Secondary diagnosis

Annette joycieAnnette joycie Member Posts: 26
edited September 2016 in Metastatic breast cancer
Hi,

I'm very excited I have found this site, as I can talk to people who have the same health issues I do.

My original diagnosis was on 27th September 2002, one day after my second granddaughter was born. I call her my little guardian angel as it certainly softened the blow to have a new grand baby while dealing with BC.

I had two lumpectomies, auxiliary clearance, radiation and chemotherapy. I also tried to take Tamoxifin but it really made my joints hurt and the menopause symptoms were terrible. Looking back on it now, I wish I had of persevered with the Tamoxifin and I might not be where I am now. Who knows?? It's one thing that I've kicked myself lots over the years for and another is, maybe I should have had a mastectomy back then, but I was going under the guidance of my oncologist and surgeon.

I had five good years then was diagnosed again with BC and it was in 16 glands. After having a mastectomy, chemo that almost killed me twice due to having another infection, another type of chemo, (I'm sorry but I can't remember the names any longer.I think at one point I tried to erase it from my mind and didn't write anything down as it made it too real), I also had 8 months of Herceptin, another 30 rounds of radiation, it was then found to have spread into my bones and lungs. I tried some alternative therapy which didn't help and started back on Hormone therapy. I've been on four different types and my body has become used to them all. My last lot of treatment was Afinitor, and Aromisin. Also I'm now having the injection at my GP which takes the place of the Zometa for bone strengthening. The Afinitor stopped working which resulted in a new bone met in my forearm which I'm starting five rounds of radiation on it from today. I'm also waiting on the results of a CT which I had yesterday on my chest/abdo. I get the results of that Friday. I have everything crossed there are no new mets.

It looks as though I'll be starting the oral chemo, Xeldo. I really enjoy hearing from other ladies, but I have done this backwards. I've been chatting to people but have only just realised I should have done a blog first.

Anyway hopefully it's right now.
Cheers and lot of love from Annette Joycie
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Comments

  • Marls59Marls59 Member Posts: 30
    edited March 2015
    Welcome to a wonderful, friendly place. This online network is the best place to feel that you are listened to by people who truly understand your situation and it's also a great place to have a rant!

    I have early breast cancer but my young sister has secondary breast cancer. We have different types of breast cancer which is quite bizarre! She lives in the U.K and is going through weekly chemo at present and doing well.

    I am so glad I have had my treatment in Australia, we are so well looked after and have access to all the latest drugs and treatments.

    I wish you well with your ongoing treatments Annette and sending you a big hug.

    Marls
  • Marls59Marls59 Member Posts: 30
    edited March 2015
    Welcome to a wonderful, friendly place. This online network is the best place to feel that you are listened to by people who truly understand your situation and it's also a great place to have a rant!

    I have early breast cancer but my young sister has secondary breast cancer. We have different types of breast cancer which is quite bizarre! She lives in the U.K and is going through weekly chemo at present and doing well.

    I am so glad I have had my treatment in Australia, we are so well looked after and have access to all the latest drugs and treatments.

    I wish you well with your ongoing treatments Annette and sending you a big hug.

    Marls
  • Annette joycieAnnette joycie Member Posts: 26
    edited March 2015
    Hi Marls
    Thanks for your welcome. Yes I think I'm addicted to the site already. All the best to you & your sister.
    Cheers Annette
  • Annette joycieAnnette joycie Member Posts: 26
    edited March 2015
    Hi Deanna
    Thanks for your support. I really appreciate it. I hope the tamoxifen continues to work for you. Talk longer soon.
    Cheers Annette
  • Jess_BCNAJess_BCNA BCNAModerator Posts: 476
    edited March 2015

    Hi Annette, Jess from BCNA here - just wanted to jump in to say hello/welcome. As Deanne said, there is no wrong or right way to use the site, and it looks like you are finding your way around just fine : -) if you did need any help with the network just give me a shout ~ jess

