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Sjogrens Topics => Living With Sjogren's => Topic started by: jackieinnj on April 30, 2008, 06:15:27 AM

Title: Sjogren's and Lymphoma
Post by: jackieinnj on April 30, 2008, 06:15:27 AM
Hello all,
Perhaps my initial question would be to the moderators of this forum.  Is it possible to create another section for "Lymphoma" in addition to the other categories?  According to my doctors, as well as what I've read in the Sjogren's Syndrome Foundation literature, Lymphoma is a real concern for Sjogren's patients.  According to the SSF flyer:

"Sjogren's syndrome is serious but generally not fatal if complications are diagnosed and treated early.  Sjogren's syndrome patients must be monitored carefully for development of internal organ involvement, related autoimmune diseases, and other serious complications.  In particular, patients should be aware that the incidence of lymphomas (cancer of the lymph glands) is significantly higher in people with Sjogren's compared to the general population."

I just thought perhaps a new section could be considered for members to share experiences, etc. relating to Lymphoma. 

There is information I received from my oncologist recently that I'm wondering if anyone else has heard of this research.  My doctor tells me that research has been done where a lymph node is taken from a Sjogren's patient and biopsied.  Then, years later when the Sjogren's patient has developed Lymphoma, another lymph node is taken and biopsied.  The results show that both lymph nodes have the same characteristics which some researchers/physicians believe Sjogren's is a Lymphoma - an indolent form of Lymphoma.

I found this very interesting and plan to discuss this with my Rheumatologist today during my visit. 

Thanks for your consideration.  This forum has been a Godsend for me.  Any feedback would be most appreciated!

Be well!

Jackie
Title: Re: Sjogren's and Lymphoma
Post by: Pooh on April 30, 2008, 06:37:39 AM
Hi Jackie,
Lymphoma is indeed one the problems faced by Sjogren's patients.  We all have to be aware of this and interact with our doctors in keeping an eye out for it. 

I will certainly bring up the request for a special "Lymphoma" topic at our next staff meeting and let you know. 

Thanks for bringing this information to the boards.

Pooh
Title: Re: Sjogren's and Lymphoma
Post by: Linda196 on April 30, 2008, 06:52:35 AM
Lymphoma seems to be a concern for anyone with an autoimmune disease, since they all list increased incidence as a possibility. In addition, the use of drugs like Methotrexate can increase incidence too.

There doesn't seem to be a very defined statement of increased risk, because different sources state anywhere from 0.5% to 10%; it depends on whether they measure the increase based on the numbers of people with SjS, the incidence of lymphoma, the percentage of people in each population with both, or a number of other factors. While it would be of interest to know who in our family is dealing with both, there are lymphoma sites far better prepared to deal with the concerns of lymphoma.

We will discuss the possibility at staff meeting, but my feeling is that such a specialized condition would be far better served by a site dedicated to its concerns..
Title: Re: Sjogren's and Lymphoma
Post by: susiekline on April 30, 2008, 12:44:26 PM
Lymphoma was one of the things I discussed with my rheumatologist. He said we have a slightly elevated risk of getting lymphoma. Think of it this way. If 10 percent of the general population gets lymphoma (and these numbers are completely made up--I don't know the actual figures!), then an increase of even 10 percent means your rate climbs to 11 percent. So it's not really that much of an increase.

Yes, something to keep an eye on, but not something you should overly stress about. This disease takes up enough of our energy!
Title: Re: Sjogren's and Lymphoma
Post by: jackieinnj on April 30, 2008, 01:39:10 PM
Thanks for those updates.  This is a topic of particular interest to me as a Sjogren's patient.  When I read that studies have showed the incidence of lymphoma was 44 times higher in people with Sjogren's than the general population, I felt concerned about the possibility.  And this was all in the literature given to me by my rheumatologist by the Sjogren's Syndrome Foundation.  What those numbers mean, however, I don't know.  It would be nice to hear from other Sjogren's patients who also have Lymphoma, how/when they were diagnosed, as well as how they deal with it daily.

