TRIPLE POSITIVE GROUP
Comments
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Susan, my activity level is only about 1+ miles a day around a flat track once a day. Yesterday I walked 2+ miles but that's not the norm.
I told my husband about your situation as we were walking and the minute I mentioned childcare arrangements he said "she's doing too much" (no, he's not a doctor - just intuitive
). I see SpecialK ETA: and lago have asked the same question regarding your activity level. My fluid output was almost always higher on the right side and I'm right-handed.
My BS said that people who generally feel better have the drains in the longest time (or something like that) - the logic being that if you feel good you're more active.
After reading your post just now I was curious about lifting restrictions after a mastectomy. Here are a few links that came up in the Google search:
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How long to pick up baby seat after mastectomy?
http://community.breastcancer.org/forum/91/topic/786514
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Lifting my baby
http://community.breastcancer.org/forum/91/topic/789934
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How can I safely lift things after breast cancer surgery?
http://www.sharecare.com/question/how-safely-lift-breast-cancer
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With drains I was told not to lift my arms above my shoulders. Also I think I wasn't allowed to lift over 10lbs with both hands… not that I could since I had nodes on both sides. I used to open the fridge door with my foot. :P
Seriously don't overdue the lifting. You don't want to risk LE. I know it's hard when you have kids but hugging and lifting are not the same thing.
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lago, I think some of the old vintage refrigerators even had foot-controlled openers (or is this my weird chemo brain talking?
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LeeA we might have to ask Rick Harrison.
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Uggh. My left arm is already becoming swollen and I've been researching lymphedema. I didn't know it was also related to activity. My youngest is not an infant or in a carrier. He's four, but he has autism. So he doesn't follow directions like a typcial four year old should. He seems to really understand that I can't lift him most of the time. Prior to surgery, if I opened the car door and instructed him to get into his car seat, he would more than likely go to the front seat and play with the controls and I'd have to physically get him into his seat. But ever since my mom left and I've had to get him to therapy, etc., he is climbing in there himself. I have been trying to be conscious of what I'm lifting. I have my husband or oldest son carry the laundry baskets up and down the stairs. I'm not bathing the kids. I'm not sweeping, mopping or vaccuuming (you can come visit my filthy house and see that!) But I am doing the grocery shopping and there are times when I have no choice but to lift my "baby" because he just won't go where I need him to and I'm on my own (he weighs 40 pounds!). Maybe I should check into a hotel until it stops draining! Thank you all so much for your insight and links.
I am also big busted and had a big mastectomy, which my PS is also saying is a reason the fluid keeps collecting.
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DiZZyMom I was pretty swollen from the BMX, chest arms and all. Granted I did eventually get LE but it really didn't become swollen till after my 4th chemo. It's very mild but I also knew I would get it. My mom has it in her legs as did her uncle so I know that family history screwed me. Don't assume you will but right now do what you can to protect that arm. Tough with a 40lb boy with autism but do your best.
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dizzymom, I'm sorry you're having such issues with the drainage. I'm no help, mine came out on day 7 and I never had output over 25cc any given day (usually 15cc)...I just didn't drain much. I had a bmx, big busted (sz D), and moderate activity level so based on what others have said I guess I should have been expected to drain more. I honestly don't see a rhyme or reason, some people drain more than others! In any case, I hope yours slows down and you can get started with chemo soon. I remember being very anxious to start so I can imagine your feelings of wanting to get on with things.
eta: To avoid infection I never showered with my drains, I did bird baths.....wonder if that matters?
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steiner - I showered often because I preferred it as a way to alleviate pain instead of taking pain meds. I had my BMX drains pulled early - 7 days after surgery because of an allergic reaction to Levaquin, they needed to put me on steroids so I could not have drains in. All the other times I have had them, they did not produce much and came out fairly early and I was showering like a crazy woman! Neither my PS or BS restricted showering beyond the first day or so after surgery. Driving, that was a whole other story!
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How I'd love to take a shower :-) I really appreciate all of your great feedback and support. Hopefully I will be of help to somebody else someday!
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Dizzymom, to take a shower, I safety pinned the drains to the surgical bra. Then used the handheld for a lower half shower. But I only had drains for a week. Maybe you can go to a salon for a hair wash? Im sorry you're having such a tough time & hope drainage slows down soon. I know its hard, but try to take it easy.