  • Christine MarieChristine Marie Member Posts: 180
    edited March 2015
    My heart really goes out to you & you are in the right place,the ladies on here are all lovely & very supportive..
    I was diagnosed with BC 6 weeks after my 1st grandchild was born & she turns one tomorrow..she has been my little inspiration whilst dealing my BC...
    I had 2 stage 1 grade 2 tumours & I had lumpectomy & radiation & now I'm on tamoxifen, I have been on it for about six weeks & really want to come off it because I'm having so many problems!!! the hot flushes are really bad & nausea fatigue & now my feet, I can hardly walk they are that sore first thing in the morning when I get out of bed,, it takes about 10 minutes for them to come good, Iv never had anything wrong my feet before I started taking tamoxifen....
    I'm not sure if I could keep taking tamoxifen, until I read your story, it has made me think twice now......if you don't mind me asking Annette, what sort of problems did you have taking tamoxifen?
    Wishing you well with your treatments & I'm sending you
    big (((hugs))) thank you for sharing your story....
    Take care:)
    Christine:) x
  • Christine MarieChristine Marie Member Posts: 180
    edited March 2015
    Thank you for your reply...Yes Victoria can be very cold I grew up in Mornington.. & now I live in W.A you will love it here, fingers crossed your hubby's doctor lets you both have this trip....that's great news about your scan & that you don't have to do chemo...sounds like you could both do with a good break away in your new van.....
    we have a hard floor camper trailer & we are getting ready to take off for shark bay for school holidays with family :) can't wait......
    I have been trying so hard to tolerate & work through all the side affects of tamoxifen, really hate feeling sick ... I have just recently had a hysterectomy & my gynecologist
    referred to the menopause clinic to see if they can help me..
    So finally I went to that appointment the other day....the doctor there prescribed me with clonidine to help with the hot flushes & she also said it will help with the pain in my feet at the same time, there are a few side affects but she said they should go within a couple of days to a week, so I am going to give it go...fingers crossed :)
    I'm keeping my fingers crossed that you both make it to W.A:) best wishes & take care Annette
    Big warm ((hugs)) back at you:)
    Christine:) x
  • Annette joycieAnnette joycie Member Posts: 26
    edited March 2015
    Great to hear from you. Still waiting to find out if we are going on our hols. Hopefully we will hear tomorrow. I'm quietly getting ready.
    Wayne was telling me we will be going through Shark Bay. We are hoping to get to Broome inland, then come down to Perth via the coast. Wayne's son is having an after wedding party in Perth, as we both decided not to travel to Malaysia for his wedding because of our health situation. So we are very excitied.
    The top temps here have been around 9degs, so we are both desperatly looking for some vit D.
    I'd be very interested to know how you are go with Clonidine.
    One of my biggest things going on in my head is the continuous fight over food. What to eat and what not to eat. I understand a lot of of what and why we shouldn't eat certain things but old habits die hard. I do try but wonder how other people go with the diet thing?
    Hope you're feeling better.
    Cheers for now Annette
  • Annette joycieAnnette joycie Member Posts: 26
    edited March 2015

    Great to hear from you. Still waiting to find out if we are going on our hols. Hopefully we will hear tomorrow. I'm quietly getting ready. Wayne was telling me we will be going through Shark Bay. We are hoping to get to Broome inland, then come down to Perth via the coast. Wayne's son is having an after wedding party in Perth, as we both decided not to travel to Malaysia for his wedding because of our health situation. So we are very excitied. The top temps here have been around 9degs, so we are both desperatly looking for some vit D. I'd be very interested to know how you are go with Clonidine. One of my biggest things going on in my head is the continuous fight over food. What to eat and what not to eat. I understand a lot of of what and why we shouldn't eat certain things but old habits die hard. I do try but wonder how other people go with the diet thing? Hope you're feeling better. Cheers for now Annette

