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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.

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: 596
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: 756
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.

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