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February 2012 Chemo

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  • moonflwr912
    moonflwr912 Member Posts: 5,938
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    Hi FHluv- Yep, saw you on the Jan board.  You can go first- let us know!  LOL.  Fredntan, I agree with FHluv, thanks for stopping by to let us in on the fact we will make it through!  We need that affirmation, for sure. 

  • gonegirl
    gonegirl Member Posts: 1,022
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    So my situation has become Groundhound Day from Hell.

    Yesterday was supposed to be my first day of chemo. The port was placed in me on Wednesday morning, the ultrasound echiocardiogram done right after (apparently the best output reading of a heart this tech has seen is 75 and I'm a 70 - yeah, heart). Testing done, ready to go.

    I get to the chemo facility at 9am and vitals taken. My friend Lisa is with me for this first servicing, so we're then led into the private room where the nurse can go over the details of chemo with me. At that point I'm summoned to the nurse's station for a phone call. It is the nurse practictioner from my oncologist's office. She's telling me we won't be starting chemo today, that they found areas on the bone and liver in the bone scan and CT with contrast done on Tuesday -- they just got the results that morning. She's asking me to drive north to Sibley Hospital to come in an talk with the doctor (the doctor splits her time between Sibley and GWUH). I break into sobs. Sobs, I'm telling you sobs.

    All through this experience I have felt angry, scared, and confused but never hopeless. At this point I felt hopeless. Through my sobs I try and ask questions. "Where are the spots? How big are they?" She tells me she doesn't have the report. What? WTF? She can't give me details but she can tell me this shit has spread.

    She keeps telling me to drive up to Sibley to meet with the doctor, a 30 to 40 minutes drive on freeway that I would do while wildly upset. I refuse. I say I have no one to drive (my friend Lisa can't drive) and I can't be on a freeway in this condition. She tells me there will be more tests. I beg her to get them set up asap, I ask if there is anything I can do to get these tests scheduled. She says no. Wait. It's always waiting. She tells me to go home and the doctor will call me there.

    I go back into the secluded room and sob more and more, nurses and social workers coming in to try and comfort me. In my head I'm splitting up my household and finalizing details. After I calm down enough to walk, Lisa and I head back to my house to await the doctor's call. We wait for several hours.

    The minute my nephew and his wife arrive at my house, having just flown in from Wisconsin (God bless them), the doctor calls. She has a much better approach then her nurse practictioner. She tells me the spots on the bones are on the right back ribs and could be simple degeneration (old lady bones). They'll do a spine MRI to rule cancer out there and she's not so worried about those.

    The mass on the liver she is concerned about. I tell her that I had just had a CT with contrast on my abdomen in September 2011 because they had seen spots on my liver when they'd done an ultrasound for possible gallstones. That test showed these to be benign hemangiomas (old lady liver). Oh, she says, can you get those films so we can compare with the latest scans? If they haven't grown, we're less concerned, but we'll still do an MRI of the liver. I tell her that she can stick me into any machine she wants for testing, I will happily go. The first nephew duty Josh performs is to drive me to pick up films and then drop them off at GWUH radiology. God bless nephew.

    Doctor calls me back today. Masses on liver have changed size and there are more of them. Now it's an ultra sound guided biopsy. I am praying, praying these are just hemangiomas that are getting bigger (benign) and we can go back to just kicking breast cancer.

    So for now I'll be back in the February group because nothing will happen until all these next tests are done.

  • faithhopenluv
    faithhopenluv Member Posts: 154
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    I'm sorry GritGirl - here's to hoping it just an old lady liver, but damn do I feel like I complete s&*#t telling you that!  One day I was really freaking about all the what ifs and a friend told me to write everything down and then split it into what can you do something about today and what is for some other day.  Look at the list for today and focus on that.

