Canadians in British Columbia
Comments
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Marian
I will be home sat. evening as well as all day Sunday..
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Good afternoon ladies!!! My name is Mir. I just wanted to pop in and say hello. I hope everyone is doing well and having a wonderful day!
I am currently undergoing AC treatment, my final one is April 26th (yay) and then I move onto Taxol (weekly) and Herceptin. I live in Vancouver with my wonderful fiancé Chris and am the proud mom of a spunky 8 month old. They are my life and my main reasons, besides myself, for kicking cancers ass!!!
Just wanted to let you all know that my family, bestest friends and I will be walking in the Relay for Life!!! Both myself and long time friend are currently battling breast cancer and we BOTH lost a parent to pancreatic cancer 2 years ago, so this is very important to us. Our team is awesome!!!
If anyone is interested in donating to our team, please do. Every little bit helps. Thanks!!!
http://www.relaybc.ca/faf/donorReg/mobileDonorPledge.asp?ievent=1035186&lis=1&kntae1035186=B114F69440AE4628AC57F229654ECEFE&supId=382128231&team=0&scWidth=320&extSiteType=
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Hi Mir. welcome to the group you never wanted to belong to. We are a bunch of survivors in various stage of treatment. These ladies are great, they wil become part of your family, laugh with you, cry with you, scream with you, even curse with you if needed.We are planning a get together in Langley May 11 you are welcome to join us. Hope your treatment goes well with not to many side affects
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Welcome Mir... as Ossa said, you've landed in a great place even though you didn't want to be here.
Ossa...busy is right. Geesh... work takes up so much time and now the nicer weather is here I am trying to getting outside in my garden and greenhouse when I can. Nice to have some normality back.
I am meeting up with a friend from Vancouver on May 3-6 in Penticton for the wine fest... cant wait. Missed it last year because I was having chemo... gonna make up for that. Normally 4 of us, but 2 dropped out.
Found out today that I do not have BRCA 1 or 2 - yay!! My genetic counsellor did say I should speak to my MO when I see her in June about it as my Nan died of ovarian cancer and that still gives me a 46% chance of getting it too.... I said - but I have a 54% chance of not. So I go back to my original thinking that getting cancer of any kind is a crapshoot !! I am happy if they want to take my ovaries.... no good to me at 53 and all they seem to do is produce estrogen. Still we will see what the MO has to say.
Hugs and best wishes to all xxx
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Welcome, Mir. Congrats on being near the end of AC! I found Taxol to be a lot easier to deal with and fingers crossed you will too.
Marian - I'll have to wait and see before committing to the May 11 gathering. There's a memorial being planned for a good friend of mine for that day (still waiting to hear what time) and while I don't suspect I'd be having troubles yet at that point, you just never know how I'll be doing with the rads.
Tazzy - Congrats on being BRCA negative! How long did you have to wait for your results? I just had my blood drawn a week or so ago.
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sneaky - I had the blood work done in the beginning of January - so only 3 months.... they did say I wouldn't hear until August ???
Hugs ladies
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Welcome Mir a great bunch of ladies here.
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Yay, Tazzy! Glad to hear the good news.
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Miranda, I have thought about you often since you and I were on another thread a few months ago. I think you and I have the same BS. She just did my mastectomy in March and I had a T/E at the same time. How has your permanent implant worked out? Glad to hear you will be done A/C and moving on to Taxol. I agree with Sneaky that Taxol was easier. I am moving on to rads soon. I bookmarked your Relay for Life and will have a look at it and what goes to cancer. I did the CIBC last year with many friends but my understanding is that only 15% actually goes to cancer and the rest to admin.
Tazzy, your grandmother having ovarian cancer gives you a 46% chance of getting it too????
May 11 I hope that rads have not done me in either. Sneaky what time are your appts. at radiation this week? I am still in the dark about it all but hope that when I have the CT sim they can give me more info.
Still in my pjs watchign tennis but soon out to plant some more seeds and then a walk and yoga and it is not raining!
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Marian: enjoy your garden... I know I am going to. My genetic counsellor said the same... 46% chance of getting it...which I know is high, but I looked at it that I have a 54% chance of not. I will make an educated decision after speaking with my MO. As I said, they aren't any good to me at 53... so take 'em
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Welcome Mir, fantastic group of ladies here ... for everything.
Tazzy, yay on the good news.
Marian, if you have a time preference for rads call them and let them know. They'll do their best to get you in at that time. You'll get your appts a week at a time.
Had my last Herceptin on Friday. I'm officially done with the chemo ward!! It's been a long year. I didn't have a port put in and my left hand proved to be a challenge for the IVs after my right hand wasn't available ... after all said and done it feels a little anticlimactic. Still feeling a bit tired and run down. Kinda thought (hoped) my energy levels would be back up by now.
