TRIPLE POSITIVE GROUP
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Evening everyone: I met with the cardiologist today and will start back on Herceptin with Chemo #4 so now lets see if my oncologist sticks to her word and ends my chemo with #4. My face, arms, chest are a wreck from the taxotere and one arm (not hand) is swelling too...it comes and goes and they tell me the Taxotere is doing that too.
My heart palpitations are not from chemo (according to the cardiologist) but he says I have something that I was born with that causes the palpitations and it is a fluke that they surfaced as I began chemo. I'll wear another Halter monitor next week for 24 hours and depending on the # of palpitations, either medication or a surgery to 'zap' the tissue causing the palps and then they should never return. He says for me to be careful exercising because after working out, I can become dizzy which is dangerous. Oh, well!
Arlene
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Arlene-I'm glad they are closely monitoring the heart issue and that the chemo didn't cause it.
Is the swelling we experience from the Taxotere or the steroids or both? I still haven't figured it out. I've picked up a total of 9 pounds which I think is mostly fluid since I can't eat for half of every cycle. The swelling is becoming worse now during cycle 5, I've picked up another pound or two this week and the lower part of my legs look noticeably swollen. My MO never seems concerned because the weight gain is gradual and she dismisses it as something that will go away after chemo. My abdomen also seems bloated/swollen all the time. Are other people having the same problem?
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dragonfly - Most likely the taxotere. STeroids are supposed to try to keep it down. It's a miserable SE - sorry.0
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Hey NMoss: How'd #4 go today. Only two remaining, you are almost done!
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Omaz how long after chemo until all this swelling goes away?0
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dragonfly - I don't remember exactly but I think it starts to go away around 5 weeks or so. Sometimes a diuretic can help. I had it a lot in my forearms.0
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Forearms is were it is the worst for me. Actually just one forearm and the non-surgery side. When it first started, I thought it might be LE. If only my skin rash would clear up. I am wearing long sleeved shirts to cover all these burn looking things. Looks like I have a bunch of pre-skin cancers frozen off....tons of them!
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HI - someone had mentioned that there thighs were looking swollen. I am 4 weeks out of TCH and I feel like my legs are achy and swollen all the time. I have gained about 8 pounds. It is weird. I keep hoping to wake up and it will be gone. What is strange is that my jeans are normal around the waist, but the thigh area is so tight.
Anyone experiencing this?
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I have gained weight too Dragonfly- i am noticing the bloating type feeling more this last cycle. My legs even felt swollen last night after me being at work more and not keeping them up as much.
I do not eat much either. I have gained about 8 pounds or more since starting chemo and eat less. I feel like I have a puffy face, bloated belly and have fat/flab in the back (handles!) now. My thighs are larger too. It's frustrating.
I am worried from what I hear about Arimidex (I'll be on that for 5 years) that I won't be able to lose the weight- that seems to put on weight too.
I have resigned myself to the fact that I at least want to be toned. I hope to start an exercise program after this next/last Taxotere/Carbo (one week from tomorrow- yes I am counting).
I will have my exchange surgery on 7/6 (if my hemoglobin is at least 10). So that'll likely knock me back a bit- then I will start Arimidex about that time too (I think).
I do hope the bloating/swelling will get better.... sigh....
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Lisa and dragonfly - It will get better! And you will be able to exercise again.0
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Hi LisaGH - I keep researching hemoglobin levels for surgery. I am two weeks out from my exchange and mine is a 8.2. My PS does not seem to be worried, yet I have had two major infections - one in my hand, the other in my foot. I am thinking I should really delay and work up the level. Was it your PS that said it should be a 10?
I have been counting down the days to get these coconuts out!
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dragonfly - I had the same swelling and it was causing problems and noticable swelling in my node dissection arm - they gave me a diuretic the day after tx#5 and within a few days I lost 10 lbs. I was having difficulty getting my shoes on and swelling everywhere. I am actually at my pre-chemo weight now after the diuretic.
Anniemomofthree - Hemoglobin is not connected to infection, it connected to anemia. Your WBC would be what they would watch if concerned about infection.. Hemoglobin levels would dictate a blood transfusion if it gets too low. A blood transfusion does not contain white cells, or have an effect on those counts.
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Thanks SpecialK! So is the WBC the most critical indicator for surgery? I assume there is so little blood loss in an exchange, that the hgb count would not be that important?
Wishing I had some of your great knowledge and experience!!!!!
