Who is starting chemo in September 2016?
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As of tomorrow I'm joining the club of being done with AC!!! Thank goodness!!! 12 Taxol treatments following. Done on January 20. Then 6 weeks of radiation. Sometimes I feel like I will be 100 till this is all done! They are changing the length of time of infusion because the last two times I have had horrific headaches that last for days from the premeds--specifically the Aloxi. This was confirmed by the MO today. I had an interesting conversation with the MO during my visit today about hair. I still have about a fourth of mine left. At my appointment 2 months ago she assured me it would start growing back once Taxol started. Today she assured me that what I have will fall out and any new hair I might grow will also fall out. I don't know what to believe because nurses and lots of people on these boards have said that their hair did start growing during Taxol. Has anyone gotten any feedback on this?
Dennyj--good luck with your passport. Mine is due to expire in Feb. I was wondering about wearing a hat, scarf or wig so I actually went and had a new picture taken the day before I started chemo. I won't put the application in until after the first of the year. I wonder how current a picture has to be. There is no date on the photo so hopefully they will accept it. As far as itchy wigs, here is my experience. I have two different wigs. One is the real hair one I got free from ACS. The other is a synthetic wig I paid a lot of money for. I much prefer the real hair wig. It is not near as hot nor is it itchy. It is thicker and heavier hair than the other one, but it must breathe better because it has not been hot at all. The synthetic one feels like, well, fake hair. It is kind of stiff and hair feels rough. Little strands of hair poke through the wig cap and make me really itchy and it is HOT!!! I wear the real hair one daily for work and usually only wear the other one when I wash the real hair wig. That's another thing--real hair wigs can be washed and styled just as you would your own hair using hot rollers, curling irons, hair spray, etc. Not the synthetic. It has very specific care instructions which only includes very low heat for styling and special shampoo for washing it.
Congratulations to everyone who has finished AC or will be soon! What a relief!
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Hi all. Sorry I have been absent lately. My laptop died so I am on my phone. My c diff is getting better and my third AC is scheduled for my original last infusion. Nov 1st. I have had 3 of 4 hydration infusions....the last one is tomorrow morning. I have been following everyone. Sam...my thumbnails are turning black too. More later love and blessings.
XoxoMichelle
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seq24 - so after all my research today, I can answer your question about your picture. They said a picture could be up to 6 months old so you should be all set. Honestly, I never thought I would need it but I was inspired today to go away before my surgery.
thanks for the wig tutorial! I might try it out!
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I had my 2nd THCP treatment today. It went well until I got the Taxotere I had a weird reaction since they ran it faster this round. I got a weird pain in my stomach then it moved up and I couldn't breath very well it was like a weight on my chest then I turned sooo red and hot it was sooo scary. They turned it off and it all stopped. I then got a bag of benedryl and they tried again and it started again. So now they slowed to a 2 hr drip and it was fine. I'll be a nervous wreck next round.
But overall the good news of my day is the tumor has already shrunk to half it's size after only 1 treatment. My dr was shocked and so was I. It felt smaller to me to but I thought it was just more wishful thinking because I want it gone. I'll be glad when this is all over.
Congrats to everyone finishing up their treatments!!! And for everyone else hang in there we will be there soon!!!
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Dennyj--thanks for the passport info. Good for you for for getting away! Hope you're going someplace exciting!
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seq24 - Not sure yet where we are going but a little warm weather will keep me motivated!
LynnC1968 - wow, that was a scary experience. I am glad that it all worked out. Great news on your tumor!
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I've been off the forum for a few days due to a busy work week. It's good to get back and read your posts.
Ladies, I have a friend who's having pain in her scalp since losing her hair. Someone mentioned a remedy for this, but I can't seem to find it. Does anyone remember that remedy?
Lynn, I know that scary feeling because it happened to me at my last treatment. See my post from October 6. I thought I was dying at chemo.
