Chemo June 2010
Comments
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dsa outtahere-Well now we know you can't keep a Texan down! Glad you are back in the land of the living. Your attitude is admirable. I'd take you on my team anyday. You get kicked and punched and just get back up ready to go for more. That a girl!
Sherry- Man! You just can't cut a break! I am hoping you are racking up every conceivable SE known to man because you are going to finish with them in the beginning and never see them again! Glad you are out of the hospital. That's no place to hang out.
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Hello Ladies ~ I had my 4th round of weekly Taxol/Herceptin this morning. I have been feeling very, very rough today. The same meds, and the same pre-meds (Benadryl, Decadron, Ativan - Pepcid) but for some reason the 'chemo' loose stools really kicked in the past couple of days, continuing on today. My hair is starting to fall out, and I'm really not as ready for this as I thought....the big question to buzz my head now or wait until it looks really awful. It's coming out in pretty large clumps and looks just terrible. I cried about my hair, which I didn't think I would do. I suppose that maybe I just needed to let those tears flow....I worked 2 long shifts this past weekend, and they want me to do 3 12-hour shifts this week (I don't know if I will be able to do this!!! I will try this week, but if I can't, then I guess I just need to let them know that it's too hard). I try to positive, and today I just feel kind of blahhhh. Emotional roller coaster for sure.
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janny- I know you probably are trying to keep working to feel more normal. I think this is where you have to be a little selfish and take some time off. Your body is working so hard with all this chemo. Let's not even mention the emotional stuff you are going through. I'm sure they will find coverage. Twelve hour shifts are hard under the best of circumstances. I think you need to rest and keep strong for this big, hard fight you are going through. You need to take care of yourself, not others right now. By the way, Winston Churchill is my absolutely favorite hero.
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DSA, im so sorry to hear that, WOW!! im so glad your doing better, and i pray you will continue to do so!!!
sherry,im glad you are home and feeling better.
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DSA, im so sorry to hear, Wow, im glad your feeling better!!! i pray all goes well from here on out!!
SHERRY, im glad your home,i think the stress will kill me before the cancer does as well,lol
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Janny99-->Yes, like designermom said--take care of yourself! I took a leave of absence last year to fight colon cancer. After 90 days I was able to collect long term disability. Do you have anything like that? If you have several bowel movements a day you could try Immodium, or ask you doc for Lomotil. My hair is just starting to fall out--no big clumps yet--but I'm right there with you--it will be tough for me too
. I expect it to be gone by the end of the week. I have a friend on "stand by" with the clippers.Got my 2nd AC today. My port wasn't working for the blood draw so they put some "draino" type stuff in that eats away the protein that can build up in there. That's happened to me before. Worked fine after sitting in there for awhile. While that was doing its job, the nurse drew blood from my arm to do labs. All my labs were great! Told the onc about my pain a week after getting my Neulasta shot, and he confirmed that my neutrophils (wbc) were probably low at that time and the shot was doing its job! I also asked him about vit B6 and glutamine, as I have neuropathy still from last chemo. He said it wouldn't hurt...the studies aren't finished yet, so don't really know if it'll work. I think I'll try them both. My onc did test my B12 levels recently, and they were fine. He seems to think this means I really don't need the B6, but like he said, it won't hurt anything.
When I got there today, I was already feeling nauseated--started on the ride there (anticipatory nausea the onc called it). I remembered I had an Ativan in my purse. I asked the nurse if I should take it and she said absolutely! We talked about what a wonder drug it is! I told the onc I had taken one, and he said I should take it everytime I come.
One thing I forgot--my Emla cream for the port--ouch! Thankfully it only hurts for a minute. The arm stick hurt a lot less.
I asked for, and got, the orally disintigrating Zofran tablets. I like them a lot better for the mornings.
Other than that, just generally feel crappy! But not too bad. I'm waterlogged, and I'm eating some yummy cherries--trying to load up on fruit to help keep the bowels moving. I will take a Senekot tonight for sure.
Gonna go get my hubby some ice cream--in a day or 2 I won't be getting him ANYTHING! lol!
Blessings Ladies!
T
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Well, TC #2 didn't go so well today. After 5 minutes of Taxotere, I started to feel lightheaded and my chest started to feel tight. The nurse stopped the drip, and I immediately felt better. She gave me another bag of steroids---I do not want any more steroids of any kind! I was feeling fine, but she insisted. They had someone with a full taxotere reaction last week and she wasn't taking any chances. Blood pressure was up to about 140/80; had been 113/72. No rash, no itching, no throat swelling or itching. Overall, I had no symptoms of systemic reaction. She got the onco doc, who talked to me about changing to AC or CMF. I was not happy about it, but wasn't really processing all of it in the moment. She said either treatment would require a PICC or a medi-port and set me up with a surgeon on Wednesday after we discussed it. He can't put in a port until Friday.
