Any other young Manitobans out there??

Not from Manitoba, but went through the same thing.Go see you PCP he could also fill out the forms, it worked for me actually.

Good idea Welga.  Just go see your GP and that could be quicker. 

Hi Everyone

Finally some positive news Melanie.  I think you will be much happier with Dr. Pitz.  It seems like there is a big game or something going on about how to pronounce his name.  I finally asked him & he said it was pronounced Peets but spelled Pitz.  Although many of the staff pronounce it wrong.  I hope things go well with him.  My husband & I are a big out there as far as ressearch and supplements go and he respects that.  

 The patient rep was very nice to me too.  Didn't make it a big deal.  I thought I was going to have a fight on my hands.  It was a lesson in assertiveness for me in which I think I need many more.  

Now that your forms are signed try not to think about work.  Focus on your yourself, your family and your health care.  

One small victory for you Melanie.  But, it did help me to feel a bit more in control.  

Hi Diane - Hope you are feeling better.  Is this your 1st lymphedema flair up?  I am a bit concerned about mine.  Went out & bought a sleeve and glove yesterday.  Will have to get it checked in the next bit.

Bev

Hi Diane - I have seen Cath @ the BHC.  I have read that it is important to also wear a glove & it is important to wear both while exercising.  But, who knows.  No one mentioned that it is covered by the gov't to me.  I have a private insurance plan that will cover 90% of it though.  Was your sleeve covered by the gov't? 

Bev

Hi Ladies,

I am from Steinbach and I also have Dr Pitz (PEETZ).  I have also found that he is really open to my ideas, and the research I do.  He is never defensive or annoyed at my questions.  He is young and perhaps not as experienced but I have found him to be right up there on any new research and developments in BC.  If you google him, you will find he won an award a couple of years ago so he is a smart "cookie".  The oncologists at HSC also discuss cases together so you can still benefit from some of the more experienced doctors. 

I was diagnosed in March, had surgery in April, and started chemo in July.  As far as joint pain, I find Advil does more than the recommended Tylenol.  Just check with your doctor or nurse if it's ok for you to take.  I take my chemo in Steinbach which is really great because it's only a few blocks from my house and they have a brand new facility here and the nurses and doctors are really terrific.  There is a lot of communication between my Dr in Steinbach and Dr. Pitx. I see Dr. Pitz every 2 months and he sends me for a variety of scans every 3 months.

As mentioned earlier, Cancer Care Manitoba has a lot of great resources to take advantage of.  Free wig and hats, library, nutritienist, drivers, etc.  I also have a peer support person who calls me every couple months and we just talk about how things are going and bounce ideas off of each other.  

I went with the port rather than PICC because I am an active person.  I heard you had to be more careful with a PICC and you can't go swimming with it.  There are different types of ports, so check that you get the most recent type because it can then be used for certain scans as well.  They always have trouble finding a vein for injections on the scans so  it's a relief when ever they can use my port.  Getting the port put in was however fairly painful because they do it under conscious sedation, so I actually have a memory about the procedure which isn't very pleasant.  

I had 4 FEC treatments and then I was switched to Docetaxal because the cancer was not responding to the FEC.  I am tripple negative so chemo is my only option (no hormone treatments or herceptin).  I had a lot more troublel with the Docetaxal until my 9th treatment when things started to turn around and I got my energy back and the brain fog lifted.  I still have a variety of other side affects like bloating, water retention, watery eyes and finger and toe sensitivy and nail changes.   

I hope I've been helpful.  I wish you all the best!

God Bless

Linda

Dear Ladies,

Happy New Year! sorry that I have not visited this forum for a while. I just read all your postings. Wow, so many postings.

 Melanie, I completely understand how you have felt and I am happy for you that things worked out well. I had some bad experiences with my previous oncologist and I also call patient care who helped me transferred to Dr. Lau. I have been With Dr. Lau for the last two months and have received 4 treatments of Taxotere + Herceptin. I had some issues of low WBC with fevers in my previous treatments and Dr. Lau lowered the dosage of Taxotere to 50mg/unit instead of giving me Neupogen. I think he did this out of the reason of safety and I kind of like it. I received the last treatment on Jan. 8th and now I am waiting for some scans.

Bev, may I ask what kinds of scans Dr. Pitz orders for you every three months? My onc ordered Chest/Abdom CT scan, Muga scan and bone scan for me, which I will take in the following weeks, but he didn't like the idea of my head CT included. I requested it, but he said I don't have any symptoms for that. I don't know how to interprete this and worry a bit about missing the diagnose of potential mets to brain.

Diane, for the finger/toe pains, I took one B75 per day and found it helped alot. I also take Multivitamin, D3, and Fish Oil. I experience minimus SEs now, don't know it is due to the suppliments I take or due to the low dosage of my chemo. Other than low WBC, I almost experience no other side effects, except some shooting pains here and there after chemo that I don't need any pain killer to deal with.

