Any other young Manitobans out there??

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  • GracePang
    GracePang Member Posts: 178
    edited February 2010

    Hi Melanie,

    Good to know that your feet are better and wish your scans show the effectiveness of those treatments. I will be busy next week, but the week after would be a good time for me. Wesnesday works fine. Hope Diane feels better now and can join us for a gethering in two weeks.

    Bev, are you in conference this week (is it today?)? How was it? Hope we can meet as well.

    Grace  

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  • DianeKS
    DianeKS Member Posts: 241
    edited February 2010

    Hello everyone,

       Finally feeling better after two weeks of sinus, ear and throat infection.  Burst my ear drum in the process so now I can't hear out of my left ear.  I was in emerg then sent home the next day, then admitted one week later as the infection did not clear up and I still had a fever.  Three nights stay at hotel St.B, and now I am on antibiotics at home.  Slowly the symptoms are getting better, but I'm tired of all this. 

    Probably would not be up to coffee this week, but hopefully soon.Thanks for all your well wishes.

    Diane

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  • GracePang
    GracePang Member Posts: 178
    edited February 2010

    Hello Diane,

    Nice to hear from you and know you are feeling better now! I have had a red/itchy line along with my port line over collarbone that caused worrisome. I posted a thread on Stage IV to get some advice. My onc said we should keep eyes on it without doing anything now, since I don't have fever. I am scared though reading so many terrifying stories about port infection. ... well, we all have this kind of ups an downs. Look forward to our next gethering when you feel up to it.

    Grace

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  • Melanie36
    Melanie36 Member Posts: 110
    edited February 2010

    HI ladies,

    just got home from my MRI...I've had so much pain in my upper stomache/under lung area front and back. the MRI was actually quite painful.

    See Onc on Tuesday...booked Texas for Wednesday...hope it's good news.

    Also booked Disney for March 23-30 better  f*cking be the Happiest Place on Earth Wink

    Next week doesn't work for me either then so how about the week of the 8th?? Maybe the Wed/Thurs. Mar 10/11??

    Let me know,

    Melanie

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  • DianeKS
    DianeKS Member Posts: 241
    edited March 2010

    Hey Melanie,

      Sorry to hear about the pain you are having.  When did all this start?  You did not seem to be in that much discomfort when we met for coffee. Hope they have given you good drugs to deal with it, and I will be thinking of you tomorrw when you get your results.

      Sounds like alot of travelling for you.  How long are you going to Texas for?

      The 8th or 10th are fine with me right now but that may change if they want to resume treatment that week.

      Gentle (((Hugs))),

      Diane.

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  • Beverly11
    Beverly11 Member Posts: 443
    edited March 2010

    Diane - I hope you continue to feel better.  What a crappy road you have been on.  As soon as you start feeling human it seems like you are due for another chemo treatment.  That's one of the things that drove me crazy. 

    Melanie - Glad to hear you have booked a couple of trips.  Awesome to have things to look forward to.  Not sure about what day next week.  It is getting full & I have really been developing a bad habit of cancelling things due to not feeling well or fatigue.  Right now,  the 10th works best for me.

     Bev

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  • Melanie36
    Melanie36 Member Posts: 110
    edited March 2010

    Hey,

    Texas was awesome! ALMOST forgot I had cancer. Then at the wedding...after the father makes a speech for the groom (my cousin) my Aunt goes up and says on behalf of the bride and groom, they wanted to acknowledge a very special guest (me) and that I am going through a very terrible disease and that they wanted everyone to take a moment of silence and prayer for me and to allow all the positive energy to go my way. (Oh yes I was bawling)

    I mean for them to take time out of thier special day to recognize what I am going through...wow I was overwhelmed and touched.

    So...this week might not be so good for me either..I have so much to do. I think I am going to go to MD Anderson for a second opinion. I have to get all the paperwork going...then I have to get my PICC line put in Friday...oh did I mention the results last week were...HORRIBLE. They think the tumor has doubled in size in my lymph nodes and I have stopped Xeloda and they want to start me on Taxotere next week..UUUGGGHHHHH

    This means I will likely lose my hair the second last day @ Disney. Nice.

    Melanie

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  • Beverly11
    Beverly11 Member Posts: 443
    edited March 2010

    Melanie - You have some very special people in your life.  With everything on your plate, I am so glad for you that you were able to make it to the wedding.  And, obviously they were all thrilled to see you there too.  This terrible disease really does let you know who is special in our lives. I pray that taxotere will be the answer for you. 

    Good for you to go to MD Anderson for a 2nd opinion.  We went to the Mayo.  One suggestion is to tape record your consultation with the physician you see.  Are you looking into taking any complimentary medicine  ie naturopath recommendations?

