Taxotere, Carboplatin and Herceptin
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Thanks everyone.
Congratulations Swampy!
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Awesome Swampy! Congratulations.
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Hello all my fellow herceptin ladies! Question on Muga scan. I had my first one today since starting chemo and the tech said my numbers dropped about 11% and they dont like to see a decrease in function of more than 10%. Of course I cant take his word over the doctor but kind of has me worried. I go for tx #5 tomorrow and am meeting with a different onc doctor as mine is gone this week.
My muga in december was 63% and now it is 52%.
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gramma23 - I hope your punch biopsy comes back ok. That is the kind of biopsy I had for my diagnosis and I was sore but was able to hold my baby and do my "night" duty with him that evening. It took no time at all to get it all done.
weety911 - your platelet count is not to bad. normal is 150,000. I have been battling that as well but I am still on chemo. Mine got down to 44,000. I wish you luck in getting those numbers up!
Congrats to all that have finished herceptin, gotten deported and or finished all treatments!
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I haven't been on in several days--so much to catch up on. Lisa and Carolyn--I'm keeping you in my thoughts and prayers--hope so much that you both get good news! Seems like lots of people with "lasts" to celebrate. Congrats to all! I was in yesterday for herceptin and have 4 more to go. The end is in sight. Next month is the one year anniversary of my diagnosis. What a year it's been.
Becky
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Allison - I too got a Muga Scan before my TX #5 and my numbers dropped to 62%. He told me if my numbers went below 50% he would probably stop Herceptin. My Onc prescribed me Lopressor, a beta blocker, to protect the heart. I went in yesterday for my TX #6, YAY! my last chemo, and now on to Herceptin every 3 weeks (in leu of weekly), and on to RADS. I asked my Onc how would tripling the Herceptin affect my heart. My Onc asked me to take my blood pressure daily and call it in to him on a weekly basis, and if needed he will increase the dosage of Lopressor to keep my percentage from dropping and protecting the heart. Let us know what your ONC tells you after your visit. Good Luck with TX5!
CONGRATS TO ALL THE BEAUTIFUL LADIES THAT HAVE MET ALL THEIR MILESTONES!
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CinCan: Congratulations on finishing TCH!!!! I had my last TCH last Wednesday - just starting to come good. Hope you don't suffer too badly. I and 2 other girls had a really tough time of the 6th one.0
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Suepen - Thanks and Congrats to you too....hopefully the worst is over for you. I feel good this morning, but I always do the day after. It's all the additional meds that are given with the chemo and I take the last of steroids, today... so I will start to feel the SEs tomorrow. With each TX my SEs got worst... so I will probably have a tough time also:( Do you have any tips/suggestions to get through this next week a little easier:)
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cincan, does congestive heart failure make your blood pressure drop?
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CinCan: My tip is to SLEEP!!! I think I have actually recovered a bit quicker this time, although I spent half the night on the toilet.
I made sure I took the drugs for the leg pain before it set in.
Hope you're not too bad. The light is at the end of the tunnel. (((((HUGS))))))
Sue
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weety911 - I don't know if congestive heart failure makes your blood pressure drop. I've never had any problems with my heart before... this is all new to me. My heart rate is fast, but my blood pressure is low.
suepen - thanks for the tip. I took one nap already.... I think I'll go take another one:)
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Suepen and CinCan.....congrats on finishing the TCH. Its all better from here on out!
Christy... oh I didn't realize you were getting implants too!! on both sides, wow, how are they? did you get saline? Did you have to have more expanders at all? I thought the flap thing was because you couldn't do expanders and implants.
When my PS replaces my leaky expander, he said he can have a general surgeon come by the OR and remove my port at the same time.
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Just had # 4 of TCH today.
Have to admtt, I am kind of jealous everyone who is done with Chemo, done with Herceptin and getting there Ports removed. I think this has been asked before, but how soon after TCH is done and you are on H only does the hair start to grow back?
My last treatment is 4/28, hair about 6 weeks after that?
Juli-CA- thanks for the reply on the pulse in the ear thing. I agree it is hard to sleep on your side when all you hear is whoosh, whoosh, whoosh.