I wanted to tell about a very nice experience. Last Friday was our "Pink Out Pep Rally" at work. Our cheerleaders hung a huge sign in the gym that said they loved me. Then we had a breast cancer survivor march, and the cheerleaders presented me with a dozen pink roses. I am very blessed. I was all hyped up about the Race for the Cure scheduled for Saturday morning, but my back started hurting after climbing the bleachers at the pep rally. It turned into a very uncomfortable weekend. My back was killing me -- middle and lower. It hurt to sit and hurt to walk. I called my MO. He said that is a common side effect with Neulasta patients and told me to take 600 mg Motrin. I still wonder if the pain is from pulling a muscle the day of chemo. I was carrying my chemo bag and took a step and felt a pain go from my backside down my leg. I was in pain from that during chemo, too. Sometimes I feel that the MO's don't ask enough questions.
I'm also still having what feels like menstrual cramps but haven't had a period since July. Third chemo treatment is next Thursday. Yay! Halfway finished.
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Hi Ladies-so sorry I have been MIA for a bit. I started back to work this week and have been adjusting to the change. I have caught up on all of your posts and so happy that many have you have completed your AC treatments. I had my third round yesterday. ONE more to go!!! SE's are different so far than any other round. Mostly just fatigue, not normal fatigue, but where it felt like I had concrete boots and gloves on my limbs were so heavy. I was able to talk my MO into a take home steroid to get me through the skin reactions I have from Taxotere. My nuelasta should be injecting in a few hours and I'm hoping and praying the bone pain is minimal.
I, too, have had weird periods and talked to my MO about it. She said that honestly, she couldn't give me a straight answer because it's different for everyone. The longer the treatment the less likely you are to have your period. This past time I cramped and spotted for a week and then randomly bled very heavy for 24 hours and then nothing. It kind of freaked me out a bit.
I have noticed some unusual swelling or retaining of fluid. To the point I've gained 10 pounds I addressed that with her too, and she said that's the Taxotere as well. She said that is the number one complaint she receives so just sharing in case any of you suddenly start swelling and gaining. She said it should resolve within a month of finalizing treatment. Until then I just look/feel like the Staypuft Marshmallow man from Ghostbusters. No need for a Halloween costume
Hope you all have a wonderful weekend!
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It's funny you should mention swelling. I haven't experienced it yet but my NP warned me that it might be coming (I had my third treatment on Wednesday). I guess for those of us on 4 cycles of TC, it's a common side effect that might happen on the third infusion but usually after the fourth.
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Lynn, that is scary. I had an allergic reaction to Taxotere on my first treatment. Very similar to yours. They gave me the benedryl and started back up. Since then, I automatically get the benedryl first and I have not had any reaction since. Good luck on the next treatment!
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Whoa, you guys weren't getting steroids and Benedryl right from the start? Taxotere, being plant based, is known to cause allergic reactions. Maybe I was automatically given the pre-meds because of my history of plant allergies and asthma?
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We spoke to Emily's MO today and he said they increased her carboplatin dosage for this last round because her kidney function lab numbers were a little better than the first two infusions. Some time ago, I remember someone saying that many women do not tolerate all 6 TCHP treatments and end up stopping short of that number. I asked him about that. He said only 1 of his patients didn't finish all 6, and that one was partly due to a pre-existing health condition. He went on to say Emily is a "Superstar" among the people he has treated in terms of how well she has tolerated the chemo. Yay! for that.
A big hooray for those of you completing your first regimen! Everybody stay strong and have a great weekend!
If you're looking for us, we'll be in the garden...
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what kind of swelling are you getting? I've noticed some swelling and tenderness around my scar area and under my arms, usually in the 2nd week.
I haven't been getting Benadryl but have steroids each round. ( history of allergies and asthma but seems to be standard protocol of the hospitals in my area). I haven't gained weight although I'm having such strong SEs that I lose weight during the 1st week then gain it all back in week 2. I had a short hospital stay this round for fluids and almost zero WBC ( despite Neupogen injections) and the MO checked my ankles for fluid retention ( which I though seemed weird given I was so dehydrated but makes sense with the posts above)
Anyone having weird food cravings? I ate at McDonalds yesterday after a massive craving, and intensely wanted jello today. Feels like I'm pregnant all over again.
