Calling all TNs
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Hello everyone! I've been super busy with the holidays, radiation and working. I have 9 rads treatments left. Thank goodness! The skin on my collar bone area is all red and rashy - yuck!
I got some bad news recently about a couple girls that are triple negative. One of the girls went to my onco's office and passed away on Dec 15th. She was 39 years old... so young. My friend's cousin is also TN and her bc has spread pretty bad. She is also young. I HATE CANCER!!! My friend who is stage 4 with tnbc got on Taxol and Avastin. She's been feeling sick, but has been feeling a little better. I hope this chemo regimen does the trick. Please keep her in your thoughts and prayers!!!
I was reading through some of the posts this month and was surprised that so many gals are complaining about pain in the joints, particularly in the knees. I've been having pain in my right knee. I was going to mention it tomorrow to the rad onco (I see her once a week). I bet a lot of us are having pain because of the cold weather and perhaps being on such lovely drugs like Taxol. I've always had bad knees from dance injuries when I was a teenager. Plus, I climb in and out of my husband's truck a lot and it's lifted (so I'm coming down on the right leg). Hopefully it's nothing.
On a positive note, I am going to do my first speech for Susan G Komen this Tuesday. I signed up for their Speaker's Bureau last year, but got dx with bc right afterward. I am really excited about it and hope to bring bc awareness and have people pay closer attention to their breasts and health!
I need to get on a health kick. I've been eating crappy food and not exercising. My dh got me a couple Wii games (Zumba and dance). I know it's super important to be more healthy, esp with the tnbc dx.
Happy Holidays everyone!!!
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HeidiToo - I used the Penguin Cold Caps and kept my hair. Since Taxoterre has an estimated 6-13% permanent baldness rate, a person can't assume that her hair will automatically grow back. And the clinical studies found that scalp mets are not anymore like likely for women who use the cold caps (a therapy that has been available in Europe for years). There is a very active Cold Cap Users thread on this site.
Colleen
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lr4993 - thanks so much for the info...I've been taking centrium women and my onc said to take one of these a day during chemo.
Glad to hear that you were able to work. I plan on taking Thursday(chemo day) and Friday off and going back on Monday. I'll just wait and see!
Any other TN's use cold caps? My onc said that it is like freezing your head...how long did you wear this?
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thanks everybody for the (((((hugs))))) and right back atcha. I am trying very hard not to bum out about the lumps, I am pretty sure that one of them is fat, but not so sure about the other one. I will try and leave the worry until I find out for sure. I had a great day yesterday with my daughter and her family and also went to visit my doggie friend. Her "frenchie" had 7 puppies and they are 6 weeks old... just tooooo cute. Nothing like puppies to make you smile.
I finished TC in Sept. and still have pain in my knees and hands. The cold bothers my fingertips and toes. I was told by onc. that these SE's may last awhile, but they will eventually pass.
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Today:
90 minutes of prep for 20 minutes of sleighing. Horse got cold. Oh well.
Seriously, I was dressed up like an Eskimo but my horse wasn't. His quarter sheet kept blowing up on him and that boy was COLD. How do you spell W-I-N-D-Y (wind chill @ 15 degrees).
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beautiful picture
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First day back at the Gym!! Half hour of cardio 10 minutes of free weights, and cutting out most sugars to stay fit. Thanks for all your ideas, knowledge and input. I have two Abraxane treatments left and just found chemocare website, looking for a lx-mx site now. Any ideas?
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I wish I could keep up with this thread and get to know people - its so busy!
I'm getting geared up to start chemo.. I get my port in on Wednesday then the first treatment Thursday.
It's super cold and windy here in PA.. got a couple new hats for Christmas but they both need to go back for exchange - not relishing being bald in mid-winter.. but so ready to get treatment underway and hopefully see this evil lump shrink and shrivel.
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mommafluff - just an fyi based on my experience - the day after chemo I was fine. It was weird. I did my treatments on tuesdays and was perfectly fine until saturdays, which were my bad days. I took the whole week off after my first infusion because I had no idea what to expect . . .lol. Turns out I could have worked straight thru, which I did for the others. Like you said, just wait and see. You may want to adjust your "days off" plan once you have a feel for what your side effects will be.
Good luck! I hope it goes well for you. I was completely terrified of chemo but ended up having a surprisingly easy time with it. I am now more scared of radiation, which I start in january.
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I did chemo on Wednesday and started to feel bad around Friday afternoon. I worked through chemo. I was able to work from home on my bad days and saw customers on my good days!
