Taxotere, Carboplatin and Herceptin
Comments
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Bold: Talk to your doc before you take the milk thistle. That is a wonderful detox for the liver but they generally do not want you to take it until after all your chemo treatments. I started it after tx's in the hopes that a cleaner liver meant faster hair growth!
Karen: I am sorry to have to welcome you to the group, but you have come to the right place.
I had my first herceptin only yesterday and that went well - except. My hgB is dumpster diving again and this time it took my platelets along for the adventure. The onc wants me in every monday for a month for labs and NO weight or resistance training until the platelets come back up. That just stinks. I can do all the cardio my low hgB can take, but that is all.
Lisa
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Hi Lisa! Yes I still read this site and watch what is going on with everyone. Ya'll are doing great in helping the new ones. Did you have to have blood? Every time I got blood my platelets would fall. I had blood Feb 27 and I feel better now but I have not had blood work to check anything else. My chemo onc wants to do some more blood tests later to see about my arthritis. He believes that is why I had to have so much blood and it could be.
Has anyone tried the Monostat and how do you use it? At night or so many times a day? I am tempted since my hair is not growing fast enough for me. It has gotten thicker but not a lot longer.My hair used to grow like a weed and now it doesn't but maybe I am just impatient! I think rads will keep it from growing too. I have 2 to go. today and tomorrow and I will have Herceptin tomorrow after my last rad. Yes!!!
Hang in there everyone.To all the new ones this is a great site to learn on, we are all different but so much the same too. Come here for advice or to rant and be sure to call the chemo nurses for other things. Water water water. That can not be stressed enough. It can be flavored just watch the caffeine. It goes for rads too!
Carolyn ( finished chemo Nov 2008 will finish rads March 2009)
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LISA How did your test results come back for the Tamox? Are you a good candidate? Have a good day everyone...Traci
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Bold- "Many of us are on Nulasta and I have to say that my white blood count and most important Neutrophis, Lymphcytes,Monocytes,Eos., and baso's are good as they do a lot of the dirty work to keep your immune system cranking. What I am trying to say if they are with in range you are in pretty good shape and do not have to live in fear of every little germ."
I am really hoping you, or one of the others in the know here can help me out? When I went for chemo on Fri. my WBC was low. I really have not been one to question my counts (I go weekly) and assume no news is good news. The nurse told me about my WBC but then said that my Onco. uses one of the subsets- I believe neutrophis # as the threshold for withholding chemo and that # was within range. Now, this Fri. is my "off" week, however I do have do go in for a quick CBC to see where that # is to make sure I am not going to be held up when I resume on the 13th. I am on Abraxane which does not require the reg. steroid shot to keep counts up but I assume that's what they will do if #'s are not good this week.
With that in mind, I am scheduled to go for my second fill today. I had a nasty post op infection on both sides but the expanders were saved after 2 weeks IV Vanco. Had scar revision in Dec. and PS was going to wait till after chemo to avoid further complications. Saw him 2 weeks ago and healing is great, Onco was Ok with fills so he said we will go real slowl Only put 30cc's in 2 weeks ago (I was emptied from whatever was put in at surgery during infec). WHEW- sorry so long! But the background is necessary for this simple question...given these circumstances, would you forgo fills right now? I'm just getting impatient (had surg. Nov 10) and maybe I just need a good talking to to avoid acting emotionally instead of logically. Or, maybe this isn't an issue for fills. I KNOW, I know...I'll have to discuss with PS..I'd rather not though!
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REKoz: I had BM with TE Nov. 24 and began chemo Dec. 18. I did not have any post-op problems, but PS still decided to wait until after chemo and counts are normal to do fills. I did not argue the point since I don't want to do anything to raise risk of an infection. I would much rather wait a little longer for the exchange. Plus I don't really care to deal with any more discomfort than necessary during chemo. Having said all that, I know a lot of people have fills during chemo and seem to do fine. You'll just need to make a decision that is comfortable for you. Good luck!0
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Rezok: I would think that your onc. has a plan to get your blood count up. Is there a reason why they have not put you on nurlasta. I have noticed for myself as well as the our bosoom buddies here that those on Nurlasta so not have a problem with WBC. for sure. Also in reference to the Steroids. It is my belief that They stop the capillaries from leaking. This is important as without it it might fill the lung and around the heart.It is true that steroids can elevate counts but that is not is main function.
