Taxotere, Carboplatin and Herceptin
Comments
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LindaKR I'm with your friend. Use it or lose it. That's how I lost in the first place. I mean who's in the mood during chemo? Still prefer lube but not near as much as before.
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I tried use it or lose it and lubes, etc. - all helpful - but then I started developing chronic cystitis from the low estrogen in the urinary tract (yep, you have estrogen receptors there, too, and this can be a side effect of very low estrogen).
So, my gyn, onc, and RO all felt using a small amount of Estrace vaginal cream once or twice a week was needed and very safe for my situation, since I was on Tamox. MO said the Tamox will pick up any small amount of estrogen that might slip into the blood stream systemically.
Urinary issues SOLVED. Sex issues - not bad - still need lubricant - but much, much better and no pain at all. If I used more cream I'm sure I would be like a 20-something, but I'm very conservative with the use - just enough to keep urinary pain away.
And I'm still getting hot flashes, so I'm pretty darned sure Tamox is still working to protect me.
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Taxotears in full effect after tx#3! Runny Herceptin nose is too. I have a raw spot on the inside edge of my nostril that pretty tender from the constant drippy. I recently thought to put some Aquaphor there at night so we'll see if that helps. I wake up every morning feeling congested, then after a couple hours being awake it goes away (once things start flowing again I guess).
Lago, that soup recipe sounds really good! I've been craving lots of soups lately.
Bren, I hope you're feeling alright after tx#4 this week.
Some of you were talking about when hair grows back. Mine has already started. I buzzed it right after tx#2 after it started come out in massive quantities and it started coming back within a couple weeks. I haven't lost a significant amount after tx#3, and I'm hoping it stays that way with my next (and final!) tx next week. The only problem is that I have a receding hairline, it's not growing in quite yet in the front around my face. So until then I have to keep wearing scarves/hats. I will rock the buzz cut thought once I have full coverage! I'm so tired of pulling and adjusting head coverings. Every day after work I rip them off as soon as I get in my car.
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Another gal from bc.org made it a few weeks ago. She and her DH loved it. I also take some of the broth and put it in ice cube trays, freeze it then empty into a bag for future use. I prefer to use my own broth. Not as salty and better flavor.
It's really healthy for you too. Not high in calories unless your eat the skin, don't skim of the fat or just plain eat too much.
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Thx again, ladies. 3 days after round 5 and weak as a kitten. Was walking a lot by now last time but overdid work and never had the 'good' week i expected. Legs swelled and gained 6 pounds in last last week from water. Avoiding salt justeans taste bud issues longer i guess. Doc said now im psychologically stronger, know i can get through it and think I knew what to expect -- just when the cumulative effects are coming bigger and harder so.. Need to proactively rest more....right kow i dont feel like doing anything else yet im working from bed...
Sleep easy, shall we?0 -
Steiner18-I'm with you on the runny nose thing. I, too, had the sores on the corners of my nostrils from all the running and wiping. Just whne it starts to heal up, or go away completely, it comes around again. I found something online called a SickySticky. It's like a chapstick for the nose and mouth. I use it just on my nose. It seems to help, somewhat, but my nose is so tender that initially, it hurts to put the stick up there. I have Kleenex, EVERYWHERE!!! The car, the desk, the tables, the nightstands, the kitchen, the windowsill by the computer. They're in my purse, my pockets. The worst part is getting out of the shower. I have to hurry, cuz as soon as I step out, I look like one of those snot nosed little babies with big ole buggs uncontrollably dripping down. It's a race. Kleenex and wet hands don't mix, but..............
And I hear you about the hats. I wear them out and about, but as soon as I'm home, they come right off. I like the air to get to my scalp, and I'm hoping that will speed up the new growth. Also, when I'm just sitting or watching the tele, I massage and massage. I'm hoping that will also stimulate the growth. I am so desparate to have my hair back. I never realized how easy it is to put my glasses on and take them off WITH hair. They glide right on and off. Without hair, the get stuck on the skin behind my ears. I have to be careful not to pull too hard or I'll break the arm off the frame. I think I feel a littel growth. It's not as stubbly around my hairline as it was. I always kept a slight bit of fuzz everywhere else.
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Yes, between my son and his allergies and me with my Herceptin nose we are keeping Kleenex in business! I order the jumbo packs from Amazon on a regular basis for him, but now it will be more often I guess.