  • moonflwr912
    moonflwr912 Member Posts: 5,938
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    Gritgirl, I don't know if it helps. But my SIS in law had brain and bone mets and is doing chemo. She called last week to say she is in remission and pain is gone. So don't panic yet, even if it is the worst case, there is still hope. I will pray that it is just an "OLL" (old lady etc) I too am in hurry up and wait mode as they put me on oral antibiotics, and I don't know when I will get my port.sigh.......

  • rachelvk
    rachelvk Member Posts: 564
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    Hi everyone. Thought I'd join in, as I'll be continuing my chemo through March (started in December). I'm on TACx6 every three weeks. Chemo is a roller coaster, and, to use the over-used cliche, everyone is different. I've been pretty lucky avoiding the nausea and some of the other really debilitating SEs, but I've had my days. My suggestion is that you ask your doctor in advance for everything they can throw at your for SE's - the steroids, anti-nausea drugs (like Aloxi, Emend, Zofran, Compazine), Neulasta to keep your white blood count up (and look into taking Claritin with that because it can counteract the bone pain that some women get), and stool softeners to combat constipation (but keep the Immodium on hand just in case you wind up with diarrhea). And if you do get SEs, keep in constant touch with your MO so they can track them and maybe change your dose, or the rate they give it to you during infusion.

    The other thing a friend suggested, and it seems to be getting popular among the dec and jan groups, is to swig some olive oli two or three times a day and swallow it. My friend's doctor had a theory that it can reduce mouth sores and taste loss. I'm three treatments in and have had no sores and my taste buds have only occasionally mutanied - and they're usually back in the morning. No scientific evidence, but heck, why not? 

    gritgirl - I'm sorry you have all the additional stress of the spots. I hope the biopsy answers some of those questions and your MO can get you going with the best treatment. We'll be with you. 

  • lumpynme
    lumpynme Member Posts: 497
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    hi gals! i've been hanging out on the january boards as well- thought i would be started by then.

    first i have to say to gritgirl that i am saying an old lady prayer for you! i am a gastric bypass patient and my liver tends to be "fatty" due to my weight loss- goodness only knows what else it is doing so far!

    i went to MO last weds and he sent me to surgeon the next day-who sent me back! so tues (1/31) i will see what the plan is-and may or may not have the port put in-somehow the port scares me more than any of the other stuff...i looked at the blog suggested and it made me almost physically sick...so ...another way we are each different-i would prefer a PICC line.a few years ago i donated blood plasa twice a week and my veins were pretty good- we'll see! i need to be drinking more water tho!

    my dx was done in michigan and that surgeon wanted chemo then lumpectomy then rads....the new surgeon concurred with him while the MO's logic was surgery first cuz lumpy is only 2 cm....surgeon wants to shrink as much as possible knowing that he also has to go after the lymph nodes.....

    my dx was more than 6 weeks ago-the new surgeon was good enough to point out - so i need to start doing something--my entire tx were put off by our move last weekend from northern michigan to ohio so i could be with my kids for support.not that i am a glutton for any pain or punishment-just wanna get something going to get rid of this beast! with the lymph nodes involved i am praying it's not spread anywhere else yet.....

    today is my 58th birthday and tomorrow i am expecting some serious family pics-after which i will get my very very long hair cut very very short in anticipation...

    ok- sorry so windy-just wanted to say hi ...i think this will be my home for awhile!

  • moonflwr912
    moonflwr912 Member Posts: 5,938
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    Hello lumpynme, I will be 58 later this year, so we are about the same age. I had a bmx in Dec . I just had a TE removed due to infection and am waiting for the port. My picc is gone and I am glad. I just want to get started too. Take care.

  • dltnhm
    dltnhm Member Posts: 420
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    Oh gritgirl .. honey. I feel for you and cannot even begin to imagine the terror that must have shot through you with that phone call. Sometimes I wonder what the heck some of these nurses and schedulers, etc. care thinking.

