Back again and I think I have ITP, it's been a journey

I was here a month ago and a lot has happened in the last 30 or so days. I'm sure I'm not the only one that has had a long journey trying to find out what they have and I think I'm still in the figuring out stage. Here is the short version.

I was having some issues swallowing and it was time for a colonoscopy, so we did that and an endoscopy. It was the GI doctor who saw me prior to the procedures said to me: "what are they doing about your low platelets?" My answer was: "Huh?"

He did the endo/colon on me. I have eosinophils in my esophagus and GI system. He then set me up with a local hematologist, I live in a small community with a supposedly good but smallish community hospital. This hematologist did a bone marrow biopsy and 10 days later told me I had either HES (which was what he thought) or MDS. He referred me to Dana Farber Cancer Institute in Boston.

10 Days ago I went there and saw a great hematologist who ran tons more blood work (15 tubes, the most I've ever had drawn) and she got the tissues from my bone marrow biopsy so Farber could run them again and do some more testing on them. At that appointment she told me she didn't think I had HES she said my eosinophils weren't high enough. So we were looking at MDS.

I heard from her yesterday and she said 99% of my extensive blood work is fine, totally normal. At this point, I don't have lymphoma or MDS. I do have a few funky things that Farber is going to watch in both my blood and bone marrow but it is her opinion that I don't, at this point, have cancer. She did say I have ITP, but for now, she is going to do monthly blood work on me to get a feel for what it's doing.

Everyone in this group sounds like a doctor and it's hard for me to understand what you're talking about. I don't know if/when I'll ever get there. So please excuse me if I misstate something or sound clueless, I am. My platelets locally by the GI doctor were stated in 2 digits. The doctor at Farber stated them with lots of zeros after them (which I know is the actual numbers) so I'm not sure how they are actually referred to. But over the past 5 years of physicals they have been between 30 and 60 (again not sure how you say that or how many zeros should be there). My primary at the time, I've since found a new one, never thought to question those results, even though they were low and in bright red numbers from the lab. Go figure, nor did she ever mention them to me.

I've had some symptoms over the past few years, the major one being extreme fatigue that my previous primary wrote off as, "that's what happens when you get older." I bleed when I get a scrape for a long time, I bruise really easily, and get nosebleeds from time to time.

So I just wanted to say that I've had a very emotional few weeks and at least for now I'm back here where I started. I'd like to learn more about ITP and will do a lot of reading here and I'm asking for easy to understand links that might help me figure this out more. If in fact, I don't develop into some other cancer type of disease I'm reasonably sure the doctor at Faber won't continue to see me, it's a huge cancer center and ITP isn't cancer. So I don't know what I'll do then, I'm assuming I will need to continue to see a hematologist and I didn't like the one at my local hospital, personality wise and he told me I had HES that was a rough few weeks.

So any advice, links and/or anything else would be very helpful. Many thanks for listening. I have access to much of my blood work results which is in a patient portal online from Farber. I don't have access to the pathology reports on my bone marrow and such yet but I am requesting copies of them from Farber.

Susan

pixiesusan wrote: I was here a month ago and a lot has happened in the last 30 or so days. I'm sure I'm not the only one that has had a long journey trying to find out what they have and I think I'm still in the figuring out stage. Here is the short version.

I was having some issues swallowing and it was time for a colonoscopy, so we did that and an endoscopy. It was the GI doctor who saw me prior to the procedures said to me: "what are they doing about your low platelets?" My answer was: "Huh?"

He did the endo/colon on me. I have eosinophils in my esophagus and GI system. He then set me up with a local hematologist, I live in a small community with a supposedly good but smallish community hospital. This hematologist did a bone marrow biopsy and 10 days later told me I had either HES (which was what he thought) or MDS. He referred me to Dana Farber Cancer Institute in Boston.

10 Days ago I went there and saw a great hematologist who ran tons more blood work (15 tubes, the most I've ever had drawn) and she got the tissues from my bone marrow biopsy so Farber could run them again and do some more testing on them. At that appointment she told me she didn't think I had HES she said my eosinophils weren't high enough. So we were looking at MDS.

I heard from her yesterday and she said 99% of my extensive blood work is fine, totally normal. At this point, I don't have lymphoma or MDS. I do have a few funky things that Farber is going to watch in both my blood and bone marrow but it is her opinion that I don't, at this point, have cancer. She did say I have ITP, but for now, she is going to do monthly blood work on me to get a feel for what it's doing.

Everyone in this group sounds like a doctor and it's hard for me to understand what you're talking about. I don't know if/when I'll ever get there. So please excuse me if I misstate something or sound clueless, I am. My platelets locally by the GI doctor were stated in 2 digits. The doctor at Farber stated them with lots of zeros after them (which I know is the actual numbers) so I'm not sure how they are actually referred to. But over the past 5 years of physicals they have been between 30 and 60 (again not sure how you say that or how many zeros should be there). My primary at the time, I've since found a new one, never thought to question those results, even though they were low and in bright red numbers from the lab. Go figure, nor did she ever mention them to me.

