I have low platelets but it is because I have low grade B cell Lymphoma/Leukemia - Lymphoproliferative Disorder. I am trying to find someone out there who can discuss this with me.
I have low platelets but it is because I have low grade B cell Lymphoma/Leukemia - Lymphoproliferative Disorder. I am trying to find someone out there who can discuss this with me.
Hi again, @elainejarrett. I wrote a lengthy reply the other day trying to connect you with other members who have similar lymphoproliferative disorders. You can find those here: https://connect.mayoclinic.org/comment/809414/
Have you looked into the links I provided? As I mentioned there are several types of B-cell lymphomas so the treatments can vary to the specific illness.
But some of the symptoms and complaints of the conditions are similar. Are there specific questions you’d like to know so that I can help answer them?
I did look at all the links. I have only ever been told that I have Lymphoproliferative disorder. There has been no mention of non Hodgkins etc. I cannot find anyone to connect with who is dealing with the same disorder and that is what I would like to do. So far, all your links do not help me with this.
I did look at all the links. I have only ever been told that I have Lymphoproliferative disorder. There has been no mention of non Hodgkins etc. I cannot find anyone to connect with who is dealing with the same disorder and that is what I would like to do. So far, all your links do not help me with this.
@elainejarrett, I did a search of Connect and found that @beverlysherman, @becsbuddy and @sherda have mentioned having a type of lyphoproliferative disorder in other discussions and may be able to provide some information or share their experience with you.
I did look at all the links. I have only ever been told that I have Lymphoproliferative disorder. There has been no mention of non Hodgkins etc. I cannot find anyone to connect with who is dealing with the same disorder and that is what I would like to do. So far, all your links do not help me with this.
Hello Elaine.
My name is Sherri and it seems as though we have a similar path. After many months of testing, poor labs, and enlarged lymph nodes and spleen, I was diagnosed this past December with CLL, a diagnosis that falls under the lymphoproliferative disorder umbrella. A bone marrow & lymph node aspiration confirmed the diagnosis.
Because there are many stages to this and every one reacts a bit differently, there is no one size fits all category. I can tell you the treatment most common seems to be a “watch and wait” path. That did not apply to me, as my labs and body indicated treatment was needed. I tried Gazvya which immediately did not work. I just finished my first month of Venclexta and 2nd dose of Rituxan and I am finally seeing labs within normal ranges. I can add that anxieties are real and I found myself not sleeping waiting for the results-sort of waiting for another shoe to drop. Sleep is very important. So is living your life as close to normal as possible. You have to listen to your body. You know it best. If you feel it, act on it. If it’s not there, celebrate that moment by living. Keep asking questions. I’m happy to talk or text. I hope this has helped in some small way. I feel like I am still learning, too.
Hello Elaine.
My name is Sherri and it seems as though we have a similar path. After many months of testing, poor labs, and enlarged lymph nodes and spleen, I was diagnosed this past December with CLL, a diagnosis that falls under the lymphoproliferative disorder umbrella. A bone marrow & lymph node aspiration confirmed the diagnosis.
Because there are many stages to this and every one reacts a bit differently, there is no one size fits all category. I can tell you the treatment most common seems to be a “watch and wait” path. That did not apply to me, as my labs and body indicated treatment was needed. I tried Gazvya which immediately did not work. I just finished my first month of Venclexta and 2nd dose of Rituxan and I am finally seeing labs within normal ranges. I can add that anxieties are real and I found myself not sleeping waiting for the results-sort of waiting for another shoe to drop. Sleep is very important. So is living your life as close to normal as possible. You have to listen to your body. You know it best. If you feel it, act on it. If it’s not there, celebrate that moment by living. Keep asking questions. I’m happy to talk or text. I hope this has helped in some small way. I feel like I am still learning, too.
I have been told nothing except that I have low grade B cell Lymphoma/Leukemia for which there is not cure but a good chance of remission once I start having any of the symptoms - night sweats, fevers. We could live quite a long time with this but I would like to know why you started treatment, the side effects and it sounds like it is working for you.
Of course.
