This is so great to hear! Congratulations!
oops, that's RATE of VL increase..
Don't recall the exact numbers but the TMA/PCR SVR timeline study began with over 500 and ended with > than 300 with SVR (triple therapy has greatly increased the favorable odds it seems) of genos 1,2 and 3. Three graphs were included (one patient each of each genotype) of relapse with horizontal lines showing TMA at 10 IU and PCR at 50 IU and all three showed the same rare of viral load increase. Now this was only 3 of just under 200 but they all were detectible by TMA at week 2 and by PCR by week 5. Further, all three maxed at or near 12 weeks then either came dawn a bit or flat lined to week 24. The only problem mentioned with TMA is it does on occasion give false positives. Having said that, I saw another study where one 12 week SVR patient tested positive at 24 wks, this being a PCR and again the beginning study population was over 500. The conclusion they made was that 12 week PCR is 99.7% = to 24 week PCR. The FDA has approved it, the drug companies use it, I don't know why our doc's are so damn stubborn about it. I'll bet they wouldn't wait 24 weeks if it was a family member.
Excellent news. Congratulations! I agree; your chances for being UND at 24 weeks are superb! No point in delaying your life.
Yes, docs tend to avoid straying from protocol, but good that you could convince yours to test early. I had a hard time convincing mine to test at 12 weeks - he wanted to wait until 6 months for the PCR. He saw the fire in my eyes and I was fully prepared to argue for the 12 week test and he gave in. From here, just do the normal labs until everything is back in range, then another PCR at one year is recommended. My TSH was also a bit high near the end of tx, then came back down into normal range after tx. Also, my Vit D3 levels were very low throughout tx.
@ Jules - hmm, never saw that on the Neupogen/spleen, but I also never had that issue. Got lucky I guess.
Thanks for the reply. Thyroid was checked a few times during treatment and was mildly high once but resolved... but I suppose I should get it checked down the road if resolution of remaining symptoms stop improving.
As for SVR, all the testing numbers indicate 12 wks = 24 wks (used for drug trials and FDA approved) and in fact 4 wks is within 1% of 24 when using TMA = or < 10 IU. So considering (depending on which study you cite) there's a 1% to 3% chance of relapse over the following 2 years... even a 4 week TMA would place me at only a1 1/2 to 3 1/2 risk, and since I got a 10 week... I feel confident that there's no logical reason to delay planning my life for another 3 1/2 months. I plan just get the routine follow-ups annually over the next 2 years now. I had to print the studies and hand carry to my doc to get it done though... we are set in our ways....
Indication
NEUPOGEN® (filgrastim) is a prescription medication used to reduce the risk of infection in patients with some tumors, who are receiving strong chemotherapy that may cause severe neutropenia with fever.
Your doctor will do blood tests to monitor your blood cell counts before and during your treatment with NEUPOGEN®.
Neutropenia is a condition where your body does not make enough neutrophils, a type of white blood cell important in the body’s fight against infection.
Important Safety Information
Do not take NEUPOGEN® if you are allergic to NEUPOGEN® or any of its ingredients. Do not take NEUPOGEN® if you are allergic to other medicines made using the bacteria E coli. Ask your doctor if you are not sure.
NEUPOGEN® may reduce your chance of getting an infection, but it does not prevent all infections. An infection can happen anytime you or your child’s neutrophil counts are low. Look for signs of infection, such as fever, chills, rash, sore throat, diarrhea, or redness, swelling, or pain around a cut or sore. If you or your child have any of these signs, contact your healthcare professional immediately.
NEUPOGEN® can cause serious allergic reactions. These reactions can cause a rash over the whole body, shortness of breath, wheezing, dizziness, swelling around the mouth or eyes, fast pulse, and sweating. If you start to have any of these symptoms, stop using NEUPOGEN® and call your doctor or seek emergency care right away. If you have an allergic reaction during the injection of NEUPOGEN®, stop the injection right away.
Your spleen may become enlarged and can rupture while taking NEUPOGEN®. A ruptured spleen can cause death. The spleen is located in the upper left section of your stomach area. Call your doctor right away if you have pain in the left upper stomach area or left shoulder tip area. This pain could mean your spleen is enlarged or ruptured.
A serious lung problem called acute respiratory distress syndrome (ARDS) has been reported with NEUPOGEN® use. Call your doctor or seek emergency care right away if you have shortness of breath, trouble breathing, or a fast rate of breathing.
If you have a sickle cell disorder, make sure that you tell your doctor before you start taking NEUPOGEN®. If you have a sickle cell crisis after getting NEUPOGEN®, tell your doctor right away.
Talk to your doctor if you experience unusual bleeding or bruising while taking NEUPOGEN®, as this could mean a decrease of platelets which reduces the ability of blood to clot.
The most common side effect you may experience is aching in the bones and muscles. This aching can usually be relieved by taking a non-aspirin pain reliever such as acetaminophen.
Some people experience redness, swelling, or itching at the site of injection. This may be an allergy to the ingredients in NEUPOGEN®, or it may be a local reaction. If you notice any signs of a local reaction, call your doctor.
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Interesting....although I would have still taken it to stay on tx. I have never heard this nor did my Dr mention it.
Great news! Looking forward to your SVR :). Spleen enlargement due to Nuep? I agree with Flcyclist Ihave never heard that before. No offense but I hope your Dr is wrong. I probably did 20 shots during tx. Lets us know how you are doing.
Congrats! It looks like you're well on your way to SVR. The rest just appears to be a formality, but you should be able to breath a sigh of relief now. It does take some time for the skin issues to calm down as your body continues to adjust. I was on neupogen for about 40 of the 48 week tx, and I'm not aware of any spleen issues resulting from its use. If you haven't already, you may also want to check your TSH levels to see how your thyroid endured the tx. Best of luck as you continue to recover.
That is best thing ever to read!!!! I'm so happy for you!!! Kitty
great!!! never get tired seeing those 3 little letters........SVR............
hopefully i am right behind you. do my 24 week post this june
barry