Hepatitis Forums
Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: KC on May 25, 2015, 12:28:26 am
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I am starting to think this whole drug is BS! Been on it for 9 weeks felt good the first few and now can hardly get out of bed. REALLY? Keep reading on this site, nothing seems to be as it is said. More drug companies making some HUGE bucks at our expense.....They cannot guarantee a thing.....Hummm BE WARE FOLKS!
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Call your doctor if experiencing extremely sides like you have said for me I had none missed no work etc and found treatment a cake walk esp compared with my prior 3 tx with interferon. Plus having cirrhosis Harvoni is my best chance to be finally cured
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THANKS LYNN....FEELING VERY FRUSTRATED AT THIS POINT.... :(
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Sure understood but really if you are having that much trouble you really need to contact your doctor
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THANKS LYNN....FEELING VERY FRUSTRATED AT THIS POINT.... :(
Sorry to hear you are feeling terrible. I am not feeling great but I can tell you quite reliably that interferon and rib is much worse for some people. I am very fortunate because over the years to get over a failed attempt at clearing this virus I have learned to trust that there are good people out there who are genuine and are trying to rid others of this virus.
I think of it this way if Gilead is not for real then they are in for financial ruin very quickly so it would not be in their interest to fake a pill and then market the thing. It would take a hoax of monumental proportions and would have to include all the medical practitioners, testing labs and governments where it is marketed to pull it off.
I had lingering doubts when I started to feel down a little for the last 7-8 weeks of treatment. I started thinking stupid thoughts like; just maybe the insurance company only had me on a 12 week course of treatment and the rest were a placebo.... and other stupid thoughts like that!
Fortunately I just revisited the logic of what I just stated and realized that I am no where near as badly off as I was when I finished a 48 week course of peg/rib 11 years ago and wound up using a cane for almost a year slowly getting myself back to a state of health that I could go to work again.
Right now I am working again part time and before the 24 weeks of Harvoni I had been completely out of work for almost 6 months slowly feeling like I was run over by a truck and hung over every day, getting physically weaker by the day as my liver deteriorated into F4. Sure the treatment did make me have more tinnitus, it effected my eyesight and blood pressure but by and large I am in much better shape than I was when I took the first pill.
Please see your doctor as Lynn has advised and try to be specific about symptoms if you do not start feeling better very soon.
All the best to all of us who are waiting for the magic sequence of words SRV 4, 8, 12 etc and finally a functional cure judgement from a our doctors!
Eric
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KC - Just 3 weeks ago you were feeling great. This is a dramatic shift, and either it is from the meds or something else. Please see the doc. You'd be shocked how many patients I worked with developed unrelated problems (including me) during treatment, and ignored them far too long (including me).
Stay close to the forums, and feel free to vent here.
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OK - Forget to mention this part too - there seem to be 2 different types of Harvoni experiences (I am oversimplifying this) - those that feel better after awhile, and those that feel worse. For example, read this: http://forums.hepmag.com/index.php?topic=2760.0;topicseen
These experiences need to be reported so it can be added to the patient info, so patients know the whole story BEFORE they start...
KC - if this is med-related, please report it to the FDA or ask your doc to.
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KC, I feel your frustration. My sides were all over the spectrum during my 12 weeks of Tx. I finished my 12 weeks 9 days ago. I'm not feeling great yet by any means. Fact is...Overall I've felt worse from the day I took my 1st pill. I'm just hopeful that it clears this crap from my system and didn't do too much damage in the process. Since finishing I note I'm tired, no.. make that exhausted as heck. Normally I only sleep a few hours a day but now I can knock off 10 hours like it was nothing and supplement that with a nap. I didn't keep a diary so I can't say stuff like "on day 13 I felt like..." I just know what sides I experienced. At least the brain fog has dissipated somewhat. I was so zonked for a while it was just sad. I'd lose my place mid sentence when talking and reading became an exercise in agony as I'd read a paragraph over and over. I knew the words, I just wasn't making the connections between them. Luckily there are good cheap options for online movie watching :-)
Right now I'm in the wait and see mode. In spite of reports of relapses that are coming out, the odds still favor us. Hang in there bro.
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Regardless of the verdict in a few days I am going fishing for the first time since January! I know from the experience of having to use a cane and being in agony with a disk bulging out between L4 and L5 that rowing my pontoon boat on a lake and fly casting does wonders.