To update you, I have one son, 16 yrs old. I told him about my mets without sugar coating the second day of my diagnose. He was shocked (of couse, my husband as well). They both believed that I was cured and the cancer would not come back before my mets. Now, all of us accepted this reality and are helping each other to get through this. On surface, my son doesn't show any concerns now about my prognosis and he strongly believes that I will survive. I don't know if he has deep fears, since he doesn't like to communicate deep feelings with me. I mentioned about the kids support group to him, but he is not interested. He seems dealing with it well and enjoy the fact that I am a staying home Mom now. I am on STD now and am applying for LTD. I agree with all of you that our health and our family should be our first priority now. I used to be a workholic and everyhing was about work. I am taking a 180 degree of turnaround now and don't think about work at all.

Sorry for my long posting and send you all love and hugs.

Grace

Hi Bev,

I asked my onc to prescribe some sleeping pills for me, in case I lose my sleep. I know it is not good to rely on it, but I take one pill around one month or a few weeks, when I tend to get up frequently at night. I found that one pill occasionally can restore my body timing and give me better sleeps. Maybe it is just me.

I know how anxietious we are with body pains. I experience the same. Doctors doesn't like scaning us twice within 3 months, but I guess you could ask for MRI, which has no radiations. The problem with us is that MRI has a long waiting list and take a long time to schedule.

Yes, our group is getting bigger. Linda and Welga, Welcome here. We formed our own supporting group-:).

Grace

Thanks Grace for the welcome.

What helps me with sleep is melatonine and  lorazépam together.

Nice to see your group growing, I will read you and contribute when possible

Welga

Hello Bev,

For the melatonine when I switch brand recently I had to switch dosage. I used to have a strong brand and only took 1 mg. With the new one I take 5mg. The lorazepam I have been taking it for years, before BC I took .5 and now 1mg. It's still working for me. 

I wake frequently because I drink a lot of water during the day, I can't seem to cut down, Femara gives me dry mouth and thirst. I usually fall back to sleep. Some nights are better than other, it's not perfect, but the added melatonine sure helps. Like you I used to take lorazepam only a few times a week. But since I still have masectomy pains even after 3 years I can't sleep witout it.

Wishing all a better sleep

Welga

Hello eveyone,

Haven't posted for awhile so I thought I would give you an update. Third cycle today of Doxetaxel and it was uneventful. Usually it is the third and fourth day the joint pain hits.  My newest info is that my Her2 changed from -ve to+ve so will be taking Herceptin starting next cycle after a MUGA next week.  Apparently it is something that happens with about 20% of recurrences.  I would like to be above 50% on some things these days but at least it is focusing on those specific cells.  I'm not excited about another year of treatment though. Ordered a custom fit glove and sleeve for lymphedema and can't wait to get this wrapping off.

Welcome to Welga/Linda.

Bev hope you have had a wonderful relaxing vacation.  I don't have anything to add to your sleeping issues.  Maybe you were excited about your trip? I'm quite tired these days so not having any problems personally with that.  I've heard the same thing about getting out of bed if you are not sleeping though.  I have worked shift work and that is where I have heard that for those that have trouble sleeping in the day.  Also no TV before bed and exercise helps one sleep.  I just can't remember the recommendations as to how close to bedtime to avoid.

Grace what is B75?

Melanie I know someone who got a great deal on flights to Vegas $300 for flight and hotel for three nights! Sound like a fun trip to look forward to.

Lastly I was wanting to let you all know about an information evening coming up at the Breast Cancer Centre of Hope on January  27 doors open 630, session from 645-915.   I am on the committee for the Younger and Wiser group that is putting this evening on.  You may have seen or received the info through the mail already.  It is 'Clearing the Fog about Chemo Brain' a presentation from Dr. Heather Palmer a specialist in cognitive rehabilitation on cancer related brain fog.  She did a presentation at the world breast cancer  in 2008 which was excellent and gave some advice on solutions too.  You can register for it and ask more about it by phoning 788-8080.  We also have a fun 'jeopardy' game planned for an activity after Dr. Palmer.  It is usually an enjoyable evening with some cheese veggies/fruit and a time to get to know other women going through or already gone through treatment for BC...possibly make some new friends and connections with someone with a similar circumstance.  I know it is late notice but it is hard to peck at the computer with this dressing, and this week has been busy for me.  Hope to see and meet some of you in person..maybe you are already registered ? If you are let me know and I will look for you there.

Diane

Diane - I signed up for the workshop but think I am going to cancel.  I have had a cold for almost 2 weeks & don't feel like spreading my germs or venturing out in the cold more than I have to. 

Hoping we can meet another time.  I am planning on going to the Breast Cancer conference at the end of Feb as long as my surgery doesn't conflict.

Cuba was the pefect vacation.   Weather was blissful and the people were so charming.  I hope to go  back. 

 Bev

Grace - The 2010 Survivor Conference is on Friday February 26th at the Victoria Inn in Wpg.

The cost is $35.  (includes luncheon and handouts) Registration is a t 8:30 - 9 am.  Conference is from 9 am to 5 pm.  For more info go to www.cancer.ca/Manitoba or call 774-7483 or 1-888-532-6982

Bev