Canadians in British Columbia
Comments
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Marian yay happydance....
Tazzy nice to be done huh
Tazzy & Bearcub Happy to help..
You ladies rock
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yes...done the ac...dozing on and off the last few hours...the girls at the clinic want me to put in a port..nurse today said i might only have 4 good veins...and 1 year of herceptin to go...
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Yay, yes Chemo over and done with. Funny but in the back of mind I still think I could be back there down the road some day as I met several people who are back. But I suspect this will dissipate and in a few weeks when Taxol wearing I will really feel like celebrating.
Thanks for the hot tub comment Tazzy as I was not sure it was forever.
Bearcub, I will look for the compress recipe!
Marian
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marain and pands: doing the happy dance for you both.
Have a nice day ladies
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Tazzy how long a wait after rads for the okay for the hot tub?
Yeah Pands Ac done!
Marian, because I still get herceptin in the chemo room until November it doesn't really feel like I am done chemo. I guess it is still my security blanket. Lets pray we don't end up back with a reocurrance, but it is in the back of my mind too.
Ossa have a great day!
Ladies have a great Wednesday!0 -
bearcub: I finished rads on November 14... so a couple of months. My rad tech said mid-January but I thought I'd wait another couple of weeks so my RO could give me the OK. It was heavenly
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Tazzy's officially a Rads Grad!!! YAAY!!!
Ossa, isn't your fipple tatt on the 4th? It's the Cherry on Top girlfriend!!!
Marian & Bearcub, the worry will fade, just give yourself some time.
Cher, how are you doing???
How 'bout a LeftCoasters check in???0 -
She.. my tatt is scheduled for the 12th.. having second thought though think I might go to a tattoo artist instead.. A bc sister is having hers done today, I will check hers before deciding what to do... BTW she went to this nurse at eagle ridge hospital and got her tatts done.. She had lots of problems bled for 10 days and when scab fell of there were no tatts left.. Spoke to the nurse about this, she said she has done 150 tatts and only 3 has failed.. so decisions decisions..
Have a great day my friends
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left coaster checking in. Just having my bowl of oats for brekkie, then will get ready and head off out to work. Warmer today... snow melt starting...just hope it stays.
Happy Thursday ladies xx
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Ossa - I know my PS, Dr. Lennox, has a lady in his office that specifically does tattoo work. I haven't checked into her work yet so I can't vouch for it for but knowing how particular Lennox is about his work I think he'd only bring in someone of really good calibre. When I first thought about tatts down the road I immediately thought, 'screw the fact that it'll cost me out of pocket, I want it to look good so I'll go to a tattoo artist who is better at it.' But since working with Lennox I'd have to think that her work is probably good (again, still need to actually see her work)... and it would be covered. Maybe contact Lennox's office to check out her work and see if it's something that you may be interested in. Assuming the trip to Vancouver for the day would work for you.
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All good here. Walked 8 k yesterday afternoon with my son then went to yoga then did another 2 k with my son between hockey periods last night. Thanks to dexamethasone! Oh and I gained 5 pounds yesterday too also thanks to steroids. My son has done 19 Olympic triathlons this month and hopes to do about 200 this year while raising money for "Right to Play." He often asks me to walk with him for his "run" part and usually we do 5 k of it and he runs the rest but yesterday it was not raining and I felt good and still do! I added the link so you can see him! He needs to update too.
http://righttoplay.akaraisin.com/pledge/Participant/Home.aspx?seid=2962&mid=9&pid=1206565
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Hi, fellow Canadians, I see some of you are ready for the hot tub. Please be forwarded that a hot tub or a sauna or hot yoga brings protein rich lymph fluid to your surgery area, if you have had even one node out you are at risk for lymphedema in that case.
The docs will poo poo your concerns about lymphedema (LE)because they spend very little time in med school learning about your lymphatic system. They are in denial and as one of my surgeons said "you only get LE right away after your surgery" NOT TRUE. I got LE about 5 years after. My arm is not hugely swollen as some docs think it should be, but I do have pain with little swelling.
If you have had even one node out then that whole quadrant is a LE risk. I also have it in my back . I wear compression gloves,sleeves and tight compression shapers to keep from getting the swelling out of control. I also do special exercises for LE to drain the fluid from my arm. I don't take bp or needles in that node less arm. I avoid sunburn and bug bites. No heavy lifting.
Sorry for rambling and I don't want to scare you but I want you lovely ladies to be educated. Google stepup-speakout.org to learn more or come to our lymphedema thread here at BCO. We will answer any questions. We are a friendly bunch.
If you catch it early you can reverse it. yeah! if you leave it you will have a swollen mess that cannot be totally reversed and it costs money out your pocket. Province doesn't pay to care for it. It's not cheap.You may or may not ever get it but you will want to know the symptoms and watch yourself like a hawk.
