Canadians in British Columbia
Comments
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June 22 would not work now that I look forward to June. Sneaky you and I might be doing an all day session at BCCA if we do the minfulness classes.
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Copy/paste here from Canadian thread:
Sneaky, I am really interested in how the rads gang take your opinion today and of course, what your decision is.
I am feeling more at peace with the need for the full rads deal as I know I had 7/14 and #7 was after all that chemo and was etranodal and biggish. I know I need to hit those supraclavicular nodes.
Adagio, I will ask about iodine during rads. Anybody got anything eles to say about rads to the supraclavicular area?
Just back from an appt. at BCCA to see a psychiatrist I was referred to a month ago when I was really depressed. It was good and different from the times I saw a counsellor. She talked about the anitdepressants in general and the one I am on and how they work. I will continue for now and am feeling better for sure but whether the drugs in combination with the weather improving are helping is hard to say. She also says that is some cases S/E caused by Tamoxifen and the aromatase inhibitors are helped by antidepressants. I have been off Anastrozole for a month but may go back on it next week when I see my MO. But what I did find interesting is that this doctor does some work with mindfulness-based cognitive therapy for cancer~~this is actually the name of a new book she got recently and has lent me! Since I am supposed to start several 2 hour sessions of mindfulness at the cancer agency May 7 this may be of value to me. There is also a session in the fall through VGH that I may be a candidate for. Now back at yoga for almost 2 weeks and having gone 7 days in a row, and feeling so much better I am sure has value too. I am hopeful!
Adagio, I do appreciate your thoughts as Sneaky and I have gone thorugh the rads issues. I also appreciate your giving me your actual plans with numbers! I will have that info when I go and as always I work better when I know more.
Marian
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arrghhh..loseing my hair and eyebrows that had come back due to taxol...oh well...lol8)
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pands, it will come back faster now. I lost my eyelashes/brows three times about three months apart. The new eyelashes were growing in before the "old"once fell out
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yes..got call today...looks like rads will start mid may to early june..not end of july like i was told in november...whoo hoo...
positioning may 7th...on my way..0 -
That's good news, pands. You'll be done before you know it!
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Haven't read all the posts but skimmed thru. Do they radiate the thyroid. Since I swallowed a fish bone and got an xray my thyroid which was not the best is now bad and I now need to be on thyroid meds. Oh brother what next.
PS. I am sending the hairy fairy over to get all your girls hair growing. I hope you don't mind.
Sneaky, For ringing in the ears you could try white noise like a fan. I know they do this for tinnitis type retraining for the ear. It doesn't get rid of the ringing but it my distract you bit. Cancer the gift that keeps giving!
For those having rads to the lymph nodes. Make sure you drill your doctor about lymphedema possibilites, many may shrug it off because the docs aren't educated enough in this field. Its a serious thing though.
Better still, go see a Massage therapist trained in Manual lymph drainage (MLD) to get assessed on your risk for lymphedema. MLD massage drains the collected fluid that can't drain due to no nodes anymore or if they are radiated to death and other nodes can't carry the load ( a feeling of fullness or pain or swelling is a clue) Google, Dr Vodder school for finding a therapist in your area. This could save a lot of pain and money in the end.
You girls are solid rocks and are all so brave.
I am in your pocket even though I don't visit this thread much.0 -
hugz - I think the hairy fairy made it over here... my eyelashes are growing!
I'll definitely seek out help for the tinnitus soon and am willing to try most anything to help deal with it. For now, I've found ambient-type music helps with getting to sleep. I just kind of panic and freak out sometimes when it's really loud, realizing that this could be how it is forever. I'm hoping that meditation class Marian and I are enrolled in will also somehow help my mind get beyond the ringing.
Marian - Glad to hear your time with the psych was good. Keep exercising... it helps us! I'll see you soon in class.
You're almost there, Pands! Big hugs, and I hope that hairy fairy does the trick for you too. I don't know about you, but I think I miss my eyelashes and eyebrows more so than the hair on my head. At least with being bald I don't have to spend time doing my hair in the morning
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Sneaky what time do you start? Jumpin in your pocket early. Don't worry, I lost weight lol.
Edit: ROFL! I am definitely time zone challenged....0 -
You have perfect timing, She! You jumped in just in time for my second zap session. Thanks, lady.
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Sneaky, I thought losing my hair was bad but once the eyelashes and eyebrow disappeared I really identified with ET the alien. It really bothered me to no end. I would rather be bald than no eyelashes and eyebrows Now my thyroid is really thinning them again. ugh
You are correct by playing music for you tinnitus. When in treatment for hyperacusis they had me listen to white noise and listen to music to retrain my ear. Although your tinnitus is med related, you may get relief with the music white noise trick. Anything to put the ringing in the background.
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Hello Everyone!
The rain is back! It sucks...
I don't come on this thread too often - it saddens me to see the original post from Sue and know that she is no longer here.
I was at BCAA yesterday having a PET scan and it occurred to me that one of you may have been there too. We might have crossed paths and not realized it.
