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Good News? Bad News? Right News?? Wrong News??? Daaang!!!!!

idlehunters
idlehunters Member Posts: 1,787
edited March 2014 in Colorectal Cancer #1
Well... I am just confused on news I got today. As many of you know my CEA was dropping steadily since my Cyberknife and I had a PET/CT a few weeks back to clarify if Cyberknife was successful and if I was NED. St Louis U did the Cyberknife and PET and said area where Cyberknife was performed was clear but on another area they could not conclusively say if what lit up on the PET was nodules....or inflammation/infection. I have a large area in my rt. upper lung and 3 nodules in rt lung and 1 in lower left lung. BUT they weren't SURE what they were. I had an appointment with my Onc the following week. During that appt he told me he had spoke to St. Louis docs about my scan... They had conferred with the cancer board, the rad people and discussed with my onc. They decided this past Tuesday(last week) that they were 98% sure it was ALL radiation pnemonia infection and inflammation. They gave me anti-biotics and said it would clear up..in time. No cancer... I was NED. Great news!

My Onc still wanted me to stay on my maintenance chemo until he seen the actual scan on the disk they mailed me. He had spoke to them in person and received their printout of the scan but until HE seen it he did not want to stop chemo. OK..what was a few more treatments..Got CBC with CEA done and got results yesterday when I was having chemo. My CEA went from 5.3 to 7.1. NOT GOOD. but I was scratching my head going whaat??? CEA always has been a very good indicator for me. I immediately set up a appt with my Onc for today. This was telling me someone was wrong about my scan.

I had taken the PET/CT disk into my Onc yesterday and he reviewed it this morning. Called the Rad Onc at St. Louis and conferred with him again. Then met with me. He told me that they both agreed that the Cyberknife had caused a radiation pnemonia in my rt. upper lung which is why I have had this dry cough. It don't happen to a lot of people but it did get me. St. Louis people all agreed that the scattered spots..nodules..whatever you want to call them.... were also sites of inflammation... ALL these areas appear the same on a PET..all light up..all have a small amount of uptake. My Onc says the increase in CEA could be from the inflammation. BUT..always a BUT...he DOES NOT agree with St. Louis doctors. He thinks the 4 nodules are indeed...without a doubt.... cancerous nodules. So I got one team of doctors who say no...nothing to worry about...and then my Onc..who is "concerned"

My options? 1. One of the nodules is a little over a CM in size and I can get a biopsy done on it. However, last time they tried to biopsy a lung nodule it could not be done. Even after being off AVASTIN almost 6 weeks....I bled uncontrollably and they had to abort with not enough to biopsy. 2. Already took anti-biotics..didn't work. Onc wants me to take steroids for a week.... If I can tell they are doing me good...mainly stopping cough..then take another weeks worth...after that a CT without contrast and repeat CEA..that will give him proof enough that if Nodules have not grown or shrunk..it is indeed infection...CEA going down or holding will also confirm.

Yes...I took option 2 and started the steroids. I was very bummed...even cried... NED to me does not mean anything more than a vacation..... but I was sooooo looking forward to that break. I just wish they had not told me anything till they were sure. But when you are dealing with 2 different teams..you are going to get different opinions...that is, afterall....what I wanted. I just know now not to celebrate anything until all the ducks are in a row.

As my NURSE daughter said.. "Mom, you have known from day 1 that you are stage IV..you also know what that means...you will more likely than not...be fighting the fight....always. It is what it is... and I am thankful I have today...and I will take that. One day at a time...right Kerry???? I am also thankful I have hair...TODAY!!! LOL I am REALLY thankful I see my Naturopath doc for my first visit tomorrow...... That may be my golden key!!

One more thing.... My RBC has been dropping and I am slightly anemic.... Onc said to take pre-natal vitamins...anyone heard of that?????

Thank you for letting me unload all that. So glad to have you all!

Jennie

Comments

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    sorry about your NED being so short
    Hi Jennie,

    I really hope the steroids help.

