Platelets down
During my final hospitalization, my platelets went down to 14,000 at the lowest point while my WBC was 0.2 in spite of daily Neupogen. I received 2 units of whole blood and 2 of platelets. Although my platelets never returned to the normal range (150,000-450,000), they did rise significantly into the 133,000 range, like in my last CBC done on October 1st.
Today, I went to the Infusion Center to get a medi-port flush. The CBC returned a 35,000 platelet count. It was repeated again with the same results. They then took venous blood to test in case there was some problem with the port blood. It was still the same. They gave me an appointment to return in a week and told me to watch out for heavy bleeding. (I know from last time that 35,000 isn't low enough to worry about a transfusion, thank goodness.)
The IC spoke with the oncologist. She said that I should come in for repeat testing by Monday at the latest. I've had no sign of bleeding and I swear to you that I haven't been sneaking 5-FU recreationally!!! Aside from the anal pain from fissures and lower pelvic aches and backaches, I feel pretty good. I still tire, but nowhere nearly as bad as I did in the first two months post-treatment.
Is this platelet drop unusual or is it fairly common? I have to admit that I'm way creeped out! On the positive side, I guess this means that nobody will want to do a colposcopy & biopsy on me in the near future. Whew!
Thank you.
Comments
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Ouch
Some of my blood counts took years to come back in the normal range. However, I can't recall if my platelet count was one that remained low for an extended period of time. I really can't answer your question, but I will say that it's probably not unusual, as this treatment does a real number on us. My med onc never got concerned about my low counts, but my internist was all ready to refer me to a hematologist once when I had a very low WBC. I immediately called my med oncs office and they had me come in for blood work, which was all within or close to normal range.
At this point, I would not panic until you have the blood work repeated. In the meantime, just don't put yourself at risk for a cut. I'm particularly thinking about leg-shaving--I'm terrible at that and always seem to nick myself!
Martha
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Hi Ouch
Hi - There's a very, very rare side effect of the mitomycin C that results in damaged platelets. It can lead to very low platelet counts. It's very rare, and I don't want to creep you out any more than you already are, that's for sure. But it bears watching. The side effect is called TTP and what happens is that the platelets coagulate and shear off red blood cells. It's a very dangerous condition if left untreated, but is very treatable with daily plasmaphoresis treatments. (I ended up getting it, that's how I know about it - mine was undetected for a while which made it more serious than if it had been detected early.) TTP can present itself months after treatment has ended. Mine was detected four months after treatment ended.
It's really good that your doctors are watching you so closely. Again, TTP from mitomycin is very rare - so please don't dwell on it. Just keep it in mind and maybe ask the doctors about it. They can visually examine your blood under a microscope to look for signs of sheared red blood cells.
Edit: Keep an eye out for little red spots appearing under your skin. Mine showed on the back of my hands, but arms and legs are other areas to look at. It's call petechiae and is a result of bleeding under the skin. It can look like a rash.
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Thank you.RoseC said:Hi Ouch
Hi - There's a very, very rare side effect of the mitomycin C that results in damaged platelets. It can lead to very low platelet counts. It's very rare, and I don't want to creep you out any more than you already are, that's for sure. But it bears watching. The side effect is called TTP and what happens is that the platelets coagulate and shear off red blood cells. It's a very dangerous condition if left untreated, but is very treatable with daily plasmaphoresis treatments. (I ended up getting it, that's how I know about it - mine was undetected for a while which made it more serious than if it had been detected early.) TTP can present itself months after treatment has ended. Mine was detected four months after treatment ended.
It's really good that your doctors are watching you so closely. Again, TTP from mitomycin is very rare - so please don't dwell on it. Just keep it in mind and maybe ask the doctors about it. They can visually examine your blood under a microscope to look for signs of sheared red blood cells.
Edit: Keep an eye out for little red spots appearing under your skin. Mine showed on the back of my hands, but arms and legs are other areas to look at. It's call petechiae and is a result of bleeding under the skin. It can look like a rash.
I only have a few bruises on my legs that appear to be from normal bumps. No big purple bruises or petechiae. The oncologist called tonight to say that she wasn't sure why this is happening. She prescribed 50 mg of prednisone x 5 days with a repeat CBC on day 6 to see if this is an autoimmune condition (if the count goes up with the Pred, it's autoimmune). I've already had an autoimmune disorder which is what rheumatic fever is. I think that it's not uncommon for people with autoimmunities to have more than one such condition.