Right now after 24 weeks of Harvoni I have good strength and hardly any back issues associated with weakness the way I did after the other treatment.
Fortunately wooden canes float because when I went fishing on Dragon Lake BC with my pontoon boat on a cold day in early spring< EDIT >2004</EDIT> during my first treatment on interferon, I lost the cane when I got into a nice 6 lb chrome bright rainbow trout. The bungee cord that I used to hold it to the frame of my boat popped and it floated away as I netted and released the fish. Fortunately a good friend found the cane later that day with his power boat because when I got off the water I could barely walk but I was happy regardless.
It is very important to keep active any way you can to take your mind off things but at the same way do not ignore serious health issues.
I doubt whether I would have had the courage to go on after 2004 were it not for some good people and my wife making certain I did not fall into a funk when my treatment failed.
Take care and be kind to yourself is the best advice I can give to those who are undergoing treatment and are having a hard time.
.........
As an aside this is me fishing and doing a amateur cinematography. I use a waterproof camera though and lately have completely ditched the TELCOS and cell phones!
This is a little vid that I posted of an average fish and how to not take a fish out of the water when reviving and releasing it using a soft net.
https://www.youtube.com/watch?v=EnDZskzisbc (https://www.youtube.com/watch?v=EnDZskzisbc)
This one taken just last year is of an orphan duckling on a lake outside Kamloops where we fish.
https://www.youtube.com/watch?v=licCvmrVJV4 (https://www.youtube.com/watch?v=licCvmrVJV4)
Eric
<EDIT>It was eleven years ago not 12, the year before that I was working in the far north of BC cooking in a logging camp. Funny how time gets confused with HCV treatments that you want to forget you ever had!</EDIT>
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Eric,
You are a breath of fresh air! Thank you for showing us how to live.
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There are many people experiencing many different sides that have not been made public. I am in receipt of a list through March 19 from the FDA and it is quite an eye opener. I too say BEWARE!!! But really more BE INFORMED...truly informed.... before starting these meds. Respiratory issues as well as heart issues have been reported. I just received a test back that shows I have 20% loss of lung function. I am waiting on heart tests. So for those who are reporting chest pain, irregular heart beat and shortness of breath...PLEASE see your doctor. Those symptoms are nothing to joke about. Damage to heart and lungs are irreversible.
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No sides except from Ribavirin induced anemia which resolved after completing my 24 weeks Harvoni, 15 weeks Ribavirin.
Other than that feel fine and normal. Mowed the lawn, planted a seedling and dumped some bags of rocks on a path in my yard. Not bad for 57 years old woman except my back hurts a bit.
Definately need to get back to the gym and lose some weight.
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If you have any type of fever, then you should absolutely get checked.
I have not had any notable sides on Harvoni, aside from elevated blood pressure and I'm on day 60. Still working, lifting weights, etc. Actually, I feel more energetic than I have in the past 15-20 years.
I'll count myself lucky based on what some other folks have said.
Best wishes.
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KC
Do check in with your medical team as everyone here has advised.
And then get back to us with their assessment because now we know you are suffering and we care and want you to be better. We want you to succeed!
Next remember that you are undetected (the meds are working) and concentrate on the math: you only have two more weeks and 5 days to be done with treatment. Do what ever it takes to stay the course even if that means bed rest.
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As an aside this is me fishing and doing a amateur cinematography. I use a waterproof camera though and lately have completely ditched the TELCOS and cell phones!
This is a little vid that I posted of an average fish and how to not take a fish out of the water when reviving and releasing it using a soft net.
https://www.youtube.com/watch?v=EnDZskzisbc (https://www.youtube.com/watch?v=EnDZskzisbc)
This one taken just last year is of an orphan duckling on a lake outside Kamloops where we fish.
https://www.youtube.com/watch?v=licCvmrVJV4 (https://www.youtube.com/watch?v=licCvmrVJV4)
Eric
Eric,
Thanks for your posts like this. What Lucinda said goes for me too. You don't seem to let HCV or treatment rule your life. I know this is an HCV forum, but it's fun to hear what others are doing to occupy their time and thoughts while on treatment. One of my all time favorite writers is John Gierach. I suspect you have heard of him. Keep up the fishing reports!
