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Likely lymphoma, what to expect?

benrubinstein
Posts: 5
Joined: May 2015

Hello everyone!

I've found this great forum and I'd like to hear from the experiences of others to help me learn what to expect.

I'm a 29 year old male in otherwise very good health. Here's a brief timeline of where I am:

 

  • Feb 23rd, notice first lymph node, left side of groin.

  • March 20, notice first night sweats, about once a week. also notice dull pain in lymph node when walking or stretching.

  • April 3, first apt with doctor regarding lymph node, orders CAT scan and biopsy

  • April 6th, 2nd node emerges, hardened flat mass. same area as first.

  • April 10, CAT scan, doctor directs to get biopsy ASAP. Very difficult to get appointment.

  • April 12, night sweats 2-3x per week

  • April 15th, 2nd node now bigger than 1st, bulbous, size of small apricot. 1st is size of large grape. Larger lymph node become painful, sharp stinging pain. Not sure if due to chafing, but suspect not. Can’t sleep on left side or stomach.

  • April 27, talk to doctor, says “probably lymphoma,” is happy that surgeon is also oncologist

  • May 6, appt with oncologist/surgeon

 

Does this timeline sound similar to any others who have had Lymphoma? I'm meeting with the surgeon/oncologist on Wednesday, but as it's just a consultation he won't biopsy then, so I'm thinking I'm still at least 3 weeks out from a diagnosis.

 

Other than night sweats and the stinging sharp pain in the node, I feel fine and not sick at all. Based on your experience, and if it is lymphoma, would you rate this as catching it early? And would it be easier or harder than most to treat?

 

To complicate the matter, it looks like I've pretty much locked down a new job, which is a great career opportunity. If all goes well, I'm expecting to get a job offer next week. But I'd still be a couple weeks out from a formal diagnosis. I've been with my current job for 3 years so am elligible for FMLA there, but obviously not with the new job. If I do have chemo/radiation therapy, how much time does it consume? One ting the employees stressed in the interview process was how understanding the company was about family/health issues (this was unprompted by me) but I'm thinking as a brand new hire, the treatment I need might stretch that generosity past its limits.

 

I know this is very vague, but I appreciate any wisdom you can give me. Thanks!

-Ben

Anonymous user (not verified)

Ben

I have Stage IV follicular lymphoma which is an indolent strain Most common in people over 50. Mine came on much slower than yours. It is good that you did not mention fatigue. Its very difficult to know what to say without knowing what type, if any, of lymphoma you have. That can only be determined by a biopsy. At this point my advice would be to live your life like you are without cancer till you find out otherwise. 

Best of luck. I am sure others will chime in.

lindary's picture
lindary
Posts: 711
Joined: Mar 2015

I was diagnosis with NHL in Dec. Saw my PCP for regular 3 month checkup. Told her about some constipation I had previous month and she checked my abdomen. she found a large mass there. I had not pain or discomfort. The only other problems were being tired (thyroid?) and bloat. After several tests over about 3 weeks I was told follicular NHL. During this time it was also found I had pleurisy. This last resulted in a pleural catheter. My first chemo was early January this year. 

Looking back at how I was feeling earlier this year (tired and bloated) it may have started last spring.  I have had 1 CHOP and 5 R-CHOP treatments. Insurance had not approved Rituxan in time for the first round. I have 1 more R-CHOP treatment and then a Rituxan only treatment so it will be a total of 6 CHOP and 6 Rituxan. My Treatmeant now are about 6 hours for R-CHOP. The first R-CHOP took about 10 hours becuase of the expected reaction to the drug. They have to stop, give more Benedryl, wait, then satrt again, very slowly. I would say of the 6 hours about 2.5 is CHOP and the 3.5 is Rituxan. I normally take the day off from work.

Part of CHOP is 100 mg of Prednisone. I makes me kind of woosy so I work from home while taking it. Only because I odn't feel safe driving to work. By end of day I am ok. Then 24 hours after it is stopped there is the Pednisone crash where I  get very tired. 