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B-4 I took chemo a friend of mine told me about the "day after the day after"...I had chemo on Wednesday..felt fine..felt fine on Thursday..then Friday's it hit...bone pain and just a feeling of the flu....I hated that I felt like crap on Fridays! I just forced myself to go to bed early and felt ok the next day..toward the end of my treatment though..I thought dang it...and I forced myself to go out to eat or at least do something...it seemed to help...
Beautiful Heidi!
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mommafluff61 - I'm TN and I used cold caps last summer. The length of time you wear the caps is based on chemo type and infusion time, as well as the type of hair you have. In my specific case, I have shoulder length hair that is moderately thick and wavy. My chemo was TC. My cold caps were frozen to -31 degrees C and I wore them during and then 4 hours after chemo infusion. You wear one cap for about 30 min and then switch it out for a new cold caps. The caps are rented from Medical Specialities of California --- which is located in London, England. There is a Cold Cap thread on this site. Or you can Google "Penguin Cold Caps" and find the company's web site.
Colleen
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Man, talk about an ice cream headache! Nobody has a problem with their brain freezing? My brain is tiny, so I guess I would have been OK.
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HeidiToo: What a gorgeous, though cold brrrrr, picture of you with your horse. Just beautiful!
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mommafluff,
I am taking Centrum Ultra Women's. My chemos are usually Friday - I thought I'd 'recover' over the weekend and be Suzy-Martyr by showing up Monday morning. Big mistake. After my first TC infusion on Dec. 3, I went to workon Dec. 6-7. Dec. 6 was non-stop bone pain. I was shocked. Dec. 7 was bone plus soft tissue pain. I wept IN THE OFFICE both days. I had to make an emergency trip to the Cancer Center on the 8th at which time they gave me prescriptions for oxycodon and Ativan. TG, TG. Everything improved until I was literally pain-free (not counting mouth ulcer the cracked fingers) on Dec. 19-21. Then, back to the disgusting pre-infusion Decadron, and learnin that the WBC didn't come up and I'd have to have Neulasta on the 24th - 24 hours after the second infusion. For Nuelasta bone pain (in my case, low-grade, continuous) I'm taking 4 200mg-each Advils at the suggestion of the Onc-on-call who administered the Neulasta shot on the holiday.
All the best... ChrissyMH
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Good Day fellow TN Friends!
SPORTY99...
we both start chemo this Thursday...I'll be thinking of you! We can compare notes when we are done...
CHRISSYMH...
Thanks for the vitamin info...I have chemo this Thursday and an appt with the onc on Monday. I'll try not to be a Suzy-Martyr
I kept kicking around the idea of the cold caps but I just can't imagine being "that cold" for so long! I'd have a huge brain freeze!
I've got a great boss who just wants me to "get well" so if I'm too tired or have pain I guess I'll just stay home.
Any input from you guys about my doc not giving me a Neulasta shot after chemo...he seems to think I won't need it? Let's hope so!
What did you bring with you to chemo that you couldn't have done without?
Have a GREAT DAY!!!
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What I brought to chemo:
my laptop
my pillow
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On my very first chemo day I took my laptop (I read they had wifi), a book to read and a sudoku book. I had no idea how long I would be there and wanted to be prepared. What did I do? Nothing!!! Didn't get out my laptop, just barely started a sudoku and read zero pages. Our chemo room was tiny and there was so much going on - new patients coming and going, nurses bringing new infusion bags, IVs beeping and people to talk to. As a seasoned patient, I now ALWAYS take a book to whatever kind of appointment it is, but certainly didn't need much for chemo.
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What I brought to chemo:
my laptop
my husband
Both were incredibly entertaining.
I never got a Neulasta shot; my counts never warranted it. I found CT quite tolerable and it never affected my ability to do anything. Good luck ladies!
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Physical activity and breast cancer outcome: A brief review of evidence, current practice and future direction
Abstract
There have been several publications of large scale studies with long-term follow up addressing the role of physical activity in the management of breast cancer. Of the twelve studies specifically addressing the effect of physical activity on breast cancer survival, eight showed a statistically significant 50% risk reduction in breast cancer mortality in women who engaged in moderate intensity physical activity before and after their diagnosis of breast cancer. Four smaller studies demonstrated no benefit. Almost all of these observational studies predominantly involved white, professional women from North America and Europe. The positive effects of physical activity were seen for all stages of cancer, with the greatest benefit in steroid receptor positive breast tumours. These studies relied on self-reported questionnaires for recording the levels of physical activity. Despite including thousands of patients, published studies offer no data related to the optimum type, duration and timing of physical activity. Only a few studies provided objective data on physical activity, cardio-respiratory and general fitness. Thus, potential role of physical activity in the management of breast cancer remains far from established. If the beneficial effect of physical activity as demonstrated in the observational studies can be replicated in robust, well designed and well-executed prospective randomised controlled trials, this would provide a tremendous opportunity to enhance adjuvant treatment of breast cancer. By adding physical activity to the spectrum of adjuvant therapies offered to women survival from breast cancer may be enhanced.