    A lot of people handle taxotere not too badly.  (usually better than FEC from what I am told)  Unfortunately, I wasn't so lucky.  But, I am supposedly in the minority as I was a worse case scenario.  They recommended T3's for joint pain but they didn't help me.  Dr. Nice prescribed oxycocet which although it made me sleepy helped immensely.   I was given steroids before the chemo which gave me a burst of energy so take advantage of the energy when you have it.  I had to taper off the steroids more slowly than they suggested.

    I am sad to hear that you have to lose your hair.  (especially when it is long and so beautiful) I'm not going to lie - it's really really tough.  Some women are really cool about it & do it as a family thing or have their husband give them a mohawk.  I was not one of those cool women!  Be as kind & generous to yourself as you can.  Buy as many hats as you want.  You know that you can borrow from the wig room too.

    Hugs,

    Bev

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  • GracePang
    GracePang Member Posts: 178
    edited March 2010

    Hi Melanie,

    Second opinion is an excellent idea; good for you! Sorry to hear that your scan results were not good, but is it possible that the enlarged lymph node was caused by inflammation? Hope Taxotere will do the job. I am on Taxotere now plus Herceptin. My onc only give me 50% of the max dose, therefore, I have almost no side effects. Ever since he lowered the dose, my hair stopped falling.

    This week is a busy week for me as well and I will get my next chemo this Friday. We may meet some other time. If you have any question about my reactions to Taxotere, you can find me in the chemo room this Friday at HSC after 1pm if you are there for your PICC line; or you can phone me on my cell. By the way, people on this site were talking about Penguin Hat that can help preventing losing hairs. You may want to find out about that.

    Nice to hear that you had a good trip and have another one scheduled. These trips are always helpful to relax our minds.

    Best, 

    Grace 

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  • DianeKS
    DianeKS Member Posts: 241
    edited March 2010

    Hey Melanie,

       Sorry about your news... that sucks about the MRI scan results.   I don't know anything personally about second opinions but have spoken to many pt's who have.  Hopefully it will give you some answers so you can go forward with your treatment and be confident that it is the right one.

      The PICC line is not too bad, and doesn't take too long once they get everything set up.  Taxotere for me has been all about the joint pain about day 3-5.  My dose is about twice Grace's.  Sorry Grace, I asked about my dose but I forgot now what it was( it was definitely over 100) the nurse said that for metastatic disease treatment the dose was different. So if that is the case for you Melanie perhaps you won't lose your hair? everyone is different.  I had a harder time with loosing my hair second time around than first.  The Wig Room is a great resource if you need it. One step at a time.

      Great that you have another trip to look forward to.  Try not to overdo it, watch the sun(chemo can make you more sensitive to the sun), and enjoy the time away.

    Diane.

      

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  • Melanie36
    Melanie36 Member Posts: 110
    edited March 2010

    UUUggghhh.

    have to begin taking my steroids tomorrow...chemo on Monday...please think of me and send good vibes my way around noon.

    Diane, how have you been feeling

    Grace it was nice bumping into you at HSC how did your chemo go

    Thanks Bev-I did go to the Guardian Angel Room, but was quite disappointed, they had nothing remotely close to my hair. Only because it was free did I walk out with a much darker wig-it was the only one that I tried on that looked natural.

    Melanie

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  • Marie45
    Marie45 Member Posts: 31
    edited March 2010

    Melanie, I take my hair seriously.  I have gotten hair from Evelyn's in Lorette, Mario's in Polo Park,  and a place on north Portage Avenue just west of the U of W.  I can't remember the name of the place just now.

    I wasn't happy with my Guardian Angel hair either.  Good quality synthetic is around $300 at Mario's.  My real hair wig from Evelyn's was a lot of money but you can curl it, flat iron it, etc... I got real hair wigs at that place on Portage.  One of them was my favourite for a long time.

    For 2010 I got new hair at Mario's.  Love!

    I was really afraid of throwing up from chemo.  I took the steriods ahead of time as instructed (I have Dr. Pitz too) but I told my nurse that I was afraid I was going to throw up anyway.  She told me, that in addition to the steriods, take the Metoclopramide right when you get home and take the full daily dose for 3 days after chemo.  It worked.  I never threw up from chemo.

    I'm sending good thoughts your way!  I'm Wednesday so I'll miss you Monday.