Hope to meet up with you guys May 11th. My son has a ball game in Richmond that morning. I'm hoping that it'll be a short game and I'll have enough time to head out to Langley.
Have a good week ladies!
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Hey Marian! Dr. Dingee was my BS. I sure hope Taxol is easier, I won't have the same kind of support as I did with the AC treatments. Hazel is learning to walk now, so my days are so busy, no time for fatigue haha. I tried to find the % of what we raise for relay, but haven't been able to find it. I sure hope it's A LOT more than 15%!!! Not sure if I want to do the CIBC one.
Nervous about Taxol weekly because I don't have a port and I reeeeaaaaaallly don't want one. Hopefully my veins stay good.
Can't wait till this is all behind me!!!! I should be finished chemo by August and that's when we celebrate Hazel's first birthday, Chris and my anniversary and the end of chemo!!! BIG PARTY!!! Then get rads out of the way. Already booked 2 vacations!!! Yes 2!!! Mexico, 10 days in January (right after last Herceptin) and Vegas, weekend in March for my 35th bday and Chris's 31st. So excited.
Hope everyone is having a wonderful day!!!0 -
Miranda, so glad you are sounding upbeat! I love it too that you are making plans. You young people have way better veins so you should be fine. And Hazel walking soon!
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Cdnchick that's great you were able to complete your herceptin. What great timing, summer around the corner. I still have 10 left and I hear you about the veins...no port here either. I just want to be able to finish. Congrats!
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yeah..last herceptin/taxol tomorrow..not looking forward to the back pain 5 days later.8( ..then just herceptin every 3 weeks till next year...oh yes..forgot still have 3 weeks of radiation..starting 7-8 weeks from now..cant believe im almost 1/2 way done..8)
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Yay pands.. good luck tomorrow
Friendly reminder... time for a "headcount" who is meeting in Langley May 11 at Olive Garden????
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I would have liked to meet you all at Olive Garden, but I have the oral surgery on May 10th so I doubt I'll be in much shape to drive, let alone eat and talk.LOL Hopefully I can on the next meet up.
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Doing the happy dance pands.
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Ossa I am pretty sure I will come but just on the off chance rads does a number on me I can't say for sure. Do you think we should put it on the Canadian thread too just in case some don't look here?
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Pands .....yippee ky ayyyyy!!! I am now doing just the herceptin every 3 weeks, and you can feel the freedom. Rads will blow by fast.
Wish I could meet up with you all in May but I am flying out on May 12 with DD and 2 grand kids to Disneyland. Have a great time girls.0 -
Congrats on getting over this latest hurdle, Pands.
I'm leaning towards 'yes' for the May 11 lunch, but I can't guarantee it at this point. I'll know better in about a week. I'd need to be back in Vancouver around 2:30-3:00 if I do go.
I'm supposed to start rads on Thursday but I've got a gut feeling that the negatives are going to outweight the positives for me with this treatment. I'm so close to just not showing up. Okay, I wouldn't do that, but I am thinking of saying no to the axillary and supraclavicular fields and only approving the chest when I get there. I've warned them of this via phone but only heard back from a tech who said my RO was going to call me, but he never did. I've read only positive reviews of the radiation dept at the BCCA centre in Vancouver, but I honestly don't get a warm fuzzy feeling from the place. I miss my MO... I had way more confidence in her and the whole department than I do where I'm at with treatment now. But I'll be the first to admit that I have no real reason to have these thoughts, it's just a gut feeling.
Anyone out there ever refuse recommended treatment?
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Good Idea Marian
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Sneaky, I think you lucked out with Gelmon. I can't say that I ever had a warm and fuzzy feeling with my MO though I do like and respect her. I just find that everyone is so busy at BCCA and I always feel like I need to "hurry up" with whatever my issue is so that the doctor can move on. But I have to admit yesterday for the CT mapping, everyone was nice enough and did not rush the positioning at all as it took awhile to get my arm and head into a comfortable position.
But I have to admit I was unnerved about the fact that I will be radiated half way up my neck~~yes supraclavicular and I don't know why I was surprised. I have had 7/14 nodes and the 7th was large and extranodal and not killed off by chemo so it stands to reason they need to hit those nodes above my collarbone. Ah, new things to worry about though crazily I am not so upset as I was a month ago. I also get it about the axilla area for me; same I guess as supraclavicular as there may still be vestages of cancer hanging about.
For you though you had no nodes from the SNB so different scenario though LVI~~does anyone know how radiation works on that~~after all the radiation is attaching the immune and vascular system to some degree.
pands, glad to hear that you have finished yet another stage of treatment!
Sunny day in the province and I saw on the Can thread, Tazzy that it is even warmer up your way.