    I am thankful for you that your nephew arrived... thankful that the doctor was more compassionate and caring and ready to get those tests scheduled than the nurse practitioner. I am praying for peace for you in the midst of all of this. One thing that I know is that God can take anything that we throw at Him so I am throwing this at Him tonight that it is grossly unfair that in the midst of all of this you had to suffer this terrible horrible awful experience. I am asking the 'why' questions and interceding on your behalf that this does not repeat ever again in your treatment. God is so much bigger than anything and I know He welcomes honesty .... doubts and fears and He is not put off by anger or questions or doubts either.In the midst of all of this I know that He is God and I am not and so I hang on sometimes with just a mustard seed faith.  I know I barely know you but felt like we made a connection recently and wish that I could give you a great big hug and sit with you and just be there. Praying peace and rest for you dear one. Hugs across the miles.   D 

  • Grace-HK
    Grace-HK Member Posts: 10
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    I just had my surgery on Jan 13 and expecting chemotherapy in Feb. I am so scared and worried too...what can I do?

  • mthrdee
    mthrdee Member Posts: 68
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    Hi ladies - I am starting my chemo of tc on Feb 16th and my nerves are all over the place.  Some days I am calm and other days I am scared to death.  

    But here is my story of what happened to me on Friday.  I went to see a 2nd MO for another opinion.  I have already decided that chemo is what I need to do but I wanted to see if there was agreement as to what chemo ":cocktail" I should be prescribed.  well I have to say that this is the first time since I was diagnosed that I was in floods of tears.  I cannot even begin to think what this Dr or her staff was thinking.  this Dr is the Mo that is affiliated with the BS that I used and was highly recommended - I had my lumpectomys on Dec22nd so it has been about 5 weeks between the surgery and this appt.  So I walk into the office and nobody, including the MO has looked at my files.  The oncotype test that was supposes to have been ordered 3 weeks ago was never ordered.  Next the Mo starts talking about the incredibly warm weather that we're having while she is giving me a breast exam.  As she is feeling my right breast she suddenly says""Oh I don't like that"" I almost jumped out of my skin...she laughs and says she was just saying that she doesn't like this type of weather in January....WTF, are you crazy.....I have breast cancer!! Don't say that while you are examing my boobs!!

     Next she mentions that maybe I want to consider having my ovaries removed and then birth control won't be an issue and I also wont have to worry about this breast cancer or ovarian cancer.  HELLO, now you are talking about ovarian cancer...Did I miss something???

    Anyway, rough day....now a rough weekend.  I have these two pains that started since I saw her on Friday.  I am sure they are probably all in  my head but haven't slept since then.  I have decided that I will be using the first MO I met with and I am happy with that decision.  She was very nice, but now this Dr has me worrying about all sorts of stuff so I need to go back and see the other MO and ask more questions.

    Thanks for listening I just needed to vent! 

  • JudyP
    JudyP Member Posts: 35
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    I start my chemo Monday morning.  I'm pretty nervous about the first time.  My oncologist gave me xanax to take before I go.  I know I'll be ok, but still anxious!

    I was diagnosed in Oct., had BMX and tissue expanders in Nov.  My port was put in 10 days ago and I'm ready to start.  Getting TCH (Taxotere,Carboplatin, Herceptin) every 3 weeks for 6 treatments, herceptin for 1 year. 

    Question:  How do I add the "diagnosis" section that shows at the bottom of everyone's posts?

  • rachelvk
    rachelvk Member Posts: 564
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    JudyP - If you go to your home page, you'll see a section for "diagnosis." Just fill in the answers you want to include and then click the box that says you want it to appear on your posts. Good luck. You might want to read up on the Dec and Jan chemo posts for an idea of what to expect. Be prepared to drink a lot - hydration is really, really important, especially the first few days, to get that stuff moving out of your body. Sending you good thoughts as you get started.

    mthrdee - That's so annoying that they didn't get your oncotype done, and I'm sorry that MO drove you nuts like that. Definitely go with your gut when choosing a doctor - sounds like your first one is a good bet for you. Regarding the ovaries - since you're ER+ they often suggest that to prevent a recurrence, but concern about a high ovarian cancer risk would be based mainly on the brca gene test. Did you have that done? 