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My five year old daughter likes to wash my hair
which gets her and the whole bathroom soaked, but it's fun. And I then do the splash bath with the handheld. I am hanging in there. Just so many of the expectations I had prior to surgery have gone so completely differently..........But really, I am pretty positive and realize that compared to a whole lot of folks out there, we really don't have it so bad!Thank you!
Susan
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I didn't get TE's, but had my drain for close to 6 weeks, he pulled one at about 4 weeks, they had given me an estimate of 2 weeks, I was still draining over the amount when he pulled the last drain, and I ended up with, and still have this jello-y spot just below the where the drain was, I've learned to control the lymph fluid there with manual lymphatic drainage, I think that I was lucky I didn't end up with more issues. I too was not allowed to raise my arms above my shoulders for 6-8 weeks, and wore a binding on my chest for almost 6 weeks. The BS said there are some women that this just happens to. Also, I was more active than I should have been. My chemo ended up being postponed because I got an abcessed tooth, that required major dental surgery, so had to wait a week after I finished the antibiotics - but it's better to delay chemo than to start it with a compromised system!
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Dizzy - do you have some friends that could take turns helping get your son to school? And arrange your grocery shopping when your husband can help? My son had a friend with 3 small children with BC, they helped set up a schedule of helpers to grocery shop, help with the kids, meals, laundry, etc... during her surgery and chemo phase of treatment - they had a fridge in the garage where the scheduled meals were dropped off so that she could rest, and they had it all worked out on a spreadsheet - worked great for them, they had their own business so her husband basically had to work double to keep the income coming in - My son wanted to set up a spreadsheet for me, but my circumstances were different. Also, you might talk to to the social worker at your cancer center for suggestions so that you can get a little more rest to heal. On the days I did to much and didnt' follow the rules I had much more drainage. Also, I had some trucal LE during chemo (didn't know what it was at the time) then mine really developed after radiation. From looking at your diagnosis, it looks like you will need radiation too - so you may need help for a while! Sorry - I wish I lived close and could help you out!
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Welcome Dizzymom. I had my BMX in December 2012, had at least one drain for almost 6 weeks. I wanted a shower so bad! He pulled it on week 5 day 5. I went back go work st 6 week 3 days. I would have started chemo in Jan. I ended up on the hospital with a bad infection on 6 week 6 days. My TE was removed. My chemo was postponed to Feb. 16. So it was almost 12 weeks before I started chemo. It happens. Much love.
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On the night before my first chemo treatment I am grateful to read such inspiring and educational information! I have been reading posts since my diagnosis in November and surgery in December and had not really felt the need to post until this evening....I had a bone scan done last week and a CAT scan and get the results tomorrow, along with the genetic testing results before chemo and feeling a bit overwhelmed!! In addition, I had a power port placement last Wednesday which still hurts so not looking forward to having it accessed tomorrow - any thoughts on how painful it is to access the port for tomorrow? Just getting tired of being in pain most days (seroma and infection from lumpectomy/ sentinel/ axillary node dissection) and I know I just started...also anxious about side effects of "AC" drugs that I start tomorrow and trying to keep up with work and caring for my three young kids....any advice would be greatly appreciated, thank you.
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3littleangels, welcome to you too. Take a deep breath. You will get through this. Tjerebis a cream they can give you to numb the port area before they acess it. If you don't have that, there is also a freeze spray. And if not, if the tech is good, its real quick anyway and you just feel a prick. Good luck.
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I took bird baths for a few weeks until my BS finally gave me the okay to take showers (he said he had forgotten to give me the okay the week before).
I have a few skinny little black belts that came with some Columbia hiking shorts. Those belts worked perfect in the shower (I just laced them through the grenades - as I liked to call them) and after the shower I changed back to the special drain belt I was wearing when I woke up from the first surgery.
Then, after waking up from the second surgery my special belt was gone. Boo hoo. Now I can't remember how I held the one drain up on the way home from that surgery. Weird. It wasn't that long ago. I'll blame it on the (prescription) drugs! Anyway, from then on out I just wore one of the little black belts to hold up the last drain.
Forty pounds is quite a bit for you to be lifting, Dizzymom. I hope you can figure out an alternative in the immediate future but obviously, it's easier said than done.
