Still undetected..., that's 2 now

[susan400]

Hi there, hepper family/friends.  I am so glad, now, I've heard that beautiful undetected words again.  Week 4 was the 1st time and now, my week 8 just heard, undetected.  Why does that still shock me?? Now got 3 shots left, the Sovaldi and Riba pills and/or approx. 3 wks left and I'll have the week 12 viral load, then, CAN'T WAIT- will BE DONE.  I am SO READY to be off treatment.  Then, the hard part begins, I wait 6 mon.  My doctor doesn't do a 3 mon. post viral load, he does it at 6 mon. post.  Basically ( and I don't really disagree ), because I wouldn't be retreating again at 3 mon. if it was detected anyway..., and waiting for 6 mon.assures that if there is any lingering copies, that it would definitely show by 6 months post.  I'm of course, hoping that it stays undetected and that I'll never be doing another treatment ever again.  I am so tired of treatments.  Anyway, I am definitely headed in the right direction and thank God for that.  My side effects last night (shot night) weren't fun.  I think my spleen might be enlarged because I've been having alot of pain in the upper left/below left breast- side.  It would go along with the low neutrophils and slightly low leuks....    Anyhow, my Gastro/hep doctor never touches me, never palpates my abdomen, at all.  The only time he's ever actually touched me as far as palpating abdomen was on my first new patient appt. back in 2008...6 yrs ago.  I think it's sort of unusual, but maybe I'm wrong.  He bases all his decisions on the labs and ultrasounds.  Even when I asked him if I needed like another biopsy before I started treatment because it had been 4 yrs, he said it wasn't necessary.  I asked him if for some reason, I relapsed (which I'm trying not to think that way), would I need one then,..., he says, not unless my labs or ultrasound indicated it was necessary.  I miss the old days of medicine when doctors actually seemed to be thorough, seemed like they cared more about the patient than money.  I feel like my Dad's cancer - which took his life back in Oct., was due to doctor's that basically didn't pay attention or put the pieces together.  They totally screwed up with my Dad, kept sending him from one specialist to another, getting one test here, another test there and they just totally jerked him around and missed his cancer..., even though he was a post prostate/bladder cancer survivor and yet, they still totally misdiagnosed him and missed his metastatic cancer.  They had wrongly diagnosed him with dementia and then, when they actually realized their error and that he actually had cancer in his bones, liver, all over him.., they said, actually he doesn't have dementia.., he has cancer and the mental issues are caused by the cancer leaching calcium out of his bones, making his calcium go through the roof-which caused his dementia symptoms.  They tell us this when basically at that point, he was already dying.  He goes from being normal in his mind, but with pain all over him.., in March, to being diagnosed with dementia in Aug., to be dead in Oct.    So, yeah, I get a little mistrustful of doctors when it seems like they aren't being thorough.  Susan400  

[susan400]

I am glad to hear that your doctor is looking at your belly..LOL.  Mine just 'looks at it with labs and ultrasounds', but never physically touches my abdomen at all.  I remember when I first started with Gastro's and Hepato's, doctors, they would palpate/thump abdomen at like every visit.  Feel for liver edge, etc.  That seriously never happens with this doctor.  Been going to him since 2008.  He just walks in shakes my hand and sits down, opens chart.., that's it for any hands on approach.

Susan400

[Buba1962]

Hi Susan , I thought i had already commented on your encouraging news. Guess I missed it . Congrats ! I am on day 5 of same treatment so love to hear good stuff .
As to your doctor , hmm, they are always looking at my belly . 2 years of visits and procedures before treatment . They always say the same thing with a puzzled look "well you look great " that really doesn't make me feel any better . Lol  keep up the good work!

[jsf52]

Congrats on the UND.  Can't wait to hear those sweet words SVR.

[madelefant]

Rock on sister!!!

[susan400]

Thanks Mary for your sweet words.  I am wishing you all the best too, for your SVR!!  We can't help but be anxious on each PCR test,  It just goes with the territory.  

Susan400

[Mmorgan854]

Susan, please know that your encouragement an kind words have helped me tremendously since I don't have a good family support system.  This forum has been a lifesaver of sorts. You an many people on this site have pretty much gotten me to this point.  Just wish I knew of this forum in the early 90s if it was around then.  Regarding your father, your not alone in that experience unfortunately.  My father was in an experimental medication study with the V.A. in the 90s.  They detected a lung tumor an " watched " it until it was too late.  I begged my father to quit the experimental meds an have the tumor removed but he was confident from listening to dr. That everything would be o.k.  By the time they decided to remove tumor it had metastized to brain with all symptoms of dementia,  so sad.  I believe he could have lived longer if he would have not listened to the V.A. doctors.  They used my father as a guinea pig, so to speak by encouraging him to finish the study instead of treating immediately.  I know your pain when it comes to the feeling that some professionals don't seem to care.  Wishing you all the best an SVR. TAKE CARE. MARY

[susan400]