I had 0800 physio (great appt. and he is so happy with my ROM) and then 0900 yoga (7th day in a row) but now I am feeling exhausted. 2nd cup of coffee and maybe some energy will get me out in the garden.
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sneaky - just wondering why you would have the radiation to your axilla and supraclavicular area when your had no positive lymph nodes? It seems reasonable to me that they do the whole breast for sure. Do you know how many Gray you are scheduled to have? In my particular case, I had only full breast and I did have 2 positive nodes, but the area within the beam actually covered the sentinel node area. This is what I was told.
I know what you mean about the radiation department not feeling warm and fuzzy, but the actual technicians who do the treatments are just amazing - so caring and compassionate. Of course I can only speak for the ones that I saw every day. The actual treatment area is down in the basement - so you most likely haven't been down there yet. I know I hadn't until my actual treatments started.
The one good thing about rads is that it is over before you know it. I am all done and everything was just fine - no side effects worth talking about - only a red breast and a bit of itch.
In terms of refusing recommended treatment - I would expect it happens all the time. Its your body, you get to choose what happens to it. Good luck with your decision.
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Maureen, did you have any lympho-vascular involvement? I suspect that this may be part of the rads tx for Sneaky though I am waiting to hear what she has to say!
From my recall you had 16, right and I see that you only had breast. I get the whole meal deal yet again so almost double the number and breast, supraclavicular and axilla so not sure it will be quite the "breeze" you had. I am not looking for trouble but reality is that with 28 sessions, and my throat involved (impacts not only a sore throat but also possible thyroid issue) it may be a bit more difficult.
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Marian's correct, it's the LVI (very extensive according to the latest pathology review). There have been a few studies that looked at locoregional recurrence rates among node-negative women and it was shown that the rate can be as high as 25% for those with certain characteristics. Unfortunately for me, I am in the high risk bracket due to LVI, grade 3, margin < 2mm, premenopausal, and age < 40 yrs. Most of the recurrences (80%'ish) happen at the chest wall, but there are some who have the cancer show up in the axillary nodes, supraclavicular nodes, or internal mammary chain. My RO said because my LVI was very extensive it's prudent to treat the areas where lymph drains to. My case was reviewed by several physicians and the pathologist so it's not just his opinion. I'm fairly confident I can deal with temporary symptoms from radiation (however brutal they can be for some), but I've just got this terrible feeling that I will be one of the unlucky few who suffer from debilitating lymphodema or brachial plexopathy. I no longer disregard small chances of bad things happening since realizing that the tinnitus I developed during chemo is likely permanent. I am slowly going insane because there is no escape from this high-pitched ringing. I hear it 24/7. I don't want to lose who I am to this disease. Everything I do that makes me happy involves pushing myself physically (often to extremes) and those side effects I fear most could bring an end to that.
Not looking forward to tomorrow.
PS - Chest would involve 50.4 Gy, spread across 28 treatments; Axilla would involve 45 Gy spread across 25 treatment. Not sure about the supraclavicular field.
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Sounds like not a lot of you can make it May 11, so maybe we need to change the date??? Any suggestions
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Marian - I had 16 whole breast rads plus 4 boosts. I had a total of 52.5 Gray - the whole breast was 2.65 Grayeach for 16, then 2.5 Gray each for 4 boosts. My pathology report said Lympatic Vascular invasion present - so perhaps that is what makes the difference in the protocol. Oh Marian - I hope all goes well for you with the radiation - do you have a start date yet? My friend had 28 treatments which included the supraclavicular and the axilla and she was just fine - so not everyone gets the sore throat during treatment. I too would worry about the thyroid issues. I read somehwere that taking iodine during the treatments prevents the thyroid from taking up the radiation and so helps protect the gland.
Sneaky - so sorry that you have the tinnutus from the taxol - that must be awful for you. Have you considered trying acupuncture for that? Like I mentioned above - it must be the extensive lymphatic invasion which makes a difference in where they radiate. These treatments are brutal in the side effects that they can give. I did consider not doing the radiation because I was so scared of the side effects, but I went ahead and did them - now I will have to live with the fall out when it presents itself. I do worry about the high incidence of chest wall recurrences since I have a margin there of a mere 0.5mm.
What a journey we are all on. Hugs to you both, and I hope you will soon feel at peace about the decisions that you have to make. There is a Spring Rads 2013 thread which has a very encouraging leader - she was a big help to me getting through the treatments.
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Ossa, the next weekend is a long one so probably not a good idea and I know that the next one at the end of the month, we may let our son take our only car to the island for a triathlon. I know it is a long way off but June 22 would be good for me because Dick will then be gone on his journey. I do think though that we should write off May 11.
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Thanks for the encouragement, Adagio. I think I'm probably going through the normal course of adjusting to a new reality and hopefully will be feeling more positive about things with some time.
Ossa -will get back to you shortly with some dates for our luncheon
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