June 2011 A/C & T Groupies Unite!
Comments
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Dsnydawn - good for you! I'll check out your blog and follow it. I find it really helps keep everyone informed and up to date without having 100 conversations. I usually post a link to my new post on Facebook because I have quite a few family and friends who use it.
I feel pretty good this morning, was able to drink my coffee and have a piece of toast with peanut butter. Late yesterday afternoon I suffered a bit of nausea, but recovered enough to eat a little dinner. I am not yet feeling the effects of the Neulasta shot, but I did take the Claritin and I'm already on an anti-inflammatory for arthritis. So maybe that will cover it!
I did learn that Compazine will put me to sleep! I took one after the nausea bout, and then had all I could do to stay awake until about 9. We went up to bed at 10 and I took an Ativan (wanted to be sure I slept, and I was down for the count!
Speaking of cost, the nurse yesterday said that the Neulasta shot is $7,000!!!!!! Unbelievable! I'm going to be a $2 million baby by the time I finish treatment.
Michelle
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Was wondering if anyone had used that cream to numb port site before infusion? Not sure if worth the hassle to even ask for it
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dsnydawn, my onco sprays the port with a cold spray right before the infusion. It's a fast acting numbing agent. I had my 2nd treatment yesterday, & both times there was zero pain when she inserted the needle. Perhaps your onco can use something similar if you're worried about pain.
LuvRVing, like your $2 million baby comment! So true! The Nuelasta is outrageous. I'm also taking Amend for nausea. $500 for three pills! I'm getting 8 chemo treatments, so that's $40,000 in anti-nausea meds alone! Unreal. Thank goodness for insurance. My heart breaks for those going through this with no insurance coverage.
Had Taxol #2 yesterday & Neulasta today. So far so good. I did try the Claritin before the shot. Tomorrow will be the telling story as to whether or not the Claritin will keep the bone pain at bay. I sure hope so because last time was unbearable for me. I felt like I was 100 years old. I told my husband that the way I felt must be similar to how someone with lupus, MS, or rheumatoid arthritis must feel.
Wishing you all a SE free & enjoyable weekend!
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Dawn, my nurse recommended asking for and using it. I think I'll give it a try.
I thought I was feeling pretty good today. But after a morning of running around, I crashed. Back up now for some more errands.
I started PT for my surgery pain and found out lots of interesting things about myself! I'm apparently hypermobile, which I forgot about since I'm not nearly as flexible as I used to be. My shoulders, back, wrists and ankles are very flexible. So while I can move my arms in a normal range, I don't need to utilize my chest and rib muscles for shoulder movement, so those muscles have really tensed up since not moving my body so much since surgery. My PT worked hard to loosen chest muscles before my port Monday. She also told me that chemo will scar some tissues? ligaments? and that I may actually lose some or all of that hypermobility. Absolutely fascinating. My PT is wealth of info and I'm so glad I found her.
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Your diagnosis is just like mine. Did you have mastectomy or lumpectomy? I haven't started yet, just got the port in. I'll have 4 dose dense rounds of AC and then 4 dose dense rounds of Taxol. Then rad. How are you doing?
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I was totally freaked out about losing my hair. I will say that once it's gone, the anticipation is over and it's much easier on your emotions. I have a wig and really like it for certain occasions but for the most part, I am loving scarves with a cute hat.
Bobbiejo, We have a very similar dx.
I was also nervous about getting A. I had an allergic reaction to taxotere and they had to change things up. For me, I had very few SE from A but the T must stand for terrible.
This is very healing for me to connect and chat with women who are at the same place as me. Prayers to all of us!
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I took Claritin on Wednesday, Thursday and today. I have not felt any bone pain...or at least not any more than I normally feel with my arthritis. I felt well enough that we went out for a nice dinner tonight. I hope I don't regret that later!
Happy weekend!