    I am sure the naturopath will be really helpful , at least informative and interesting.

    would like to know what she recommends.

    the more informed, the beter choics we can make.

    we have the anemia in cmmon, the joy of chemo.

    today is a great day, I hope you enjoy it to the max like I plan too.

    prayers and best wishes,

    Pete
  • Buzzard
    Buzzard Member Posts: 3,043
    Ya know, I think I know you pretty well by now.....
    and I think if I tell ya that its benign you'd most likely tell me that Im full of chit, and if I tell ya I think it may be cancer then you'd most likely tell me that Im full of chit, so instead Im gonna tell ya that I ain't gonna worry about it so you shouldn't either, your daughters right, it is what it is and it ain't gonna change, so why worry about chit we can't do nothing about. Wait and see what it really is first then simply kick its **** and move on, just like we'll do the next time, and the next time, and the next time...now, quit worrying bout chit and have a beer........LMAO......did I say that ?

    Love ya sweetheart.........Buzz
  • idlehunters
    idlehunters Member Posts: 1,787
    Buzzard said:

    Ya know, I think I know you pretty well by now.....
    and I think if I tell ya that its benign you'd most likely tell me that Im full of chit, and if I tell ya I think it may be cancer then you'd most likely tell me that Im full of chit, so instead Im gonna tell ya that I ain't gonna worry about it so you shouldn't either, your daughters right, it is what it is and it ain't gonna change, so why worry about chit we can't do nothing about. Wait and see what it really is first then simply kick its **** and move on, just like we'll do the next time, and the next time, and the next time...now, quit worrying bout chit and have a beer........LMAO......did I say that ?

    Love ya sweetheart.........Buzz

    LOL....Buzz!
    OMG....watch out Chicago!!!! We gonna take that town DOWN!!!!!!!!!

    Luv ya back!!!

    Jen
  • idlehunters
    idlehunters Member Posts: 1,787

    sorry about your NED being so short
    Hi Jennie,

    I really hope the steroids help.

    I am sure the naturopath will be really helpful , at least informative and interesting.

    would like to know what she recommends.

    the more informed, the beter choics we can make.

    we have the anemia in cmmon, the joy of chemo.

    today is a great day, I hope you enjoy it to the max like I plan too.

    prayers and best wishes,

    Pete

    Thanks Pete!!
    You sooo Schweet!!!! .. and cute!


    Jennie
  • AnneCan
    AnneCan Member Posts: 3,673
    Uncertainty
    Jennie,

    Uncertainty is brutal. I know it is tough having two opinions, but it sounds like your onc is being careful with you, which is important 'cause you mean so much to us! I am hoping he is wrong though! Please keep us in the loop.
  • geotina
    geotina Member Posts: 2,111
    Jennie:
    Well that totally sucks. Buzz is right, there is nothing you can do about it. Your daughter is also right, I realized that about George over a year ago so when we get the old "chronic disease" speech, doesn't blow me away, I already figured that out a long time ago. Am I thankful for each hour, day, week, month, you bet I am. Am I thankful George generally feels pretty good and handles chemo as best he can, you bet I am. I'm not ready to let go yet and neither is George but we are realists and know that day is coming, just not today.

    Well I am rambling so just do what you need to do. Hope for the best outcome, strive to achieve it, just do whatever you need to do.

    Take care - Tina
  • Kerry S
    Kerry S Member Posts: 606
    Jennie Darlin,

    When two groups of docs totally agree there is no progress. There must be a perception problem so lets just get it solved. Also you really don’t want to hear what you want to hear, you want to hear the damn truth.

    One last tip. Be nice to those folks that piss you off. It screws with their minds.

    Love Ya
    Kerry (old guy on steroids again)
  • Sundanceh
    Sundanceh Member Posts: 4,392
    Jen
    Well, Jen, if you look at my case, I've got a couple of scenarios that were like yours.

    When we did the DaVinci surgery, the tumors showed good growth and lit up on the PET also - when they pulled them out, those particular ones were benign.

    End of story, right?

    Well, you know where I'm at now. There was another juicy tumor that was hidden behind an organ that was not showing originally. When it did show, it began to double every 2 month until this one was the size or a tangerine 6cm big.

    I always bypass the biopsies, I just don't believe in them, too many mistakes can be made and you can't even necessarily believe what they are telling you.

    I mean, if they say no evidence, do you believe that? Or if they said cancer, would you believe that. You'd always be guessing. Believe me.

    No, the best way right now would be to watch and wait while you do this scan. Use this one as your baseline. Then in about 2 months when they call for it again, have that scan done. The comparisons shoul be readily apparent.

