Taxotere, Carboplatin and Herceptin
Comments
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I was supposed to have treatment #3 today, but no go because my blood levels were too low. WBC were at 2.7 and RBC at 10.7. Now I have to do both neupogen and procrit shots this weekend. Has anyone else had to do both shots at the same time? I had 2 neupogen shots a few weeks back after treatment #2, but have never had the procrit. What can I expect from that one? I didn't think 10.7 was very low for RBC. Is my onc just being conservative? She said she just doesn't want them to drop any more, which they will unless I start the procrit now. She wants me to do it once a week until my levels are back to the mid 11's.
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weety do you mean your HGB is 10.7? Mine is down to 10.5 and my WBC are 4.8. I go for chemo #5 on Monday. My doctor seems satisfied with that. I have been getting neulasta after each traetment.0
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Yes, I guess the measurements are for the hemoglobin. I thought that was the same as the red blood cells.
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Weety, hemoglobin of 10.7 isn't that low. I got chemo lots of time with my hemoglobin that low. And your onc shouldn't be giving you procrit even if your hemoglobin and RBC are low. The warnings for it say not to use it for chemo (except for stage IV where there may be no choice for someone who has to be on chemo long term and then there are recommendations to not use it when the level is just a little low). Procrit has been shown to increase tumor growth for various types of cancers including breast cancer. When you need red blood cells, they should give you a transfusion.
Normal hemoglobin is 11.5 and mine has been running a little low still even though I've stopped chemo. My onc said that that may be the Herceptin. My hemoglobin has been slowly climbing back up. It was around 9 after chemo and has recently gotten back up to about 10.5. And I've been feeling fine with plenty of energy despite the low level.
My onc gave me a transfusion when my hemoglobin dropped to below 9 during chemo. I had one before my 4th chemo and one 3 weeks after my last chemo - 2 units of blood each time.
Usually they do a blood count of the RBC and also measure hemoglobin which is in red blood cells. Those usually track about together but they are slightly different measurements.
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It is true about Procrit or Aranesp. the FDA said not to use it unless certain things are present. One of them is the stage IV and also if you have had a lot of transfusions and still have low counts. Also one of the things is your count should be below 10 to receive it and you must have had tried transfusions. Now to say all that if your iron is too high and your HG is low they will not give you a transfusion because that will raise your iron too high which can be another problem. I always got Neulasta since the Neuprogen did not help me much during chemo. I got Aranesp right away but after 2 of those the FDA made their ruling not to give unless certain factors were present and they have to file a thing with the FDA why they are using that. Ask the onc why they are giving you that. there are also risks with transfusion and even chemo can cause other cancers so I am not sure about it all. I guess you either trust your doc or you don't. I am beginning to wonder about mine but then I think a lot of us do. I found out my onc had prostrate cancer before I started going to him. I guess he knows the fear we feel. I am not sure he took any chemo though.
Carolyn
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THanks Carolyn and Bluedasher. Now I really don't know what to do! I'm d##med if I do and d##med if I don't! I know what you mean about trusting your onc. I want to trust her and expect that she has the expertise to make decisions for me, but then I question her choices when I hear about things like this. I think (my opinion) she is trying to give me a small boost for the red blood cells at this almost half way point, in the hopes that the effects will last through the end of chemo. She gave me only 4 vials of procrit to take once per week. She more or less said something about not needing anymore after that because RBC go up slowly, but they also go down slowly. This will at least "steady" my numbers before they get too low. What do I do????? If anyone else wants to chime in, please do! I need all the input I can get!
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Weety - my advice is to bring your specific questions and concerns to the onc. Ask her specifically "It says not to give Procrit with chemo and yet you are doing that. Why is that?" She may have reasons to override the recommendations on the drug. Or her reasons may not resonate with you and you may choose not to follow them. Either way, I think you need to press her to learn more of her thought process so you are more confident making your decision.
