Please help!

I'm female, 28 years. I have ITP since April 2016. My haematologist told me that ITP can later lead (trigger) to lymphoma. I'm so so scared about this. You have experience with this? What do you know/heard about that? Please tell me if you have only ITP or do you have any other associated diseases!!!!

20 Replies

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  • Hi - I have had ITP since 2014 and no Doctor has ever told me that before. I really do not think this is true and would think you would get a lot of replies saying the same thing. I am currently on a trial drug called fostamatinib and platelets finally stable at 92 which is great for me. The Professor leading the trial has also never mentioned lymphoma or that ITP can lead to it.

  • Many thanks for your answer. I'm scared because all the haematologist where I have been for a second opinion, all told me the same. I'm living in Germany and I was to the most important doctors from my country, and all of them told me the same: ITP can to Lymphoma trigger or ITP can announce a Lymphoma.

    Currently I'm on 2,5 mg NPlate weekly with no side effects. I have no other diseases. I have ITP since my daughters birth. (2016)

    Have you ever heard about someone that spontaneously cured?

  • Hi Deniss, its Georgia again, ITP is common in pregnancy, did you have preeclampsia? My platelets dropped during labor and the emergency cesarean section which required 4 units of blood due to excessive bleeding; as my doctor said "darn it Georgia ever time I touched you, you wouldn't stop bleeding!" During my pregnancy my platelets were 300K and slowly dropped to 25K when my son was 8 years old. Nplate is given in "mcg" not mg, I am on 650 mcg per week to maintain my counts at 50 to 80K. I agree that the German MD's are among the best trained and most capable your are in good hands. Keep me posted, be well.

  • what is fostamatinib? How is the drug given to you?

  • Many thanks for your answer. I'm scared because all the haematologist where I have been for a second opinion, all told me the same. I'm living in Germany and I was to the most important doctors from my country, and all of them told me the same: ITP can to Lymphoma trigger or ITP can announce a Lymphoma.

    Currently I'm on 2,5 mg NPlate weekly with no side effects. I have no other diseases. I have ITP since my daughters birth. (2016)

    Have you ever heard about someone that spontaneously cured?

  • My hema mentioned that there was a small possibility. I've only been dx since June 2015, but I can't remember reading about anyone who has ITP having been dx with Lymphoma.

  • I also have never heard of a link between ITP and Lymphoma so I don't think you spend too much time worrying about that.

    I am someone who 'may' fit into the category of being spontaneously 'cured' if you want to call it that.

    I was deemed severe refractory as I did not respond to any treatments (6 off them) and stayed between 0-5 for 4 months. I then started on NPlate and after 5 weeks started to respond. I was on it for 5 months and then 1 week my body just stopped destroying platelets and returned to normal. I have stayed in the +200 range for 2.5 years now without any treatments and whilst I read that ITP cannot be cured, I like to consider myself the exception.

    I hope that this may give you some hope that you can overcome this illness.

  • Robert, did you require HLA-matched platelets when you did have transfusions?

  • HH

    I never received any platelet transfusions as they would have been destroyed very quickly and so it would have been a waste of time. When my platelet production was being stimulated by NPlate, I was destroying 150K platelets each week until I eventually stabilised. One week I even managed to destroy 750K but that was due to having received too much NPlate and my count had reached 1100K

  • My haematologist told me that ITP does NOT make me any more susceptible to cancers than anyone else. He's also an oncologist, so I suspect he knows about what he's talking.

    Ruth

  • Hello Deniss, I am male 28, I have tried every drug going nothing has responded, but I'm currently on N plate which last week my levels went to 15 so that's a start, that was on 1mg of N plate. Do you use 250mg viles or 500mg? What is your found on? I have never been told ITP can lead to cancer. I also see lots of oncologists so I'm sure they would of mentioned it.

    Thanks Tom

  • Hi Denise. I have had ITP for 25+ years with a steady count of 10 and for the last 15, I have no medication except when I had heart surgery and they wanted the count to be over 100. As to cancer, I have never heard of this. ITP is very often caused by a virus or the bone marrow reducing the production of platelets. Having been to many of the ITP conventions in the UK and spoken with some very eminent specialists in ITP from various countries, NEVER has cancer been mentioned as being linked to ITP. As to a cure, yes it can disappear as quickly as it comes or it can take years. It has a very small mortality rate which would indicate that it does not in itself cause cancer. I would suggest you join the ITP Support Association and then ask them. ITP is a condition you can live a near normal life with, just do not put yourself in a position that could cause a bleed. i.e. skiing, boxing or other extreme past-times!!

