Itp & Leukemia

Have been reading that ITP can lead to Leukemia...Yes, No, any thoughts? I hope not as I'm allergic to Rituxan.

[NickyD]

Hi mikki503, not heard of that link before. There are many more treatments you can try if the one you have been on does not work.

[sailor]

Nicky D is correct. As far as I am aware, because you have ITP does not mean to say you will develop Leukemia. I have ITP for 20+ years and not heard that. Don't believe all you read on the net.

[Lin6 in reply to sailor]

Hi I've just been diagnosed with itp, I'm on my second round of steroids. My platelets were 7 but up to 21 now. How have you managed all this time and are you still on steroids, hope you don't mind me asking

Regards

Lin

[sailor in reply to Lin6]

Hi Lin6. I took steroids for three weeks at the start. They did not work so I went onto Ivig which did. 10 years ago the experts agreed that if you could manage without medication why take it. I came off and now only take meds when I need to get the count unto a manageable level for surgery. So for 10+ years I have taken nothing and lived with a count of 10 very happily.The proviso is that this is only possible if you do not bleed spontaneously. I am lucky, I do not. Only had one bad bleed in all that time and last year had heart bypass with no problem after getting my count unto 100. After the op. it reverted to my norm but for some reason has started to climb and is now at the dizzy heights of 49!!! It really is a funny old condition.

Steroids do work for some but do not take them for long as there are some nasty side effects.There are plant of other drugs which you can take instead but of course the costs go up.

Hope this is helpful. Keep positive and if you are based in the UK, there are centres in various parts of the UK where experts in ITP are located.Look at the ITP web site above and under forums you should find a centre near you with the name of the consultant. You can always ask your GP for a second opinion if necessary.

[Lin6 in reply to sailor]

Thank you so much for your help.

Yeah I live in the north east of England and appear to have a good haematologist. I see him next Monday n hoping I get over 30count which he says is a good place for me to be at. Good news we don't have to stay on steroids for life as they are making me feel quite dizzy and have a very hot face??

Pleased your on the up and hope that it continues for you.

Many thanks for your reply

Lin

[sailor in reply to Lin6]

HI LIN6. No problem, pleased to help. The doctor in Newcastle is Dr. Kate Talks at the Royal Victoria Infirmary with a lead nurse Julie Vowles. Just bear in mind the count is not everything. Good luck next week.

[Lin6 in reply to sailor]

Hi Sailor

Thank you, I see a Dr George Holmes, at Wansbeck hospital but they are all based at Newcastle.

[SoporRose]

When I was diagnosed, I specifically asked my hematologist (who is also an oncologist) whether having ITP would make me more susceptible than most people to any kinds of cancers, and he said quite clearly that it would not.

Can you tell us where you've been reading about this link between the two? I'd be interested to know where I could find these studies.

Thanks!

[tennissenior]

Dear Mikki,

I've never read that ITP can lead to leukemia. I did read that MDS can. I have both. And SLE. Life has not been fun for the past 4-1/2 years. I've reached the point where I am sick of being sick. I'm not scared anymore of developing leukemia or any other disease that can get me out of the life I am living now. Unfortunately, there are no choices. Some days we are really sick and others, we feel somewhat better. But after time goes on, a person just gets disgusted. I'm there now.

[honey1986]

First time am hearing this

[scaryteacher]

I have read that if platelets drop continually, the underlying cause can be CLL; I think it was on the ITP Support Association website, but having ITP didn't lead to the CLL.

[Morgan in reply to scaryteacher]

Yes this was on the PDSA site re other blood disorders that ITP is secondary to - pdsa.org/resources/other-pl...

[Wenden59]

Hi, I was diagnosed with ITP in October 2013, I had 3 relapses in 8 months the last one I had 0 platelets. My hematologist/oncologist wanted to remove my spleen. I asked him to exhaust every other possible cause. We did a bone marrow biopsy and lucky for me we did it as I had lymphoma but we had caught it very early. I had four sessions of chemo which ended early September 2014 and (touch wood) my platelets have been good since. I still have to lose a lot of the weight I put on with the massive doses of steroid I was on but it is coming off. My doctor said the lymphoma can cause ITP, so I am lucky I got ITP because it made us find the lymphoma. That's my way of putting a positive note on things

[5bella5]

Hello: Got really scared after reading your post, so I spent several hours combing the web but didn't see any reference to ITP causing Leukemia. So I called my Hematologist/Oncologist and she did not agree that ITP would cause Leukemia. Got to be careful what you read. Always best to check with your Physican.

Take care, good luck.

[sapper415]

I don't know if this will help anyone however I hope it does! I was diagnosed with itp at the age of 49 and given 3to5yrs to survive I am now 73 my count is usually around 28 to 69 it's not as high as that very often an added complication is tcell luekeamia the result is the higher my platelet count the lower my lymphocytes and vice versa I refused a splenectomy 25 years ago and at this time I do not have treatment but I have 3monthly blood tests at my gp and Addenbrookes. in the event of a platelet crash a big dose of steroids sorts me out having said that I find that treating the infection that caused the platelet drop is the best way the platelets then generally sort themselves. I still get bruises easily and a cut will bleed a lot however there is a lot to be said letting the body look after its self as far as possible. I hope this post helps good luck and many platelets.