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Kind of worried with last Blood Count

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6 years 10 months ago #65408 by lurpelis
Kind of worried with last Blood Count was created by lurpelis
I've been on Promacta since August (currently on 25mg). My last two CBCs have been weird and I'm a little worried. I just had one yesterday with the following results;

Platelets; 32,000
WBC: 1.5 K/Cumm (low)
RBC: 5.98 M/Cumm (slightly high)
Neutrophils: 0.4 M/Cumm (very low)
Lymphocytes: 0.5 M/Cumm (low)

No idea what to think, but I'm now convinced I've got cancer...
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6 years 10 months ago #65412 by poseymint
Replied by poseymint on topic Kind of worried with last Blood Count
Do you have a good hematologist who will follow up and answer your questions very soon? I would call to get an appt. Looks like many things can cause low neutrophils not just cancer- * see Mayo Clinic link.
www.mayoclinic.org/symptoms/neutropenia/basics/causes/sym-20050854
But a chat with a good doctor and follow up labs would be a start. My hemo always tests LDH along with CBC CMP, I think its a test that shows if there is disease process going on- doesn't tell what the disease is but if its high, then doc would look for cancer or infection. Good luck- try not to worry, hope its nothing!
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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6 years 9 months ago #65423 by Sandi
Replied by Sandi on topic Kind of worried with last Blood Count
Unless your doctor is concerned, there probably isn't a reason to worry. I can't even tell you how many times I've had CBC's that were out of range (nearly every time). By the next CBC, it's normal again. Many things can cause an abnormal cell count....usually an infection of some sort. I've learned to stop worrying unless I get a call from my doctor. Even then, sometimes they overreact and it turns out that nothing was wrong.
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6 years 9 months ago #65464 by lurpelis
Replied by lurpelis on topic Kind of worried with last Blood Count
Hematologist ordered a TCR recombination test just to be sure it isn't lymphoma. Though they did a bone marrow biopsy when my platelets fell the first time.

Promacta dose has been upped from 25mg to 50mg. They're also giving me a four day pulse of dexamethasone just to make sure nothing too bad happens.

Slightly worried that two years ago they missed early MDS and the promacta has pushed me over into AML... But it's probably unlikely.
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6 years 9 months ago - 6 years 9 months ago #65466 by poseymint
Replied by poseymint on topic Kind of worried with last Blood Count
Hi Lurpelis,
Am I understanding correctly that you have MDS? There is a warning from the manufacturer regarding Promacta and MDS- patients who have MDS should not be on Promacta because it can make the MDS worse. Don't want to worry you even more, sorry but maybe you are aware of the warning. Not sure why your doctor is increasing the Promacta dose, are your platelets still at 32,000? That is generally a safe number, so just in my experience, to push your counts up with Dexy and double dosing Promacta seems like over-doing it. That said, I always prefer low counts to increased drug doses- and many nurses and doctors have disagreed with me over the years! Good luck, hope you find your answers. Here is a link to Novartis warning:
www.novartis.com/news/media-releases/novartis-drug-promactar-receives-fda-breakthrough-therapy-designation-first-line-use-severe-aplastic-anemia-saa
Important Safety Information for Promacta® (eltrombopag)
Promacta is not for treatment of people with a precancerous condition called myelodysplastic syndromes (MDS). If you have MDS and receive Promacta, your MDS condition may worsen and become AML.
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6 years 9 months ago #65467 by lurpelis
Replied by lurpelis on topic Kind of worried with last Blood Count
No I don't have MDS, just an irrational fear they missed it. My counts were at 7 today so they increased my dose and gave me a dexamethasone pulse to start just to be safe over Christmas.
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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6 years 9 months ago #65468 by mrsb04
Replied by mrsb04 on topic Kind of worried with last Blood Count
If they want to give you more dex I would personally refuse it with a count over 15, give the Promacta time to work, it can take a few weeks for a dose increase to have an effect. However I have to say I agree with Poseymint. If I could maintain a count above 30 without any meds believe me I would. I've just cut my Promacta down from 50mg a day to 37.5mg a day. If my count is over 50 after 6 weeks I'm going down to 25mg a day.
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6 years 9 months ago #65470 by lurpelis
Replied by lurpelis on topic Kind of worried with last Blood Count
I wouldn't have any problem maintaining at 30 (my hematologist is also fine there) but my counts were 32, and then 22 two weeks later. Now at 7. It was definitely trending down somewhat quickly. I think the dex is being added because it's Christmas and labs are closed etc. (student health) So they just want to make sure I don't have any problems for the next four or five days.
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6 years 9 months ago - 6 years 9 months ago #65472 by poseymint
Replied by poseymint on topic Kind of worried with last Blood Count
Great that you don't have MDS! Yes, I see now what your doctor is thinking with the dex and Promacta and Christmas. A couple years ago, like you I also was at 7 platelet count and my primary doc wanted to hospitalize me on Christmas eve! I explained that I was fine and that my hematologist wasn't worried at all, but she had been taught that anything below 15K was a medical emergency. Hope your experience with dexy is decent- I personally can't tolerate it but some people do okay.
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6 years 9 months ago #65478 by lurpelis
Replied by lurpelis on topic Kind of worried with last Blood Count
I've done two dex pulses before. Some side effects and they're kind of annoying, but it's only a four day pulse so it's not soo bad.