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anyone fighting SMZL splenic marginal zone lymphoma

IsabelleY
Posts: 1
Joined: Aug 2010

I was diagnosed with smzl a couple of months ago. Currently undergoing chemo therapy with cladribine and rituxin. The spleen is already starting to shrink and I am having little negative response to the chemo, essentially just fatigue and a little chemo brain. The big debate between my two oncologists was getting a splenectomy or not. I may need one down the road, but I opted for the chemo and save the spleen. I have read that this seems to be a successful approach now. I am just concerned about long term survival and spreading to other areas. Any one out there also fighting this type of cancer. I have read that it affects only 1 to 2 percent of people with non hodgkins lymphoma. And the remission terms can be relatively long. I am 63 years old and really hoped to see my grandchildren grow up. Thanks for your input. Isabelle

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3446
Joined: May 2012

 

Bless you and Isabelle both, dear Jack. Hers was such a beautifull name.  While you continue in this life, awaiting the day when you see her again, know that you will heal and be well again one day.

max

Jack Y
Posts: 6
Joined: Apr 2015

I am looking forward to both Max.  When will the tears stop?

 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

Losing someone you love is never easy and everyone grieves differently. Eventually the tears will stop. But then they will start up again when you find an old picture, or you see something that reminds you of her. As time goes on you will remember her without the tears. How long, I can't say. My mom died 10 years ago and there are times I still cry when I think of her. It is not often any more but it happens. I set up a little memorial to my mom & dad (he died 28 years before her) on my computer desk at home and another one on our fireplace mantel. Seeing the pictures somehow helped me to get through the pain. I know for others doing this only makes it worse. You need to find what works for you. It just takes time.

Evely
Posts: 1
Joined: Sep 2015

3 yrs. ago I felt a 'bump' in my stomach.  An ultrasound showed my spleen was enlarged and 2 months later I was diagnosed with SMZL.  I did the "wait and see" for 8 months and was then scheduled for laproscopic surgery to have the spleen removed.  Unfortunately, because it was so large, I ended up having abdominal surgery (Sept/13).  Chemo was not even mentioned as an option.  Once I recovered from the surgery, I immediately started feeling like my 'old' self and have had no symptoms since.  My oncologist has told me that the "average" re-occurence period is 5 years.  Without a spleen, my immune system seems to be just fine - haven't even had a sniffle.  I am an active 73 year old and can honestly say that most days I don't even think about my cancer, and I'm hoping to live long enough to see some great-grandchildren.  Hope all goes well with all of you.

Evely

steve5k
Posts: 2
Joined: Nov 2015

I was diagnosed with SMZL in September, 2014. I was 74. I had 4 weekly treatments of Rituxan at UT Southwestern Medical School Cancer Center in Dallas. Within 3-4 months all of my previously out-of-normal-range blood components were back to normal, except Platelets.  This includes my spleen which had earlier been about 4 X normal size.  I meet with the oncologist every 3 months and all looks great over a year later.  I consider myself one of the really lucky ones.

Steve

dianevanv
Posts: 1
Joined: Dec 2015

Hi.  I had been feeling sick for years and didn't know why.  Then a year ago my blood counts  had dropped to a dangerous level.  I was weak shakes and I thought my heart was going good to go thru my chest it was pumoping so hard.  I had a  bone marrow biopsy which showed cancer.  Then a CT scan which showed an enlarged splean.  I looked 6 months pregnant.  I had a 7 pound spleen removed last July.  My energy and health are very good now.  I still have cancer my bone marrow but I am now on a wait and see.  The oncologist said it will come back.  It's hard to not be anxious when I feel I have a ticking time bomb over my head.  I am trying to be at peace.  I AM also very grateful to feel so healthy after 10 years off feeling sick.    I want to move forward and enjoy life.

john1947
Posts: 14
Joined: Nov 2015

I'm not sure if I have mantel cell or not, but my spleen is enlarged, I do not have swollen lymph nodes and do not have symptoms.  I had a bone marrow biopsy that came back clean according to the oncologist.  She sent me to a ear, nose and throat for lymph node biopsy and when I arrived he had my chart and said it was marked as Mantel Cell.  He called the oncologist but did not schedule the biopsy. 

