Dr says stop, I'm going to cry.

[orphanedhawk]

I just got a call from my doctor’s office and he wants me to stop tx for a week because of my low wbc. I am very upset. I was just getting ready to do shot # 7.  He didn’t even offer me an option of taking neupegen and now he won’t be in the office until Monday. And he didn't phone me, his assistant did.  I don’t want to stop! I want a different doctor, now!  Anyone have a great doc in the north bay area?

[mremeet]

Sorry to hear this. What are your Neutrophil (ANC) values?

[orphanedhawk]

I don't know. They haven't sent me my copy of my blood work yet. I do know my wbc was 1.4 and I think my platelets are 33. The receptionist couldn't tell for sure. I don't know if I should cry or break a window.

[mremeet]

Again, real sorry to hear about this. But maybe you can make an emergency appointment with a hemotologist tomorrow? They might see you the same day, and possibly help work your problem out ASAP. They will likely want to see your labwork though, is there any way you can get it from your doctor office even if he's not there? You should also be aware that the acceptable threshold of ANC's varies from doctor to doctor. For instance, the trial I'm currently enrolled in has 750 as the threshold where either IFN is lowered or neupogen is used (after the first 12 weeks only). But I've heard of many doctors allowing a much lower threshold than 750. I think jim mentioned his doctor would allow down to 400 or so, I've heard others say similar things. Apparently the traditionally accepted (lowest) ANC levels were established from cancer patients taking chemo. And their acceptable limits are higher than ours, in practice otherwise healthy HCV patients can tolerate ANC's quite a bit lower than these cancer/chemo based limits.

Also, you should know that sometimes ANC readings can come back artificially low. Apparently ANC's are relatively fragile, and if the blood sample is shipped out and dwells a few days before being tested, the neutrophil readings can read artifically low. Also, a large percentage of neutrophils are ordinarily trapped within your bodily tissues and are not actively circulating within your bloodstream. If you were to exercise vigorously, greatly increasing your bloodflow and muscle movements for a reasonable period time, this would "shake loose" some of these trapped neutrophils, thereby returning them to your bloodstream. And if you were to sample your blood at that point in time, your neutrophil readings would be higher.

A few months ago I went through what you're going through. I had a neutrophil reading of ~600, which was well under the limit of 750. So I ran up and down several flights of stairs prior to having my blood resampled. I was anemic, so it wasn't easy to do, but bottomline is that you want ot get your blood pumping. Then I had my blood sampled again, and this time it was analyzed at a local lab on within a day or two. My reading then came back as 750 on the nose, thereby sparing me a dose reduction of IFN.

Anyway, you might want to consider trying to work something like this out with your doctor, or possibly the hemotologist mentioned earlier. Best of luck sorting it out, take care.

[jmjm530]

The good news is that it's probably another one of those false doctor alarms we read about so often here -- panicking unecessarily over a drop in WBC while ANC is still pretty good. The bad news is you really need a good liver doctor to confirm this before taking any action on your own as well as to watch over your low platelets.

There's a doctor Robert Gish, California Pacific Medical Center, San Francisco, that some here treat with. You might start with him, or someone on his staff, if you get no other replies. Make sure to convey to them the urgency of seeing one of the doctors right away or they will probably make you wait past your next shot.

Hope it all works out.

-- Jim

[sfbaygirl]

OMG, I am so sorry to hear this. You know my dr. tried to cut my meds around seven weeks due to low WBC's. Thankfully, I had a hemotologist who worked with me and I had in place at the time. Platelets that are in the 30's are pretty darn low and I would want Neumega or something to boost them, instead of stopping tx. As MRe says, platelets and ANC go up and down often, so one test should not preclude you from continuing tx. Seven weeks is alot of work you have put into this already and you need to fight to get the best care. Yeah, we all think that the dr's will take care of us, but we are our best advocates. Are you going to Gish's office? I thought you were? I would call first thing in the morning, as they have an office up there. If not SF is not that far. Tell them it is an emergency, since it is Friday tomorrow, do it first thing. Hopefully you can get in! There are remedies for low ANC and low platelets, they aren't pleasant, but it's better than having to stop. Once you stop tx, you have fewer chances of SVR and getting into a trial. I would avoid this at all costs. Of course, I don't have any strong opinions here! LOL Do freak out and get some good care. Gish's office is nearby and not that difficult to get into, if not go to the ER. If you want lindacal at sbcglobal dot net, you can reach me tonight and I can help you figure things out up here in NO. Cal.