The oncologist also bills herself as a hematologist. I'll ask about the TTP for sure. I'm at about the 4th month post-Mitomycin. After reading about it, congratulations on still being here!
Just when I approach the finish line, it gets moved back. One good thing (to me, anyway) is that with the low platelets, I won't have to worry about that colposcopy and biopsy for a while! .^_^.
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Ahhhh....CHOO!RoseC said:Hi Ouch
Hi - There's a very, very rare side effect of the mitomycin C that results in damaged platelets. It can lead to very low platelet counts. It's very rare, and I don't want to creep you out any more than you already are, that's for sure. But it bears watching. The side effect is called TTP and what happens is that the platelets coagulate and shear off red blood cells. It's a very dangerous condition if left untreated, but is very treatable with daily plasmaphoresis treatments. (I ended up getting it, that's how I know about it - mine was undetected for a while which made it more serious than if it had been detected early.) TTP can present itself months after treatment has ended. Mine was detected four months after treatment ended.
It's really good that your doctors are watching you so closely. Again, TTP from mitomycin is very rare - so please don't dwell on it. Just keep it in mind and maybe ask the doctors about it. They can visually examine your blood under a microscope to look for signs of sheared red blood cells.
Edit: Keep an eye out for little red spots appearing under your skin. Mine showed on the back of my hands, but arms and legs are other areas to look at. It's call petechiae and is a result of bleeding under the skin. It can look like a rash.
I read the mitomycin article that the Infusion Center gave me more thoroughly than I ever have before. http://www.chemocare.com/chemotherapy/drug-info/Mitomycin.aspx#.VF1v0hZGUek Although it doesn't mention TTP (Thrombotic Thrombocytopenia Purpura), it does mention the Hemolytic Uremic Syndrome (HUS) component. "TTP-HUS: Information about TTP-HUS for Patients, Their Families and Friends from: The Oklahoma Blood Institute and the University of Oklahoma" http://www.ouhsc.edu/platelets/TTP/what is ttp.html
The article said that mitomycin is created from a species of soil fungus called Streptomyces. I had a big fat jolt - I am allergic to several species of soil fungus! About 8 years ago, I was tested because when I stayed at my friend's antique Cape Cod cottage during the autumn, I kept getting a runny nose that evolved into bronchitis. (The "cahtage" has no foundation, but was built on-grade, so it can be damp underneath.) I stopped going in the autumn and the bronchitis episodes dwindled. I forgot all about the fungus allergies and even the names of the species. I've requested their names from the allergist, but since my records are archived off at some service they subscribe to, they could take some time to get.
Jimney Crickets! Who would have thought that such information could be of value to cancer treatment?
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PAP smear result.Ouch_Ouch_Ouch said:Thank you.
I only have a few bruises on my legs that appear to be from normal bumps. No big purple bruises or petechiae. The oncologist called tonight to say that she wasn't sure why this is happening. She prescribed 50 mg of prednisone x 5 days with a repeat CBC on day 6 to see if this is an autoimmune condition (if the count goes up with the Pred, it's autoimmune). I've already had an autoimmune disorder which is what rheumatic fever is. I think that it's not uncommon for people with autoimmunities to have more than one such condition.
The oncologist also bills herself as a hematologist. I'll ask about the TTP for sure. I'm at about the 4th month post-Mitomycin. After reading about it, congratulations on still being here!
Just when I approach the finish line, it gets moved back. One good thing (to me, anyway) is that with the low platelets, I won't have to worry about that colposcopy and biopsy for a while! .^_^.
I got the PAP smear result ---
"Diagnosis: Atypical squamus cells; cannot exclude a high grade squamus intraepithelial lesion (ASC-H). [= HSIL]
STI Molecular Profile: HPV-16, HPV-18 Not Detected; HPV High Risk Non-16/18 Not Detected.
Adequacy: Satisfactory for evaluation [. . .other stuff. . .] Partially obscuring inflammation."
Not so bad after all, eh?
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OuchOuch_Ouch_Ouch said:PAP smear result.
I got the PAP smear result ---
"Diagnosis: Atypical squamus cells; cannot exclude a high grade squamus intraepithelial lesion (ASC-H). [= HSIL]
STI Molecular Profile: HPV-16, HPV-18 Not Detected; HPV High Risk Non-16/18 Not Detected.