    If you see substantial growth, then one way or the other, benign or malignant, the best course of action would be to remove them. Then they can do a real biopsy and determine if they were cancerous or not.

    Waiting a little longer might just give you the answer you need. Biopsies are so hit and miss, you spend all that money, take the risk of them puncturing the lung, and then you 2nd guess everything.

    Time always is the best indicator in this case....after all it could be infection, but with so many in one lung and another in your left, I kind of lean on the cancer side as well, but of course, I hope that is not....but I'm a realist.

    Can't wait to hear more after you find out.

    -Craig
  • tootsie1
    tootsie1 Member Posts: 5,036
    Oh, dear
    Oh, Jennie.

    I'm so sorry. This uncertainty is hard to take, I'm sure. I pray that you will find out a definite answer, and I pray that the answer is that it is NOT cancer.

    *hugs*
    Gail
  • mommyof2kds
    mommyof2kds Member Posts: 519
    tootsie1 said:

    Oh, dear
    Oh, Jennie.

    I'm so sorry. This uncertainty is hard to take, I'm sure. I pray that you will find out a definite answer, and I pray that the answer is that it is NOT cancer.

    *hugs*
    Gail

    Hi Jennie, what a roller
    Hi Jennie, what a roller coaster of emotions. Praying for good news.. Hang in there... HUGS. Petrina
  • herdizziness
    herdizziness Member Posts: 3,624
    Dear Jennie
    I don't know what to say, so I'm just throwing you a humongous cyber hug!!!!!
    (Oh, and by the way, it'll be all right dear)
    Winter Marie
  • CherylHutch
    CherylHutch Member Posts: 1,375
    Hey Jennie!
    Well, that just sucks! And, as a human being, one can't help but jump all over the place asking questions like "Well, could it be a cancer and if so why didn't we see it before?" "Does this mean it just all of a sudden grew, which is why it wasn't there before?" "Just what does radiation pneumonia look like on a scan... can't they tell pneumonia from cancer?" "Why are the one set of doctor's not thinking along the same lines as my oncologist?" "Which ones are right?"

    And the questions go on and on and on. Unfortunately, your daughter is probably more correct than any doctor that says you are "NED". I actually don't like that term because to me it is so misleading ... especially to the newbies. We all know NED means "No Evidence of Disease" and doesn't mean "I've Been Cured!" (that would be IBC :) Yet, as much as our intellect tells us we no what NED stands for, the part of our brain that wants to protect us, puts us in a state of denial to a certain degree, and we read those three letters as "I haven't been cured but I no longer have disease, therefore I'm going to be fine for another 30 years or so, with the occasional hiccup". Our minds can sometimes play the worst tricks on us... and we will hear/read things the way we want them to be. The problem with that is... when we then do face reality (whatever that is) it hits us twice as hard, sometimes three times as hard because we wanted to believe our version of NED and happy ever after.

    Now, having said that, it does NOT mean everything is doom and gloom. Everyone in the world, whether they have cancer, some other disease, or they have been told they are as healthy as a human being can be with no evidence of anything wrong with them.... every single one of us is Stage IV from birth. Think about it.... as soon as we are born, we are fighting to live because eventually we all are going to die. We all know this. And whether we have a disease or not, the only thing we all can be sure of is none of us know when we are going to die. Someone who is completely healthy with no evidence of anything wrong could die before us... and they had no idea.

    So what has this got to do with the price of eggs? Probably not a darned thing but we all can be thankful for modern medical technology and how they can spot things on scans... some things that are smaller than the human eye could ever spot. And because of that, we can have it treated. So ya, it sucks if one has to go through treatment, be it chemo or radiation... on the other hand, look at all those people out there who don't even know they have a problem, hence they are not getting treated?

    As for your onc's advice about taking pre-natal vitamins because you are slightly anemic... makes total sense to me. When someone is pregnant, they want to make sure they are getting all the vitamins and minerals they can... so their body can support and nourish the growing fetus. So if you are slightly anemic then you want to get all the vitamins and minerals in you that you possibly can to bring your RBC up to where it belongs :)

    Hang in there kiddo! It will all unfold as it's meant to... and when it does, you and your onc will have a plan :) And that plan may be to sit tight and take pre-natal vitamins, or it may be that you have to go on a treatment plan. Either way... you are alive and crazy as ever :) (that's crazy in a good way)

    Cheryl
  • idlehunters
    idlehunters Member Posts: 1,787
    AnneCan said:

    Uncertainty
    Jennie,

    Uncertainty is brutal. I know it is tough having two opinions, but it sounds like your onc is being careful with you, which is important 'cause you mean so much to us! I am hoping he is wrong though! Please keep us in the loop.