When meeting with my rheumy today, she said that there does in fact seem to be a higher incidence of lymphoma, but, as we all know, Sjogren's can vary greatly from one person to the next.  She said it is ashame there isn't more research done with this disease like there is with RA and Lupus.

Regarding the information my oncologist provided comparing lymph nodes before and after a Lymphoma diagnosis, she did not provide any comment.  She was not aware of this research and said Sjogren's is an autoimmune disease - not a cancer.  I also couldn't find anything on this research when googling the web.  When I see my oncologist again, I will ask where he got his information.

Again, thanks for the input.  I'm always appreciative of the information!

Jackie
Title: Re: Sjogren's and Lymphoma
Post by: irish on April 30, 2008, 03:40:13 PM
Jackie, My hubby has two autoimmune diseases and has been diagnosed for 30 years but I know he had them when we were married in 1964. His GI always made sure that he had his colonoscopies every so often because of the risk of the lymphoma. One time he had a MRI of the abdomen with dye for some reason and one mesenteric lymph nodes was enlarged so they did more testing and everything was normal.

That was about 20 years ago and he has had no problems. I had seen the 44 times literature out there but everything that I have read or googled has been a much smaller proportion. I think this is really a hard thing to keep track of as lymphoma is a very weird condition that at times can have very few symptoms for a long period of time. It can be a very slowly developing problem. Many times people have had their stomachs scoped and a biopsy done only to discover that they had a lymphoma. The doctors may not have expected to find the lymphoma as every thing looked normal. It can look normal but yet show up within the cells.

Have you ever looked up a listing of the various types of lymphomas. It is very long and varied and I would think the docs would get totally confused. It takes a lot of know how to identify it or even suspect it. I am with the others who say that it pays to be very aware of it and notice any swelling in lymph glands and nodes but don't borrow trouble and lose sleep. Irish ;D ;D
Title: Re: Sjogren's and Lymphoma
Post by: Tamik on April 30, 2008, 07:36:17 PM
My husband -who does not have sjogrens -is a Non-Hodgkins Lyphoma patient-  he was diagnosed at 38 and for the first 4 years, tried every treatment available- including experimental.  The treatments would knock down the diseas, but then it would come back with a vengence.  His last resort was a stem cell transplant -3 weeks before his trnasplant, MY DAD died - of Non Hodgkins Lymphoma.  My husband is alive and on complete disability due to the side effects of everything he has been through -including chronic GVHD - where he is rejecting the transplant - he had his transplant 4 years ago and still has to have weekly doctors appointments and has to take over 50 pills a day.  Lymphoma is one of my biggest fears and something I don't want to face. Hopefully I will never have to decide whether or not to treat it. Many people go through 1 round of treatment and they are fine for years! Unfortunatley for my dad and my husband, that wasn't the case.  I am going to live in denial of this being a possible issue for now.  :) Tami K
Title: Re: Sjogren's and Lymphoma
Post by: irish on April 30, 2008, 09:51:55 PM
tamik. I am truly sorry that your hubby has been so ill with this disease and that you lost your father also. I hope and pray that your hubby is comfortable while enduring all the tests etc and taking all those darn pills. Hope and pray also that you don't have to face this problem.

This is sort of a timely subject for me today. I had a mammogram yesterday and reminded them that I have sjogrens and that I get a lot of swelling in my left breast accompanied much of the time by pain. I am very mindful of the opportunity for the breast tissue to be affected by sjogrens as it is secreting tissue.

Well, they called today and want me to come in for an ultra sound of my left breast. I am pretty matter of fact about a lot of things involving my illness, but I hung up the phone and got panicky. I can't take any chemo for anything because I have such a low t-cell count and I would imagine that radiation would cause me problems also. Sooo, I am thinking that if I have breast cancer I sort of am out of luck.

