September 2013 Chemo Group
Comments
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Just popping on for a bit. Don't have much time to chat, but I found this in my never ending quest for info on my hair loss issue
http://www.dignitana.com/product/Information_on_the_Pivotal_trial.php
I didn't know if there is somewhere on here that this could go so that those who are close to these areas could possibly take part in the trial? I would have loved to have the opportunity! It doesn't say when exactly it is going to take place though.
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Hi ladies. I am new to this board. Just looking for - something, I don't know what. I am only at Day 9. I feel like crap and I feel even worse that I am not able to be out to dinner with m family tonight because the pain is bad enough I have to stay on the percocet. Now I'm second guessing my decision to go through with this. I was dx in 2009, had a partial ms and diep flap reconstruction, took Tamoxifen, and this summer they found new cancer cells under the skin in the reconstructed breast. We had a magical two year assignment in Europe that ended this summer with my husband's promotion and my new cancer diagnosis. I didn't do chemo or radiation before because my OncoType DX score was 16. The new tumor scored a whopping 14. I really thought I had dodged a bullet. Turns out the bullet was just waiting for me to return. My Dr. gave me the choice of whether to do chemo,offering her "soft" recommendation to do so. Given my past history of two melanomas (caught in plenty of time), I decided to kill whatever cells are lurking. Now? As I suffer through this and stare down the possibility of neuropathy, leukeumia, and everything else flushing poison down your veins does to you, I wonder if I'm as smart as I thought I was. I hate to complain. I can see some of you have it rougher than I do. I am asking God at the very least to ease up on some of the SE's for all of us. I just have two great kids (10 and 12) and I hate to see their little lives so disrupted by my cancer. And I am just pissed that I can't return to a normal life again. Ok, pity party over. For now
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I have a port. I had blood drawn yesterday for chemo start next week & it worked fine first time LOL Then I had to have an echocardiogram after that & it was used again for the dye injection.
Besides the chemo infusions & blood work before each one I will be having Herceptin for a year so definitely need the port.
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mamastewart, I am currently using the Penguin Cold Caps. The Digna Caps look really promising (and easier to use) but they weren't available in my area. There appears to be promising results with the Taxotere patients. I will post my hair progress if anyone is interested.
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I am interested but I am sure insurance doesn't cover the cold caps and there is no way I could afford to rent them. It looks like the Digna Caps are getting ready to go through the process of being approved? I didn't read much into it because I am sure it isn't an option for me. I just thought it would be nice for someone to have the option of going through the trial who couldn't afford it otherwise, especially another Taxotere patient.
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Hi Girls!! I am finally ready to get started, I have my 1st AC chemo this tues. - very nervous, but trying hard not to think about it & enjoy the weekend. All the unknown of how it will affect me have me on edge.
I also have a caringbridge site, it has been great!! Very easy to use. Here is my link if you would like to check it out. www.caringbridge.org/visit/nicolewells
MamaStewart - My heart goes out to you & I understand your feelings. My mom & I are not very close as her & my Dad divorced when i was 4. And she has decided to not walk this journey with me & my step brother also. They have never really been there so I guess I shouldn't really be surprised, but I guess you figuere people will step up when things like this happen, especially family!! But I guess, not so. God will send people your way, I know their will be people to step up & help you, don't be afraid to ask. Maybe your local cancer center would even have some suggestions or can direct you to some help. Blessings!!!
May God Bless each of you this week as you walk this journey!! Hugs to all, Nicole
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I had a port put in yesterday. It went smoothly, had some conscious sedation, so no pain. Very sore today. I'm told I should feel much better tomorrow. Told to leave dressings on until tomorrow, then steri strips fall off themselves.
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Hi Solution - I've been having horrible side effects as well...including neuropathy. I've been able to control the neuropathy with B6 suppliments (Dr's idea), 100mg per day, and doing a ton of Yoga. Bascially, any yoga inversion pose really helps (downdog, shoulderstand, plow, headstand if you can - I can't, lol).
But Gang, I'm really having a hard time with the steroids. In addition to making me both totally manic and THEN totally depressed....they've given me a huge, acne-like rash on my face. Seriously. I look like a teenager. It's beyond frusterating. Some of you have mentioned reducing your steroid dose...have any of you been able to eliminate it? At this point, my side effects from the steroids are SO much worse than any of my TC side effects.