I try to smile at everyone I see while I'm there - you never know - and it gives me comfort to know that I am not the only one going through this.
Try to keep dry today and have a good weekend!
Marie
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Bearcub, the 10 you have left will be over before you know it. I'm finding that I'm just exhauseted days 2-6 after herceptin and I'm wondering if you are feeling the same way. My MO didn't think my tiredness was due to this but its been the same pattern.
Marian and Sneaky ... was just wondering how you guys hook up with a psychologist/meditation class at BCCA? Hope rads is going ok.
Pands ... {{big hug}}
Hugz ... thanks for the info re massage therapists.
Big Hugs to everyone...
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Tinnitis- have this as well as a SE from chemo. Horrible ... I am 5 months PFC and it took some adjusting. The trick for me is not acknowledging it. So I don't. Mind over matter. It really does work! My mother used to say "I will not let myself go there", she was very strong and her words ring true.(not trying to be punny
)In June I hope to have cataract surgery on one eye and that for me has been the worst . One very cloudy eye makes things unbalanced, even with my new prescription. It feels like I am 'off' all the time. Neuropathy has been better in my feet but no improvement in my hands. I too dealt with depression after rads ended, but I also experienced great personal losses during that time. I needed to grieve deeply, without meds, feeling that if I delayed it I would only face it later.
The chemo fog has finally lifted, yay, and I have a better handle on my emotions as a result. Having a wonderful counselor helps, a perfect fit (it took a couple). Other shitty SE's I am working with but I get sick and tired of my own whining and I know, healing takes time. It's all new to me~
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CdnChick...SMH has Mindful Meditation classes as well as counselors available at no charge. Just call their family services line at the cancer Center. There are other options available as well. Good luck and if you don't get a good fit, request another counselor.
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Marie - Was it me? I was there yesterday for rads. Hopefully I smiled back, but I have been in a fog lately and been looking right past people a lot.
CdnChick - The mindfulness meditation class Marian and I are enrolled in happens once a week at the Vancouver centre (Tuesday afternoon for this session, but unsure if that's always the case). As whaevah mentioned about that available through the SMH, this class and other things offered through Patient and Family Counselling Services on the 5th floor at the Vancouver centre are free. If you're interested in the meditation class, you should contact them as soon as you can because there is a wait list.
SEs... I've been doing better with the tinnitus these last couple of days. It's not that it's going away, just that I've managed to distract myself from it a lot more. I think I'll survive this one. However, the death of my libido may be a more difficult SE to overcome. TMI?
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Nah, not TMI, same here, but due to the fact that I do have a husband it is not so well received~~the fact that I have no interest I mean.
Cndchick, we had to wait this long~~signed up in January for the Mindfulness sessions starting in May so as Sneaky says, give them a call. I asked myself about a counsellor a few months ago as I figured it would not hurt but it was not really successful; as whaevah says it requires a good fit. I saw the counsellor 3 times but by then I was pretty down and so my MO referred me to one of the BCCA psychiatrists and that took a month and I just saw her Thursday finally. Meanwhile I have been on antidepressents (low dose) for that month and maybe they are working though there are definitely S/E and I don't plan on this being long term. Even though it is colder and wet now I feel that spring/summer coming is going to make a difference for me. Being back at yoga with its own component of mindfulness has made a huge difference. I was off for several weeks following surgery.
As for the chemo S/E I did not get those S/E that Sneaky and whaevah have got so can't complain. I still have totally numb toes and my taste buds are still half gone but no persistent really big issues like you guys with vision and hearing problems.
Sneaky, how were the first two rads sessions? Did you end with both axilla and supraclavicular done too?
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Libito.. what libito.... seem to remember something from loooong ago Thanks Tamoxifen
Still waiting from prescription She told me about.. hope that will help
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What prescription? Will something help libido? I've read about scream cream on another thread, but that just seemed to be more about making the act of having sex less painful and more enjoyable. Something to help the actual 'desire' to get it on with someone I haven't come across yet. I haven't even started my Tamoxifen yet so I can only imagine that things are going to get worse and not better from this point on. This said, I really do hope for an improvement and will give a prescription med a try if it might help.
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Marian - All fields, zapped twice now. I posted a small explanation on the Canadian thread. It was decided by pragmatism, not gut feelings or stats. They had problems with the equipment on the first day so I had my arm above my head for close to an hour (my shoulder protested loudly), but things went much more smoothly on the second. One more longer day is expected before getting in the express lane. The techs are nice enough, but I'm still not feeling good about this.
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Cdnchick I actually haven't had any SE while taking herceptin..I had bloodwork done yesterday and will find out Tuesday if things are back to normal...my WBC and platelets were still low 3 months ago. I have heard that herceptin can mess with the counts, could be why you are tired.
It's nice to know I am not the only one who has libito issues.0 -
sneaky ys, it was scream cream that She referred to and that Ossa is waiting on ingredients for I think. So it is indeed something to make sex more enjoyable should the situation arise. I have not asked for it as I have other things to worry about for the moment though I suppose some day I may ask my MO about it; or my GP who is the only medical person come to think of it, who has even enquired about "sexual relations" while going through treatment. She sent us the "recipe" is you want it.