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  • DianeKS
    DianeKS Member Posts: 241
    edited March 2010

    Hey everyone, welcome Marie,

       I've been feeling ok but not 100% so my treatment was delayed for one week, went ahead with the Herceptin.  Probably will get my 5th cycle on Thursday.  Steroids are a funny thing with me Melanie, I get so energized for two days and then when I stop taking them I become quite tired.  But I get lots done for those two days!  I have an apt. with the radiation oncologist on Wed for the treatment after chemo, not sure what to expect.

      How did the PICC go?  Have you already gone for the second opinion or will that wait till after chemo?

      Definitely Evelyn's is good she has been around for at least 20 yrs.  Your insurance will probably cover it but I would ask first.  Funny thing is I don't like wearing the wig very much anyway, I prefer scarfs and headcovers. I find the wig too itchy and tight.  As soon as I walk in the door and sometimes while I'm driving home in the car the wig comes off.  You can also buy wigs online, but I would have a hard time with not trying them on. The ladies in your group could offer more advice to ordering online and how to go about it.   There is a site on the freebies board about a lovely free scarf when you pay delivery charges they are silk and look pretty I think it is francelux?

      I know this is not what you want to do, but I will be sending positive thoughts for a better response and to you starting to feeling better.  You can do it... one step at a time.

      Diane

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  • Melanie36
    Melanie36 Member Posts: 110
    edited March 2010

    Thanks Diane...welcome MarieSmile it's nice to have new people join. Are you from Manitoba?? Please share your 411 if you like.

    Diane, I canceled the picc line. I'll get it peripherally the first time and then I guess they'll schedule my port in the next few weeks.

    Marie, Do you like Dr.Pitz? I do...and it helps that he is sweet eye candy, lolKiss

    Thanks for the positive thoughts ladies....luv yah,

    Melanie

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  • Marie45
    Marie45 Member Posts: 31
    edited March 2010

    Nice to 'meet' you Diane!

    I remembered the other wig place is called 'Lola's'

    I also forgot to mention to take the steriods with food.  It took about a year of chemo before I realized that if I take the steriod with food (i.e. a bowl of cereal) then I didn't get that 'crazy super energy' thing.  I never ate on chemo day though - maybe some water and in the evening an egg or so - again due to my fear of throwing up.  It all worked.

    Yeah, Dr. Pitz is eye candy which is what disturbed me about him when I first met him (he was assigned, just as your Brandes was assigned).  He sure didn't look like any kind of doctor to me.

    What I really like about him is his demeanor and he tells me honestly if he doesn't know what to do.   I think he has sent my case to a panel of his peers 3 (?) times now.

    Sometimes in my gut I know what we need to do, sometimes he knows what we need to do and sometimes neither of us knows so it goes to panel.

    I am very comfortable with the care I am getting.  I hope you feel the same way to.

    I had a picc line for 11 months then I got my port in.  The picc was fine but it was a pain to deal with in the shower.  A dear friend who was 'in and out of the system fast' (lucky her), sewed me a skin coloured cover for the picc.  At a glance, no one would know I had it.  When Dr. Pitz told me I needed treatment for years, I decided to get a port,  It's okay.

    There is a chance I'll be at CancerCare tomorrow.  (Heart issues).  If I'm there, I'll drop by the treatment room and say Hi. 

    You sound like a 'Trooper'.  I believed Chemo would be okay,  I truly belived it.  I thought I was getting something that kills cancer cells - that is a good thing.  I welcomed it rather than fought against it and it was fine.  Believe it's a good thing for you.

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  • GracePang
    GracePang Member Posts: 178
    edited March 2010

    Hello Everyone, welome Marie,

    Nice to hear from all of you; Diane, good to hear you are feeling fine and I am sure the extra week from chemo will give you full recovery.

    Melanie, it is 11am now and I am sending your thoughts, love and strength. Hope you will deal with Taxotere well. The first dose is harder for some people (including me) and it will get easier for next rounds. I took steroids with food and have been feeling ok, except thoe lost sleeps the night before every chemo. I stopped taking ani-nausia medications after the first chemo, since I found I was drugged too much with those additional ones. I took them the first time I got chemo and I felt horrible. Since the second time, I rejected those anti-nausia mediations and I felt good ever since then. However, we are all different (they worked for Marie) and you may find out what suits you the best. When I received AC 6 years ago, I felt really sick and nausiastic. Taxotere doesn't give me nausia feeling (only occasionally with slight nausia; some numbness of my fingers and toes) and again we are all different and it may as well be due to my low dosage. Hugs......

    Grace 

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  • Melanie36
    Melanie36 Member Posts: 110
    edited March 2010

    Hey Marie (Jennifer, right?),

    Thanks for stopping into the chemo room to find me (Melanie, not Diane unless you visited her, too, lol), that was really nice. My husband thought you had such a great attitude!!