Michelle
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Dawn, I had my stitches out for my port just 2 hours before my first treatment. I was a little concerned because it was sore. The nurse used the spray and it worked! A tiny 3 second sting and that was it. They drew my blood from there too, so I think it's a good thing to have. I had AC for the first time, along with Aloxi and Emend for nausea...no nausea yet!! Thank the good Lord I hope it stays that way. Slept alot and not much appetite, had a pot of chic soup ready for when I got home. This AM just my be toast at first and then we'll see. Also, I made myself a pot of ginger tea the last few mornings and even put the extra in my water bottle....ginger is supposed to be a natural remedy for nausea - so I thought I'd give it a shot. Good luck,
BobbyJo, when I told the nurse how shocked I was about the cost of the Emend (924.00 here in CT - l had to pay $150, which was bad enough), I asked her about the poor people who can't afford that, she said, we give them something else...I actually started to cry. She said some people are eating cereal to afford their meds - something is wrong here... have a great day.
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Cheryl - I was doing the same thing yesterday...telling my mom & husband about the cost and crying thinking about people who don't have insurance...I said to my mom...geez with the high cost of these meds you would think the companies don't want any cures so they can keep raking in all this money??!! scary thought...had a rough night so I was sort of a cry baby anyway, my port was bothering me. I had alot of pain in my shoulder & neck. I hope it goes away as it kind of creeps me out (feeling something that isn't supposed to be there)..well I'm glad your keeping your nausea at bay. I hope I'm able to. Did you drink or eat anything during your infusion? I know Michelle was drinking and eating during hers. I think mine is only supposed to be about 2hrs for A/C and more like 4hrs for the taxol. Well hoping everyone has a good weekend..
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Good Morning Sisters! I'm sitting here having my Kona coffee this morning and enjoying the fact that this first treatment has not yet knocked me on my a$$. I have not experienced any bone pain at all (thanks to the Claritin and my usual anti-inflammatory) and I had one short bout of nausea triggered by the smell of charcoal lighter fluid. We will fix that problem today and pick up a gas grill. I am not yet suffering any unusual fatigue during the day, but I find myself ready to end the night right around 9 p.m.
We're going to push the envelope this weekend and see how I hold up. Tonight we are going to a Red Sox game with my son; and tomorrow the gang is coming over for a Father's Day cookout. We'll see how I feel about 6:00 tomorrow evening...lol.
I did start to experience some heartburn, so I have nipped that in the bud - will take Prilosec for the rest of the chemo treatment. What's another med, right?
I know you were all probably told this, but I am finding it very helpful...eat frequently, don't let yourself get that "really hungry" feeling. If anyone had morning sickness, you know what I'm talking about. It feels the same to me (although I haven't been prego in 30 years) and I found that just eating frequent meals helps keep the nausea at bay.
Dsnydawn - yes I felt just fine during my infusion and I did eat and drink, plus I had a bag of saline drip. I was very well hydrated by the time the infusions were finished, and I think that makes a huge difference overall.
Taking it one day at a time,
Michelle
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Hi Dawn, Here's what I did: I had ginger tea - steeped slices of fresh ginger in a sauce pan and had that the day before and day of treatment, I put the rest in my water bottle with a slice of fresh lemon and brought that with me. The morning of treatment, I had an english muffin with a tiny bit of butter and jelly. Around noon (my treatment was at 1:30), I had a little left over roasted chicken....bland. I took some crackers with me to treatment, had a few and even had a few sips of coffee the nurse gave me. I had Aloxi drip and Emend. They also gave me an extra bag of saline just for more hydration, that couldn't hurt so maybe you could ask. When I got home, I had some chic soup and a small piece of bread and butter. I took my water up to bed with me and sipped whenever I woke up. I did have a couple crackers with peanut butter around midnight as I had that nawing feeling but I think I was just hungry!! I've had no nausea at all so far but am cautiously optimistic, had english muffin again this am with my ginger tea. I hope this helps a little...I was tired though last night, slept alot...but that's okay! Good luck, honestly, the anxiety was the worst I felt like crying all the time...Cheryl
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Michelle,
You are awesome (even though you are a Red Sox fan!!!) I love reading your posts as it helps me so much to follow your progress.
The Claritin is a great tip as I have read it many, many times so it must work. I will remember that when I need it.
Have a wonderful night at the ballpark!!!
Thanks for all the encouragement...Cheryl
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Cheryl - hehehe! I lived near Kauffman and Arrowhead stadiums in Kansas City, and supported those teams for 17 years. But I am a native NH gal and it's nice to support teams that have at least a chance of winning a playoff game!!! So, who are "your" teams?
