TRIPLE POSITIVE GROUP
Comments
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At one time after chemo I couldn't sit crossed legged. I know do that as part of my stretching. Yes it really does go away. I thought it never would but it does.
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My legs got their worst at 4 and 5 weeks PFC...but at the end of the 6th week they really started shrinking, feeling less tight, and the pain receding....it DOES go away...just takes time ....
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dragonfly1 My last chemo was Feb 18 and I now walk 3-4mi at least 4x's a week. I remember when i started, I told my walking buddy that my legs were like jello and probably couldnt go far, but i always did the 3 mi, but now I can do it much faster. Stillhaving a lot of joint pain, but could also be this humidity and rads.
Some of my dear friends are teachers and off for the summer so this will be a first that I am not working and we have plans of being "the real housewives of Seneca County" LOL
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Hi gals,
Had my port placement yesterday...all went well...and I'm so glad its over. I will start TCH next thursday - and I signed up for the ALTTO clinical trial. So, I should find out what group I will be randomized into within the next few days.
TonLee- How are things looking? Are your blisters still healed over?
SpecialK or Bucky- Tell me about the Miralax and Claritin and how it helped you? It sounds like it really worked for you and maybe I should give it a go before my first chemo treatment next week.
Thanks to all!
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Christean - If you will be receiving Neulasta the day after your chemo take a Claritin an hour prior to your scheduled injection. Don't cut it any closer, then take it for several days (every 24 hours) afterward. The antihistimine helps ease the bone pain from the marrow expansion in the large bones caused by the Neulasta. Because you may have bone pain from the Taxotere it is really best to try to minimize what you may get from the Neulasta. You may find some discomfort from the first one, even with the Claritin - but you have to figure this is the first time. Nothing I couldn't handle with OTC pain meds. You may also find a pretty mean headache with that first tx - I did but didn't have it again. Note also that some of the anti-nausea meds carry a headache warning that may compound it! As far as the Miralax I would NOT do anything until you determine whether or not you will need it. I did not at all - I had pretty severe diarrhea, for 10 days following every tx except this last one. Most go one extreme or the other, or have no problem. So I would wait that one out until you figure out how you will respond, but follow the instructions on the package if you find you need it and up your fiber intake. A lot of folks got good success from dried fruit and whatever stool softener/laxative combo they chose.
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dragonfly - I am swelling up like a balloon as I am typing this. I have some man-hands going on, my feet are killing me and the nurse at the onc office asked me why my face was so swollen. Fabulous! My CBC was dismal - hemoglobin in the basement and lowest RBC to date. I feel pretty fried today and my node arm is starting to hurt. Am I whiny, or what? But I am happy nonetheless! As long as I don't explode I know it is only temporary. I had a long talk with said nurse - she doesn't think I should go back to work - I am starting to have some doubts if I can do it, ugghhh!
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Christean - I used Claritin during chemo and I had very little discomfort from Neulasta. I started taking it daily about a week before my first treatment and took it EVERY DAY until about a week after my last chemo.
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Christean SpecialK is right-you'll quickly figure out which category you are in during your first cycle. I managed to have problems with both and it was very consistent during every cycle. I had constipation for the first 3 days following every chemo and I learned to take the Miralax the day before chemo and for the next 3-4 days following. On day 6-10 I had D/severe cramping during every cycle and was forced to go to a liquid/soft diet every time. It seems that most people didn't have such a severe GI problem, however, so hopefully you will have minor SEs. I found that my SEs were very predictable and it was very easy to manage them after the first cycle. In spite of the worst SEs I was still able to work full-time and only took a few days off in cycle 4-6. It is very doable and you'll be fine
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Thanks so much girls!! I'm off to buy some claritin. Yes...I will do Neulasta inections the day after my chemo. I will try anything I can to avoid nasty SE. I appreciate all of you so much. Your advice makes it so much less scary!
