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Zero Neutrophils = 4 Days in the Hospital Zero Neutrophils = 4 Days in the Hospital

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  #1  
Unread 07-05-2003, 04:21 PM
Zero Neutrophils = 4 Days in the Hospital

Apparently, when I got my blood drawn this past Monday, I had zero neutrophils and a white count of 1.2. So my nurse called to tell me to be careful, wash my hands, not go out, etc. -- all of which I did. Alas, I came down with a fever late Tuesday -- 99.9, then 100.5, then 101. You're supposed to go to the hospital if your fever hits 100.4, so I called, and they made me come in.

I thus spent the last few days in a private room (got home today), bored out of my skull, since I pretty much feel fine and television is mind-numbingly dumb during the day (and often in the evenings, too). My sister came to visit, and I was like, "Wait! I have to see which of those guys is the real father of that girl's baby!" I can only blame myself, since the new Harry Potter was sitting nearby . . . .

Despite starting Neupogen shots Monday, my WBC from Monday through this morning (skipping Tuesday, whose printout I don't have) was 1.2, 1.0, 1.4, 3.0, 9.4. My neutrophils were 0, 2.8, 3.2, 6, 0 and 60. My doctor thinks the second "0" reading might have been a mistake. I did, too, and asked them to redo the test yesterday, but they wouldn't. And my doctor was out, since it was on the 4th.

It turns out I will have 6 Carboplatin/Taxol treatments rather than 8. My counts will not hold up for four more treatments, and the doctor would rather do 6. He said the average Carboplatin dose is 650 mgs., and my first three doses were 1000 mgs. Which probably accounts for the toll it's taken on my "sensitive bone marrow," as one doctor called it. (Another mentioned he'd never seen neutrophils of "zero.")

Once we get through the treatment, we'll talk about whether to do consolidation therapy, have me participate in the OvaRex trial (I'm eligible, but it's being done at another hospital), and/or do CA125 monitoring or a second-look surgery.

The head of gyn/onc at the hospital doing the trial was told about my case, and suggests that because of my age, I have a second-look surgery and be treated until there is no evidence of disease. . . since 1/3 of the participants in the OvaRex trial get a placebo. This might be tricky, I suppose, if something is found (and I'm hoping that there won't be anything) . . . since my counts aren't tolerating the chemo. But we'll figure it out. And we'll be doing Neupogen starting the day after chemo from here forward.

s to everyone!
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  #2  
Unread 07-05-2003, 05:03 PM
WOW!

I've never heard of ZERO neutrophils either--and that is a whopping amount of carboplatin--no wonder! Carboplatin hits the bone marrow very hard. I started at 698 this time and had to go at 598 as 698 was killing me. Sorry you wound up in the hospital but in a situation like that, it's the best place for you really. I know about TV--my "favorites" are the paternity cases and wild teenagers. Six treatments are the standard--you aren't being shortchanged there. And with your next one--you'll be halfway done. I wish this hadn't happened to you but your Dr. sounds very thorough and on top of things. Keep on keeping on--you'll make it through and then be on your way to a cancer-free future! Ellen
  #3  
Unread 07-05-2003, 06:05 PM
Zero Neutrophils = 4 Days in the Hospital

s SirenSong

Yikes to that zero!!!! I am glad to know you are rebounding at this point.
I guess you were isolated in the hospital with neutropenic precautions. Did the staff protect you from them by wearing masks and gloves when they entered your room?
Second look surgery????? Not many cancer centers are still doing this.
Many docs have decided that recurrences still occur even with a clean second look. It sounds like in your case they would do this to decide whether to do consolidation or not? But if something were found, would not a proven treatment be started? Could they do this laproscopically or would it be your third laporotomy within a year?
I believe Sloan Kettering in NYC still does some second looking.
I am seriously considering contacting NCI about the vaccine. I thought the Univ of PA was going to offering it in a phase III trial by this time. But I have heard nothing.
Keeping making those pesty neutrophils.

karenann
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  #4  
Unread 07-05-2003, 08:13 PM
Zero Neutrophils = 4 Days in the Hospital

(Links to three trials discussed herein are at the end, just in case anyone's interested.)

Ellen & Karenann --

You guys are the best! I always love hearing from you.

Ellen --

I'm 5'9" and weigh about 150, so that may have something to do with the whoppingness of the dose. Simply, I'm taller than the average patient. My doctor says he also gives higher doses for younger women. For my 4th treatment, he lowered it to 750 mgs. He said he won't lower the dose again, so my next two treatments will be 750 mgs. The first 3 were 1000 mgs. each.

I'm actually glad that he blasted me as hard as he did. The doctor says that the first three doses are arguably the most important. Since I'm now doing 6 treatments, I'm actually 2/3rds of the way done. My 5th treatment should be on July 14th . . . and my sixth on August 4th. It is such a big relief, actually. I didn't know how I was going to make it through 8 treatments . . . but I would've forced myself if there was to be any benefit found. As it is, they haven't found any real benefit to those extra two treatments, and . . . obviously, my body is kind of struggling, so I don't want to do any long-term damage. My heart is already racing quite a bit. I'm hoping that fun side effect will reverse itself.

Yep, those paternity cases were great! As was *anything* on Judge Judy, because she just gets the world's dumbest people on that show and then berates them to death. It was my only entertainment! Thanks for the encouragement about not worrying about the reduced dose or just doing 6 treatments. It helps hearing positive words from people who have been there.

Karenann --

I was the neutropenic precaution queen of the hospital! The sad thing is, I didn't know my neutrophils were at zero until I arrived at the hospital and they looked it up. My nurse had told me my WBC number on the phone, and said something about 100 percent lymphocytes, but she didn't mention neutrophils . . . and my mom said, "That can't be right." I didn't understand how the percentage math worked at that time. (I do now, though.)

