I was diagnosed 2 years ago although it started in 2019. It is an indolent cancer but my platelets are hanging in around 95 but my spleen is getting quite large. I get blood work every 6 months and am told if I start to feel crummy, then obviously go in. It is constantly on my mind. There is a trial going on at Mayo Clinic in Rochester Mn and my oncologist said it would be a game changer for the likes of us. Fingers crossed.
I was diagnosed 2 years ago although it started in 2019. It is an indolent cancer but my platelets are hanging in around 95 but my spleen is getting quite large. I get blood work every 6 months and am told if I start to feel crummy, then obviously go in. It is constantly on my mind. There is a trial going on at Mayo Clinic in Rochester Mn and my oncologist said it would be a game changer for the likes of us. Fingers crossed.
I was diagnosed January at of this year. Spleen was close to 23 and was in pain and hadn't been able to eat. Bone biopsy confirmed on a Thursday and by Monday was doing chemo/immunotherapy. Had 6 rounds of Rituxin and Bedamustine. Spleen decreased to about 15 . Am back on wait and watch but am feeling better. Much luck!
I was diagnosed January at of this year. Spleen was close to 23 and was in pain and hadn't been able to eat. Bone biopsy confirmed on a Thursday and by Monday was doing chemo/immunotherapy. Had 6 rounds of Rituxin and Bedamustine. Spleen decreased to about 15 . Am back on wait and watch but am feeling better. Much luck!
I was diagnosed January at of this year. Spleen was close to 23 and was in pain and hadn't been able to eat. Bone biopsy confirmed on a Thursday and by Monday was doing chemo/immunotherapy. Had 6 rounds of Rituxin and Bedamustine. Spleen decreased to about 15 . Am back on wait and watch but am feeling better. Much luck!
I believe Bedamustine is the chemo drug. I had some nausea at first but they gave me plenty of meds that worked. They also put a Neulasta pod on my arm for 24 hours after each treatment believe it or not Claritin for the pain
I walked every day to combat the fatigue
I have looked at the sharing on this site and appreciate the comments. I myself have been diagnosed with splenmatic marginal zone lymphoma about 18 years ago. I was on watch and wait until about four years ago when I started having symptoms from a very enlarged spleen. Fortunately, in the area where I live my oncologist that was following me decided to retire so I decided to get a second opinion at Mayo clinic, and immediately was informed that my spleen was extremely enlarged. Their solution at that time, which was four years ago, was to have the spleen removed with no other treatment.
It is now over four years since my spleen has been removed and I’ve been doing very well, I just get checked about once every six months.
I have looked at the sharing on this site and appreciate the comments. I myself have been diagnosed with splenmatic marginal zone lymphoma about 18 years ago. I was on watch and wait until about four years ago when I started having symptoms from a very enlarged spleen. Fortunately, in the area where I live my oncologist that was following me decided to retire so I decided to get a second opinion at Mayo clinic, and immediately was informed that my spleen was extremely enlarged. Their solution at that time, which was four years ago, was to have the spleen removed with no other treatment.
It is now over four years since my spleen has been removed and I’ve been doing very well, I just get checked about once every six months.
Welcome to Connect, @bmisslich and thank you for also sharing your experience with splenmatic marginal zone lymphoma. Stories like yours can have such a positive impact for others who are recently diagnosed. You went along 14 years before you required treatment and then had your spleen removed 4 years ago without issue. That’s really encouraging for other members!
What was the recovery time after your spleen was removed? Are there any precautions you need to follow?
Welcome to Connect, @bmisslich and thank you for also sharing your experience with splenmatic marginal zone lymphoma. Stories like yours can have such a positive impact for others who are recently diagnosed. You went along 14 years before you required treatment and then had your spleen removed 4 years ago without issue. That’s really encouraging for other members!
What was the recovery time after your spleen was removed? Are there any precautions you need to follow?
My recovery time was only about two months. It was major surgery due to the size of the spleen.
The surgery was in November and I was back to cross country skiing in January the next year.
Of course, without a spleen, I have to be more cautious about getting a bacterial infection. I usually carry a bottle of antibiotics with me, and if I have a significant wound or injury I can use the meds
Connect
Connect
Like
Helpful
Hug
I was diagnosed 2 years ago although it started in 2019. It is an indolent cancer but my platelets are hanging in around 95 but my spleen is getting quite large. I get blood work every 6 months and am told if I start to feel crummy, then obviously go in. It is constantly on my mind. There is a trial going on at Mayo Clinic in Rochester Mn and my oncologist said it would be a game changer for the likes of us. Fingers crossed.
-
Like -
Helpful -
Hug
1 ReactionI am close to MD Anderson. Not sure if i need a second opinion or not. Have lab work dec 5th. I do have an enlarged spleen 20.7
I have had a bone marrow biopsy and aspiration. You are fortunate that you are close to MD Anderson.
I was diagnosed January at of this year. Spleen was close to 23 and was in pain and hadn't been able to eat. Bone biopsy confirmed on a Thursday and by Monday was doing chemo/immunotherapy. Had 6 rounds of Rituxin and Bedamustine. Spleen decreased to about 15 . Am back on wait and watch but am feeling better. Much luck!
-
Like -
Helpful -
Hug
2 ReactionsI have heard Rituxin works. Not heard of Bedamustine. How did you do on chemo?I am so glad you are feeling better. I am still on watch and wait.
That is good. Just on wait and watch. Spleen is 20.7. Have some issues with feeling full but no pain yet.
I believe Bedamustine is the chemo drug. I had some nausea at first but they gave me plenty of meds that worked. They also put a Neulasta pod on my arm for 24 hours after each treatment believe it or not Claritin for the pain
I walked every day to combat the fatigue
I have looked at the sharing on this site and appreciate the comments. I myself have been diagnosed with splenmatic marginal zone lymphoma about 18 years ago. I was on watch and wait until about four years ago when I started having symptoms from a very enlarged spleen. Fortunately, in the area where I live my oncologist that was following me decided to retire so I decided to get a second opinion at Mayo clinic, and immediately was informed that my spleen was extremely enlarged. Their solution at that time, which was four years ago, was to have the spleen removed with no other treatment.
It is now over four years since my spleen has been removed and I’ve been doing very well, I just get checked about once every six months.
-
Like -
Helpful -
Hug
3 ReactionsWelcome to Connect, @bmisslich and thank you for also sharing your experience with splenmatic marginal zone lymphoma. Stories like yours can have such a positive impact for others who are recently diagnosed. You went along 14 years before you required treatment and then had your spleen removed 4 years ago without issue. That’s really encouraging for other members!
What was the recovery time after your spleen was removed? Are there any precautions you need to follow?
-
Like -
Helpful -
Hug
1 ReactionMy recovery time was only about two months. It was major surgery due to the size of the spleen.
The surgery was in November and I was back to cross country skiing in January the next year.
Of course, without a spleen, I have to be more cautious about getting a bacterial infection. I usually carry a bottle of antibiotics with me, and if I have a significant wound or injury I can use the meds
-
Like -
Helpful -
Hug
2 Reactions