I only had a lumpectomy so I can be no help with exchanges. It seems you went through a pretty rough time. I had a 3.3cm tumor and was able to have it out with clear margins. No nodes. And the most wonderful part is that You can not even tell I had the surgery at all. I am very lucky to have had such a skilled surgeons. She really told me that there was no reason for a mast. I hope she was right about that. My prayers and thoughts are with you. Chemo is a challenge I can not wait till its over. Today I go in for my hydration and nulasta shot. I will take my Clartitin D this morning and for 4 days. Along with stool softeners etc...... OH BOY!
4 down two to go!!!!!!!
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Bold- It is I who is confused. So it is nuelasta that keeps your counts in range and NOT steroids? Then I suppose it will be nuelasta that I will get if my counts remain low. Abraxane is a water soluable taxotere so it does not require steroids to aid in absorption. Since I am weekly x 3 instead of every three, my numbers have remained within range until now. Again, since he does not go by the entire WBC, I have still been ok but now there is potential to need something to bring it up.
You ARE indeed fortunate as this expander process is indeed a challange. Particularly after almost losing them. I think I was just asking you about those WBC subset #'s and if you knew what each indicated. Looking for any reason to not have to postpone fills today which is indeed stupid after all I've been through! As I said to another sister: I think I am just going through yet another "here I grow again" episode so prominent in this journey!!
Ellen
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REKoz- The Neulasta shot is used to boost the WBC by stimulating the bone to produce more of them. I was given the Neulasta shot after every chemo except my last one and I never had a problem with WBC. When it came time for my final chemo, the doctor let me forego the shot, since there wasn't any rush to get those cell counts within a normal range. I know the oncologist group that you are using and when I consulted with them, they told me that they only give the neulasta shot if the cell counts fall below a certain number. They told me that they never give it automatically. The steroids are given to help with the side effects of the chemo...at least this is what the chemo nurses told me. One example they used was that the steroids would prevent fluid in the lungs.
As far as the fills go, I am almost done with my fills and I was only allowed to get them just before a chemo treatment (usually a day or two ahead). The reason for this is because my cell counts are their best at that time and the chance of an infection is at its lowest. The exchange surgery is a different story. I went for a fill earlier today and the plastic surgeon told me that I will not have the surgery until all of my counts have returned to normal and my body is healing from all of the chemo. His guess is that it will be in about 4 weeks.
Bold - My liver enzymes were elevated before my last chemo and the nurses told me that it is VERY common and not to stress about it too much. They assured me that they will go back to normal after my body is done with chemo.
Hang in there ladies. You are all one day closer to putting this behind you. Stay strong.
Anne
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Bold I am right behind you I have my 4 Tx on the 16th , We have very similar history I had lumpectomey 1.5 cm Clear margins and No nodes I also have a great surgeon with great results, I have a worse scar from node removal it is in my armpit so it isn't very noticeable it just I don't know why it didn't heal well there, Did you have that problem? My biopsy and lumpectomy site looks great it was a 3" incision that healed good. 0 -
REKoz: I also am not getting nuelasta (I have had 2 treatments, so don't know what is ahead.) My blood counts have been checked only on the day of treatment (every three weeks). I am supposed to call if I have a fever of 100.5 or higher. It sounds like they will not do anything to increase my counts unless it is needed. I get steroids for 5 days (dose tapers after 2 days) starting the day before my treatment. My understanding was that the steroids were for side effects and to help fend off any allergic reaction.
I can't say anything about fills because I had a lumpectomy--actually two surgeries because I was node positive and the margins were not perfect the first time.
A warm, sorrowful welcome to the newbies. However, you couldn't have found a better site on which to land. This the place to go for well-informed advice, moral support, and cheerleading. Who would have guessed that a few clicks on a mouse could lead you to an amazing group of women?
