Chemotherapy for Stage IV
Comments
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Ladies on Abraxane: when did you lose your hair?
I am on day 11. I have Abraxane weekly on Wednesday and will have it 3 weeks out of 4. My head started hurting immediately - you know that awful scap pulling feeling like you wore your hair in a too-tight ponytail for too long? But, not a hair has fallen.
Last time I lost in on day 14 exactly but I only had the scalp discomfort a few days before.
I've read lots of people online who only had thinning, or others had it fall out right on Day 14. I would love for it to just thin but then do I have to put up with this scalp discomfort? Does that go away?
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Hi all,
Just wanted to wish everyone a very happy Easter! I hope you all enjoy your weekend and your families:)
Sorry about my post being misunderstood about taking a break from the boards. What I should have said was I'm not doing so great lately and I just don't have the energy to pop on each day. I do get email notifications and try to stay up to date with each of you. I'm constantly praying for each of you! I wish I was like some of you sweet souls who can do it all! I'm having a hard time just keeping up with dr appts and getting showered each day! Funny I set and dread the energy it will take to get cleaned up but once I'm in there it is heavenly. The small pleasures in life lol. So sorry for the misunderstanding. Just think my kids need to be my focus now. I will pop in once a week or so to say "hello" to everyone:)
Cool I've been on abraxane for two months now and I have tiny..tiny peach fuzz now. I've actually heard from the nurses most people don't lose hair on abraxane. I was bald from my previous chemos.
Hugs and prayers to you all0 -
I made it through the lst two weeks on Abraxane and remember I thought I am not going to lose it, kept tugging on it and it not a hair came out.....then after about 19 days, it started and I ended up bald as a billiard ball. Everyone is different though. I know before it came out, I was outside one day and when the wind hit my head, it actually hurt. There was a lady I met in the chemo room and she had been on Abraxane for something like two years and did not lose a hair.
Always good to see you posting, Kimber. You are right to concentrate on your kids and enjoy them. Are you back here now or still overseas?
Happy Easter, everyone. Marybe
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Hi marybe ..you always make me smile! We are stateside sweetie...I think you got me confused with the military family I was helping from Germany:) But no worries we loved all the time we did get to spend in other countries. We have been stateside for almost a sixteen months now and my kids are still getting used to the differences. Silly things like we say we are going on holidays not vacation, we call the bathroom the washroom(drives my Dad crazy..lol), my kids say "EEH", they call ramen ..Japanese noodles..makes it sound so much more expensive..hehe and the variety of restaurants they never got to eat in
I think it is a hoot..they went to a chick filet a week or so ago with friends for the first time! Silly things like that ...that we all take for granted. I think it makes them very well rounded
Hugs to ya sweetie and happy Easter to all!0 -
I started to lose my hair around day 17 of Abraxane. Then had to skip two weeks over neutropenia. Most of my hair fell out within a week or so but I didn't lose it all, maybe due to the 2 weeks off. Never went back to the original 3 weeks on 1 week off schedule. Have been on an every other week schedule. TMs are down by a lot. Getting scans next week.
The sore scalp went away after the hair fell out. The hair that remained has been growing briskly. My doctor insisted that I wouldn't lose my hair, so I guess a lot of people don't lose it.
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My doctor said I wouldn't lose it either but the brochure they gave me said 90% of people on that therapy lose their hair between 14 to 21 days. And, it sure feels like it's going to come out. Of course, I have no idea how I'm being dosed. It's so uncomfortable, and I'm constantly scratching my head. I'd be surprised if I kept it, but that'd be fine with me!
Kimber, I have those days. I'm taking baths now more than showering so I can sit. The hot water is soothing on my aches and pains. It's so hard when you have things you used to enjoy and now have no energy for. I have family coming for Easter and the thought is so tiring.....0 -
total hair loss for me at week 3..
i just knew it.. it was sooooooo fun to have hair for a while.
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My doctor said my hair would "thin", she denied it would leave. I think she plays down the side effects in an effort to get patients to say yes to the chemo.
i'm dreading the hair loss but sure hoping the abraxane will work
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I lost my hair at week 3 too. Bummer.
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I lost my hair between weeks 3 and 4 on abraxane. Started getting neuropathy about 5 - 6 weeks in. I had some joint pain on Abraxane too, I felt like the Tin Man from the Wizard of Oz.
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It's really funny, but I've been reading forums all over the net, and many, many doctors tell their patients that their hair won't fall out on Abraxane. And yet, invariably, it does.
A few people get thinning but when they describe their thinning, it sounds like hair loss to me. They have to wear wigs as they lose 70% of their hair. I didn't lose it all on TCH either but I looked like I had mange and shaved it down.
