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Comments

  • She
    She Member Posts: 131
    edited September 2014

    oh noes!  I'm in town until Nov 14th 

  • Ossa
    Ossa Member Posts: 685
    edited September 2014

    Tazzy sorry you have to go through this .... My pain is in three areas. What feels like bonepain is in my upper pelvis, Then around where liver is I feel like I am swollen inside (if that makes sense) and my shoulder.. The shoulder gave me issues before all this, but it is deff. worse now. guess the muscle has tightened up and is pulling at all three areas. (make sense I guess)

    She too bad you can't stay for the 22..

    Ps office called yesterday with a revision date. Had to turn them down as we have a big audit at work in Oct and I need to prepare for it =( Surgery date was Sept.30, hope I don't have to wait to long for a new date) Take care all, look forward to Nov 22

  • Tazzy
    Tazzy Member Posts: 1,442
    edited September 2014


    All pain makes sense these days Ossa !!   I was pretty amazed when my physio explained how that one muscle under my arm can cause all the other connecting muscles to tighten.   I think we should all see a PT once a year to work out our kinks and bad posture we have picked up.

    Enjoy your GTG and hope to see some pics.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited September 2014

    I know that Koshka1 put out the message that we are having a second get-together potluck in Vancouver at my place Nov. 22 but just in case you missed it here is a reminder. I have an email list of those who came last time and those who we will get to meet and plan to send that out before I leave for Nepal next week. Please PM me if you have not done so already so we can have some back and forth re car pooling etc.

  • koshka1
    koshka1 Member Posts: 93
    edited October 2014

    Just a reminder!!!!! 

    Hi all! We are planning another BC get together in Vancouver at Marian's house.

    Saturday November 22nd.

    Please post if you are interested.

    Details to follow!!!

    Yay!!!!!!!

    Kosh 

  • Sneakychiquita
    Sneakychiquita Member Posts: 110
    edited October 2014

    I plan on coming to the get together.

  • Kathy044
    Kathy044 Member Posts: 94
    edited October 2014

    I hope to be able to make it too.

    For those listening on the news and worried about the blizzard in Nepal and the deaths of Trekkers from Quebec I checked Marian's itinerary on the travel webpage linked on her blog and the route her group was going to be taking is at a lower elevation then that mentioned on the news so snow and avelanches shouldn't have been a  danger. I was concerned.

    Kathy

  • Sneakychiquita
    Sneakychiquita Member Posts: 110
    edited October 2014

    Thanks for letting us know about Marian's itinerary, Kathy. I've been worried all morning as well.

  • CdnChick
    CdnChick Member Posts: 40
    edited October 2014

    So relieved to know that Marian wasn't near the avalanche site!

    Hope everyone is doing well.  I'm planning on going to the get together as well.

  • Gardengirl66
    Gardengirl66 Member Posts: 44
    edited October 2014

    thanks for posting about Marian, and where she might be,she has been in my thoughts.  I hope to attend the gathering ,looking forward to it. 

    Thanks again, hope everyone is doing well.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited October 2014

    Thanks for thinking of me. No one knew really that the cyclone days before in India would cause such destruction across India and then Nepal. We still had two days of trekking when the storm hit us Wed. night but for us it was wind and torrential rain and a very wet trek Tuesday. 

    My boots which never leak were soaked through and the biggest excitement wer the many leeches that came out to greet us in the rain. We did not hear about the bigger problems higher up until we arrived in Pokhara after our trek ended Wednesday. Not just foreigners but many Nepalis have lost their lives and this is apparently the worst such storm in many years. I am finding the news sketchy but that is no doubt due to the difficult communications as rescues continue. 

    Again, I understand how blessed I am. I managed to hike up to Annapurna Base Camp yet again and actually felt good doing it. I had one odd heart rate issue the day we went up to ABC, actually two. My HR went above 200 for about 10 minutes on the way up then when I was feeling great coming down it did it again but this time it took about 40 minutes to resolve and literally fell 100 bpm in a second. Weird but nothing untoward since and now enjoying elephants and rhinos and beautiful bird before we return to Kathmandu tomorrow. I look forward to seeing many of you in November. I arrive back in Vancouver October 24. Big hugs, Marian

  • Gardengirl66
    Gardengirl66 Member Posts: 44
    edited October 2014

    Marianelizabeth, so happy to hear everything is going well for you (heart thing a little weird) , glad you were not involved in the avalanche, very sad news for all the families involved around the world.  I look forward to meeting you in November and hearing about your adventures. 

  • Ossa
    Ossa Member Posts: 685
    edited October 2014

    Hi Wrenn
    welcome here, sorry you have to be here, but glad you found us.  We are having a get together Nov 22 at Marianelizabeth's (in Vancouver) you are welcome to join us

  • MarieK
    MarieK Member Posts: 467
    edited October 2014

    Hi All!

    I plan on going to the get together - thanks for all the reminders and thanks to Marian for hosting again!

