Hollee 

I was diagnosed with smzl in May 2017 after going through a bone marrow biopsy and pet scan. I then had my enlarged spleen removed in July 2017. In August  2017 after continuing to have fatigue and night sweats I had another bone marrow biopsy and still had lymphoma in the marrow. I then had 4 weeks of rituximab.  I am now on a watch and wait. I will have another ct scan the end of January.  I still have night sweats and fatigue. I live in the USA.

Hi Steve

Thank you for the reply. I hope you will soon begin to feel better and your next scan is positive. Has having your spleen removed made much difference to your life? Do you get many infections or are they controlled by the antibiotics? It really is a difficult decision to make although I know that Lee wants to try the rituximab first if we can get the dcos to agree. His spleen is very large even i can feel it and I am not a medic. 

Has your blood tests continued to improve which would be a good sign I beleive.

Thanks again and good luck

Hollee 

I have not had a lot of problems without my spleen. The inflections that I have had were minor and were taken care of easily with antibiotics. I am 66 and I am still able to work full time. I have learned to deal with the fatigue. I didn't have any side effects to the rituximab. If Lee has an option to just do the rituximab I would try that first. I was not given that option. My blood tests have mostly been in the normal range since the end of the rituximab. I wish you and Lee the best of luck with your journey. 

Hi Steve,

Thank you for sharing. Keep up the good work as I am a firm believer that work is what keeps us going.

My dad when he was alive always advocated that it was best to work for as long as possible in your life time. I have to say he did exactly that until literally the day before he died of asbestos in his lungs. He was 73 years old and I still laugh when I think of him, walking around with his morphine in kiddie pop bottles having a swig like it was soda pop.

He would say it is all about the frame of mind and you seem to have the same ideas working your way through this.

Hope all continues to work well for you and once again many thanks.

Hollie

Your dad had the right idea. He must have been a good man. It is not how much time you have left it is about what you do with it. I plan on enjoying every day. Good luck to both you and Lee.

I am a 37 year old male and was diagnosed with SMZL last July.

My symptoms at the time were persistent mulcers and upon investigation I was found to have a high WBC count.

My spleen was enlarged at 17cm and I have bone marrow involvement. 

I for the past 12months I have  bèem on watch a wait with regular blood tests. My WBC count has steadily risen to 34 with all other counts stable.

I know I will need treatment in the future and feel fine at the moment.

I have found it realy hard to find any current research and anyone in a similar position as me to talk to.

I read your post and was wondering how you was getting on?

Regards

D

Hi D

Sorry to hear about your diagnosis are you in the UK?

It is very difficult finding up to date research but there is some out there. Lee opted to have the rituximab 4 doses and had to be given over 12 hour periods as he did not respond well to it. However, he did manage the course and had a massive reduction in the size of his spleen and was doing exceptionally well but is now having to look at more treatement as the spleen has grown again to 27cm. The treatment has only worked for 10months. He is about to have a pet scan to decide next move. On the whole apart from increasing sweats and occasional pain he has done exceptionally well. 

SMZL is a very difficult disease to try and understand for us lay people especially when it is heavily impacting the bone marrow. We had to fight to get the rituxomab without chemo and spent almost a year fighting the guidance of NICE. The european guideliens are sometimes better to look into .

On the lymphoma action org web site there is a section on treatments they say are available but unfortuanely the NHS say that these are not currently available so it looks like another fight is on the cards.

We are waiting for the PET scan before disgussing further the best way forward and should know what the scan says on the 1st July. On offer is removal of spleen or chemo with rituximab neither of which is what we would like to have. I will be doing a lot of research over the next couple of weeks and will give you links to anything of interest that I find.

We are more interested in targeted immuno therapies as chemo is definitely not an option we would take.

Unfortunately it does not seem possible to discover how long Lee has had this and because it is incurable the best that can be achieved is to keep trying to slow or knock back the disease. Our DR has said that usually what happens is that the time before each treatment is needed tends to becomes less as the body does not respond as well. Having said that some people get 5 years before needing more treatment I suppose everyone is slightly different.

Exercise and change to diet is a massive consideration especially the removal of sugar as sugar is known to feed the cancer cells. Be positive and don't give up.

Will update when I have more info to share.

Best wishes

Hollee

D

Sorry to hear about your diagnosis. I have been diagnosed with smzl in 2017. I live in the US. I had my spleen removed in July of 2017. 4 months later had 4 weeks of rituximab. I am in remission now but don't know for how much longer.  Because of Covid 19 have not had test for about 6 months.  I have now been recently diagnosed with multiple autoimmune diseases and had some positive blood tests that are not normal. Just to let you know that I have not had any problems with having my spleen removed.  If you have any questions I will try to answer them if I can.  Good luck on your journey. Try to stay positive because it really helps. 

Hi Steve

Glad to hear you are still ok. Why did you need to have rituximab after having spleen removed if you don't mind to share?

Do you have to be on atibiotics all the time because of removal of spleen?

Lee also developed a prolactinoma in pituary gland we have been told it is not connected but does make me wonder

Stay safe and well