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SpecialK I'm with you on the swelling. I went through at least 3 wardrobe changes this morning to find anything that would fit because I'm at my highest weight yet. It's a challenge because I swell throughout the the day and my pants that fit in the morning no longer fit in the afternoon-ARGHH! I feel like I can't breathe by this time of day. I was afraid to even ask about my blood counts on Tuesday so I didn't! I'll check on it again next week. It really is hard to be done with chemo but not really done with chemo, right? Chemo certainly isn't done with us, is it? Don't you have surgery coming up soon and if so, can you wait to return to work until after that?0
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Hi Christean! I took Colace 1 tab 3 times daily for the first week. (started the day before) and Mirolax once daily (didn't need to use this every day
and it worked well for me. The Claritan I didn't take correctly the first time (not soon or long enough) and I did get the awful bone pain in the hips and back. I started taking it the week before my last tx and will continue to take daily until I am done with tx, and this time it was awesome, only a tiny bit of back ache and that could of been from sleeping wrong or just being old. Lol!!!! I have heard some women who never get the bone pain at all and didn't need the Claritan. Special K explained to me quite a few pages back about what happens to the bone/bone marrow after Neulasta. This drug has def kept my WBC count up (50 yesterday!) and out of the hospital with an infection.. Good Luck to you!!! I have had only 2 txs so far and besides abdominal pain for a couple days and being tired I can't complain.Oh I almost forget the worst for me (as of late) has been the terrible facial acne!! Much worse this time!! I am considering joining a leper ?sp. colony it is so bad. I called my onc/? PA and she is sending an Rx called Minicyline to the pharmacy ASAP. Has anyone had to deal with this side effect? Arlene did your acne get so bad you didn't want to leave the house?
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bucky - I had some breakouts and red marks on my face - seemed worse right after tx and then calmed down until the next one, of course. Bald, fat and teenage acne! As Paris Hilton says, that's so hot!
dragonfly - I am swelling kind of suddenly today - I actually feel like a balloon! I am so uncomfortable. My PS says no surgery until July. He is concerned about the condition of my white cells and giving enough time for the chemo to exit, so that I heal adequately. He is absolutely right to be cautious in light of my issues back in Dec/Jan. I had a long talk with one of the chemo nurses - she had some real concerns about my ability to go back to work from where I am at this point to full-time work in a couple of weeks. Then I would have to ask for time off again in just a few weeks for a surgery. I am going to have to talk with my boss and see what she thinks but I am not sure how I am going to handle this.
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SpecialK It doesn't make sense to put yourself through that mentally or physically. The timing is wrong-by the time you gear yourself up to working full-time the surgery date will already be here. You do realize it's almost mid-June, don't you or has chemo gone to your brain today
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Dear ladies,
I'm reading your posts to a newbie and really regret me not to have such support 17 months ago, beginning with heavy unknown proceedings. It's a big difference either getting a booklet about, or receive so many vivid, careful and kindhearted advices from sisters in the same situation...
Best Usha
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dragonfly - no chemo brain - I do realize! That is my dilemma - my boss has been so supportive and they have worked so hard to hold my job that I feel guilty. The more I think about going back in a couple of weeks the more I think I just can't do it. I just hate to let them down after they have been so great to me. Then add in the surgery and it doesn't seem like it can work. The only possibility is to go back so everyone can get some vacation time in and then leave and have the surgery and don't go back after that. Not sure what to do.
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Usha - How good of you to share the advice here with a newbie - this site has been so important to me too!! Best wishes to your friend, I hope her treatment goes easy on her.0
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Christean--I'm one of those who don't need Claritin or anything else to counter the Neulasta. I only knew that I didn't need to take anything because I didn't take anything after the first TX and didn't react. My onc said that I probably wouldn't react to the other TXs either and I haven't. I know that the bone pain can be awful and that the Claritin taken early can make a huge difference, but I'd be taking it unnecessarily if I hadn't waited to see what happened.
