Hodgkins Lymphoma, How long can you have it?

[xmelax35]

How long can a person have Hodgkins Lymphoma w/o knowing it? Or How long can a person survive having it w/o diagnosis. For instance, I heard there is some cancers a person can have for many years (like 10) before being diagnosed or knowing.

I don't know what one woman had, what type of cancer, but my husband told me of a lady who went on vacation and she was fine (or so she said or didn't complain) and then she suddenly passed away while I'm vacation here she had stage 4 of some kind of cancer. She had apparently had it for a long time and didn't know it.

Anyway, I'm having symptoms that mimic a type of Hodgkins and I am NOT paranoid. My doctor is on vacation, but she is working on answers. Cancer runs in my family big time. In addition to the symptoms of it, I have a swollen lymph node in my groin area that everyone is concerned about, but no one knows yet what is going on. I think she is going to send me to a hematologist. That's what I wanted my last doc to do, but he refused to send me. Instead he said he could run the tests, which were a regular cbc each time. I did have abnormal results but he did them every 2 weeks until they were somewhat normal. He did it due to my symptoms. I lost 38 pounds in 2 months then it ended up being 40 lbs. I have bad sweating at night time, occasionally a temp that is mostly at night, vomiting, nose bleeds, pain and much more. It's bad enough that I literally have head to foot issues (diagnosed problems).

****Oh and I've Never been a drinker, but once in a blue moon I liked a drink. Discovered recently that I cannot tolerate any alcohol anymore. I tried a drink and I didn't even have it all and I had severe pain in my neck and shoulder. I thought it was just a coincidence. So a few weeks later I tried again and the same thing to the point of tears. My husband rubbing my neck and shoulder didn't help. Took a little while to go away.****

I thought it was no big deal. My husband says it is not normal and he thinks it is important to mention that to my doctor. I figure that there are probably a lot of ppl who get that. He says probably not that many people. So he made me just message my doctor about it. He said it might help her with what is going on with me.

Any answers would be very much appreciated.

[shellysexbomb]

I iimagine you will get referred to a hematologist. They are the people that can give you a definitive answer. No doubt you have googled those symptoms and they all fit, but also could be lots of other things. I am going down the same road but have had abnormal white cells comfirmed as lymphopriferative disorder which basically means one of the blood malignancies. Just waiting now to find out which one. Good luck and post updates as its really frustrating to read half a story :)

[xmelax35]

My doctor, well, actually she's a Nurse Practitioner, keeps doing the same tests over again. Once again, my NRBC number was there. Plus, since I originally posted, I now have 2 more lymph nodes. One is really big. 2 other physicians confirmed all are enlarged lymph nodes. My NP originally said she was going to send me to a hematologist, but now she's not going to. I read today that the only sure diagnosis is a biopsy of a lymph node. I read that normal blood tests are not a diagnosis. I don't know where to go from here. I am NOT  depressed...but I am tired a lot, well all the time. I don't feel well at all. I took some night time cold med that had alcohol in it (I didn't realize it at first), bc I thought I was getting sick....turns out I wasn't...just weird temp symptoms for a day. Anyway, I started hurting in my neck, shoulder & some upper portion of my back again (close to my shoulder). That is when I realized it had alcohol in it. So that was weird.

I just don't know what to do. I just found out that my friend's mother went to the same NP & she kept telling her mom that her symptoms was prob get thyroid & put her on thyroid med. She told her that her CBC blood work was fine. Well, she was getting worse. Well they (her daughters & her) decided for her to go to another physician at the same place. He sent her for more in depth testing & to a hematologist. Turns out she had cancer. They said she had prob had it for quite some time. It really spread too. She had a rare form though, id cancer. Anyway, now it's so far along that she is leaving it in God's hands. My heart aches for her.

Also, she was taken off the thyroid med & other meds.

One more thing: I'm still getting nose bleeds. I know that has nothing to do with most cancers. I do not have dry nose & I don't dig in there, lol. Not only does it really run out my nose but I feel it going down my throat & I can taste it.


I'm at a loss of where to turn. I just want to feel better!! Shelly, I hope you find answers soon too!!

