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Chances of ITP preceding to CLL or HD

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14 years 2 weeks ago #11119 by ITPCanada
Chances of ITP preceding to CLL or HD was created by ITPCanada
bloodjournal.hematologylibrary.org/cgi/content/full/113/26/6511?maxtoshow=&hits=10&RESULTFORMAT=&fulltext=ITP+immune&searchid=1&FIRSTINDEX=0&sortspec=relevance&resourcetype=HWCIT

Chronic lymphocytic leukemia: ITP-CLL. The most common neoplastic processes linked to ITP involve the hematopoietic compartment, although rare patients with solid tumors have been reported. ITP develops in 1% to 5% of patients with chronic lymphocytic leukemia (CLL), an incidence approximately one-tenth that of autoimmune hemolytic anemia (AHA).51–53 Older age and advanced stage are independent risk factors for AHA, but the predictive value of these risk factors for ITP-CLL is less apparent.54 ITP occurs a mean of 13 months from the diagnosis of CLL but may precede it or develop at any time. Indeed, small CD19/CD5-positive clones may be found in bone marrow from older patients with ITP.

ITP-CLL is associated with a higher frequency of unmutated IgVH genes, more frequent involvement of the VH1 family, and shorter 5-year survival.54 There is no evidence the malignant clone is responsible for antibody production. ITP-CLL may also be precipitated by fludarabine or other purine analogs that accelerate loss of CD4+, CD45RA+ cells.53 There is concern about using purine analogs to treat ITP based on experience in AHA.53 ITP-CLL is somewhat less responsive to IVIG and prednisone,54 but promising results have been obtained with rituximab and cyclosporine.


Hodgkin disease
: ITP-HD. The prevalence of ITP–Hodgkin disease (HD) is estimated at 0.2% to 1%, with most cases occurring after the diagnosis of HD.56,57 In the British National Lymphoma Investigation Registry, 8 of 4090 patients with HD developed ITP after a median of 23 months,57 including 6 in remission. ITP often responds to treatment of HD and is rare in patients who have been in remission for many years.58 ITP is estimated to occur in 0.76% of patients with non-Hodgkin lymphoma without CLL and often precedes the diagnosis of lymphoma (n = 1850 non-Hodgkin lymphoma patients).

Large granular T-lymphocyte leukemia: ITP-LGL. Large granular T-lymphocyte leukemia (LGL) is a clonal proliferation of mature CD8+ T lymphocytes. Clonal populations of LGL cells are also detected in some patients with rheumatoid arthritis, and modest increases occur in some patients with ITP.60 Neutropenia, anemia, and mild thrombocytopenia are common in LGL leukemia. It is not clear whether the mechanisms underlying ITP in LGL leukemia, wherein LGL clonality and increases in the absolute CD8 count are sustained, are similar to reactive conditions in which the LGL count may be transiently or cyclically elevated.61 Severe thrombocytopenia, observed in approximately 1%,60 may result from suppression of megakaryopoiesis by LGL-mediated cytotoxicity.62 Treatment is directed against the LGL clone, using cyclophosphamide or cyclosporine.

Are we at increased risk for developing CLL,HD and LGL :(

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14 years 2 weeks ago #11123 by eklein
Replied by eklein on topic Re: Chances of ITP preceding to CLL or HD
That's interesting! What we need is the backward statistic from what these articles provide - how many ITP patients go on to develop CLL etc. Because maybe it's true for example that toe fungus appears in 35% of patients with CLL, and 43% of CLL patients eat strawberries daily. Does a higher incidence of strawberry eaters develop CLL compared to non-strawberry eaters?

I've never heard that ITP is a predictor of CLL - but I'm glad that our blood counts are more than just platelet counts, they do the whole CBC so I would think any warning signs would tend to show up?
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 2 weeks ago #11130 by Sandi
All I can tell you is what I have observed from many years on this Forum. I only remember one person developing a type of cancer after being diagnosed with ITP. Usually with CLL, it's the other way around...they have CLL and then become diagnosed with ITP years later.