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stlcardsfan -everyone has told me that hair will take atleast 3 weeks to come back...since that is how long it took for it to fall out. But keep in mind (as I was told) that it has to grow thru the root so it could be a while before you actually see the hair. I have alot of peach fuzz on top of my head about an inch long.
I had tx #5 today and already do not feel good. It usually doenst start until Friday. My Muga scan offical results were 58% so the drop was only 5% so not as bad as we thought.
Good luck to all
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cincan, I was just curious because you said your doc was monitoring your blood pressure while on herceptin to make sure it didn't go lower. I was surprised because I would have thought heart damage would mean higher blood pressure. I'm like you--my heart rate tends to be a little fast, but blood pressure low. I had a Muga scan today. Hopefully all is well.
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stlcardsfan - I finished my chemo at the end of Oct and by Christmas I had an inch of hair. I now have close two inches. Everyone is different, but I think normally hair grows at a rate of 1/2 inch per month.0
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I finished at the end of July and went topless in early Oct for the first time. It was VERY short but I held my head up and pretended I was a fashion trendsetter!
So ladies - another insurance related disaster yesterday. I got a call from my onc's office (the branch I get my Herceptin at) saying that they could no longer schedule me for treatment because of my new insurance. My treatment is scheduled for TODAY! (Nice notice, right?)
Coincidentally I was at the main office of my oncologist getting my pre-H check up when the call came. I met with someone from Accounting. Turns out that they had 'noticed' that I had a high balance and decided not to treat me any more so I didn't run up a higher one. Now tihs is because I have a high deductible plan and it is the beginning of the year so I haven't reached my deductible yet and will be paying the balance from my HSA. I knew this and was prepared to do so when I go for treatment today. But I had not received a bill yet so was going to ask about it when i went for treatment. Make sense? I thought so.But no - no one even ASKED me about the balance. They didn't even send me a BILL! They just cancelled first! I had the presence of mind when speaking to the Acctg lady to say "We'd better go into a private office because I am going to raise my voice." So we did, and guess what - I DID raise my voice. I gave this woman holy hell for cancelling my treatment and not even asking me if I was going to pay the balance. And before I even received a bill! My voice was shaking and I think sparks were coming out of my eyes. Then she says "Well I understand how you feel - truly I do - I have cancer, too." And I was like DONT YOU DARE PLAY THE CANCER CARD WITH ME, LADY! (But I didn't say that out loud.) I CANNOT believe that they would cancel treatment BEFORE even talking to you about it (or sending you a bill). Does anyone else think this is a crazy system?
So finally I settled down and I made her call and reschedule my treatment while I was standing there. I wouldn't leave until she made the phone call. So it is all settled and I am leaving for my next-to-last treatment shortly. But the price I paid for this was really high - I was very upset/shaky/unlsettled the entire rest of the day and have been awake since 4am. I am still furious that they did that to me.So do you think I should let it drop or write a letter to the practice administrator do register some other type of complaint about their process? It just seems SO FLAWED to review the list of the people who will be receiving treatment the following day and cancel anyone who has a high balance. That is the way she described her system to me.
So now I will go down there and swipe my HSA card for $3000 and wipe the balance out as I PLANNED TO DO! But damn, couldn't they have TALKED TO ME about it first?
Sorry for the rant but this was absolutely devestating to me. NO ONE shoud have to deal with the stress of paying for treatment when you are going through treatment. I have been so fortunately so far, but this shows me how horrible it is.
Your thoughts? And thank you for being there. I know you all understand and that means more than anything.
Amy
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I finished at the end of July and went topless in early Oct for the first time. It was VERY short but I held my head up and pretended I was a fashion trendsetter!
So ladies - another insurance related disaster yesterday. I got a call from my onc's office (the branch I get my Herceptin at) saying that they could no longer schedule me for treatment because of my new insurance. My treatment is scheduled for TODAY! (Nice notice, right?)