I know, for example, when they wanted me to take the Neulasta shot, I pressed very hard as to what would be the risks/concerns for not getting it and waiting to see if my counts rebounded by themselves. I asked a lot of questions about what would happen if I took my chances and waited. That is what I ultimately decided to do - not get the shot and see if my WBC count passed on its own - which it always did, and I never needed the shot, which I had heard SO MUCH bad stuff about. But I felt informed going into my decision and knowing what would happen either way.
Perhaps you can do something similar.
Good luck. These judgement calls are scary. But I am confident you will make a good decision.
Amy
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My onc told me that exercise is very important for keeping anemia at bay. This seemed to be true for me. I exercised at least 5 days/per week throughout and my hemoglobin was typically low, but definitely in the acceptable (for chemo) range - except for one period over Christmas when I wasn't very compliant with the exercise. When I returned to being compliant my Hb went back up.
I managed a pretty aerobic workout at the gym for the first couple cycles. After that, exercise for me consisted of fast paced walking for 50 -60 minutes/day. You may want to try forcing yourself to increase your exercise level to see if this helps you for future treatments. I know its can seem like torture to even start - especially when you are already so anemic, but after you get going its not so bad.
For the immediate issue, I agree with the others, you should get a transfusion, not ProCrit. I am really concerned that your onc is suggesting you take it.
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CCBaby I go in tomorrow for my 4th Herceptin . how can you be on your 10th when I was only a week behind you? Are you getting it once every 3 weeks like I am? You are speeding ahead of me. I am doing pretty well, my hair is probably 1/2 inch long, it seems like it takes forever to grow , but my friends say its growing , they notice it more than me. I still wear hats or scarves when I go out, not quite ready to go without, except at home. My eyebrows are back, but eyelashes are sparse, but then again they were never that great anyway. Still on Coumadin for another month or two. Then will have to start Tamoxifen.
Hope everyone is soing well.
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Wendy....I am counting the ones along with the chemo too. I will have a total of 17.0
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I thought I would be through with my Herceptin a month before I was and was so disappointed when he told me one more. I even argued with him so I guess he is the boss about that. I am sure he gets that from others and not just me. If you have to have 18 just take it and you will be okay. My onc went by months not tx I guess because he thought he was showing me on the calendar and it still added up to 18. I am finished and getting sassy I guess because I feel better. I just wanted all that to be over.
I have an older friend I go to church with that has just gone through chemo and she had a few problems but made it okay and now they are telling her radiation. She is over 80 and has a pacemaker and they want her to have it removed or moved to the other side but her port is there. she talked to the cardio and he told her just leave it where it is and it won't hurt the pacemaker. He turned it down to see how she would do and she is not doing good so she wants it back where it was. He told her if it damaged her pacemaker they would replace the pacemaker and it was a wiser choice than to move it. I told her to ask more questions about where they were going to do the radiation. They are telling her just in a certain area because she did not have lymph nodes with cancer. I know they told me one thing and did another. I was very unhappy with my doc on that. Anyway at the time I was not wanting to do radiation and really struggled with it. I do think we have a choice and like she said she would have it and deal with the pacemaker going bad later. I am so glad I did not have her problems. Life's a beach!
Tell all your friends Oct is Breast Cancer awareness month. Even the Pro football people are wearing pink. Men get breast cancer too! Tell them to get checked and DO self exams at home. I found my own that way and the mammogram before had not shown anything. I always checked my lumps because I had fibrocystic breasts. We have to be the ones to keep people remembering this and save lives.
Carolyn
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I asked this over in the Radiation forum, but didn't get much response.
I'm questioning the need for radiation. My oncologist had me line up radiation even before she got the reusults of a contrast MRI and the clean reports from surgical pathology. The last time I discussed rads with my surgeon he said to wait and see what the dble mast pathology would show.
What do they have to radiate? There is no sign of cancer in nodes or breast tissue, breasts are gone and I continue on Herceptin until April. I've heard that once you've done a full course of radiation that, should you develop another cancer, radiation cannot be done. I don't want to take that option off the table unless necessary.
Questions, questions, questions.