Don't be afraid to bring it up to your surgeons and if they tell you like they told me " you'll never get it " be wary and stick to your guns and get educated. Don't let them make you feel stupid for asking like they did to me. I would rather have chemo all over than have LE. It is breast cancers little dirty secret.Take care.0 -
Hi Hugz.... my LE specialist told me that I would be ok in the hot tub if temp reduced to no more than 100 degrees and I only stayed in for a max of 20 minutes and continued to do my exercises daily. And not to be in it every day. I have been so fortunate that my docs are also very LE aware which I know that not all docs are - I am lucky. Just hoping that I can still live my life and have a hot tub a couple of times per week
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Tazzy. So glad you are keeping on top of LE. Yes, you can experiment with a hot tub, etc. and see where that takes you. Check to see if you feel lousy, swell, get heavy feeling in arm, sore, etc. during and after the soak. Ask your LEist if you should do MLD before the soak or after. This would help move the lymph fluid.
For instance when I go swimming I pop into the hot tub but only to my hips,upper trunk out. I may stay in 5 minutes.The goal is not to raise your body temp. because this increases protein rich fluid which our LE bodies cannot drain efficently. I did use the hosptal therapy pool for 45 min. of exercise but found that 87-92 or so degree was too warm and caused me to drink major water. I decided to forgo because LE people need to be really hydrated and I was defeating the purpose. Yes, I did drink tons of water during and after my pool session. Although I did not swell I refrained from using this heated type of pool.
That said, being in a normal temp. pool or water is the best for LE because it is like wearing a compression garment on your whole body. Don't go gung-ho but work your exercises up slowly. Your LEist can advise you because she knows your body.
If your LE therapist said you can hot tub then she knows your condition and what you can do. Still be very careful. If you have late stage LE (very swollen) I don't think I would go near a hot tub, sauna etc. I have a sauna at home and stay out. Too bad because it is so good for my sore back etc. drats!
You are so fortunate to have a Dr that understands LE, Those are keepers. I have tried to educate a few myself, to no avail. Can be frustrating.
Do pop over to the LYMPHEDEMA thread. This is where I learned so much more than my docs. The girls there go thru LE everyday and are very savvy.
If your LEist says to wear garments then do so. Also make sure she has the correct training. She needs to be certified in Lymphedema treatment.
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Does this mean we can't have hot baths either? Hot baths have been something I have always loved.
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Hugz... although I am not going to stop living I am not going to encourage LE either. I have lurked at the LE threads and yes, lots of wonderful info. It was actually my BS that first told me about LE and my RO also reiterated what my LE specialist said. I did wear a sleeve when flying as a precaution. I will ask her about whether to massage before or after... I've been doing a bit of both, but good question to ask.
That's why you have to love these boards... such great advice. Thanks
hugs to all xx
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LE talk - I've only just started to research this topic in the literature, but from what I've seen so far there is actually very little rigorous evidence supporting most of the guidelines provided to prevent LE. They seem to be based on physiological principles, but don't actually have the data to back them up. This said, I've seen a few research articles published in reputable peer reviewed journals that have shown a supporting benefit of exercise, when started cautiously and progressed gradually (as it should be no matter the case).
I'm not saying that things like wearing compression garments, avoiding BP and needles in the arm of concern, avoiding hot baths, etc. don't work, but I certainly can't find actual scientific evidence of this. If anybody has seen recent studies supporting many of the guidelines given by the medical community, please point me towards them. I have a feeling though that this is something that is seriously lacking in research with sound study design.
I'm not trying to make waves... I'm all for preventing and reducing LE. I would just like to know if there is actual scientific evidence supporting the typical guidelines put out there. I can't find much and I'm not the type of person who puts much faith in anecdotal evidence. Hopefully more work will be done in this field if it's truly as under-researched as I fear it is.
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I developed truncal LE almost immediately, didn't have a clue what it was. There wasn't a lot of info available 16+ years ago. After 11 years of beating the crapp out of my arm and doing "everything" wrong including hot tubs and saunas, and I got LE in my arm. It wasn't too bad until 2009 when I had BMX/DIEP and had an IV in for 5 days. It's been swollen ever since. My other arm (bilateral BC) is fine.