I wonder what information doctors have that makes them tell their patients that they won't lose their hair? It's even in the packaging that patients lose their hair, so what lecture or piece of literature did they all read that isn't out there?
Maybe I'll ask my onc next time I see him. I suspect it may be dosing or something and some people really don't lose their hair at the dosages prescribed. If my scalp irritation is any example, I won't be one of them.
The only other thing I can think of is I will only have three infusions before I see my surgeon. Maybe he thought we would stop at three as there would be a surgical solution. Maybe after three tx some hair will hang in there.
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I start the abraxane tomorrow. At this point, I no longer care about my hair. I'm so worried about this chemo working, I just want it to work.
I couldn't concentrate on anything today.
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i totally lost my hair on wk. 3.. i just knew it in spite of the hopeful 'warning' I'd have significant thinning.. like 20 hairs on each side of my forehead is worth a darn.
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When I was on Taxol I lost my hair around 21 days. I had a fuzzy head. When I was found I was allergic to it and changed to Abraxane, my hair started growing back after 3 months on it. I freaked out that it was a sign my tmt was not working but the onc nurse and onc both said that your hair can come back when chemo is changed. Was told not everyone loses their hair on Abraxane. Dawn.
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Soleil, I hear ya. Here's hoping the chemo works for both of us.
And, tomorrow is Day 14 and I'll get my 3rd tx. Just a few minuates ago, I was scratching my head and a few hairs dropped onto my iPad. I did it again and a few more dropped. And, just a few hours ago, they were all firm in my head, and I know this because I've been obsessively checking.
It is so WEIRD how it happens and how sudden and quick it is.
Haven't needed to shave my legs in a two days, so I guess this is the start.
I don't want to be bald, but of course, it is a good trade-off for a working chemo.
China, last time I lost my hair, my hair started growing back before I was done with treatment.(Taxol/Carbo). Kind of odd and I wondered the same thing, if the tx had lost its effectiveness, but apparently it's not that unusual.
Sigh. What we go through.
We'll see if I lose it all. Last time it got so messy I had to shave it. We'll see what happens this time.
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Baldness is a good trade off for working chemo. What bothers me is the not knowing. So, I take abraxane for 3 months, then I find out if its working. That is what is bothering me right now.
The doctor said if I have pain, she can order scans earlier than three months. She said it repeatedly, I think she was hinting. I am going to do this. I need to know if the Abraxane is working before July. I think I'll have pain symptoms in early June
I'm pretty sure I'll be obsessing over the hair loss in a few days Cool Breeze when do you find out if it is working?
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i have a scan on the 12th (tomorrow!).. actually am looking forward to it. (who'd a thunk)
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I have a scan tomorrow also. I'm expecting good news as my markers are down substantially.
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So I start chemo again starting May 9th....Taxol. I've been on it before and know the side effects...and yes I will be bald.....If not by the end of radiation next Friday! Can't wait...unil the radation is over that is....the Bleach smelling is gettin on my nerves!
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Apple and Skidoo...Good Luck! Good Luck! You must be nervous girls today, but tomorrow will be sunshine, I can feel it.
And Sharon, Good Luck to you too. Waiting is rough, isn't it? I had a month off of chemo, doctor said I needed a month off in between. First I felt just great, like my old self. But as time progressed I felt more pain in the liver. Scary... Last week, I started feeling nausea creep into my day. ..Scarier... Woke up and the bed was spinning. Terror!. I was afraid the cancer would blow up and blow me out before the month past.
Funny, now I had the chemo and I feel hopeful today. Chemo is terrible; its sickening, I will lose my hair, I will be tired, might get this awful nerapathy thing, but its a chance. Today, I feel like I have a chance. The Abraxane could do it. I'm hoping to hear that the mets are retreating. I hope to hear it for me, for all of you too!
So Apple and Skidoo, please post the happy news, tomorrow. I'm going to post mine in June. For sure, right after Cool Breeze posts hers
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Soliel505, What a great post. How you described so simply how we (or maybe I should say me for one) live and think. It is amazing and cathartic to see another express what you are also feeling. Thank you for sharing such an honest and insightful feeling.
I hope all your mets are running scared and diminishing quickly. I hope that for all of you reading through these posts.
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Jibb....look at Marybe...what....well....years anyway. But I get what you're saying. I told my kids, both adults, so diff, but not so diff...I said, 'wrap your minds around that I have X% of being here 3 years from now". But you kno what....not one of my docs thought I'd be NED this long. Coming up on my cancerversary, 1 year. But I celebrate it! No one has a crystal ball...we don't know, THEY our doctors, don't know. So I give myself 2 choices. That's all there is really...#1...wake up every day with the 'fatalistic' attitude. #2 - wake up every day like I'm gonna live on and on. I pick #2 every day and thank my god and my universe and carry on. I have my moments, don't we all, but I try really hard to supress the negative and regale in the positive. I really believe it makes a difference. I will keep you in my prayers, as I do all the BC's on this and other threads!