[Ken_PA]

Hi, again. First off, let's take care of the easy thing: that "friend" is a loon :)  To insist that there are no nerves in the back is unbelievable, along with the rest of her behavior.

Next, to the vertebral hemangioma. You are correct that since it's inside the spine, it can't be felt. An ER is a good place for heart attacks and accidents and problems like that, but it's not a good place at all to deal with unusual conditions like yours.

The hematologist might want you to have a bone marrow biopsy. Whatever is causing your swollen lymph nodes might also be affecting your bone marrow which is where blood cells are manufactured. If red blood cells are low, sometimes the body compensates by arranging to make blood cells in other places besides the marrow. (That's called extramedullary hematopoiesis.)

A hemangioma can sometimes also use up the platelets that you need for clotting, so that can make you low on platelets and make you have nosebleeds. That's rare, but it is possible.

You are absolutely correct that you have to be your own advocate, because what you have is unusual. Good luck with your hematologist visit. Hopefully, you'll get the tests you need and eventually get a diagnosis.

[Ken_PA]

Your hemangioma might be where your NRBCs are being made.

[xmelax35]

P.s.s. regarding my "friend" (see my last comment at the end about her): I had told her one day about the vertebral hemeiagomia & how a doctor told me that it was probably on a nerve. She got on my case basically saying I was making that up and then pretty much calling the doctor a liar. She said that you DO NOT have nerves back there!! She said you do not have nerves in your upper back or any that run from your back to your arm. No nerves period. She said that you do in your sciatic area but not your upper back. I said yes there are, he told me there were. She did this look she gets when she thinks she is right about everything and that you are lying and said, "no, no there's not". There was someone else sitting there when she said that. The lady looked afraid to say anything. She looked as if she wanted to stick up for me though. Recently I told a PA about that & they said that you have nerves all through your body and yes, there are nerves that run along there.

I'm telling you that girl did this thing where she thinks you are lying & making something up. Then when you insist that you are not and a doctor told you this, then she says they are lying and making it up. You know, because she apparently went to medical school & knows more than them. And she has switched bodies with me and knows what I am or am not feeling. (Sense my sarcasm there). She just went on to keep saying you don't have nerves in your upper part of your body!! Just that sciatic area. I played dumb and just went along with her, saying, "oh you don't? Oh wow! That doctor must have lied to me." She again did this look and noise like it wasn't the doctor that it was me making that up. Maybe she was thinking both me & the doctor were lying.

I told her I was diagnosed with something and she thought I was lying and making it up. Then when I said I could show her my paperwork, she said it was no big deal that many people have it.

[xmelax35]

Hi again. I haven't been feeling well as usual & haven't got on here for awhile. I seem to be really tired a lot, but I am NOT depressed. I just thought I'd throw that out there. Thank you for your replies to me. My husband went to her and told her again about me & what I am going through. He mentioned that number the NRBC to her  (the NP). She didn't know what it was. She asked him. He mumbled something to her as she was leaving the room & she told him that she heard him. She wasn't going to send me to the hemotologist. However, after 2 weeks, I called my insurance company and they set it up that I could have a temporary referral from them.

When I called the hemotologist/ oncologist office they told me that my NP sent a referral over for me!!! I was shocked. Especially after she was not going to do anything for me. (I had already have the hemotologist a letter asking for help and explaining what I've been going through. I said that of any doctors out there, I believe that he can find out what is going on with me).

Anyway, my appointment is on the 18th.

Now this is way out there and it has nothing to do with lymphoma or with all this....well it sort of does. But, I have been getting very bad neck and head pain at the base of my skull and it goes up my head (the side to the front). I also have had this pain that is recurrent in my thoracic area. It has been a long time since I had a MRI of that area, but I was told that it was a vertebral hemeiagomia (however it is spelled). The last time it was measured at 3 cm. It hurts quite often very badly and the pain goes down my shoulder down my arm. One doctor told me that it was probably pressing on the nerve. I know it's there and it's never gone away, but one ER doctor slightly touched my back and said I don't feel one there's no reason to have a CT scan. I argued with her that I know it's there and it's inside it's not on the outside. Anyway, I wondered if either of these things with my neck and head or that hemiogomia could possibly have anything to do with my swollen lymph nodes and all my other symptoms?

