Got a call today from the nurse to tell me they are concerned my ANC dropped to 325 cells/UL and the WBC is at 2.8 Thous/uL. Last week the ANC was 570 and WBC 2.7. I must say I was struggling on my bike ride today, so this might be a good thing to help my energy level some.
For those that had the rescue drugs (Neupogen), did you notice a large difference in how you felt, energy level, etc?
How often did you have to do the injections/week and how many weeks were necessary to bring the ANC back in range?
My Gastro has referred me to a Hematologist to review the bloodwork and make recommendations. They indicated this is often done if the rescue drugs are necessary to avoid dose reduction, which is certainly the last resort. I was a bit surprised, since I thought the Gastro would handle this. Is this normal procedure or sound a bit odd? I really have confidence in my Gastro, but in hindsight I wonder if I should have begun with a Hepatologist. Hindsight is always 20/20, right?
"For those that had the rescue drugs (Neupogen), did you notice a large difference in how you felt, energy level, etc?
How often did you have to do the injections/week and how many weeks were necessary to bring the ANC back in range?"
No. It's the ribos killing off your red cells that makes you feel weak and OOB. The WBCs are your infection fighters.
I did two Neups per week (two half doses, compounded by the pharmacy, not factory filled), for the last half of my 24 weeks. I bottomed out at around 300 ANC, and the shots got me back to above 500, usually around 6-700.
Even when my WBC and neutros came back up, I still felt shi tty.
Took Neup the last 48 weeks never had sx with it. Took it once a week, appox. 12 hrs b4 a CBC. It was a bit of subterfuge to stay on tx cuz I couldn't trust the people treating me. I know after 60 hrs my WBC was at cutoff again so there was room for a second or third shot during the week. The Neup works in hours, depending on the person though it wears off in a matter of days. Once you find your maintenance level it'll likely be with you throughout tx. ANC's are components of White Blood Cells, they fight infection. If low RBC's are your problem the rescue drug is Procrit (sp?). Post your RBC and Hemoglobin numbers, people also report fatigue caused by thyroid problems (if I read the posts right). All the best.
A Hepatologist will also call in a Hematologist for additional consultation if blood levels drop too low. A good move on the part of your GI and with an effort to avoid dosage reduction and for the Hematologist to see what's going on with you in general from a perspective your GI doesn't have. Not a bad thing to have this extra expertise as part of your treatment team.
As for you struggling on your bike ride, I don't think Neupogen is going to help with that. As Fnzol said, that's HGB that impacts your energy and breathing. What is your HGB at these days? The Hematologist would be interested in that also. You might have to trade biking for walking at some point - or swimming, if you do that.
Hang in there and get to that 12 week marker and take it a step at a time. Good luck.
I didn't realize a Hepatologist would call in a Hematologist for consult, so this relieves my concern for procedure. I really do trust and have faith in my GI, so I didn't want to shift gears on trt at this point. I've been requested to get into the Hematologist next week, prior to the GI appt, so will be doing so quickly.
Regarding the riding, I'm not overly fatigued, just not at the level where I was a month ago. But I fully anticipated this would occur - just a bit frustrating. Riding at a slightly slower pace and possible shorter distances will solve that problem. This is part of my mental therapy that I don't want to give up. Riding with the faster groups will just have to wait till later.
I didn't get the RBC and Hemoglobin numbers from the nurse, but do plan to get them next week. Thanks all for your good advice and thoughtful responses as always.
Hi - As others have said, it is the low RBC and HGB that has me drooling on myself. There isn't much to be done about that unless it is low enough to warrant Procrit. My doc is particularly reluctant to do the rescue drug thing unless I drop below 9 on the HGB. I really cut back activity - my body told me to do so and whenever I did do much, I paid for it. The set back is temporary and before you know it you will be biking up Mt Washington!!
Sorry to hear you’re struggling a bit. I agree with others this sounds like a good move; the hematologist should be well versed on blood management and probably more aggressive than either a GI or hepatologist regarding these issues.
I treated with a large research and transplant center here on the west coast; besides the staff of hepatologists, they maintain nine in-house hematologists/oncologists. Again, I think this was a good move on the part of your GI.
I'd be much happier if a Hepatologist was watching my blood counts and prescribing Neupogen...so, you're in good hands there!
As others have said, your WBCs shouldn't have anything to do with your energy level, however, even though it "shouldn't" have anything to do with it, I have heard others say that they did feel better in that regard once they started Neupogen. I always thought that was just a coincidence though.
Although the thread i referenced below is old I think it is still relevant regarding hematologists vs hepatologists monitoring blood and prescribing rescue drugs during hcv tx.
I am not recommending either, but I know of one person during the past year who was treated by a gastroenterologist and was referred to Hematologist who did not understand how to manage hcv for precisely the reasons frijole mentioned below. I know of many who were prescibed rescue drugs by their hepatologists (including myself) without being refered to a hema. I any event, insure that your hema has experience with hcv tx.
(I hope you don't mind me quoting your post frijole:)
"by friole, Nov 27, 2006 12:00AM
The hemotologist addresses the side effects that occur on tx. The hemotologist will not treat hepatitis C, only the blood issues of neutrophenia (low absolute neutrophils) and anemia (not enough oxygen in the blood). My GI (gastroenerologist) wanted me to line up a hemotologist right from the start because he said it was hard to get into one on short notice when you really needed one, and for that, I was really grateful.
In my town hemotologists are associated with and work with the oncology department of the hospital. They are primarily concerned with blood issues of chemotherapy. Mine was not familiar with issues related to hepatitis C. Treatment of ANC for cancer patients is different than the treatment of hep C patients in that cancer patiens get a lot of strange and dangerous infections when ANC gets below 800 (.8); C paitents are not know to get these odd infections and our ANC can drop to .5 before there is concern.
