Connect
Needing help understanding ET and how it affects my life
I’m 28 and have not been formally diagnosed with Essential Thrombocythemia, but my platelet counts have been consistently high since I was at least 16 (and by “high” I mean 800,000 to 900,000). I found out donating blood, and now I’m a deferred donor because of this blood issue. I had a doctors appointment around the same time and the doctor ordered my blood work to be redone because they thought they had mishandled it because the readings were high. All of my other blood work is fine. The doctor told my dad to take me to the children’s hospital in Dallas, but he never did. I haven’t been able to afford health insurance, so I wasn’t able to get my platelets checked again until about three years ago. I got yet another referral to a cancer center, but because I didn’t have insurance at that time either they refused to make me an appointment. I finally got insurance through my job and tried again this year, but the cancer center doesn’t take my insurance and I can’t afford to pay $500 per visit not including testing. I highly expect to need a bone marrow biopsy. Over the past couple years I’ve noticed I’m getting sicker. It takes longer for me to recover than everyone around me. My spleen gets uncomfortable sometimes, but conveniently not when I actually have an appointment. I don’t know what to do. I’m so anxious about living with this disorder and not being able to afford to even properly get diagnosed let alone manage it. I’m worried if I somehow get the money to get a diagnosis that it will be harder to get on insurance because it’s a type of cancer. Does anyone have any advice for managing this without being able to see a doctor? Or any advice on resources I could possibly use to help me be able to see the specialist I need to? I’m in Texas if that helps.
Like
Helpful
HugInterested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Connect
call the cancer foundation they will be able to help you find the proper doctor and help with the payments.
I also have ET and they gave me a drug called hydrea for 45 pills it only costs $25.00 and my platlets dropped from 700,000 to 450000.
I hope this helps.
Good Luck
-
Like -
Helpful -
Hug
2 ReactionsPlease inquire with case management or social services through your hospital. They are there to assist you in getting health insurance.( Medicaid) Once that happens your meds should be covered through insurance, or with a minimal . The cancer center has social workers. That is their job. Wishing you the best.
-
Like -
Helpful -
Hug
3 ReactionsIs there a specific cancer center? The one in my town I’ve contacted twice with referrals from two different doctors and they won’t make me an appointment. Can I contact any hospital? What do I ask? I also have anxiety, so this is probably harder than it should be for me. Thank y’all for all the information so far.
-
Like -
Helpful -
Hug
1 ReactionThere are a few things you could do. One is to contact you local hospital. Perhaps a county hospital and ask for the social services or case management department. Also you can circle back to the doctors who made the initial referrals and ask to speak to someone in their office for resources. There also must be county offices in a nearby city or town you live in that can help you. Best of luck. So sorry.
-
Like -
Helpful -
Hug
2 ReactionsFind a good oncologist. That's what I did and they see me about every 4 months and check my blood. I have been on hydroxyurea since 2014. It definitely helps to keep my ET numbers to at least an acceptable amount.
-
Like -
Helpful -
Hug
3 ReactionsTry to find a good hematologist-oncologist ET is quite rare, so might just take a good doctor who wants to do research to help you.....Best wishes....v
-
Like -
Helpful -
Hug
2 ReactionsI am so sorry. My doctor told me when I asked was this cancer said no not yet. He said it was a rare blood disease. I will be praying for you to get insurance and that can see the hematologist and maybe get some answers
-
Like -
Helpful -
Hug
2 ReactionsThank you! I’m hoping I can soon. In the meantime I’m just worried about the what ifs while it’s not being managed by medication. It’s been over a decade, but answers would be so nice and comforting.
-
Like -
Helpful -
Hug
1 ReactionI don't have any suggestions relative to the cost associated with medical care (sorry). But I do think it is important for you to find care - and the right care. There are thousands of hematologists out there, but MPNs (of which ET is one) is so rare that many hematologists just are not knowledgeable in this field. And if you are going to get to the bottom of your diagnosis and get on the right course of treatment, I would urge you to start with a known expert. The following website has some good information and a list of proven doctors.
https://mpncancerconnection.org/2017/12/what-is-an-mpn-specialist/
Also, you mention that you are in TX, and it is my understanding that MD Anderson has extensive expertise in MPNs. A link to their website:
https://www.mdanderson.org/cancer-types/myeloproliferative-neoplasm.html
And here is one more website with some helpful questions to ask your doctor.
https://www.mpnresearchfoundation.org/find-a-hematologist/
Certainly worth it to visit with a specialist and get initial bloodwork and genetic testing. A BMB can be pricey, but may be able to be deferred (I didn't have one for several years after diagnosis myself). As others have pointed out, some of the treatment is low cost. The risk of not doing so can be life threatening (e.g., clot, stroke).
The good news is that if you do get a confirmed diagnosis of ET, it can be easily manageable. Many people live for years/decades with few or no symptoms. Best of luck to you. Hugs
-
Like -
Helpful -
Hug
7 ReactionsFor 10 yrs my platelets ranged 950-1200. I was diagnosed with ET at age 41 back in 2013. I rarely ever get sick, maybe once every 3 yrs. I stated taking Hydroxyurea a year ago and it has cut them to 400-750 range. I think the anxiety we all get will cause more side affects than the ET.
-
Like -
Helpful -
Hug
5 Reactions