Any other young Manitobans out there??

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  • nikola
    nikola Member Posts: 466
    edited July 2010

    Anyone went to Vic for chemo Tx? I just got call from CC that my Tx could be arranged at the Vic since I am living on St. Vital.

  • DianeKS
    DianeKS Member Posts: 241
    edited July 2010

    Hi Nikola,

      Sorry you weren't able to get into the trial, and therefore get the Oncotype done quickly and paid for. It is so difficult to make a decision when you have a lot of options to look at.  Once you have and are comfortable with your decision, you can move onto the next step which is preparing for chemo.  I don't know anyone who has had tx at the Victoria Hospital however I know that the facility is brand new and should be nice surroundings.  I also don't think you have to have a port or PICC for that treatment but the nurses will let you know and look at your veins to assess them.

      As far as wigs go...try the wig room first.  They are free and I got both of mine there.  Both times people thought it was my real hair.  Very friendly and they also have hats to lend as well.  I did not like wearing my wig in the summer but you might like one for the fall. 

      I only had Taxotere x6 cycles without the C but four days after your first treatment should be ok, just be prepared for hip/joint pain from the taxotere.  I used anti-inflammatories and hot pack, occ tylenol #3's. For me that was usually the third or fourth day after chemo.  I'm sure there is a thread about T/C that you can browse as well as someone starting a thread for Aug. chemo.

      Congratulations on making a decision,  move forward, you can do it.  Ask questions and we will try our best to help, also the nurses are a great help as well.  Good luck and let us know how you are doing.

      Diane.

  • DianeKS
    DianeKS Member Posts: 241
    edited July 2010

      Melanie,

       How are you doing?   Hope you are managing well.  Thinking about you, and wondering how your summer is going.

       Diane.

  • nikola
    nikola Member Posts: 466
    edited July 2010

    Hi Diane,

    I asked them about veins and they listed all kinds of things that could go wrong including damage to the surrounding tissue and pain during chemo. So. PICC line for me. since they transferred me to Vic I would probably start chemo sometimes next week.I guess they want me to start before that 12 weeks mark. I am ready to be without hair but not for the weding. If I start chemo next week I could be 9-12 days after chemo.What to expect?

    I thought I read that somebody went to Vic, I was going through all the post again but no luck.

    Thank You

  • DianeKS
    DianeKS Member Posts: 241
    edited July 2010

    I have a PICC and it is not so bad, most time I don't notice it there.  If your new with one you may notice it more.  Depending on your personality/comfort you may want to cover it up.  Three quarter sleeves work best I find, or  a sweater over the shoulders if you have a sleeveless dress.  Otherwise I have not been covering it up these days and am comfortable with that...you will get a few looks at first , but I don't care anymore it is what it is, and it is summer people!

    My hair started falling out after the first cycle about 2 weeks after so you might be alright for that time frame.  You have some time to check out your options...just in case but I'm pretty sure at 9-12 days it would still be there.  Twelve days might be pushing it, but everyone is different.  For me both times I have had chemo it was almost clockwork 14 days.  You could look on the hair, hair, hair thread or some of the other chemo forums from the last few months to see what is common for the T/C protocol. 

    As far as how you will be feeling you probably won't have nausea, but with the C your taste for different foods might have changed.  For me I found that alcohol tasted very different and I tried a few different wines but stuck with carbonated water, virgin caesars  that sort of thing.  You may be a bit tired as well but you could rest up for the wedding.  The last thing I wanted to mention is that chemo caused you to be at risk for infections around day 10-14, depending on the person or protocol they are on.  So, make sure if you are shaking a lot of hands and there are a lot of people that you bring some hand gel sanitizer, or wash your hands frequently to try and prevent getting an infection.  If someone is visibly sick, then don't shake/kiss them/sit next to them.  Better that than getting sick afterwards.