  • I never ask any questions I just believe my trusted hematologist I too was all over the place when I was told ( i was diagnosed December 2016 ) but now I feel ease you can drive yourself crazy with the do,s dont,s of this disease so I now go with the flow thanks to the advice and knowledge of this site it is a valuable source of information take care : ))).

  • ITP can lead to other illnesses but not necessary life threatening ones, and the instances referring to Lymphoma on itpsupport.org.uk/index.php... are so few that it is not worth worrying about. I have had ITP for 15 years and it is not worth stressing about, more an inconvenience occasionally.

  • Hello i have had ITP since 2006 and never once did my hemotologist mention to me that it will lead to lymphoma... I have also read other post and theres people who have had ITP for many more years and they never mentioned that it can trigger lymphoma... Im not gona lie having ITP is a roller coaster ride meaning your platlets will drop then go up and keep on doing that but for me i have been doing real good my last appointment with my hemotologist was in feb 2017 and my platlets are at 113,000 my last hospitalization was Sept 2015.. I do monthly blood draws and see my hemotologist either every 3 to 6 months. The medicine i get is IVIG which works for me.... But i only get that when i go to the hospital other than that i dont take any meds at all.. I also had my spleen removed back in 2007 which didnt help to remove it at all. So if by any means your docs tell u about spleen removal i personally would think about it twice or get another opinion. Best of luck to u

  • Hi, I was diagnosed with ITP in 2005, after a routine blood test. Had my GP contact me to explain my platelet count was 21 and had I possible ITP. Referred to a Haematologist, had a bone marrow carried out count was 11, had monitoring for another 12 months with another bone marrow and scan. The only symptom I had was bruising if I knocked myself. I lost my Mum to Non-Hodgkinsons Lymphoma and was extremely concerned but was told it was not genetic and there was no link. My platelet count was reduced when they tried steroids and brought lower but it seemed to reboot my system and bounce them up to 65. I no longer see my consultant as my platelet count is just what it is and the monitoring clearly proved if I get a virus then the platelets will drop. I had a blood count with my new GP Surgery recently and it was 105 which is brilliant for me, the GP suggested a yearly blood count. I don't stress about it and it is always scary when you are first told but forums like this are what have helped me to learn about ITP and carry on with a normal life.

  • I have been diagnosed with ITP and occasionally I get itchy rash on my body. Could this me sign of lymphoma?

  • Hi Deniss, my name is Georgia and I'm old enough to be your mother, I was diagnosised with ITP in early 1990's, have been treated with Nplate since 2010 and have never been diagnosis with lymphoma. I'm a Hem/Onc nurse involved in stem cell transplants; I have never claimed to know everything so I will search the medical literature for connection between lymphoma and ITP and get back to you. If you like to contact me please at so at yoyo0106@sbcglobal.net, my name on IPT group is kyriak51. I have only non-immune ITP which means that I do not have antibodies to my platelets. The I in ITP stands idiopathic which stands for a condition or disease for which the cause is unknown. What is the cause of your ITP, immune or caused by other "bleeding disorders"? I know your scared but the the more you know about your disease the more empowered you will be. Check out mayoclinic.org to learn about ITP and its treatment. I will get back to you when I research the lymphoma connection if any. Be strong, learn as much as you can about your treatment options and take one step at a time. kyriak51

  • Hi. I've had it in 2010 and I was on prednisone treatment for a year after this. As side effect from prednisone, I suffered rheumatoid arthritis. Someone helped me with arthrexin...for treatment, and I slowly regained the use of my joints again, pain free! I'm off of prednisone a long time now, but I have suffered with ashtma,pneumonia,gum disease, and fibroid in my womb, I dont know if the one got to do with the other, but I haven't been in for a platelet count, I think before I react panicky, I'll wait for the tell tale signs, the bruises and the bleeding to return. You have my sympathy but keep praying, and keep on your treatment, as holy as you can. Cecilia 43.

  • Have had ITP since 1995, and the docs in the UK and Belgium have never told me this.

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