  • TonyaMTonyaM Member Posts: 2,456
    edited March 2015

    Glad you have joined this network and your caravan holiday sounds great. Like you,I haven't had a full night sleep for 11years.I had bc in 2003 and had a lumpectomy,full node clearance then radiation.I started taking Tamoxifen but stopped after about 3 months couldn't stand the side effects.I had 7 years before cancer came back in the same breast.I had a mastectomy and chemo and back on Tamoxifen.My cancer  was still classed as early bc and hadn't spread-am very lucky.That was 4 years ago and I seem to be ok but I sure don't feel confident with every ache and pain.I'm sorry to hear you weren't so lucky and I wish you all the best with radiation to your arm this week.It's sure to do the trick.Big hug, Tonya xx

  • TonyaMTonyaM Member Posts: 2,456
    edited March 2015

    Glad you have joined this network and your caravan holiday sounds great. Like you,I haven't had a full night sleep for 11years.I had bc in 2003 and had a lumpectomy,full node clearance then radiation.I started taking Tamoxifen but stopped after about 3 months couldn't stand the side effects.I had 7 years before cancer came back in the same breast.I had a mastectomy and chemo and back on Tamoxifen.My cancer  was still classed as early bc and hadn't spread-am very lucky.That was 4 years ago and I seem to be ok but I sure don't feel confident with every ache and pain.I'm sorry to hear you weren't so lucky and I wish you all the best with radiation to your arm this week.It's sure to do the trick.Big hug, Tonya xx

  • Christine MarieChristine Marie Member Posts: 180
    edited March 2015

    Sounds like you got your holiday well planned, when you go through shark bay, I hope you get a chance to see some of it & Broome is Awesome, Willy creek & Winjana Gourge is spectacular & is a must see.....your sons party sounds like fun... I really hope you can get the heads up for your holiday..... I have just started clonidine & I am a little bit fuzzy with it the doctor did say it takes a couple of days to settle down, really hoping this works for me... I will let you know when I get back from shark bay how it's gone for me....as goes for the diet thing, it is hard to stay on top of it!!!! I keep telling myself everything in moderation!!! We all have to find a good balance & do everything in our power to survive this terrible disease & that's what keeps me focused, there is a bit of information on nutrition & exercise on this network.... Take care Annette & GOOD LUCK:) 

                                                      Christine:) xox

  • Annette joycieAnnette joycie Member Posts: 26
    edited March 2015
    I'm sitting waiting for my last radiation then taking my daughter & 2 grandies to Maldon. They have a Christmas theme at the moment & everyone is very excited.
    We've been to Broome twice before & have seen Winjana gorge amongst many others. Cape leveque, Gibb river road, horizontal falls, Mitchell plateau etc. absolutely amazing. To be honest we've probably seen more of WA than we've seen of our own state.
    I do remember being on Catapress which is another name for the one you're trying. No good for me, but I wish you all the best with that.
    Cheers Annette xx
  • Christine MarieChristine Marie Member Posts: 180
    edited March 2015
    That's great it's your last radiation, you just have to get that holiday now :):) grandies are so much fun, my little garandaughter had her 1st party last Friday & she has just started walking:) so very cute.....wow you guys have been to some really nice spots over here...we love traveling everywhere.....there is so much to see..we drove over to Victoria 2 years ago to visit my family & we stopped off at some really lovely places,the great ocean rd was awesome.....we are already & packed to leave for shark bay tomorrow morning, I'm so excited I can't sleep:) you take care & I will chat with you when I get back & let you know how I go with the clonidine.......
    Christine:) xox
  • Annette joycieAnnette joycie Member Posts: 26
    edited March 2015
    We got the all clear to go to WA for 2 months. Yippee. Caravan is almost packed & ready to go. We'll deal with whatever situation occurs when we get back. Hopefully the break will do us the world of good.
    Keep up the good work with your BC. It's a b-gg-r of a thing & yes you do think with every ache or pain, "oh no, it's got me there" I'm sure we can all relate to that.
    I finished radiation yesterday. I have some more lymphodema from it but hoping that will subside a bit.
    All good.
    Love & hugs from Annette
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