TRIPLE POSITIVE GROUP
Comments
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If only the hot flashes would let me!!
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nmoss - too funny! It has been so long since I had a good night's sleep - you would think with all this exhaustion it would be so easy!
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I am 6 months out as a reported before and still having the hot flashes, about 1 per hour roughly. At night my longest stretch is 3 hours, but usually it is 2 hours. Don't know when this gets better.
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omaz - I can sympathize. I too had the one an hour kind - surgical menopause from TAH/BSO at 45. I did HRT (hello, bc?) for 10 years and was really scared to go off, but did cold turkey day of bc diagnosis. I have not had as much of a problem as I anticipated but I probably have half a dozen or more during the day now. They seem milder but sometimes on a really hot day I will have more, or the week after tx (now) I will have more as well, and I always have more at night while trying to sleep! It will be interesting to see what happens now that chemo is over.
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Tell me about it! I actually would love to have my crappy pms cramp filled period back in second! The hot flashes are much worse than PMS could ever be.
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As far as fluid retention the give away for me was putting on shoes. I could tell how tight they would get.
BTW I don't get hot flashes anymore, even on Anastrozole (3.5 months). I know that doesn't happen for all women but you never know. I never had them real bad though. Mostly at night between 2-5am I would get hot, not drenched sweat though.
But I have to tell you that you will eventually feel better especially once hitting the 5 week mark from last tx. I'm not saying I don't still have some residual SE. I'm still retaining a little fluid, have some nail lifting/little soreness (but I got that really bad) and my hair, although looks great is not quite the same texture yet. I do feel it will take a full year for things to fully resolve but at almost 5 months out I feel pretty damn good.
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Cotrinh76 I always had chemo on Tues with steroids in the infusion + oral steroids for 2 days after and I would experience a significant spike in fatigue on the following Friday/Saturday. I called it the "steroid crash". It would get a lot better after that. If you took the oral steroids, that could be what you are feeling. As far as the neulasta, it seems about 50/50 as to how the MOs handle it. Some docs like to wait and see based on the bloodwork and others automatically give it...0
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Cotrinh76 I always had chemo on Tues with steroids in the infusion + oral steroids for 2 days after and I would experience a significant spike in fatigue on the following Friday/Saturday. I called it the "steroid crash". It would get a lot better after that. If you took the oral steroids, that could be what you are feeling. As far as the neulasta, it seems about 50/50 as to how the MOs handle it. Some docs like to wait and see based on the bloodwork and others automatically give it...0
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Lago, I'm very happy to hear that the hot flashes eventually subsided because I haven't had a good night of sleep since the beginning of chemo so I hope it happens for me too! This swelling is unbelievable. I'm at the point in the 3 week cycle where I'm picking up several pounds during the day and my weight has reached its highest point. I'm going to talk with the MO about a diuretic when I go for the Herceptin next week but it sounds like that has only had minimal success for others or has worked temporarily and the fluid comes back-guess I just need to be patient and maybe it will eventually stabilize. The swelling and sore gumby legs are really dragging me down at the moment. Oh well, better drag myself off to work now...
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Diuretic has worked for me. I am on a very low dose. Initially taking 1/2 pill! Right now I'm taking 1/2 pill every other day trying to ween off it. I still don't think I'm ready but I'm only gaining about 2-3 when I'm not on it. I didn't start the diuretic till a good month or so after chemo when I complained I was still retaining fluid.
I used to gain at least 8lbs of fluid when doing chemo! I couldn't even get my feet into most of my shoes. I had no ankles and my tummy would swell too.
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Laides - totally agree on the fluid gain. At about 4 weeks post chemo, I was 7 pounds up. By week 5....it all fell off. Jeans (in the thighs) suddenly fit. It is weird...but it seems like everyone feels better at about 5-6 weeks PFC. Hang in there. I did not do diuretics, but that seems smart. What I did get to help the CRASH was an SSRI - Celexa (baby dose of 10mg) to help with the chemo and chemopause crash, night sweats, etc. Never ever taken drugs (except for cramps) and now I am on this SSRI. But, I read a study on BC and it seems like a typical prescription at this time PFC. My oncologist said that for those "younger" women who are hit by the chemical induced menopause, the SSRI will help with night sweats and hot flashes. Three weeks into it and I feel great...that is after week 5!
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Hi Ladies:
I'm 5 days from Chemo #4 and my heart palpitations are really bad. Did any of you experience this as you came off the steroids and, if so, what did you do for it? Just let it run the course?
