TRIPLE POSITIVE GROUP
Comments
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As far as "friends" go......
I had my last herceptin on a Friday, had my port removed the following Wednesday, Thursday was Thanksgiving. My port area (or deport area) was aching towards the end of Thanksgiving night. We ended up going to a friend's house for dinner. I made 4 pies that morning, got there at 1pm and by 8pm my port area was throbbing so much I wanted to go home. I had done very good! The next day (Friday) was a friends 40th party. I am very close to her, she has helped me so much through all this cancer stuff and I love her dearly so there was no way I was going to pull a "no show" I decided to go and just stay for a little bit. I ended up staying about 1 1/2 hours (they stayed there dancing till 2am)
The next day I get an email from a a so called "Friend" (not the birthday girl) which told me how insensitive I was. Why did I even bother showing up if I wasn't going to stay. Other people were there and not feeling good. Someone else there even stayed till the wee hours of the morning and she had a sinus infection so what was wrong with me. Said how disappointed she was in me, using excuses when I had no intentions on staying in the first place etc. Bunch of cussing in there too.Needless to say. This person is not considered one of my friends anymore.
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Sue....congrats on the new Grandbaby!
Oh and I am glad you jennifer and lago mentioned the ACS. They helped me so much with information, my first wig etc.
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Lago - I'm dreading the next MRI as they found some tiny microcalcifications on my mammo in April - they didn't deem it necessary to biopsy, but I'm still worried.
Hope you win the lottery!!! We go in a weekly ticket at work and I've given up even checking the results.
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Hey Susie...good to see ya mate
Glad your hair is rocking again ... woot!0 -
I started a thread on the chemo forum called - "Hope for those blessed with chemo curls". The treatment is a non chemical Brazillian Keratin thing called Cacau - it compresses the hair - I have been on cloud nine ever since I had it done. My hair is quite long now, hard to believe I lost it. It's supposed to last 4 months, but I'm nealry at that point and it isn't showing any sign of deterioration. It was well worth the expense - best dollars I ever spent in my life I think
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susie - yay for the new grandchild! I am sure you miss your children and grands - I don't get to see my son often but will be spending a week with him, starting Sunday, when I fly up for the start of my Her2+ vaccine trial.
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Nora: Im not surprised you are no longer friends. When situations like this occur I take some comfort in feeling morally superior. Anyone who takes the time to deliver abuse (and swear words) to another via e mail, text or mouth is unworthy of our time and consideration. I kept the text my "karma friend" sent me and now and again I re read it. Everytime it makes me feel better because I know that I would never behave in that way. Secondly, isnt it interesting how some people have all the guts in the world to attack us from a distance e.g by e mail. It would be a different story if they were standing in front of us. Thirdly, (oh no I'm on one now!) How ridiculous to compare one person's discomfort (the sinus lady) with yours. The very fact that you attended social events that weekend was a minor miracle in my opinion. I didnt have a port but I have heard how painful the removal proceedure can be and anyway there is also the emotional/psychological side of dealing with this. As I said: take the moral high ground and move on.
Will post a pic of my car if it stops raining long enough. I hope Olympic Games visitors bring their waterproofs. There's a reason why England is a "green and pleasant land" William Blake.
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I know this has been asked on here somewhere but can't find it - I don't have lymphedema, but did have a SNB last august. Im taking a short plane trip (less than 2 hours each way). Is a sleeve needed to prevent Lymphedema even on such a short trip? I will ask my BS on Monday, but if its needed, is it pretty quick to get one? My trip is 8-1. Thanks!
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I'm also travelling tomorrow actually and I had my NSBMX with 1-step to implants and SNB done 10 weeks ago, I asked my oncoplastic surgeon about the risks of lymphedema as well (I don't have it) and he told me no. He said since its only a very minor cut and he took out 2 nodes in total, the risk is extremely rare and I don't need a sleeve. So I'm crossing my fingers for tomorrow.
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I was told under (I think it was 12) nodes taken out it should not be an issue. Any over that you should have a fitted sleeve for flights over 3 hours.
This was told to me at my PT appointment at the Mayo when they were discussing lymphodema. If you already have it then you should wear one on the flight regardless.
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You are so right Jack. I kept my email too. Did the torch go by where you're at? I have a few friends in England. My dear friend is in Addlestone. Spent a bit of time in Pinner as well. I love it over there.
The friend who lives in Addlestone works for UK Border control at Heathrow. They aren't allowed to take ANY time off during the Olympics. She said it's crazy there at Heathrow (well crazier than usual). I can only imagine.
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newsflash ladies - there are those among us on this site who only had a SNB who now have lymphedema. It does not matter how many nodes, whether you are thin or not, what kind of surgery you had, etc. - you are at risk for LE if you had a single node out. Here is the air travel precaution sheet from Step Up, Speak Out, as well as the general precautions:
http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm
It is doubtful that you could get a properly fitted sleeve in a short period of time. Mine required a written prescription and instructions from my LE PT, I had to be measured, sleeves/gauntlets ordered. It took a couple of weeks. If you could find a medical device company that has sleeves in stock that fit you properly and can be obtained without a prescription it might be possible - but also be warned - my two sleeves and gauntlets were $250, and they are not custom.