During the test/lab phase, I was experiencing severe anemia, so I underwent to rounds of Venofer-an iron infusion, to get me stable enough until they diagnosed me. Each round was once a week for 5 weeks. My spleen had enlarged to 28cm, which is more than doubled its original size. I was fatigued, swollen and incredibly uncomfortable. I had shortness of breath and poor labs. I never experienced fevers and no increase in night sweats (I am in my 50s). I had low Red & white blood cells counts and low platelets. My liver showed signed of being fatty, and I am not a drinker. I was once told to think of it like diabetes. It’s not curable, but treatable, hence the listening to your body. I am told I might still need iron, as I have an absorption issue, but for now the treatment seems to be working. My kidney function was trending poorly, but it’s looking a bit more positive as of last labs. I can still run short of breath, but now I pause and lean into it. I’m trying to be more mindful and intentional. Side effects vary, but I can tell taking meds with food and staying hydrated have greatly improved them. Again, I did not experience diarrhea and the like. My nausea was/is minimal. I did have an issue with Tumor Lychis, which just means too many cells were dying at once and my body wasn’t getting rid of them fast enough, so I had to get hydration and an extra infusion of Rasburicase, to get rid of the high Uric acid. They were pretty on top of checking my labs, which happens often at the start of this treatment plan. Overall, I’m pretty new to this process. I expect to redo my PET scan between my 3rd 4th infusion, so about 6 weeks out. I still do labs, but not 2x a week- it’s monthly. Mentally, it can exhausting and anxiety ridden. I try hard not to dwell or stay in my own head. That tends to be isolating . I’m trying to set new goals and celebrate the ones I’ve accomplished. Overall, I feel pretty lucky. I’ve used available resources and they helpful.
Just remember your experience on this journey may not be identical to others. I hope you get to a place of understanding and comfort and above all else, a very long remission.
Of course.
During the test/lab phase, I was experiencing severe anemia, so I underwent to rounds of Venofer-an iron infusion, to get me stable enough until they diagnosed me. Each round was once a week for 5 weeks. My spleen had enlarged to 28cm, which is more than doubled its original size. I was fatigued, swollen and incredibly uncomfortable. I had shortness of breath and poor labs. I never experienced fevers and no increase in night sweats (I am in my 50s). I had low Red & white blood cells counts and low platelets. My liver showed signed of being fatty, and I am not a drinker. I was once told to think of it like diabetes. It’s not curable, but treatable, hence the listening to your body. I am told I might still need iron, as I have an absorption issue, but for now the treatment seems to be working. My kidney function was trending poorly, but it’s looking a bit more positive as of last labs. I can still run short of breath, but now I pause and lean into it. I’m trying to be more mindful and intentional. Side effects vary, but I can tell taking meds with food and staying hydrated have greatly improved them. Again, I did not experience diarrhea and the like. My nausea was/is minimal. I did have an issue with Tumor Lychis, which just means too many cells were dying at once and my body wasn’t getting rid of them fast enough, so I had to get hydration and an extra infusion of Rasburicase, to get rid of the high Uric acid. They were pretty on top of checking my labs, which happens often at the start of this treatment plan. Overall, I’m pretty new to this process. I expect to redo my PET scan between my 3rd 4th infusion, so about 6 weeks out. I still do labs, but not 2x a week- it’s monthly. Mentally, it can exhausting and anxiety ridden. I try hard not to dwell or stay in my own head. That tends to be isolating . I’m trying to set new goals and celebrate the ones I’ve accomplished. Overall, I feel pretty lucky. I’ve used available resources and they helpful.
Just remember your experience on this journey may not be identical to others. I hope you get to a place of understanding and comfort and above all else, a very long remission.
I cannot thank you enough for getting back to me. Just had some labs done - platelets are still low, my IGG is low too as well as my anion gap and a couple of other results. One of the tests is now showing I also have Hypothyroidism so one more thing to deal with. What is giving me hope is that your treatment seems to be working. We have an age difference as I have just turned 70. I am just hoping I can get through all of this to see my grandchildren for a few more years. Keep in touch. Thanks again.
I wish you the best possible outcome so you can enjoy your grandchildren, Elaine. My grand babies, latest one born this past Tuesday, have been a blessing. I’m grateful for my time with them. Just remember to breathe through and reach out. You’ve got this!
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Hi @dotti7 Doing a quick search I found several articles which talk about possibly increasing platelets through diet. Foods high in certain vitamins and minerals may help your body make and maintain platelets in your blood.
https://www.healthline.com/health/how-to-increase-platelet-count
~~
https://www.verywellhealth.com/how-to-increase-your-platelet-count-5190448
~~
https://www.healthgrades.com/right-care/blood-conditions/8-things-that-can-increase-your-blood-platelet-count
There’s also a discussion in the forum regarding nutrition for Immune Thrombocytopenia Purpura (ITP): What helps?
https://connect.mayoclinic.org/discussion/idiopathic-thrombocytopenia-prpura-itp/
However, while nutrients from foods may help with overall blood production because of an overall healthy diet, addressing the underlying cause for the platelet decrease is crucial. Depending on the diagnosis, there may be a need for treatment beyond diet.
Have you been diagnosed with a platelet disorder?
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4 ReactionsI have low platelets but it is because I have low grade B cell Lymphoma/Leukemia - Lymphoproliferative Disorder. I am trying to find someone out there who can discuss this with me.