Could they cause all my symptoms and cause swollen lymph nodes. By the way, my lymph nodes are hard. I don't know if that makes a difference.

P.s. one last thing: I was confiding and a "friend" and the friend told me to not worry about any of it or my symptoms. She said that I have nothing wrong with me. Pretty much she's trying to imply that it's all in my head. Even though she doesn't see me on a daily basis. She told me to live life and go on and not worry about it. Pretty much telling me not to go to a doctor. It's one of those people that everything is wrong with them but nothing is wrong with anyone else. She said she's worried about me. She's worried about me in the sense that she's worried that I'm making all this up and I'm going to let it ruin my life and not keep on going on and that I won't just ignore it. She kept telling me over and over to stay off the internet. Well I'm sorry to say but there are many people out there who figured out what was wrong with them or another person by looking on the internet. They are able to tell a doctor what they found and then the doctor looked into it and found out what they had. Sometimes we have to be our own Advocate and look these things up. I am not a hypochondriac and I am not making these things up. My husband has seen first-hand what I've gone through. My symptoms are real.

[Ken_PA]

As for the NRBCs:

The RBCs are the Red Blood Cells that carry oxygen throughout the body. If RBCs are low, then the person feels tired all the time.

Then we have the NRBCs which means Nucleated RBCs. Think of those as immature RBCs. There should hardly be any. But when the adult RBCs are getting destroyed then the immature ones get rushed into duty.

You need a hematologist. I'd also stop seeing that NP.

[Ken_PA]

Hi again, xmelax35.

If your platelets are normal, then we move to the next step: you might be low in what are called "clotting factors" which are proteins made in the liver. So you should have the basic liver tests.

Or it might be that your platelet numbers are normal but the platelet *function* is low. It's as if they are lazy and don't clot as they should.

Or are you taking a lot of blood thinners? Aspirin, fish oil? Ibuprofen? Vitamin E? Herbs?

[Ken_PA]

Alcohol dilates blood vessels. You have unexplained inflammation in various places, and the alcohol is likely making the swelling/inflammation in those places temporarily worse.

Did any doc mention cellulitis?

[xmelax35]

No, my mom has cellulitis. She went to the doctor last week and she is on a high dose of antibiotics.

[xmelax35]

I had some of my numbers written down, but platelets weren't one of them, so they were probably on the normal side. Lately I've had many blood and urine tests. One thing I remember though is how my platelets went from being high to in a lower number, but normal at one point lately. I think it was like 200.

A number I had written down was a NRBC number from my recent test. It said .10. Idk why I had that number written down. I'm still trying to figure out what it is. I also have written down rbc, urine. I don't feel like I have a urinary tract infection, so that's weird.

[xmelax35]

Right about the symptoms being all over. Only one lump and I was told by some physicians that it was a swollen lymph node. It feels like there is a swollen area on the back behind my ear. And there is swelling on the lower part of the back of my head. My old physician said it was likely just swelling, a knot and probably nothing to worry about. I'll have to look up my platelets. 3 times they were very high, above the normal level.

[Ken_PA]

Hi, let's start with one small question about the nose bleeds. In a lymphoma, bleeding happens because the number of platelets are low. What are your platelet numbers on your CBCs?

Generally, a person can have a lymphoma for a long time wthout knowing *if* it is slow growing and if there are no symptoms. At this point, that doesn't sound like you.

Your husband is right, the pain from alcohol should be told to any doctor you see -- and most especially you should say that the pain was bad enough to bring tears. That is not usual at all, not by a long shot.

[Ken_PA]

Clarifying: you seem to have synptoms all over, but not bumps all over.

[xmelax35]

P.s.s. One very last think, I think, ha ha: I need to mention b4 anyone asks or mentions it, that I have had an HIV test, even though I was sure I didn't have it. I've been with my husband for 16 years and before him it had been almost 3 yrs b4 I had been with my son's father.

Anyway, I am definitely negative for it or anything related to it. My test results are negative.

[xmelax35]

P.s. I'm sure I don't have any kind of cancer, but I still wondered about how long a person can have lymphoma  (like Hodgkins) for w/o diagnosis and etc...see above for my exact question. I'm sick of being sick!!