I've said it before and I'm saying it again: I truly admire all of you who are going through this with young children. Bryona needs to post her image of the cancer mom on this thread! If she doesn't see this I'll look for it and post it. It definitely came to mind as I pictured you going through all this with your little ones, Dizzymom.
This, too, shall pass. <---- my mantra since being diagnosed.
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I'm never caught up here but welcome to the newbies but so sorry u'r here.
About showering I bought the NO Rinse soap and shampoo and it was wonder especially for the people around me. It gets really soapy and u just dry it off, even on u'r hair and it has a nice fragrance and put lotion on after a viola a pretend shower--I couldn't show for 3 months so I guess all kinds of things happen.
And when the port is accessed it didn't hurt at all most of the nurses are very used to using them and it goes riht in, not like a vein, it's great. But yes for about a week it's tender ther but that toally goes away.
I didn't however have any kids to take care of so I'm sure u'll have days u'll need some help and ask for it, don't be shy. Some of us worked for a while with chemo, some didn't --so everyone is different.
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Welcome, 3littleangels. I know you wish you didn't have to be here but if you've been reading for a month or so, I'm sure you know you're in the best place possible considering the circumstances.
You have a big day tomorrow - your first chemo TX and test results. I'm wishing you well on all of it and you are in my prayers.
Re: the port - mine was placed on December 21 and I am still very much aware of it, even just sitting here right now; however, the good news is this: it has been accessed twice and I didn't feel any pain either time!
Usually I'm blabbing to the medical assistant so I don't know if they are using any numbing cream but I'm guessing they aren't because there's not been very much time between cleaning it off with iodine (or whatever they use) and then inserting the needle (or whatever it is). So, regardless of the discomfort (probably from the ongoing healing process) the actual accessing of it has been, thus far, a breeze. I hope the same is true for you tomorrow!
Moonflwer is right - it's very quick!
Also, re: AC side effects - just today I read about two people who have had relatively few side effects from that particular combination. One or both of those posts were either on the January 2013 chemo thread or the December 2012 chemo thread. Also, a fellow BCO member who I've become friends with in "real life" had the AC cocktail during her first BC experience. She has said that she did pretty well on it and was able to work throughout. If I recall correctly, she was often tired but overall she fared better than expected.
Good luck tomorrow. The anticipation the night before can be rough - at least it was for me.
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3littleangels - I want to wish you well for your first chemo tomorrow. I was absolutely terrified of chemo and was almost crying in the chemo room. The chemo nurses were wonderful and so kind. I really felt like I was in good hands.
Its great that you have a port. Mine was very painful for the first week and then it was fine. As Camilegal said, ask for the numbing creme (emla i think) or the spray stuff. I would suggest you get the emla cream for future port access.
You may feel a little sleepy due to the steriods they will give you -- I just felt sleepy. The steroids are to make sure you don't have an allergic reaction.
Thinking of you tomorrow.
Liz
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lago, this old 1936 GE refrigerator had a foot pedal...
http://www.flickr.com/photos/meego123/6039660935/in/pool-monitortops|meego123
Hmm, how did they keep the door from slamming them in the face?
Probably why it's hard to find a very good photo of one - lol!
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3littleangels, good luck tomorrow! I also know someone who was on adriamycin and worked through it, didn't have terrible SEs. She said the worst one was that food was tasteless for a prolonged period of time, which isn't fabulous but it's not the end of the world either. They spray my port with freeze spray and I never feel it when they access it. I hope you read the chemo boards to prep yourself and stock up on the various supplies like biotene mouthwash, etc. My main recommendations are - eat a ton of protein, drink a ton of water, take probiotics, and exercise if you possibly can, even if it's a slow, short walk.
I felt REALLY wired from the steroids, but everyone reacts differently. They'll also give you benadryl during. Good luck on all!
And seriously, no one is going to explain to me the pros and cons of CT scan v. bone scan v. PET scan? Sigh. I guess I will have to break down and ask my oncologist.
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3littleangels, AC has been good to me. Just felt restless, a bit nauseous, and generally crappy the first three days but i felt like my old self by the fourth day, consistently. Just remember to get on top of the big C (constipation) even before it starts. Drink plenty of fluids, water and gatorade alternately, and take laxatives early on. Walking is good too. Good luck.