Love and Prayers to all,
Sue
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Yea Girls! Yes, there is life after chemo, after hair loss and after neuropathy. I lost my hair at 3 weeks, My husb shaved his head same day I did. Lost nails, lost eyebrows, lost eyelashes. The last is what I miss the most. Been 7 mos since last chemo and still NO eyelashes. Leg hair, pubic hair, back like weeds. Underarm n brow...not much. Eyelashes...Zero. Aches, pains, arthritis, neuropathy, all that.....still there. But...have been NED since Sept. and I will take all this other inconvenience over the alternative ANY DAY. This is what I hear alot...."I CAN'T WAIT TO BE MYSELF AGAIN". Guess what....that will not ever happen. So, like I said in the previous post....we got 2 choices.
All my love n prayers!
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Best wishes Sharont!
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My frenemy Taxotere
As I mentioned before, I've been having problems with swelling in my legs / ankles / thighs feet, to the point of making it hard to walk. After all the tests for blood clots and heart problems came back OK, we've been trying to treat the symptoms with diuretics (water pill or Lasix) to keep the swelling down. The lasix alone really didn't seem to do a whole lot, so we discontinued it.
A few days after the last taxotere the swelling in my legs went down; this time it did not. Then I started to get some pretty severe shortness of breath, which at first we though was due to my lowish hemoglobin (red blood counts). Just walking short distances would make me pant and gasp quite a bit.
Because of the severity of the shortness of breath, my doctor moved my general CT scan up a bit to see what was going on inside to last Friday. (This was the usual scan of chest / abdomen / pelvis). It turns out the extra fluid was (is?) pressing on my lungs and making it hard to breathe and my heart pound. Not good. So, I'm back on a double dose of lasix and breathing and feeling better. And peeing a lot of course LOL. Breathing is really underrated, you know what I mean?
So that leaves the question of what treatment to continue or do next. It's hard to walk away from a chemo that is "working", or at least controlling tumor growth. My tumor markers were down very slightly, and there was nothing new in lungs or liver, maybe even a little shrinkage of liver tumors.
But, I think my time with my frenemy Taxotere is at an end. The general swelling and edema is just going to get worse each time, I guess. So, I can either continue with Gemzar alone; team Gemzar with something else; or go on to something else entirely. I got the single dose Gemzar today, to complete this cycle before I ck in with onco in 2 weeks.
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Dear MJ - wow, it really is hard to walk away from a drug that is working for you, I know. Wish that you didn't have this disappointment to deal with, and sorry that you are not feeling well. Hoping that the docs will do their magic - best of luck, and thinking of you. SUE
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Soleil, I have a PET on the 18th. I'm going to SF to see my famous supersurgeon. We are doing a PET that morning and then I'll see him with the results that afternoon. My local oncologist put me on it to shrink 'em down so maybe he can ablate it or something. I had a liver resection and my left lobe is gone but one spot grew back in the right lobe, where they couldn't get to it surgically. They did a microvave ablation and we'll see if they can do something surgically again.
And, MJ, how awful you are having an SE that prevents you from getting your chemo. Here is hoping that they can find something equally or more effective that will stop that cancer in its tracks.
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i did avert a disaster.... my cute male nurse said .... oh i didn't know you had a port so i went a got stuck to access the port..
a few minutes later i was thinking.. i don't have a power port and said 'dude.. i don't have a power port - i don't think that stuff should go in so close to my heart and stuff.. do you think it is safe to put the radiation gunk (the warming stuff) in it?"
he was so grateful.......so grateful
sigh
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Apple, your story demonstrates how important it is to know what your treatment is. I meet so many people wh have no idea what their treatment is or what is dripping into their veins. Many can't name their chemo drugs. It's sad because who knows how many problems could have been averted, the way you did. I'm so glad you are smart and informed. I guess most of us are since we are here , but so many just leave it all up to their medical professionals, who catn make mistkes.
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Oh, Mary, so glad you said something to your nurse! Whew! I guess I don't know the difference between a power port (which I have) and a non-power port. Will have to look that up.
MJL, I had to stop the taxotere last August and was so upset. It was working. I learned from that not to complain to my onc too much about SE's because I'm so afraid I will run out of options. I begged him to oeave me on taxotere but he was worried my foot problems could become permanent. I'm on gemzar now with very few SE's so hope it is working as well as taxotere did. I've been NED since last summer.
Memasue, I like choice # 2 also. I want to be another MaryBe!! CoolBreeze and all your sisters who are having scans ... Look forward to good news from all of you!0
