December 2012 chemo group
Comments
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Hello ladies - I haven't visited here for a few days - I started to feel "normal" Sunday 12/16 after chemo 1 on 12/5 - so I've been in a mad dash to get shopping and errands and work all in before round 2. I go for AC#2 tomorrow... I see many of you have had your second tratment this week or will soon.... even though I think I did quite well I am nervous all over again tonight. But - it's another treatment closer to done !I realize I was very fortunate with the last round - my heart really breaks for one of you when I read about a horrible SE. My scalp is itching like crazy today.. I guess the inevitable is here. My daughter (12) and I had a great time playing with t-shirt wraps tonight! I don't know if I can actually go out with the flowers and butterflies she had me dressed up in - but it was fun. I still can't figure what my "thing" is for my head..though I get loads of compliments on my wig I find it very hot and uncomfortable! But - I worry that a hat or scarf make people at work uncomfortable or that the see me differently... I know that is very silly of me.. I should care less about what they think!
As always - reading all of your posts brings me strength and hope.
Peace out, girl scouts! (daughters line!)
M
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Day 11feeling good, looking for wigs tomorrow not to excited about that. My head has started itching so I know the time is coming to shave my head.
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My head has been itching too - but I also think I have some eczema under there. Anyone else wondering what their head will look like underneath all the hair? One of my boyfriends when I was much younger shaved his head and found a giant birthmark across the top of it. He complained to his mom why she didn't warn him and she said she couldn't believe he would be that dumb! I guess we're all about to find out. Day 12 out from FEC and waiting...
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Five cents, I have been thinking about what my head might look like too! I have psoriasis and my head is scaly. And I scratch it which doesn't help. I asked my hairdresser friend if I will still have that or if it goes away during chemo. She thought it would go away but I think she was just saying that. Don't think I will be rocking the bald look in that case. You see some kids who shave their heads and it's all lumpy and odd shaped! Hope mine isn't.
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Hopefully we will not see a 666 . Just kidding, trying to lighten the situation. Does anyone know when the itching stops, I think mine hurts so bad because my hair is so thick.. I wonder if black women have more pain too.
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Girls~I've been wondering what my head will look like bald. Is it scarred? Is it an odd shape? I guess I don't have too long to wonder. Friday will be 2 weeks since first chemo.
Oh well, I doubt I'll go topless anyway.
Blessings
Paula -
Paula, Friday will be 2 weeks for me also. I've been wondering the same thing, I have a mole on the top of my head.
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JenJen glad you got through round one. I hope you can get some sleep! the steroids jacked me up too, my MO actually lowered my dose for the next round. they made me jittery and anxious and I couldn't sleep for 3 nights in a row.
Dawn and FriendGwen, my friend was getting bad nausea from the Vit D. She was also taking it in combo with Tamoxifen which may have made a difference.
Bren I'm not looking forward to my 2nd treatment. I think it's because I know what to expect now for SE the days following
I hope your SE stay minimal and by Christmas next week you are on an upswing feeling better! -
Those of you who aren't sleeping because of steroids...Did they not give you Ativan to help with sleep on steroid days? If not, tell your docs you need it. They really don't want you missing so much sleep. Rest is part of recovery.
Blessings
Paula -
Hi sophiafred78! I am starting AC the day before you and I am looking forward to being able to compare notes. It is so wonderful to learn a little bit about what to expect from the wonderful women who started before we do and to have some sisters who are on the same schedule I am!
I went to see a naturopath today to get some advise about vitamins, etc. to help me get through chemo and manage side effects as well as possible. I'm especially wanting to make sure to do whatever I can to minimize cardiotoxicity from Adriamycin and neuropathy from Taxol.
One thing I thought I would pass on was her recommendations for mouth sores. She absolutely recommends the mouth wash many of you are using. In addition she recommended slippery elm bark tea and/or aloe vera juice.
Thanks again to everyone for sharing your wisdom, your challenges and your success. I am feeling confident that next Thursday and the following 16 weeks will be a manageable chapter in my life.
Much affection to all of you.
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Nicole~Did she offer any advice for protecting the heart from Adria/cytoxan? What about the neuropathy from taxol? I'm getting both of those, so I've been wondering.
I don't want to suffer the nail problems from taxol, but I don't think I can stand icing them. I used to work for a company where my hands were in ice a lot and it was awful.