By the way, my doc insists on 64 ounces of water a day. I could be wrong, but I believe that the water and the hydration (2 liters on the day after treatment) has really helped prevent other side effects.
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Ellen--I had a mastectomy and TE put in place on 1/6/09. I have had 3 fill since then with no problems, and I will be really glad to have the exchange hopefully in June--a month after my chemo finishes. You need to do what you are comfortable with--talk to your oncologist and PS and make a decision based on your needs.
I have not had Nuelasta, and like Mary Ellen, they check my blood right before my TX every 3 weeks. My counts have been ok so far.
Have a great night.
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Thanks for the replies ladies. I went to the PS with my count sheets and he was hesitant at first. Then when he learned it was my off chemo week and I would go in for a CBC and get Neulasta to boost them if necessary, he felt it would be OK so he added 60cc's. Onc's office said to come in anytime this week for blood count. So I think I'll go tomorrow rather than Fri. and if they are lower still, they'll give me Neulasta. Like Dune Oaks, they only do so if necessary. So if it is tomorrow, I'll feel better protected against infection and ready to resume again next week.
Must say that I started with empty expanders so it is nice to feel a bit of a chest again. And though they are still expanders, having something in them gives them a little more softness. My chest doesn't feel any tighter than it has all these months either.
Will keep you all posted and best wishes to all.
Ellen
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Rekoz: Do not forget to take claritin D the day of nuelasta. It is anecdotal but it is very very effective in the relief of bone pain.
Rockstar; As far as the node surgery. I had a sentinel node biopsy. They removed only three. What type of node surgery did you have? My scar is about a inch and has healed well enough. You can still see it though. I have started to get some feeling back in my underarm. How about you? It is painful l when the rejuvenate. I still have a little breast pain too. Yippie on your #4. It makes it seem like this just might end huh? Oh I wanted to tell you that with a 3.3cm tumor she had to take out a tennis ball size (yikees). But there is no real difference between the two girls. How cool is that. I am grateful.
Love and forgiveness are the better than chemo for healing! Loving yourself and forgiving your self! Know that you are coming to perfect health.
INHALE, EXHALE, INHALE, AHHHHHHHHHH
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I bit the bullet today and shaved my head. I wanted to last night, but my emotions got to me. But after a bad nights sleep, felt like someone was pulling my hair all night, I couldnt take it any more. I decided that I was going to wear my wig today because of an event I had to go tonight and my hair was coming out in clumps this morning...I have yet to see myself though. I am not sure of the emotions that will happen so I am just avoiding all mirrors. I am sure I will be okay in a day or two, but for right now I just cant look at myself. I have to say...that my head feels soooo much better. I should have done this last night!
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SMILE I am sure you are beautiful! Your hair does not make you who you are and you are brave to take control and shave it off! I forget I am bald all the time. My 15 year old daughter says she loves my extremely short hair! (it is starting to grow in). I just want to encourage you to hang in there and be proud of your new look. I honestly feel beautiful with no hair. You should too! I am sending you a big hug!! Traci
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Awww Thank you Traci! A big HUG Back to you! I am sure that I will feel beautiful soon.....just have to work my way into it. I am a strong woman and this has by far been the most difficult thing I have ever been through...But I will be OK! WE ALL WILL BE OK!0
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Smile-I too had a hard time with the hair thing. I let it fall out and then i started pulling it out in clumps. I could no longer take it so I cut it off! I felt "free", that I finally had some control. I loved my hair, but I love life more. So I had to look at it like that. I have my last chemo on Friday the 13th (my new lucky day) and then my hair will come back. I can't wait to toss the wig! Best of luck to you!
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Thanks for the heads up Bold. I have read so much about bone pain on these boards and have no conception of what it feels like. I surely hope not to learn so I will get that Claritin. BTW, do you get this shot in the butt? I haven't had a shot in I don't know how long. Like many, I never do well with them!