After I got home, frustrated and annoyed, I sat down and started to process what had happened. As I thought through it all, it occured to me that maybe what we needed to do was not something as drastic as changing protocol. Maybe we just need to slow down the drip. I have done a bunch of research, and talked to my allergist. I am going to call in the morning and talk to her about trying again. If it doesn't work, then I will make a decision about switching to a different regimen.
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2nd treatment today, Cisplatin & Taxol. Plus I take the daily RAD001. So far so good. Have been really anxious, my son is getting married Saturday and the rehersal dinner is friday night. My family has been wonderful, they are really helping alot. I am so afraid I will be sick. I so dont want to ruin their big day by being sick and feeling yucky. PLease keep my family in your prayers and hope that all goes well for the Happy Couple.
Sandy
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Hi Meliss
I also had a reaction during chemo. Within about 5 mins of starting the cyclophosphamide I developed a mottled rash on both thighs .. weird! The nurse stopped it and just ran through more saline until the Dr arrived for a look. She recommended running the infusion at half speed ie it normally goes through in an hour so she set it to take 2 hours. That worked well, the rash got no worse and faded over the course of the day/evening.
So I think that the rate of administration is relevant - from now on I'm having it over double time - hopefully they will let you try that before altering everything . Good luck
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meliss-So sorry to hear about your reaction. That sounds scary. If your Onc is thinking of switching you to CMF, it is a much more tolerable chemo regimen. I am on CMF and my Onc didn't think I needed a port. It is not as hard on the veins as AC or Taxol or CT. I have another friend who is getting CMF X 8 and she doesn't have a port either. I know it depends on your veins, but it might be worth talking with your Onc. I don't know about you, but I can do with one less surgery! Does the Onc think it is an allergic reaction? If so, they can be progressively more severe. That may be why he is thinking about switching you. Whatever you decide, you will be fine and any chemo will take care of the beast. Hang in there and get some rest.
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meliss - that sucks that they stopped your chemo and sent you home. Reminds me of my 1st chemo that didn't happen. You get yourself mentally prepared for it and it's such a let down. Plus, if you're like me, you just want to get this chemo going, so it will be over sooner. I hope they come up with a plan. I don't take steroids the night before AC, so that might be a good regimen for you. Keep us posted.
Sandy - i hope you are able to make it through your son's wedding. Hopefully by then you will be through the SE's and can enjoy the day. My sister's wedding is 3 days after my last chemo treatment and it's on the other side of the country.
Designermom - it was 111 degrees today. I've lived here for over 10 years, so I've gotten used to the summers. That's what air conditioning and misters are all about!
TMarina - the hair shedding started this morning for me, too. I didn't feel any come out in the shower. But while I was drying it, it started to come out about 10 strands here and there, all over my head. Definitely not my normal daily shedding. I am getting my hair shaved off on Wednesday and getting the wig on. I used a bunch of hair spray this morning in hopes it would stick together and to my head! LOL!!!
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Hair today - gone tomorrow. 20 days after my first AC treatment almost all my hair has gone ;-( It was, for me, quite speedy once it started. I'd already had it cut very short. Today I went and had a shower and washed it with a mild shampoo and lost about 50% ! I'm anticipating the rest will come out tomorrow. I laughed at your 'stick it to your head with hairspray' theory kittycat. My delightful 17 yr old suggested that it fell out cos I shampooed away the dirt sticking it to my head. Thanks buddy!!
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Isla - I was going to start my post hair today, gone tomorrow. Then my chemo brain kicked in and I forgot all about it. LOL!!!! So, you're a few days earlier than me on AC. I am so glad I scheduled my appt for Wednesday. I am scared to wash my hair tomorrow. My entire head itches and I'm afraid to touch it!
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Meliss: I did TC 4 rounds and the first time I had a mild allergic reaction (skin rash swollen tongue) I had double decadron and slow infusion. The next time they added IV Benadryl and did the infusion very slow again, no problems..other than I was there for 5 hours. I think they took 2 hours for the Taxotere. I also took Benadryl at home if my tongue started swelling again. I didn't have nearly the reaction you did but I think that's because they did it slowly and they gave me the steroids IV before infusion began. I don't know it's a tough call I would have a hard time switching to a longer regimen. I could not do the AC due to heart issues. Good luck with your decision and treatments!
Good luck to everyone this week heading into treatment!!
Di
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Kittycat: I didn't wash my hair for the last week it was on my head. As it started to fall out in clumps I was afraid of the shower....and strong winds!! My head was so sore the week it was pouring out of my head but thankfully it goes away once all your hair is gone.
