Anyone on just Taxotere and Cytoxan?
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I would agree with the flu like feeling on days 3 and 4. Those have been my worst days.
The nurse told me there might be bone and joint pain about 2 or 3 days after the Neulasta shot and it could last for about 5 days. I had a bit of hip pain after a couple of days, mainly when I laid down to sleep, but it wasn't too bad and Tylenol PM took care of it right away. I think everyone is different, but I didn't really think that was much of a problem for me. I hope you won't have much either.
Chris
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Thanks Margaret, and welcome Jen, as far as bone pain, for me it would come on about the 3rd day and last off and on till about the 7th day. I don't know if it was caused by the nuepogen shots or just part of the chemo.
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Thanks Deanna, Chris & Amann for your words of encouragement! At least I know that I should have at least 2 good weeks before I have the other treatments. I was afraid that the bone pain would be unbearable and last for weeks, so this makes me feel much better.
Deanna: I was surprised that they were going to begin the treatment before all of the wounds had healed too, but my onco doesn't want to delay the chemo any longer. When I begin it will be 10 weeks post-op and I think he was nervous about that much time going by. Thankfully I didn't have any positive nodes or I think he would have wanted to start sooner. According to my PS the wounds on my breast should be healed by then, but I have a new are that may not. I had some fat necrosis that got infected on the upper part of my chest and the PS had to lance it and I am now having that wicked everyday. The pocket is pretty deep but looks much better now so it should begin to fill in. I just hope it is quickly because the VNA nurses have said that that is the one that may give me trouble.
My onco said that he was going to do my treatments on Thursdays so that I could take Friday and have Saturday & Sunday to recover from the chemo and could then hopefully go back to work the following Monday. But if I am still feeling lousy I will stay out then too. I was a little bummed out that my first treatment was going to be on Columbus Day weekend because my daughter has a soccer tournament in NH (which is a little over 1 hour from me) and I was hoping to be able to go and stay over in a hotel with the rest of the team...we shall see how I feel.
Thanks again for your words of encouragement!! Have a great day!
Jen
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Jen... Each onc will have their own opinions, and it sounds like you have a good one even to be up on TC, which not all are. For what it's worth, I had the same concern as you re. delaying chemo, and my wonderful onc @ UCLA said 3 months after your last surgery is the maximum they like to wait. I later found the published study that showed no difference in 5-year outcome for those starting chemo 1, 2 or 3 months post-surgery. I am not trying to second guess your onc after reading a couple of communications from you, but I would be exceedingly careful, especially if you already have an infection (not just an open wound) going on... Just my two cents worth... Deanna
P.S. Just wanted to add... I started chemo at 10 weeks due to an open wound. The next weekend was a very important family wedding I was sick about missing in the East. When the delay got so close to the wedding, I asked my onc about starting a week later, which would have been week 11. Her reply was that having to wait for complete healing was one thing, but waiting to start to attend a wedding (or a soccer game in your case) was not okay. I just didn't want to imply that waiting up to 12 weeks can be justified for anything other than medical reasons.
Dx 2/1/2008, 1cm, Stage IIa, Grade 2, 1/16 nodes, ER+/PR+, HER2-0 -
Welcome, Jen. You're doing some good info-gathering here. I didn't get bone pain -- something like 40% of women get it with Neulasta (or is it 60%), so I was one of the lucky ones. Taxotere does cause some joint and muscle pain, though. It really varies with the individual. With the narcotic pain-relievers, they all cause constipation so be sure to take a stool softener.
Sounds like you have a great flexible job.
Meg, thanks for the info. The scalp tenderness will lessen -- I didn't notice it much after round 1.
Went for tx 4 yesterday (last one!), but I'm very anemic so may have to get a transfusion. I hope not -- I've spent enough time in medical settings and ready to get on with my life! And my neuropathy has gotten gradually worse over time -- the tingling started today, whereas with round 1 I only had a day or two of intermittent tingling. Do any of you graduates have this experience, and how long did it take to go away? Thanks for everyone's input. --Lani
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For the delay question, my onc said the 3-month limit was set up for the benefit of clinical trials, so that's why you only find clinical trials of people who waited up to 3 months. Due to several delays (including personal -- I had tickets to Europe and didn't want to lose out on $3000 unless the doc said I should), I started 6 months after my dx, and another woman who came up from Mexico started one year after, with our oncologist's blessing.