I feel like I'm going against the grain here, but I don't like taking drugs for side effects unless I know that I'm having those side effects. I thought I'd be one who suffered with constipation, but if I'd started taking stool softeners right away, I'd have been in big trouble. I struggle with the big D every TX.0 -
SpecialK I totally understand-look who's talking. I have a ridiculous work ethic and have been dragging myself to work on some days that I probably should have been resting. I would probably feel the same way. How many weeks would you be working and what is the workload like? Is there any possibility of part-time? It just seems like it's going to be very hard on you and it's not a good idea to push yourself/run yourself down right before a surgery.
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Dragonfly and Special K,
I also had the swelling but my onc nipped it in the bud at tx 3. When I gained 3 lb in a day she started me on a small dose of Lasix to be taken as needed. I usually take it only 2 days a week. Within 2 hours I start to pee it all out.
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dragonfly - this would be a permanent return to full-time. No part-time option because it is 24-hour staffing. I have already been gone since Nov. 1 and they will no doubt draw the line. I would return and then have to ask for time off without pay for the surgery and then hurry to return again. It is a bad deal all the way around.
sewingnut - I have been on a diuretic since I had visible swelling at tx#5. It worked great for the first week - I lost 10 lbs and felt normal sized, then it suddenly all came back within the next week and has been that way ever since. It is driving me crazy!
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Chris,
Thanks for asking. The two spots are yellowish hard now....I don't know how it will ever heal. I guess when I am done with tx, I'll scrub it with a washrag and soften it up some....
Glad your port placement went ok. I love my port. So much easier than finding a vein...
Also, I took Magnesium Oxide 500 mg (this is the same thing as Milk of Magnesia, but the MO is cheaper...you can get a whole bottle of MO for about $3-$4) after the second tx when the big C just about did me in....I took it the day before tx, the day of tx, and the day after.
The benefit is twofold. First, it keeps things moving. Herceptin is notorious for loosening things up, but for me it needed a little kick start. Second, magnesium is important, especially during chemo. For whatever reason this regime is hard on the legs. I found the Mag. Oxide helped with the legs issues. For maximum absorption I took it with calcium at night.
Hope that helps. The first few txs will give you a good idea what you need. I didn't have Neulasta the 1st TX and spent 5 days in the hospital...
Also, if you can consult a nutritionist before you start, or soon after...I found that really helpful. She was able to look at my workout schedule (I worked out the entire time, all 6txs), my weight, and helped me figure out how many calories I needed to maintain my weight.
(I didn't want to gain but I didn't want to lose either since I knew it would be mostly muscle.) At 115 pounds I needed between 1600-1800 a day....I stayed near 1800 and didn't gain any weight...so about 15 calories per pound, give or take...and I required about 80 grams of protein a day. I met that with Greek yogurt and fat free cottage cheese on days I couldn't stomach meat.
Also I believe counting calories during chemo is REALLY beneficial. Between the steroids and fluid retention a lot of women feel really bad when they get on the scale. Because I counted calories (kept track at fitday.com it's free) I KNEW it wasn't real weight..it couldn't be. One pound is 3500 calories and because I tracked my calories, I knew the scale lied because there was no way I consumed 4 pounds worth of calories (or whatever the little lying scale said... lol).
And I was right. Once about 7-8 weeks out...it all went away and I went back (and stayed!) to my original weight.
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Specialk I have been out of work since Feb getting ready for surgery on Mar 31 then recovery from that, then rads. got a call from my nurse magr asking me to come in and clean out my locker because she had to post my job. Mind you, they HAVE to give me a job when I decide to return, it just may not be the same job. I too didnt want to go back and then just have to request more time off every other day for testing, herceptin, surgery #2 and so on.... I want to hit the 1 yr. mark in Sept or Oct and then go back. I work with teens with psychological issues in placement and when I went in to visit the staff the kids seemed to all be in crisis, being the end of the school year, and one kid actually put his head into a window and broke it.....needless to say I was only there 1/2hr and was stressed beyond beleif, just reinforcing my decision that I am not ready to be back.