I never buzzed it my hair dresser talked me out of it. I had fuzz on my head the entire time but as it was falling out in random spots I swear I looked like Fire Marshall Bill!! It was so not pretty...Thank goodness I live alone. At first I cried but then I was like F*&% it...nothing I can do about it. Good luck with your next treatment! Hope it's uneventful
Di
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Quick Post about hair loss--
My ex-mother-in-law (we are still close) is a former hair dresser (very good at it) who has taken several classes on this subject--she says when it start to fall out just vacuum it--I fortunately have not had to vacuum my hair yet (too soon). It's cleaner and you don't have to leave the house to do it
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Brat352 -- Thank you for your reply. I saw it just as I was going through this thread. I have received some emails telling me a post has been submitted to a thread....but it doesn't seem to happen every time. I just hate to miss when people reply to me, as you did.
I hope you are doing well....
Carol
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Hugs to everyone dealing with the hair loss. I found a support group near me and it was great to meet women who had recently finished chemo, I couldn't believe how fast their hair grew!! Something to look forward to :-)
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Emmalou, welcome to the group! Thanks ladies, for your encouragement! Yes, the nodes have no chance against the chemo and radiation, do they? I'm finally feeing pretty good. Much better energy level. But DANG, this Thursday is chemo again and thus the start of the rollercoaster again! I'm expecting that my hair will start falling out after chemo this time. Thanks for being there ladies and have a blessed 4th of July weekend!
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Thanks ladies for posting about the hair loss! Mine is about the same as kittycat's--10 or so strands at a time. Some scalp tenderness, but no itching so far. I'm going to get it buzzed down (not completely shaved) on Thurs. or Fri. If I'm brave enough I'll post pics! I have a wig and 2 scarves, and I won't be going anywhere this week (except to get my Neulasta shot this afternoon). I have a box at the post office waiting for me with more scarves and another wig! The scarf shopping adds a little fun to the hairloss.
Meliss--> sorry to hear about your bad reaction. It sucks when things don't go as planned! Lots of good advice from the ladies on here--call your onc if you need more answers or are confused about what happened yesterday. Keep us posted!
T
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I cut about 2.5 inches off my hair last night. I can't get it perfectly even, but I'll just curl the ends. I figured if it really starts shedding worse, I'd rather it be close to all one length and look thicker. I have a ton of fine hair,so hopefully I won't look like Fire Marshall Bill by tomorrow! LOL!!! That's so funny. Ok, so I am not going to wash it today. I hate not washing my hair, but I'm so afraid of the shower!! LOL! As I am sitting here, my hair is falling on the computer! Pray that there is no wind in Las Vegas today!!!!
I'm getting together with a few survivors tonight. We had lunch a couple weeks ago. One of them just finished her chemo, but is still on Herceptin. The other is mid way through chemo. i met them here on BCO. They both go to my onco. There's another lady that is joining us that is another patient of my onco.
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Getting ready for my AC chemo number 2 on Friday. im pushing the water, fever seems to be gone now,
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Oh my - I haven't heard about "vacumming" your head! LOL! I had mine buzzed about 4 days after my first treatment. The "buzz" parts are still there and it's been 2 weeks since my treatment. No itching, tingling or further hair loss. I'm beginning to wonder if I should have left it on a little longer. I didn't think the hair loss would bother me that much especially since I got a very nice wig. But I have to say, the past couple of days, it is getting to me a little. Maybe it's just everything on top of each other that my emotional strength is beginning to wear down. Who invented cancer anyway? I hate it.
DesignerMom - you are the BEST encourager! I love you! I will post tomorrow after my visit to the onc - not sure if I'm getting 2nd tx or not.
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hi June ladies, Anyone doing Ginseng for fatigue? I started it, then i had a few days that I felt pretty normal so I stopped taking it the last couple days, and lo and behold this afternoon I feel like i need a nap again, so back on the ginseng I guess! I'm also doing B Complex and glutamine for neuropathy. I had 1 bout the 2nd night after my treatment, woke up with entire right hand tingling, but nothing since, so maybe it's working! I am not really a supplement kinda gal, so I find this all rather interesting.
Julia
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Julia2 - did your onco approve the use of supplements? Mine said no supplements, unless it was a multivitamin. I don't even take that. I'm trying to eat nurtitious foods. I was interested in the B complex and glutamine. I am not on Taxol yet. I guess I need glutamine when I go through Taxol (according to what I read - not what the onco told me).
Sherry - you are very brave to buzz your hair so early. It's inevitable, so you would have lost it anyway. I am not looking forward to seeing myself with no hair. I am staying far away from open flames today. I put more hair spray in my hair and perfume, too (since I didn't wash it). I feel like I have anchorwoman hair! LOL!!!
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After much discussion and consultation with others, my oncologist is not willing to try the taxotere again. I am weighing options between AC and CMF. Many pros and cons for both. My other choice is to switch to another oncologist who would try it, but there is no guarantee that I won't still have a reaction and have switched for no reason. Since I am HER2-, I am not convinced that AC is the best choice. But the CMF is a longer regimen. I will see the surgeon tomorrow about a port. He can put one in on Friday. I think I can start either regimen on Friday.