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anniemomofthree - you can always ask me a blood related question - I work in the Blood Bank at the hospital where I had my BMX.
Yes, your white count needs to be satisfactory (within normal range) to be safe from infection during your surgery.
Your hemoglobin should be close to normal range prior to surgery because it is an indicator of fitness for a surgical procedure. That being said, mine is chronically low, and was prior to beginning chemo. I was only successful about half the time I tried to donate blood because I would fall just below the normal range. Your hemoglobin is actually pretty low, but you can try to improve it by eating leafy greens and red meat and other high protein foods prior to your surgery. Do you have any light headedness or dizziness at all? I would say they will do a CBC just prior to your surgery to check all your counts and make a decision at that point. Are you having your exchange done in an inpatient facility?
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Thanks SpecialK!
My white count is low too, I believe 2000 last week. My onco thinks I will be fine. My PS does not seem to be worrying either. I go in on June 3 for blood work and herceptin. Then on June 7 I have the exchange scheduled in an inpatient facility. I am also scheduled to head back to work on June 10. What fun!!! So...part of me thinks that I am just rushing into too much stuff and I should wait until I have healthier blood work...I have the swooshing in the ears, the light headedness (ditzy!) and chronically getting lost and a bit confused (and I am 43!).
I really need to call work to confirm that I am coming back...but there is just too much hanging out that is unresolved. Ughh!
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anniemomofthree - your light headedness and mild confusion are symptoms of anemia, low hemoglobin. I am pretty surprised that your docs would consider an elective surgery with a count of 8.2. You may want to reconsider and postpone a bit? A lot of docs would be ordering a blood transfusion with symptoms and a count that low. Think about it. Can you return to work and do the surgery a little later, or is your leave from work sort of all-inclusive?
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Thanks...i am leaning towards pushing the exchange out. It seems a bit crazy to hurry into this. I just left a msg for my boss saying that I am going to ease back into work, from home. I am just too tired. I am relieved to hear that many of my symptoms could be anemia related rather than chemo. My drs. seem so casual about this all...and I feel like crap!
Looks like I get to show the ginormous coconuts more this summer. Oh well, there are worse things in life!
Thanks for all the info. I love these sites. Hope everyone is doing ok and coming to the end of a treatment. I am not on herceptin alone, no SEs yet!
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anniemomofthree - I think that is best - give your body a rest! Hey, a rhyme!
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Annie: Sorry to hear you are having such a difficult time. It sure isn't easy, is it? Good to hear that you'll take it easier.
Everything should start getting easier now.
Arlene
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I gained a lot of fluid on chemo. By the end many of my shoes were too tight/uncomfortable and there were some boots I couldn't zip up. My mid section also filled up. My LE PT noticed how tight my jeans were around my calves. I wear straight leg jeans not skinny jeans. I am still on a small amount of diuretic. I will be trying to ween off next week. My NP thinks the fluid retention is left over from chemo. I think it's the Herceptin. I went as high as 142 lbs before the fluid pill. Now with it I'm 136lbs. Before chemo I was 129-128lbs (ideal weight).
Anastrozole (generic Arimidex) and losing weight. Although I haven't lost my 8lbs I know I can. I haven't been exercising the past month because of the shingles. The winter before chemo I weighed around what I weigh now (or maybe a bit more). Once I started working out I lost it. Took 3 months for it to start 6 months to be completed. I do not believe that Anastrozole has had any effect on my weight.
LisaGH you will be able to lose it eventually. I too have big thighs. I think 4 of the 8lbs I gain whent straight to the thighs, 2 lbs to the butt and 2lbs to the calves. Everything else is the same. I've been this big before (except for lower legs). I know it can get it off.
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I second omaz with the coolibar products...best thing on the market. I keep an over shirt and a light jacket handy.
My skin is freckled and tan a year out. It looks like age spots a bit. I have no tolerance for heat anymore, that's for sure!!
I go tomorrow to meet with knucklehead neratinib trial doc again. I don't want to start until I am back from Europe. Don't need any surprises!!0 -
It's funny you mention thighs. I was just shopping for shorts and felt like I didn't recognize my thighs...they look puffy. But chemo ended over a year ago. I lost weight during chemo, and gained it all back with tamoxifen. I can't shake it no matter what. My ideal weight is about 140... I am a little over 5'8. I am about 10 lbs over it. I have a scale that measures body fat and I am still around 21%, so that's good. I just so enjoyed the lower weight!!!