[orphanedhawk]

jmjm,Thanks. I've already called the Gish gang in S.F. and someone is supposed to get back to me within 24 hours.
mremeet, I still am not aware of which numbers are ANC. Sorry to be so ignorant.

[sfbaygirl]

The scheduling person in Gish's office is not great at getting back. I have a great email for the dr. though....

[wyntre9]

Hi Hawk.

I'm having a platelet problem, too.  Less than a week after the first shot (I started 12/23/06) my WBC was down to 3.5 (4.5-10 is normal) The next week it went down to 3, then 2.2.

My doc called me TWICE last Friday, first to tell me I had to go immediately to a hematologist, ten minutes later to tell me he'd made the appointment for me, given the other doc my insurance info and to give me directions to the hospital.

(I think I'm in love.)

He also told me not to take any meds incuding the shot until I heard from him.  When I got to the hematologist he did a finger-***** blood test.  He said my WBC had gone back to 3.0 but he gave me a shot of neupogen anyway and said I should wait to hear from my gastro before I continued tx.

That evening, I called my gastro to ask him what to do.  His answering service said they'd put me through to his pager.  He called me 5 minutes later and after listening to what happened with the hematologist he told me I could resume shots.

(Did i mention I'm in love?)

He sent me for bloodwork Monday, saw me in his office Wednesday, told me he wants me to follow up with the hematologist and said he wants to see me at least every 2 weeks from now on.

Maybe i got lucky, with my doc, at least.

Hang in there.  I know how you must feel.  I was so confused last Friday, when all this was happening.  Thank G my doc contacted me personally.

Wyntre

[orphanedhawk]

Thankyou so much for your kindness. I haven't been seeing Gish and now I wish I had been.
  I've been debating whether or not to take the half dose of interferon, and now I will. He had me drop to half dose last week and it did make me feel a lot better.
    I will phone Gish's office tomorrow morning and I can get to the city in a few hours, depending on traffic. My husband will drive me. I have a key to a friend's apartment near Lake Merrit so I am fairly set, even close to good Vietnamese food.
  What a roller coaster.

[mremeet]

If you get your labs, you should see a value either called "neutrophils" or it's also called ANC (not on my labs though). Neutrophils are a type of white blood cell (wbc) that helps to fight off infections within your body. That's why they don't want them to drop below a certain level - it could place you at risk for getting an infection. So that's usually the thing they're looking at during treatment when they say your wbc's are low.

[chcnme]

D*** I am so sorry!  That doc needs to get you some Neupogen - it's not like this hasn't been coming or has been a possibility with you  (sinking lower and lower).  I'm sorry - it just irks me that he hasn't gotten you to the hematologist or gotten you some neuopogen and had his assistant call you.  The ANC?  If you have your wbc, you might be able to figure it out yourself.  Here, this might help you (the link).   Hang in there OH!  

http://www2.mc.duke.edu/9200bmt//ANC.htm

[orphanedhawk]

Do you want to share your beloved doc? I am shopping for a new one.  Thanks.

[orphanedhawk]

Oh well, whats life without drama? ( I already did my crying). I am going to take my half shot and hopefully see someone asap.
  Maybe in hind sight I'll be glad this happened. As for now, I can't write it down without getting censored.

[Moniker]

The same thing happened to me. My doctor had me skip week 7 shot. The doctor also had me cut pegasys dose by half at times, or by a quarter at other times.

My week 12 PCR was undetectable. Before tx, I had 1.9 million viral load. I was genotype 1A, stage 2, grade 3. I'm a 57-year-old male.

I started neupogen at about week 12, and went to full pegasys doses from week 14 through week 48. My PCR was undetectable six weeks post tx. I'm SVR!