    The one place I've found this surgery/chemo communication process breaks down is when it comes to reproductive choices. I knew going into my surgery that my ovaries will probably have to go because I'm brca+, but it was put forward as something to be done 'when I was done with them.' No one started talking to me about the effects chemo would have until I was scheduled to start, and by then, I would have had one shot at saving my eggs before my treatment. Because of other issues that cropped up, I had to skip that, which pretty much devastated me (I'll be 45 before I'd be allowed to get pregnant, if my ovaries don't give out during chemo on their own). Before my dx, I had just started to accept the idea that I probably would never have kids of my own, but it was hard to accept it as a done deal. 

  • faithhopenluv
    faithhopenluv Member Posts: 154
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    Mthrdee - if you in your early 40s you might consider a BRAC test and it's possible that's what the weatherman/MO was eluding. If you are BRAC positive there is a high risk of breast cancer reoccurrence and ovarian cancer. I am BRAC2 positive, I didnt expect it at all but it has changed my plan.



    JudyP - if you go to 'my home', there is an edit diagnosis link and it will step you through it.



    For me - I have my port installed 2/1 and start chemo 2/2. I got my hair cut short yesterday, would you believe I love it??? Someone on another thread said that hair loss will give us courage to try things we wouldn't before....I'm hoping this stcks after treatment and I always know it's just hair, it will grow back and why not play a bit.

  • ali68
    ali68 Member Posts: 644
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    Started first chemo on jan 13 th 2012 same day as my middle daughter's 16th birthday. Got to hospital at 10am left at 11.30pm chemo was not nice as they couldn't find a vein after taking it out after 30mins saying it would not do. They had trouble finding another vein because I was so cold from having the cooling cap on. Next chemo is 3rd feb so I will make sure they have a good vein before I put on cooling cap. Going with my wheat bags for neck and shoulders and one for my arm. Also taking a blanket because having chemo can make you cold and if you have cooling cap you are frozen.

  • Mom2JJ
    Mom2JJ Member Posts: 38
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    I'm joining the group as well. I am having my first chemo on February 2nd -- Groundhog day. Taxotere/cytoxin (TC) x4 3 weeks apart plus neulasta 1 day after each treatment. I thought Neulasta would be great -- but I now understand some potential side effects. I'm definitely getting the Claritin and Tylenol. Port will be placed on February 1st. I thought the port would be good because I have only one available arm and my veins are small -- but some of the port stories have me concerned about that. I am also very concerned about the potential nausea with chemo. I have a terrible time with antibiotics and have always had a sensitive digestive tract. I also haven't been able to exercise (post-BMX -- just had last drain removed) but hope to exercise at least once before chemo. I don't want my body to fall apart. Before this started in late November, I was riding horses several times a week, working out with a personal trainer twice a week, and on the elliptical at least twice a week. For six weeks -- no exercise. I really want to hit the gym.



    I'll log in post-port/chemo with a report. Everyone hang in there.

  • ali68
    ali68 Member Posts: 644
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    Hi mom2JJ, you sound so fit you put me to shame. All I can do is hill walking and ten mins every morning well done. I see you go horse riding, my youngest daughter is13yrs old and is mad on horses so I see lots but only watch and drop off. I'm not sure how it will go with me on the 3rd I might have to have a line in next time if it doesn't go well again. I think you will be fine with chemo because you seem very active, I didn't get any sickness because the tablets they give you are fab. I made myself active even in the house and drank gallons of water. I did have problems with sinus so I took sinutab which was great.

  • Neli
    Neli Member Posts: 1
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    I am so scared that instead of staring chemo next week I decided to go back to work for a week.

    I had surgery (mastectomy; clear margins) on Dec. 20th. When I met with MO last Thursday and we talked about chemo I had nausea, was light headed and all I wanted was to run away from his office as fast as I could.

    So we had to postpone.