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Sleeves for flying
• It's actually controversial. First of all I had 10 nodes on one side, 4 on the other. No radiation. I have LE on the 10 node side and wear a sleeve. On a plane I wear on both.
• Last time I flew I wore both on the way up. Didn't wear it on the 4 node side home… and I felt a little heaviness.
• I also did have cording on the 4 node side after BMX.
• My mom and her uncle has/had LE in their legs (not from surgery). They are finding that family history is an issue.
• 12 nodes for one women can mean a different thing for another woman. Some women have a lot of nodes and some less. If you take 12 nodes from women A who has few nodes than woman B the risk is higher for woman A.
• I have a friend here that more had nodes removed and had rads. She does not have LE and has flewn on short trips with no sleeve and has no problems. We were treated about the same time.
There is some information on studies halfway down this page. Still seems inconclusive.
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Just catching up with posts as I've been off line for a couple of days.
Welcome Jennifer. As already affirmed....this group of ladies are great support, smart AND compassionate.
Lago you ALWAYS make me laugh out loud! I'm going to practice the "4.5 days" line to keep in my arsenol....don't think I have the guts to do the "time's up" drop....although I LAUGH out loud everytime I imagine it!
As most of you know, I was not given an option of chemo/Herceptin due to my 3mm IDC (and "old" age of 57)....so I'm just on Tamoxifen right now.....I've noticed my nails and hair have been thrashed and started taking Biotin and recently started BioSil. Today I've noticed that my thumb nails are lifting (the whites are jagged and moving up the nail bed). Could this be the Tamoxifen? or????
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Chachamom go see a dermatologist. This could be a yeast infection. If it is, that stuff that my dermo wanted me to use that cost $180 a month should be covered by your insurance. Otherwise you might ask your onc to prescribe the horse pee (called Urea, at costco is $26 a month). Although my nails are still lifted from chemo I have noticed that they have flattened out a bit and don't looks so strange anymore since using the horse pee.0
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Wow - I never worried about flying before. I guess the 24 hour trip to the UK last year proved it wasn't a problem for me. I don't remember any discomfort at all. Wish I'd known about it before though.
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Lago, isn't it sad when horse pee is a highlight of our treatment?!? LOL
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Don't they use pregnant mare's urine to make Premarin????
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Nora: Yes I saw the torch relay. It was incredibly emotional because Ben Parkinson carried it for 300 yards through my home town (Doncaster, Yorkshire) He was critically injured in Afghanistan, but has learnt to walk again. This man is truly inspirational; a real example of the human spirit overcoming adversity against terrible injuries.
My 9 year old is very excited because he is due to visit her school on Monday. Glad you enjoyed your visits here. Most folks outside of London are happy to stay away until the Games are over. My DH and I usually visit London in the Summer but we are postponing it this year. The hotel prices will drop significantly when its all over.
Lymphedema: I have just joined a gym and started weights. Is this safe?
Liz
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Megs986, first time i was her2nue+++, my SO ordered a FISH which turned out way below the positive value, so he told me i was now her2 neg. Then the MO ordered a repeat her2 testing, which again yielded +++. I am now being treated as her2 positive. For me, better safe than sorry. Tho i dont know for sure which is.
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Liz, I fly without a sleeve. I was told a sleeve can cause LE ...so please check with your local specialist. Also, last time I flew with a BC flight attendant, axilla dissection. She doesn't wear a sleeve at all because she was told not to wear it unless she had swelling, so she had one fitted and carries it with her.
I fly and lift weights, 4 SNs removed. No problems. Re: weights, start slow, low and build up. But again, your LE specialist will be a good resource.
Frankly I find the information on this LE thing to be contradictory at times. So I just wing it. If I start to have swelling I will go see a specialist again to be fitted....
Having said all that....lol, I leave this morning for TX with TE swap on Tuesday. I've read that the surgery can give me LE as well....so there ya go...
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Hi Tonlee
Thanks for advice. I am definitely starting slowly. I am concentrating on cv machines first. I used to do one hour of cv interval training, but having just started back im struggling to make 15!
I hope your swap goes ok.
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largo...horse pee has a lot of estrogen in it. This is what's used for premarian and probably what caused my bc.
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jackboo I have LE and do strength training although not like Tonlee. You need to work up gradually like Tonlee says. If you notice any heaviness, fullness or swelling then stop and give your arm a rest for a day. Studies have shown that exercise/strength training is actually a good thing for LE as long as you don't rush into it.