Bob
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Hang in there KC! You are so close to the finish line!
My doctor and my pharmacist said it was okay for me to take simethicone (Gas-X) and to take probiotics. I also started eating a banana every day and it seems to have helped with the bad gastro issues that got worse around week 9 for me. I'm not advocating this for everyone else, just sharing what my doctor told me.
Check with your doctor to find out what you can do to safely lessen your symptoms.
Wishing you all the best.
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It is really important to understand that each of our bodies are different. It is also important to remember that the medication we are taking was just approved in Oct of 2014 (I think that's right). Like any new medication on the market they are going to find new side effects now that a very large population is taking the medication. I knew that I was a test rabbit going in, even if the med is FDA approved. There are multiple people on this site alone who are having blood pressure and sleep issues...neither of which is a listed side effect. Because their smaller studies did not find this. WE are the grand scale study. I was willing to take the risk knowing the potential for all of this because I have cirrhosis and failed interferon/ribavirin. and really do not want to die just yet. I have had one headache, some anxiety, some sleep issues, and some heart issues with Harvoni. The Ribavirin they took me off of a month ago is another story (nasty)
Glad I did not have to take Peg Interferon and Ribavirin again because I thought I was going to die or kill myself on that for 5 months. And it took me months to recover from that anemia, depression, destruction of my tooth enamel, and to grow my hair back. The possible side effects of Ribavirin alone are three pages long. Plus what's a killer is I had a friend who breezed through that treatment with nothing but a 6 hr 101 fever once a week (on injection day). I had a friend who just cleared on Sol/ Oly +Riba and that made her really sick.
I am signing this as "It was unpleasant but I am grateful".
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Hello all... I just stumbled upon my old post and read your replies. Thank you all for the support. I had a pretty tough week 9 but I am back on track. Feeling like a million bucks again (like the first few weeks). I have a ton of energy to the point of getting little sleep (so unlike me). I am driving my husband crazy.
I did call my doc and was told all my symptoms were normal. Everyone is different, some do better in the beginning some in the middle and some in the end. I had everything from anxiety, mood swings, diarrhea, aches & pains, nausea, fatigue, brain fog, & hyperactive. All I can say is drink lots of water and drink some more. I really believe it helps.
Five more days and I'm done with the 12 weeks. I don't know what I would have done without this site. You have all been very encouraging enlightening and positive. I hope each and every one of you clear this virus. Please be sure to keep us posted as you get your after TX VL results for the next few months. It will give us all something to hold on to. Thank you & take care....
KC
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KC, Just the thought of interferon/ribavirin gives me PTSD. I remember well. Glad you are feeling better.
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Hey KC, so glad to hear you are feeling better! We are all different. I had an awful time when I treated. Others were able to work. I felt like maybe I wasn't trying hard enough. Now I know we are all different and we all react differently.
Hang in there!!
Dee
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I am 12 weeks EOT and am still having significant Joint and muscle pain. It really isn't helpful to hear that this treatment is far better than Interferon/ribavirin tx.
That's not the point, I just wish I would have known the side effects going into this, as my quality of life is seriously compromised.
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I am 12 weeks EOT and am still having significant Joint and muscle pain. It really isn't helpful to hear that this treatment is far better than Interferon/ribavirin tx.
That's not the point, I just wish I would have known the side effects going into this, as my quality of life is seriously compromised.
How would have knowing about what you are experiencing made the quality of life any better? Would you have chosen not to do the treatment? Fact is, the vast majority of Harvoni recipients have only very minor side effects if any... For the relatively few who are having a tougher time of it, its no fun Im sure.. But, I think the comparo to Interferon is very valid... As bad as youve got it with Harvoni, its nowhere near the same neighborhood as Interferon for the vast majority of patients.
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Probably not had I known the residual effects and the implications for my overall health.
As for the interferon comparison - again, not helpful nor relevant.
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You posted you are F4 in another thread.
The consequences of advanced liver disease cirrhosis are life threatening. The implications on your overall health of not treating when you have cirrhosis could have severe consequences on you health and life. Something to consider
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Oh please...no need to state the obvious. I was asked a question and I answered it. Without you all knowing my other medical problems, suffice it to say I KNOW a liver is necessary, but so are other organs like my HEART!!!!