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Swampy....In the beginning, my radiologist was iffy about me receiving rads because I had clear margins around my tumor, only one node involved out of 13 removed and a mastectomy also.. He suggested that I get a second opinion from a breast specialist out of town. I met with her and she went over my case very thoroughly and she did recommend rads for me. IN MY CASE, because of my one lymph node involvement and being er- and pr-, there have been studies over the last 15 years that show the benefits out weigh the risks and my chance of recurrence is less than 5% compared to 25% if I didn't do rads. As you already know, every situation is different and since you have no node involvement, it seems like you may not need them, but I don't know your whole case. Have you met with a radiologist yet? If you haven't yet, then have him go over everything thoroughly and see what he recommends for you.0
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Hi guys! I am so sorry I don't drop in more often. I do read all of the posts and try to stay up. Sound slike everyone is doing well. Does anyone have an update on Cupcake? Gramma, it is always a pleasure to read your posts.
I have "light at the end of the tunnel" news for those of you still going thru treatment. I get my last herceptin Oct. 20th. I needed a new surgeon to remove my port (original surgeon is a pervert, long story), so my onc has me scheduled to meet the new surgeon Oct. 13th so the port can be removed ASAP after the last tx. I really want this thing out. When I ride my horse for 2 hours or more, the area around the port aches horribly the next day. I am leaving Nov. 6th for a 5 day horse camping trip and plan to spend 8 to 10 hours a day in the saddle - the port must be gone!
Swampy - I had a double mast., 6 TCH, plus the year of herceptin and no rads. I did have 2 nodes positive and I am er + pr+.
Bold, my blood counts have remained normal during H only, but my folic acid stays depleted. Who knows.
Take care everyone!!! Lisa
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Purple Toes & Blue Tattoos!
Good Evening Beloveds!In my quest for most things "normal" I took the leap of getting a pedicure on Saturday! It was great to spend time doing something I did on a semi-regular basis prior to cancer, with good friends Z & her Mom, Ms. C.
My feet were SOOOO cruddy, and in dire need of some TLC. The toenails on my big toes both had a thick black line across them (a gift from chemo), so I picked a nice dark purple color so the black lines wouldn't show through.
I keep looking down at my toes. And now that my left breast is gone, I can look STRAIGHT DOWN on one side! LOL!!!
Today I had my simulation for radiation. I got my AquaCradle made. That part was fun! You lay down on a bag filled with a warm compound that rises up around you and molds to your shape and eventually hardens. This "cradle" will hold my body in the same position day after day when I go in to get the radiation treatment.
Not so fun was the tattoo-ing part. I don't know how people get "real" tattoos! I got 3 little dots, and those pin-pricks nearly sent me off the table they hurt so much! Geesh!
Anywhoo, I got CT scans today so they could map out the angles they need for my radiation. I'll go in next Monday for verification, and hopefully start real treatments on Tuesday. I was hoping to start Monday, but oh well.
So while waiting in the docs office for one of my appointments earlier in the week, one of the "cancer mags" caught my eye. They had an article highlighted in it called "Sex & the Single Survivor."
First I had to search my subconscious to remember was "sex" was, and when I remembered, I thought, Hunh, yeah, one day, you're gonna have to date again.
Now dating sucked big hairy monkey balls BEFORE cancer, I can only imagine dating will be a beast of a completely different species now that I'm the Bald & Boobless Wonder!
*sigh*
I read the article with great interest however, and they had this fascinating chart; How to tell the Boys from the Men. Some of the points that stood out to me were:
You're Dealing with a Boy if:
* He treats you like a charity case who should consider herself lucky to have ANY man in her life
* He doesn't want to hear any details of your cancer treatment
* He won't commit to a relationship, after all, you might get sick again, and he couldn't handle thatIn the small snippets of time I've even thought about dating post-diagnosis, those three issues rose immediately in my mind to get me to STOP thinking about dating....EVER AGAIN! LOL!!!
I'm really not sure how I'm going to navigate those issues. All advice is solicited and welcome in that regard.
The article goes on to regale the therapeutic value of shopping for (and wearing) lingerie and ordering (and using) sex toys.