Michelle
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Do you take the Claritin b4 shot or after? And it's just over the counter claritin right? sorry just want to get my ducks in order
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Dsnydawn - I took Claritin the night before, the day of the shot, and the day after the shot. And yes, I bought CVS's over the counter generic equivalent to Claritin. I don't plan to take one tonight, so I'll find out if the 3 days is adequate.
Michelle
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I realize I'm a little slow on the tech knowledge, but how do I get my dx at the bottom of my posts?
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Took me forever to figure it out too haha go to your home ,than click edit profile and go all the way to the bottom to box signature that should work
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Well, Day #3 of round #2 of Taxol is going ok so far. I'm finding that I'm WAY more tired this time than the first treatment. I did take the Claritin before my Neulasta shot yesterday & again this a.m. The bone pain so far is MUCH LESS than the first time when I didn't take Claritin. I would describe it more as a slight muscle fatigue feeling than bone pain. Far easier to deal with this time. I did get up at 6:00 & go for my walk. I believe that any day I can get the energy to walk will only help in the long run. I'm finding that I'm much more myself first thing in the mornings, & as the days wear on, that's when the fatigue & soreness seem to settle in for me.
As for eating, I agree with Michelle. I eat small meals throughout the day. I'm having trouble with constipation, so I try to make everything I eat high in fiber. Last night I ate some white bean chicken chili. For lunch I ate a bean burrito. I am forcing myself to drink a glass of prune juice every day. So far I can still stomach the taste of it, but we'll see when I get to the A/C. It seems like I'm perhaps the only one on this thread who is getting the Taxol first, so I'll be looking to you ladies for tips when I get to my A/C! I can tell you that Taxol hasn't been that bad so far. Taxol itself can cause bone pain, then you add the Neulasta shot on top of that, & I was one hurtin' unit last time. But like I said, I think this Claritin thing is working! I am experiencing a slight bit of heartburn today, but no real nausea. Just limited appetite & certain smells do bother me, much like being pregnant.
I wish you all a great SE free weekend!
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Thanks for the direction, I'm a little slow on occasion!
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Bobbie Jo - I find that the individually wrapped SunSweet prunes work better for me than the prune juice. They are soft, sweet & do not taste bad at all. You may have to eat 3-4 but for my money it beats prune juice!!
Good luck
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Hi, everyone. I'm Liz. I start mine on 6/29 and am scared to DEATH. Been crying a lot. I keep saying that I honestly don't know how I'm going to get through this. I'm so sad and scared. I have two kids (7 and 10) and I need to be able to take care of them. I do have help, but I still need to be functional! Scared of the side effects. I already had my head shaved, so I'm not concerned about the hair loss, except that I don't want to lose my eyelashes and eyebrows. Do they automatically come out, too??
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I didn't loose any eyebrows or lashes until the taxol..and I lost a lot but kept a few..enough to see where to draw my brows....Also I forgot to mention, I had horrible constipation with the AC and the only thing that helped me was senna tablets, recommended by the Oncology Pharmacists..Also toward the end of taxol I started getting Hair fuzz growth, even though I lost the other facial hair
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Hi, Liz! So glad you found us. You will find tons of support on this thread. We are all in this together!
Let me start by telling you that there isn't one of us here who wasn't scared before our first chemo infusion. It's only human, & honestly the only thing that will completely relieve that fear is making it through your first infusion (which you will). I also understand your concern for taking care of your kids. We have a 4 year old son. We are very blessed to have tons of help, but I do understand what you mean about needing to be functional.
I noticed that our diagnosis is nearly identical. Were you given a choice about chemo? May I ask your age? I'm 39 & have a HUGE family history of breast cancer. My mom died when she was 36 (I was 5), both my grandmothers died of the disease, my dad's aunt died of it, & just 3 weeks ago, my sister was diagnosed. All those factors, combined with my age & my son made me decide to do chemo. It's not going to be easy, but I have to do what I have to do to be around to see him grow up.
Please visit us often. We are here to support & pray for you!
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HI, bobbiejo! I wasn't given a choice about chemo (well, I guess I could refuse it, if I wanted to, but they said it was necessary) because of the HER2 +. I wish I didn't have to do it but I am. I just wish I wasn't so scared and that it didn't have to last a whole year. I don't know how I'm going to get through it. I also don't know iof I have to do the 4 months of chemo and THEN do a whole year of Herceptin, or if the chemo plus Herceptin just totals a year. I guess I need to ask them that. Or, does anyone here know??