History:

In late August my blood test came back abnormal, I have one every six months and they have always been fine until this one.  WBC was 14,000 and platelets were low a month later WBC was 19,000 and platelets had dropped a bit.  One month later WBC was 23,000 and again platelets were lower.  My GP though it might be CLL and sent me to an oncologist for bone marrow biopsy.  I'm thinking it might be smzl because of the swollen spleen.

Does any of this sound familar to you.

 

illead's picture
illead
Posts: 857
Joined: Aug 2012

Hi John,

     My husband Bill has Mantle Cell.  He did not have swollen lymph nodes either and his spleen was quite large.  His bone marrow was 90% MCL though.  I debated about answering because I don't want to worry you anymore than you are now.  If it does turn out to be MCL, just know that they have come a long way with research and there is a lot to be hopeful about.  Please let us know tho, whatever you find out, it could be anything.

Becky

illead's picture
illead
Posts: 857
Joined: Aug 2012

Hi John,

     My husband, Bill has Mantle Cell.  He had no swollen lymph nodes but his spleen was quite large, his bone marrow was 90% MCL though.  I debated answering you, I don't want to worry you more than you already are.  Please be assured they are making much progress in their research and things are very promising.  Please let us know what you find out, it could be anything.

Becky

john1947
Posts: 14
Joined: Nov 2015

Becky,

Thank you for your reply.  My bone marrow biopsy came back clean, showing no signs of cancer cells.  I don't know if they are going to do a lymph node biopsy or not, I think I would like to have this done to be sure.  I've had CT scan, X-rays while in the hospital for pain on my left upper quadrant, this is when I had a bone aspiration and marrow biopsy.  The oncologyst came into my room all smiles to tell me I did not have leukemia but could not rule out lymphoma at that time and wanted to do a lymph node biopsy, but when I arrived for the biopsy appointment the ear, nose and throat MD was somewhat confused and did not have the CT scan and read a note on the oncologist file that said mantle cell.  Of course I was upset hearing this.

I see the oncologist on Wednesday.  Whatever it is I will do whatever needs to be done.

 

illead's picture
illead
Posts: 857
Joined: Aug 2012

I had problems today getting on this site.  I am hoping you are okay and got good news.  Please let me know what you have heard and I can give you some good hopeful information.  If it is MCL, please don't panic, click on our picture for Bill's story.

Thinking of you,

Bill & Becky

 

john1947
Posts: 14
Joined: Nov 2015

Hi Becky,

Saw the Oncologist yesterday.  I do have MCL.  Start R-CHOP December 1st.  I do have some lymphoma cells in the bone marrow, spleen and of course the lymph nodes.  My lymph nodes are not swollen.

I am not looking forward to the chemotherpy but I'm sure I will get through it just as everyone else has.

I feel good and my GP says I'm in great shape so I should do fine.  I go for a flu, pneumonia and shingles shot on Monday.

I don't know if I will be able to continue working, not much information available on how chemotherpy affects abilities and work.

Thank you for thinking of me.

John

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

Hey John,

I had follicular lymphoma and did 6 rounds of R-Chop with 3 weeks per round. I found the hardest part of the chemo was taking the 100 mg of Prednisone for 5 days and the crash 2 days after stopping. My routine was:

Week1 - Monday work (in office), Tues chemo (vacation day), Wed-Fri work (from home), Sat-Sun rest.

Week 2: Mon-Tues work (from home), Wed - Fri work (in the office), Sat-Sun rest.

Week 3: Mon-Fri work (in the office), Sat-Sun visit with family & friends. 

I was fortunate that I could work from home. The 3 days right after chemo I could have gone to the office but that darn Prednisone would make me light headed in the monring so I didn't feel comfortable driving. Usually it was better after noon. I also found that when I stopped the Prednisone, if I made sure to rest/nap on Sunday afternoon & for about an hour on Monday, it wasn't so bad on Tues. 

