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splenic marginal zone lymphoma

sal100
Posts: 6
Joined: Jun 2004

I had my spleen removed 2 years ago. The specialist has adopted a wait and see approach. Everything seems to be alright but I am in a continual state of anxiety waiting for something to happen. Has anyone had this experience . How long could I expect to be in remission. My life seems to be on hold and I just can't function as I should. Any advice please.

benita
Posts: 13
Joined: Mar 2004

Hey, I was also diagnosed with splenic marginal zone lymphoma. They could not remove my spleen at the time because it was too large and there was too much risk of bleeding. I went through 6 rounds of CHOP plus Rituxin last summer. I lost my hair and everything. However, I tolerated the treatments well and am in remission now. My last bone marrow and ct scans were negative. I see a doctor at Vanderbilt and he specializes in lymphomas. He stated that when the lymphoma returns (and he felt it would) that there is a fairly new transplant called mini stem cell transplant that has been very sucessful in curing these low level lympphomas. So, I guess what I'm trying to say is that there are many options for lymphoma patients. I've been told it may return in two years, 6 months or even 15 years. I pray that yours and mine will stay away forever. By the way, I'm 45 years old and have two children ages 12 and 13.

sal100
Posts: 6
Joined: Jun 2004

Hi Benita, It was nice to get your feedback on this discussion board and I am glad that you are going well. My spleen had grown very large also. It was way down in the pelvic area. Specialist had no option but to remove it because he could not diagnose what type of lymphoma that I had. Could not diagnose through other tests and scans. I was told by Drs. that it was 99% sure that I would need to be transfused. However I was very lucky or else the surgeon was very quick and accurate and did not need the transfusion. Spent three days in intensive care and then recovered very quickly. Out of hospital in 2 weeks. Oncologist also thinks that it will return but there are many ways of keeping it at bay. He also said that the research is advancing very quickly and could have a cure (not a treatment)in the next 5 years. He is a haematologist. So I hope that this will be true. Thank you your posting . It reminds me that I am not alone with this problem.
Regards and keep well

krouff
Posts: 2
Joined: May 2004

I also have SMZL, diagnosed almost 3 years ago after splenectomy. There are lots of treatments out there- some better than others, but lots of options. Just keep in mind that, with a low grade lymphoma, chances are it won't get you. Watch and Wait is frustrating, but it is much better than some of the alternatives.

sal100
Posts: 6
Joined: Jun 2004

Thank you for your reply. You are right. At least I am at the moment in good health so that is a positive. I was very positive during and after surgery and that went a long way to help me make a very quick recovery. The rot set in a bit later when I felt nothing was being done. Thank you again for your reassuring words. Regards

avrilcudmore
Posts: 1
Joined: Dec 2009

Hi Benita and Anyone else out there who has had a recent diagnosis of Splenic Marginal Zone Lymphoma

Your last post to this message board was in May 2005. I hope you still check the board.I am trying to find someone I can talk to.Yours is the last post for Splenic Marginal Zone since 2005. How have you progressed since 2005?
I am 64 yrs old and was diagnosed in May this year with stage 1V lymphoma and a massive splenomegaly. I have had my spleen removed. I have bone marrow involvement but this is fairly negligible at this point in time. What is of concern is lymph node involvement which is apparently rare. I have lymph node involvement in various deep parts of the body with a large node in my neck which has been biopsied twice. It sits between my jugular vein and carotid artery and can't be removed.
My haemotoligist is suggesting a course of oral cladribine for 6 months. Does anyone out there have any experience of this drug - it is an alkylating agent and is a derivative of mustard gas. Is it successful in shrinking lymph nodes? Does anyone have experience of the side effects?
Regards
Avril Cudmore

Bailey2010
Posts: 1
Joined: Sep 2010

Hi all,

My mum has just been diagnosed with SMZL. Benita, I see your post was back in 2005 so not sure if you are still loging into this but if so, or if anyone eles with SMZL, I would be really interested to hear how your journey has been.

Thanks

jo66
Posts: 4
Joined: Jan 2013

Heyy Bailey...

Ur post s of 2010.. I hope n pray dat ur mom s fine. My mom ws too diagnosed wid SMZL in Nov 2012. Her spleen hs been removed in Jan n at dat tym her spleen hd 50 cms in size.. She took time to recover frm surgery arnd 4-6 weeks.