I have seen a handful of people developing MDS after being diagnosed with ITP. I would say that is the most common after-ITP diagnosis other than autoimmune disorders.

I would say no - we are not at increased risk of developing CLL, Hodgkins or LGL. No more than the average person on the street. I think thrombocytopenia is a symptom of those illnesses and they can usually be diagnosed when the low platelets are discovered.

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14 years 2 weeks ago #11145 by ITPCanada
Replied by ITPCanada on topic Re: Chances of ITP preceding to CLL or HD
Thanks Erica and Sandi. I am a type of person who worries a lot about heath and scared of "C" word,(I lost my mother she had Glioblastoma Brain Cancer, She was very young when she died.)

I wish all of us should live long happy life and should be able to watch our children growing.

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14 years 2 weeks ago #11148 by

Sandi wrote: All

I have seen a handful of people developing MDS after being diagnosed with ITP. I would say that is the most common after-ITP diagnosis other than autoimmune disorders.


I have read this. I'm curious if anyone's doctor noted for them that some of the treatments for ITP (rituxan, vincristine) can cause treatment induced MDS? I know for my mom, they did not tell her at all that MDS was very much a potential issue after her cancer treatment.

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14 years 2 weeks ago #11150 by dhars11
Replied by dhars11 on topic Re: Chances of ITP preceding to CLL or HD
My hematologist once told me that ITP could be some kind of preparation for the more serious ill... maybe he's right, but for me, I am more scared of the side effects of the medication that might cause me more severe ill and develop some kind of illness that I don't have..

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14 years 2 weeks ago - 14 years 2 weeks ago #11152 by Lindy

patti wrote:

Sandi wrote: All

I have seen a handful of people developing MDS after being diagnosed with ITP. I would say that is the most common after-ITP diagnosis other than autoimmune disorders.


I have read this. I'm curious if anyone's doctor noted for them that some of the treatments for ITP (rituxan, vincristine) can cause treatment induced MDS? I know for my mom, they did not tell her at all that MDS was very much a potential issue after her cancer treatment.


My doctor did mention that I may develop MDS. My mother had MDS & quickly changed to AML & we lost her just after a few months. She also started with low platelets. So now I'm really worried. Its such a painful disease for both the patient & care giver. Tough...during the 3 months my mother suffered alot:( & I was physically & emotionally drained. I just can't imagine if this get repeated again.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 2 weeks ago #11159 by Sandi
I can't tell you guys not to worry, but worrying will not change things. You can spend time worrying about something that might never happen, or you can deal with what's in front of you and be thankful that's all it is right now.

I think we all need to be aware that other disorders are possible, but also unlikely. There are people who have been diagnosed with other autoimmune disorders after ITP and amazingly, they manage to survive. You just deal with it.

My mom had cancer too - an aggressive form of lymphoma. This was years before I had ITP. I have never once worried that it might also happen to me. If it's in the cards, it's in the cards, but somehow I doubt that is what I will be dealt. I ended up with Lupus and hopefully, that's enough!

Most of the time, MDS is very treatable. My friend's mother had it in her late 70's and it didn't stop her one bit from doing all of the things she normally did. The woman even amazed me - barely blinked an eye. She had low platelets, red cells and white cells. She was funny - she would give her blood work results to my friend and ask me to look it over. She always wanted to know what I thought about it. I never actually met her, but she knew I'd had ITP.

You have to realize that ITP does not "develop" into anything else. It can be a symptom of something that is already there, but isn't yet detectable. It can also be "just ITP" which is the case most of the time.

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13 years 8 months ago #15099 by alt8383
Replied by alt8383 on topic Re: Chances of ITP preceding to CLL or HD
My father was diagnoised with ITP 6 years back with his home base level at 35. This year he was rediagnoised with MDS stage 1 after his second BMBx. He is 77 and was given 2 years to live.