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Hi all!
I had my third infusion today! Yay! Halfway done! I tend to have swelling and take a water pill - well this week, I mentioned to my husband that I was still taking it the day of and the days after chemo and I wonder if that contributed to my being so ill? I am not taking it and have not been since I got sick a couple of weeks ago so I too am the Staypuff Marshmallow man and cannot even wear my wedding band. I do not want to be that sick again so I will not take it until I see how things go.
Everything went well today and my port worked like a charm! I had an allergic reaction to the Perjeta on 9/30 and so now I get Benadryl and a bit of a steroid to begin with each treatment. Even though they were not crazy busy and we had none of the excitement of last time, it still takes forever! Oh well, only three more to go! We didn't have time to go to the wig place after we were done (again) so I still do not have one. Wearing scarves and beanies still all the time. My scruffy hair is still hanging in there and doesn't seem to be falling out as much. I cannot shower yet because of the new port so I guess I will see when I can do that if more comes out.
Hoping that we all have a good weekend and have little to no se this round.
xoxo
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Never thought I'd be able to say this but AC IS DONE!!!!!! Thank goodness!!! They changed the infusion time to avoid the horrific headache I got last time and so far I feel great. Hope it lasts. But, as is my luck, there is always a problem. No sooner did I get home and I checked the Neulasta pod to make sure it was still blinking. I noticed that the adhesive that holds it on was off on the whole top half of it and the little needle thing was mostly out. Great! I called them and they said to come back immediately. So back we went. After a bunch of people looked at it they determined it was faulty adhesive (really?!) and had to replace it. Usually those things are stuck on there so hard that I feel like I'm peeling my skin off trying to remove it. This was just another time in this process that they said "oh, this has never happened to anyone before". Figures. I better not get a bill for $18,000 now because the insurance won't cover the replacement. They said I wouldn't, but once again, that would be just my luck. But it's done and hopefully Taxol will be as easy as they said it would be. They gave me the calendar for all of the Taxol treatments. At least on paper the end is in sight. I'm not feeling it yet, but the paper says so. Onward!
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Oh my gosh, I've been getting food cravings like crazy too. Totally feel like I'm pregnant. I had a craving for mac 'n cheese from the kids menu at a restaurant we used to go to years ago. I found the recipe online, my husband bought me the ingredients, I made it and couldn't taste it at all so have no idea if it tasted like the real thing. My blood sugar is all wonky, with these crazy cravings. Yesterday, I all of a sudden had to have a cheeseburger from Fuddruckers (which I usually don't care for), but I'm too sick to leave the house. Luckily my husband is sweet and went and bought me one. I could actually sort of taste it so that was good--ate the whole thing which is usually impossible. I don't have diabetes but my glucose has been high with my labs. I read you can get chemo or steroid induced diabetes, hope that's not what is happening. I took hardly any steroids with this last infusion which was a week ago. I wonder if any of the other meds mess with your blood sugar.
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I'm getting ready for round 4 starting next Thursday. I haven't noticed any swelling, definitely no weight gain as I'm down 12-15 pounds overall. The first cycle i lost weight and gained it back, the second cycle I dropped around 8 pounds. Similar for the third one but I've gained a little bit back this week.
Emily sounds like she is doing amazing, she's my hero with the TCHP.
I was able to go into work this week for all five days, though more 5-7 hrs a day vs. fulltime. Hoping they can give me some different concoction for round 4 to mitigate the nausea which really wiped out a week of work for both round 2 and 3 that i hadn't counted on. Blech. Even today although I made it to work, I wound up having to pull into the parking lot of a hotel nearby as I was driving home. I'll probably be banned there forever as i couldn't help getting sick in their back parking lot lol (better there than in my new car!).
I still have some hair at this point, not very thick but it's grown some since I buzzed it shortly before round 2. Not sure how long that can be expected to stick. I keep fearing I'm losing my lashes but so far they are hanging in there.
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Hand to God i thought I was the only one with the weird cravings. I told my husband feel like I'm pregnant again..and just like when I was pregnant when I want i want right then and there.