(Started TC on 9/11/13....one down, three to go.)
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Just touching base. I had my first chemo on Wednesday and then the neuroblast on Thursday. It was bearable. I was so very tired, but I was able to manage. Today, Saturday, I am feeling the bone pain they talked about. I took Claritin the other days and did not feel any pain. Maybe next time I will take it for two days after the booster instead of one. Anyway, off to tackle dry mouth issues. yuk. Taste buds off too, but it has not stopped me from eating. :-)
Anyway, prayers and hugs out to everyone. We are all one day closer to the end of our journey. -
Hey Murphy!
I've been thinking about you today. Glad to hear you are hanging in there! Some take the Claritin for 5 days after. Don't know if that would help.
One day closer is right! -
Sdraugelis: I had a skin outbreak but they were more like whiteheads and some were kind of just fluid filled. I got them about 10-14days post chemo. I still deal with pimples, but just pimples so the whitehead thing was weird. I called my Onc and he said it was a really common side effect of chemo drugs, but NOT the one I was on. He said it was still a possibility though and prescribed me Doxycycline. It is an antibiotic to treat acne. It has cleared up already after just a few days. So, it is possible it isnt' the steriods. My steriod issue was with some major muscle pain from withdrawl. I never got the rush, although I would appreciate some extra energy! I dont' know what eliminateing them might do. I would think it is worth it to counteract any inflammation that could happen.
I think I may have the answer to why some people have painful hair loss! If you didn't know already, I shaved my hair into a mohawk and sported that for a little over a week. Why not?
So, last night when I got home from a friends and took my bandana (hair is in full fall-out mode and didn't want to leave sheddings everywhere I went, plus I am getting bald spots) well, where my hair was long on top it hurt HORRIBLY! The rest was absolutely fine. So, maybe leaving it long causes it to hurt for some reason? Just my observation. I know not many do what I did and don't have the opportunity to compare lol. I hope everyone is doing well and continues to. I go back for round two on Wednesday and am not excited about it at all. I am beginning fasting on Monday, as well. I was hoping to have the house cleaned and be ahead on homework before then. Instead the house is a wreck and I am actually behind on homework, and still no one of my friends and family are offering to help out at all. I just pray for the strength to do what I need to do to at least get by.
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Sdraugelis,
I got the breakout from the steroids on the sides of my neck and up behind my ears. and around my temples and forehead. It was mostly on one side the first time. It was bad on both the second and then not so bad the third and fourth, but that's when I cut back on steroid. I took two in the am and pm the day before, then two the morning of, and only took 1 the night of and morning after chemo. I wasn't having any allergic reactions to chemo though. I still have blotchy discolored skin where the acne junk was, but it is slowly fading.
MamaStewart--still keeping a good thought for you. My house is a disaster too. Feeling your frustration there.
Good wishes everyone. -
Vanessa: I got my port about two weeks prior to chemo. I was fortunate, as it was a very easy experience. It was painful tor a week after (my best advice is don't carry anything over the shoulder that has the port for at least a week). But it has been wonderful ever since. No pain from an IV, no needle sticks, amazing. I use lidocaine cream an hour prior to infusion and I don't feel a thing. I find it a miracle since I hate nedles and have tiny veins. I don't even notice it anymore.
Traci, thanks. I have felt crappy for two days now and its really a drag. Today I had a 100.4 fever and when I called the MO she said if the temp went up another point she'd give me an antibiotics. I'm just worried now that I'm going from diarrhea to constipation -- how am I supposed to know what to do for that? Ugh, so ready to be off the chemo train.
All the best to all of you. Here's hoping tomorrow is a better day. -
Lisa--one more to go and the train pulls into the station, yes? Wishing you a better day tomorrow and everybody else too!
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{{Hugs}} to all of us needing them! This chemo stuff is no joke, is it? Even though I think I've had it relatively easy, when I think about the last 3+ weeks, it hasn't been a walk in the park. Two days of nausea after each infusion, major fatigue, yuck mouth, migraine taking me to the ER, constipation, now mouth sores... Ugh.