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Sickofpink other than stiffness (and that awful nail crap) most of me SE didn't get more intense, just lasted a little longer with more treatments. Maybe a little more stronger but mostly it was increased time that was annoying.
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Maybe this is obvious and I'm saying something you all already are doing, but the tissues with lotion really make a difference in the wear and tear on your nose. I willingly pay more for them, and I'm a thrifty person!
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powermom, I'm too cheap to buy lotion tissues usually, but I may have to spring for some!
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Thanks iago, feeling a bit better today.
Does anyone know the facts about citrus and our chemo? I was off citrus due to digestive SEs (too acidic) but i have great meds for that now and aside from peeling fruit and eating things cooked to avoid bacteria ( despie neulasta my dr says no salad no fish no fresh juice from elsewhere) -- i heard a nurse tell a man that citrus can interfere with effectiveness of chemo - but forgot to ask if that is true for tch cocktail... And id love an orange!0 -
Sickofpink its Lago with a lower case L. Lots of folks think it's Iago but I'm not that literary.
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Got it lago, sorry!
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I've been putting Trader Joe's fresh squeezed orange juice in my Fage yogurt. I told the integrative physician at The Disney Center about it and she didn't seem to have a problem with it.
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sickofpink - I hadn't heard about citrus before. #5 was probably the worse one, was totally wiped out, I figured 6 would be worse, but it wasn't, maybe just knowing it was the last made it better. Be kind to yourself - I did the work from bed thing, the one regret I have is that I wish I had just gone on full disability starting from my surgery, all the way through treatment - I waited until radiation to do that, then they "laid" me off at the end of my radiation anyway - all that for nothing. I have ended up on disability though because my side effects haven't improved to a point that I could work again - mostly pain and fatigue. Not common!
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LindayKR Sometimes it can take up to 2 years PFC for SE to go away. I still have the numb heel but it is much better than it used to be. My 2 years was up 2.5 weeks ago so I know this is it. I can live with it. I hope you improve over the year.
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LindaKR, Have you ever tried the curcumin/bioperine? (I know, I'm a broken record when it comes to the stuff but it's because it made such a difference in my pain).
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Lago - thanks, my 2 years PFC was September 2012
I was healing after chemo, radiation, had increased pain with the AI, and the improvement leveled out about 7 months PFC, I think I was still on Herceptin, and just never got better, changes some, but.... LeeA, no I've tried curcumin, but not consistently, but never curcumin/bioperine - is there a special brand?
My PCP had me on Effexor for SE's (pain, neuropathy, hot flashes, depression) (I also take oxycodone for pain), I've been weaning off of the effexor for about 6 weeks now, still having issues, and am afraid to start even a supplement until this E-f---kor is out of my system and I have no residual SE's. I'll ask my PCP tomorrow when I see her when she thinks that will be and about trying the curcumin/bioprene. Becaue I'm really sick and tired of feeling like crap most of the time.
I did go swimming with DD this morning, the pool was warm, the showers were warm, we had a nice relaxing, stretching swim and chat - I felt so energized when I got home, now it's been an hour and I'm ready for a nap.
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Linda - I replied on the Triple Positive thread but I'll reply here as well -
Here's a link to what we order:
Doctor's Best Curcumin with Bioperine (120 count - 500 mg)
I was having a lot of pain in my hip until I started taking this stuff (above). I didn't start taking it for the hip pain - - I started taking it to try to kill off cancer cells (before I knew if my lump was malignant). The hip pain going away was an added benefit that I realized had happened little by little until I just didn't have it anymore. I had to go off of it about a week before the BMX and sure enough . . . by about the 3rd or 4th day in the same old hip pain was back.
It hasn't been as bad since being in chemotherapy but I wonder if that isn't due to the fact that chemotherapy can act as an anti-inflammatory.
Anyway, I'm sorry you're in so much discomfort. It starts to be such a rat race - trying to find something to make it go away. My mom takes way too much hydrocodone (vicodin) for her joint pain and the thing of it is - for her, all it does is mask the pain and eventually it doesn't even do that as well. She has a lot of constipation issues which seem to be related to that med. Not to mention senility (I can't determine whether or not it's vicodin-related or actual Alzheimer's and she refuses to go to the doctor even though he's been calling in this prescription of hers for years...*sigh*). BTW, curcumin is supposed to help stave off Alzheimer's as well! I left a bottle for her but I'm betting it's still sitting there on the kitchen table where I left it back in September. I have some big problems looming right now as I am an only child and she is 2000 miles away. When it rains it suuuuure does pour.