________________________________________________________________---Learn about exercise and lymphedema:
Exercise is a key component of lymphedema therapy and all patients are encouraged to exercise. Patients with lymphedema or at risk for it, should not exercise their upper extremities to the point of fatigue and need to monitor their arms for swelling or discomfort after exercise. There are far too many cases of anecdotal reports of women developing lymphedema in exercise programs designed for cancer survivors, using exercise trainers who are unaware of lymphedema precautions or even with standard physical therapy. Resistive exercise, despite recent studies, can pose a risk to women both with lymphedema and at risk for it. From the NLN position paper on exercise-http://www.lymphnet.org/pdfDocs/nlnexercise.pdf:"Studies: Resistive exercise has been formally studied in "at risk" individuals, and when begun at a low level and increased gradually, has not been found to trigger or worsen lymphedema. An isolated study in lymphedema patients suggests that resistive exercise, in the absence of compression, may lead to increased lymph accumulation and eventually worsen limb swelling. Potential Benefits: Resistive exercise may enhance lymph flow and prevent limb swelling from muscle overuse. Potential Risks: Strength training increases local blood flow and metabolic waste production. These effects increase the demand on the lymphatic system, potentially triggering or worsening limb swelling."
In carefully selected patients, who participated in a specific exercise protocol, (PAL protocol), utilizing specially trained trainers and frequent assessment by trained lymphedema therapists, in this highly controlled setting, weight-lifting was shown to do little or no harm to patients with lymphedema and at risk patients, Schmitz et al-but weight-lifting does not cure nor definitively prevent lymphedema, and needs to be done slowly and carefully. Read the articles, not the press releases.
The initial article on weight lifting with the PAL protocol for women with lymphedema is a free article on pubmed: http://www.nejm.org/doi/full/10.1056/NEJMoa0810118
The second article reviewed use of the protocol with women "at risk" for lymphedema:
http://www.ncbi.nlm.nih.gov/pubmed/21148134http://www.abstracts2view.com/sabcs10/view.php?nu=SABCS10L_9027
"Slowly progressive weight-lifting had no significant impact on arm swelling among breast cancer survivors with lymphedema, and resulted in a reduced incidence of lymphedema flares and improvement in symptoms. In breast cancer survivors at risk for lymphedema, a program of slowly progressive weight-lifting, compared with no intervention, did not result in increased incidence of lymphedema. In secondary analyses, women with 5+ nodes removed who did weight-lifting were less likely to experience increases in arm swelling."
Unfortunately, on the official University of Pennsylvania PAL site: http://www.penncancer.org/physical-activity-and-lymphedema This statement will be found: "Several key findings from the study include: 50% reduction of the likelihood of lymphedema worsening among women with lymphedema 70% reduction of the likelihood of arm swelling increases among women who had 5 or more lymph nodes removed"
Please know the facts and limitations of the study. Weight lifting does not cure or prevent lymphedema, and can precipitate it in some women. Read the NLN guidelines and counsel your patients with the facts.
source (2/3 down the page): linky_________________________________________________________________
Tonlee I never had LE swelling or increased after any of my surgeries. Actually the only swelling I did get was after my BMX but I didn't have LE then and it was bilateral arm swelling. Actually my entire upper torso was swollen. I did notice some heaviness during workouts later on but I believe I had already started chemo. It wasn't truly noticeable till after TX4
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My arm is still numb in the back from them taking out the lymph nodes. From the armpit to nearly my elbow! I wonder if I will ever get the feeling back in it. It's kinda weird. So far I have had no signs of LE. THANKFULLY!
Jack....my profile piccy...is 2 months before diagnosis my husband and I had just landed at Heathrow and my friend took us to a pub on the Thames for lunch. It was a gorgeous sunny day when we landed. I hear you need a few more of those now.
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eve - all horse pee does not have estrogen, only from female horses, and the drug you most likely took was from pregnant female horses - I assume the drug was Premarin, which is Pre - pregnant, Mar - mare, In - urine - pregnant mare urine.0
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Hi all - I have been reading the past few days and keeping up with everyone. Just popping on to wish TonLee safe travels and good luck with surgery on Tuesday!
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jackboo....if you have never been to an Olympic games, you should splurge if you have the funds and go to a couple of events. It is really fabulous. On my bucket list would be going to an opening ceremonies.
I worked for twelve years at the Sports Corporation in Indianapolis. We worked to bring events into town including Olympic Trials, Final Fours, etc. One of the events we organized was when the Torch Relay came through the city. You are right. It is so moving. Every person has a great story.
The athletes are amazing and it is so neat to see them. During the Atlanta games, we went to the gold medal baseball game, a track and field event, and swimming. My kids have met so many medalists and pro players. I was considered a cool mom because I had some access. lol
Special K...hope all is going ok for you on your first trial vaccination. I just finished number 4. The injection site was pretty itchy on day 2 and three this time, but has lessened considerably.
My son tore his acl and is having surgery tomorrow, so I may be away for a good part of this week. Or, I will be on all the time to vent that he is driving me crazy. He is a terrible patient...very crabby.
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fluff - thanks! Sorry to hear about your son. DH had arthroscopic knee surgery - didn't take him long to bouce back, hope the same for your DS. I am a little nervous for tomorrow morning, partly because I have to drive in Washington, DC - I am currently typing this from the inflatable bed in the living room at the apartment of my DS!
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