We got her CTscan n blood tests done few days back... her cbc s normal, Hb is exceptionally gud n scanning s fine.. docs hv called us in dec fr next follow up

Nw i feel after splenectomy my mom's health hs improved.. shes energised as before.. 

So dnt worry.. jus follow the doc advise and regularly go for follow up

55lbspleen's picture
55lbspleen
Posts: 3
Joined: Sep 2010

Diagnosed in March and they removed a 55lb spleen 2 months later. Feeling great and hopeful. Don't sit around wasting your life waiting for the other shoe to drop. Could be 10 or 15 yrs before that happens and you'll have wasted all that time. If your going to get cancer, this is the one to get. Prognosis is good and I expect to be around to see my kids graduate and meet my grandchildren. whatever comes next, I'm ready! Hey Bailey. your Mom is going to feel much better and have more energy once that spleen is gone and there is no downside to losing your spleen. Your body adapts and other organs take over the filtering job. Just make sure she goes straight to emergency if she gets a virus and develops a fever. Good luck and if you find out anything interesting ,please post it!

govia's picture
govia
Posts: 4
Joined: Sep 2010

Hi, I am new to this list, I am 51 and was diagnosed in January after having my spleen removed. In February I contracted shingles, I am still dealing with the nerve pain from that. I felt great after my splenectomy, I was full of energy. Lately I feel exhausted all the time. I am seeing my hematologist soon. Has anyone else experienced this? I am a bit nervous.

Crixy
Posts: 4
Joined: Dec 2016

Hi Govia: In December of 2016 I entered the hospital with what was thought to be a urinary tract infection.......4 days in I ended up with shingles. After 21 days in the hospital in isolation I was about to leave my Spleen enlarged quickly and protruded out the side of my body. It was thought before that I had Chronic LYmphacetic Leukemia as that and SMZL have the same symptoms until the spleen enlarges. I am scheduled to have my spleen out soon I was jsut at the oncologist and my levels are good and she says all is well, the only problem is the spleen. I am going to have it out and hope that I will be ok after and I pray my shingles does not come back. It has been a year and 2 months since the shingle outbreak and the nerve pain is still there, but it gets easier every week the pain subsides a bit at a time. My fear is that the surgery will bring out stress in my body and I will have a reoccurance of shingles. I see your post is old but was wondering how you are doing with everything?

 

Crixy
Posts: 4
Joined: Dec 2016

Hi there.....I am new to this web site and I have just decided to have my Spleen removed because of SMZL I have had symptoms for over a year, my Spleen enlarged after an acute attack of shingles. My surgery was scheduled for Jan. however the day of on my way to the OR it had to be cancelled as my surgeon had the flu. I am waiting for a new wurgery date and have now started to rethink my decision, however, your blog post has made me feel good about the surgery again. Im just really worried about the after days without a spleen. Did you have your received laprascopically or the old way? Did you have any things happen after surgery? How long was your recovery? Thanks for sharing your story. 

 

SDesai
Posts: 2
Joined: May 2013

Hello.

I  have joined this forum just now.  I was diagonised with Splenic marginal zone  lymphoma in 2004. Spleen was removed and was kept on wait and watch. In 2013, on a pet scan , it showed many small nodes of 1cm or 2cm in size, mostly in abdomen and pelvic region and not above the diaphragm,  which are FDG avid meaning cancerous with SUV of 4.5.  One specialist suggests we should start with R chop, chemotherapy  where as when I took opinion of other specialist doctor he told me to wait and watch as my general condition is very good.

Do you have any idea or experiece as what to do when there is diffrent advice from two different doctors ? Both could be true from their perspective.

Regards,

 

onlytoday's picture
onlytoday
Posts: 601
Joined: Jun 2010

Hi S Desai,

 

The same thing happened to me.  Dx. with Nodal MZL in May of 2010.  After my first onc. appt went for a second opinion which was completely different than the first.  So I called my insurance co. and luckily they said that I could go for more opinions and they would still pay.  So I went for a third, who gave me the same advice as the first.  So I stayed with the first doc and always get a second opinion from the second when I get treatment or when there is a change of some sort.  Works for me.  In a partial remission since October.