    Awe Anne!
    You mean a heck of a lot to me too! Will definately keep ya'll in the loop. Take care

    Jennie
  • idlehunters
    idlehunters Member Posts: 1,787
    geotina said:

    Jennie:
    Well that totally sucks. Buzz is right, there is nothing you can do about it. Your daughter is also right, I realized that about George over a year ago so when we get the old "chronic disease" speech, doesn't blow me away, I already figured that out a long time ago. Am I thankful for each hour, day, week, month, you bet I am. Am I thankful George generally feels pretty good and handles chemo as best he can, you bet I am. I'm not ready to let go yet and neither is George but we are realists and know that day is coming, just not today.

    Well I am rambling so just do what you need to do. Hope for the best outcome, strive to achieve it, just do whatever you need to do.

    Take care - Tina

    Hey Tina...
    Am I thankful for such a good friend like you, you bet I am!!! thanks for the little pep talk. Take care

    Jennie
  • idlehunters
    idlehunters Member Posts: 1,787
    Kerry S said:

    Jennie Darlin,

    When two groups of docs totally agree there is no progress. There must be a perception problem so lets just get it solved. Also you really don’t want to hear what you want to hear, you want to hear the damn truth.

    One last tip. Be nice to those folks that piss you off. It screws with their minds.

    Love Ya
    Kerry (old guy on steroids again)

    ohhhh Kerry
    I can always count on you to put a smile on my face! Thanks for that!

    Love ya back!

    Jennie
  • idlehunters
    idlehunters Member Posts: 1,787
    Sundanceh said:

    Jen
    Well, Jen, if you look at my case, I've got a couple of scenarios that were like yours.

    When we did the DaVinci surgery, the tumors showed good growth and lit up on the PET also - when they pulled them out, those particular ones were benign.

    End of story, right?

    Well, you know where I'm at now. There was another juicy tumor that was hidden behind an organ that was not showing originally. When it did show, it began to double every 2 month until this one was the size or a tangerine 6cm big.

    I always bypass the biopsies, I just don't believe in them, too many mistakes can be made and you can't even necessarily believe what they are telling you.

    I mean, if they say no evidence, do you believe that? Or if they said cancer, would you believe that. You'd always be guessing. Believe me.

    No, the best way right now would be to watch and wait while you do this scan. Use this one as your baseline. Then in about 2 months when they call for it again, have that scan done. The comparisons shoul be readily apparent.

    If you see substantial growth, then one way or the other, benign or malignant, the best course of action would be to remove them. Then they can do a real biopsy and determine if they were cancerous or not.

    Waiting a little longer might just give you the answer you need. Biopsies are so hit and miss, you spend all that money, take the risk of them puncturing the lung, and then you 2nd guess everything.

    Time always is the best indicator in this case....after all it could be infection, but with so many in one lung and another in your left, I kind of lean on the cancer side as well, but of course, I hope that is not....but I'm a realist.

    Can't wait to hear more after you find out.

    -Craig

    My Buddy Craig....
    First of all let me say.... darn good hearing from you!!!! Enjoy football Sunday??? I bet Kim was screamin like crazy with those Steelers winning!!!

    Yes, you have been thru the same scenario as I...unfortunately more than once. I was surprised what you said about biopsies. For some reason I thought you ONLY trusted biopsies. Guess not. I just didn't feel the outcome would benefit me.

    I think too that a comparison scan will be the only sure way. I also agree about the amount of nodules. I even asked both oncs...Is it possible for all that mess to be infection..they both said yes. I just find that hard to believe. I mean..all the way over in the other lung???? They said those "pus pockets can travel anywhere" even to other organs in severe cases..... Ya, ok, go ahead and make me think of more stupid crap!!!

    So.... will just sit back and ride it out.... STAY TUNED CRAIG!!! LOL.... Man, I really miss you guys!!! tell Kim HEY!