Much to the chagrin of my more trendy girl friends, I've never been one to be worried all that much about looking sexy via my clothing or shoes (or purses) LOL!!! I believe in comfortable shoes cuz limpin' AIN'T sexy and while stilettos look great on the right person, I would break my A$$ trying to wear them and walk in them. (yeah I know, they're not for walkin') Whatever...
I saw a flannel t-shirt/nightgown in a catalog that said "This IS my sexy lingerie!" and I think I'm getting it for myself. :-)
I fervently await the day when comfortable becomes SEXY!
As to the sex toys...all I can say is this. When asked if my biological clock was ticking, I responded "Nope, I took out its batteries and put them in another device!"
CTFU!!!
Night Night Ya'll! Alaina
*PS ~ but seriously...if you have some REAL advice for a single cancer survivor trying to find some meaningful companionship...I'm all ears (and one boob!) LOL!!!*
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Christy, yes I realized later that you were talking about all the Herceptins since the beginning. ya we are still on the same schedule.
Swampy. I was also told I didnt need radiation, even though I had one positive node, and had a bilateral mastectomy. And I have also heard that same thing about radiation, my aunt had it and now if it comes back she has already had all the radiation she can have. Also my plastic surgeon said she does not do implants on radiated tissue.
Gramma. I found my own lump too,,,,, the radiologist who looked at my mammograms was going to send me home for another 6 months, he didnt see a problem, but since I felt a lump they did the biopsy.........and all hell broke loose. I don't see why your friend needs any radiation if she had no nodes involved.....better to take care of that pacemaker, she has enough problems already. I hope she is okay.
Lisa ,, How are the Tamoxifen side effects treating you now?
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Alaina.......... you are hilarious and we all love reading your posts!!!!
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THanks to all who helped with responding to my procrit issues. I posted this same info on my august chemo thread. Now, after hearing all the bad things about procrit and breast cancer, I'm afraid to use it!
Soooo . . . . I did my research like we are supposed to do, right? And now I'm feeling like you're d###ned if you do and d###mned if you don't. I found several studies/articles that some of you must have been referring to about NOT using procrit with chemo for breast cancer. Even the FDA recommended not using it if the treatment was for a "cure." But then I started finding studies that really made me nervous about not doing it and keeping my body in a state of anemia because it can cause tumor hypoxia (low oxygen) and tumors thrive with low oxygen because it promotes angiogenesis (forming blood vessels by the tumor)!!!! I also read the anemia during chemo can reduce the response of the cancer to the tumor and reduce chemo effectiveness (probably all terms that mean the same thing, just stated a little differently.) One study even showed that anemia increases local breast cancer recurrence! And one of the studies wasn't even talking about major anemia--this study recommeded keeping the hemoglobin levels above the low normal values to prevent these negative consequences! Now I really don't know what to do!
I guess knowledge is a curse sometimes!
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Good morning ladies.
Alaina, you crack me up girl!!! I was spewing my morning coffee over the batteries!
Wendy, I guess I have just gotten used to the tamoxifen side effects, like anything else, they become a way of life. The Effexor does really help, but some days the hot flashes are just worse, last night was pretty uncomfortable, but tomorrow may be fine.
I am off to ride my horse in the record breaking high temps for October in Florida!
Lisa
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Alaina, I would not have any input on dating after cancer but I know sex is not a walk in the park even if you have been married a lot of years. It seems my estrogen has messed up some things down south and so everything has to be rethought. I also have not had a breast removed but the one affected is so sore still from radiation. It is hard as a rock from swelling and I finished rads in March 2009. My onc said it could be 2 or more years before it settled down. What? was my answer. I think I would rather have had it gone. Dating I understand is not great even if you are a skinny beautiful model type. men are animals at times and they think with the wrong head. I love my husband and he is kind, I got lucky for sure. Plus he has had his own health problems so he understands. I guess if you look for a companion look for a man that has had health problems. They understand. I know my advice is not great in this area for sure.
I have not heard from Cupcake. I need to write and check on her. She was doing great last I heard.