    Marian - So glad to read that you are ok after your recent trekking trip!

    OSSA - I'm glad your pain checked out.  I'm all achey and creaky too - although I'm used to it now.  Mostly side effects from AI and a bit from old age I guess!  It's funny about pain - we worry about it now that we've gone through BC and we're super sensitive to it.  I had pain when I had my BC but when I had my recurrence in my femur/hip I didn't have any pain at all! 

    Marian thanks for asking about my last MO visit. Everything was fine - my tumour markers were the lowest they have ever been and I hope to see a continuation of that downward trend.

    Someone asked about tumour marker testing and I have mine done every time I have blood work before a MO visit.  I'm not sure why but I've had it done as part of my pre-appt blood work since I ended my original chemo/radiation in 2010.

    I'm actually going for blood work sometime this week- I see the MO again on Oct 30.

    It's true the results are not always reliable but in my case the increase in numbers indicated something was not right.  Luckily my MO was persistent and ran every test until he found an explanation. Turned out to be Mets/Recurrence to my right femur.

    On the other hand I have a friend who has the same MO and her numbers have always been elevated and she is fine.

    MO explained to me that they look for a trend with the test and not just elevated numbers.  It's NORMAL for some women to have high TM results.  But not for TM numbers to continually increase over time - which was what happened in my case.

    As for reconstruction, I"m still "under renovations".  I had a delayed recon with a tissue expander and then implant - started 1 year post mastectomy.  I've had 2 successful fat grafting procedures and may have another next year.  My PS has been very supportive and is not pressuring me at all to "finish" the job as I hear that some PSs do the work and are done regardless of the outcome.

    I see Dr Kerluke (North Vancouver) who works out of LGH and a private clinic in Surrey(?).  I'm very happy with him and his staff and I'm pleased with what he has done for me so far.

    I'm looking forward to the group get together but I'd like to suggest that we do an ornament swap rather than a secret santa.  

    Maybe we can set a price limit and a pot luck list as well.

    What do you all think of that?

    I'm happy to go with what the majority wants.

    Marie

  • Ossa
    Ossa Member Posts: 685
    edited October 2014


    Got my revision surgery date ... Nov 17.. Cant wait.. Look forward to seeing you all on Nov 22 Hope you are still ok to drive Koshka.. Don't think I will be able to drive that soon after surgery..

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited October 2014

    Great news Ossa! I will send out an email next week re potluck. But if anyone missed it, we are having a potluck at my place on Nov. 22.

  • MarieK
    MarieK Member Posts: 467
    edited October 2014

    I'll be at potluck Marian - looking forward to it!

    I'm going to be away for a bit at the beginning of November (Hawaii with hubby) but I'll try and check my email for further details and potluck picks.

    I had a very good visit with my MO today.

    I arrived a few minutes early and he saw me right away - no long waiting room time.  He was actually ahead of schedule today!

    MO is very pleased with my blood test results (both Tumour Markers are way down). He told me in my case - just one small met - radiation was obviously the right choice. He said that the Arimidex should continue to starve any cancer cells in my body.

    I asked him about mammography for my remaining breast and he said in my case it's not warranted. There are no indications and typically he doesn't go looking for a new primary.

    Does anyone here - anyone with a single mastectomy I mean - have mammos still?

    My MO would prefer to send me for other scans - which could give him more info - so he wants me to have another PET scan in January and see him again at the end of January.  I'll wait to hear from BCCA for an appt for that.  My MO told me that the BCCA is now being extra picky for booking PETs.  

    I'm not sure how long the 3 month follow ups will continue but I'm glad to be followed so closely.  

    I also asked my MO about taking additional drugs to combat the effects of the Arimidex on my bones. He told me that at this time my bone density is very good and that if I continue to exercise, take calcium and vitamin D I should have little to no noticeable bone loss. He will send me for further bone density scans every 2 years to monitor my bone health.

    All in all it was a good follow up visit and I'm in a good place mentally and emotionally.

    Happy Halloween everyone!!

    Marie

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited October 2014

    Marie it sounds as though it was a very good appointment. My MO ordered a diagnostic mammo last spring. Enjoy Hawaii and some time away from our monsoon weather too.

    My MO says similar things about exercise etc. keeping osteoporosis at bay while on Anastrozole.

  • Ossa
    Ossa Member Posts: 685
    edited October 2014


    Marie

    Good appointment with your Dr. I have a diagnostic mammogram once a year....

    Heading to Seattle for a few days of R&R and retail therapy with hubby (he will go to Cabela's while I go to outlets =)

    See you at Marian's

     

  • Islandmama2
    Islandmama2 Member Posts: 103
    edited November 2014

    wish I could join you guys for the potluck but I'm still on weekly taxol...

  • CanuckMom
    CanuckMom Member Posts: 143
    edited November 2014

    yes same goes for me, I don't think I will have the energy!  Islandmama is my chemo sister, we are one day apart on tx.