    Love ya

    Jennie
  • idlehunters
    idlehunters Member Posts: 1,787
    tootsie1 said:

    Oh, dear
    Oh, Jennie.

    I'm so sorry. This uncertainty is hard to take, I'm sure. I pray that you will find out a definite answer, and I pray that the answer is that it is NOT cancer.

    *hugs*
    Gail

    Hi Gail...
    You are such a nice person. Always so positive about everything. Thank you for that. You take care and I appreciate your prayers!

    Jennie
  • idlehunters
    idlehunters Member Posts: 1,787

    Dear Jennie
    I don't know what to say, so I'm just throwing you a humongous cyber hug!!!!!
    (Oh, and by the way, it'll be all right dear)
    Winter Marie

    Thanks Dizz!
    Appreciate that huge hug...wow!!! I really felt that!!!!

    jennie
  • idlehunters
    idlehunters Member Posts: 1,787

    Hey Jennie!
    Well, that just sucks! And, as a human being, one can't help but jump all over the place asking questions like "Well, could it be a cancer and if so why didn't we see it before?" "Does this mean it just all of a sudden grew, which is why it wasn't there before?" "Just what does radiation pneumonia look like on a scan... can't they tell pneumonia from cancer?" "Why are the one set of doctor's not thinking along the same lines as my oncologist?" "Which ones are right?"

    And the questions go on and on and on. Unfortunately, your daughter is probably more correct than any doctor that says you are "NED". I actually don't like that term because to me it is so misleading ... especially to the newbies. We all know NED means "No Evidence of Disease" and doesn't mean "I've Been Cured!" (that would be IBC :) Yet, as much as our intellect tells us we no what NED stands for, the part of our brain that wants to protect us, puts us in a state of denial to a certain degree, and we read those three letters as "I haven't been cured but I no longer have disease, therefore I'm going to be fine for another 30 years or so, with the occasional hiccup". Our minds can sometimes play the worst tricks on us... and we will hear/read things the way we want them to be. The problem with that is... when we then do face reality (whatever that is) it hits us twice as hard, sometimes three times as hard because we wanted to believe our version of NED and happy ever after.

    Now, having said that, it does NOT mean everything is doom and gloom. Everyone in the world, whether they have cancer, some other disease, or they have been told they are as healthy as a human being can be with no evidence of anything wrong with them.... every single one of us is Stage IV from birth. Think about it.... as soon as we are born, we are fighting to live because eventually we all are going to die. We all know this. And whether we have a disease or not, the only thing we all can be sure of is none of us know when we are going to die. Someone who is completely healthy with no evidence of anything wrong could die before us... and they had no idea.

    So what has this got to do with the price of eggs? Probably not a darned thing but we all can be thankful for modern medical technology and how they can spot things on scans... some things that are smaller than the human eye could ever spot. And because of that, we can have it treated. So ya, it sucks if one has to go through treatment, be it chemo or radiation... on the other hand, look at all those people out there who don't even know they have a problem, hence they are not getting treated?

    As for your onc's advice about taking pre-natal vitamins because you are slightly anemic... makes total sense to me. When someone is pregnant, they want to make sure they are getting all the vitamins and minerals they can... so their body can support and nourish the growing fetus. So if you are slightly anemic then you want to get all the vitamins and minerals in you that you possibly can to bring your RBC up to where it belongs :)

    Hang in there kiddo! It will all unfold as it's meant to... and when it does, you and your onc will have a plan :) And that plan may be to sit tight and take pre-natal vitamins, or it may be that you have to go on a treatment plan. Either way... you are alive and crazy as ever :) (that's crazy in a good way)

    Cheryl

    My CRAZY friend Cheryl!!...
    Boy..if that ain't the pot calling the kettle black!!!! LOL You pretty well nailed a lot of things on the head. I think I asked myself every one of those questions...and more. Ya... I remember the first time I ever heard "NED" .... I thought "man, I can't wait til I can say I am NED"...then it happened...and Ya...I was so excited...until recurrance...then I thought..what the heck is all the hype about NED..so what!!! BUT..there's that BUT again... I now have a different type of passion for NED.... It's kinda like your "lazy" i think you called it tumors???? That's like NED...you still have the disease...but it ain't moving..RIGHT NOW....Thats why I call it vacation. thats what it feels like to me to be able to take a break from chemo and all the BS and live halfway normal again. I think everyone should get to experience NED... Dang...now who's rambling??