I wear sleeves/gauntlets when I fly, and I fly long haul frequently. I've had a lot of discomfort and swelling in the tropics. I was without AC half of last month (+32) and it was too hot/humid to wear sleeves. I started swimming several times a week and my LE arm is doing really well with only a little discomfort and minor swelling. Not going to wear sleeves any more except to fly.0 -
I have developed LE in my right hand/arm (hand quite swollen arm just slightly) I have been wrapping my forearm/hand the past few days. LE therapist in Abbotsford is on mat leave so there is a lady coming once a week from North Van,, hence | cant get in until Feb 22.. I had cording (again) a few weeks ago and I believe that is what triggered my LE
We are flying March 6 so hoping swelling is under control as well as have my sleeve in place by then.. Cant get fitted for a sleeve until swelling is under control...Had a consultation with a tattoo artist yesterday.. she said my new nipple will be easy to do . look forward to a 3D nipp...
Today I am going for my (half) mammogram.. First one since my reduction....
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Ossa: good luck with the LE specialist and hope you get everything in place in time. Congrats on the 3D fip. How did the mammo go?
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I really thought about the 3dflips. I hear they are really nice. So far I don't have anything lined up, I can't make up my mind.
Marianeliz. Anything that raises body temp you should be wary of. For my hot baths, I make them cooler and lay on my non le side. Yah its a bummer but this seems to work for me. You gotta live to enjoy life for sure and I do like a candle bath.
Taz. We should all try to have an enjoyable life. I won't let BC/LE snuff me out completely. I will go down kicking if I have to.
A person can tailor make their activities, One girl with LE races bikes, after she takes good care of her arm if it flares, sometimes wrapping. You are so fortunate to have savvy docs. Mine actually had a hearty laugh when I told him about my LE risks. I do love all the boards here too. I would probably be lost without them.Sneaky, There are not alot of LE studies because it is hard to get LE human trials for one thing. For instance if they ran a LE study for risk of LE in flying, they would have to get people with LE garments and people without and stick them on a plane and see if they get LE. I sure am not going to line up for that. There are also so many variables. We have a lot of discussions on studies on the LE thread. Some girls are pro with their research and have many links posted. I am not well versed in the studies. You are dead on about exercise. It can be done gradually. I believe it was the PAL study from university of Penn that studied this with success. I think they start you out just lifting your own body parts and then gradually 1lb weights. If you quit for a few days you have to reduce the weight. A couple girls have done it and now they are able to lift there grandkids safely. I have not done it and if I was to suddenly lift a kid now it would put to much strain on my lymphatic system and would draw fluid to the area. Don't know if I could get away with it but I would rather abstain. Many of you can do anything and not be affected. How nice.
She. LE can sometimes start out with very subtle symptoms. These are called subclinical and normally you wouldn't be diagnosed unless you bring it to your docs attention. He may brush you off. A limb or area that presents heavy or tingly or sore is a clue. For instance for a few years before I wore sleeves/gloves I would get a tired arm gardening. The other arm wasn't tired on the no node taken surgery side. This woke me up and I was proactive. I would come in and elevate my arm for 20 min then go back out. Your right, not much info out there on LE but more people know about it than 15 years ago. Younger ones are more on top of it. I shake my head when I go into rest homes and see all those old gals with swollen arms. I can pick out a BC girl easily but their docs just don't get it. Good news though, we have a LE awareness day coming up in March I believe in BC. You likely won't see it in the headlines though.
When you fly, if you decide on a sleeve with a gauntlet or gloves, put it on about a hour before flight and keep it on until about a hour after. Those are loose guidelines. Have you ever seen a waterbottle with a cap on in flight. It usually blows up due to cabin pressure. That is why it is so hard on our lymphless area. My personal decision would be to wear a sleeve, but everyone differs. Again studies are sketchy.
Yah, heat is a bummer, 32Plus would drive me nuts in hot LE garments. If you get major pool time, walkiing in, over the shoulder depth, that would be so helpful. Even submerged over the shoulder is good. I so want a deep salt water therapy pool installed in my home, Big dream
Ossa, Great that your wrapping and even smarter wanting to finish therapy before you buy a garments.There are some great threads on cording that can be helpful. You can also go onto the DR. Vodder website where there are a list of qualified LE therpists if you need care before that Feb 22? date.Take your wraps with you(not stowed under the plane) and a precautionary antibiotic such as Keeflex if you are in a country that has limited medical care just incase you get a flare or a bug bite that gets out of control. I don't want LE to wreck your trip. If your docs snubs you on the prescrip.tell him that you don't want to risk cellulits on your trip. If he declines then go to a walkin clinic to get it.
If any of you are away from home and are stuck with a LE problem we regularly check the LE threads and will come on board to help you.
Sorry for big post my fellow British columbians.
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Had five mammos on one side... They said it was because of scartissue from my reduction... hmmm do I believe them or not.. two loooong weeks to wait until I get the answer
Then was officially told I have LE today
Got my sleeve and glove. ugh... upside I now only have one flabby arm as the sleeve gives my arm a nice shape
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Ossa, Oh the waiting game will drive you crazy. It would be a good idea to drag out anything that has chocolate in it and feast without guilt.
