needing surgery but not for spleenectomy

Newly diagnosed with both ITP and Thyroid cancer. They want me to have a total thyroidectomy ASAP. My count last week was 34. Not on treatments right now because I was doing well at this level and they were just doing levels weekly to see what the numbers were trending. It is all so new, only 3 weeks since diagnosis. I scheduled an appointment with my hematologist because they want me to get clearance. The ENT doctor told me that just getting platelets prior to having surgery won't work and may actually make it worse due to a response from my immune system that could make my numbers go even lower. (never heard that). Has anyone been in this pickle? would they give you that IVGA infusion? The surgery is scheduled for 1/31/17. Thanks!

Your ENT is right. I'm happy that he knows that! Platelet transfusions do not work for people with ITP; the platelets are destroyed as fast as they go in. Transfusions can also result in Post Transfusion Purpura which can cause counts to drop lower than they were before. Hypersensitivity reactions and bacterial infections are also risks with transfusions. The only time they should be used for ITP is if there is serious bleeding occurring.

Your Hematologist should give you direction regarding treatment. Most get IVIG in a situation like yours, but don't wait until the last minute. It doesn't always work and you need to know that ahead of time. Steroids can work also, but are not good prior to surgery due to increased risk of infection, slow healing and shock to the adrenals due to surgery.

Jane, my son had two weeks of romiplostim (nplate) injections prior to some minor surgery. It got his count up to about 70 which is very safe for surgery and had zero side effects that he noticed. Worked a treat! I hope your surgery and recovery go well.

Thank you for the reply Miss Sandi. I have an appointment with my Hemotologist 1/10/17 and by then will have a few more weeks of lab work to evaluate. So if you get that IVIG treatment, it is not a quick fix? For some reason I have the impression that you get that, and you will zoom up like magic. I understand it is temporary. I hate to try steroids too. I already have type 2 diabetes. I hope my Hemotologist has some tricks up her sleeve. According to the ENT Thyroid is the second bloodiest organ in the body. could be a challange for the surgeon and me.

Thank You, never heard of these treatments. Are these things in the USA? Glad your son did so well.

Jane:

Counts can zoom up like magic for many people after IVIG, but occasionally, IVIG does not work for some. You're right, it is generally temporary.

Oh, the more I learn, the less I know LOL! I go from feeling scared one day to feeling like "what am I worried about" the next. Today I am scared lol.

Don't be scared. They will get your counts up, there are several ways to do that.

Jane you have come to the right place to get emotionally confused about a subject, LOL

With a starting count of 12 they gave me the equivalent bags of platelets to raise a normal person up to about 130 (=4*30+ 12) before my appendectomy this summer. Tests indicated the count was probably around 70 to 80 during the laproscopic operation. I think the surgeon wanted a count of 50 or above.

Since then I've had IVIG. If I were in your shoes, no doubt I would go with IVIG. But there is a difference. As Sandi was pointing out, no one knows yet if you are one of the IVIG responders, like me, or someone that doesn't. Like rolling the dice, the statistics are your chances are very good that you will respond. As I recall the number is like 80% that you'll respond.

If you end up not responding it won't be that bad. Your chances are also very good, and the risks low, with either platelet transfusion or Promacta. For a transfusion they probably won't reschedule the operation, with the Promacta they will.

Also, Promacta may be a blocking issue with the insurance company. Their procedures normally require one to try either steroids or IVIG, and fail, before they will authorize payment for Promacta.

Great info! Thank you so much. I need to hear other people's experiences with surgery. I know the surgery could be delayed to wait for a better platelet count but who wants to let cancer hang around any longer. I want that thyroid gone yesterday!!!!