Adequacy: Satisfactory for evaluation [. . .other stuff. . .] Partially obscuring inflammation."
Not so bad after all, eh?
Is your doctor going to repeat your pap in 6 months? I've had similar results with mine in the past and they've always had me come back in 6 months for another smear.
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That's so interesting Ouch.Ouch_Ouch_Ouch said:Ahhhh....CHOO!
I read the mitomycin article that the Infusion Center gave me more thoroughly than I ever have before. http://www.chemocare.com/chemotherapy/drug-info/Mitomycin.aspx#.VF1v0hZGUek Although it doesn't mention TTP (Thrombotic Thrombocytopenia Purpura), it does mention the Hemolytic Uremic Syndrome (HUS) component. "TTP-HUS: Information about TTP-HUS for Patients, Their Families and Friends from: The Oklahoma Blood Institute and the University of Oklahoma" http://www.ouhsc.edu/platelets/TTP/what is ttp.html
The article said that mitomycin is created from a species of soil fungus called Streptomyces. I had a big fat jolt - I am allergic to several species of soil fungus! About 8 years ago, I was tested because when I stayed at my friend's antique Cape Cod cottage during the autumn, I kept getting a runny nose that evolved into bronchitis. (The "cahtage" has no foundation, but was built on-grade, so it can be damp underneath.) I stopped going in the autumn and the bronchitis episodes dwindled. I forgot all about the fungus allergies and even the names of the species. I've requested their names from the allergist, but since my records are archived off at some service they subscribe to, they could take some time to get.
Jimney Crickets! Who would have thought that such information could be of value to cancer treatment?
That's so interesting Ouch. Who would have guessed?
The University of Oklahoma is a leader in TTP research. During my illness my family contacted Dr James George at the university for guidance. He was great. Should you need it (and I hope you don't), I was treated at Lahey Clinic in Burlington MA. Dr Keith Stuart (oncology/hematology) and Dr Simon Mantha (hematology - he's since left and is working in NYC) - they were great. I mention this because you said you stay at Cape Cod sometimes, and I thought Lahey might be an option for you if you're from this area. Mass General is also very knowledgable. Hopefully you won't need them though, and this is something that will resolve itself easily.
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No.mp327 said:Ouch
Is your doctor going to repeat your pap in 6 months? I've had similar results with mine in the past and they've always had me come back in 6 months for another smear.
According to the gyn-from-heck, I'm supposed to get a colposcopy w/biopsy. From the UCSF Dsyplasia Center, an anal HSIL condition would be treated, I believe, as it's also known as "cancinoma in situ". I would assume that the same would apply to cervical HSIL (if it turns out to be so). My primary thinks that the obscuring inflammation may be due to the radiation, but definitely wants me biopsied to see. I want to see a different gyn, though, one who has some experience in pelvic radiation and more pain empathy.
I was relieved that the PAP didn't outright say that there was an angry cancer.
However, until the platelet drop is figured out, probably nobody will want to biopsy me. And I certainly don't want to stay on 50mg of daily Prednisone beyond the oncologist's little "test". I went through a lot to lose this 20lb weight - I don't want to gain it back because of Prednisone!!!
I have to admit that both things, the pending colposcopy w/biopsy and the platelet-plunge, are making me nervous! The anal cancer is supposedly gone, but the somber beat goes on, needles, scalpels and all.
>_<
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Thank you.RoseC said:Hi Ouch
Hi - There's a very, very rare side effect of the mitomycin C that results in damaged platelets. It can lead to very low platelet counts. It's very rare, and I don't want to creep you out any more than you already are, that's for sure. But it bears watching. The side effect is called TTP and what happens is that the platelets coagulate and shear off red blood cells. It's a very dangerous condition if left untreated, but is very treatable with daily plasmaphoresis treatments. (I ended up getting it, that's how I know about it - mine was undetected for a while which made it more serious than if it had been detected early.) TTP can present itself months after treatment has ended. Mine was detected four months after treatment ended.
It's really good that your doctors are watching you so closely. Again, TTP from mitomycin is very rare - so please don't dwell on it. Just keep it in mind and maybe ask the doctors about it. They can visually examine your blood under a microscope to look for signs of sheared red blood cells.