Thanks everybody for your kind words and understanding. These boards are great and truly my best support. I can only hope that I've offered some support along the way.  I don't know that I'm any more patient than the next person though.  I actually will wonder, after I actually finish my treatment in the next 3 wks.., and then, wait the 6 mon.  I'll probably be wondering for the next 6 mon. But, don't forget, I still will have another PCR at the 12 wk end of treatment check.   I had viral loads scheduled by my doctors off for pre-treatment, week 4, week 8 and week 12 and then, at 6 mon. post.  But, the thing is, I had pushed off other doctor's appt.s for other things, that I didn't want to deal with on treatment, until after the treatment was done.., like in the weeks after.  Like for example, mammo, bone densitometry, dentist, asthma/allergy doctor, I pushed all that out.  So, once I complete the hep treatment, I'll have all that to keep me busy.  Then, I have my mother that just sold her house and is moving to an independent living facility, here in my town about 20 min. away..., the week I finish treatment.  Actually, all this came about, after I was already into my treatment, had already started it.  Then, all of sudden, she gets an offer on her house, schedules this move, etc. and I'm like oh great timing, not..   Like I'm not really feeling my best and wanting to be packing a house when it's 100 degrees outside and I'm on treatment.  So, actually, I had to say it, but I left a lot of it up to my sisters and her liquidators.  I couldn't just reverse course and stop the treatment and I had to be here in town to be going in for regular labs and getting extra CBC's and Neupogen shots.., and I wasn't going to be able to be physically 3-1/2 hrs away in another town.  So, now, just when I was hoping that the moving day was supposed to be after I was off my tx drugs, I find out today that she's gone and moved the moving day up and lucky me, it ends up being on a day-after shot day.   I'll be so glad to have everything just be settled and calmed down and off of treatment and all these appt.s out of the way that, actually, I think that the 6 mon. wait will probably be a blessing in disguise.  I selfishly, was hoping in the back of my mind that her house would have stayed on the market and I'd make it through my treatment and be done with it and then, be able to help with the move better. But, I had no control over any of it, nor did I have any control over the Riba sides or day after shots sides.  At least my mom will now be living closer to my town and I'll be able to get to her quicker should anything happen.  Previously, when my Dad was sick, my sisters and were having to drive for hours to get to them and it was not easy at any level.  I was very glad that the stress didn't seem to have an effect on my undetecteds.., that's the good news there.  Susan400

[hepcandme]

You are patient woman Susan

I insisted that my doc do 4 week EOT labs. As a general rule, those labs will tell if you have achieved SVR

How sad what you went through with your dad. I, too, have often lamented the fact that my doctor rarely touches me. I think, like, twice - to palpitate my belly. That's twice in the nearly a year that he has been treating me. Unless you count the endoscopy and colonoscopy that is pretty intimate but also fairly impersonal since I was asleep

The notion of laying on of hands has incredible healing power. That's why your mom held you and kissed your boo boos. I don't know why modern doctors don't understand this basic tenet of healing

Hang in there! We are all on your team and wishing you SVR!

[WyoSue]

That's great news! I'm happy for you. I know you've failed treatment several times before, and were understandably anxious about this latest treatment attempt. I'm hoping this one is the magic combo that slays the dragon for you.

My gastro doc wouldn't do a 12-wk post EOT PCR, either, but my primary care doc was happy to order it for me. I also didn't want to wait a whole 6 mos. to see if I had cleared the virus or not. That's a long time to wonder....especially considering that my 61-yr-old brother is now dying of this disease. He has cirrhosis and stage IV liver cancer that has spread to his lungs, stomach, and pancreas.

Although I'm elated to have attained SVR 14, my joy is tempered by what's happening to my beloved brother. It's unspeakably horrible. I hate this virus, and wish everyone who has it could be cured, and the sooner the better.

[Idyllic]

I am so happy for you. I know even though the chances were very good that you would still be UND that you were anxious.

I get your doctor does not do a three month UND since even if you were DET you could not treat again however imo this is not really the issue. Your peace of mind is the issue. Six months is a long time to wonder and worry about whether you cleared the virus or not. I just think you deserve the right to know since you have so much invested in this. I treated with a different protocol than you so in my case a three month PCR would likely have been telling.

Even if it were not I did it for my peace of mind rather than assurance that I was still UND. I had already talked to my PCP about this and she said if my Gastro did not want to run a PCR she probably would.

I ended up having kidney and thyroid problems that were connected to treatment and had to have labs anyway and both doctors were cool about adding a PCR.

I am just throwing all this out there since if it were me (and I admit I can be OC) I would try to find a way to have a 3 month PCR whether it meant anything in the over all scheme of things or not :)

[smittlap]

UNDETECTED AT 30 DAYS S&O AND THE SIDES HAVE IMPROVED BEYOND BELIEF. EVEN MY URINE IS CLEAR.

HOWARD

[truredhead]

Oh that is just great! The 8 week is still UND! So happy for you! I know it is rough with the other things happening, but look it, you are almost to the end and you will rebound quickly I feel. Wonderful news.

[patra_]

Congrats on the UND!!!!  I know it is one step in a staircase, but, oh, what a nice step, especially since it's the second one.  : -). I was less that 15 but still detected at the 3 week Labs (my Dr did 3 wk & 7wk) but was UND @ wk 7!!


We are sooo blessed!  Hang in there.  We will all defeat this dragon!  Then we can do a GREAT BID COMMUNITY Happy Dance to celebrate.  Pat