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I want to chime in on the leg swelling, (ie fat thigh) issue.
I've always had slender legs...even when preggers, even when my belly was not slim...lol. While on TCH and for about 6 weeks after my thighs swelled so much my jeans were too tight when I first pulled them on (until they stretched out).
I monitored caloric intake and worked out the entire time on chemo and my weight fluctuated as much as 10 pounds!!
This is how I looked at it (and maybe it will help you).
I weighed myself to keep in touch with where I was and how my body was reacting to chemo..but my advice is DON'T BELIEVE THE SCALE WHEN IT CREEPS UP if you know you're not over-eating!
A pound is 3500 calories. So unless you are totally over-eating the weight you see on the scale and feel in your thighs, around your middle, is NOT real. It is fluid.
The weight you can "trust" is your lowest....for instance, towards the end of TCH while on steroids my weight would drop...I found about 7 weeks after I was done that my weight settled there (at the lowest).
Anyway, the way I got through it was to be stubborn with the mentality.... I will continue working out and monitoring calories and protein like normal no matter what my weight or thighs do. That way I know I'm doing everything I can, and if it still comes, then it comes. It's not real weight.
I have to tell you...by the 6th tx that was getting hard to do...my thighs HURT so bad, and I realized how difficult it is to workout/eat right when there is no pay off (fit looking body).
I'm 8 maybe 9? weeks out now and I'm here to tell you that it will go away.....just stay faithful to eating well and exercising.
And be prepared...my thighs hit their worst about 3-4 weeks after done. But that was the apex. There is still some residual fluid between the muscle and skin...I can see it when I do squats....but it is fading ....
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I thought for sure that Tamoxifen would inhibit weight loss after chemo. I do think it makes it a little harder maybe - but then again, having a hysterectomy may contribute. I had been eating whatever I wanted since I started chemo - it started as eating whatever sounded good b/c so much sounded bad, and then it got out of hand with plain old feeling sorry for myself.
However, about 6 weeks ago I decided to really turn my eating around and start working out. It has been hard work, but I have lost 12 pounds so far. I'm officially lower than when I started chemo (which was not a good weight for me). I'm 5/6" and after chemo I weighed 161 (blech). I'm down to 149 - would like to get under 140.
So I just want to assure you all that if I can do it, you can do it. (I do not recommend trying to lose anything including fluid while on chemo - just get through it. We have plenty of time to get things in order after chemo!)
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saralmom - That's great!!! Good job on the weight loss.0
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anniemomofthree- yes it was my PS that said my hemoglobin needs to be 10. i was close last week- i am thinking/hoping 5 weeks out from chemo i'll be at 10- i think i have a good chance too. Yes I am eating red meat and greens etc. it has helped. I will up that after this next and last TC if i need to.
Thanks to all on the weight/fluid/body notes- it is just weird about being so big and knowing I have NOT eaten much if anything at all....and like you all- go days at points with eating hardly anything on the tough side effect days.
One week from tomorrow- last TC- man I can't help but be so excited. It just seemed for soooo long it would be forever- now it seems like it went by fast.
If all goes well my exchange surgery will be 5 weeks after last TC. I know that it will be pushed out if hemoglobin is low- I am thinking I can get it to 10 at least- but I know that I'll probably know by about 6/15 which is the last weekly herceptin before I switch to every 3 weeks.
All the great advice on here is much appreciated. And support- I have NEVER had big thighs in my life until now. It was so weird putting on pants and feeling them tight in the legs. uggh.
Lisa
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Those thighs...they just make me want to eat more cookies!
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Lol Annie....yup
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Lisa...I'm with you on being frustrated about the thighs and pants not fitting right! The swelling is terrible now. I asked the MO about it today because I'm 10+ pounds over my normal weight now and I haven't been eating like I normally would. My weight can fluctuate as much as 3 pounds in a day and the swelling has really accelerated during TCH #5-ugggh-it's really uncomfortable. The MO just said it's fairly typical for taxotere and will get better when chemo is over.
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The swelling in my arm is worse tonight. This all started after all the saline they pumped in my yesterday with the accessing the port, the MUGA scan and then deaccessing the port. Probably a concidence but it is miserable. I just finished icing it and it seems to have helped some but I'll be calling the doctor tomorrow on it. When I saw this coming yesterday, I took off my wedding ring which is a good thing because today it would have needed to be cut off as there is a bit of swelling there too.
End of whining!
Arlene
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