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  • NVDobie
    NVDobie Member Posts: 184
    edited August 2018

    akmom,

    You made me laugh. :-) Welcome.

    I don’t have MX experience, but do understand the dilemma. One of questions I would ask was whether the reconstruction will impact future treatment in the case of local recurrence. Also can reconstruct still be a option later on if radiation was done post mastectomy.

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  • moth
    moth Member Posts: 4,800
    edited August 2018

    How's everyone doing in this heat? I normally really like warm weather but even I'm finding it a bit much sometimes.

    I finally learned today that I start radiation on Monday. I've also started the process of getting my vaccination records sorted & up to date for school in September.

    Oh & had my biopsy on the right breast yesterday - fingers crossed it was just an overly cautious radiologist. I enjoyed having ice packs down my top all day yesterday. I recommend it in this weather LOL.

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  • marianelizabeth
    marianelizabeth Member Posts: 1,735
    edited August 2018

    I have been following all of your posts including your last one Moth and you have so much on your plate including school. I do want to respond to some posts but with guests airing in an hour for two nights and me still in bed, it will not be right away. It is hot but we are luck where we are in Victoria as we normally have a good breeze. My hot sweats don't care if it is hot or not and often I actually drip on the floor or wherever.

    As for me, I was not sure if I posted my latest but I think not. Sorry it is not good news. Coy/paste here for expediency from another thread and dated last week, Aug. 2. As for me I'm not sure how I feel but I gravitate between fear, anxiety and my usual positive self. I saw my MO yesterday for my monthly visit. Last month she said that she was sending off a message to the Vancouver BCCA regarding my MRI from July 31st last year. She wanted comparison from that MRI to the one done June 20. The head of radiology at the Vancouver BCCA who had followed on my testing last year as well as doing the core biopsy, did that comparison and wrote a report. Bottom line is that progression and much more enhancement extending further and involving neurovascular elements, muscles, pleura with loss of peripheral fat planes whatever that is. There is more but Ibrance has stopped working and today I start Capecitabine (Xeloda). There is no way that I have absorbed this information and I have lots of questions. I did not really see this coming even though the pain has worsened and the breakthroughs more frequent.

    I know many of you have already faced this kind of a jump and so you will know how I feel. Again I'm so happy that we have this group (and the other thread I follow).

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  • DearLife
    DearLife Member Posts: 1,183
    edited August 2018

    Dear MarianElizabeth, I am sorry to hear of your progression and I know you have been battling pain. I hope the Xeloda works for you without many side effects. Your positive spirit will rebound and help you through this. Gentle hugs.

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  • moth
    moth Member Posts: 4,800
    edited August 2018

    Hi marianelizabeth - Well, that really sucks. I'm sorry to hear you're experiencing a progression and having breakthrough pain. I hope your team will find some solutions to improve your comfort & that the xeloda will start working quickly. Glad that at least the ocean breezes are helping with the heat. Enjoy your time with your guests; I hope they lift your spirits and bring you joy.


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  • wrenn
    wrenn Member Posts: 2,707
    edited August 2018

    Moth, I hope the results of the biopsy are benign and that radiation goes smoothly. Hopefully the heat doesn't continue so you don't have to deal with driving etc. It isn't bad in my apt. but I don't like going out when it is this hot. I am impressed that you keep up with your plans for school during all this. I tend to just collapse in a heap with stuff like this.

    Marian, You are so strong and I too hope things improve soon with the pain and that your team find solutions.

    I feel lucky to have come upon so many strong women. Damn. Take care

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited August 2018

    Hugs Mariane. Dang cancer!!!! Phooey. Hope you get good pain drugs that kick in faster than the speed of lightning.

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  • stellamaris
    stellamaris Member Posts: 384
    edited August 2018

    MarianElizabeth, sending you many positive, healing thoughts. So sorry to hear about your progression. I have been away from the board for a while. Finally retired and still figuring it all out. Just a couple of thoughts based on the posts i have just caught up on - my MO is Dr.Chia. Definitely not warm and fuzzy, lol, but i have a hubby for that. reconstruction - had a DIEP - that's the one where you get the tummy tuck - totally happy with the results. 4 week recovery (i am talking 4 weeks back to work and slowly hiking up grouse at age 65). Plastic surgeon was Este Boville. Hands down fantastic surgeon and exceptional human being. Wishing you all the very best.

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  • NVDobie
    NVDobie Member Posts: 184
    edited August 2018

    hi, marianelizabeth

    Hugs and hugs, tough news. I am sure a lot on your mind. Sending you healing thoughts and vibes. We are here for you.