Best of luck with your decisions.  Feel good and keep us posted!

 

 

 

 

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

Hi SDesai,
I was also dx with SMZL in July 2011, my first onc suggested watch n wait. I stayed with him for 5mo but I felt like my health was declining so I got a second opinion and he suggested Rituxan therapy once a week for four weeks every 6mo for 2yrs. I'm almost done next Thursday I will start on my last round and hopefully I will be done with any type of treatments. I agree with Donna and get another opinion, I'm doing very well with Rituxan and it's not as harsh as RCHOP. Take care and please keep us updated on how things go for you.

Sincerely,
Liz

Marcus1983
Posts: 3
Joined: Jul 2013

Hi All,

I may be a lot younger than some on here. I was diagnosed with SMZL a motnha go at the age of 30. Luckily my symptons are non existant at the moment (mostly) and my spleen is not too large (17cms).

I have been given the option of a spleenectomy by the doctor and I was wondering how this has gone for everyone on here who has had one. HAs it made a difference to your life? I know in some cases its a must, but in my case it might be as many as ten years until I need to actually do it.

I am also trying to raise awareness of the issue and am blogging about it at

http://spleniclymphoma.com/2013/07/10/the-purpose-of-this-blog/

Please feel free to visit and leave a comment or two. I will be raising money for research at some point soon as well!

I wish you all the best and look forward to hearing about how you are getting on!

Marcus

 

Cork_H
Posts: 2
Joined: Apr 2011

Marcus, et al:

After being diagnosed with SMZL in late Summer 2010 due to enlarged spleen, I began treatment in the Spring of 2011.  Had 8 treatments of Rituxan over 8 weeks. Only the first treatment was bad, and partly because I react negatively to large doses of benedryl.  Subsequent treatments were fine.  I was energetic thoughout that time. 

It was determined during the 3 month follow-up in August 2011 that my spleen was still very enlarged, so we went the splenectomy route as well. Post  surgery pain was rather intense, but I actually went back to work less than a week later (my Dr. doesn't know this!) and did fine, as I sit most of the day.

Since that time, my WBC has normalized (it took about 8 months to get to the normal range).  It has been almost 3 years now - I feel great, WBC is normal so far. Dr. says it could literally go on like this forever, but usually will need Rituxan "maintenance" every few years. So far, I haven't needed it.  He says that a long normal healthy life is expected.  Only thing is to be much more aware of germ passing activity and washing hands more frequently.  I get flu vax annually and also got a shingles and pneumacoccal vax. 

Since my treatment I have never been sick with anything, which is amazing since I was told that not having a spleen, I would be more susceptible to viruses, etc.  I am 61 BTW.

Crixy
Posts: 4
Joined: Dec 2016

7 years ago I was diagnosed with Chronic Lympacetic Leukemia.  I had no symptoms or any concerns this entire time. Last Dec. 15 2015 I was admitted to the hospital for severe pain in my back. 4 days later I broke out in shingles and spent almost a month in the hospital in isoation. 3 days before leaving the hospital I noticed a bump on my left side. Turns out it was my spleen. After many bone marrow biopsies blood work lymph node biopsy and 2 oncologists I was diagnosed with SMZL. My spleen is currently 22.4cm x 19 cm. I was given the option of surgery or chemo/rituxan. I am opting for the surgery. I stil made need chemo however there is no gurantee my spleen would shrink enough with chemo for me to return to work and life. My surgery is scheduled for January and I am scared but I still feel that this is best to avoid a reoccurance of the spleen enlarging to such a huge size again. I am still suffering with the nerve pain from the shingles and am hoping for the best once my spleen is removed. I know I still face chemo but it has been a year and I need to do something to get back to life. I have been off of work a year now and am very restricted in things I can physically do. I have no symptoms except for the spleen and the discomfort from that. Anyone out there who has had there spleen removed who can give me some hope or encoragement. I feel I have made the right decision but I know of nobody who has the same condition of me or who has gone through anything like this. Would love to hear comments. Hope everyone on this site is doing well and I wish for all to have good health and long life.