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Hey ladies must be something in the air I am swelling like crazy too! Inhale to ask my onc for a diuretic on Monday when I get H. At first I thought is was fat. Well it still maybe... But I had TX 4 3 weeks ago and shot up 5-8 lbs since then. Any thoughts? I have been eating whole foods but snacking a bit more than usual but I don't think 5-8 lbs worth??
To you ladies struggling with Acne, I use a prescription face wash called Clenia or Prascion and Epiduo for spot treatments. Works really well. Oddly I still get me period pimple each month...0 -
Hello Triple Positives, Today is the first day I feel wiped out. Dont know if its coz no steriods today or not. I've been seeing alot of ladies who get Neulesta after your chemo rounds. I was not offered this. Instead my Onc said they would check after my blood work on Monday and let me know Tues when I go for weekly Herceptin. Is this normal?
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Hi all:
Been pretty much down and out the past few days from SEs from TX#4. Feeling a bit better now but boy when the steroids leave the body, not fun. Food is disgusting as is water but popsicles seem to do the trick. Last one, thank goodness. Did have to take a compazine today too.
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cotrinh76
That is exactly what my onc did with the Neulasta. I didn't get it the first time but when I went back for my blood work a week later, my WBC was low so I got it then and thereafter, I got it the day after chemo.
Arlene
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carberry - That does sound stressful! I wouldn't be ready to go back either! My problem is that my leave of absence ends on July 1 so a decision is forced. My job does not have to hold my position, or any other, for me. I can quit and then go through the re-hire process but in all honesty I probably wouldn't try. The work is too hard and the pay too low. My priorities have shifted and the money I made there was just to offset my children's college expenses - we can make that up somewhere else.
nmoss - sounds like Taxotere fluid weight. It is weird because it fluctuates so much - like weight attached to a mood swing!
cotrinh - don't worry - they will check your first WBC and then decide about the Neulasta if you need it.
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SpecialK - Going through similar situation with work. I am 6 weeks PFC with TCH. Still doing herceptin and will be til Dec (hate this port, by the way!). Low RBC/WBC pushed my surgery til sometime in July. I just started back to work today - boohoo! I went back FT, but am using vacation to make it PT. I told my boss today that I also have an upcoming surgery. Felt like I was letting him and the rest of the team down. I work for a medical company. Anyway...trying to be open and flexible. The one thing i will add is that at 5 1/2 weeks PFC, the leg aching/swelling went away, got my energy AND motivation back. Thinks look much more "doable" this week. Thinking of you...I hope things work out!
Hang in there everyone....each day is a better day!
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Good to hear that you get your energy and strength back. I went for a walk today and it took me 40 min to go a mile and I has to stop twice because of leg pain! I am hoping your right SK about tax fluid retention, it is like a mood swing ! Arlene so sorry you feel crappy but it's your last!!! Count the days!!! Cotrinh - I had a rough go with the Nuelasta , but my onc insisted so I got it everytime and it was the hardest part of TX for me. I like the wait and see approach your onc is taking.
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annniemomofthree - I just feel bad because my boss/co-workers have been so great. I work in the Blood Bank of the hospital I had my BMX in. It is a VERY dynamic environment - potential for multiple transfusible events simultaneously - I rarely sit down, sometimes don't get lunch/break, phone never stops - I am not sure I can return to that right out of the gate in a couple of weeks when my last tx was last week! I will have to do surgery in July, have fills, do Herceptin, etc. as well - all after work. I have no vacation left - they made me take it all up front before my STD kicked in.
nmoss - I swear you could actually watch me swell up today - it was crazy. At one point my node arm felt like it was in a bp cuff. It kinda scared me! You and me and Arlene probably all need a nap.
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