Murphy - definitely take Claritin for 5-6 days, starting the day of your shot. I have done that and haven't had any bone pain at all.
sdraugelis - I asked about the steroids last week because I noticed people talking about them. I know they give me steroids in my pre-meds on infusion days. After my first infusion when my nausea drugs weren't cutting it, they called me in a prescription for a new nausea medicine as well as a steroid for 3 days. Those steroids were the only ones I've taken outside of the IV on chemo days. I think the steroid "crash" when I finished them contributed to my migraine from hell. I also didn't sleep a wink that week, even with medicine to help me sleep. I asked at my MO appointment last week why they gave me the steroids that time and if I needed them again, and she said it is just to "boost" my system if I need it, and to control any reactions to the meds. I'm on AC, though, and don't know if steroids are standard procedure on other regimens. I didn't take the steroids after my second infusion and I have felt SO MUCH BETTER!
mfm - wow, I'm so sorry you're going down this road again! {{hugs}} I can understand why you are second-guessing everything. However, maybe you can try to look at it as doing EVERYTHING you can to rid your entire body of any lingering cancer cells. It's not a cake walk at all... but coming out on the other side with all of the cancer gone? Priceless! I understand your feelings about your kids, too..... one of the things that was the hardest for me was knowing my husband has to care for a wife with cancer, and knowing my kids (mine are 7 and 11) have a mom with cancer. Looking at the big picture, though, me being around for the next 40 years is way more important than the next few months when I'm sick and tired and unable to be the wife and mom I'm used to being.
My mom leaves tomorrow. Boo!! It's been great having her here this week. She's been able to "mother" me a little (not too much since I'm feeling good) and has been a great help around the house and with the kids. Just not having to keep up with the laundry and dishes and getting the kids to bed at night... Monday will be a rude awakening for us. LOL She will be back for Thanksgiving and then again whenever I have my surgery, but we're all sad to see her go.
I think I'm going to have to call my MO's office about the magic mouthwash. These sore spots underneath my tongue on the sides are making it VERY hard to swallow. I've been rinsing with everything I can think of, but still OUCH.
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Soccermom, nice to hear from you, I haven't seen you since our July surgery thread😄I am glad to hear things are improving and you get to get started with treatment. I just had my 3rd A/C infusion Thursday, 3 down 1 to go, then on to Phase 2 of chemo. Feel free to PM me if you have any questions and the ladies here will be very helpful as well.
I hope everyone has a good nights sleep and that we all have a better day tomorrow with our SE'S.
Hug's to all Shary🍂 -
Hi lighthouse and everyone!
The steroids go hand in hand with the taxanes. It is on the manufacturers site as recommended procedure because they have a higher risk of allergic reactions than some of the others. It is made from a Yew tree or something like that. Some oncs give Benadryl in premeds for it too. Steroids usually raise your your WBC counts and your blood sugar too. Plus they cause water retention and weight gain. They did all that for me along with raising my usually low BP. I would have settled for just one or two of them!
Magic mouthwash is Benadryl, Maalox, and lidocaine. Sometimes they add an anti fungal to it if they are treating for yeast/thrush. They don't sell Maalox over the counter any more but milk of magnesia instead. I don't know how similar they are, but other ladies on the older threads used to mix the Benadryl and Maalox to make their own without the lidocaine.
Is your mouth coated with white ick? You can get a script for mycelex (sp?) or other anti yeast in liquid or lozenges. I started swishing and spitting the liquid the night of chemo and twice a day for a couple of more days and is seemed to help.
Mouth sores were frustrating. Mhope they pass soon and don't come back,
((((hugs to all )))) -
My mouth had the white "ick" after my first chemo (but no sores)... this time I don't have that but I do have the raw feeling in a couple of spots. They are way in the back under my tongue so I can't even see them. I sure can feel them! I don't have any liquid Benadryl, but I do have Maalox. Wonder if that would help if I swished with it. I'm desperate. LOL
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Can't hurt! You don't have to swallow it. Just rinse and spit!
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Something else I wanted to bring up in seeing so many people back here for a second trip and because the thought of reoccurance will be heavy with all of us, I was reading about fasting not only to help with chemo, but that it can actually prevent and even treat cancer. I am pretty positive that I will be doing that when I am done with all this. I don't know how often it is recommended or anything like that, but I would be willing to give up food for a few days periodically to not have to go through this again. I am sure there is a whole preventative thread on here somewhere though? I just wanted to share with my September sisters
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LiLi - no, I'm not in a study...there are many of us on weekly Taxol (there's even a separate thread in the Chemo board), it's more inconvenient in terms of timing but I understand the SEs are less under that regimen. My AC treatments are also every three weeks vs two, so I avoid having to take a Neulasta shot, something my MO wanted to avoid due to my pregnancy. Funny how everyone gets different guidance, eh?