Smile- I am a week ahead of you on the head shaving. The experience for me has been the very definition of OXYMORON. On the one hand, it IS a shock to see myself and I would have to admit that the mirror is not my friend these days! Not that I have ever been extremely attached
On the other, it IS SO much more comfortable to put anything on my head. Not having it hurt like it did is great! I happen to like my wig. It's obviously not the same feeling as my own hair and has it's drawbacks. But I really like the way it looks- so close to my own style b4 I began the "cutting shorter and shorter" process. So in a strange way, I feel more like my old self. I think it's about the only thing that makes me feel that way since this all began. I am really not able to "embrace" myself in a shaved head but since there is "light at the end of the tunnel", I can do this.Wishing everyone the kind of day where cancer does NOT have to dominate!
Ellen
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Shari, we're on the same schedule! I'd had it with all the hair coming out and moved up my 'shaving party' to last night! My daughter brought food and drinks and my son did the honors of shaving. He's bald so he says we're in the same gang now. We laughed so much and took lots of photos. He made me a mohawk first and I had to put on a 'mean' face for photos. It was hard because we were all laughing so much.
I LOVE my lil shaved noggin--so much better than hairs flying all over and down my back! It's cold at night though! Make sure you have a cap that's nice and soft for sleeping.
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Traci, my tamoxifen metaboism test can back fine. I will start the tamox tomorrow. Lisa
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ReKoz, I didn't see anyone answer your question about the WBC. Normally around half or more (the test results of my HMO says normally they are 41 to 81%) of your white cells are Neutrophils - the white blood cells that fight infections.
In my understanding, the netrophils are the ones that normally get hammered by chemo because the life of a neutrophil isn't that long and chemo interferes with the production of new neutrophils to replace the ones that die off naturally. It is the neutrophils going down that can make you vulnerable to infection. Also, if they get really low, that can make you feel really exhausted and it can cause a fever even if you don't have an infection (a neutropenic fever). So that is the part of your white cell count that your onc is looking at.
Neupogen and Neulasta are drugs that cause your bone marrow to make more neutrophils. Neulasta is a stronger long acting drug. My onc said that one Neulasta dose is about equal to 10 Neupogen doses.
My onc said that not everyone gets low neutrophil problems from TCH so she doesn't give Neupogen or Neulasta unless there is a problem like your onc. Many others here have oncs that give one of the drugs to everyone. A week after my first chemo, my neutrophils went to almost zero, I felt really lousy and my fever went over 100.5 even though I had no infection. So she prescribed Neupogen. For each chemo after that I had 3 Neupogen shots. Starting about 4 days after chemo, I gave myself 1 shot per day for 3 days. Neulasta is most commonly given one shot the day after chemo but some people get it right after chemo.
I used the same spot that most people do for injecting themselves with Neupogen. The abdomen. Injecting myself was something that I didn't think I'd ever be able to do, but a nurse gave me instructions and it really wasn't bad at all. That area is easy to reach and has very low nerve density so it barely hurts at all.
BTW, I didn't get bone pain from the Neupogen. It may be the cause of the nausea I get in week 3 - that is an uncommon side effect that it can have.
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Lisa, my RBC was really low Monday from my last chemo three weeks ago. I had to have another transfusion of two units. On platelets, 20 days after chemo seemed to be the nadir for mine. After the 4th and 5th chemo, my onc said they were two low to get the next chemo and had me retest them on chemo day. Even though it had just been a day or two they came up a lot and I was able to get chemo. So platelets can get low and come back pretty quickly. Mine got low enough that I got patechiae (little red blood dots under the skin).
Also my magnesium level was low so they gave me some of that.
For the newbees - Transfusions have some risks so they aren't something to wish for BUT if your RBC and hemoglobin get really low so your onc says you need a transfusion, getting one can make you feel a lot better. I'm really glad I got that transfusion. When my RBC got so low, the slightest exertion would make me breath hard and feel exhausted. Walking up steps seemed like a huge effort - my muscles were oxogen starved. I got the transfusion Tuesday and almost immediately felt much better.
Bold, I got the "maybe we need to postpone chemo" before my 5th chemo too. In my case, it was because my platelets were low and my creatine was high. I really didn't want to postpone because I had a business trip set to fall in the 3rd week so if chemo was postponed I might have to cancel. In my case, the doctor retested. I'd gotten the pre-chemo test two days before and fortunately the counts had recovered enough on chemo day for me to get chemo. She also dropped the dose of taxotere and carboplatin by 10% because my counts were going so low.