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Jen'
I NEVER got bone pain on T/C and Neulasta. I still don't know what it is or feels like. What I did get was what I describe as muscle ache. The front top of my legs from half way down to knees. Every time I would move them at night in my sleep or when getting out of my recliner I would notice it.
Edited to say what I did get after first treatment only was a slight backache that lasted from about day 2 through 6.
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Hi, I had TC 2 1/2 weeks ago, first one. Had Neulasta the next day. By the fifth day I was a mess and went to the ER with a temp of 101.5. Had zero counts and neutropenic fever. 4 days in isolation and a week of bedrest. Chemo ate the inside of my mouth and throat but got a good lidocaine swish from my doc. Worried about a couple fingernails. Next one this Friday and if another bad reaction, I am done.
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Lani - Congratulations! So glad you're done. It's great not to have to look forward to another treatment and can look forward to getting your life back.
iowagirl - So sorry for your horrible experience with your first chemo. I hope the next one is better for you.
Kathy
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Iowagirl, I'm so sorry you had such a rough go of it. Is your oncologist going to cut your dose for the second infusion? My counts went to zero in my first infusion and my doc cut my dose by 20 percent. They still went low after that, but nowhere near as low or for as long. For your nails, many people including my onco nurse swear by either dark nail polish or clear nail hardener, and/or keeping your hands iced during the taxotere. The manufacturer, Sanofi Aventis, makes some cold gloves you can wear - you may want to ask if your facility has them and can give you a pair to wear during your treatment. I had them and haven't had problems, but that may be good old luck. Anyway, I hope it goes better for you the second time.
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Congrats Lani! I hope you don't have to get a transfusion. After my 2nd tx my Hemoglobin was down to 9.4 so the doc said I could take procrit. I took it once, and I don't know if I had a reaction or I was just having an anxiety attack about 4 hours later, it was scary. So I prayed I didn't have to take it anymore, thank God on my last Tx my Hemo was 10.4. and WBC was 5.6. Right now I feel like my counts could be really low, I've been soo cold and fatigued. I've been really trying to eat Iron rich foods. Jen, I too waited until the last possible moment. I waited exactly 3 months, I waited because I was trying to get a second opinion, and I wasn't sure If I was going to do it. I never got the second opinion, but decided to go with it. My Onc had no problem waiting for 3 months. Iowagirl sorry to hear it's not going so well. I had a tough time during 2nd tx, and almost wanted to stop, had an infection too. but the Onc gave me another week and I got my counts up and I felt better going into the 3rd tx. As far as my nails, I never did anything to them they look fine so far, I don't know if it will change later. Maybe because my hands and feet are always cold anyway.
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Iowagirl - Your first treatment SEs sound a lot like mine. They reduced my dose by 15% and the other 3 treatments were very managable. (After the first one, they actually seemed like a piece of cake!).
Gina
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Hi Everyone,
Having a tough 2nd tx - mostly severe headaches and dizziness still on day 5. I did want to note that I eliminated the Aloxi - had an IV drip of Kytril instead which is shorter lasting. Still feel terrible but no diarrhea. Also, I haven't had Neulasta either time, no fever & blood work all OK.
Iowagirl - sure sorry about your reaction and hope it gets a whole lot better for you.
Deanna- How are you feeling after #3? Hope it's going OK.
Take care everyone , Gail
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Iowagirl, I hope your onc changes something for you this treatment.
Gail, I had a steroid taper (4 mg dex in the AM only for days 2-5, then 2 mg dex days 6-8). It seemed to help with the dizziness. Your might ask your onc about that.
Kathy, good to hear from you. I hope your energy is coming back gradually -- and the hair, too!
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Hi,
Yes, he is going to 80% of the first dose.