Coincidentally I was at the main office of my oncologist getting my pre-H check up when the call came. I met with someone from Accounting. Turns out that they had 'noticed' that I had a high balance and decided not to treat me any more so I didn't run up a higher one. Now tihs is because I have a high deductible plan and it is the beginning of the year so I haven't reached my deductible yet and will be paying the balance from my HSA. I knew this and was prepared to do so when I go for treatment today. But I had not received a bill yet so was going to ask about it when i went for treatment. Make sense? I thought so.But no - no one even ASKED me about the balance. They didn't even send me a BILL! They just cancelled first! I had the presence of mind when speaking to the Acctg lady to say "We'd better go into a private office because I am going to raise my voice." So we did, and guess what - I DID raise my voice. I gave this woman holy hell for cancelling my treatment and not even asking me if I was going to pay the balance. And before I even received a bill! My voice was shaking and I think sparks were coming out of my eyes. Then she says "Well I understand how you feel - truly I do - I have cancer, too." And I was like DONT YOU DARE PLAY THE CANCER CARD WITH ME, LADY! (But I didn't say that out loud.) I CANNOT believe that they would cancel treatment BEFORE even talking to you about it (or sending you a bill). Does anyone else think this is a crazy system?
So finally I settled down and I made her call and reschedule my treatment while I was standing there. I wouldn't leave until she made the phone call. So it is all settled and I am leaving for my next-to-last treatment shortly. But the price I paid for this was really high - I was very upset/shaky/unlsettled the entire rest of the day and have been awake since 4am. I am still furious that they did that to me.So do you think I should let it drop or write a letter to the practice administrator do register some other type of complaint about their process? It just seems SO FLAWED to review the list of the people who will be receiving treatment the following day and cancel anyone who has a high balance. That is the way she described her system to me.
So now I will go down there and swipe my HSA card for $3000 and wipe the balance out as I PLANNED TO DO! But damn, couldn't they have TALKED TO ME about it first?
Sorry for the rant but this was absolutely devestating to me. NO ONE shoud have to deal with the stress of paying for treatment when you are going through treatment. I have been so fortunately so far, but this shows me how horrible it is.
Your thoughts? And thank you for being there. I know you all understand and that means more than anything.
Amy
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Sorry for the deletion. I was so upset, I kept pushing the "Submit" button and it posted twice.
But I'm ok now. 0 -
weety911 - they way my Onc explained it, as I understood it, was the medication is a beta blocker and will help protect the heart from the Herceptin, at the same time it lowers the heart rate and the blood pressure. If my heart rate continues to go up, he can increase the dosage, but he has to make sure my blood pressure doesn't get too low. I think he's trying to find a happy medium...does that make sense? If your percentage went down on your Muga Scan (hopefully not), please let me know what your Onc tells you. I go in with my list of questions and my Onc answers them very quickly and vaguely. He tends to want to deal only with what's happening at the time, then the "what ifs". He probably feels to much info is confusing, so he tries to keep it simple. Frustrating
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Amy - What a horrible day for you! I think you handled it beautiful and yes write a letter. If you haven't received a bill, how are you to know what your balance is.... and what about an advance notice of cancellation or some type of correspondence signaling a problem with your account before cancellation. What an infuriating way to end your cancer journey
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Amy: You should DEFINITELY call or write a letter to someone "in charge". That to me is totally unacceptable! You should have been talked to first before they go canceling a treatment that part of your cancer treatment! I don't blame you at all for being mad and letting it out! I would have probably reacted the same way and can totally relate to how it effected the rest of your day! So sorry you had to go through this but glad you got it straighted out!0
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AmyisStrong, I understand your frustration and I have been in a similar situation. I ended up paying more than I should have because of my insurance mess up. I do not think they should have canceled your tx without talking with you first and you bet your booties I would register a complaint. Not for you only but for others that do not have the knowledge to fight for themselves. I know when my husband had his bypass he had terrible care and we found out others had the same problem on that wing. One man lost a foot because he did not get good care. We all registered a complaint and when I was in the hospital later for heart problems (which ended up not being heart) they treated me like a queen. It does help and you better believe those people make the money off us and our insurance. I had seen others on SSI or Medicaid that pay $1. co pay. what is this all about? $1.00 Why? anyway I have paid my fair share and my insurance has paid through the nose too. they could at least give people the kindness to let you know there was a problem so you could tell them the plan. Now I am getting fired up. too bad I was not with you. I bet this woman working there got all her tx covered! I am like you, don't play the cancer card with me. I am sorry when someone has cancer of any kind but you are not cancer patient when you are working for the system and you mess my tx up. Okay I am though. I have had good care at the chemo place but insurance is another story for me. I hate it.