Yah, it's true, you usually can find something good out of something bad, You will have a more shapely arm! Too cute!
I looks like your arm must be in control if they decided to give you a sleeve already. try only wearing it a few hours at a time. You want to build up to it. If your inner elbow gets sore then put some cornstarch into a toe of a sock with a rubber band to hold and pat it on your inner elbow. Hopefully your inner elbows won't be too sensitive. I also use a anti chaf product called either glide or BodyGlide. You can get it at a running store. you really want to get use to the sleeve ASAP so do wear it before your trip.
Make sure your garments have no binding that leaves a deep marks or no bubbly fabric that wrinkles. See stepout-speakout.org to view proper fitting garments. It must fit well.
I feel sad that you have joined the SWELL group but am glad that you are educating yourself. Knowledge is power.0 -
Thx Hugz, I was dx with LE years ago, and was managing pretty well with manual drainage until my sx in '09. Bilateral DIEP messed with my abdominal drainage path and I think the current relief is due to both exercise and diligence in trying to develop new drainage paths. After my stage 2 revision at UBC I ended up in my local hospital and had a "generalist" who looked at my foot IV and said I'd better get it out as I would throw a clot and die. Then he said LE is a myth. I told the guy to go back from whence he came and dispense aspirin because that was all he was qualified to do. Then I discharged myself. ( I've paid my dues, 32 cancer years crammed into 16.5 life years, I don't suffer fools any more.) Which reminds me lol, this month is 12th cancerversary for BC #2!
I'm on the other side of the world so wish you well with the LE awareness day. Please carry a sign on my behalf:
"MSP decision makers - do you have 1 pair of panties you wash every night? LE sleeves are the same as underwear, we need to change daily so how about some realistic coverage!!!"0 -
Ossa, waiting with you. Mammo time is stressful after BC, time helps, but doesn't totally wipe out the trepidation. Eat plenty of chocolate and have a wine chaser or two..... And fipple day is coming up! More celebratin!!!!
Don't forget to put your sleeve on at least an hour before your flights next month. And if your layovers are less than an hour keep that sleeve on! I try to keep mine on for 2 hours after flights, seems to work better for me, but we're all different - you'll figure out what works best for you. Sometimes the need for a shower at Schipol overrides my sleeve time rule lol.0 -
Ossa, I am just like you, I hang on to every word and wonder what did he/ she mean by that?...I am sure your mammogram will come back fine, anxiety, thanks BC for that. Positive vibes being sent your way.
I was told yesterday that I will have my first mammogram in 3 months and it is already on my mind. I am definitely planning a vacation for before that! It really is hard to trust your body now that it has betrayed you once already.0 -
ossa and bearcub ...had my first mammomgram after surgery (sept) on the 15th of january ...went to my GP in november ..whom is great and said...look..its been 6 months since my fisrt mammo (june) which found my cancer...i would like one now..so she said ok....by the way...came back negative she told me the results next day...i told her i have to be proactive about this not reactive....
now just waiting to get port put in....wait wait wait.....
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Re: waiting game and such. It can be so frustrating waiting for those tests. I think the worst is when they say there are no more cancer survaillence tests available to you.
If they can put man on the moon why can't they find a test for us? The only solution to the waiting game is EAT CHOCOLATE!0 -
Hi Ladies, just found this thread yesterday and wanted to say hi to everyone. Found this site last nov and spent majority of my time on the Nov 2012 surgeries thread. Have been reading the last couple of pages and there's been so much good info so thank you so much for sharing. I'm at the stage now where LE prevention has been on my mind. I've been trying to do some research and will be lurking on the LE thread to see what I can discover there. I'm dismayed to hear that hot yoga could bring on LE. I was so looking forward to starting that up again when I got my full range of motion back but now I have to rethink everything. My MO has sent in a requisition for me to have a mammogram and I too am nervous looking forward. So much has changed in just 1 year.
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Hi everyone. I have been lurking for a few days and finally signed up. I was dxd late Oct 2012 with local advanced ductal BC in left breast. Both est and prog recepters are +3, strong positive - normal, according to MO. HER2 is negative. MO is Dr. Ashley Davidson at the agency in surrey. Was originally to do four rounds of AC then 12 weekly rounds of T to shrink the tumor. then surgery, then radiation. Well CT scans have now shown Mets in my spine and likely 1 in my lung. Treatment has now changed to 2 more AC treatments for a total of 6, then est. Inhibitor and bone strengther. Surgery and chemo will be saved for down the road when its really needed. I don't know which ones yet. Needless to say my husband and I are scared even though my MO says I have a few years left yet. Just looking for support and knowledge.
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