Then it occurred to me that maybe they are checking for lymphoma----and at that point I threw up my hands in dismay and said to myself. "Enough already", I won't lose sleep over this and I will deal with whatever comes a long when the time comes. I then proceeded to start sorting stuff out some as I have always said that I can't die until I get my house back in order. I gave myself a chuckle. Later on I looked up lymphoma and treatment and decided that I was out of luck there also.My darn t-cell issues really screw everything up.

My immuologist is leaning toward the hereditary angle with the t-cell as I had an aunt who had a lot of infections and had to quit work in her late 50's. She was also an RN and she lived to be 96---however, she was not as sick as I have been. Still, where there is life there is hope. Right now I am having a few other health issues that involve infections---again and other issues in my throat, sinuses etc and have been to oral maxillary. Hope he can sort some of this out.

Pooh, I still haven't gotten all my kitchen tile grouted but I am about 1/2 done. Slow still gets the job done. By the time I finish the rest of the doors for my kitchen cabinets it will have been a 2 year job. I think I have more patience than when I was 40!!!! Irisih ;D
Title: Re: Sjogren's and Lymphoma
Post by: Tamik on April 30, 2008, 11:44:00 PM
Irish,
 I am feeling for your scare - the worst part is the waiting game I think.  We have learned to live with the "What IS" and not the "What if's".  It really helps to be grounded in that.  I  will be waiting to hear how it all turns out.  Sorry for the depressing NHL stories.  I never thought about breasts being involved with Sjogrens - Mine are swollen  and tender all the time -my mammogram was fine though.  Had my first this year. Makes sense though! What else can I learn today.

Irish, you are truly a blessing to me -thanks for your wonderful words and helpful advice.  Tami K
Title: Re: Sjogren's and Lymphoma
Post by: jackieinnj on May 01, 2008, 04:22:29 PM
Tamik,
I'm so sorry for your husband's illness and all he has been through, and continues to go through.  I'm also sorry for you losing your Dad.  Lymphoma is a big fear for me, too.  I also fear breast cancer as my mom has had it.  Although, that was 20 years ago and she is going strong at 75 years old!  Cancer can be beat and she is living proof!  I'll keep you and your husband in my prayers.

Irish,
I never related Sjogren's with breast tissue, but that makes perfect sense.  I' pray that all turns out well for you.  I've had 5 biopsies over the years that have all turned out to be benign tumors.  I can relate to your fear. 
I had to chuckle at your comment, "slow still gets the job done."  I have so many projects started in my house and can't seem to finish because I get too tired!  It's either that, or maybe I have Attention Deficit Disorder when it comes to house projects! 

Take care and be well!

Jackie
Title: Re: Sjogren's and Lymphoma
Post by: Cheryl on May 01, 2008, 06:37:06 PM
Jackie,
   I think only about 5% of Sjogren's patients actually get NHL.   I was dxed with it in 1999, but I've been in remission since 2000 (one of the lucky ones.)   It isn't necessarily a death sentence.   
   Tamik, I know that's no consolation to you.   You definitely have reason to fear it.   I'm so sorry about your dad and your husband.  Did they both have high grade lymphomas?  I certainly hope your husband's future brightens.
   More typically, a Sjogrens patient would have the low grade (slow-growing,) less agressive nhl.   It's stubborn and scary, but not as deadly.
Best to all,
Cheryl
   
   
Title: Re: Sjogren's and Lymphoma
Post by: irish on May 01, 2008, 08:50:18 PM
Well, just to let you know that everything was ok with my ultra sound of the breast. Turns out it was a lymph node that had been seen previously in a scan or ultra sound. I think that my vest that I use for my airway clearance pounds me so hard that it shakes the tissue in my breasts. I have been thinking that I should bind them or something as that spot in the breast hurts frequently during the pounding.