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Gee, Liz! I think I have chemo brain already! I read your diagnosis wrong! I'm ER+/PR+, Her2-. We have opposite diagnoses, not the same! I don't know for sure, but I'm guessing that your chemo & Herceptin together totals a year. Perhaps someone who has the same experience can chime in here???
I know a year is an awful long time, Liz, but YOU CAN DO IT! Stick with us & we'll get you through!
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Good Morning ladies! It is about 5 days after my first treatment and I continue to be surprised that I feel pretty much OK. I am starting to notice a little metallic taste, so I'll switch to the plastic cutlery. And my beloved morning coffee tastes pretty bad, so I'm currently heating water to make some iced tea. That may be my way to get caffeine. I don't need a caffeine- withdrawal headache, so I am brewing some iced tea. I'm thinking cold liquids are the way to go. Yesterday I went to the Red Sox game with my son and I was fine. I did have some shortness of breath and the gang had to slow down a bit for me. And I did not have any bone pain, so I'm going to give credit to the Claritin.
Our kids and grandkids are coming over this afternoon to celebrate Father's Day. It's going to be a beautiful day and I'll have plenty of help.
I think I've made it through the worst of Round One and the score is MIchelle - 1, Chemo - 0!
Michelle
Liz - there are lots of us who don't have any significant side effects. Try to focus on that thought, if you can. Your kids are old enough to help you out, and I'm sure they will do exactly that. I can only imagine how difficult this is for you, but we'll all be here to help you through it.
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Michelle,
I'm having trouble with the coffee, too. Which is a huge bummer! But I haven't had too much with the metallic taste yet. Just noticing that certain foods just don't taste good. Although I may find that I do get the metallic taste once I start A/C. Time will tell. But, like you said, the SEs are different for everyone, & I seem to be hanging in there pretty well! Claritin is working for me, too. The first Neulasta shot when I didn't take it was not good at all. I couldn't walk upright...felt & looked like I was 100! This time I have some very, very minor muscle fatigue, but it is absolutely manageable & livable.
Glad to hear that you were able to enjoy the ball game last night! I hope you have an equally enjoyable today with your wonderful family!
Keep up the winning attitude & the winning score!
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Hi Michelle,
Glad you had a good time at the game...for the record, I am a New York fan, Yankees then Mets, Jets then Giants, definitely Rangers (I like hockey).
I started chemo on Friday and was feeling great, I had Alxoi infusion and Emend but I did need to take a compazine this morning, I also took 1/2 xanax as I thought I was getting anxious,making the nausea worse. I slept some more and am feeling better now. I hope I get thru the next few days and then I think the worst should be over til treatment #2. Am drinking ginger tea with lemon also...
BobbieJo, sounds like you are hanging in there equally as well, good for you.
Have a wonderful day ladies and let's keep this positive energy flowing.
Cheryl
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Can't sleep, ladies! Having a terrible time with the steroids this infusion cycle. Benadryl helped me to sleep last cycle, but doesn't seem to be effective this time around. Anyone using anything for sleep that seems to be working for you??? Thanks!
Sorry to complain - I'm trying to remain positive & upbeat!
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Bobbie Jo - sorry you are having problems sleeping. That is one steroid side effect that I don't have to deal with because I am not getting steroids the day before or the day after infusion. You should definitely talk to your onc about it...perhaps the steroid dose could be reduced. I did fine with just 6 mg as a pre-med an hour before getting AC.
Do you have a prescription for Ativan? That seems to be what everyone gets, and it will help you to sleep. I was already using Restoril (temazepam) 7.5 mg, and it works nicely for me for about 5 hours. Then I doze off and on until sunrise (which is 5:15 or so). I wish I could sleep in a bit more, but at least I am getting six-seven hours each night. I've had trouble sleeping solidly since menopause, so this is, more or less, my normal night.
And don't apologize for complaining...this is the one place we can come and be totally honest. I don't think anyone should feel the need to "hold back" on what's really going on. If you're experiencing something, you can be almost certain that someone else either has been there or is there right now and can offer ideas or moral support.
Hugs,
Michelle
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