Hi again, @elainejarrett. I wrote a lengthy reply the other day trying to connect you with other members who have similar lymphoproliferative disorders. You can find those here:
https://connect.mayoclinic.org/comment/809414/
Have you looked into the links I provided? As I mentioned there are several types of B-cell lymphomas so the treatments can vary to the specific illness.
But some of the symptoms and complaints of the conditions are similar. Are there specific questions you’d like to know so that I can help answer them?
-
Like -
Helpful -
Hug
1 ReactionI did look at all the links. I have only ever been told that I have Lymphoproliferative disorder. There has been no mention of non Hodgkins etc. I cannot find anyone to connect with who is dealing with the same disorder and that is what I would like to do. So far, all your links do not help me with this.
@elainejarrett, I did a search of Connect and found that @beverlysherman, @becsbuddy and @sherda have mentioned having a type of lyphoproliferative disorder in other discussions and may be able to provide some information or share their experience with you.
Hello Elaine.
My name is Sherri and it seems as though we have a similar path. After many months of testing, poor labs, and enlarged lymph nodes and spleen, I was diagnosed this past December with CLL, a diagnosis that falls under the lymphoproliferative disorder umbrella. A bone marrow & lymph node aspiration confirmed the diagnosis.
Because there are many stages to this and every one reacts a bit differently, there is no one size fits all category. I can tell you the treatment most common seems to be a “watch and wait” path. That did not apply to me, as my labs and body indicated treatment was needed. I tried Gazvya which immediately did not work. I just finished my first month of Venclexta and 2nd dose of Rituxan and I am finally seeing labs within normal ranges. I can add that anxieties are real and I found myself not sleeping waiting for the results-sort of waiting for another shoe to drop. Sleep is very important. So is living your life as close to normal as possible. You have to listen to your body. You know it best. If you feel it, act on it. If it’s not there, celebrate that moment by living. Keep asking questions. I’m happy to talk or text. I hope this has helped in some small way. I feel like I am still learning, too.
-
Like -
Helpful -
Hug
4 ReactionsI have been told nothing except that I have low grade B cell Lymphoma/Leukemia for which there is not cure but a good chance of remission once I start having any of the symptoms - night sweats, fevers. We could live quite a long time with this but I would like to know why you started treatment, the side effects and it sounds like it is working for you.
Of course.
During the test/lab phase, I was experiencing severe anemia, so I underwent to rounds of Venofer-an iron infusion, to get me stable enough until they diagnosed me. Each round was once a week for 5 weeks. My spleen had enlarged to 28cm, which is more than doubled its original size. I was fatigued, swollen and incredibly uncomfortable. I had shortness of breath and poor labs. I never experienced fevers and no increase in night sweats (I am in my 50s). I had low Red & white blood cells counts and low platelets. My liver showed signed of being fatty, and I am not a drinker. I was once told to think of it like diabetes. It’s not curable, but treatable, hence the listening to your body. I am told I might still need iron, as I have an absorption issue, but for now the treatment seems to be working. My kidney function was trending poorly, but it’s looking a bit more positive as of last labs. I can still run short of breath, but now I pause and lean into it. I’m trying to be more mindful and intentional. Side effects vary, but I can tell taking meds with food and staying hydrated have greatly improved them. Again, I did not experience diarrhea and the like. My nausea was/is minimal. I did have an issue with Tumor Lychis, which just means too many cells were dying at once and my body wasn’t getting rid of them fast enough, so I had to get hydration and an extra infusion of Rasburicase, to get rid of the high Uric acid. They were pretty on top of checking my labs, which happens often at the start of this treatment plan. Overall, I’m pretty new to this process. I expect to redo my PET scan between my 3rd 4th infusion, so about 6 weeks out. I still do labs, but not 2x a week- it’s monthly. Mentally, it can exhausting and anxiety ridden. I try hard not to dwell or stay in my own head. That tends to be isolating . I’m trying to set new goals and celebrate the ones I’ve accomplished. Overall, I feel pretty lucky. I’ve used available resources and they helpful.
Just remember your experience on this journey may not be identical to others. I hope you get to a place of understanding and comfort and above all else, a very long remission.
-
Like -
Helpful -
Hug
5 ReactionsI cannot thank you enough for getting back to me. Just had some labs done - platelets are still low, my IGG is low too as well as my anion gap and a couple of other results. One of the tests is now showing I also have Hypothyroidism so one more thing to deal with. What is giving me hope is that your treatment seems to be working. We have an age difference as I have just turned 70. I am just hoping I can get through all of this to see my grandchildren for a few more years. Keep in touch. Thanks again.
-
Like -
Helpful -
Hug
1 ReactionI wish you the best possible outcome so you can enjoy your grandchildren, Elaine. My grand babies, latest one born this past Tuesday, have been a blessing. I’m grateful for my time with them. Just remember to breathe through and reach out. You’ve got this!