My MO set me up on fluids twice a week right after my infusion that seems to have worked. I went in yesterday for my fluids and my heart rate was up. Nurse said it's because I needed fluids and also needed to eat. Boo...so I forced myself to eat and drink and I do feel a little better. I know what I need to do, just as you all know when you have that weird metallic taste in your mouth nothing taste good. Anywho.. done with my complaints..
Everyone enjoy the weekend SE free!
Hahlyn
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Beebs-I first noticed it in my hands and ankles. I had to remove my wedding band as it was cutting off my circulation. I had lost weight, too initially, but after 2 weeks of steroids to prevent SE's I gained back what I lost. Then added an extra 10 pounds
My surgical sight does swell as well, but I was told it will do that off and on for a year. Pushing fluids seems to help a bit. Bagsharon-my swelling started after my second treatment. I always have to do things the hard way
I always get benadryl, zantac, a steroid, and emend (which burns like hades) prior to my chemo drugs.
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congrats to all of you finishing up AC this week!!!! Good luck with the taxol and rads!
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I completed my 4th and final AC treatment about 1.5 weeks ago so will be starting my first of four dose dense Taxol treatments in a few days. Felt a bit worse (but not too bad) after AC#4 and took an extra day to start feeling better. My red blood cell count was low prior to treatment but in the "we'll keep an eye on it" category. I was warned that it could also make me feel tired. Still working full time and hoping Taxol doesn't lay me low.
I'd be interested in hearing what any of your MOs are saying about why they use 12-weekly-Taxol versus 4-dose-dense-Taxol treatments or vice versa.
Seq24 - I was told that my office had received a batch of Neulasta packs with faulty adhesive! They were using addition adhesive to be sure they stayed glued on. In addition, they have always covered mine with an additional clear bandage. The drug company is supposed to eat the cost of any packs that fail so keep an eye on your bills and EOBs to be sure you aren't double charged.
LisbethS - I have pre-existing diabetes and it is generally the steroids that can cause blood glucose elevations during chemo treatment. I control my blood glucose levels by eating low carb (no sugar, no grains/bread/pasta, no potatoes, etc.) I've read that people without diabetes usually regain their normal blood glucose levels once past treatment but in rare cases, are diagnosed with ongoing diabetes.
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I asked about the DD taxol, also. My MO said it is the preferred choice when a patient does not have other conditions and is healthy enough to handle it. I think it is like the neo-adjuvant chemo. The more sophisticated hospital/doctors are up with the new ways of doing things. It is certainly worth not going in every week, but it's tough on me. I have 2 more to go. I may be on the outer edge for age though...67
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Leydi--Very interesting about the faulty adhesive on the Neulasta packs. Do you mind if I share this info at my next treatment? That was definitely the case yesterday. The bad one came right off when the nurse asked me to take it off. I told her that it usually takes awhile to get it off because it's like it's on there with super glue. When I took the one off today after it injected, I thought my skin was coming with it. Yikes! But at least that's the last one! I did ask if my insurance would be billed for both and they said exactly what you did. That the drug company would cover the cost of the faulty one. Good thing because mine are $18,000 each!!
Funny that you mention DD Taxol. I was just sure that when I saw my MO on Thursday and when she found out that the ONLY side effect I had from AC was being tired (headaches were pre med interactions so I guess that doesn't count) I just knew she was going to recommend DD Taxol instead of 12 weekly treatments. She didn't say a word though. I do remember reading somewhere that the higher dose of Taxol has similar side effects to AC and that's why doctors often recommend 12 lower dose treatments. DD is given every 3 weeks over 12 weeks, correct? I guess it really doesn't save any time on the length of treatment, just the number of infusions. I start Taxol on Nov 4. I know it's going to be a pain going in every week but maybe it's a good trade off for less side effects, if that is true. I've gotten so many varying stories on side effects of Taxol, I don't even know what to believe anymore.
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Mine is every 2 weeks, like A/C was. The side effects are less on 12 week. You are getting 3 weekly doses at once with DD
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My DD Taxol is also going to be every other week, so it does shorten chemo by a month over 12 weekly doses.
