anyone fighting SMZL splenic marginal zone lymphoma

Lynda62

Jack Y said:

Thank you all.

I sure agree with you Lindary.  I have learned my lesson and will sure do what you recommended. 

Spleenic Lymphoma

Hi Jack, I sure hope your wife is getting better. I to have had Spleenic Lymphoma in 2011 I had my spleen removed it was 2kg - not sure in pounds what that is - then I had 2 years of ritux - so far so good. I have been fine but Im beginning to wonder what the next step will be.  My prayers are with you xx

Jack Y

The worst day of my life.

Yesterday at 2:48 AM Isabelle entered heaven.  My heart is broken.  I miss her terribly.   Good luck to all of you and keep fighting the fight.

 

Rocquie

Jack Y said:

The worst day of my life.

Yesterday at 2:48 AM Isabelle entered heaven.  My heart is broken.  I miss her terribly.   Good luck to all of you and keep fighting the fight.

 

Jack

Jack, I am so sorry to hear about your loss of your beloved wife, Isabelle. As time passes, may your memories of her bring a smile to your face rather than tears to your eyes. She was very courageous and you were her devoted and loving caretaker. I know that meant so much to her. 

Blessings,

Rocquie

 

lindary

Rocquie said:

Jack

Jack, I am so sorry to hear about your loss of your beloved wife, Isabelle. As time passes, may your memories of her bring a smile to your face rather than tears to your eyes. She was very courageous and you were her devoted and loving caretaker. I know that meant so much to her. 

Blessings,

Rocquie

 

Jack

Sorry to hear of the loss of your dear wife. Prayers that you find comfort in your memories of times past.

Linda

Max Former Hodgkins Stage 3

Jack Y said:

The worst day of my life.

Yesterday at 2:48 AM Isabelle entered heaven.  My heart is broken.  I miss her terribly.   Good luck to all of you and keep fighting the fight.

 

Bless You

 

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

Max Former Hodgkins Stage 3 said:

Bless You

 

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

Can't wait

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

 

lindary

Jack Y said:

Can't wait

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

 

loss

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

SMZL

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

john1947

Going Wednesday for diagonisis

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.

 

steve5k

SMZL

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

illead

john1947 said:

Going Wednesday for diagonisis

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.

 

MCL

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

john1947 said:

Going Wednesday for diagonisis

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.

 

MCL

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

illead said:

MCL

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

MCL

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

john1947 said:

MCL

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.

 

Hi John

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

illead said:

Hi John

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

 

MCL

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

john1947 said:

MCL

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

Work and Chemo

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.

dianevanv

steve5k said:

SMZL

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

I was Diagnosed with SMZL March 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.

illead

lindary said:

Work and Chemo

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.

Hi John

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

You are in my thoughts,

Becky

john1947

illead said:

Hi John

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

You are in my thoughts,

Becky

Chemo

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

john1947 said:

Chemo

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

Hi again

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 .  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