    So far so good. I had a bit of an allergic reaction after the first push, though. A really funky throbbing in my lower back that I had never experienced before. Plus it felt like liquids were swishing around beside it. Anyway, they stopped it immediately and gave me Benadryl, then flushed with saline and began again...much better...but boy does that Benadryl kick in fast!!

    I was pretty sleepy and woozy for the rest of the night, and have still been taking the anti nauseants and T3s for insurance...I might scale back on the anti nauseants as I don't feel nauseated int eh least.

    I feel okay today, tossed and turned a bit last night and work up with that sweaty feeling you get when you have the flu.

    Thanks for your thoughts...I hope I don't crash tomorrow or anything. As long as I'm better for Tuesday...Disney World here we come.

    Melanie

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  • Beverly11
    Beverly11 Member Posts: 443
    edited March 2010

    Hi Marie - Glad you joined us.  Hoping the heart issues have resolved themselves.

    Melanie - Thinking of you.  Hope today has been a good day.  If you are at all up to it, do your packing while you have energy just in case you crash.  The chemo nurse gave me a cheat sheet that I could write down when to take the meds.  I couldn't believe how much I really needed it.  

    There are some really nice chemo nurses at the HSC.  Feel like they are my friends after going there for all of the treatments and pic changes &  now zometa.  Michelle at the front desk is super friendly too.

     You are all in my thoughts and prayers.

    Bev

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  • DianeKS
    DianeKS Member Posts: 241
    edited March 2010

    Good morning,

        Just thought I would give you an update on where I'm at.  On Thursday I finished my 5th of six cycles of Docetaxel...woohoo!  My onc. decided to reduce the dose by 10% (so, Grace... it went from 195mg to 176) to try to reduce some of the side effects that were delaying the treatment schedule.  What a difference!  I have had significant decrease of joint pain and less groggy feelings.  So far so good with temperatures, neupogen starts today(oh joy). Met with the rad /onc and he was very nice.  Once the chemo is done I will be moving on to get 5 weeks of radiation after I have recovered from the chemo. 

      I have been enjoying the sun through my window and the occasional walk, but can hardly wait till the weather gets just a little bit warmer for my liking. Gardening books are at the ready looking for some inspiration.

     Diane

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  • Beverly11
    Beverly11 Member Posts: 443
    edited March 2010

    Glad to hear you are feeling somewhat better Diane.  One more treatment to go.  Rads is not so bad.  (compared to chemo)   And, the weather will be better too. 

    Hoping you have the best trip ever Melanie.

     Bev

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  • GracePang
    GracePang Member Posts: 178
    edited March 2010

    Hi Diane,

    Nice to hear that you feel better now. It is good that your doctor only reduce the dosage by 10% and that makes you feel much better. My onc dropped mine by 25% and I am now taking 86mg only. He takes a diffferent strategy that I can't disagree. On the other hand, I almost feel no side effects that makes my life much easier.

    Melanie, hope you have enjoyed your trip. the weather has been cold here, which makes your trip more enjoyable Smile.

    I have been busy lately for tax claim, car checkups and other things. My next treatment will be next Friday.

    Grace

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  • DianeKS
    DianeKS Member Posts: 241
    edited April 2010

    Hello all,

       Just got back from my sister's cottage for Easter and into the busy-ness of life. Hope you all enjoyed the long weekend, and for those that celebrate 'Happy Easter".

       Hope your trip went well Melanie, not sure when your back but let us know how it went.

       An apt. with Dr. K tomorrow with blood work then Thursday is my last treatment...yahoo!  Hardly believe the last one is here and can't wait to be finished.

      Hope everyone is well.

      Diane.

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  • Beverly11
    Beverly11 Member Posts: 443
    edited April 2010

    Hi Everyone -

    Grace - Glad to hear the side affects are minimal.

    Diane - You are almost at the finish line.  It has been a marathon for you but you are soon to finish.  I will be thinking of you on Thursday and doing a happy dance.  Cheers!

    Melanie - Hope you are having a fantastic amazing trip!!!!

    Bev

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  • Melanie36
    Melanie36 Member Posts: 110
    edited April 2010

    Hey Gals,

    Just wanted to update

    Our trip was really nice. Although I was still kinda sick the first few days (REALLY bad mouth sores-not fun watching everyone eat pizza!!) The last half was much better.

    I am scheduled for my port surgery this Friday morning then chemo @ 1-it's going to be a LONG day.

    We're trying a different approach this time due to the horrible SEs from last time.