Lisa I am glad you are able to deal with the Tamoxifen. I also want my port out but they say NO! for me. 2 years of running up there to have it flushed every 6 weeks and I am supposed to be getting my blood tests every 3 weeks but I didn't this time. I hope it has started coming up on it's own. We have been walking in the mornings and I really get tired but I must keep it up.
Carolyn
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Alaina, my husband has decided he wants a divorce so I'll be dealing with the dating crap too eventually. There's got to be somebody on here that has some tips for us! Maybe we should start our own thread of horrible and hilarious dating-after-cancer stories...although my husband has agreed to hang around for a year so I can finish treatment on his insurance, so it'll be awhile before I put myself out there!
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TwinMom ~ I'm sorry you're facing divorce on top of everything else you have to deal with. I'm sure there's a thread already, but if not, I'd be happy to start one.
Ok, there is a new thread called "Dating, Sex & the Single Survivor" under the Forum Moving Beyond Cancer.
Alaina
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Congrats Becky!!! You have proved that you are a strong woman. You can do anything!!!! YIPPIEE!!!!!!
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Hello To All been awhile since I have posted I read the posts every other day or so just been caught up in life.Hooray for you Lisa 1964 almost done 1 more I cant wait to Shout Those Words and then NO MORE !!! I also am ready to be rid of my port my last Herceptin is Dec 15th my port removal Dec 18th, I am ended 2009 done with it all !! 2010 is going to be a good year for me!
My hair is very thick its probably over an inch and totally unruly but I love it People want to touch it cuz it is so soft, No bangs to speak of yet they grow really slowly
I still wear my bandanas around my forehead, Bold Thinking strong thoughts and prayers for you Baby Hang In There !!! Remember This To Shall Pass Love to you Sista!!! 0 -
dear swampy, Yes if you use Rads now you have used up that card. I had DCIS with some .5 invasive cells, 2 yrs ago. Did Lumpectomy and 33 Rads which is standard of care. I had a recurrence. I was er-pr- and her 2 +. So now I've had a mastectomy and am on chemo and herceptin. I wish you well with your decision. arby
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arby,So sorry you have to deal with this again but this is hoping the chemo and Herceptin works great for you. I did the rads and chemo and Herceptin because that is what they said for me to do. I went into the rads with a big ? but I still went for it. If mine comes back I guess my choice would be more chemo and hopefully something new too. I had lump. & lymph nodes with cancer. I know my chances are greater for recurrence but I am not going to worry about it but be diligent.
Have a good day everyone.
Carolyn
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I am happy for the ones on Taxotore who got thier hair back there are alot of us who have not I have been out of chemo since August 08 and I have to wear a ball cap everywhere in public if anyone has a problem come join our group so you dont feel alone. And for the lady who husband asked for a divorce first off what a jerk he is and dont let him ever drop you from your ins. it might be hard to get picked back up and its never over the tests etc so put it in your divorce degree or dont divorce him look into it I am telling you the truth and trying to help anyone going through a divorce and this terrible deasease...
Maura
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I was never NEVER told that I could only use radiation once but I was never told my hair wouldnt come back using Taxotore.
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enjoylife, I think we are not told a lot of things but then if I weigh the cost hair or life I take life. I do not enjoy wearing hats scarfs and I guess a wig ( I never did) but I would not like not ever being with my family either. I am not afraid of death but I would like to live a little longer with or without hair. Mine is not long and looks horrible but I am alive so far. I hope you can find something to help but unfortunately I do know others that have not gotten their hair back. I used to have long hair and even donated some for children but as much as I miss my hair there are worse things to loose. I wish you the best!
Carolyn
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Okay, I've consulted with both my oncologist and my surgeon regarding the necessity of radiation. Apparently the course of chemo, surgery, then radiation was laid out at original diagnosis based on the size of my tumor and involvment of the sentinal node at that time. My tumor was 4.5cm when first measured. Even though the surgical pathology (after chemo) showed no cancer in breast or nodes, my "fate" was set from the start. The need for radiation is not determined by where you "end up" after chemo/surgery, but by where you started. I'm comfortable with that explanation so onward we go to radiation.
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