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Sure didn't mean to offend all I had seen you reference was joint pain. Obviously I did not know you have additional serious health concerns. Of course having additional health problems could make treatment more difficult.
Hopefully your entire care team are working together to help you.
Best to you
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Into my 9th week out of 12 week treatment. first blood test <15 detected. took second blood test on the 4th of june, waiting for results. I see that I am not the only one frustrated by the side effects. 30 minutes after I take the pill I go to sleep for about an hour and most of the time feel better, but as the hours pass I began to feel extremely fatigued, chest pain, trouble breathing and insomnia. I wake up every two to three hours, then can't go back to sleep right away, so watch alot of tv in the wee hours of the morning. do not feel like reading, can't concentrate. Would like to know if anyone has skipped a dosage here and there to allow your body to recover, and whether there have been any consequences from missing a dose.
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Please do NOT skip any doses!
You risk the possibility of the medicine not working and then you will be back treating again with possible resistance issues to the medication. A few people have relapsed taking every dose on time like a clock. This medicine is not 100% guaranteed especially if you mess around with your dose and hepatitis c and liver disease can have serious long term consequences.
I recommend you discuss these problems you are experiencing with your doctor they could be anything not just Harvoni. You doctor may have suggestions to help with symptom relief so you can continue your treatment as prescribed.
You only have 3 weeks to go you can do this!
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I am starting to think this whole drug is BS! Been on it for 9 weeks felt good the first few and now can hardly get out of bed. REALLY? Keep reading on this site, nothing seems to be as it is said. More drug companies making some HUGE bucks at our expense.....They cannot guarantee a thing.....Hummm BE WARE FOLKS!
Your liver enzymes are near normal and viral load is low < 15 What are you complaining about?? ???
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Your liver enzymes are near normal and viral load is low < 15 What are you complaining about?? ???
That's what Im thinking!!! Calling Harvoni BS and strongly implying it's a sham is missing the mark big time, and will have either the intended or unintended effect of misleading people wrestling with the decision of whether to treat or not.
Simply put, Harvoni is BY FAR the most effective HCV treatment to come along, with BY FAR the fewest and least impactful side effects effecting the smallest number of people.
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Into my 9th week out of 12 week treatment. first blood test <15 detected. took second blood test on the 4th of june, waiting for results. I see that I am not the only one frustrated by the side effects. 30 minutes after I take the pill I go to sleep for about an hour and most of the time feel better, but as the hours pass I began to feel extremely fatigued, chest pain, trouble breathing and insomnia. I wake up every two to three hours, then can't go back to sleep right away, so watch alot of tv in the wee hours of the morning. do not feel like reading, can't concentrate. Would like to know if anyone has skipped a dosage here and there to allow your body to recover, and whether there have been any consequences from missing a dose.
Please take our combined experience to help see you through this. I fully understand the confusion, frustration and most of all fear that is generated by Harvoni treatment.
We are not at all stretching it to say that the older treatments were much, much worse! And it is easy for us who have longer experience in dealing with disease to brush off the small side effects of Harvoni.
Yes at first your liver will be amped up and so will your water works, heart. BUT and this is really important, it is really easy to amplify completely out of proportion what the side effects really are.
This is due to the fact that many seem to be experiencing increased blood pressure. But let us be rational about this. If you put strain on your kidneys and renal system in general then you will experience difficulty in passing the toxins created by the sudden release of liver cells that were killed by virus, NOT HARVONI treatment.
This is exactly why it is imperative that we drink more pure water especially early on in the treatment when the liver needs to discharge, rebuild and exchange hepatocytes. Don't forget the liver is the only organ which is self healing and this is exactly what Harvoni does by blocking HCV replication and cause the liver to exchange more waste.
Another way of thinking of Harvoni treatment is that the consumption of a 26er of bourbon in one go will make you fell one heck of lot worse than Harvoni does!
Please do not stop treatment unless your doctor tells you to!
I truly pray for you to get through this phase of Harvoni treatment, it is the most difficult and you need a support network to fall back on so if there is a local liver society office please speak to them and most important of all do not think you are alone in the fear and doubt.
You can and will get through this! We are all pulling for you.