Then before the 6th chemo the same things were low again and my onc suggested not doing the 6th chemo at all - just stopping at 5 - which really bothered me for some reason. In the end she agreed to let me get a blood test again and they had again improved enough for her to allow me to get the 6th chemo if I would get extra blood tests (at one and two weeks after) so they could monitor me and treat if necessary. Maybe I should have gone with her suggestion to not do the 6th chemo because it was a pretty rough one. It is the only time I have been so tired on week 3 and I had nausea in the evening all week 3. The other times I have felt close to normal on week 3. But I survived all that and I think in future years I'll feel more comfortable knowing that I had the full 6 treatments.
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I went commando today in public for the first time. It happened partly by mistake. I haven't been bothered by the idea of showing my head, but my bare head feels chilled so easily and it is hard to predict whether the indoor weather whereever I'm going will be warm enough for a bare head.
This morning as I was getting out of the elevator on the way to breakfast at my hotel, I realized that I'd forgotten to put on my hat. I thought about going back for it but decided that I didn't feel cold and didn't bother. No one freaked out. No one stared (at least that I noticed).
Possibly it made them be extra nice to me - when the waiter came to collect the signed bill, he offered to get me a to-go cup of my tea which I've never had happen. And he even brought out the right tea bag. And then one of the supervisor folks came over to ask me how my meal was. But maybe it was because toward the end of the meal I had gotten up to use the restroom and he was worried I had left without signing the check and he was glad when I came back. How to use the restroom is always a problem when eating alone - I had purposely not signed the check because I wanted them to not clear my plate away and that part of it worked though my napkin had disappeared so it must have been a close call. When I checked out the check out person mentioned that he had come out looking for me.
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Thanks for the info Bluedasher:
I am so spent today. I think I might have a little chemo brain too. I have been having a hard time remembering things and have to reread my post and business e-mails. It is day #3 after tx #4. I already feel like I have been hit by a bus. My favorite description is that it feels like I have been injected with expanding toxic foam. I have spend most of the day reading and napping with a very sympathetic black cat. Drinking Water like a banshee. I want this out of me as soon as possible. I must say that I can not remember any-other treatment hitting me so hard so fast. Maybe it I will get better quicker too. (slim but possible)
I hope that I will not have to postpone any treatments I am with you. I have this whole ordeal planned. I pray that all goes well. Thank you for your care.
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Bold: #4 Sucks!!!! You are starting to get a cummulative amount of the drugs in your system. Now is when the blood counts start to tank and you feel like you have been run over by a - tank! You are only day 3, day 4 will be just as bad, if not worse. Stay home, in bed, with your computer or a good book. Better yet, curl up with the cat and take a nap! The only way to get thru #4 is to rest. You will be fine by Saturday. Hang in there Honey. You are in my prayers.
Dasher: My red spots just started today. I had gone to the gym last Fri and worked with my trainer. On Sat my legs felt like I had been in an Iron Man Power competition - found out today that my potassium is also very low. So between the platelets and the potassium, it is no wonder my muscles feel like crap and I can't recover from anything. Saturday I came down with a head cold to add insult to injury.
To everyone with low white counts: My onc is one that gives Nuelasta after every TCH. The shot is ONLY given after 24 hours from chemo tx. Insurance WILL not pay if given before then. I got some bone pain with my first shot - took some aleve. Got some pain after 4thtx and some after tx 6. Each time the pain was lower back and front thighs. Frankly, I had much worse lower back pain from menstrau cramps in my younger days. If you need the Nuelasta for your blood counts, don't let the pain scare you away.
Blood Transfusions: If your doc says you need one DO NOT ARGUE!!!!!!!! You will feel so much better. Low blood counts take away your ability to function - literally. When I went in for my transfusion, I could not walk across the parking lot with stopping to sit down and breath. I came out skipping!
Lisa's words of wisdom for this evening.