Oh, one more thing - my father-in-law has started taking the Doctor's Best curcumin as well. He's not much for supplements but within the last month he was told he would need surgery to rebuild his entire spine! He went to another doctor who said that wasn't necessary but in the interim he started taking the curcumin. Now, he and my mother-in-law are planning a trip to Costa Rica! Apparently he's feeling pain-free enough to go!
ETA: I've always heard swimming is one of the best exercises you can do. We have a pool but I get so darn cold that I hardly used it last summer. I'm hoping my metabolism is different this coming summer. I'm glad you were able to go today!
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Hiya - I know it's been ages since I last posted here (October 2012). During my bad weeks, I just didn't want to do anything at all, even browse on the computer and during my good weeks, I was too busy cramming in all the stuff I was too apathetic to deal with the other weeks and not wanting to think about chemo at all.
My last TC was in November on the day after Thanksgiving. It almost seemed like that one was the worst to get through. By #6 it seemed like my sense of taste was screwed up full time and my leg muscles were aching a lot pretty much all of the time too. The nausea had finally been gotten under control but at the cost of more meds that just made me feel even more 'drugged' so I'm not sure it was a great trade off in retrospect.
I never did buzz my hair though by December, I really didn't have much left to show under the scarves/bandanas that I wear. I liked the semi-normal 'look' of having some hair peeking out under the back of the scarf and most people told me that it didn't really look like I'd lost my hair because of that. Around mid-January I started noticing that it seemed like my hair was starting to grow back. By now it is around 1/8 of an inch or so but I still look pretty bald because it is blonde. I will still be keeping my head covered for a while yet. I never lost my eyelashes and my eyebrows only thinned a bit. My nails still look fine though the pale arc near the base that was always very small now reaches past the halfway point up my nails.
I had some leg swelling on the last chemos and some really bad foot and leg swelling almost 3 weeks after the last chemo. My dr gave me a few doses of a diuretic to help me get it back to normal and that seemed to work though I'm still having some weird feelings and pain in my toes.
I've had two herceptin only treatments now and those are so easy. The only real SE I've noticed after those is a couple of days of slightly weird taste in my mouth and a different odor to my urine. I try to drink a lot of water to help flush it all out of my system.
I do have the watery eyes and runny nose that many have talked about though the eye problem seems to be mostly gone. My runny nose is occaisionally annoying but not as severe as some seem to have it.
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Jinkala, thanks for coming back and sharing your experiences with your last chemo! I had my last one today and am hoping to keep what little eyebrows and eyelashes I have remaining. I buzzed my head but wonder if I could have left it longer and just let it thin out. I didn't lose all of it, but have several bald patchy spots. But I wonder if they wouldn't have been noticeable with my hair a little longer and some careful styling. Oh well, too late for that now I guess! I noticed in your signature line it seems like 2012 was kinda rough on you with several diagnoses. I hope 2013 turns out to be a much better year for you
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yay for steiner and jinkala for being done with chemo!
steiner - by the end of chemo I did not lose any more lashes and brows, what I had lost by then was all I lost. I kept fairly normal looking brows all through chemo, lost all the bottom lashes and 2/3 of the top ones. I did not cycle with brows or lashes (losing and growing back several times) and I too never lost all my hair, but it did seem to grow back a little more slowly than some of the others in my chemo group. I just started to grow some additional brows within the last couple weeks, 18 months PFC - I now have to pluck the strays! I also seem to be growing some new hair at the hairline above my forehead - weird, huh?
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Jinkala, looking at your avatar photo it looks like your hair started out quite long. Did you cut it at all prior to chemo?
I had my shoulder-length hair cut to a bit shorter than the length of Lisa Rinna's (actress) hair because it started falling out at shoulder-length. The day the stylist cut it she said I wasn't losing any more hair than many of her non-chemo clients; however, a few days after the second chemo treatment it started falling out in earnest. I took the clippers to it but didn't shave it all the way down and then tried a second time but still didn't shave it all the way off. What I did take off eliminated a lot of that weird scalp pain and I haven't had any of that since.
Now, I am left with about this much hair (link to a picture of a baby): http://1.bp.blogspot.com/-hGUFDP675_s/TxKuLLQh6zI/AAAAAAAAAaQ/SAAMZByG3Is/s1600/DSC_6569+3+months-w.jpg
I brushed through it today and very little of it came out.