Edit: Keep an eye out for little red spots appearing under your skin. Mine showed on the back of my hands, but arms and legs are other areas to look at. It's call petechiae and is a result of bleeding under the skin. It can look like a rash.
Thank you for letting me know about TTP. The oncologist is checking me to see if I have "an autoimmune condition" and TTP is one. So, not so far-fetched.
I have only a couple of brusies on my legs, apparently from bumps. I have one small purple bruise on my arm from the site of that last tell-tale CBC when I discovered my platelets had dropped. The woman at the Infusion Center who does the peripheral blood draws is EXCELLENT with a light, deft, artistic touch and this is the first time I was left marked by her. I have no petechiae. No obvious blood in my uriine. No headaches or diarrhea. No slurred speech or confusion (beyond the usual!)
Aside from radiation-induced pelvic and anal pain, I don't feel ill. My platelets are 35,000. That's not critically low. Not transfusuion low, either. If I have a serious condition, it seems early on in it.
Sadly, I live much closer to NYC than to Cape Cod. I really have no idea where in the Hudson Valley I could get plasmaphoresis if needed. The only time I even saw one done was at New York-Presbyterian Medical Center in Manhattan when I was floated to the research unit. (I worked there when it was still Columbia-Presbyterian Medical Center.)
I just want everything to be done in time to prepare for my next exquisitely painful sigmoidoscope. I just see a long line of people stretching out ahead of me, all armed with baseball bats and scalpels!
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OuchOuch_Ouch_Ouch said:No.
According to the gyn-from-heck, I'm supposed to get a colposcopy w/biopsy. From the UCSF Dsyplasia Center, an anal HSIL condition would be treated, I believe, as it's also known as "cancinoma in situ". I would assume that the same would apply to cervical HSIL (if it turns out to be so). My primary thinks that the obscuring inflammation may be due to the radiation, but definitely wants me biopsied to see. I want to see a different gyn, though, one who has some experience in pelvic radiation and more pain empathy.
I was relieved that the PAP didn't outright say that there was an angry cancer.
However, until the platelet drop is figured out, probably nobody will want to biopsy me. And I certainly don't want to stay on 50mg of daily Prednisone beyond the oncologist's little "test". I went through a lot to lose this 20lb weight - I don't want to gain it back because of Prednisone!!!
I have to admit that both things, the pending colposcopy w/biopsy and the platelet-plunge, are making me nervous! The anal cancer is supposedly gone, but the somber beat goes on, needles, scalpels and all.
>_<
Since you live near NYC, perhaps you can find an an oncology gynecologist--there is such a specialty. I would think someone with that specialty would be able to better sort this out than a regular gyno.
I do not know if this is true or not, but I have heard that many women have abnormal paps after pelvic radiation. Upon further testing, they come back normal.
Radiation--the gift that keeps on giving!
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Yes!mp327 said:Ouch
Since you live near NYC, perhaps you can find an an oncology gynecologist--there is such a specialty. I would think someone with that specialty would be able to better sort this out than a regular gyno.
I do not know if this is true or not, but I have heard that many women have abnormal paps after pelvic radiation. Upon further testing, they come back normal.
Radiation--the gift that keeps on giving!
"Radiation--the gift that keeps on giving!"
Well, at least for the time being, like a firefly, I don't need to buy a nightlight!
.^_^.
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I saw the colo-rectal guyOuch_Ouch_Ouch said:Thank you.
Thank you for letting me know about TTP. The oncologist is checking me to see if I have "an autoimmune condition" and TTP is one. So, not so far-fetched.
I have only a couple of brusies on my legs, apparently from bumps. I have one small purple bruise on my arm from the site of that last tell-tale CBC when I discovered my platelets had dropped. The woman at the Infusion Center who does the peripheral blood draws is EXCELLENT with a light, deft, artistic touch and this is the first time I was left marked by her. I have no petechiae. No obvious blood in my uriine. No headaches or diarrhea. No slurred speech or confusion (beyond the usual!)
Aside from radiation-induced pelvic and anal pain, I don't feel ill. My platelets are 35,000. That's not critically low. Not transfusuion low, either. If I have a serious condition, it seems early on in it.