Blessings
Paula -
sophiafred78- make sure that you let your chemo nurses know what you are taking in vitamins and other health products especiallly any antioxidants (proctect your cancer cells as well as normal cells) as they can react with your chemo drugs..write everything down for the pharmacy as to when they make up the drug...at my first chemo the lady in the chair across from me almost was cancelled until a week later because of what she took the day before..
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For those having problems sleeping, try melatonin... It's not a harsh sleeping pill, but works very well.
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Last night I literally felt like I was having an overdose, I have never taken so many drugs in a day (4 steroids, 1 xanax, 1 celexa, 2 Tylenol, 1 claratin, 1 nausea meds (plus to 2 at injection) and 3 bags of chemo drugs). My goodness, this coming from a mom who pisses and moans about taking tylenol during PMS
Yes, I have 3 sets of nausea pills in order of severity. One is none drowsy, next is semi and the last the Avatain (sp) is the big guy.
Hoping to get the kids to school asap, eat some toast and sleep and drink a shit load of water.
I take taxetore (sp) and they made me stick my finger tips in ice water during the hour. Once they got numb I couldn't really feel it.
The girl next to be was on her 4th round of of chemo and we talked for a long time, she has the same treatment as me (she is TN) and kept saying get those fingers in that ice water. She was so nice and gave me all sorts of tips, advise and phone number. She was a blessing, her name is Renee.
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So here's my question... Started chemo on Friday the 14th. Was doing ok, but the anti-nausea drugs caused a little constipation. I'm taking zofran and compazine as needed, and - honestly - I've been taking them both pretty regularly. They explained that I could take whichever one works best since one works on the brain and the other the stomach. But with the queasiness I've had, I was afraid to totally skip one or the other. Anyway, the NP told me to take a gentle laxative if I go for more than a day or two without a BM since zofran is known to cause constipation. Well - Monday afternoon I decided I better take something, so I took 2 little Dulcolax pills. Big mistake. My tummy started to rumble about bedtime and through the night I had diarrhea and vomiting. So weak and sick that I spent most of the night on the bathroom floor. Ugh... Feeling lots better today after spending yesterday trying to recover. But here is the big question. If you need a little something to help you go, is there a better way that won't bring on horrible diarrhea? Or was my timing just bad and I should have waited a day or two past chemo? Would a stool softener be better? Has anybody else had this problem with the anti-nausea drugs? I don't want to go through that nightmare again if I can help it. Sort of a gross topic, but inquiring minds need to know.
Thank you for any advice! -
Wow, I went to bed early last night and missed a ton. You ladies were busy last night!
My itching and bumpy head lasted about a week and started to feel better after I got my hair buzzed off. I still have a fuzz on my head and have not totally lost all my body hair. I guess it won't be long now since I just had round 2. I was worried about how my head would look bald too, since I have a flat spot on the back of my head. I also discovered several scars from Chicken pox that I had no idea I had. Well it is what it is and at least I can cover it up with a cute hat or wig when I go out.
The steroids really have not bothered me as much as it seems to bother some of the rest of you. I did try Ativan but my body did not like that drug. It gave me a massive headache, made me very dissoriented and unstable on my feet. I know that is not a normal reaction for most but I had MO prescribe Phenergan instead as I know it works better for me.
Paula, as for trying to ward off the neuropathy and the nail problems, I got 2 insulated lunch bags, put a small frozen ice pack in the bottom and 2 small bags of frozen peas for each. Then during the taxotere infusion, I just put my hands in the lunch bags between the frozen pea bags to keep them cold. It really is not all that bad. For the feet, I got those reusable soft frozen ice packs, some even have a velcro strap, and wrap them around my toes and balls of my feet. Of course I have no idea if all this will work, but I figure it is worth a try. There are some studies that show positive benefits to keeping the hands and feet cold during Taxol/Taxotere treatments. I know you can buy special frozen gloves just for chemo purposes but when I looked into them they were over $100. The frozen peas were cheaper! I just throw them in the freezer when I get home and reuse them the next time. Of course we always look like we are moving in everytime we go to the infusion room, because we have the cooler with all the frozen things and a big bag with pillow, blanket, ipad, magazines, medical folders etc. Oh, well, they tend to remember us!