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Hi Gang, boy I have been off the boards a couple days and there is ton of activity. First, hugs out to all of you! I hope everyone with SE's is getting stronger every day and they are easing. Second, just a reminder we are all going to get through this. Even if it is one step at a time! Believe!!!
Cheyenna - so sorry you are having a tough time like that. Hang in there and hopefully you have turned the corner and are back on the smoother road.
Meliss - I can only imagine the anxiety it creates to stop the treatment and send you home. I think you are wise to give them a call tomorrow and see if slowing it down helps. Be your own advocate. If at the end of the day changing the regime is what needs to be done you can do it but be sure you ask the questions you want.
Janny - sorry it is so hard this time. A good cry isn't a bad thing. We can all use one and most of us have them. As for the work thing - I was out for two months from my surgery in April until last week. I returned to work and made out well but cannot believe how much my body tells me when I am tired. I have come to appreciate a "nap". Please hang in there and take care of yourself.
Sherry - you and I are having the same hair experience. I couldn't handle the "fall out". My hair was down past my shoulders. My husband and I made a good time of it and he shaved my head about a week ago. I have a cute little buzz cut going on. Man is it cooler - especially in the "hot flash" central I am apparently running! My sister came to visit this weekend for the first time since surgery and kept telling me I looked like Demi Moore in GI Jane. She thinks I should stay this way when I am done. Anyway, today was my 2nd AC/Bevacizumab treatment. No sign of hair change yet but I do feel a little like I washed my hair in shampoo with a bit of minty freshness. There is just a little tingle like you get when you do. Maybe a sign. Maybe not. Either way I am digging the hat's and scarves.
Well, today was round #2 of the AC/Bevacizumab. Made out well. Nurse actually blew my vein in my hand. It caused me a bit of anxiety on two levels - one you could have driven a truck into the vein so not sure how she missed it and then the thought that I only have one good arm (nodes in right are gone so no IV there). She then moved to a very bizarre spot on my wrist and after a bit of routing managed to land the line. It is in a place that is going to hurt like crazy but oh well. Other than a slight headache I am good. I took a little nap this afternoon and it helped with the headache some. Thank goodness for EMEND! that all I can sey.
Hope you ladies make out well this week and know I am praying for you all.
Hugs!
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Recovering form round one of AC. Had my treatment last Wed. and was moving along fairly well until Sat night. Thats when I kind of went out of comission for a couple of days. I spent all that time on the couch really light headed, dizzy, weak and in a fog. Not sure if thats "normal" or not. Spoke to the nurse yesterday afternoon. She told me if I still felt like that today I should come in.
I forced myself to go to dinner last night to celebrate my daugters birthday and I had a filet mignon. I had cut beef out of my diet since I was diagnosed in April. Well, that seemed to do the trick. I felt a million times better last night and today. Do you think it was the steak? And is it normal for me to be hungry all the time??
So today I feel better physically and I'm now an emotional mess about the hair loss thing. Can't picture myself bald. I picked out a wig and went to get it styled today. They couldn't really finish it since I still have my hair. I was disappointed not to be able to see the final product but my daughter and best friend assure me that its going to look great. Took everything in me not to breakdown in the shop. Guess I better start shopping for some hats! : (
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workmother, im sorry you were feeling that bad, im doing my 2 AC on friday, and worried as well, i got a cute wig that looks like my hair, in fact it looks better condition then my own, i hope you do better on #2 treatment...
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workmother--> Some of us have been having the extreme mind-numbing fatigue that starts a few days after chemo. It is totally normal, as is the weakness. Not sure about the dizziness? Good idea to call your doc with any questions! The steak may have helped because it has a lot of protein. Also just being out of the house with family may have helped too! Its normal to be hungry if you are getting steroids. Don't know why, but they make you hungry alot.
I just had my 2nd AC yesterday and my hair is starting to fall out. Not big clumps yet, just major thinning around the front. Still looks ok though. I have been dreading this big time! I don't think I'll look good without hair like some women do. Today I got my box from TLC with a wig, scarves, and a hat. I already had 1 wig and 2 scarves. When I got the box my 22 yo DD was here so I tried on everything. I was surprised that I didn't look too bad with no hair. Just can't be lazy about the make-up, and might by some more cute earrings. I've enjoyed shopping for scarves--its fun to add a little color and do whatever I want. I know I'm going to be REALLY self-concious the first few times I wear a wig in public. I just got cheap ones, and they look good on me, but I feel like everyone will know!
Hang in there! I have to shed some tears every now and then too, mostly at night when my brain won't shut off. Knowing that there are so many women going through the same thing really helps me alot! We'll get through this!! We are strong and beautiful, inside and out, right???
Love ya!
T
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