I wish I'd been given neupogen right away because all that skipping doses, and cutting doses added a lot of anxiety to treatment. Treatment did work for me anyway; I'm cured now. I feel very well. I'm very glad that I treated.

When the doctor was cutting my dose, he said it would be ok because I was getting 80%, 80% of the time. I would have been happier with 100%, 100% of the time. But it did work for me. That's my experience.

Bob

[willows]

Please be really careful about taking that last half of a shot, do you have folks around that can hover over you for the next day or so?  The low counts are serious if the tests are correct, so keep a good safety net around you.  

I guess the only issue more head-banging than IFN is having issues with your blood counts, I mean, how freakin hard does it have to be?  Get a little mad, get the blood flowing, always helped me.  

Again, it sounds like you ought to have some grown-ups around that can pass on all the pertinent info if it is needed.  This is not to be scary, but is just the sword and shield for the fighter we all have to be.  Well armed is well prepared.  And a smart babysitting-type is a comforting thing too.

Willow

[wyntre9]

Sounds like you're on the west coast and I'm near NYC, but just in case, his name is Dr. Donald Kutner from Fairlawn, New Jersey.

And it's not like he started taking me seriously without some heavy-duty prodding on my part.

I sent him and his office staff a firm but emphatic letter when I first started tx, thanking him for his skill, his expertise, blahblahblah, but stating I was unhappy with the communication or lack thereof.  (I began shots right before Xmas, silly me, not realizing that apparently ALL doctors are incommunicado the last 2 weeks of December.)

I also faxed him a detailed daily log of my symptoms.

His staff must have read the letter and the symptoms log (as I'd intended).  Now that they know I'm suffering and I'm polite about it they've taken me under their wing and since I'm on their radar, I'm on the doc's radar, too.

If he hadn't done such an abrupt turnaround, i was going to look for someone else.

Nothing like having to audition for the part of patient.  

Good luck, Hawk, and hang in there.

Wyntre

Nothing like I've risen to the level of and rently,  with ive

[orphanedhawk]

My husband is here with me and very supportive and calm. I'm not worried. I've actually felt so much better this past week on the half dose. I just feel like going ahead with the shot, gives me a little more leeway, time wise. I will try to see someone tomorrow and have left a message with Gish et.al.
  Wyntree, I grew up in New Jersey and had an uncle in Fairlawn but that was a lifetime ago. You're right, I'm on the west coast. And I'm not coming to New jersey if I can't eat pastrami.

[wyntre9]

I wouldn't come back to NJ even if I could eat pastrami!

You're lucky to have your hub there for you.  Please try to stay calm.  I know how hard it is, but you're gonna be ok.

Wyntre

PS - wait a minute - I just realized I didn't get it.  Why can't you eat pastrami?  Are you a vegan?  I am but my parrots aren't.

[sfbaygirl]

Isn't that the truth? Auditioning to be patient? Unfortunately for me my dr, was so behind in his hep c reading that he finally admitted to me that "I" knew more than he did. Quite a confession, huh? Of course, I had my suspicions and should have moved on earlier, but I didnt' know as much then.

Luckily, I did find the truth of the situation. I have to extend due to not knowing all the recent studies, what PCR's to take and when etc. (Besides the fact that my dr. thinks I am UND at 10 weeks, when I AM NOT) I don't blame anyone, but I sure wish I had been more aware and listened to some of these wise people here who warned meto get sensitive early PCR's and good dr's. I thought I had time to think abou† all of this, but I didn't. NOw, I am looking at 72 weeks, possibly due to not being aware enough myself. Who else can I blame? I can't blame the dr. whose primary practice is endoscopy. I should have checked out specialists in this field. I didnt'. How did I know it was such a minefield of tx and practices? NO ONE does. That is the point...and to all newbies, beware! Get the best dr. NOW, get early sensitive PCR's and get all your labs sent to you, as well as all ultrasounds, biopsies, CT's, fibroscans, fibrosure's, CBCs. etc. Create a binder with all of this, it will serve you well. I have pulled out my binder and been light years ahead of the dr. as far as pulling things up. This is your life. This treatment is yours and is NO picnic. Be sure you take it seriously and read up, create files and question everyone. NO one takes your healh as seriously as do.