I've had some symptoms over the past few years, the major one being extreme fatigue that my previous primary wrote off as, "that's what happens when you get older." I bleed when I get a scrape for a long time, I bruise really easily, and get nosebleeds from time to time.

So I just wanted to say that I've had a very emotional few weeks and at least for now I'm back here where I started. I'd like to learn more about ITP and will do a lot of reading here and I'm asking for easy to understand links that might help me figure this out more. If in fact, I don't develop into some other cancer type of disease I'm reasonably sure the doctor at Faber won't continue to see me, it's a huge cancer center and ITP isn't cancer. So I don't know what I'll do then, I'm assuming I will need to continue to see a hematologist and I didn't like the one at my local hospital, personality wise and he told me I had HES that was a rough few weeks.

So any advice, links and/or anything else would be very helpful. Many thanks for listening. I have access to much of my blood work results which is in a patient portal online from Farber. I don't have access to the pathology reports on my bone marrow and such yet but I am requesting copies of them from Farber.

Susan

Welcome back Susan,

It sounds like you have had some good news and I'm so happy that you didn't end up having HES or MDS. That is absolutely wonderful!

ITP is a picnic in the park compared to the sound of those, so I'm happy that all of the testing ended up normal for you.

Regarding platelet numbers, people tend to do it either way. It's sometimes easier to talk about counts of 30 or 40, but we do mean 30,000 and 40,000. Some people will write 30K, but it's all the same thing. It sounds like your numbers are between 30 and 60 (Or 30K and 60K if you'd rather), which is generally a high enough count to not require any treatment. As long as you don't have any lifestyle factors that put you at a higher risk for injury (skydiving, rock climbing, etc.) and you don't have any major symptoms (lots of active bleeding), then most good hematologists recommend that you get periodic lab work to check on your counts and don't recommend treatment. The treatments often cause more problems than the ITP itself, so the name of the game is to do the absolute minimum treatment that you can to achieve safe counts. Safe counts are considered anything 30 or above. Normal counts are much higher, and some bad hematologists (there are a lot of them, sadly!), pump their patients full of multiple treatments trying to achieve normal counts. Not at all what you want

It sounds like you found a hematologist that you like at Farber. Definitely don't assume that because it is labeled as a "cancer center" that that is all they treat there. Most of my hematologists throughout the years have been hematologist/oncologists and I have seen them at cancer centers. You can certainly inquire if your doctor would follow you as an ITP patient, because it can be hard to find good doctors and you don't want to let a good one go unless you have to. Some doctors, of course, specialize in particular cancers (I lost one hematologist I liked because she shifted her practice to exclusively specialize in breast cancer), but I would think that since you are an existing patient with this doctor and she knows the most about what testing you have done, you should be able to stay with her.

Don't worry too much about things seeming confusing in the beginning. Some of us on here are better at reading the scientific articles than others, and over time you will start to develop a vocabulary to talk about things ITP related. Read through some of the archives and I think you'll find a good number of links to read about ITP that are written without so much technical language (there is an introduction to ITP written for nurses that Anne usually shares that is quite readable and good for new patients)

Again, welcome and feel free to ask all kinds of questions. There is a great wealth of knowledge and expertise here

Well here is a stupid question, where are the archives? I see something called Excellent Advice for the newly diagnosed, Frequently Asked Questions and Great ITP Resources and Research. Obviously, I'm going to read all of those but I just want to be sure I'm not missing anything!
Thanks so much.
Susan

The archives are just a search. There is a search button and you can search any words or treatments that you'd like to look up. Chances are, there has been a discussion about nearly every topic. Reading the Excellent Advice for Newly Diagnosed is a good start!

Mom is right. 30,000 = 30 = 30k. It's all the same.

I'm glad you got some good news and welcome to the group!

Thanks, Sandi! I've been reading and searching all morning. I'm sure I will have lots of questions going forward. I'm thrilled with the good news.

Hopefully, we'll have lots of answers.

Susan,
After having a bad hematologist I ended up with a GREAT one that is located at a cancer center and is quite a drive away for me - so we communicate by e-mail and I physically see her once a year. My hematologist sent a standing order for CBC and LFT (Liver function test) to my local doctors office and I have my draws done there and have the results sent to my hematologist. (the liver function test is because right now I am treating with Promacta).
My point is - if you have found a good hematologist that you communicate well with then there are ways to make it work

I dont know where you live but I am on the south shore/ boston. I go to Dana Farber Community Cancer care. I have ITP, not cancer but the hematologists/oncologists at Dana Farber take non-cancer patients.

I'm on Cape Cod, so we're not too far away. Ok I was worried I'd have to give up my doctor at Dana Farber if I didn't have cancer. Good to know and thank you very much for letting me know this.

I go to Dana Farber Community Cancer Care in Weymouth. It is a good place with 7 hematologist/oncologists. They have taken good care of me for the past 18 years. So if you didnt want to have to drive in to Boston that would be a place you could consider.

Well that is a lot closer and I will consider it. I really love my doctor at Dana Farber, since I just got diagnosed I'm going to stick with her until I get more comfortable with this and then I will look at Weymouth. I'm sure there are good doctors there too. Thanks for that information, I really appreciate it.