    I know the staff will help you with some of these things related to the specific drugs you are getting.  So, hope everything goes well for you next week.  It really is the unknown of how you are going to respond and how the treatment is done that I was worried about.  That anxiety(?)/feeling got better once the first treatment was done.

    ((gentle hugs))

    Diane.

  • Beverly11
    Beverly11 Member Posts: 443
    edited July 2010

    I had a picc line and it worked very well for me.  My only regret was not keeping it in longer for the zometa infusions.  It was a toss up as you have to get it flushed weekly.  But, in hind site.  I wore a lot of caps in the summer.  Kind of like a baseball cap but longer in the back.    Still use them. 

    Is anyone managing to get some exercise?  There are a lot of good statistics about exercise and cancer.  Even walking 30 minutes a day helps.

    Be Well,

    Bev

  • nikola
    nikola Member Posts: 466
    edited July 2010

    Hello,

    they pushed my chemo up. Had PICC line inserted on Friday and was told then chemo on Monday.Was I supposed to get some inf. about chemo I am getting. Somebody told me no sun, no grapefruit, but I was not told anything. Have to ask them.

    No for sure I am going to the weding with the wig. I picked-up one at CC and going to Evelyn's on Tuesday (hopefully).

    I will be getting T/C.

    K

  • DianeKS
    DianeKS Member Posts: 241
    edited July 2010

    Hey Nikola,

       Hope everything goes well tomorrow.  If you want to look up the medications online, google bccancer and you can get to some drug information on that website.  Otherwise, the nurses will go over all the drugs to be given and their side effects and how they will give them the day you start your first cycle.  Usually they will also give you a copy of the side effects to know what to look for.  Don't expect to get all of them as it can seem a long list at times.  Be informed and aware of what might be a side effect and let your health care providers know about anything unusual.

      No sun is definite, or limit sun exposure is more accurate as your skin will be more sensitive after chemo.  Grapefruit depends on what medication you are getting.  Check with the nurses tomorrow, they can ask a pharmacist if they don't know.

      Hope everything went well with the PICC line insertion and I'm glad you found something at CC in the wig room.

      I will be thinking about you tomorrow, let us know how it goes.  One step at a time, one day at a time.

      Time to get to bed as I have an early apt. tomorrow.  Try to get some rest as well.

      Diane.

  • nikola
    nikola Member Posts: 466
    edited July 2010

    Anybody knows if prescription for the wig could say wig or it has to be written as ful head prosthesis?

    I got prescription for wig (he forgot to sign it so I have to call them anyway). I saw somewhere that it has to be prosthesis.

    Thank You.

  • GracePang
    GracePang Member Posts: 178
    edited July 2010

    Hi Nikola,

    I bought a wig and the prescription is just "wig", not prosthesis. It worked. Your insurance may cover it as well and you may want to find out.

    By the way, I was treated at Vic in 2004, the 1st round of my chemo. Nurses there are angels and they are just wonderful.

    Grace

  • nikola
    nikola Member Posts: 466
    edited July 2010

    Hello,

    GracePang thank You for getting back to me. I knew I saw somebody went at the Vic but when I went over the tread again I could not find it. I ended up having my first Tx at Cancer Care yesterday (they had cancellation) but next three I would have at the Vic.

    Today I am going to Evelyn's to find a wig (if I find her first).

    I calle my insurance and it could say wig, so I am fine.

    My first day after chemo I find to be very irritable, did not sleep well, have 5 pounds more since yesterday (drinking lots of water as told),constipation.

  • GracePang
    GracePang Member Posts: 178
    edited July 2010

    Melanie,

    How are you doing? As you might have read from my other posts that I am not doing great lately, with brain mets. I am doing WBR right now. I am also trying to arrange a trip to Mayo Rochester. Have you visited MD Anderson? Please PM me if you read this message.

    Nicola,

    Hope you feel better soon. The 1st treatment is always hard.