[orphanedhawk]

I can't eat salty food due to cirrhosis. And nobody who has Hep C should be eating things like deli meat. I really love where I live now, it is so beautiful.
  Are you the one who is into birds? If you send me an e-mail address, I'll send you photos of the orphan red tailed hawk I cared for.

[aquarius64]

how funny, i live in nj and am originally from california. i left there about 6 yrs ago and i haven't been back. i'm afraid if i go back, i won't want to come back here. i don't have much knowledge in your area, but i hope that everything works out better for you. good luck!

[ladybug52]

How frustrating! I would be a "buttinsky" but am not familar with the low wbc's myself. On the positive side, others have spoke up and said they were still able to clear. You have a lot of good advice from some who have been there done that, and a great supportive husband. Good luck getting in to see Gish!
Bug

[orphanedhawk]

Oh you lollapalooza!

[ChrisDDD]

I agree with all of this advice.  Just my two cents' worth, I was only able to do 9 weeks of Infergen/Riba before I had to be taken off treatment due to retinal bleeding.  However, I thought you would be encouraged by the fact that my WBC took a nose dive right after I started treatment, but then in the next two lab draws the WBC and RBC started coming back up on their own, without Neupogen or Procrit.

Also I agree with keeping careful track of your records.  Mine was almost overwhelming to my doctor, but I presented him with all lab and biopsy results, doctors' notes, etc. categorized by treatment drug and results, chronologically.  It made their job much easier for them, and they can see that you're on top of your disease and taking charge of your health.  I think it helps.  Good luck!

[GoofyDad]

Glad you ladies are getting the support you need. That can certainly become important. Meanwhile, I definitely endorse CPMC, but if that doesn't work out, you might <a href="http://www.napavalley.edu/apps/comm.asp?Q=P741">check out this gal</a>. Appears she's teaching now, but she's definitely dialed into the local HCV treatment scene. Maybe she can help you out.

[sfbaygirl]

I want a photo of the Hawk! Please. I heard a great horned owl the other day and am really wanting to see one of them!

[nitramog]

call the same number in san Francisco hospital and ask for doc Walkil our call the liver transplant part of the hospital doc gish and doc Walkil  are there allot

[susan400]

My doctor always used the 5.0 as the low cut off for when he would agree to start the Neupogen.  For most of my last treatment, he just had me having to avoid crowds, flying, sick people, etc.  It wasn't until the 38 week (approx.) that I hit the 5.0 mark and he added in the Neupogen.  

I hope that you're able to find another doctor soon, who will be willing to monitor you and keep you going on treatment (if that's what you want).  I'd get on that phone, and start calling them tomorrow!!!

Susan

[NYgirl]

From what I understand the Neup works really really FAST.

Maybe if you make your doc a deal like "I'll stay in bed for a few days and take it really easy just give me the Neup NOW" it will work.

Sometimes we have to really PUSH with a doctor to get what we want. I know it sounds ridiculous but if I was you I'd bug the **** out of him until he did it. In a nice way of course.

Print out some FACTS so that you can read them to him (ie: the average time for Neup to work is.....Neup is the rescue drug responsible for...) and write it all out so you can present a VALID ARGUMENT - and not just an emotional one.

Then GO FOR IT.

I sure wouldn't stop if I was you either - I'd even go to a hemo and see if THEY could prescribe the Neup

Of course I don't know exactly what your WBCs are but I do believe this can be cleared up quickly so TALK TO THE DOCTOR.

You CAN do it!

[sallyo]

My insurance company dictated at what point I would receive neupogen and there rule was below 2.0.  Just so you know My doctors seemed to be ok with that,  They are a group of hepotoligist at UM
  Like someone said before wbc is not the only indicator of immunosuppression   Do you know much about deer?

[compulsive]

Good move looking for a new Doc.  Lot's better advice has already been given than I could come up with - so I'll just wish you the best possible outcome for this.