    The pre-natal vitamins do make sense.... but they ALWAYS made me poop black...yukky..don't need any more drama there so I am going to speak to my Naturopath doc tomorrow and see what she has to offer there.

    Thanks Cheryl for your great way of putting things. You have been here for me since the start and continue to be here for me. You are a great friend... a great CRAZY friend...LOL

    Love to you my bestie!

    Jen
  • geotina
    geotina Member Posts: 2,111
    Hey Jennie:
    I had to re-read Craig's response a few times and it totally makes sense and some very good guidance there.

    As far as biopsies, remember a few months ago after we received the "sucky scan" news our onc ordered a liver biopsy to see what was going on. At the time he was looking for perhaps a secondary cancer which I guess is not uncommon. Biopsy came back as "all necrotic tissue". Our onc has done well by us and although he was happy with this news just didn't buy it. So, he ordered a second liver biopsy and directed them to exactly where he wanted it taken and yep, that one came back that it was continuing growing CRC mets and not nothing new. Now if the doc was not aggressive and bought the news of the first biopsy and continued George on light maintenance chemo which had stopped working, well, who knows where we would be at.............

    PS - I don't believe in the term NED either, it is a nice thought though, I like vacation better or NEAD, No Evidence of Active Disease.

    Take care - Tina
  • Paula G.
    Paula G. Member Posts: 596
    Just gotta say, Jen it is so
    Just gotta say, Jen it is so up and down. I hope that you will just keep on keeping on. I think of you and everyone on the board everyday. Paula
  • Sonia32
    Sonia32 Member Posts: 1,071
    Hey big sis
    Little sis here. I swear if I could punch cancer in the face I would. I hope the steriods do something, your cea comes down and that be it. But if there is something bad again I know you'll get through it, you are one tough cookie.

    Love and hugs
    Sonia
  • lesvanb
    lesvanb Member Posts: 905
    Hi Jennie
    Just a quick note befor eI head off for my last stereotactic radiation for my 4 lung nodules. Dang is right. I have 2 medical teams as well (and 3 complementary) and am doing radiation because of the opinion of one of the teams. My other medical oncologist (at the larger center) just was looking at chemo).

    Regarding the dry cough and pneumonia, that is a risk with radiation to the lung. My internal medicine/anthroposophical doc has me on a nebulizer (saline and Iscador) once a day and I can tell it helps wit a cough after the txs. Also anemia is the most common side effect with radiation because of the drop in RBC. I've developed a craving for steak-medium rare-, and I hardly ever eat meat and I had this craving last time I did radiation/chemo- eggs, salmon, etc. Also you might consider miso (fermented soybean paste) soup which has a protective quality against radiation (radiation keeps working long after txs have stopped.

    I see my naturopath tomorrow and my acupuncturist Sat. They are very helpful dealing with side effects of these radiation and chemo txs.

    Love you dear. You have a lovely daughter and you have a great attitude. My encouragement is to treasure every moment and keep on keeping on.

    Leslie
  • Lovekitties
    Lovekitties Member Posts: 3,364
    Makes ya dizzy
    My goodness, very confusing and I can certainly understand your being bummed.

    Out of all that I think that your really smart NURSE daughter had the best advice of all.

    Do you have an adverse reaction to the contrast medium used with the CT? Just wondering why no contrast since I thought that is what causes the 'bad spots' to be more easily found.

    Hope the steroids work and that you can take the cough off your worry list.

    Hugs,

    Marie who loves kitties
  • Kathleen808
    Kathleen808 Member Posts: 2,342
    Jennie
    Jennie,

    Geez.. those are a lot of opinions floating around. I think your daughter sounds like a wise young lady. I know the uncertainty of it all is so dam* hard. I 'll be thinking about you and praying that things get settled and that all is well.

    Aloha,
    Kathleen
  • Jennie
    Jennie,

    Geez.. those are a lot of opinions floating around. I think your daughter sounds like a wise young lady. I know the uncertainty of it all is so dam* hard. I 'll be thinking about you and praying that things get settled and that all is well.

    Aloha,
    Kathleen

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