Btw, how long after last chemo did anyone of you get your periods back? It's just been four months for me and yesterday, mine came back. Im 48 and thought i would be over with this. Is four months too soon to have it back? Im meeting my onc next week before my herceptin #4 and im fearing he might want me to get the ooph. I guess i have to make decisions pretty soon.0 -
3Littleangels, I made myself sick with worry before my first AC, but after the first one, I went more into fight mode & knew I just wanted to count them down. My only bad SE was stomach issues, especially after AC #3, but everyone is different. Just take the anti-nausea medicine, and if it doesn't work for you, be sure to ask for something else - they have many options to prescribe. Like Bcbarbie said, keeping hydrated is key - if you can't stand the taste of water (for some reason, that made me more nausous), try lemonade. Lemon flavor Zero Vitamin Water was all I could stand, but I drank tons of it. Luigi Lemon Italian Ices also helped when I felt to nasous to eat anything else. For the metal taste, using plastic utensils helps a lot. I also found that the chemo nurses were a better resource than my MO for practical stuff, so ask yours all the questions you can think of - like how to make the mouth rinse so you don't get sores (baking soda & salt). I have a whole notebook of tips on what helped me get through AC/TH, so let me know if there is anything else I can tell you! Best of luck with AC #1. Start to count em down
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DiZZyMom I wasn't allowed to shower either till draino. I did go to the hair dresser to get my hair washed although if someone can help you and your kitchen sink has a sprayer that might also be an alternative. I did sit on the edge of the tub and sponge bath. It wasn't like a shower but I did feel much cleaner.
3littleangels my port hurt for a while but accessing it didn't make it worse. I did have numbing cream but 1/2 the time I forgot to use it. It hurts like a shot might hurt… just a quick prick when they first break the skin then it's over unless you get the good nurse. Then you don't feel anything at all. I started chemo with the port access the day after port surgery. And if you can't keep up with work don't be afraid to go on temporary disability if you just can't do it. Also call up the American Cancer Society. They may have some local help/resources for you . 24 hour hotline: 1.800.227.2345 for free cleaning help for cancer patients: www.cleaningforareason.org
One of the things I do hear with AC is some people are just more tired than others on different chemos but it's hard to say. Some people do just fine and work all the way through. Everyone is so different but don't assume the worst. I did. I thought I would get every SE and be puking my guts out as well as everything tasting like crap. Ended up I had no nausea (didn't take any meds for it either) and my tastes changes were so minor that I ate the same as I did before. I wasn't on the same cocktail.
BTW I didn't feel wired on steroids at all. Felt pretty good because for me it kept the bloating down (a SE of Taxotere). I slept fine when I was on them too. Everyone's journey is different.
LeeA it would unlatch the door not actually open it I bet.
cypher the bone scan is to check your bones but not for osteroperosis just for mets. Some oncs order PT others order CT. I think the pets are more detailed but also means more radiation. I'm not positive. I had CT scans.
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Best of luck to you 3littleangels! I have had the scripts filled for numbing cream, steroids and anti-nausea since mid-December. If the first infusion hurts at all, ask your doc for the numbing cream. The instructions I have are to put in on an hour before infusion and cover with plastic wrap. Take care of yourself and I hope you have lots of help taking care of your babies.
Susan
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hi all
just wanted to post BONE SCAN ALL CLEAR - !!!!!!!!!
thanks for all the positive energy flowing up to your sister in the north!
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YEAH ROZEM! Happy dance
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Rozem, I'm so happy for you! Glad to hear the good news.
3littleangels, also when water tasted funky to me, I drank carbonated water with lime, like perrier, except I used the trader joe's brand. It has the lime flavor built in and no calories or sugar. Just another option. It used to be a treat for me, then I lived on the stuff, and now it reminds me of chemo so I'm like, blech. But regular water tastes just fine now.
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I used numbing cream on my port, never felt a thing, it works much better than the freeze spray (maybe I just hated the way the freeze felt).
Cypher - the bone scan looks for mets to the bones, and the CT is looking for mets to lungs, liver... in soft tissue. I had both, my doc didn't do PET's, I do think the PET covers all bases. With the bone scan I was injected with a radioactive something in the morning and had to come back in the afternoon for the scan. With the CT I had to not eat, then drink this stuff an hour or two before the scan, they also put an IV in and injected some sort of contrast, that was weird, made me feel like I wet my pants, but I didn't, thank goodness they warned me ahead of time that it might make you feel that way.
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