Therefore, you need to ask if the hemo has worked with hep C patients before. Even if he has not (mine hadn't) that does not mean you should not use him. In your case, it would be much more convenient to have the labs drawn on the hemo doc's orders and copies faxed to the hep doc. (Is he a hepatologist of gastro guy?) That is what I would do. Even the PCR's can be drawn on the hemo doc's orders and sent to the hep doc but the hep doc is your primary and he cannot "look over the shoulders" of the hemo doc.
Hepatologists may want to do everything including monitor the blood. GI's usually don't. Still, you should be able to have all the labs done locally, no matter who monitors treatment.
I aksed for PRocrit when my HGB dropped below 11. The doc would have waited until it was in the 9's but she honored my request for QOL.
Neutropenia does not increase the risk of infection in patients whose neutrophil drop is due to SOC treatment. In fact according to several studies a sharp drop in neutrophils is a predictor of SVR.
Reduction in Neutrophil Count During Hepatitis C Treatment: Drug Toxicity or Predictor of Good Response?
"...Neutropenia was not associated with an increased risk of infections.
In this observational study, higher baseline neutrophil count and fall of neutrophil count during the treatment of hepatitis C was associated with achieving sustained virological response. These findings could have important implications for the monitoring and management of HCV treatment with peginterferon if they are confirmed in other studies. "
Risk factors for infection during treatment with peginterferon alfa and ribavirin for chronic hepatitis C†
Article first published online: 29 JUL 2010
"Multivariate logistic regression analysis revealed that age >55 years (odds ratio [OR] 2.06, 95% confidence interval [CI] 1.19-3.56, P = 0.01) and baseline hyperglycemia (OR 2.17, 95% CI 1.15-4.10, P = 0.016) were associated with an increased risk of infection during HCV treatment. Cirrhosis and chronic obstructive pulmonary disease were not risk factors for infection. Conclusion: Bacterial infections during treatment with peginterferon alfa and ribavirin are not associated with neutropenia. Older patients and patients with poorly controlled diabetes mellitus have a greater risk of developing infections during HCV treatment. (HEPATOLOGY 2010)"
Rate of Infectious Complications during Interferon-Based Therapy for Hepatitis C Is Not Related to Neutropenia
"Among recipients of high-dose chemotherapy for the management of hematologic malignancy, neutropenia is highly correlated with risk of infectious complications . In this patient group, G-CSF reduces the duration of neutropenia [8–10]. G-CSF has been demonstrated to be useful in reducing risk of infection in some [9, 11], but not all, studies [8, 10, 12]. This specific beneficial effect diminishes with increasing age. Overall mortality is generally not altered by the use of G-CSF.
Neutropenia frequently complicates IFN-based antiviral therapy for hepatitis C . The relationship between neutropenia and infectious complications in this instance is not well described. In the absence of data, reduction in IFN dose and/or G-CSF dose for those who develop neutropenia while undergoing IFN-based therapy for HCV infection are often initiated in clinical practice, as suggested in treatment guidelines  and mandated in most clinical trials . Reduction of IFN dose is well accepted to have a detrimental effect on the rate of sustained virological response . Despite G-CSF use, there is little evidence that it results in increased sustained virological responses [16, 17] or a reduced rate of infection. Furthermore, it is expensive.
The immune suppression produced by high-dose chemotherapy used to manage hematologic malignancy is more broad-based than that of IFN. Furthermore, mucosal injury to the gut further compromises host defenses against infection. This likely explains the apparent difference in infection-related risk of neutropenia. Our study demonstrates that nadir neutrophil count and magnitude of decrease from baseline are not correlated with rate of infection in recipients of IFN-based therapy for HCV infection. With this is mind, the use of G-CSF to reduce the risk of infection in this instance is not supported. These findings are corroborated by others who likewise did not identify neutropenia as a risk factor for infections during treatment with IFN-α2b and ribavirin . In this study, a bacterial infection rate of 18% (22 of 119) was reported, which was a similar rate to that in our cohort (28 [13%] of 211 courses of therapy)........."
My anc tanked quite early in tx, at week 6 it was at 280 (.28) and I was prescribed 300 mcgs of neupogen for the remainder of tx, the neupogen brought my levels up immediately. My anc still went dropped to 250-400 several times at the end of the neupogen week and I began splitting the doses.
Although it's not common I did get an infection the first time my ANC dropped. I guess Ill never know for sure if it was because of neutropenia or not. I took antibiotics for a month before the infection resolved.
Regarding your breathlessness. As others mentioned it could very well be your hgb dropping. If you are anemic (HGB under 10) hopefully the hema understands enough about hcv tx to prescribe procrit rather then reduce your riba. The procrit should help you to feel much better if hgb is under 10 currently.
I developed severe anemia during tx although it took a while and subsequently I took procrit for about 30 weeks every 4-5 days.
I don’t see an issue with consulting a Hematologist as an addition to the treatment team if the GI feels he needs that extra expertise - I think that's a good move that he's getting extra input. Dave's point is well taken however and perhaps some questions to him/her on how much experience they've had with treating people who are undergoing treatment for HCV. My treatment team had my FP refer me to an Endocrinologist local to me but my treatment team wasn't happy when I told them what his planned approach was with me, so got me in to see an Endocrinologist in their area. He was much better and had some understanding of the impact of Interferon on they thyroid, I could tell at my first appointment with him, worth the one hour drive for me to see him. If you like your GI, just ask good questions all the way through and if you're getting concerned about the treatment path your GI is taking, perhaps a 2nd opinion from a Hepatologist will let you know if your GI is on the right track, if you feel that's something you need/want to do.
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