Sadly, I live much closer to NYC than to Cape Cod. I really have no idea where in the Hudson Valley I could get plasmaphoresis if needed. The only time I even saw one done was at New York-Presbyterian Medical Center in Manhattan when I was floated to the research unit. (I worked there when it was still Columbia-Presbyterian Medical Center.)
I just want everything to be done in time to prepare for my next exquisitely painful sigmoidoscope. I just see a long line of people stretching out ahead of me, all armed with baseball bats and scalpels!
RoseC - I saw the colo-rectal guy today and when I told him about the reduced platelets, the first thing he said was that maybe it was one of the thrombocytopenia purpuras. [Sarcasm ahead:] Great! A consensus is building >_<
As soon as I started taking the 5 day run of Prednisone, unlike my platelets, my B/P shot up. One more day, one more day....
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Ouch, they're watching youOuch_Ouch_Ouch said:I saw the colo-rectal guy
RoseC - I saw the colo-rectal guy today and when I told him about the reduced platelets, the first thing he said was that maybe it was one of the thrombocytopenia purpuras. [Sarcasm ahead:] Great! A consensus is building >_<
As soon as I started taking the 5 day run of Prednisone, unlike my platelets, my B/P shot up. One more day, one more day....
Ouch, they're watching you closely - IF it's TTP (and it's not proven to be that yet), it'll be caught early. If you need a doctor in New York, the doctor who diagnosed me, Dr Simon Mantha, practices at Sloan Kettering in New York City. TTP is so rare that a lot of places don't know how to treat it properly. Dr Mantha does - he's very good. Some info about him is on the attached link. It's a ways away from where you are, but if it does turn out to be TTP, you're much better off seeing someone who's familiar with it.
Please keep us informed. If I can help at all, please let me know.
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Seeing how young this doctorRoseC said:Ouch, they're watching you
Ouch, they're watching you closely - IF it's TTP (and it's not proven to be that yet), it'll be caught early. If you need a doctor in New York, the doctor who diagnosed me, Dr Simon Mantha, practices at Sloan Kettering in New York City. TTP is so rare that a lot of places don't know how to treat it properly. Dr Mantha does - he's very good. Some info about him is on the attached link. It's a ways away from where you are, but if it does turn out to be TTP, you're much better off seeing someone who's familiar with it.
Please keep us informed. If I can help at all, please let me know.
Seeing how young this doctor looks makes me feel so olderly! If it comes down to needing it, my insurance company has a process for out-of-network specialist care, but is able to deny the claim at any point along the way, of course.
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OuchOuch_Ouch_Ouch said:Yes!
"Radiation--the gift that keeps on giving!"
Well, at least for the time being, like a firefly, I don't need to buy a nightlight!
.^_^.
LOL! And if the light goes out in your refrigerator, no problem!
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You must be psychic!mp327 said:Ouch
Since you live near NYC, perhaps you can find an an oncology gynecologist--there is such a specialty. I would think someone with that specialty would be able to better sort this out than a regular gyno.
I do not know if this is true or not, but I have heard that many women have abnormal paps after pelvic radiation. Upon further testing, they come back normal.
Radiation--the gift that keeps on giving!
My primary MD was at a loss of who to refer me to, gynecology-wise.
The onclogist gave me the names of two gyns, neither of whom take my insurance.
But then I asked my radiation oncologist and he told me the name of a specific gynecological oncology group that he "loves, loves, loves!" AND they take my insurance. When I asked if gynecological oncologists were over-kill at this time, he said absolutely not. And he made me promise to call his cell 'phone as soon as I get the next CBC result on Wednesday, "so that I don't have to go through this alone". I love that guy! So, when the platelet thing is resolved, I'll be ready to be chopped into further little biopsy-sized pieces.
It's probably just radiation inflammation, though.
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OuchOuch_Ouch_Ouch said:You must be psychic!
My primary MD was at a loss of who to refer me to, gynecology-wise.
The onclogist gave me the names of two gyns, neither of whom take my insurance.
But then I asked my radiation oncologist and he told me the name of a specific gynecological oncology group that he "loves, loves, loves!" AND they take my insurance. When I asked if gynecological oncologists were over-kill at this time, he said absolutely not. And he made me promise to call his cell 'phone as soon as I get the next CBC result on Wednesday, "so that I don't have to go through this alone". I love that guy! So, when the platelet thing is resolved, I'll be ready to be chopped into further little biopsy-sized pieces.