Sneaky, do you get to have the same time for rads every day once you start? I expect a call tomorrow for the start.
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Hi everyone! I am recovering from my second breast cancer...no tah tahs now....but I highly recommend the Rapid Access Breast Clinic in Mount St. Joseph's Hospital in Vancouver. I was seen rapidly, got my surgery rapidly, was treated with dignity and kindness and it's a place where you get ALL the needed specialists! I am from Powell River where sentinel node biopsies aren't done so I had to go out-of-town for this procedure, having had significant pain from aux. dissection from first cancer and then deciding on sentinel node this time around (a LOT less pain). I couldn't even get my drain removed here in proper arrangement, so removed it myself...yes...they actually have instructions from a hospital on how to do this. Has anyone else had LVI in their diagnosis and NOT recommended chemo? Omy onco said it would be too much from a 7mm, node negative cancer......any opinions?
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Sneaky, I was wondering if you've spoken to your friend who is doing cold caps. How is she doing? If she's from Squamish then I think I'm following in all her footsteps. Everywhere I go, I keep hearing how a Squamish woman is doing the same thing as I am.
I'm on day 11 so it's too early to know if I will be successful in keeping my hair. Day 21 seems to be the "magic day" and I'll have had my second infusion by then.
Blessings to everyone for a beautiful Sunday
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bluepearl, MSJH was where I got started with the clinic there too, last July. I worked there decades ago too and it is a small caring hospital. As for LVI and chemo, can't say as mine was extensive and also has 6/8 nodes after SNB (a little more than an SNB as BS could see several pearly nodes right away) and then 1/6 after this last round with umx and axillary dissection. So am I hearing right that the MO does not recmmend chemo for you? Is that here or Powell River? Are they recommending any treatment?
We have friends near Eagle River and it is so beautiful in that area!
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bluepearl - Sorry to hear you're on your second run with this. I was node-negative with extensive LVI and was told that I had a 70% chance of recurrence without chemo. Needless to say, they emphasized that I really needed to have chemo. But I think it also had a lot to do with the fact that I was < 40 yrs (barely) and multifocal with some areas demonstrating to be highly aggressive. I believe most docs here are pretty good at taking an individualized approach, but I would certainly speak up and ask for a review or second opinion if you're not totally comfortable with the treatment plan. Have they provided you with some stats to help guide you in your decision making? You can ask your MO to see if the Oncotype test can be covered by our provincial healthcare. My case satisfied whatever criteria they needed to pay for it, but I opted out because there was no guarantee that the more aggressive cancer cells would have been tested. If I got a low score I probably wouldn't pass on the chemo because I'd always wonder how well the test reflected my actual risk. Good luck with your next steps.
shipsgirl - I saw her on April 17th, which would have been about a week after chemo #3. Yes, she lives in Squamish and she still had all her hair from what I could tell (she was wearing a hat). I'm fairly certain I started my losing my hair around Day 14 of AC - I shaved it off the night after my 2nd chemo. Fingers crossed over these next couple of days for you, but I think you'll be fine.
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Thanks Sneaky. Please give her my regards. She's a trailblazer.
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I went to an oncologist in Victoria. Seems they still do not have my hormone status yet either. In any case, the oncologist said no to chemo for the time being, dependent on hormone scores, but the LVI did not say whether it was focal, moderate or extensive. The needle biopsy had said "no LVI" but after surgery, there it was. I am almost 63. I asked about the oncotype...not covered in BC...but he didn't really recommend that either.. said 7mm, grade 2, clean lymph nodes....pretty good prognosis and more so if ER/PR+ and Her-.....I am kinda on the "outside" edge of chemo too....March 4th I had surgery, saw oncologist April 23....and still NO hormone status. I also didn't get a Ki67 but mitotic score was 1 which was good, at least. Last cancer, I got everything (stage 1, grade 1, no LVI, lymphnodes clean, Ki67 less than 10%, mitotic rate 1, 1 cm...no rads, no chemo). I am taking tamoxifen now, though....didn't take it for first cancer...afraid of strokes since I had two atrial fibrillations, now...well....don't care....take it to starve any cancer cells that MAY have gotten away. I hope. I spent two years worrying and it didn't stop cancer coming for a second visit, so I've quit worrying. Bleh!
Wishing everyone good health ahead!!!
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We went to DS's home for dinner last night DIL's parents were there too. Just before dinner Ds presented "the moms" with a gift.. When we opened them it was afigurine showing a grandma and baby.... I AM GOING TO BE A GRANDMA.... happydance... Not allowed to tell anyone yet so sssshhh..so excited
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Yay Ossa!!
So happy for you! I love just popping in on the boards and seeing happy news
Hi everyone *waves* - haven't been able to keep up but I hope everyone is doing okay. Will try to do some back-reading soon. I think we have a few new ladies too, so "welcome"
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