Work summary for me is this: I get chemo once every 3 weeks. That is 15 work days. I am in the office 9 of those days. Six days I work from home and 1 day I take as vacation. I have a brother-in-law who had this about 10 years ago. I think his treatment may have been a little different. He said the only time he was off work was the treatment day. He would have gone to work but he could not make it to work on time once the treatment was over.

 

I hope tis helps some.

 

 

Sten's picture
Sten
Posts: 162
Joined: Apr 2013

Hi Ben,

I was diagnosed with lymphoma in my cerebellum in 2012. I am now 71. After tough chemo treatment I am NED (no evidence of disease).

Lymphoma is a severe disease and chemo treatment can affect you quite a bit.

I think that it would be wise not to change job right now.

What about telling the new company about the situation? Maybe they will say that they will wait for you to get better?

Good luck!

Sten

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Hello,

I agree with Sten and the others.  It's hard to comment because there are many forms of lymphoma.  I can tell you in my experience and my fathers.  I had a nonpainful swollen lymph node in my jaw.  It was growing and perhaps due to the location I could feel it grow, later on it did start to hurt.  Please don't mess with it my touching it (I did) you don't want to move any bad cells around.  At least four doctors had seen it, my family doctor, radiologist, obgyn and a ENT specialist.  I was always off the charts with good health and a healthy life style and it was discounted.

I was diagnosed one year ago with Follicular Non Hodgkin's Lymphoma stage IV. Grade one-two, incurable. I had four biopsies, cat and Petscans.  I traveled to Dana Farber Cancer Institute for a second opinion and treatment plan.  I recieved seven out of eight rituxin infusions and had an excellent result.

Three weeks after I was diagnosed my father was too.  He was very visably ill and rapidly declining. Late Stage Mantle Cell Non Hodgkin's Lymphoma.  Immediately went into treatment.  The chemo my father took (1 round of RChop) almost took him from me.  He is better but it took a horrible toll on his body and could have benefited from a second opinion.  We both have non Hodgkin's lymphoma but they are two different animals.

My cancer was missed for years, after my last PET scan (this past week) did we realize I had more than originally suspected.  Thankfully I had a good result.

 

Hope this helps and good luck

JoeCostello
Posts: 19
Joined: Apr 2015

I agree with Sten. If at all possible I would try to put the new job offer on hold until I was sure about my diagnosis. I am new to this too and am concerned how I will handle the chemo treatments. I understand it effects everyone differently. Some mild and some not so pleasant. I am somewhat conservative and the old saying "a bird in hand is worth 2 in the bush" has some validity here. You also need to consider insurance policy too. I don't know how a new employer and their insurance would handle a situation like this since the process has already started for the possible diagnosis. I know you could do a COBRA but that can be costly too.  Hopefully this is all for naught and it is something that can be cleared up with no problems.

Joe

benrubinstein
Posts: 5
Joined: May 2015

Hi all!

Thank you very much for the info. It gives me a great place to start.

Is it really possible to spread cancer by touching a node/tumor? I hadn't heard that before, and my doctor didn't warn me of it. Th ere's so much chaffing on it from clothing that I can't imagine how some small palpating changea nything.

As of this mornign I've had a nasty development. It appears that the bigger tumor, which chaffes the most, has a very small cut on it. And it's oozing a sticky white/yellow puss-like substance. Has anyone had this happen before with lymph nodes/tumors? I've put some paper towel in my underwear to catch it, but there's not much I think of to do other than that. I'm glad I'm seeing the specialist on Wednesday.

Thanks again!

-Ben

lindary's picture
lindary
Posts: 711
Joined: Mar 2015

I would not wait until wed. Get to the hospital/ER now!

