Canadians in British Columbia
Comments
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cathy, this page has the BCCA resources for counselling http://www.bccancer.bc.ca/our-services/services/supportive-care/patient-family-counselling
I think the Richmond chemo program is a satellite from the Vancouver office so I'd call the Vancouver branch
hang in there. It gets better
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Hello Everyone!
It's been a while since I've been on here and it seems I only pop in when I'm back on the front lines battling with this disease.
Hello Marian!! It's good to see you are still on here like a house mother offering up your great advice and support!
Cathy67 I had a PICC line and it worked really well for me. I have terrible veins and this saved me a lot of pain from "attempts".
It made the chemo infusions so easy. My very first chemo did not go well and I ended up having a reaction to the "red devil" that left my arm scarred.
It's a bit of a hassle for maintenance (flushing) and not getting it wet - I found a vacuum sleeve online that worked well for showering and even swimming. I think it's used for casts as well.
When chemo was over they just pulled out the PICC line and put a bandaid on the insertion site. Just a tiny dot of a scar!
Mind you I had chemo this time of year so long sleeves covered the PICC line nicely.
I imagine it would be more obvious and a bit of a hassle for chemo in short sleeve weather because it is a tube sticking out of your arm that needs covering up when not in use - like dressings or a mesh sock to cover.
Marie
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MarieK! Long time no see, but had you planned to tells something?
Marian
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Sorry my computer is acting up much like my cancer!
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Moth,
I will call tomorrow, hopefully there is someone to pick up the call.
I was so scared in the past two to three months, that I even did not cry. But these days, I started to weep, meanwhile be mom of a teen girl, already challenging life, not it gets worse.
Thanks this thread and the ladies here!
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Marie,
Thanks! My friends also told me, it is the right time to wear wig, otherwise it will be too hot in the summer.
I stayed a while here back in year 2012, for my birads 3 mammogram, then I left and almost always on six months followup, till this time, the time bomb finally bombs.
This is the forum nobody wants to come, but it is filled with warmth.
Hopefully we can hang on in Vancouver.
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cathy67: I highly recommend West Coast Wigs (westcoastwigs.com ) 604 980-3211. Excellent, personal one on one consultation. Really well made wigs. She is on the North Shore, just behind the Michael's store I didn't wear my wig in summer. Too hot! I was happy with scarves but with the gloomy wet cold Fall I am wearing my wig.
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Elderberry,
Like their customized service, did you buy yours there? How much it cost? Must be very expensive.
Thanks!
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cathy67, working through a cancer diagnosis is a lonely scary business. Don't be shy in saying yes, you are having a tough time coping, if that is how you feel. I could not have survived through that time without help.....the fear of the unknown seems to grow bigger as you get closer to starting treatment (that still happens to me even now) Sending you warm hugs. Let us know how your phone calls go. We’re here.
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Pots,
Thanks. The worst moment is to get the medical report, and from now on, will come more and more reports.
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Vilma65,
Thanks, marked.
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Hi Ladies,
I called the counselling support line under BC cancer agency, someone will call me for an appointment, it will be on site appointment in BC cancer agency. Hopefully it will help.
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Vancouver ladies,
I am back. I visited two wig stores today, had a quick consultation, the real hair cost around 2000, and man-made cost over 400. I like the real hair wig of course, I am thinking I can even use it later after my treatment.
Next task is to prepare medicine for constipation. I live with my 14 years, and my husband only visits us biweekly, so I got to prepare everything myself in advance. I prepared much more than I need for surgery, I hope my chemo will go smooth, and that what I've prepared turns out useless.
Thanks this forum, I've learned so much.
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cath67 I’m glad you found a wig you like. I had lots of wigs for different looks but my favourite was a blend of real hair and synthetic. I got it at west coast wigs in North Vancouver.
As for preparing for constipation a chemo nurse told me to eat 25 green grapes. I’m not sure what the science is behind that but it worked for me!Good luck with your chemo
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MarieK,
Thanks.
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MarieK! Long time, no see. How are you? I am recovering from crazy pain but got an amazing embedded pain pump and wow, new life.