The main key is water-water-water. Even though they give fluids during chemo it doesn't hurt to bring some water with you. For those days right after just keep in mind that a lot of poisons have been pumped into your body but not all of it was taken in by the cancer cells. The more water you drink (and the more you pee) the faster you get that extra stuff out of your body. Also it helps to stay active. That is why I went into the office as much as I can. I do more walking at the office than I do at home. 

One other tip I had picked up somewhere online was to start taking the stool softner the night before chemo. I had a rough time the first round. I followed this tip for the rest of the chemo and things were alot easier.

Good Luck John.

illead's picture
illead
Posts: 857
Joined: Aug 2012

Hoping everything is going well and that you are dealing with the chemo okay.

You are in my thoughts,

Becky

john1947
Posts: 14
Joined: Nov 2015

Hi Becky,

I'm doing okay, first chemo was December 1st, took 9 1/2 hours.  It has not been too bad. 

I had 3 small lymph nodes on my neck that were 1cm or less and they are gone.  My spleen has stopped hurting when I breath deep but I can still feel that it is there.  On the day of first chemo my platelets were 78 and the nurse had to call DR for approval to proceed, which they did.  I go next Tuesday for check up and blood test.  I pray that my platelets will allow for the chemo on the 22nd, I don't want to skip any. 

John

illead's picture
illead
Posts: 857
Joined: Aug 2012

I was rereading the string and realized I did not comment on you actually getting the MCL diagnosis,  We were actually in Mexico selling our condo and it was a fiasco, so my brain was kind of mushy Undecided.  The first chemo is always longer, it should get a little quicker.  The rituxan is the slow one.  Bill's platelets were 33 believe it or not.  All his counts were extremly low so he had procrit shots for about a week before his chemo.  I'm thinking you will be okay.  Because of Bill's low blood counts and extreme symptoms (which almost killed him), his chemo was bendamustine (treanda) which is fairly new and not as harsh, he didn't even lose his hair.  I think that now they feel that the stronger the chemo, the longer the remission.  Bill relapsed in two years and is now on the target drug Ibrutinib.  He has been on it since March '14.  So like I said, there is much hope out there.  We were at the oncologist yesterday and he said, if you relapse again there is more out there and more coming.  We truly are able to keep MCL on the back burner and go on with our lives.  You will too.  Also remember that Bill was not long for this world when he was diagnosed and you caught it early.

My best,

Becky

john1947
Posts: 14
Joined: Nov 2015

Becky,

Thank you.  I will keep you updated wiith my progress.  All in all, it has not been that bad, I got ahead of all the side effects and had medication on hand to deal with it including the bone pain, Tylenol #3 worked.  My daughter is a Oncology Nurse Practioner and was with me all last week.  My wife keeps me hydrated and feeds me Pinto Beans at least three times a week, she said they have all the Iron, Fiber, Protein etc needed for a balanced diet, according to her they are natures perfect food.

John

illead's picture
illead
Posts: 857
Joined: Aug 2012

and our favorite bean!  I don't suppose refrying them in bacon grease is such a good idea Wink,  I will switch to olive oil.  It sounds like you are in great hands.

Hang in there,

Becky

john1947
Posts: 14
Joined: Nov 2015

I went to MD yesterday for blood draw and check up.  My WBC went for 50,000 to 13,000, RBC, HGB, HCT etc were all normal, Neut, Lymph and Mono,EO and BASO were all in normal range for the first time in 3 months.  Platelets were 58 but MD said they should go back up by next week.  I felt better yesterday and today almost normal. 