Max Former Hodg...
Posts: 3696
Joined: May 2012

Ben,

We are all pretty much just guessing here at the moment. I have never heard of a cancerous node bursting before -- ever.  Also, the extremely rapid increase in size makes me think "infection," rather than lymphoma, but again, this is just an informed opinion, not a clinically informed fact. Of course, it is also totally possible to have lymphoma and an infected node at the same time.

It is premature to discuss how long treatments last. For some people it is a few months. Others who require "maintenance" therapy are treated for years, so there is no real "average."  But almost all of the 30-odd forms of lymphoma are very treatable.

Please do continue to update us.

 

max

benrubinstein
Posts: 5
Joined: May 2015

Thanks for the info Max. It definitely didn't "burst," but is more of a slow weep of puss. It hasn't changed in size at all.

I will call my general practitioner tomorrow AM and let him know of this change in status. I had major bloodwork done and went through a round of antibiotics, and both pointed to no infection, which makes this doubly strange. However, as to the other person's comments, this really doesn't seem to be cause to go to the ER immediately. Other than the obvious discomfort of a irritated & swollen lymph node, I don't feel ill at all.

Thanks again,

Ben

Anonymous user (not verified)

i have seen actual lymphoma tumors that have been removed. They were white and not runny. I agree with Max that this is suspicious for one of two things - an infection or you are scamming us. Its pretty unusual to use a full name as your username.

i wish you well and suggest you go immediately to a doctor. Something is not right here and you need to get it resolved. All my best wishes and good luck. But go to the doctor ASAP.

benrubinstein
Posts: 5
Joined: May 2015

Hi all, here's an update. I did get into my general practitioner yesterday. He said that the 2nd enlarged lymph node was indeed slightly infected, which is where the puss came from. Looking at the CAT scan he was able to verify that its a lymph node and not just a cyst or something similar. He said that due to its size and location, he wasn't surprised that chafing caused it to become infected. He didn't want to put me on antibiotics yet as I just finished a round 2 weeks ago which hadn't done anything to the lymph nodes. He said that if I developed any other symptoms, especially fever, to contact him and he'd reconsider.

On the other front, I'm pretty flabbergasted that you would acuse me of "scamming" you because I used my real name. What could I possibly have to gain? A few wasted minutes from cancer survivors to no benefit to me? But just in case your comment is making others wary of commenting, I'm also here: https://www.facebook.com/bjrubinstein and https://twitter.com/benrubinstein .

I'll let you all know what I learn from the surgeon/oncologist on Wednesday. Again, thanks for your input!

Rocquie's picture
Rocquie
Posts: 857
Joined: Mar 2013

I want to extend a belated welcome to the group and wish you well for your Oncologist Surgeon visit tomorrow. I hope things move ahead and you can get a diagnosis soon. I hope you do not have Lymphoma but if you do, please remember it is very treatable and some types are even curable.

Meanwhile, perhaps you can wear loose fitting clothing to cut back on chafing. 

Thank you for the update; I have been reading your posts and replies. I hope you will continue to update--you will find many caring people here.

Blessings,

Rocquie

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I was told my my oncologist not to mess with it.  

 

benrubinstein
Posts: 5
Joined: May 2015

Hi all, here's another update.

Since my last post I had a needle biopsy, which was negative, and last week I had a surgical biopsy, which so far has come back negative for lymphoma! Apparently it's the first thing pathology could tell, as infections take several weeks to culture. So at this point they think it is most likely a bacterial, viral, or fungal infection. However, the surgeon says that if all of that comes back negative, I'll be referred to an Infectious Diseases Specialist. So, still nothing conclusive, but it really seems like lymphoma is ruled out.

Thank you everyone for all your information and support! It's been much appreciated.

-Ben

Max Former Hodg...
Posts: 3696
Joined: May 2012

Ben,

Usually, we guess right.

Glad this was one of those times !

 

max

 

.

Anonymous user (not verified)

Very happy to hear no lymphoma! I would advise you get checked for toxoplasmosis, especially if you have ever been around cats.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Thanks for the update and good luck!

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