#3 of 27 Old 09-09-2010, 03:08 PM
 
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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.
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#4 of 27 Old 09-09-2010, 03:33 PM
 
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Some of those symptoms remind me of Lyme disease.

I hope he gets answers/treatment soon.

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#5 of 27 Old 09-09-2010, 04:40 PM
 
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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.

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#6 of 27 Old 09-09-2010, 05:35 PM
 
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Just wanted to stop by and say I am praying for you and your DH. I hope you get answers soon!
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#7 of 27 Old 09-09-2010, 07:30 PM
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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*
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#8 of 27 Old 09-09-2010, 08:20 PM
 
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#9 of 27 Old 09-09-2010, 10:50 PM - Thread Starter
 
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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.

Shawna, married to Michael, mommy to Elijah 1/18/01, Olivia 11/9/02, and Eliana 1/22/06
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#10 of 27 Old 09-10-2010, 11:37 AM
 
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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.
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#11 of 27 Old 09-10-2010, 02:46 PM
 
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Any news?


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#12 of 27 Old 09-10-2010, 03:01 PM - Thread Starter
 
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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!)

Shawna, married to Michael, mommy to Elijah 1/18/01, Olivia 11/9/02, and Eliana 1/22/06
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#13 of 27 Old 09-10-2010, 04:43 PM
 
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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.
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#14 of 27 Old 09-10-2010, 05:58 PM
 
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#15 of 27 Old 09-10-2010, 06:00 PM
 
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#16 of 27 Old 09-10-2010, 08:16 PM
 
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Quote:
Originally Posted by Arduinna View Post
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.
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#17 of 27 Old 09-10-2010, 10:23 PM
 
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Originally Posted by oiseau View Post
Also wanted to say hi to a fellow Hodgkin's survivor!
It's always great to meet another survivor.

Quote:
Originally Posted by teachma View Post
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.
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#18 of 27 Old 09-11-2010, 07:39 PM - Thread Starter
 
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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.

Shawna, married to Michael, mommy to Elijah 1/18/01, Olivia 11/9/02, and Eliana 1/22/06
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#19 of 27 Old 09-11-2010, 08:06 PM
 
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#20 of 27 Old 09-11-2010, 08:17 PM
 
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Quote:
Originally Posted by Heavenly View Post
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.
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#21 of 27 Old 09-11-2010, 10:17 PM
 
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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.
Yes I had spleen involvement. My lymph node involvement was on both sides of my diaphragm but mostly in my chest with lesions on my spleen and I had the B symptoms of fevers, night sweats, itchy skin. I ended up being stage 3B and had ABVD chemo once every 2 weeks for 6 months. My Dr gave me a 30% chance, but I was determined to beat it. When I had my first cat scan after starting treatment ( IIRC I'd had 2-3 treatments at that point) I only had 1 lymph node left that was enlarged, the rest had already cleared. So even though it was a poor prognosis, I responded really well.

I know a few other people that have had hodgkins, they are all men and all survived. I'll be praying for you guys. I know it's fightening, but like everyone told me, if you are going to get cancer, this is the one to get because it is very curable.
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#22 of 27 Old 09-12-2010, 11:22 AM
 
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Information is so important, so even though the wait will be excruciating, hang in there. It's a means to an end. My neighbor is a cured Hodgkin's patient after two recurrences, she did it all. She speaks reverently about her oncologist at Sloan. If you have any thoughts of going there, PM me and I will send you her contact info and my friend's name to use as a referral. Good luck!

--Karen, mom to a super girl (and a sweet cat), wife of a great husband, proud public school teacher. Fortunate to have a wonderful life!
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#23 of 27 Old 09-12-2010, 11:16 PM
 
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I don't have any experience, but I just wanted to offer some support. I know this must be such a scary time for you guys.

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#24 of 27 Old 09-13-2010, 08:55 PM
 
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Best wishes for your family. I hope you get the best possible outcome.

Just to add to the positive stories, I had a friend in college who had Hodgkin's and he is still cancer-free, 25 years later.
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#25 of 27 Old 09-14-2010, 05:34 AM
 
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I will keep y'all in my prayers.

I cannot imagine how worried you must be.

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#26 of 27 Old 09-16-2010, 08:03 PM
 
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How are you guys doing?
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#27 of 27 Old 09-17-2010, 06:58 PM - Thread Starter
 
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Just waiting. He is home from the hospital and he is sore from the biopsy. They said 2-3 weeks until we get the results from the bone marrow biopsy. They are not going to biopsy anything else until they see what the bone marrow says. He is actually doing better, the fevers are much lower. We are really hoping the biopsy will show that this is not cancer.

Shawna, married to Michael, mommy to Elijah 1/18/01, Olivia 11/9/02, and Eliana 1/22/06
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