January this year my daughter was diagnoised with ITP and nothing so far has worked for her(prednisone allergy, IVIg lasted 1.5 weeks, tomorrow is WinRho, and if that does not work next week is spleenectomy) I am concerned she will develope MDS. her Hemotologist said MDS is a old mans disease, it is not likely that woman get it young or old.
Do you know of any woman having MDS and did they have ITP first?

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13 years 8 months ago - 13 years 8 months ago #15100 by

Sandi wrote: I have seen a handful of people developing MDS after being diagnosed with ITP. I would say that is the most common after-ITP diagnosis other than autoimmune disorders.

Just curious - do you think ITP developed into MDS or was ITP a symptom of these people's MDS?
www.marrow.org/PATIENT/Undrstnd_Disease_Treat/Lrn_about_Disease/MDS/index.html
"In MDS, the bone marrow does not make enough normal blood cells for the body. One, two or all three types of blood cells — red blood cells, white blood cells and platelets — may be affected. The marrow may also make immature cells called blasts. Blasts normally develop into red blood cells, white blood cells or platelets. In MDS, the blasts are abnormal and do not develop or function normally."


alt I'm sorry about your father's diagnosis - I wish him well and hope they are wrong about the 2 years! Here is another site for MDS
www.mds-foundation.org/

What is your daughter's count - good luck with WinRho, hope it works for her!

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 8 months ago #15103 by Sandi
Yes, I have known a woman in her 70's who developed MDS. She is doing very well after treating a few years ago. She had low platelets for about six months before the MDS diagnosis. The first bone marrow biopsy did not show any signs of MDS, but a second one months later, did.

I believe low platelets can be a first symptom of MDS, ITP does not develop into it.

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13 years 8 months ago #15106 by Lindy

alt8383 wrote: My father was diagnoised with ITP 6 years back with his home base level at 35. This year he was rediagnoised with MDS stage 1 after his second BMBx. He is 77 and was given 2 years to live.

January this year my daughter was diagnoised with ITP and nothing so far has worked for her(prednisone allergy, IVIg lasted 1.5 weeks, tomorrow is WinRho, and if that does not work next week is spleenectomy) I am concerned she will develope MDS. her Hemotologist said MDS is a old mans disease, it is not likely that woman get it young or old.
Do you know of any woman having MDS and did they have ITP first?



MDS is not an old man but older person disease.
My late mum had MDS then AML, we lost her within a year of diagnosis.
In 2009, I was diagnosed with low platelets & 'cos of my age (54 yrs)
there may be a possibility of MDS in the future. So I'm monitored by the
hemotologist & CBC done every 3 months. Later, I may need a BMB.

I understand your concern about MDS but I think its very unlikely
for your daughter which I believe must be very young. Hope WinRho works
for her.

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13 years 8 months ago #15109 by alt8383
Replied by alt8383 on topic Re: Chances of ITP preceding to CLL or HD
With my father he was told first that he had sticky platelets, and after his first BMBx they said ITP He just had his second BMBx in Feb 2011 and they changed the diagnosis to MDS Stage 1.
The Hemotologist mentioned that he was revising the diagnosis andwont say if it developed into or if he had the mds all the time and it just showed up. but with him all counts are low, WBC RBC and platelets now, they have not always been that way.

My Daughter is 24, she had a bout of ITP we are guessing when she was 16 although they could not confirm it she went into remission during testing and her counts stayed in the 200. Jan 2010 her platelets started to slide and it took her PCP to notice her platelets dropping till 2011 and at that point they were at 16. After the first IVIg it took 4 wks to drop to 26 and a week later they were less than 8 ( the machine does not go less than 8.4 and hers did not read anything). This past tuesday(2 wks after second IVIg) her platelets were 21 and yesterday she started to swell,petichea, and major fatique with chills, loss of balance ( we live in Florida and it was 90 yesterday).
I am hoping the WinRho will help. Thanks for all of your comments I am triing to do my research and what can happen next. Our motto with the 2 of them is going with the flow.

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