  • Myleftboob
    Myleftboob Member Posts: 983
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    Hi Ladies

    Count me in as another that's going to start mid Feburay.  Don't have the exact date yet but I have had the heart scan, bone scan and IV port placement.  Have a wig appointment for next week.  The cocktail is Taxotere/Procytox every 3 weeks X 4 and Herceptin X 12.  Scared sh*&*less but in talking to alot of women here, its doable.  It bloody better be!!  Thank God for this place is all I can say!

  • Myleftboob
    Myleftboob Member Posts: 983
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    To the ladies anxious about the port.  It was fine really. They freeze the area locally and give you light sedation so you really don't care LOL!!  Was a little tender that night but nothing Tylenal won't cure.  I've had it in for 4 days now and my only real complaint is that it was itchy.  I just kind of scratched around it.  Oh yes and no shower for 5 days, hate that.

  • Gayle56
    Gayle56 Member Posts: 111
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    Mom2JJ   Did your dr. tell you your veins were not any good?  I am having the same treatment as you and a port was never even an issue since it is only 4 infusions.  They actually did the first infusion in my hand with no problems.  Good luck with everything.  I go back for infusion #2 on the 7th.

    Gayle

  • Hildy910
    Hildy910 Member Posts: 227
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    Hi Everybody, 
     
    Well, I've been reading for a while and finally decided to sign up.
    I actually start chemo tomorrow, which although technically January feels as though I'll have more in common with the February group.  So I hope I can stay!
    Having 4 AC, 4 T.  I'm dreading it on the one hand and thinking  "oh heck, let's get this started so it'll be finished" on the other hand.  
  • mthrdee
    mthrdee Member Posts: 68
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    Hi ladies, I actually did the Brac test and it came back Brac1 - and Brac 2 , unknown variant.  Since the surgeons and the MOs consider this a negative I am going to move forward as if this is not something I should dwell on.  you are absolutely right.....it is really important to develop a relationship with the MO as it will be a long term relationship.  I like the first MO and that is who I am going to go with.  This is a tough disease, for every answer you get or when youa re finally comfortable with a decision.....bang, something pops up and makes you start thinking again.  

    While I don't have the oncotype results, it does seem that both MO that I met with feel that due to my age, the fact that I had the lumpectomys and also the cancer in the right breast is more aggressive I should go with the chemo.  While the chemo scares me, not doing it and possibly regretting it later is more frightening.  So bring on the chemo and all I can do is hope that the SE are minimal.  

    It will be nice to have all of you to bounce my thoughts off and also to cry and whine when I need to.  

  • ali68
    ali68 Member Posts: 644
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    Hi everyone, I know it's too late for ladies who have started chemo. If you haven't, have you thought of keeping your hair with cold cap. I have used the same in England and it works. If your interested go to the thread cold cap users on here or ask me.



    You don't have to lose your hair if you don't want too.



    Xx

  • jennywong88
    jennywong88 Member Posts: 2
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    Hi Gritgirl & Grace,

    I had the same feeling as what you had gone through. I understand it. Many times I woke in the middle of the night for fear of tommorow. In this period, I learnt one powerful tool is to do meditation. I will imagine myself breathing in the blessing and breathing out the fear and concious. It helps so much. I will do the breathing technique for all occasions especially when I feel being threatened. I just did my 1st chemo today and it was hard during the first 15 min and then I moved on to the breathing technique. After then, I feel very peaceful. No doubt it was a bit tired but like many people mentioned to take each step/chemo as its time. Don't rush, it will helps. 

    To add a little here, the nurse gave some tips which I'm following and hopes it helps. Drink coconut water after chemo, drink a lot of barley water (w/out sugar), don't be too strict on your diet (during chemo but after chemo, yes you can) and to improve blood count eat pigeon egg (white egg). She mentioned many who had followed her tips went thorugh smoothly. Finger crossed.