Batcatlady - an intimate chemo room sounds great! I considered going to a more local private infusion center for treatment, but my husband was adamant about getting everything done at the cancer center. I even switched my OB care for the remainder of my pregnancy there so everything is in one place. I actually bought my wigs at a great shop in Campbell!
Mfm - sorry to hear about your re-diagnosis. I know chemo is not something any of us wish to do, but it's benefits can be significant, and you may not get any or all the SEs and downsides that you may have heard about. Best of luck to you in this next journey and I hope after all this you never see that bullet again! -
Hey soccermomof4, you & I both start Chemo on Tuesday! Let's touch base here afterwards!
Good luck!
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Thanks for the feedback, @mamastewart, @4sewwhat!
@mamaStewart - I'm totally intriuged by the fasting. I recently read articles about the fasting-during-chemo trial that is currently ongoing and...wow. It's interesting, no? Is this what you are talking about, BTW? (Background: there was a study on rats showing that fasting for 48-72 hrs around chemo injections was more effective at shrinking tumors...and another tiny one that showed a reduction in chemo side effects in humans. The concept is that fasting causes your "normal" cells to slow down...but cancer cells won't. So the chemo, when injected, targets only the cancer cells, not all of our happy normal cells which are "sleeping". Or something.)
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Sdrauglis: Yes! Exactly! When reading about the chemo fasting is when I read about fasting just for cancer prevention/cure. One study I read that was huge was also on mice. They fasted 24 mice before giving them basically an overdose of chemo and one died. When they overdosed 34 mice without fasting them first 20 of them died! Those is huge numbers to me. I got the go-ahead to fast so I've got 24 hours left to eat and then not again until Saturday. Not real food, anyway. Water only for 48 hours before and 24 after and then broths or other clear liquid for 24 hours. I am so excited that maybe this will help with the side effects and also treat my cancer better!
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Hi Ladies,
I was really interested in the fasting for chemo too and looked into the studies about the mice and whatever else I could find. In the end I didn't do it because I had (i chose to believe the surgeon has liberated me from it) a very slow growing type of ILC, Ki-67--7% and grade one. My path report said that the cells were barely mutated and hard to tell from the normal, healthy cells. So I decided against fasting. Chemo looks for faster dividing cells and I already knew I was up against that. Plus I was worried that if the cells were that close to normal maybe they would still have the protection mechanism that the normal cells have. I didn't want to take that chance. and my onc agreed.
I had seen where a naturopath was suggesting sugar on chemo days to speed the cells up too. It kind of made sense to me because they give you glucose for a PET scan to make cancer show up? The steroids also raise blood glucose. I used it as an excuse to get a Krispy Kreme on the say to chemo since I was avoiding sugar most of the time!
Good Luck to you all. I am going to look into the fasting for prevention as soon as I get through rads!
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I'd like to know from anyone/everyone what you can tell me of things I can do either before, during or after to lessen the most common side effects of this first round of chemo. I'm reading bits and pieces of what others are experiencing, but it's all incidental reading (because I don't want to read too much about some of the SE’s others are going thru that don't apply to me and the cocktail I'm receiving - know what I mean?).
KBeee mentioned chewing ice and gave me the reasons why - good to know and how do I know the nurses would suggest doing this? I don't! I've read about "white ick stuff" in the mouth after treatment – what’s that about and how to avoid it? I'm reading bits about thrush - what exactly is that and how to avoid? And on and on……
I’ve been to the Chemo thread and have many of the suggested items on hand already and those I still need are on my shopping list. I’ve a decent start of head caps, hats and scarves and Friday appt for wig fitting. I still need to shop for the items I found in the binder from MO on the “heavy calorie foods” that I MUST get (I’ve lost so much weight in last year it’s scary and cannot afford to lose anymore!). Although I do worry; I have high cholesterol already and am pre-diabetic and these suggestions don’t look like they are good for either of those issues (is this one of those “battle the worst problem first and worry about the others later?). I’ve no clue how chemo is going to affect me….but I have much on hand to cover anything that might arise (I hope!). So I don’t need any tips on that (they’ve done a great job at that thread informing us newbies what we should have on hand)!