There were purple gloves and masks outside my room, so anyone who visited me -- whether friend, nurse or doctor -- came in looking like a surgeon. It was quite amusing. My doctor walked in today without a mask and said, "Notice I'm not wearing a mask?" I had already pestered someone else into giving me this morning's blood results, though, and had already packed my things by the time the doctor got there.

As far as I can tell, my own hospital does not do second look surgeries as a matter of practice. My chemo doctor and I have not yet sat down with my surgeon to discuss what we should do going forward (if anything). The second look was suggested by the head of the department at another leading hospital, which I'd contacted regarding the OvaRex trial. A friend of mine who recently transferred there asked what would be best for me given my age and situation, and that was the answer that came back from the department head. As far as I can tell, second looks are generally laparoscopic. Two surgeries is already two more than I'd planned on, so I'm not sure I'm up for any kind of invasive procedure, scopic or not.

I've found a lot of information about the P53 vaccine trial, but no one at my hospital seems to know much about it. One of my surgeons attended the recent Western Gynecologic Oncology Conference, and she said it was not really discussed. OvaRex, however, was. She said that the research presented indicated that OvaRex may double remissions periods. But when I mentioned the "it messes up your CA125" issue, she wasn't aware of it. So I have more research yet to do on that one. (As you know, I just make myself crazy trying to figure out what the best possible thing to do might be.)

One other trial of interest is for people with chemo-resistant ovarian cancer (that's not me). This study, involving phenoxodiol, was brought to my attention by the California Ovarian Cancer Coalition. (Link at end.)

The best course of action for me might just be to watch my CA125. I honestly believe that the chemo is the first course of treatment. For me, Phase II will consist of trying to adopt a partially raw diet, minimizing sugars and dairy, juicing vegetables and fruits, eating whole foods rather than processed foods, expanding my supplement and vitamin program, and adopting some sort of Qigong / Tai Chi / Yoga exercise program. There are far too many incidences of people healing themselves in this manner, so I'd be foolish to not at least try. I also quit drinking wine (long a love of mine), which can't hurt either. Chemo is just Phase I. I know there's more that I can do.

For those who are interested:

Link to info about OvaRex trial:
http://www.clinicaltrials.gov/ct/gui...50375?order=31

Link to info about P53 vaccine trial:
http://www.clinicaltrials.gov/ct/gui...01827?order=10

Link to info about phenoxodiol trail at Yale:
http://www.info.med.yale.edu/obgyn/r...enoxodiol.html
  #5  
Unread 07-05-2003, 08:58 PM
Zero Neutrophils = 4 Days in the Hospital

Hi Dina Sirensong...

Glad to hear that you are back on the mend... I was actually wondering where you have been!!

I also was told. by my gynocologist/oncologist that second look surgerys are not really done anymore. And Karenanne, I am sure if Sloan Kettering does it anymore either. The hospital I go to is North Shore University Hospital in Manhassett, NY and my oncologist was trained at Sloane Kettering. She also does not believe in second look surgerys.

However,Sirenson, she is very interested in Ovarex. She told me months ago that she was studying the trial group very carefully and was impressed with the results. In fact she asked me if I would be interested in taking it once the trial is over.
I am actually very lucky to have an oncologist that specializes in ovarian cancer.

Keep in touch.

Rosalie
  #6  
Unread 07-05-2003, 09:26 PM
Zero Neutrophils = 4 Days in the Hospital

Hi again SirenSong

The phenoxodiol trial is phase II and is going on at Yale. They are now closed, having gotten their 40 participants. This drug certainly looks very interesting. A few ladies from the acor list are doing this trial.

Rosalie

I have heard two gyn oncs from Sloan Kettering speak this past year. And they both mentioned second look surgery. I was surprised. But they are also doing intraperitoneal chemo. Perhaps the surgery is connected to the IP chemo.

oxoxox karenann
  #7  
Unread 07-06-2003, 04:38 AM
Zero Neutrophils = 4 Days in the Hospital

SirenSong
WOW--Zero Neutraphils. The lowest mine got were 300. Let's hope those pesky neuts keep on multiplying.

This discussion is very interesting. I have my repeat CT in 2 weeks to see if the node seen on the last one has grown. It it has, I will have to discuss the next course of treatment. I too think at this point, more chemo seems the route to go.

I got Carboplantin according to my weight. I received 895 mgs each of the 6 cycles. I was not aware this was a high dose.

Thanks again for this discussion.

Ruth S
  #8  
Unread 07-06-2003, 08:03 AM
Zero Neutrophils = 4 Days in the Hospital

Karenanne.....

You could be right... I could definately be wrong about the second look surgery. But I really do think that that is a thing of the past, or at least according to my docs.

Rosalie
  #9  
Unread 07-06-2003, 08:25 AM
Zero Neutrophils = 4 Days in the Hospital

s Rosalie

Just to be sure, I went looking through some of my old conference material.
The gyn onc from Sloan Kettering was Richard Barakat.
I was quite surprised myself, thinking second look went out in the early 90's.
But like I said, it may be connected to intraperitoneal chemo.
Have you considered going to the Ovarian Cancer Natl Alliance's annual conference this Sept.? Ros, you would be amazed at all the info and it is quite fun to be surrounded with ladies in similar situations. I find it quite empowering!! Plus, I would love to meet you.
Ruth, Ellen, Dina........???? We could have some fun as well.
You know, making lemonade from lemons and all that.

oxoxox karenann
  #10  
Unread 07-06-2003, 11:01 AM
Zero Neutrophils = 4 Days in the Hospital

Hi again Karenann.....

I never considered going but then again I never really knew anything about it except for all the wonderful stuff you keep telling us...

Email me some information.

Thanks.

Rosalie
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