I woke up yesterday with an interesting and unpleasant (of course) side effect- my fingers and the soles of my feet feel as if they are sunburnt. Dr. Google tells me I have Hand-Foot Syndrome. It is pretty uncomfortable but not agonizingly painful (yet). I was under the impression that it was a Taxol SE, but apparently it's another bonus from the AC. Has anyone else experienced this? Wondering if it's worth calling the doctor on a Sunday when there isn't really much to do about it
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seg24. Good luck on your Taxol treatments.
To you and others, my initial treatment was the 12 weeks of Taxol and Herceptin. No other chemo drugs. After reading some of these posts, I see that this course of treatment is much easier on the patient. I am glad it appears to be the proper protocol for me. I will continue with the Herceptin every three weeks for a year and start radiation on late December or early January.
I am reading about the hair growth on Taxol , and don't understand. I have completed eight weeks of the Taxol/Herceptin and by week three I started losing hair and lost about 95-98% of my hair by week six. I look like that guy in the Lord of the Rings movies:)
I hope all of you going to the 12 week Taxol treatment do find an easier ride regarding side effects. Through seven weeks of weekly Taxol my main issue was fatigue two days after treatment. I have IV Benadryl, steroids, and antinausea and they seem to help. I do get jittery from the steroids the night of the infusion but that usually settles down a day or two later. This past week or two I seem to have developed an issue with neuropathy, mostly in my hands, not feet. I developed a terrible rash from the Taxol that appears to be attacking any place on my skin that had previous son damage. Lastly, I had a bad case of folliculitis. The folliculitis was worse than a rash on my arms and legs as the rash did not itch, but my itchy head drove me crazy. Had oral antibiotics for the folliculitis, and I'm now on some topical antibiotic. Dermatologist checked me last week and it's not overly concerned at this point.
With only four more infusions of Taxol to go, I am keeping my fingers crossed regarding other side effects.
Back to my original question, I don't understand how I keep reading that your hair grows back with Taxol when Taxol caused me lose 95% of my hair? Still have eyebrows and eyelashes, although they are significantly thinning.
Best wishes to all of you for easy treatments and few side effects.
M
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I did not feel so good yesterday. Headache. Yucky belly. The mere thought of chemo makes my belly queasy. This can't be good. 4 more rounds. Gotta get through it. I did not take any compazine at all, however. That could be it, but I don't like the compazine. Pick my poison I guess.
Hope everyone had a good weekend. I'm thinking uncle fester for Halloween.
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ware - I feel your pain. I have 4 rounds to go to. This is my "good week" coming up and then I am on to round 3 next week. Hang in there....I hope you feel better soon.
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I apologize that I have not been on for a while. Sounds like everyone is moving through treatment. Congrats to those that are done or almost done with their treatments. I just finished round two and start round three on November 4th.
So far, I am extremely tired which lasts until two days before my next round, nauseated, black toenails, metallic taste with aversion to salty foods, dizziness, tingling in hand and feet, headaches, hard time urinating, muscle pain, joint pain, hair is gone (eyebrow and lashes are thinning), irregular cycles (I start and stop my period every week), left ovary pain, constipation, stomach pain, decreased vision, night sweats, coughing, sore mouth and throat, dry itchy skin and emotional.
My MO has said that all my symptoms are normal so far.
A few things that have helped me (most of you are probably doing these but I thought I would share):
Putting lemon in my water to reduce the metallic taste and using plastic silverware and paper plates.
Fruit has helped with taste too (cantaloupe, honeydew and pineapple), grape juice or berry shakes with protein powder. Banana and peanut butter shake is really good too.
Popsicles help with sore throats
I found some bamboo hats by headcovers.com (found on Amazon too)that are my absolute favorite and bamboo sheets (1800 series) on opensky.
Cerave cream for dry skin
Back buddy on Amazon
Hope this is a little helpful. Good luck everyone!
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Wow jaigern. Sounds like it's hitting you hard. Hang in there girlie. Thank you for the tips
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