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Hi everyone:
I am so sorry Iowagirl about all you've been through. I thought my situation was bad but doesn't compare to yours. I had my first dose last week.... within a day, white coated tongue, severe colon spasms with irritable bowel.... took Belladonna/Phenobarb which stoppped the spasms temporarily but came down with worse case of constipation. Had to take Senokot_S to get things moving along. Platelet count half of what it was..... bleeding hemorrhoids, WBC in the toilet at 1.7....raised pimply type rash across my chest and forehead ....all within 5 days of treatment. Highest temp was only 99.2 thank God. I'm dreading to see what will happen after the second one. Hopefully they will cut down the doseage. Just hope that I don't suffer any permanent affects from this chemo... I felt so good before starting all of this.
Thank you everyone for sharing your experiences. It makes going through treatment more bearable knowing that others understand.
Katie
IDC, 1.1 cm, Stage 1, Grade 3, 0/10 nodes, ER+/PR-, HER2-
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I'm disgusted, so much for my "managing" of side effects. I was taking sennecot, today added s tool softener, landed in the hospital with constipation, terrible abdominal pains, a UTI and slight colitis. I ended up with an enema, then they gave me two antibiotics and I escaped. They gave me milk of magnesia. too I had been doing so well, even still having my two morning coffees. I'm a little mixed up with the laxatives, stool softeners, etc. When I asked tonight if I could take the sennecot and the milk of magnesia, they said yes.
Also, nothing appeals to me to eat at all. I have to force myself. Today all I had was a yogurt, an apple and a half a bagel. Does anything not taste like tin?
Peeps
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Lani--WOOOHOOOOOO!!!!! Congrats on last tx!! I had my last on Sept 11. Numbness and tingling progressively worsened with each tx. I had it in hands, feet and also my face, mostly on the right side (that was scary). With my last tx it lasted until at least day 10, and then slowly started to go away, so that today (day 13) my finger tips feel thick and I have an occasional twinge in my hands, my feet have an occasional slight burning sensation and occasional twinge, and my face tingles every now and then. I know it sounds bad, but I'm pretty encouraged at the improvement and feel it's almost over.
Fatigue has been a serious problem this time....had blood drawn yesterday and we'll see what my Hgb is...I'm sure I'm pretty anemic. It was 10.4 after tx 3, so I'm sure it's below 10 now. I'm sorry you may have to have a blood transfusion, but if you do you'll feel so much better afterward.
Jen--regarding bone pain, I had Neulasta after each tx, and I only had what I considered bone pain after the first, and that was on day 7--that day, my lower back, hips and thighs felt like they were going to burst (sounds bad but a Vicodin took care of it just fine.) I had pain after all the tx days 2-5 or 6, but I think was more from the Taxotere, cause it was more flu-like aches and pains.
Iowagirl--I'm so sorry you had such a rough time. Hopefully the next will much better.
Desertrider--Dizziness was one of my biggest complaints. Staying really hydrated helped some, and I know this sounds wierd, but taking ibuprofen seemed to help as well, so I kind of thought it must have something to do with inflamation. But, even still, I pretty much stayed dizzy and off-balance for 7-10 days.
Sherri
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Peeps, I think that I am a couple of days ahead of you. My first treatment was the 15th.
Food is starting to taste like food again, so hang in there. It will improve.
Chris
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I'm on my usual steroid high day before treatment #2. Seems like this is going to be a mainstay through treatment.
Congrats Lani and SherriM!!!!! You are done!!! At what point did you start noticing the neuropathy? I'm on to treatment #2 tomorrow and did not get this side effect with treatment #1 so I'm of no help to you on this one.
Katie and Iowagirl, I am so sorry that you had to go through so much with your treatments. Hang in there, and I will keep you in my thoughts and prayers that your next treatments go much more smoothly!
Peeps, I noticed that the metal taste started in my mouth about day 11 and lasted for about a good 3-5 days maybe and then started to gradually get better. I kind of slacked off on the fluid intake after about 10 days and noticed a big improvement in taste buds and just in the overall way I felt when I started increasing my fluid intake again. So keep drinking and eating whatever tastes good to you and doesn't cause you any stomach issues.