    Grace

  • Beverly11
    Beverly11 Member Posts: 443
    edited July 2010

    Hi Nicola - Hope you are feeling better.  That weight gain was frustrating to me.  I would get sick the night of chemo and weigh myself the next morning and yeah I would be up 5 pounds.  Crazy!!!  It does come off when the chemo is done though. 

  • nikola
    nikola Member Posts: 466
    edited July 2010

    I am feeling today as 10 trucks run over me. Every muscle, joint and bone is painful. But no complaints. I pcked up my wig at Evelyn's and is at hair salon now, getting some highlights. Evelyn was very helpfull and nice. She even donated one of the human hair wigs to me. Lost some weight, now I am back as prechemo. My mouth is sore, too, head is itchy.

    Take care

  • Beverly11
    Beverly11 Member Posts: 443
    edited August 2010

    Just wanted to say hi to everyone.

    Nikola - hope you are feeling better and stronger.

    Melanie & Grace - Thinking of you both and hope things are getting easier for you both.  

    If anyone is interested in joining the Running Room Clinic you still can.  We have only completed 2 weeks.  Laurel & I are both there.  

    Take Care,

    Bev

  • nikola
    nikola Member Posts: 466
    edited August 2010

    Hi,

    I am getting ready for Tx#2 on Wedn. Last weekend instead of going to friend's weeding I was at hospital. I got fever Sat am and after checking my BW they found out my WBC were 0.8 and on top of that they heard heart murmur. Now I am upset. That was first time they actually checked my blood since chemo. Also, they did not notice that before chemo my WBC were low already (3.7, normal being 4-11). I got 3 rounds of IV antibiotics and oral ant. for 7 days.

    I am seeing onc. on Monday (first time at Vic) and planning to ask for echo to check my heart before second chemo. Hopefully I would get one. How often they were checking Your blood, any other tests in between chemo?

  • Monique42
    Monique42 Member Posts: 105
    edited August 2010

    HI Melanie and everyone

        Hope all is well.  How was your brother's wedding?  I been at my trailer at Lilac for the past little while and I have been thinking about you.  Im praying for you.

  • Beverly11
    Beverly11 Member Posts: 443
    edited August 2010

    Hi Everyone - Just poppping in to say hi.  Saying my prayers for all of you. 

  • Monique42
    Monique42 Member Posts: 105
    edited September 2010

    Wow, I'm exhausted,  I had my 3rd blood transfusion yesterday along with chemo(Navy Bean) . -- long day.  I hope I have more energy again soon.  My Hgb: 79.    I really hate this.  When my hgb goes up I really feel like a normal person-  whatever that is anymore..    I hate when people are looking at you as if you are the walking dead.  thinking " wow she survived the summer"   well, that makes me more angry and I put on my makeup, fix up my thin hair(use to be thick), draw my eyebrows as I don't have any(sometimes I draw them angry lookinghahaha- then I get double stares).  All this energy of looking decent makes me stronger.....   SOOO    hold your head up and feel good because we are all warriors against cancer.

  • Beverly11
    Beverly11 Member Posts: 443
    edited September 2010

    So sorry to hear you are having such a tough time Monique.  Thinking of you and keeping you in my prayers.  Wish I could take away your pain.  Cancer is a swear word in my mind.  Often, can't even say the word; just call it the c word! 

     Hugs,

    Bev

  • Monique42
    Monique42 Member Posts: 105
    edited September 2010

    Thanks Bev  I feel a little more energtic the last few days.  I went on Disability just recently and I find it hard to adjust to a homelife. It's ok when the family is home, but now I have more time to think- hate that-.  I had worked full-time through all my treatments since 2001, i guess i have a feel what retirement might be like.  Anyway,  have you hear to see how Melanie is doing. I often come to see if everything is alright with her.

  • nikola
    nikola Member Posts: 466
    edited September 2010

    Hello,

    I just had my last Tx this morning and picck line is out. Waiting for nausea and rest of SE to kick in. I am supposed to take Neupogen shots for seven days as my WBC are constantly down and after first one I ended up in hospital.