Marian
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Hi moth,
Today counselor at BC Cancer Agency called me, and I will have face to face meeting with her next week.
Will get back to you, thanks!
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Dear ladies,
I am doing research and have another question, do you use Neulasta? It is super expensive. And I only have MSP coverage, don't know how to handle it if I need. Always bad news coming in.
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Hi Cathy - glad you're going to see the counsellor!
Don't worry about the neulasta. I have extended health but there's also a whole separate program from the manufacturer of neulasta (& grastofil - which is a bio equivalent and a bit cheaper but still expensive) & the federal government & the manufacturers have a deal to pay for expensive drugs which are not covered by MSP. There's someone at the cancer agency whose job essentially is to find the funding for medications for people who cannot afford them. So if you're prescribed that & you either don't have a plan or your plan doesn't pay a 100%, you get referred to them and they'll help sort out the paperwork and get it heavily discounted.0 -
Hi moth,
Thanks for the info. Yes, I heard of that. Another question is that, I am still waiting for the oncotype score. But MO said, his estimation is 5% based on dd ACT, and he said three weeks 4 rounds AC then followed by T won't work effectively for me. Then, I found almost all the patients got delayed schedule due to blood test, in other words, dd ACT is almost impossible to carry on without medication. If so, shall I be prescribed medication directly but not just delay the schedule?
Without my score, MO said, 5% absolute chemo benefit with DD ACT, or no chemo. No option for TC, no option for 3 weeks AC followed by T. So my understanding is, 3 weeks is the option I shall avoid, cause it has side effect and no absolute benefit, so hard!
MO is so hard to meet, must ask all these questions before I start chemo.
Thank you, moth, you are so patient.
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Hi moth,
Another question, does neulasta cause bone pain? Is it very hard to spend through? And any bad side effect due to this medicine?
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I didn't find the bone pain too bad. It was there but not so bad that I couldn't stand it. I don't even think I took the antihistamines all the time (they help with the bone pain). I kept walking and exercising and stretching. I remember I occasionally used heating pads but mostly it was just something I could ignore.
I was on both grastofil and neulasta (at different times). I didn't respond to either of them very well & we tried both just in case I was one of the people for whom 1 worked better than the other but it really made no difference which type I used. I used them right through chemo but my white blood cell counts were pathetic right through. Without the shots though I think I would have been at 0 & they would have cancelled my chemo altogether. Many people manage dose dense just fine so I'd just hope for the best. You just can't tell how you'll react.
Oncotype will definitely give you more info. Remember to be sure to be clear how they're counting the benefit of chemo. Are they talking about absolute benefit or relative? There was a study showing that even med students struggle with considering absolute & relative risks https://onlinelibrary.wiley.com/doi/pdf/10.3322/canjclin.54.3.123Surgery is the biggest bang for the buck - it gives the largest single survival benefit. The chemo &/or rads are primarily to prevent metastatic recurrence and increase odds of long term survival.
I'm not sure if you've seen the Predict website already? It gives you large pooled survival & treatment data (some of the data used to develop the statistical model by the way is from BC but the model itself was developed in the UK). https://breast.predict.nhs.uk/predict_v2.1/don't worry about asking questions! & if I don't answer it's only because I'm swamped with school. It's an endless stream of exams now & I have a couple term papers to write.
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I was on Neopogen, not Neulasta as that was paid for in BC and I think the Victory Program paid part of it, I know we had to fill out the Fair Pharmacare at that time. Cathy, has it been suggested that you need Neulasta or Neupogen? My cancer was aggressive and my oncologist wanted it done dose dense which means the drug works to get your blood levels back as close to normal as possible. It is a two week cycle instead of 3 weeks and certainly not everyone needs that.
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Marianelizabeth,
Yes, I was recommended dose dense ACT, with 5% absolute chemo benefit, but that number is MO's estimation, I am waiting for my oncotype score, cause 5% is too hard to decide. MO also said, only two weeks works effectively for me, I just wonder if delay due to low white blood cell will actually make it as three weeks which has lower chemo benefit.