For anyone having mouth or throat issues, I found that doing the salt/baking soda rinse was very helpful. I had a painful swallowing side effect during my first treatment and I did this rinse almost every hour or so for a day and then went to every 3-4 hours and it helped a lot. I also used the Biotene when brushing my teeth, but it didn't help the throat issue. So I used both and will do the same for the second treatment.
Best,
Sherrie
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Thanks everyone on the info re: bone pain! That makes me feel so much better that it is managable with tylenol. I think the reason that the onco wants to start sooner rather than later is because I was diagnosed in May and with the delays from the surgery, complications, etc I don't think he wanted to wait much longer. Believe me, I would rather wait until everything is healed, but according to my PS I should be just about there by the time 10/9 rolls around. Thankfully the new area with the necrosis isn't infected anymore (of course they are still watching it and that could change by the time I go to see my PS tomorrow - I pray it's OK!).
I met with the surgeon yesterday and they will insert the porta-cath on 10/3 - one more thing to worry about but at least it will make the infusions easier as I have horrible veins.
Lani- Congratulation on your last tx!!! You must be so happy!!!
Iowagirl - I'm so sorry that you had such a terrible time with your 1st tx! I hope you are feeling better and your 2nd tx goes well.
Peeps - I'm sorry you had such a terrible time! I hope you too are feeling better.
Have a great day everyone!
Jen
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Hello everyone
I have a question regarding the hair loss. Did anyone feel a tickling or some type of stimulation on the scalp prior to hair falling out? I'm on day 15 and for the past 3 days my scalp has been feeling funny but hair has not started to fall out yet. I was just wondering. My 2 tx is approaching next Tues and I'm hoping this goes well.
Iowagirl I hope things go well for you on next tx.0 -
Robichson, I had the tingling feeling on my scalp a couple of days before it started coming out. I washed my hair on the 17th day and really noticed gobs coming out, that's when I knew it was time to cut it.
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Sherrie, How often do you get your blood drawn? I only got mine 2 days before each tx. Do you think I should get one now I am 8 days out since my last tx. If your counts are low now, do you think since its' your last they will give you any boosters?
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Robichson, I also had a pretty sore feeling in my scalp for about 3 days before my hair started coming out. It felt llike my hair was up in a ponytail too long - you know that feeling? Anyway, on day 14 it was coming out at about 5 hairs at a time, and the next day (yesterday for me) it was coming out about 20-30 hairs at a time when I ran my fingers through. I felt it was time to shave it, so I called a girlfriend with clippers and she did it yesterday afternoon. It is about 1/8" or shorter and so now when it comes out, it's not such a nuisance! My scalp still hurs when I run my hand across my stubble, but it's not nearly as bad as it was.
My second Tx is Monday, so I too am hoping for the best. Sounds like we are on a pretty identical cycle... I'll be thinking about you next week. Good luck! Meg
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Some of us found those 3M (or whatever) sticky rollers to pick up lint and cat hair work really well on the scalp when the hair is really short - it avoids having to deal with "whiskers" on your pillows.
Gina
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I am starting this in mid Oct. I am very nervous and scared. They told me that I do not need a port since it is only four treatments. I am to go in every 3 weeks for four treatments. 64 days total. Is this the usual plan?
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Ilove - you'll be doing exactly what I'm doing. I've had one treatment so far (started 9/15) First week was not great, but this week has been 'back to normal' more or less. Good luck to you!
Susan
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Hi ILMK,
I'm glad you found your way to this thread. I've been watching for you...
Have you decided to do the TC treatment? That is what I am doing, too with the same schedule of 4 treatments, three weeks apart. I had my first on Sept.8 and my next on Monday. Each of us is a little different in our reaction to the TC, but I, personally, was pleasantly surprised at the number of bad days I had (only about 3). It was very doable, with the worst part being the apprehension that you are feeling right now. Rest assured that your doctors will take really good care of you and they will adjust/tweak your meds if any of your side effects are too bad. Just tell them everything about how you are feeling! No need to suffer through anything unnecessarily.
Remember to hydrate, hydrate, hydrate, and take your stool softeners or Senekot as soon as or even before you start treatment. Good luck to you!
Meg
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Gina, that made me laugh so hard about the lint roller, but I bet it really works. Thanks!
Have a good day!
Meg0