Anyone who has input, I'd love to hear (you can see my chemotherapy meds at the bottom – they’re posted as Public) and have no port. I’ll be getting chemo via IV. My past experiences are that medical personnel don't always tell you a lot of things.......so I'm turning to you all to give me a clue. I'm 5 days to start of chemo and want to do whatever I can to lessen SE's and since I was told nothing by MO or chemo nurse at my first visit.....well, I have little time to get things in place and do what I can to keep some of these things from happening (and quite frankly, the binder I received only touches on some of these issues - no info on what to do to avoid them - big surprise! - see what I mean about not always being told.....?????)
As always, my greatest gratitude to all who can help. I really don’t know what I’d do without having this forum to turn to – we’re all in this together at the same time and everyone is so supportive and encouraging and helpful! It’s truly been a Godsend to me!!!!!
Hoping everyone has a healthy and happy Sunday. To all suffering side effects of treatment, you are all in my prayers! I’m about to join you, I fear, but this is the journey we’ve chosen and is what suits our needs best – nobody said it was going to be easy and dear God, may we all come out of this stronger and cancer free when all is said and done!
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Gavinsgrandma - Yes, I have been lurking around , but sometimes need a break from all the information - my mind thinks too much!! How are you feeling? Are you having alot of SE? Blessings to you!!
Vintagegal - Absolutely!! I am nervous, it will be nice to have someone to walk through it. How many times do you have the AC? I have it 4X & then 4 of the taxol. Are you doing anything to prepare? I think I will take ice chips along, per everyone's advice on here. I don't know if I will fast but I think I will eat light tomorrow & tues. I am going in the afternoon, so my chemo will start at 3:30. Check in with you soon!! Blessings!! -
LiLi - I'm on the same cocktail as you, so I can tell you what I do. Definitely chew ice during all of your actual chemo drugs (not necessary during the premeds). I didn't do that the first time and my mouth was WAY worse. The white "ick"... I'm not sure what it is, but I've had it both times. Not thrush, which is an infection, but just a gross coating. Your taste buds will probably go on strike, so you might have a hard time finding things that taste good. For me food still tastes normal for the most part, so I'm eating whatever I can stomach, but drinks are hard. Water tastes oily, so I'm staying hydrated with non-caffeine drinks like lemonade and Sprite. I'm sure they gave you a prescription for nausea meds... start taking them as soon as you get home from chemo. A lot of us on AC have the nausea kick in within hours of our infusion, and it's way easier to control it if you stay on top of it, not waiting until you get sick. If you are going to get the Neulasta shot, take Claritin that day and the next five. It will help with bone pain. Start taking a stool softener (or have Miralax handy) when you take your nausea meds. Most of them have constipation as a side effect, and like the nausea, it's easier to stay on top of it than try to play catch up. As for your other health issues, I would say be smart but for the most part, during chemo, you do whatever you can do, and that includes eating. You'll have to find what tastes good to you, and if you're feeling really sick, that list might be pretty short. I have my third AC treatment the day you go for your first, so we'll be at the AC "bar" on the same day. Good luck!
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Thanks Michelle that was a great summary!
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So grateful to feel better today, yesterday I literally felt like an 80 year old woman in heart failure! Dizzy, out of breath and my heart pounded so hard with every beat it hurt into my spine! Even laughing would get me seriously winded. Got the onco on call for the weekend who reminded me I was in nadir but should not be experiencing these extreme side effects of apparent anemia yet (that should come 2 to 4 weeks from now). Without a fever she really wanted me to avoid coming to the hospital because of such a high risk of getting sick from others..so told me to take it easy and come in Monday for bloodwork....I reminded her that even my pre chemo CBC was showing me out of normal range for red blood cells (low) ..why my own doctor never pointed that out is a mystery. She said my body is probably reacting to the drop in hemoglobin ...and in an overly dramatic way because of my good fitness level..but that because of my history of heavy periods I really need to be on an iron supplement. And just this morning it appears I'm starting my period. OMG I just hope I don't die from the blood loss.....I expected nausea which I didn't experience this first go round. I certainly didn't expect debilitating heart pain. Gees..so glad it's gone today. Maybe the Valium at bedtime helped
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