Thanks, Arlene
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Hi ArleneA,
I did 3x TCH and had to stop before the final 4th. Kept on with just the Herceptin, 1st week extremely tired, 2nd week felt better, 3rd week felt pretty good:then time to start over! 8 weeks ago started the generic Arimidex and the palpatations started. By week 6 I could hardly move and one day cried non stop for 4 hours. I stopped taking it and felt better right away but the palpatations continue along with the anxiety. Seeing the oncologist on Tuesday and know he will want me to try another AI but they are all the same from what I have read.
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Those of you that finished Herceptin… did you get your port out right away or did they leave it in for a while? I just bumped into my neighbor and she has a friend that was told it would be left in for another year. ( Every 3 weeks ports need to be flushed). I'm not sure what stage this woman has but I do know that all 3 of us have the same onc. I don't see my onc till July. I hope I don't have to wait a year but who knows.0
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Did anyone take their port out BEFORE finishing herceptin? I have nine left...hate this port!
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ArleneA - I just ride it out and it goes away for me after about the first 10 days.
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Ugh Lago, I hope that's not standard...I can't wait to get it out...it is constantly sore now for some reason....
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My Onc encouraged me to have my port out as soon as I was done with Herceptin...........didn't realise how uncomfortable my port was until it was removed.
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I want mine out Asap... I'm glad I got it...but so ready to be done.
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I am glad to hear I am not the only one. My port has been very painful since I got it in and the area between my port and armpit has been tender to touch and swollen. Clearly my body hates this thing. I have 10 more TX of H and I am trying to deal with it but it itches , pinches and pulls constantly not to mention the surgical cut refuses to heal and it still very bruised and purple. On another note anyone get cold flashes after hot flashes ? Anyone PFC have there thyroid levels checked ?
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Wow! I didn't realize that the port could be such a problem. I just wish more techs/nurses other than just the chemo nurses could access the port for blood draws and the like. If everyone knew how to use it and it didn't need the regular flushing, I'd leave it in forever. I have always had issues giving blood or getting IVs started and the port makes it so easy.
My sis-in-law is a nurse and said that she sees PICC lines instead of ports where she works. They hang outside the body and need to be cared for--dressings changed etc. I'd take the port over that any day.
I have watched them trying to get an IV in other people at the chemo clinic. Sometimes it takes an hour of hot towels and several nurses taking turns. That would be me. I'm definitely keeping my port until I'm done the hereptin.0 -
nmoss having my thyroid checked next week when I get my herceptin. I am doing rads and they are doing the clavicle area so I am checking to be sure they arent hitting my thyroid. I also have a family history, sister hypothyroid and mom had thyroid cancer. It was my idea to have it checked and thr RO was totally ok with that, heck they draw blood every 3 wks at herceptin, just add it to the list.
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I have my thyroid checked regularly. My RO said most women who have problems may not experience them for 12 months after final Rads....I'm already hypo so I'm sure my thyroid is gonna poop out...hope not.
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I hope not either! You have had a rough go if it. I only ask because a nurse I met today and 5 year survivor said chemo can really wreck your thyroid and my concern is how do you treat thus without hormones?
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I know that I can get my port accessed by the chemo nurses if I have a test coming up. They access it then I go back and have them remove it. I did that once for a CT scan but it ended up since it wasn't a power port they couldn't use it. Not a big deal because I was also getting Herceptin after my scan.
I don't know. It sounds a little extreme to keep it in for a year. This woman might have been a much later stage or there might be some other concerns.
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Lago - I asked my onc if I could get my port out after my last herceptin and he agreed.0
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I got my port out about 1.5 weeks after my last Herceptin. My onc said she sometimes hears of people getting them out literally the DAY after the last one! It took me 1.5 weeks b/c I had to have an appt with the surgeon and then they had to book the OR. I actually considered keeping it in as an insurance policy of sorts so I wouldn't jynx myself. But after I heard about the flushing every 3 weeks I wanted it out immediately!!
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I can't wait to get my port out. It was fin for awhile but now I am just sick of it. It doesn't always draw but it will flush and it hurts more than it did before. I still have a year before I am done the H. Ugh!!
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saralmom - I actually have my removal booked with the surgeon and OR the day after my last herceptin. So your onc is right!0
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Hi gals,
Just had my port placed on Thursday, it is quite tender to the touch but I'm hoping that will improve. I do feel a bit like a have an alien or something under my skin. I'm just hoping I will get used to it. Anyway, before my port placement I asked my onc. when it could come out. She advised me to leave it in a minimun of 2 years, as that is when my highest chance for recurrance would be and if that happened, the port would already be in place. So, I just nodded my head knowing that I will be scheduling my port removal ASAP after my herceptin treatments are finished. I don't plan on having a recurrance and so I am not gonna need this thing any longer than that! Hope that helps.
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