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  • runor
    runor Member Posts: 1,798
    edited August 2018

    Marianelizabeth, I would say you are a warrior, but I hate it when people say that to me. I hate it when they tell me I am strong. Strong? No. If I had a choice, if I thought putting my head in the sand was an option, believe me, I would do it! I would bow out of this life event if I knew how. I did not leap in with both feet, entering the fray with my sword high above my head. No, I was dragged in as I clawed for a grip. I was forced. I was an unwilling participant and the constant threat was that I would give in to despair. Because it would have been perfectly sane to do so. MarianElizabeth, I hope that you find away to kick despair into the corner as you enter this fray. Do with your sword what you will. Pound it into a plowshare or smite the foe. Either way, this battle is not where anyone wants to be. I hope you find your way. Sending you supporting hugs.

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  • wrenn
    wrenn Member Posts: 2,707
    edited August 2018

    I too hate the description of people with cancer as warriors and especially loathe the obits that say "lost courageous battle" but I am going to stand by my view of Marianelizabeth as "strong" and it really isn't just about her cancer. My son trecked in Nepal and he was very strong and everything about her life to me tells me she is a strong woman. I do get how confusing it can be though to hear those trigger words.

    I have never thought of myself as strong but feel stronger just for being a part of this community where we admit our weaknesses and rant about how hard it all is.

    This site doesn't just make me feel strong but lucky. My type of cancer has shitty odds and many with it even with treatment have a recurrence or worse by 5 years. Without treatment I felt kind of doomed but in two days it will be 5 years since I had my tumour removed and I am doing fine (physically).

    I hope everyone is appreciating the grey overcast day. :-) . Need a break from the heat.

    xoxo

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  • janky
    janky Member Posts: 500
    edited August 2018

    Mariane - I am so sorry to hear of this! When we spoke (which I enjoyed so much) I could tell you ere an upbeat, positive person like me (most days). It is so very difficult to have to deal with these issues from every waking moment they swirl around inside us - pain, frustration, hope, death, family, what to do - what to do...I hope and pray this new treatment kicks in quickly and well and that all good things come your way - huge hugs Janice

    Moth - I am hoping your results are positive!

    Stay well and hopeful everyone...

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  • wrenn
    wrenn Member Posts: 2,707
    edited August 2018

    I was listening to this Ted talk and thought of the courage word.

    https://www.ted.com/talks/susan_david_the_gift_and...


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  • Pots
    Pots Member Posts: 186
    edited August 2018

    Hi Marianelizabeth,

    When I heard that I had a second progression...truthfully, I got scared. The leap from NED to “you have and progression" aka now you're metastatic and your life will NEVER be the same was huge and took me six months to process and reconcile. Well the second progression earlier this year left me terrified about my future and the lack of certainty. What I learned sinceis to take each treatment/chemo as it comes, no one knows how the cancer will react to it or how long it will work. Yes I read and research, mainly to be informed and maybe have a sense of control, but no one can give me the answers to what I really want to hear...how long will this work. So be gentle on yourself, put a name to the fear and to the anxiety and then find your positive optimistic self, that’s who you are. Cancer can grind us down, exhaust us but not take our spirit!

    I’m moving to Vancouver at the end of August from Ottawa. Maybe our paths will cross!

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  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited August 2018

    Hi Marian,

    I continue to think of you and hope Madame X is doing her stuff. It's a strong chemo and packs a punch.

    Like Pots, the news of progression hit me harder than I thought and, in reality, I am only now getting back to normal after almost 9 months. I really expected to do well based on my history and my MO's assurances and yet, I was faced with significant progression less than 9 months after my stage 4 diagnosis. That knocked the wind out of my sails for sure.

    Since then, I have spent months being overly jumpy, imagining the worst with every twinge despite the fact that scans say stable. This too has passed. More recently my head is in a better space. I now realize that progression does not mean my imminent demise and not all pain/symptoms are tied to progression. It feels good to be back on an even keel again.

    All this to say, I understand a bit what you are feeling. You are in my thoughts and I sincerely hope that the next treatment beats it back.

    Hugs. Pat.

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  • van2018
    van2018 Member Posts: 18
    edited August 2018

    Hello everyone, first time posting to the forum. I've recently completed round 6 of 8 cycles of chemo. I am scheduled for a MX (skin sparing and possibly nipple sparing) with immediate reconstruction in late Oct (due to multifocal tumors in right breast). I am contemplating BMX because symmetry is important to me long term. I will make a final decision on this after speaking with the RO in late Sept and the recon surgeon in early Oct.

    Does anyone have any experience with Dr. Van Laeken for reconstruction? Or experience with BMX with immediate reconstruction where DIEP (or TRAM) is not an option (@MSJ)?

    The other thing I read when catching up on the history in this forum is that a GP can't turn you away if you are a cancer patient? I don't have a GP. Have just been going to various walk-in clinics over the years. Same when I felt the lump in my breast. Haven't seen the walk-in doctor after he called with the positive diagnosis. Are there things I'm missing out on not having a GP during this time? I actually wouldn't mind finally having a regular GP again.