[Kalio1]

Did you take the half shot? I hope so, hope you get a new doc but I still strongly encourage you to get a Hemotologist. Maybe you can find one that is closer to you than Gish's office..be sure and stress to them you need to be seen SOON.

With a new Hemo and Gish or one of his partners onboard I think you will be in the pink.

ounds like your current doc is a bit skittish about "pushing the envelope" probably due to his limited experience with Hep C and his liability concerns, that's my hunch anyway. Keep at it, I know it is hard when you feel cruddy but with the new docs on the case you will feel more confident. I'd keep up that half shot and try to get back to full dose ASAP

[orphanedhawk]

Yes, I did the half dose last night. Dreamt about growing wings until the racoons woke me trying to get into the cat food. I start agressive phone detail in 15 minutes.  I can't even talk to my current doc until Monday but hopefully I'll already have something set up before then. Thanks for everybody's support and encouragement. Oh, my wbc dropped from 1.3 to 1.4 That was his reasoning to stop my tx. He didn't seem so concerned the week before. But I have to stop focusing on him and find a new Dr.

[friole]

1.4 or 1.3 is awfully low white counts.  If you have birds, do take care as they do carry diseases that humans can get (I am not talking about bird flu).  

Your absolute neutrophils are listed as #NE or #ANC.  If you can't find them, here is an ANC calculator.  If you don't have segments and bands (baby neutrophil counts) don't worry about them - just plug in 0.

http://www.curehodgkins.com/hodgkins_resources/anc_calculator.html

Neupogen does work fast, and you can take it several days in a row to bring up the counts.  I was on it for about 44 weeks of my 56 week treatment (but I am not cirrhotic).  I hope you are able to get some in a hurry.

frijole

[orphanedhawk]

My ANC is 611. Thanks for the help. I don't have any animals except for a grumpy old cat, I feed. There are all kinds of animals around but they are wild(racoons, deer, pigs etc). And the hawk flew off after Thanksgiving.
   It sounds ridiculous but other then the Hep C, I am very healthy.

[sfbaygirl]

Don't worry about those numbers, but get to the hemo. my WBC has been down to 1.2 and my ANC has been to 400. I refused to go off of tx and took Neulasta/Neupogen and it works really fast. If you can get to a dr. today, they will get you a booster and you will be good to go. I had to get these boosters for several months and now I don't need them any more. Yes, my WBC is fairly low and so is my ANC, but we can go lower than some dr's think. Good hep dr's say so. If nothing else, the ER might give you a shot.

[friole]

Man, I can't run my heater and print out anything without blowing my breaker here at work.  I was right in the middle of posting a comment to you..... so I was printing out my blood work and wham......  

My white blood count was rarely over 1.5 for most of tx.  It concerned the hemotologist, but I didn't get sick but once(and that week I was so sick I never made my draws, so I don't know how low I got).  Anyway, the hemotologist wanted me on Neupogen as soon as the ANC dropped below 1000 but I fought her for a few weeks but when it dropped to 400 I started the Neup.  I fought taking another shot for a long time, but it really wasn't so bad.  I didn't fight the PRocrit because I felt so bad, but wanted to do it only every two weeks, but that was short lived too.

I had weekly CBC's for the duration of tx and increased or decreased the Neup and Procrit according to the results after conferring with the hemo nurse (used to wait for my results and talk to her every week).

Good luck,
Kathy

[orphanedhawk]

I am now waiting for the Gish gang to phone. I haven't been able to get in to see anyone, oops, you're a new patient, oh we need this, that and the other. He doesn't have an opening until. . .
    Now, I'm waiting for everyone to come back from lunch.
      Thanks for everyone's support. I'll make it. I live in the hills so I'm not afraid of catching anybody's yucky sicknesses. The only sick thing here is my brain ( and my liver).

[orphanedhawk]

pdilly:I didn't know what ANC was either. Look at friole's link above.
  I called my Doc and his assistant said I have to stop interferon or it will hurt me. He wants to do weekly labs. I still don't know why he won't consider neupegen but I will ask him on Monday. A nurse I talked with said to keep doing what I'm doing, half dose. She did say my having cirrhosis made things less predictable. She just came from a study at UC Davis and seemed more up on what's now.
  sfbaygirl: I couldn't get anything to come up from the number you sent me but I think I'll try to google him.  I would still like to talk to someone else other than my doc, if only for a second opinion, asap.