Now I'm wondering if what's left will take a hit with the third chemo treatment or if this will stick around through all the treatments.
SpecialK - I recall you saying you left about a 1/2" of hair when you cut yours off. Did that 1/2" remain?
Also, big congratulations to Steiner and Jinkala on being finished with chemo!!
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LeeA - most of it did - by the time I was done with chemo my husband said it looked like someone rubbed a dust bunny on my head. The problem with that remaining hair is that it is very damaged by chemo so it really has to come off. My hairdresser has had a number of clients who have gone through this process, so I trusted her advice that I would have to cut it more than I wanted to, so as not to look like a Chia Pet. My hair seemed (to me) to come in more slowly than some of my fellow Feb 2011 chemo friends. A few posted pictures of their growth and I was a little panicky because of the permanent hair loss possibility with Taxotere. I was relieved when it started to grow and I did go "topless" in October, chemo ended in June. I was a natural blond when I was young, and I knew I was now mostly gray but it was interesting to see my hair basically all gray. We gradually colored it after it was longer back to the color in my avatar and my hair is now almost reaching my shoulders at 18 months PFC. Here is a pic from October:
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"Jinkala, looking at your avatar photo it looks like your hair started out quite long. Did you cut it at all prior to chemo? "
My hair was down past my waist when I got diagnosed but I had it cut to right about shoulder length prior to my surgery because I wanted it to be easier to deal with with a limited range of motion post-surgery. I think I lost a bit more with each treatment. I look pretty much bald right now since my hair is so light you can't see it unless you get really close.
I usually keep my head covered except when I'm going to bed because it still kind of jars me to see myself bald in a mirror. It just doesn't look like 'me' - unlike seeing myself with a scarf which doesn't bother me a bit as I used to tie bandanas over my hair at times.
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SpecialK you look great gray!! Mine is coming back gray in the front, darker in the back. I'll probably color it once it's back in fully. I don't want to damage anything now though.
Has anyone heard of or used Latisse to help lashes grow back faster? I was at my PS getting a fill on my expanders yesterday and noticed their Latisse info board and thought maybe that might help expedite the return of lashes. My bottom ones are nearly gone, top ones very thin.
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steiner - thanks! I kind of liked the gray, but I feel like I look younger with it back to blond. There are a couple of ladies who have used Latisse, try typing it in the seach box and see what you come up with. I know a few have used Brian Joseph also. I thought about Latisse but hesitated because of the possibility of turning blue eyes brown, although I think that SE is rare and only if you paint the stuff totally in your eye - but you know someone has, lol!
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SpecialK, thanks for posting your photo at four months PFC. You look equally great with gray hair! I'm glad to see that you had full coverage at four months.
Had the chemo 1/2" hair (or remnants of 1/2" hair) been cut off in the October photo?
I saw the photo taken with Michelle and her friend and your hair does look just about the same as your avatar photo.
It's been so long since I've had short hair, well, now, little to no hair, that I forget how long it takes to grow out. It always seemed like a long process the few times I went a little crazy and got it cut short (I was always sorry when I did).
Also I ended up getting the Anastasia brow kit and really like it. I think you had recommended that at some point on one of the threads.
steiner - this morning I was going through some of my many BCO screenshots and labeling them and found a post about a generic (?) form of Latisse. The poster (I can't remember who it was) said that it was far less expensive than the cosmetic Latisse and her oncologist ended up prescribing it for her. I saved the post because I would prefer to not add yet another doctor's visit into the mix right now, i.e. dermatologist. Editing to add: Here's the link to the Lumigan/Latisse post. It was posted on the Hair thread so you've probablys seen it as well: http://community.breastcancer.org/forum/69/topic/707348?page=602#post_3380894
Jinkala - yes, I agree completely - it is very jarring (great word for it).
My favorite cover for it right now is a striped gray/black/white ski cap I bought at the 99 Cent store the other day. It feels a little less tight than the Buffs, although I like those as well - but for around the house and going to walk on the track at the gym, this hat feels best. Ha ha...maybe I should get a ski mask!
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LeeA - yes the remnants had been cut off in the photo I posted, and the hair had been shaped a bit to make it look like a style of sorts. I PM'ed you too.
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I really like it the style and thanks for the PM.
I'm going to have to find an interim stylist nearby. The person I've been going to for 13+ years is 90+ miles away (long story - and long drive!). At some point I'll start going back to her so she can highlight it again (crossing fingers).
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