    Thank you to everyone that takes time to share their wisdom and support on this forum. xxx

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  • moth
    moth Member Posts: 4,800
    edited August 2018

    Hi van2018 - I can't offer info about your surgery questions but another option is a Nurse Practitioner. The Cancer Agency has NPs - no referral required and it's specifically for people who don't have a GP. They are advanced practice nurses, can run tests and prescribe most meds & would continue to look after you for survivorship care.


    http://www.bccancer.bc.ca/our-services/services/pr...


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  • van2018
    van2018 Member Posts: 18
    edited August 2018

    Thank you Moth! That's helpful. I was wondering what you were all talking about when you were talking about nurse practitioners. :)

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  • akmom
    akmom Member Posts: 272
    edited August 2018

    Had my BMX on Aug 14 at Jim Pattison Outpatient Clinic in Surrey. Surgeon now on vacation for three weeks, so he told me to contact either my family doc or Breast Health at Jim Pattison to remove the drains. I am thinking Breast Health - pretty sure they would be more familiar with the procedure than my family doc... any thoughts?

    Did anyone else get sent home on this boob tube type garment with the Velcro closure in front? I don't know how long I am supposed to stay in this thing, wanting to get out of it but am worried the drains will get moved around without it. Can I just tape the tubes to my side and lose the boob tube? Feeling very sticky and uncomfortable but know I am not supposed to shower until the drains come out... blah.

    Otherwise feeling okay, off the pain meds and moving pretty well. Hope everyone can breathe easy in this smoky atmosphere. xo

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  • wrenn
    wrenn Member Posts: 2,707
    edited August 2018

    Akmom. the tubes are stitched to your chest. Mine just flopped around. I would hold the tubing in my teeth when I had a shower (hand held). I would try to keep an eye on them or hold them up if my cat was around. :-)

    They are very easy to remove. I didn't feel them sliding out. The stitch is snipped and they just slide out.

    I'm glad you are feeling well. I was surprised to only need Tylenol the second day and was amazed at the lack of pain.

    This site saved me really as far as what to expect so keep checking in.

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  • akmom
    akmom Member Posts: 272
    edited August 2018

    Oh,thanks so much wrenn- was dreading the drain removal but doesn’t sound too bad at all!

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  • akmom
    akmom Member Posts: 272
    edited August 2018

    Drains out this morning. Feelingso much more human now 😉 Lovely nurse at the Breast Health Clinic at Jim Pattison fixed me up in no time. Whew, such a relief.

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  • marianelizabeth
    marianelizabeth Member Posts: 1,735
    edited August 2018

    akmom, so glad you are one more step along in this journey.

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  • akmom
    akmom Member Posts: 272
    edited August 2018

    {{{ Hugs and thank you, Marian }}}

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  • NVDobie
    NVDobie Member Posts: 184
    edited August 2018

    Hope everyone is doing well on this rainy Wednesday.

    Has anyone use the products from " ATTITUDE"? Canadian company based in Montreal i think. It has consistently come up on top when i search for safe products to use on EWG SKIN DEEP website.

    Took me a while to realize it is a Canadian company, just made a whole bunch of purchase on their website, after ventured around on different sites. Got 25% off once I hit $100. Happy. Loading up from dish detergent to shampoo, lotion, cream, laundry and the whole nine yards.

    Now on to the journey to find good cookware and one piece of lip stick or color for some occasions.

    Would love to hear your suggestions. So far I am looking at Greenpan for cookware, isoi Bulgarian Rose Lip treatment balm for the lip.

    Search and research continue...

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  • Pots
    Pots Member Posts: 186
    edited September 2018

    Furniture was loaded on Wednesday, no date yet on when it arrives in Vancouver. I'm back in Vancouver. And it feels like I have come back home. I'm impressed with the BCCA....within a week of receiving the referral from my MO I had an appointment with the new MO Dr. Simmons. My next chemo was also pre-booked. This certainly has reduced my anxiety about how things will unfold.


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  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited September 2018

    Welcome home! I’m in Victoria but have always felt I had excellent treatment at BCCA. Hope it continues to go well for you.

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  • wrenn
    wrenn Member Posts: 2,707
    edited September 2018

    Welcome back Pots. I have heard good things about Dr. Simmons. Good to see you are feeling good about being back. Hoping for a nice fall

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  • koshka1
    koshka1 Member Posts: 678
    edited September 2018

    it’s been a while since we have had a local get together. Is anyone interested?

    It’s me Kosh aka Leanna


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  • NVDobie
    NVDobie Member Posts: 184
    edited September 2018

    Count me in, Lenanna


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