Crixy
Posts: 4
Joined: Dec 2016

Hey everyone: I was supposed to have my spleen out in January of 2017 due to SMZL and my surgeon got the flu so surgery was cancelled. The next date given was in Feb. however my husband was out of town for the date and it could not be changed since we have no family in town I did not want to do the surgery alone I declined that date. Well not a good plan now I have been told it won't be in March but  possibly April but more likely May or June. My last check up with my oncologist was January my levels are all good and "normal", I know she is pro chemo and rituxin.  I have made the decision that whatever appointment comes up first my oncologist check up  appointment or my surgery date I will take whatever comes first. I have been waiting a year and a half since my spleen protruded out the side of my body after a sever case of shingles (still suffering nerve pain)I have had 3 differant diagnoses in the last seven years, 3 bone marrow biopsies, one lymph node biopsy, and now my new diagnosis is only 90 % sure it is SMZL it could still possibly be Chronic Lymphacetic Leukemia. My frustration level is beyond explaining I can not work and I feel like my life has been on hold long enough. I feel there is no choice for me as it just never seems the surgery never happens for whatever reason and I must keep waiting and waiting. I am leaving it up to fate now so not sure if it will be surgery or if it will be chemo rituxin, I guess I have to wait to see who calls first the surgeon or the oncologist. So frustrated with all of this. I am tired and just don't want this consuming my life anymore, something needs to be done so I guess again I will wait and see. Hopefully everyone out there who has the same diagnosis is not waiting as long as I am and your issues are being resolved quickly. Have a great day and wishing everyone the best. 

 

po18guy's picture
po18guy
Posts: 486
Joined: Nov 2011

Blood cancers (leukemias) and tumors of the immune system (lymphomas) can be extremely difficult to identify. Some are identical, the difference beween lymphoma and leukemia being only where they appear. This is true with CLL and SLL. Before you are cut on, I would see if the rituxan helps. It is known for allergic reactions - but only during infusion, and it can be slowed or stopped. It is the gold standard for many cancer blood treatments. Your spleen is essentially a huge lymph node, and it exists for a reason. If it is enlarged, it is probably due to collecting malignant cells in it. If so, then the rituxan will strike at their heart. But, this is something to discuss with doctor, as each case is completely unique. Personally, I'd take the rituxan rather than the knife, but then again, I've had 18 chemotherapy drugs so far.  

illead's picture
illead
Posts: 712
Joined: Aug 2012

My husband has a different lymphoma, Mantle Cell, but he did have an enlarged spleen, about the size of a football.  His blood counts were very low because his blood was collected in his spleen. His chemo regime was Bendamustin/Rituxan. Then 2 yrs maint rit.  It took awhile but his speen finally went back to normal.  Every case is different of course and I don't know much about the spleen, but maybe that will help calm you a little.

Becky

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2307
Joined: May 2012

Crixy,

Why is treatment an either/or ?  Why not do both Rituxan and surgery ? While SMZL is very complex, I'm pretty sure that "both" is the choice I would make.

In most cancers (organ cancers unrelated to lymphoma and leukemia) cutting out a tumor or organ that is massive is termed "debulking," and can assist other modalities (chemo or radiation) toward a cure.  The reasoning is sort of: "Patient x has this rogan cancer, with about 5 trillion cancer cells in the body. If 4 trillion are in organ y, then removing organ y will have us 80% toward removing the cancer from the body. Better muchless cancer than more."  A weakness in this regarding lymphoma is of course that the lymphatic and circulatory systems are systemic -- they go everywhere.

Debulking is very common in most non-blood cancers, perhaps the norm. It is also frequently highly pallatative.  Again, I do not see why surgery would in any way preclude the use of Rituxan.  It may be that stategically it would be better to do some Rituxan to see how much reduction it casuses, which might assit in making surgery easier.  It might also potentially, so cure the spleen that it need not be removed.   Ask the oncologist.

If forced to choose one or the other, I would start Rituxan yesterday and avoid the surgery.  As Po suggested, in the world of chemos and chemo-like IV drugs, Rituxan is the mildest and easiest to tolerate.  Technically, it is not "chemo" at all, but a biologic "monoclonal antibody."  It will not cause hair loss or most of the other side-effects wrought by most chemotherapy drugs.

max

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