  • ckk
    ckk Member Posts: 79
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    Hi Ladies! I am in the December group, and have TC #3 this week. I am using PCC cold caps and have kept all of my hair. I recommend them highly. Rachel gives some great suggestions, and I would add that you be good to yourself the first week after treatment, and don't expect too much. Let family and friends to the cooking, and if you can, get someone to clean the house/apartment. I am chief cook and bottle washer around here, and I cook ahead and freeze the week before treatments. Take your meds, and report every SE to your MO - they are there to help you and there's NO reason to suffer.

    Good luck to all of you, and PM me if you have questions about the cold caps!

  • faithhopenluv
    faithhopenluv Member Posts: 154
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    Neli - I had the same reaction when I got my biopsy results. I was too shocked to cry, but the ...maybe this will be better if I just passed out defense kicked in and I had lay down for awhile. This won't be easy, but it is short term and it is doable. You have friends here! Hope today is a better day.



    Hildy910 - good luck today! Let's get Feb started, the sooner we start the sooner we are done.

  • fredntan
    fredntan Member Posts: 237
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    Hi everyone,

    Im from the oct group



    Just wanted to add one tip that I wish I'd done long time ago



    Probiotic- omg what a difference it has made. I had been trying miralax



    But I've only got five more weeks it really hasn't been that bad. I drink lots of water. Always have jug near me. Never had N&V. A couple of times I thought I might have had it.so I'd take a nausea pill.

    I was terrified before chemotherapy started. I was a mess. Don't let your mind freak you out.

  • JudyP
    JudyP Member Posts: 35
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    Rachevk, thanks for the help on the diagnosis at bottom of post!

    OK,  I had my first treatment today.  I took the xanax 1/2 hour before arriving and felt very calm.  Everything went very smoothly.  The nurse was wonderful!  I have a port in my upper left chest area,  She cleaned the skin and inserted the needle..I hardly felt anything( I stick myself harder when sewing!).  First she drew blood from the port to test my blood counts(all good) then given fluids and then a Benadryl and 2 tylenol.  Anti-nausea drugs were in the fluids.  Then I was given the Taxotere.  When that was done, Carboplatin, then Herceptin.  Fluids were also given throughout.  All smooth sailing and no pain or discomfort.  I did get up to pee 4 times as I was also drinking water throughout.  I was able to wheel my IV stand to the bathroom myself so I did not need to bother the nurse. 

    Thanks to the wonderful posters that listed what to pack in a "chemo bag"  I had lotion, tissues, reading, craisins, carrot sticks, almonds, and crackers and a soft cooler with water bottles.  I didn't eat all of the snacks that I brought, but it was nice to have them.  I also brought my wonderful husband who went out on the street and brought back a nice lunch of chicken meatballs and mushroom soup.  (I packed him a bag of those bite-size Almond Joy candies that are his favorite).

    It went so much better that I thought..what a relief.  We'll see what the next weeks will bring, but I'm in it now!  Only 5 more treatments to go!

    Judy

     PS.  If you are very nervous about your first treatment, ask your oncologist if it is safe for you to take something before going.  I was afraid that I would start shaking or crying which I did do before my surgery.  I am in no way pushing drugs to anyone, but the xanax made me feel calm but not wacked out.

  • mthrdee
    mthrdee Member Posts: 68
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    Judy P - I just realized we live in the same town.  Send me a PM if you would like to get together sometime.  We can trade chemo and wig stories.  I have a feeling that at sometime in the future we will need to laugh!!

    So glad that it went well for you today.  I have my first treatment on Feb 22nd and am a little nervous but I will try to stay positive.  I am working on getting my "chemo bag" together.  My aunt is from Ireland and over there the Irish Cancer Society had a desgner make  this really cute tote bag that says "Fight like a Girl" and she got it for me.  I will be putting it all together and the best part is.....its not pink!! LOL

  • Grace-HK
    Grace-HK Member Posts: 10
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    Thanks jennywong88. I will continue to stay positive and will get thru it ASAP.



    By looking at your last name, are you coming from Hong kong where I live?



    A big hug to all of you and sending you energy to have speedy recovery!