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Splenic marginal zone lymphoma.

jackieyar
Posts: 2
Joined: Jun 2016
jackieyar
Posts: 2
Joined: Jun 2016

i am not sure if removing my spleen will help with my fevers, night sweat, flu like pains and fatigue.  

My spleen is twice its normal size  

i was diagnosed 10 years ago  

Have you experienced a great improvement by removing your spleen.  

Did you have complications from surgery and a compromised immune system. 

Max Former Hodg...
Posts: 3699
Joined: May 2012

Jackie,

While most lymphoma patients do not have their spleens removed, I have read that it is common to have surgical removal in your strain.  You were diagnosed with what ten years ago ? This same strain ? 

All cancer treatments cause significant side-effects: Chemo does, but so does surgery. I have had both; it is just a matter of what is necessary and has a reasonable prognosis for fixing the problems. 

Obviously, your oncologist is a place to begin with these questions.  I am intersted to learn what you are told.

max

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

Hopefully there is someone on this site who can answer your questions. If you  haven't done so already, try looking online for others who have had this done, or not , and read their experiences. I usually stick with posts no more than 2 or 3 years old because treatments can change so much in a few years. 

illead's picture
illead
Posts: 875
Joined: Aug 2012

My husband Bill has Mantle Cell Lymphoma.  At the time of diagnosis in July '11 his spleen was the size of a football and he was full on night sweats, high fevers and could barely walk, etc.  They did not remove his spleen and after his first chemo he started feeling better and continued to improve until he was in remission.  It took awhile but his spleen finally decreased to normal.  However there are probably different opinions and ways of thinking on the matter.

My best,

Becky

KarenSMZL
Posts: 16
Joined: May 2016

I was diagnosed with SMZL in May of 2016. I had massive splenomegaly.  I had surgery to optain a biopsy for definitive diagnosis and the surgeon said he was only 20% confident of getting the biopsy without splenectomy.  I didn't have to have the splenectomy and I honestly was disappointed because I was very uncomfortable with it and because I had read it can result in a pretty durable remission.  I abdominal lymphadenopathy at the porta hepaticus so I would have had to undergo chemo anyway.  Two treatments with Bendeka and Rituxan have made it "barely palpable."  But, I have had all the recommended vaccines for splenectormy and hope that you will have them before surgery.  After splenectomy you will always have to be careful to protect yourself from viruses and bacteria and to go to the doctor right away if you have any sign of illness.  Good luck and Godspeed!

dorr1967's picture
dorr1967
Posts: 1
Joined: Jul 2016

Hi, I was diagnosed, Jan. 8, 2016 with stage 4 B-cell NHL, SMZL. My cancer started in the spleen. I had spleenomegaly x 18 mo prior to diagnosis. Feb. and March I had 4 rounds of Rituxin with no results. June 30 and July 1 2016 started round 2 with Rituxin and Treanda. I have seen no improvement of the spleen, my labs continue to get worse and I have side affects. I was in the sun on the 3rd got a little sunburn on my feet and arms, now my whole body seems sunburnt and getting worse but its not sunburnt. even my back witch was covered, feels like a sunburn. I have bad pain in my spleen, they put me on norcos, which i hate. I have nausea, my hair is coming out,(which they said it wouldnt), and i can not stay awake, no matter how much i sleep. Has anyone else had these side affects. Thanks D.

rainier
Posts: 1
Joined: Aug 2014

I was diagnosed SMZL two years ago. I remember that I had a sunburn of a small spot on my neck and it lasted several years, but it did not get worse. It's gone with all other symptoms after 8 doses of rituxan. I hope you well.

KarenSMZL
Posts: 16
Joined: May 2016

I am sorry that you are having these side effects.  I know that skin problems are very common with these drugs.  I understand about the pain in the spleen and I read somewhere that it could be a sign that the medications are working, so that is what I choose to believe.  I know that I was told by my oncologist and surgeon, that if they could not shrink my spleen with chemo and immunotherapy, they would reconsider splenectomy.  However, if you have lymphadenopathy outside of the splenic hilum, you will need to be treated with chemo as well.  There are several treatment options and I would urge you to talk to your oncologist about your side effects.

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