John

dan6807
Posts: 1
Joined: Oct 2016

Hi, 

Got diagnosed with SMZL in November 2015, Since then I have had 8 rounds of Rituxin and currently am up to half normal on the White Cell count. Mine came with Rheumatroid Arthritis but the tratment helped. Doctor is checking every 3 months now. My biggest problem is the bills still haven't been paid due to SSA and Florida Medicaid taking their time. I try to make it one day at a time and currently I don't feel bad but I know there is something when I try to work for any lenght of time as I start to feel weak. Already had four CT scans. Turned 62 last month guess it's time to retire.

djwilzig
Posts: 2
Joined: Apr 2017

I see a rheumatoligist who put me on meds for neuropathy. My daughter has RA and I was concerned about having it but for me the neuropathy appears  to be a side effec t  of 13 yrs of off and on Ri ttuxin therapy with loads of steroids etc for CLL. My side effect presents as gout or RA.

djwilzig
Posts: 2
Joined: Apr 2017

I've been diagnosed and living with smzl since last August and on Imbruvica.  I'd appreciate speaking with others who have this rare ailment

Concern
Posts: 2
Joined: Sep 2017

I also feel like a ticking time bomb because the surgeon told me I have had this cancer for 5 years and the lymphoma doctor said I would relapse and this cancer is incurable.  My spleen weighed 6 lbs and it was moving my organs out of place.  I want to know when this cancer comes back so I can live a good long life and enjoy my 2 sweet grandchildren.  Oh, by the way I'm 59 years young.

Louteck's picture
Louteck
Posts: 3
Joined: Feb 2017

Hi i'm Lou I too am battling SMZL, was diag. in 2015 but had symptoms for years prior but kinda ignored it.Spleen enlarged to 15,2 lbs 'was told it was a hernia' prior to the extreme enlargment. By the time I realized I better do something about this I was 3 bags of red blood cells low,couldn't lift my arms over my head,and my legs balloned I guess that's what happens when you put your work first.I opted for the spleenectomy it had so enlarged and where was all that toxin going if I used medicines to shrink it? Surgery went well lost a lot of blood but it appeared the surgical team took every precausion.Healed up pretty quick tryed to return to work that didn't workout to well took to much out of me.Besides I don't have a timeline on this thing, I'm told that it's nstage but that just means it shouldn't get worse and stay indolent for some time ?The time I have now belongs to my  family mainly  grandchildren .Also I too suffer from chronic cancer fatigue which seems to be a major complaint with cancer victims that I don't see being addressed considering it is such an importatnt factor concerning quality of life 

Ginger J
Posts: 1
Joined: Mar 2019

I was diagnosed in July 2018 and had 6 weeks of Rituxin infusions in a row, now every 8 weeks for two years. I stopped working in April 2018 when I was so exhausted and felt terrible with no idea what was wrong (I am now 62 and took early SS retirement). I know I am fortunate to have my spleen responding to the treatment, that I have a ten minute subq injection vs. IV infusion - but still feel poorly each and every day as well as exhausted.

Any advice on when I may feel better? I am trying to eat healthier (more fruits and vegetables) as well as walk 2x per day for 20 minutes. I cannot stop thinking about the fact I have cancer and feel poorly. I do spend time sewing quilts for Project Linus and pillow cases for Ryans Cases for Smiles as well as read.

 

Thanks for any thoughts and experience you may be willing to share.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3446
Joined: May 2012

Ginger, your diagnosis was less than a year ago.... often, that is much too little time to feel radically better.

You are dong all of the 'laymans' advice' right stuff:  Healthy diet, lots of exercise, keeping your mind active with meaningful activities.  Your energy should return, but it could easily still take an additional year or more. Hopefully not that long.

Check with your hematologist and see if it is safe and advisable for you to take a Super-B vitamin daily supplement.  They help me dramatically with energy.  Manufacturers claim it assists with mood also. B-12 is the main component in most "energy drinks," which I never use.  B-12 is water soluble, so should not build up in the metabolism.   "Super-B" is a marketing term, not a scientific one, so what is in any given manufacturer's Super-B may vary.  Usually, it is a lot of B-12, some B-6, B-1, B-3 vitamin C, and folic acid.  Be aware that Label claims on supplements are usually NOT FDA certified.

Do ask the doctor first, since cancer patients should take nothing without clearing it with the doctor,

max

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