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Please do not diminish the fact that some of us are experiencing horrible side effects post TX. Even if there is a clearing of HepC, when one has a lesser quality of life now, that is not something you can say...oh at least it was better than prior treatments. The damage does happen. There has been reported multiple deaths, cardiac arrest, respiratory failure, blindness, rashes, mouth ulcers, severe joint pain, huge weight loss for no reason, lung damage, vertigo, continued headaches and heart issues just to name a few that have been reported to the FDA who has no responsibility to report out until April 2016 and then they can choose what to disclose, just as they chose not to disclose many of the side effects they were aware of before releasing this drug. Granted problems are experienced supposedly by less than 2% but when you are the 2%, it is a huge issue. Personally, even though I am cleared at 12 weeks post, I wish I had not taken the drug. The liver can regenerate, the lungs and heart do not. I provided the FDA report to Lucinda (moderator) for her information. Sorry to be the negative Nellie, but this is reality.
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If I had it to do all over again, I would have waited a year to see more "after TX" results from others. I have read the FDA report and it's not pretty. I have felt all along that i was a guinea pig with this drug. Now my doctor tells me we won't be sure if it worked for a year of "non detected" results. I also have felt very deceived by the minimal information out in the medical world including my own doctor and his PA. They keep telling me to get off this site but in essence, I have learned more on this site than anywhere.
There are many, many more side effects than they report. I don't understand why that FDA report is not released? I had horrible side effects (that were never on the list from Gilead) for about 10 days that scared the heck out of me. I have been off Harvoni for 5 days and feel good. Hoping it stays that way and I clear but who knows? My AST & ALT both went back up last week at the end of treatment but doc says that is normal? Who knows?
Please note that I did very well for my 12 weeks except for week #9. Overall, I had more energy than I have had for years with insomnia once or twice a week. If I clear this monster without any post damage I will be very happy and I have faith that I will.
Everyone is different and need to form their own opinion. I know a good percentage of people responded well, I did too for all but 10 days. The question is: what happens after treatment? We will see... Just wondering if it added to the damage in other ways. Hope everyone gets rid of this terrible virus and goes on with a healthy, happy life!
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Please do not diminish the fact that some of us are experiencing horrible side effects post TX. Even if there is a clearing of HepC, when one has a lesser quality of life now, that is not something you can say...oh at least it was better than prior treatments. The damage does happen. There has been reported multiple deaths, cardiac arrest, respiratory failure, blindness, rashes, mouth ulcers, severe joint pain, huge weight loss for no reason, lung damage, vertigo, continued headaches and heart issues just to name a few that have been reported to the FDA who has no responsibility to report out until April 2016 and then they can choose what to disclose, just as they chose not to disclose many of the side effects they were aware of before releasing this drug. Granted problems are experienced supposedly by less than 2% but when you are the 2%, it is a huge issue. Personally, even though I am cleared at 12 weeks post, I wish I had not taken the drug. The liver can regenerate, the lungs and heart do not. I provided the FDA report to Lucinda (moderator) for her information. Sorry to be the negative Nellie, but this is reality.
CHep... I agree that if youre one of the 2%, its hard to see the cause of the malaise objectively, and by objectively, I simply mean the general experience that the vast majority of Harvoni patients will find. One of the problems with evaluating most side effect reports on a drug is that the 'data' developed is anecdotal, subjective, not scientific, and definitely not conclusive.. I forget what the percentage is, but when people report sides, there is a not insignificant percentage of these reports that involve conditions not specifically related to the suspected agent. We know that one heart medication has been linked serious adverse reaction when co-administered with Harvoni. But many of the other side effect claims are undocumented and not entirely credible.
Certainly there are people reporting side effects.. But the list you present is long and scary, not at all documented, and all Im suggesting is that when writing about these reports, there needs to be some balance.. Its extremely important that prospective patients not see Harvoni side effects as being even remotely related to the experience that so many had with Interferon. That's my fear, and why Im writing this; to provide balance for prospective patients. They need support too, and some of the posts here have been quite condemnatory. For the vast majority, there's no need to wait for more testing before taking Harvoni.. Harvoni is absolutely ready for prime time, and it behooves all who are eligible for this wonder drug to get on board...
There is risk with everything.. All of life is a series risk vs reward scenarios. In the case of Harvoni, the reward advantage vs the risk for the vast majority is so one-sided, it hardly deserves discussion.