  • Carrie61
    Carrie61 Member Posts: 26
    edited November 2014

    Marie, I had a UMX on my left side over a year ago, and just recently had a mammogram on my right.  I was a bit paranoid of getting another lump and thought I felt swollen lymph nodes but it turned out all clear.  lately I've been hearing that mammograms are not good for you, especially if you do have a lump then it would get smashed, which could cause spreading.  In future I will be getting thermography instead.

    I also get tumours markers checked every 3 months...so far so good.  I have had 3 tumours spotted on an MRI but nothing showed on a PET scan, so not sure what stage I'm at.  can I ask how your MO found your met to your femur?  I'm still not sure about my MRI findings and would like to stay on top if it.

    Marian, I am in awe of you trekking up such a huge mountain after what you've been through...thank God you were kept safe!

    Blessings to all of you B.C. Women...

    Carrie.

  • Ossa
    Ossa Member Posts: 685
    edited November 2014


    Carrie61

    Are you coming to the get together? We should be able to carpool as I live in Chilliwack and Koshka lives in Langley. Would love to meet you.

  • koshka1
    koshka1 Member Posts: 93
    edited November 2014

    carpooling : great idea!!!! 

    Who's all coming??

    Has Marianne heard from last tears ladies ???

  • Gardengirl66
    Gardengirl66 Member Posts: 44
    edited November 2014

    hi , have a question for everyone, in the Vancouver/north shore area ..... ..who do you think is a great oncologist for BC, that you have been happy with? I saw my oncologist last week ...a check up after everything to see how I am doing on tamoxifen....during my appointment , I told him that I did have an itchy red breast, the same breast that had all the treatment .... But never examined or seemed interested that it was a concern. Since then , I have seen my family doctor, she rushed me into a mammogram , tomorrow  is an ultrasound, has phoned me twice at home with results and research she is doing and making sure I am okay. I check off most of the symptoms for inflammatory breast cancer (not what I originally had) , my doctor with her researching also thinks it could be Cellulitist , which looks similar to Ibc and has same symptoms, I am now on some strong pencillian for that...incase that is  what it is. 

    So... I am thinking I might want a new oncologist.....so any recommendations....maybe one that specializes in breast cancer. 

    thanks and hugs to all.......

  • Mouser2843
    Mouser2843 Member Posts: 5
    edited November 2014


    Hi, I live on Vancouver Island. Diagnosis came by a phone call from my GP last New Year's Eve. Jan 9th, I had a mastectomy on my left breast. Started chemo March 9, every 3 weeks. Doxrubicin, and Taxol. Herceptin was added to my Taxol and after the 4 treatments of Taxol my heart function went down to 45%. It is now down to 40.9% so been without any treatment since August 9th!!! Still have my port in, just in case they can restart Herceptin but oncologist said "no more for you" in August. Am triple positive and lately I feel not well.. and not because of the heart thing. I am paranoid of the cancer coming back since I didn't complete all 18 Herceptin treatments (only 4!!!!)/ Being seen by a cardiologist now, seeing an internal Dr. this week for follow up as on heart meds now. Life is not fair lately (to me anyways). I will ask for a CT scan as I feel lumps and bumps where they shouldn't be. My oncologist is in Victoria, my chemo in Nanaimo, surgeon, GP and internal Dr. all in Port Alberni. Terrified? oh yea!  I am waiting for other breast to be removed but everything is on hold because of the heart function decline! Frustrating!!!!!

    Anyone else ever heard of the situation I'm in? Support needed............. thanks!

     

  • Sneakychiquita
    Sneakychiquita Member Posts: 110
    edited November 2014

    Hi Mouser, sorry to hear of the heart function decline with treatment. I can't help you out with any info, but wanted to send out some good vibes for support. Fingers crossed you get the insight you need from your internist this week.

    Marie - I've had one mammo on the remaining breast so far and I think the plan is to continue to do so on a yearly basis. Perhaps you don't need a mammo because the PET scan has you covered? 

    As for recommending MOs, I've been happy with Dr. Gelmon.

    Looking forward to seeing many of you on Nov 22!

  • Islandmama2
    Islandmama2 Member Posts: 103
    edited November 2014

    hi mouser

    Just wanted to say hi. I'm in a nanaimo 

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited November 2014

    Gardengril, very strange for an MO not to examine or question further! But good for your GP and so hope it is cellulitis and also hope that results are fast so no "waiting game" which seems interminable when it stretches out. 

    My MO at BCCA Vancouver is Dr. Shenkier and she is 50% BC and 50% prostate I think. I like her and trust her. Karen Gelmon is the head of BC but harder to get in to see as a result. Sneaky has her and likes her. How was your MO during treatment?

    Koshka I am sending out an email this week~~my husband left last night for our boat so have lots of time now.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited November 2014

    Ha, did not see Sneaky's response until I had posted. Mouser, Liefie is also in Port Alberni so maybe send her a PM as I have not seen her here for ages. I will also let her know when I send out the email re the potluck.

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