Thanks for the medication information, I will check whether I will be covered.
Too much stuff to worry, already got flu shot myself, but teen daughter refused to get it, I am not sure if I will get cold from her, need stable white blood cell to fight infection. And there are only two MOs in richmond bc, hard to see MO, impossible to see MO.
Enjoy your day.
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Hi moth,
Thanks, I will study it later. Busy weekend, still need to serve family. Also, I wonder if talk with radiologist is easy, I am margin negative, however the report says the followings, I wonder if that is problem cause it is less than 2mm.
- Invasive Carcinoma Margin: Negative for invasive carcinoma
- Distance from closest margin: 0.1 mm
- DCIS Margin: Negative for DCIS
- Distance of DCIS from closest margin: 1.5 mm
Too much to worry about, no time to think of the margin, at least they are claimed as negative, don't know what this means. Surgeon did not explain this to me, just said margin negative, then I asked for the copy of the pathology report.
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My husband also refused to do the flu shot but said if chemo wanted him to do it (I said that it is really not for you, it is to protect me.) i asked my chemo nurse on Thursday and I hardly got the words out of my mouth before she said definitely yes. That might help?
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Thank you Marianelizabeth,
I will tell my daughter this, not sure if she can accept it.
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Marianelizabeth, my daughter did flu shot earlier this week! Thanks. And I talked to my husband, not sure he will do, but he already got very bad cold, he works in Seattle, so I told him not come here till he totally recovered.
Moth, I met with counselor yesterday, and we spent two hours together. I talked a lot, the screening program cannot ensure early caught, the mistake of my surgery schedule, annoying disturbances from surroundings, financial issue... She gave me some good suggestions, and arranged an art therapy class for me, but that is in December, I am not sure if I can join due to chemo then, but she said, some patients can go during chemo, not sure if my dd ACT will let me go. And good suggestions about social life, I need social life, but must those I like. For those voices that i don't want to listen to, I just skip. For the ladies who really love me and support me, hang out with them. So I will make some changes on my daily activities. Counselor said, right now my main fight is treatment, it is not timing for me to think over how to deal with those voices, so just avoid! She also said, the trick is to pick up those activities with focus, for example, lessons, seminars, ... but not to attend those chats, chats will bring out negative voices, they always remind me I was caught by cancer, but they are not, under the name of caring. We have no way to change others, but we can change us.
And I bought two chemo caps on amazon, very soft.
Not sure if Christmas will let chemo a break, however I really don't want break, cause dd ACT works more effectively.
And one financial issue, usually have discounts from med company based on family income. My husband has very good income, but he only give $ that covers basic life, I have zero income. I wonder if I can get discount in that case, don't know how to explain this to the nurse then. I heard we can do income tax claim separately, but never tried it. It is almost year end, maybe try this for year 2019? But our relationship is stable, don't know if separate tax claim will damage our marriage, but my treatment will be long term, not sure what kind of financial change I shall do.
Sorry for so much wordings,,, thanks for listening.
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cathy67, thanks for letting us know about your chat with the counsellor. I'm sure it felt like a huge relief to have someone to talk to who gets it. Maybe see if you can find a support group for newly diagnosed breast cancer, it made a huge difference to not feel so alone during and after treatment. Inspire health has some great seminars to check out too.As a cancer patient in Canada, there is very little you pay for directly as part of your treatment.....the drugs are usually all covered. Things like mastectomy prosthetics, wigs, lymphedema sleeves and massage therapy were out of pocket. I'm not sure what other financial costs you are expecting?
It's good advice to focus on the treatment, focus on now....I think you will be surprised at what you can still do....many of us exercised, went out, went grocery shopping and tried to live our lives as best we could while being careful. I carried hand sanitizer all the time. There are times during treatment where your world gets smaller for a few days mainly because you feel like crap and then may very well bounce back. You won't know what you can or can't do until you are in treatment. Not knowing is hard, I for one,tend to think things will be worse than they are.
Be well,
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