PS: Gramma - thanks for checking in. Love Lisa
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Gees louise lisa: My prayers right back at you. I am so sorry that the end of your stay at camp chemo that is keeps raining. You could use a break. Hang in there sister. Back to bed with heating pad and black cat. I did get a movie for tonight Walli. Hope its good. Talk tomorrow.
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Bold: I chose off-beat humor for my "final chemo confinement days" I layed in bed and watched Jeff Dunham. He is the ventriloquist that does Achmed the Dead Terriorist, Walter, Jalepeno on a Stick and others. For some reason, I just loved him during chemo. His act will not make you cry, it is not offensive, but not politically correct either. Just funny. I found this to be a good mix for me. Just my sick twist - have a good evening! Lisa
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Blue Dasher- Thanks so much for the most informative and consise info.regarding WBC that I have read to date. At least my chemo brain could comprehend and make sense of everything you said. NOT an easy thing for one to get across to me these days! I did go in for my counts today and Onco. was there for the nurse to run the #'s by. Still OK with him, it's the neutriphils (or whatever is closest to that word
that he goes by. Though total count is low, those #'s are still within acceptable range so no shot required..even with fills considered. This man is very learned and well respected...as well as kind. If he's OK with that, then I have to tell myself I'll be OK,I am also on the January chemo thread and as is the case here as well, everyone seems to be having a rougher time of it. It did seem easier in the beginning, sort of like a false sense of security. Now we are all feeling so beat up (Maybe cuz we are eh?). Most of us there are at the 1/2 way mark and as much as that is a milestone of sorts, the feeling of wanting to get this over with is becoming fierce. I am a half glass full kind in general but now it's taking more work to keep it up. As long as I allow myself to feel the negative or sad feelings that arise, I'll be able to keep that glass half full. Thank God I can come here, read, feel and vent all of the burdens that come with this bc! You are all wonderful sisters to travel with.
Blessings, Ellen
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Ellen: Please keep that glass half full! Read what Bold has written. For those of us getting 6 tx, # 4 is rough. Straigten up your spine, pull your shoulders back, and march on!!!! Drink that water, take those stool softeners, get that blood shot!..... March on soilders, march on! Your battle is almost over!
Sorry, that was more than little over the top. But ya'll get the message. I do love you all and you are in my prayers.
Lisa (the out of control counselor).
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Good Evening Ladies,
I had my first "Herceptin-only" treatment today. It was a breeze. Nothing but a slight headache so far. Ladies, this is VERY doable. For those of you that are on those last few TCH's #5 and #6, I promise you that it gets easier. I'm praying for you all...every day. Hang in there. Ask for those extra fluids with your infusions. They flush the drugs out of your system and don't forget to keep drinking water throughout the day. Keep that cup of water on your night table and sip it each time you wake during the night. It helps to keep those mouth sores at bay.
It was my experience with Neulasta that it was less painful when I had them give me the shot in the belly. I took a Claritin 24 hour pill on the day of the shot and for one day after the shot. Be careful not to take too many Aleve, since they can affect the kidneys. The Carboplatin is already rough on the kidneys as it is, so try and stay away from the Aleve if you can. Tylenol is a good alternative. As Lisa mentioned, the bone pain that the shot caused was not any worse than a menstrual cramp in the lower back.....not too bad, really. It only lasts for a day or two and then it goes away, so not to worry too much.
There were a few days, especially after TX#5 and #6 where I became VERY winded and couldn't walk more than a few steps without stopping to rest and catch my breath. I was concerned that I might need a blood transfusion. My oncologist said that my counts were low, but not low enough to warrant a transfusion. For those of you who are worried about transfusions, my sister called the local blood bank here in New York and for a fee (I think around $150) they said they would take blood from her and hold it for me for up to 3 or 4 weeks(I don't remember the exact time frame). The turnaround time was about 4 days, so once my doctor ordered it, my sister could donate and then 4 days later I could get the transfusion. It turns out that I never needed the transfusion, so my sister was spared the trip and I never went through with the arrangements. If you are concerned about blood transfusions and think you may need one and you have a family member who is the same blood type as you, it's worth a call.
Stay strong ladies....we are all going to be just fine.
Anne
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