It's probably just radiation inflammation, though.
I'm glad you found a specialist who will take your insurance and one that is highly recommended by your rad onc. I think radiation does so many evil things to us, long after it has zapped away our cancer cells. It seems to me that a regular (for lack of a better word) gyno is probably not up on all of those side effects. I hope all of your issues turn out to be insignificant and getting to that end result will not require too much chopping! Keep us posted!
Martha
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OuchOuch_Ouch_Ouch said:You must be psychic!
My primary MD was at a loss of who to refer me to, gynecology-wise.
The onclogist gave me the names of two gyns, neither of whom take my insurance.
But then I asked my radiation oncologist and he told me the name of a specific gynecological oncology group that he "loves, loves, loves!" AND they take my insurance. When I asked if gynecological oncologists were over-kill at this time, he said absolutely not. And he made me promise to call his cell 'phone as soon as I get the next CBC result on Wednesday, "so that I don't have to go through this alone". I love that guy! So, when the platelet thing is resolved, I'll be ready to be chopped into further little biopsy-sized pieces.
It's probably just radiation inflammation, though.
I saw a gyno oncologist as my docs were staging my treatment. There was a concern about the tumor going through the vaginal wall. I saw him once. He gave me the most thorough pelvic exam ever. It seemed like it went on for an eternity. And then we had a very long talk about what he'd be telling the other doctors and he drew pictures and answered all our questions. It was very reassuring to have that specialist's opinion. I saw him once about a year after treatment ended. Another deep exam. We talked and then he said I didn't need to see him again.
So I'd say definitely go to the group that your other doc loves. I think getting that perspective is going to be really important.
Janet
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Thank you!jcruz said:Ouch
I saw a gyno oncologist as my docs were staging my treatment. There was a concern about the tumor going through the vaginal wall. I saw him once. He gave me the most thorough pelvic exam ever. It seemed like it went on for an eternity. And then we had a very long talk about what he'd be telling the other doctors and he drew pictures and answered all our questions. It was very reassuring to have that specialist's opinion. I saw him once about a year after treatment ended. Another deep exam. We talked and then he said I didn't need to see him again.
So I'd say definitely go to the group that your other doc loves. I think getting that perspective is going to be really important.
Janet
Before the gynecological oncologist group will give a new person an appointment, they want to look at the medical records first. I have asked the painful gyn to send the PAP result and a referral to the oncology group. The radiation oncologist is sending info on my radiation exposure. I have a batch of scans and biopsies I am sending and I think they also want CDs of the scans. I don't know what their criteria for granting an appointment is, though - I would hate to feel the sting of rejection!
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CBC today.RoseC said:Ouch, they're watching you
Ouch, they're watching you closely - IF it's TTP (and it's not proven to be that yet), it'll be caught early. If you need a doctor in New York, the doctor who diagnosed me, Dr Simon Mantha, practices at Sloan Kettering in New York City. TTP is so rare that a lot of places don't know how to treat it properly. Dr Mantha does - he's very good. Some info about him is on the attached link. It's a ways away from where you are, but if it does turn out to be TTP, you're much better off seeing someone who's familiar with it.
Please keep us informed. If I can help at all, please let me know.
My platelets today are 74,000, much improved after the 5 days of Prednisone 50mg, though it made my B/P shoot up.
The oncologist doesn't think I have TTP, as she said I wouldn't be able to walk if I did because I'd be too sick. She thinks it's ITP (Immune Thrombocytopenia Purpura). She also said that she thinks it's from the Zantac I was put on for epigastric pain, but I realized on my way home that that would mean it's DITP (Drug-induced Thrombocytopenia Purpura). And just a week and a half ago, I only knew about one kind of thrombocytopenia!
She doesn't think I need a bone marrow aspiration yet (THANK GOODNESS!!!). But I could kick myself for forgetting to ask for a blood smear.
Plan:
Stop Zantac.
Continue on Prednisone (40mg x 1 week, then 30mg x 1 week, then 20mg x 1 week, then "we'll see").
Weekly CBCs for the next month or so.
Call ASAP if I bruise or bleed.
Also, I'm sending myself to the allergist on Friday to be re-tested for soil fungi to see if I have a sensitivity to mitomycin's fungi source.
I freely admit to confusion and trepidation.
0
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