Steiner - I actually feel better prepared for the SE's this time around. At least I know more of what to expect and I have a whole tray of of meds and other items to help counter the SE's. Last time I felt like I was calling the MO's office every oher day to get some new med!
More steroids today so I guess I will feel pretty good today and then the crash will probably hit tomorrow. I will go into work today for a couple hours to get caught up and then will not go in again until after Christmas. Thankfully my bosses and coworkers are very understanding and supportive.
Hope all you ladies have a great day! Each day that passes we are that much closer to being finished!
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MTJulie - I could never get a lumpectomy because I had, besides the main tumor, other 5 very small ones (but not invasive, those 5 were DCIS) and micro-calcifications all over half my breast (they called it multi-focal and multi-central). I was very afraid of lymphadema, I fought for keeping my nodes but the doctor's opinion was stronger than mine. It's been 3 weeks from surgery and I allready have it, I'm doing physical therapy.
Did anyone else here (with Adriamycin or Cytoxan) got an "equilibrium radionuclide angiography"?? I'm doing one of those tomorrow. I don´t have any heart problems, I think they just forgot to do an EKG before surgery (left mx) and now they can't, so they told me to do this. Why don't I just give them all my money, maybe they'll stop thinking of more exams for me to do
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Duckee, you might want to try the stool softeners twice a day and maybe even add in some Benefiber while you are on the Anti nausea meds. Once you go off of them, you might not have the problem with constipation anymore. I feel for you, I spent a night in pain on the bathroom floor too. Not fun! Once I finally figured out he right combo so as to not have the big C or the big D, I did much better. Also eating a yogurt with active cultures once a day may help.
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Duckee, I did the same thing as you, worried about c , took the tiny little pills and was on the toilet all night. I am wondering if I might have some sort of bug, since my stomach has hurt for three days. This is the 8th day since my treatment and I am wondering what to expect the next two weeks till my next one. Do we get a week to feel "normal" before the next one?
Sophia: so sorry to hear you are already dealing with lymphadema. That's just not fair when you are already going through so much. And we really aren't in much of aposition to argue with the doctors when they tell us things. Just have to put our trust in them as much as possible. -
Hi ladies! Sophiafred and MTJulie - I opted for the double mastectomy because basically... I wanted them to match! At 48 they were beginning to get a bit droopy so it was vanity and comfort that had me do both. I had two lumps in my left breast so the BS felt a lumpectomy wouldn't have left me with much. I didn't have tissue expanders either but went straight into reconstruction with silicone implants and after about 5 weeks of minor stretching discomfort I feel completely fine. No regrets.
Duckie - my MO suggested using Miralax for constipation which I drank in coffee on days 2 and 3 post first chemo and it did the trick.
I think my sniffles are just a SE from chemo and not a cold so hopefully no problems with low WBC.
It's day 13 and hair is completely intact. The calm before the storm...
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FriendGwen - I know what you mean, my right breast at 34 wasn't droopy at all, but after so many exams and surgery to her "sister", and not wearing a bra for a long time, she's looking very droopy and sad... It's like she's thinking: "Oh no, I'm next"
MTJulie - Thank you, yes lymphoedema has been my biggest problem since surgery. I wish I was able to "put my foot down" and say no to a doctor, at least once.
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Hi, I started my first round of 8 biweekly rounds of chemo Dec 3. Had my second one two days ago.
I feel like hell. Get extremely nauseous right after I finish the infusion, despite per and post infusion nausea meds. Steroids to help with nausea (probably the only thing keeping me from throwing up) are doing a number on my emotions. Right now I am crying, just like this time last week (and the crying that just goes with dealing with this. Hair falling out, etc.
I am too sick right now to do anything distracting and the steroids interfere with sleep rest. I know I will get 4 days or so respite by the end of next week, hard to get a perspective right now.
Has anyone else had emotional effects from the steroids.
I'm on adriamycin/cytoxan for triple negative right breast cancer for the first four rounds then switching to taxol. Mastectomy and reconstruction to follow.
Thanks, Peggy (PeggySull) -
Peggy~Im taking the same treatment as you. Mine are every three weeks. I didn't have any problems with nausea at all. I didn't to take any nausea meds at home. I only had one day of the blues, funk, depression, or whatever you want to call it. It was the steroids leaving my body.
Absolutely call your oncologist if you are still nauseous so they can give you something that works. They don't want you sick. They want to hear from you if you're having problems.
