Likely lymphoma, what to expect?

lindary said:

my diagnosis

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.

 

 

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

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 said:

Hi all!
Thank you very much

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

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

benrubinstein said:

Thanks for the info Max. It

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

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

benrubinstein said:

Hi all, here's an update. I

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!

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

benrubinstein said:

Hi all, here's another

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

Ben,

Usually, we guess right.

Glad this was one of those times !

max

.

benrubinstein said:

Hi all, here's another

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

Thanks for the update and good luck!