[orphanedhawk]

I was in Thailand during that whole Avian flu fiasco. What a joke. Makes you wonder. Why so much attention to a disease that only affected a few people who came in contact with bird feces while they ignore us?

[orphanedhawk]

Oops, I just re-read your e-mail and sent your doc an e-mail with my phone #. Thanks so much. What gets  me worse than stress are too many options. If what my doctor says is true, then I would be sorry but I'd stop tx. I need another opinion from a heptologist.
  After I fell apart crying and got over it, I've been hearing in my head, that silly Monty Python song," always look at the bright side of life"   It keeps me smiling:)
   Thanks again. I'll have to take you out for lunch sometime.

[friole]

Just keep taking your meds until you can get in.  Down worry about the ANC -- you are not in danger yet.  And there ahve been others here with platelets as low as yours but they have made it. Please don't give up.
frijole

[sfbaygirl]

Hope you got the email I sent. Even over the weekend, he will get back to you. I wouldn't worry about your #'s now. Can your dr. send you to a hemo? Let us know how you are doing, stress is the worse!

[Pdilly]

I am looking at my tests and I don't see anything called ANC.

[wyntre9]

SF Girl,

Wow.  you've really been through it.  Thanks for the insight.  It reinforces my strong sense I have to request copies of everything and that If I don't keep track of what's going on between the Gastro, the Hematologist, my Primary Care, the labs, no one else will.

Friole,
Actually, most pet-birds are far more susceptible to human disease then vice versa.  
And as far as the avian flu scare, that's a hoax involving such luminaries as Rumsfeld, Cheney etc., who either were on the tamiflu (which, btw, is completely ineffective) Board of Directors or have lots of stock in the company.

If you're interested I'll post links to some of those sites.

I'm not trying to be argumentative but as an avian advocate it drives me nuts when humans start blaming winged creatures or any other creatures for problems created and propagated by hairless bipeds.  :)

Wyntre

[sfbaygirl]

Good you got the email addy. As you said since you are a new patient of Gish they want all kinds of labs etc.
l
I know Jim has gone to the ER and gotten procrit, not sure what symptom you could use to get Neupogen. Bone pain? I know using certain terms with ER docs works to get you what you need right away. Since you do have cirrhosis, it is more risky to have lower ANC's (Absolute Neutrofil Count).  It is a part of the WBC # and you can add up some other numbers to get to the WBC. I just look at the darn labs, perhaps someone here can tell you the formula.

Google Low White Blood Count and see what symtoms could be associated with it and use those to get your shot. I wonder if you are self pay if you could make your own Hemo appt. Get agressive with your Dr. on Monday otherwise and tell him you want a consult with a hemotologist ASAP. Going to low with the WBC with Cirrhosis can be dangerous, so please do something quickly! Hopefully, Dr. F can help you figure it out. He's a great dr.

[orphanedhawk]

Thanks, I did leave a message at my Dr yesterday. His office phoned and his assistant said its very important I stop tx or it will be harmful for me! The Dr. will phone me on Monday and he still wants me getting lab work weekly. I will ask him first thing why he hasn't suggested neupegen. I hope I can get someone to see me for a second opinion early next week. I realize interferon is a potentially dangerous medicine.
And I am not surprised I am doing better on a lighter dosage but it isn't good enough for my Dr.
  Thanks for your help, maybe your guy will call.

[sfbaygirl]

Well you don't have to worry about that for a week. I would do the ol' squeeky wheel thing on the phone with him. Tell him how worried you are about the low WBC now and want some NEUP to help you now. It works really fast and then it won't be causing any damage. The potential danger of autoimune stuff etc. Your ANC won't go up quickly on it's own even if you stop the meds. They do have on call on the weekends. I sent you an email about this and other stuff. Is that the same hawk? What a georgeous bird!