    I hope everybody is doing fine.

  • Beverly11
    Beverly11 Member Posts: 443
    edited October 2010

    Congrats on finishing chemo Nikola.  Do you have to have radiation?  Maybe not since you had stage 1 and no pos nodes.  Here's hoping.  If you do though, it is nothing compared to chemo. 

    Monique - Glad to hear you have a bit more energy.  I have not heard anything from Melanie.  

    Thinking of you Melanie.  Post if and when you can/feel like it.

    Diane - How are things with you?

    I saw Laurel and the CIBC Run For The Cure.  She is a barrel of laughs and energy!  Sorry, I didn't recognize you right Laurel away with all your Run  For The Cure gear on!

    Back to work for me on Tuesday.  I am pretty nervous.  Kind of like the 1st day of school but more so.  I shouldn't be as  after what I went through the last 2 years I must remind myself that I can deal with anything.  I ran the 1/2 marathon in Niverville 2 weeks ago. (photos on facebook - Bev Martin)  It was a milestone for me.  Ok, Ok, my brag moment is over!   My husband - Tim is running for city councillor for Charleswood/Tuxedo too.  So, life is busy but good!    Ready or not, here comes life.

    Hugs,

    Bev

  • nikola
    nikola Member Posts: 466
    edited October 2010

    No radiation for me. Now is waiting game, waiting for my ghair to grow and waiting for my appetite to go down. I gained 15 pounds from craving wrong food.

    I am 9 days post last Tx, no energy still. Should I be worried for hair growth after T/C? What should I ask my Dr. when I see him, some screenings, vitamins?

    Thank You

  • Beverly11
    Beverly11 Member Posts: 443
    edited November 2010

    Nikola - Hope you are starting to regain your energy.  Hair growth takes a while.  The hair grows slowly.  You think you are going to have a 1/2 inch hair growth in a few months.  But, keep in mind that the hair grows in cycles, so in other words not every hair is going to pop out of your scap at once. lol.  Takes a while to get a full head.  I am now about 15 months out of chemo.  You can see some photos on facebook.  (Bev Martin)  Probably, the most current is Sept 27th (1/2 marathon) 

    Screenings seem minimal unless you have symptoms.  Dr's don't like to give much nutritional advice either.  If you are up to it you can always go to a naturopath.  I take a whole slew of supplements but that is my own personal choice.  I am no medical expert.

     Thinking of you all.

    Hugs,

    Bev

  • Mybails
    Mybails Member Posts: 29
    edited November 2010

    I hope I am wrong but it appears that we may have lost Melanie.  My thoughts and prayers go out to her family and friends.

  • JustJudi
    JustJudi Member Posts: 198
    edited November 2010

    It,s was very sad to see it in the paper this morning, My deepest sympathy to her family, we will be thinking of you, and will keep them in our prayers. 

  • nikola
    nikola Member Posts: 466
    edited November 2010

    I am so sorry.

  • Beverly11
    Beverly11 Member Posts: 443
    edited November 2010

    This is just the saddest story.  I just cannot make any sense of it.  I am so angry at cancer right now.  I pray for strength for her family.  I have a daughter the same age as Melanie's oldest (19).  I know she was trying to focus on making memories for her family and did a fair bit of travelling while she was well enough.  Disney world in 2009.  I pray in time some of the memories Melanie made with them will ease their pain. 

  • DianeKS
    DianeKS Member Posts: 241
    edited November 2010

    I also was saddened to see that Melanie had died.  It was just over a year that her struggles with breast cancer began.  It does not seem that long ago that we met for coffee.  Her energy was indeed something that you would not forget, and she had a great sense of humour.  I as well hope the the memories she made while travelling with her family will be comforting to them.

    My condolences to her family.

    Diane.

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