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I "sleighed" myself again today. Weather was much more cooperative (read NO 40 mph winds).
Have decided to have a New Year's resolution: lose 10 pounds. OK, I've said it. Now maybe I can do it?
Anyone want to join me?
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HeidiToo...
you rocked your chemo! AND I'm in on losing pounds...lots of them! Starting Jan. 1! Already dropped 5 due to stress!
I visited the place where I will receive chemo...gorgeous views, great staff...I will also bring my entourage of girlfriends! You can bet we'll be laughing!
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Count me in Heidi! 10 lbs..I'm there!
What I brought to chemo:
Husband, books, crosswords, water, crackers, potato chips...my husband got us lunch. (no wonder I'm fat)
We had a private room most of the time...didn't read much..talked alot because I was energized by the pre-drugs...watched the Price is Right...what a stupid show...did you ever notice that the women who are chosen usually have big boobs and they flop around the whole way down the aisle?
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Heidi - I'll join you! I need to lose more than 10, but 10 would be a good start. I have beem planning to get fit for the last 5 years but have made zero progress. Nothing like a cancer diagnosis for motivation - it made me realize I've been a bit in denial about the fact that I'm aging (47) and need to prioritize my own health care - my kids make every well check, are current on all vaccines, etc. I didn't even have a primary care doctor! Still don't but it's on my 'to do' list. So, I'm game.
I started the day with a long walk - woke up at 2 (first day after chemo - I think it's the steroids) gave up at 4 and got up. Drove the car over to the shop to drop it off for a tune up and brought the dog along. SHe and I had a lovely leisurely few mile walk home and saw a beautiful sunrise. It wasn't very aerobic but it was a start.
I started a log in my chemo notebook of activity and food....having an enoumous slice of pizza for lunch so perhaps could have made a better choice there....
Donna
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Chemo: I would tune in to our favorite programs and watch the latest episode(s) that we had usually missed the night before due to having to get up early and drive to chemo. I had mine on Monday's figuring I'd need the week to feel better by the weekend.I really hate going past that place now, regardless of how nice the people were, etc. It's just one LOUSY reminder of how my life got out of control. Surreal. My son lives in proximity to it though, so I'd visit him after infusions and 3 month checks.
Diet: a few years ago when I dropped to 122 I did it by eating sensibly and watching caloric intake (had never done that before in my life). Now I will concentrate on portion control, since hubby loves to cook and is always feeding me too much. Luckily I have regained most of my pre-cancer tx energy so I'm back to mucking stalls and other ADLs (activity of daily living).
Pizza: actually not too bad a choice if you stick to the basic and don't go overboard on toppings.
Chocolate: it's hopeless. So, I make sure I've earned it. No one ever lasts on any diet of total deprivation, so remember to cut yourself some slack once in awhile!
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I'm in for 10 pounds. I am planning on having a DIEP flap reconstruction, so I don't want to lose too much, but I'm sure 10 lbs. won't even show....
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Another chemo story.
Had a friend with me..we were sharing a room with this old man..my friend and I were talking..she got me Wendy's.(why I am fat)..
.the old guy goes I GET THE REMOTE! I just laughed...said it was just like at home...you know how our guys like their remote...
Anyway..to you ladies going through chemo and just starting...it really isn't that bad..yes.a pain in the ((**8..but you can do it...I had very good care..met a few friends..it really was doable...
My Mom was OK with it..my Dad..not so much..so I had them stop up too..I just wanted them to see the reality of the chemo...I think that they were surprised some that their "little girl" was handling this pretty well...I was just sitting there in a recliner with an IV..talking and eating (did I say I was fat?)....I'm glad that they came to see me there...I think that their imagination was worse than the reality.
Hey Kelben..when do you find out what those freaking lumps are? I seriously hope they are just lumps of fat....! (where else can we say stuff like that??).
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Heidi..I don't think I can give up chocolate...I plan on running a heckuva lot more..once it warms up a little...
I don't think I can give up potato chips either...hmm.what to do.
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I'm up for dropping 10 pounds. Are we going to have an official starting weight day - like January1? Got to enjoy the rest of this week first!!??
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Hi, I"m in for 10 pounds, too. I will start after I return from New Orleans after New Year's. I don't think I can give up chocolate either. I have myself convinced the 80% dark chocolate I eat is good for me!
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