Thanks for everyone thoughts. We got our information for the trial med and we have to wait until the 29th for results of the biopsy and I need to have decided by the 30th and signed up. I read it yesterday and my husband is still looking it over. We will see! My Hemoglobin is still down but they said as long as it is above 9 they will take me so I got another Procrit shot. I was thinking about trying to do without it but I also found out I had too much iron. I don't understand how you can have too much iron and be anemic. Very complicated. the fact is my red blood cells were damaged by what? I should find this out!
Carolyn
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Amy you should absolutely right a letter and complain. They have collected enough money already that if you carry a balance BIG DEAL. I have a high balance plan also...so I feel you pain.
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Wendy....I wanted more volume in my flap breast because after it settled the past 3 months since my HIP flap surgery, I was only a B cup. I didn't need an expander in the flap breast, because I now have breast tissue there from my donor site from the flap surgery. The surgeon said that now since the tissue in my breast was not radiated tissue anymore, I could now get an implant to make me a C cup. I also got a lift and implant in my healthy breast to match. I have silicone and alloderm.0
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Thank you ladies so much for your encouraging words. I am back from treatment - it went fine. But as I walked into the building, all the anxiety and anger and upset came back up inside me. I met with the office manager (at my treatment site) and explained what had happened. She felt SO terrible that she had been the one to call and cancel me, but did it because that is what the accounting people told her to do. The staff was all listening by that point - they were ALL upset and said it was crazy for me to have been cancelled before I even received a bill. They said there is a practice administrator who is above the woman that cancelled me and that is who I should direct a complaint to.
Then I went into the treatment room and my blood pressure was high (which never happens). The nurse said "Well of course it's high - you just got done ranting." And we all laughed. Treatment went fine and I am very relieved. ONE MORE LEFT!
Thank you all again for being there.
Amy0 -
Amy, the same thing happened to me when I was having treatments. It was my first treatment after the new year and I had been waiting about 45 minutes and one of the nurses came over and told me I had to see accounting first. I was so embarrassed and I did not even have a balance. This was at the Helen Graham center. So, I went to accounting and there wasn't a problem and I had my treatment but it was very upsetting. I think they could handle things in a better way like we don't have enough to worry about. Take care everyone.
Mary Anne
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Yes, Amy write a letter! I did it after my first and shockingly painful biopsy.... the letter was read and my message was heard. You will feel better, and it might help someone else.
I have a hair question: I'm at the tail end of 3-week cycle #2; back for round 3 on Monday. I haven't lost hair like I thought. I shaved my head a couple of weeks ago when it started coming out in handfuls. It never came out all the way, and now it almost seems to have grown some-- but my scalp is itchy, and I have a couple of pimply spots. I still have my body hair. Is it normal for it to hang on like this? Did you all lose everything? Can I have some hope that my tough Irish hair genes will allow me to keep my eyebrows (which are itchy, I must say) and eyelashes?
Colleen
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LeapFrog39: we have the similar diagnosis and I was wondering whether you were offered radiation after chemo.
I was not expecting radiation at all and still feel down from the discussion with radiation oncologist today. She said "your case is still in controversial zone and I am not strongly recomending the radiation but just offering it. It depends on what kind of person you are - if you want to throw everything possible at the disease" ...
Jenna
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Colleen: My hair started coming out 2 weeks after the first treatment so I had a No2 buzz. Then it stopped and I have not lost any since, in fact it grew so much I had to have 2 touch ups. It is thinner than it was - I had very thick hair. My eyelashes and eyebrows are intact. Pubic hair all came out except for some fuzz at the top. I seem to have lost my post menopause facial hair but still have hair on my arms and legs. I have noticed the odd scab in my scalp which might be hair follicles - not sure.
My onc didn't seem surprised. Women who have AC-TH often report their hair grows when they start the taxol part.
We must be tough, that's all I can say. I've just had my 6th TCH and am looking forward to my hair coming back and wonder what colour it will be. So far, it looks silvery.
Sue
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