Did they not give you Ativan to take at bedtime on steroid days?
I'm 4 days behind you. I've been back to normal for about 5 days now. Even my taste is normal now. Thank God I have another 9 days to enjoy before next chemo.
CALL YOUR ONCOLOGIST!!!
Blessings
Paula -
Hi, thanks for responding. Yes I do have the Ativan for steroid days but clearly not doing the trick.
I tend to get nauseous from ANY meds with that possible SE but I will let the oncologist know I'm still having nausea. In fact I'll call right now.
More later...
Peggy -
duckie - you may want to try Miralax. It is, I believe, more gentle. In fact, some docs recommend it daily for children who have problems with constipation. You dissolve it in a drink to take it.
bren - I didn't notice the effects of the steroids either the 1st time; we'll see next time. I may ask about the ativan; they gave me zofran and phenergan (the phenergan affected me sort of like the ativan did you).
Vit D - I must have missed something. What is the Vitamin D megadose for, and is it something the oncologist precribed? I take 4000 mg of D3, according to my PC doc's instructions.
Day 13 for me, too, and no shedding so far. My husband is convinced it won't happen until after the 2nd treatment. Time will tell!
Bren and Gwen - It's always great to see your faces on here and read your upbeat (and otherwise) posts. Thanks for your presence.
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THank you, everyone, for your laxative advice. So is the "stir in" fiber like Miralax or Benefiber a little more gentle than the pills? (I've never really used this stuff before, so I'm clueless.) I'll try a stool softener next time maybe. On the up side, I decided to see what would happen if I didn't take the anti-nausea meds today since I was feeling better when I woke up. And so far, so good! Hooray! Maybe I'm rounding a corner, and - without the anti-nausea meds - my tummy will get back to normal. Thanks for the advice, everybody. Hope you all have a good day today.
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Day 15 for me and the hair is coming out in clumps. I find it so amazing that it seems so precisely the same time for most of us to lose our hair. I am having my hairstylist come to the house tonight and my boyfriend and two girlfriends here to make it fun - or at least not totally bad. I know it's inevitable but still so sad. I only bought hats and skull caps but still considering a wig.
Take care everyone - hope you are all having a good day with minimal side effects. Hope we all find something to smile and laugh about today!
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Powermom~I'm right beside you. Day #13 for me too. My head doesn't even tingle yet. I've even tugged at it. Nothing loose yet.
I never did take any nausea meds other than what I was given at my treatment.
How are you doing? Are you feeling like yourself yet?
Blessings
Paula -
Right there with you Runnergirl, mine is coming out full force now Day 15. I was hoping to make it through the work week but I really don't think that's going to happen.
Powermom, my MO didn't mention anything about Vit D. But I do know that mega doses like some are taking can only be done short term. 10,000iu per day is the toxicity limit for it. The RDA is 400iu, although I personally take 2,000iu to help prevent diabetes for which I'm at risk (thanks Mom!)
jenjen, my MO didn't mention anything about fingertips in ice water. I'm on taxotere also. I've heard some ladies on here using ice packs/frozen veggies to keep the fingertips cool during infusion. Maybe I should be more proactive about it but I guess I'm taking a "sit and wait for it" approach to my SE lol! Hope you're doing okay today.
Those asking about the steroids.....if your SE from them are bothersome (mine were!) let your MO. She cut my dose back for my next round. I'm hoping that will help.
I got a stomach bug this week. Must've been something I ate, 24 hours and it's said and done. But man I was laid out yesterday! Woke up at 2:30am puking and had an upset stomach and the Big D the rest of the day. I barely made it through my Herceptin infusion yesterday then went straight home and took a FOUR hour nap! I haven't taken a nap that long in who knows how long. Starting to see how susceptible my immune system actually is now. Don't think I'll be venturing out into crowds much anymore.
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Oh no Steiner, I hope you are feeling better! I'm not sure if some of the nausea & vomiting I had last week was from a stomach bug or not. Everyone else in the house got sick too; I was hoping since I was on day 7 that I was clear of the nausea. Today I was at the mall finishing my holiday shopping, had a big coughing fit and for a few seconds was worried I was about to throw up all over WalMart...it's like the nausea is just lurking down below waiting to be triggered.
Day 14 and I've started to lose some hair in clumps - but it's not on my head!
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