Im sorry for the folks having a tough time with sides. Thank goodness the majority wont find this in their treatment.
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DragonSlayer, You sound like a plant from Gilead, otherwise how could you possibly say what you just did -
"For the vast majority, there's no need to wait for more testing before taking Harvoni.. Harvoni is absolutely ready for prime time, and it behooves all who are eligible for this wonder drug to get on board... "
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Because, CHep, patients that have serious liver fibrosis stand a much larger danger of complications from liver failure than they do from taking Harvoni.. its that simple. They need treatment now.. By all your admonitions, if people decide to listen to you, youre doing the majority of them a tremendous disservice...
A plant from Gilead? Ha, thats a good one. Most here who have followed my posts know them to be data driven, and have found me a valuable resource..
Look, most who have reached SVR with their treatment are happy to have done so.. And that applies to the vast majority of folks who have taken the treatment... I dont know what more there is to say about it.. The data speaks for itself.
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Ok enough. Here is my bottom line. The quality of life with cirrhosis of the liver is much worse than what, if anything Harvoni has done to my quality of life. PERIOD. If you have F4 then the next step is only 6 feet in depth! How easily we forget this fact.
If you have cirrhosis you are a poor candidate for any medication. All drugs rely upon a robust liver and if you have severely compromised liver functions even taking a freakin' aspirin is taboo!
The point is moot. Your liver controls your quality of life, it is the most important organ for your metabolism, digestion, base renal functions and ability to discharge toxins. AND ALL DRUGS ARE TOXINS which rely upon a healthy liver to work correctly.
Gilead is absolutely correct in stating that those whose stage of cirrhosis has already caused kidney failure cannot be reliably treated with Harvoni.
I just wish people would actually take the time to study the most important literature about this drug! And thank heavens Gilead is above being a pill peddling over the counter pharmaco like some of the companies that advertise and peddle pills for every little ache and pain! They are completely open about the drug and hide nothing about what it does and how it works.
http://www.gilead.ca/pdf/ca/harvoni_pm_english.pdf (http://www.gilead.ca/pdf/ca/harvoni_pm_english.pdf)
End of story.
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Well said!! Mugwump & Dragonslayer
Enough already!! I can't afford not to take Harvoni. It is either Harvoni or an early death. SIMPLE
I have not had any side effects worth mentioning. I still feel as crappy as I did before TX and if I did experience any then I would deal with them because I would take some sides over an early death and yes nothing can compare to interferon sides.
I understand that some people are having some side effects and my heart goes out to them but who really knows if EVERYTHING they report is TX related?
How can they be sure that it is a side from the drug or something they would have experienced anyway? Regardless, we are all different and we all react differently to medications.
CHepCFree Stop scaring people!! I am beginning to think this whole thing is for personal gain and that is sooo not cool. What is the next step a lawsuit against Gilead?? (I bet I hit the nail, right on the nose with that)
Anyway enough is enough. People can read up on the side effects and make their own decisions they certainly do not need to be scared away from what might be their only hope
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Just want to say that I feel everyone's opinion is important, no matter what it is. My own personal opinion is that since I made the decision to start on Harvoni two weeks ago, I'm not going to worry. I don't think I'm going to look into the side effects too intensely, unless I actually get some that are unusual for me. I'm going to take the advice about drinking enough water, and just see what happens one day at a time. I really do think the one day at a time strategy fits in this situation, lol. So far on day #9, I'm actually feeling better than I did before I started treatment. It's too hard for me to try and make sense of what could or will happen during and after treatment.
I also think that the stress of worrying about side effects can make a person feel even worse. I'm not saying that people are making up the side effects, or that they aren't real. All I mean by this is that if we are already undergoing treatment, maybe we can find a way to relax more, even if it's just a little more relaxed. And I know it's not easy.
I feel bad for everyone who is suffering, and am hoping that the sick ones will have something positive happen to them to encourage them.
I would also like to say that I have felt horrible the last two years, lol. Now my mind feels better, and the irregular heart beats seemed to have almost completely stopped. Not sure why.
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@ Penniann
Very nicely said. Good luck on your treatment and I am so glad to hear you are already actually feeling better. That is great! :)
I think a positive attitude goes a long way. I too do not wish to focus on bad side effects. What good will that do?
Best of luck with your TX and keep us posted
Deb