I was diagnosed with cancer.

[CallieAndToby]

Hi all I do have hyper POTS and IC and I was diagnosed with ME but I think we've found the root cause of fatigue. My platelets have been high since 2005 around when I was a teenager and got sick but not alarmingly so it was ignored. Finally my NP sends me to hematologist/oncologist. I was just at Moffitt Cancer Center after getting bone marrow biopsy (without sedation). I am Jak2 positive, essential thrombocythemia, which is a type of chronic bone marrow cancer. I was going to give up because I described my symptoms and the doctor told me: aspirin, yoga, and exercise. Walking through the lonely corridors of that place, being told to do yoga when I'm completely debilitated, and noticing I'm the youngest one (34) was and is very difficult. Good news is there are MPN specialists that focus on quality of life, I will be calling tomorrow to see if I can see one of these doctors at UT. So I haven't been on here in awhile, sorry, dealing with this stuff plus my grandfather is battling throat cancer and my mom is a nurse during this covid time. 

[Pistol]

So sorry @CallieAndToby22!!!!!!!! This is so many bad news wrapped in one post!!!! I wish you the very best and that you find competent and kind doctors who will help you with your health issues. Stay strong!!!!!!!!!!!!!! 

[Sushi]

@CallieAndToby22Thinking of you and sending love. Please keep in touch and let us know how you are. ❤️

[Guest KiminOrlando]

Wait. I have thrombocytopenia and I don't have cancer. What happened now? Oncologists like to call stuff like this cancer, but mine wasn't. They did the same to my best friend. Is there more? Is your ANA positive? Are they saying you have PV? Did they just assume cancer because of thrombocytopenia and JAK2 positive?

I am balancing on the edge, but it is because of my autoimmune/dysautonomia. 

Oncologists are used to treating cancer, so their habit is to default to cancer as a diagnosis. I know Moffiit and I know they have a good reputation.

Orlando Health literally just scared the snot out of my best friend after her bone marrow biopsy in January. After getting a second opinion and requestiong additional testing, she doesn't have cancer, but they initially told her it was leukemia. Orlando Health was willing to do more research. I went through this last year with Florida Hospital. They are paid to be extra cautious. They also did more research. I felt like I was challenging him, but after discussing my research with him, he did his homework and came back with solid answers.

If you have PV, my understanding is that there is treatment. It may be plasma pharesis (?), but I'm not sure. I'm sure a support group would be beneficial. 

Also, I think the standard of care has changed and they don't give any kind of sedation to adults for bone marrow biopsies. The last one I was scheduled for was to be done in a doctor's office which I thought to be barbaric. I managed to get out of it, for now.

I hope you end up like us. We know we are more likely to develop cancer, but don't have it yet. 

Please let me know.

[CallieAndToby]

12 hours ago, KiminOrlando said:

Wait. I have thrombocytopenia and I don't have cancer. What happened now? Oncologists like to call stuff like this cancer, but mine wasn't. They did the same to my best friend. Is there more? Is your ANA positive? Are they saying you have PV? Did they just assume cancer because of thrombocytopenia and JAK2 positive?

I am balancing on the edge, but it is because of my autoimmune/dysautonomia. 

Oncologists are used to treating cancer, so their habit is to default to cancer as a diagnosis. I know Moffiit and I know they have a good reputation.

Orlando Health literally just scared the snot out of my best friend after her bone marrow biopsy in January. After getting a second opinion and requestiong additional testing, she doesn't have cancer, but they initially told her it was leukemia. Orlando Health was willing to do more research. I went through this last year with Florida Hospital. They are paid to be extra cautious. They also did more research. I felt like I was challenging him, but after discussing my research with him, he did his homework and came back with solid answers.

If you have PV, my understanding is that there is treatment. It may be plasma pharesis (?), but I'm not sure. I'm sure a support group would be beneficial. 

Also, I think the standard of care has changed and they don't give any kind of sedation to adults for bone marrow biopsies. The last one I was scheduled for was to be done in a doctor's office which I thought to be barbaric. I managed to get out of it, for now.

I hope you end up like us. We know we are more likely to develop cancer, but don't have it yet. 

Please let me know.

What I have is considered an MPN. Which are bone marrow cancers or also called blood cancers all chronic. I have essential thrombocythemia, my platelets are too high, they're clustered, they're big, my marrow is making too much of all the rbc and wbc and plt. So you can research MPN if you want but I have no heard of what you typed out. And yes 3 times jak2 positive. I've decided to go see a special doctor in texas who actually cares about patients' quality of life, who specializes in mpn's. This cancer makes me very sick, very debilitated, I don't have pv or mf so they say "your platelets aren't high enough for hu" but dear god do something. 

[Guest KiminOrlando]

@CallieAndToby22

That's good. I'm glad you are going for another opinion. It sounds like you have done your research and the place in Texas is going to be able to get to the bottom of it. Sometimes you have to push back. I can't believe they dropped the diagnosis of cancer on you then said do yoga. That must be doctor speak for, "We don't really know what to do." If you don't mind, please update us on how you are doing. I think that the autonomic nervous system is involved in bone marrow. I don't know if it would pertain to this.

I hope they find that it is just something out of balance or a temporary result from a medication and it is reversible.  I pray the doctors at Moffit were mistaken. 

[CallieAndToby]

On 4/27/2020 at 12:51 PM, KiminOrlando said:

@CallieAndToby22

That's good. I'm glad you are going for another opinion. It sounds like you have done your research and the place in Texas is going to be able to get to the bottom of it. Sometimes you have to push back. I can't believe they dropped the diagnosis of cancer on you then said do yoga. That must be doctor speak for, "We don't really know what to do." If you don't mind, please update us on how you are doing. I think that the autonomic nervous system is involved in bone marrow. I don't know if it would pertain to this.

I hope they find that it is just something out of balance or a temporary result from a medication and it is reversible.  I pray the doctors at Moffit were mistaken. 

Hello all. I have not been doing well. I'm on way too many medications and I just rested for 3 hours unable to nap, and I feel like a complete sedated zombie. I'm hoping to also find someone at San Antonio UT who can help with my medications, I need to start all over. I have an appointment with Dr. Scherber next week! I will have to mention the hyper POTS diagnosis. 

[Guest KiminOrlando]

Sorry you are still having so much trouble. Do you think you are worse because of the meds or the illness or can't tell? If you think it is the meds, maybe see if you can get a Pharmacologist consult. Mixing all these compounds does strange things. 

Are you in Texas now or just looking for a consult somewhere?