    They're putting me on Gabapentin (for nerve pain) and are keeing me on the Metoclopramide (steroid) for a few days after chemo, also to help with the pain...we can only wait and see.

    Dianne, I am so glad to hear about you having your last treatment! Yah!!

    Grace how did chemo go last Friday?

    Bev? you haven't talked about how you are doing lately...

    Marie? Hope you can join our chat sometime soon.

    Speaking of which...are we ready to try and get together again?

    I am hopping I'll ba good by the end of next week or the week after that-any takers?

    Melanie

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  • DianeKS
    DianeKS Member Posts: 241
    edited April 2010

    Hey Melanie and all,

        Glad you were able to enjoy some parts of your trip I think having the last part better would be more tolerable than the first of your trip.

      Mouth sores are not fun!  I had them for the first two cycles until I was put on neupogen for my counts.  Warm water and salt until you taste it is really soothing.  There is only so much soup one can take, but I liked dipping bread into anything.

      That joint pain is the worst!  They should just tell you to start taking anti-inflammatories on day three and be done with it.  I also liked an electric hot pad ( got one from Shoppers that has an auto turn off switch after two hours), but Tylenol #3's were the best. 

      How are you dong with your hair? I assume some of it is coming out by now. You can PM me or give me a call if you want.  Did you get a wig?  Hope the port goes well,  I'm on my last Taxotere and thinking of removing the PICC and if needed get a port for the Herceptin treatments.

      I'm up for a get together anytime after Wed. next week which is the14th.

      Hope all is well with everyone else.

     Diane.

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  • Beverly11
    Beverly11 Member Posts: 443
    edited April 2010

    Hi Everyone - I am so glad to hear from you Melanie.  And, thanks for thinking of me.  I am doing ok.  Working on trying to sleep and still fighting with fatigue.  Gabapentin helped me out quite a bit. 

    I am up for a get together.   Diane & Melanie - Do you want to see how you are both feeling after your chemo treatments?  

    Bev

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  • GracePang
    GracePang Member Posts: 178
    edited April 2010

    Hi Everyone,

    Nice to read all of your posts and yes, I am up to a get-together anytime next week or the week after, except Fridays (blood work next Friday and chemo the Friday after next week).

    Diane, I am so happy for you that you already had your last treatment yesterday. I was at HSC for blood work yesterday and I would have looked for you if I knew you were there.

    Melanie, I am thinking of you right now (Friday, 11:45am) for your smooth port operation. Can't believe they scheduled you for port operation and chemo on the same day. Hope those drugs will help you deal with the side effects. My chemo last Thursday went well, except some worries of my heart the first 2 nights after chemo (felt hard to breathe and heart was beating fast). I am OK now and just realized that I have gained 5lbs lately-:(.

    Bev, hope you can sleep better every night. did you try yoga and meditation to help you sleep?

    Look forward to our next gethering.

    Grace

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  • Beverly11
    Beverly11 Member Posts: 443
    edited April 2010

    Thanks Grace.  I am doing some yoga.  Looking forward to meeting you ladies!

    Bev

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  • Melanie36
    Melanie36 Member Posts: 110
    edited April 2010

    Hi Ladies,

    Port surgery went well. I'm a bit tender and sore but otherwise okay.

    Chemo went well too. The Gapepentin seems to be doing it's job - as today is day 3, the day I crashed with the last round- I'm doing okay. Making sure to keep on top of all the meds. If I continue to feel like this then perhaps Tuesday, Wednesday or Thursday?? What is everyone else's preference. Tuesday would have to be no later than 11:30 or so but Wed./Thurs. could be later.

    Let me know what you think,

    Melanie

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  • Monique42
    Monique42 Member Posts: 105
    edited April 2010

    Hi Melanie,

        I have been Stage 4 for 2 yrs now, living with cancer for 9 yrs.  I live in Wpg and you sound like you are having a hell of a time with your Doc  First so sorry to hear your diagnosis.  2nd get rid of that Quack Dr of yours.  It's your body and you deserve someone that will listen and help you out.  Most people that say he knows his stuff is because they probably don't ask questions. His bedside matters are terrible, and it is is your decision if you want to work or not. I choose to work as it helps me feel normal and be in my de-Nile world....You will experience bone pain from Xolada(I took aromasin) especially around joints. that is a normal thing.  If the pain last more than 2 days than get an x-ray.  I have 2 children 10 and 13.  who have live with this cancer ever since they were young. I had told my kids that cancer was a bad weed.  That when we put this liquid on it  to kill it, it will die, but sometimes that weed will grow back.   Feel free to PM me anytime. I do admit that I don't go on the Canadian board that often or the computer. 

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