So, another hurdle over with. Took a sputum spec in again also as I am on the Diflucan for 3 days, but something just isn't right. Either another weird infection along with the yeast, or a really bad case of the yeast with unusual symptoms. So what else is new!!!! :P

I have 2 appointments next week and the week after that one appointment and my infusion. I couldn't get anything done even if I was feeling a little frisky. TAke care everyone. Irish ;D
Title: Re: Sjogren's and Lymphoma
Post by: Tamik on May 01, 2008, 09:21:18 PM
My husbands was a slow grade -that was acting agressive :)  They couldn't figure out why!  He is still alive and is actually doing O.K. for the most part.  He even participated in a study (one of many - we live by Seattle) that made him radioactive and quarantined for 5 days - the study had great results for 98% of the patients! He was one of the failures - I joke with him that it is because he is so stubborn!  We laugh about things that people just don't find funny -such as what I will do to him if he dies - he will probalby out live us all though -who knows -one day at a time! We find joy in EVERYDAY!  Life is too precious to waste it away... 
 
Irish- glad the reports were good! That is a HUGE relief!  Now I hope you get the yeast thing figured out - I am on my second round of antibiotics for a sinus infection and have managed to avoid one so far -I shouldn't have jsut mentioned that -I will probalby wake up with one tomorrow now! :) 

Tami K 
Title: Re: Sjogren's and Lymphoma
Post by: slross on May 02, 2008, 02:20:38 PM
Hi Sjogies.  I've been diagnosed for 6 years.  Last month was the first time I've been informed of being high risk for Lymphoma.  It scared me but my Rheumy told me what symptoms to watch for.  This would be a good category to add.  So much good info on these forums.  sr
Title: Re: Sjogren's and Lymphoma
Post by: JannaLee on May 10, 2008, 04:01:59 PM
Slross~ What are the symptoms to watch for?
Title: Re: Sjogren's and Lymphoma
Post by: Linda196 on May 10, 2008, 05:18:41 PM
Hello Slross, sorry I missed your post earlier, but (better late than never) welcome to Sjogren's World.

JannaLee, the list I was given of things to watch for said to call the doctor if you have had any symptoms for longer than 2 weeks, and they are new or sudden onset,such as:

Painless swelling in the lymph nodes in the neck, underarm, or groin.
Unexplained fever.
Drenching night sweats.
Extreme fatigue.
Unexplained weight loss in the past 6 months.
Itchy skin.

Of course all of these symptoms can be present in SjS or a number of other autoimmune diseases, that's why my doctor included the bit about "new or sudden", because if not, I'd probably be there once a month!

I was originally diagnosed with non-Hogkins Lymphoma nearly 30 years ago (by mistake), and have been assessed several times since, always with negative results (which is actually a positive outcome). I've been assured that the actual increase of incidence isn't nearly as bad as the numbers make it look, because of the comparative base numbers of SjS population vs world population.
Title: Re: Sjogren's and Lymphoma
Post by: JannaLee on May 11, 2008, 06:57:08 AM
Thank you Linda.
Title: Re: Sjogren's and Lymphoma
Post by: RitaB on May 11, 2008, 04:48:14 PM
I went out and did a search on the internet on "sjogren's and lymphoma" and there is one more symptom that is always listed and that is "persistant painless swelling of the parotid glands" and I've been complaining about this for a year now.  And there are no signs of the glands getting better.  When I saw the rheumy this past week (which was the first time with her) she seemed surprised that the ENT I saw a month or so ago did not do a biopsy on my glands.  Maybe this is why??

Well now I am concerned.  I am suppose to hear back from her - the rheumy - (as I mentioned in another post) after she reads the reports from the MRI's herself as she told me that she is pretty sure that I need a biopsy but she did want to read the MRI report first.

As always, it is "hurry up and wait and wait and wait!'

I guess we will all hang in there together.

RitaB
Title: Re: Sjogren's and Lymphoma
Post by: stegello08 on May 11, 2008, 08:05:51 PM
Rita,

I am also concerned. I only have swelling in my left gland, but it's lasted for a few months now, and it does not show any signs of going completely away. It gets bigger and then gets smaller, and goes back and forth. I'm now growing my hair back out to help cover it better. When I finally go see a ENT, I  am going to be pretty insistent that they check it out.

Hang in there, and keep us posted about your appointments.